BCG Information and Advice for Non-invasive Bladder Cancer

 

What is BCG?

Bacillus Calmette-Gurin (BCG) is a vaccine that has been used since 1921 to prevent tuberculosis (TB), making it the world's most widely used vaccine. However, it is also now used as an immunotherapy agent for the treatment of bladder cancer. 

So how does tuberculosis fit in with bladder cancer treatments? 

 

In 1929 Dr. Raymond Pearl was the first scientist to notice that patients that had TB didn't have as much cancer as the general population. In the 1970's scientists tested BCG against 9 different cancers. They found that it worked best against stage 0-1 high grade, bladder cancer.

This lead to further investigations and in 1976, BCG was used for the first time on non-muscle invasive bladder cancer (NMIBC). This type of cancer treatment is called immunotherapy. BCG was the first approved immunotherapy treatment for cancer. In 1990 the FDA approved the use of BCG for NMIBC, as an immunotherapy cancer treatment.

 

Remember, NMIBC means that those with a stage 0 or stage 1 bladder cancer are possible candidates for BCG. 90% of bladder cancer tumors that are found and NMIBC.

However, because there is a BCG shortage, you will have to have grade 2 (moderate) or grade 3 (high) bladder cancer to be able to get it. Even then, sometimes a grade 2 stage 0 cancer will not be able to get it, and if you have stage 0 grade 3, there might be some modifications to your BCG schedule (half the dose, not as many maintenance doses). 

I know... this seriously bites. BCG is the gold standard in treatment and does incredibly well in treating this aggressive cancer. But those with higher grades and more aggressive cancers need the BCG first. BCG is used to help keep the cancer from growing and to help keep it from coming back. 

 

What is meant by immunotherapy, is that the treatment will get your own immune system, to fight against the cancer. What is interesting, scientists still don't fully understand why the treatment works. They just know that it does! 

How does BCG work?

 

BCG is called "immunotherapy" because it's getting your immune system to fight the bladder cancer. Really, scientists are not exactly clear on how it's working.

 

It is thought, BCG works by being an agonist for the TLR 9 receptor, creating a strong immunostimulating effect. Meaning it stimulates your immune system to get working to fight the cancer. Additionally, this might also be anti-inflammatory response as well. 

Which is ironic, in that BCG literally creates a dramatic inflammatory response in the bladder. That is ultimately the reason I needed to stop using it. It was causing too much inflammation and pain in my bladder (called cystitis).

 

It's interesting to note, that the medication called naltrexone, in a low dose (4.5mg per day. This is dosed for 3 days on, then 3 days off) does the same thing that BCG does, being an agonist for the TLR receptors, including TLR 4 and TLR 7-9. I'm currently taking low-dose naltrexone (LDN) for this reason. I'm not able to have BCG treatments, but hopefully this medication can help do some of what the BCG is doing.

 

What Happens Before Getting BCG?

 

Unfortunately, many of us that have bladder cancer call this cancer "the forever cancer" because treatment and detection lasts so long. It's kind of intense. Expecially at first when you see the schedule, it can be really overwhelming. 

Just hold on! Don't look too far ahead. That's not helpful. Just do the next thing. If this week is BCG, just think of THIS week.

 

You have to have scopes every 3 months for two years, and often it does come back no matter what you've done to try and prevent it. The recurrence rate is really high in bladder cancer. The overall rate of recurrence for NMIBC is 60% to 70%, and the overall rate of progression is 20% to 30%. Ta tumours (which are mostly low grade) rarely progress to a higher stage, but they tend to recur.

 

Because of these reasons, it's also one of the most expensive cancers to have to fight.

 

First thing, before BCG starts, your tumor is going to be removed and sent to pathology. You will find out if it's cancer, the type, the stage, and the grade.

Article: Bladder Cancer Types, Stages, and Grades

 

The tumor removal is called Transurethral Resection of Bladder Tumor, or for short TURBT. For short, I pronounce it like "turbit."

 

Article:  What to Expect with a TURBT

In simple terms, they go through your urethra (can you say OUCH!) to take out the tumor. The camera, the light, and the tool that cuts and pulls the tumor out... yeah it all goes through your TINY URETHRA!! When I had my TURBT, my urethra hurt just as much, if not more, and for just as long as my bladder did, as I was healing from the surgery.

 

After the TURBT, your doctor will wait 4-8 weeks to start BCG treatments. They want your bladder wall to be healed. If there is a huge open sore in there, it's more likely that you will get a tuberculosis infection, when you have your BCG treatment (that is what my doctor told me anyway!).

 

 

Where do you go for Treatment? 

 

You can go to your urologists office, a cancer center, a urologist oncologist office, or your oncologists office. You don't need a special infusion center or anything, because this is a very quick and simple procedure. 

 

BCG is placed directly in your bladder. It is not given in an IV (intravenously). 

 

Please realize, when you get the BCG, you WILL not be seeing your physician. Actually I take that back. I have actually met one patient in which their doctor gives the medication. Usually it's a nurse's aid, nurse, or nurse practitioner. 

 

This can be frustrating for some people, thinking that they would see their doctor at the appointment. This is considered a "nurse" visit. A nurses aid, a nurse, or a nurse practitioner will catheterize you and put the BCG in your bladder. 

 

Article:  What type of Doctor Should I Choose for Bladder Cancer Treatment

The BCG comes in a vial like the one shown above. The nurses aide that works for your physician, or an NP will mix the BCG in front of you, with some normal saline. They will put this mixture into a larger syringe, that connects to the catheter they will be inserting into you. 

 

Arrival at the Office, and Prep for the Procedure

You get one instillation of BCG, once per week. With each week, the symptoms will come on faster, will get worse than the previous week, will be more painful, and will last longer. 

 

So plan for the worst, hope for the best. 

 

Have somebody bring you to the appointment. Have some support lined up for the first few weeks. I'll talk more about this later in the article.

 

You will come in the doctors office and check in. They will have you give a urine sample, running a test called a urinalysis. They are checking to see if you have a UTI (urinary tract infection), checking for blood, white blood cells, and bacteria (nitrates) in your urine. 

 

Article:  Urinalysis (UA) and Hematuria - Blood in Your Urine

 

If you have a urinary tract infection (UTI), the BCG will not be given. If you are in the middle of treatment, it will be suspended for a week, while you are put on antibiotics. If you have not started, it will not be started for a week.  

 

Please note... later on in this article I mention that I pre-medicate before getting BCG. I highly recommend this! But you need to clearly understand, the medication called pyridium (AZO over the counter) can create a false positive for having a UTI.  

You will need to chat with your doctor about this. It really makes a difference to have that pyridium on board, much earlier than the moment you pee it out. You very well could take it right after you give a urine sample. 

My doctor has never had an issue with it. I just tell them EVERY time I give them a urine, if I'm taking pyridium or not.

In preparation for the procedure, they will have you undress from your waist down, and you will be given a cover to put over your private parts once you are on the exam table. The exam table is then raised up, for the convenience and comfort of the nurse's aid, nurse, or nurse practitioner who will be administering the BCG, getting ready for the procedure.  

You will be cleaned with betadine or chlorhexidine. This should not hurt. It's just a little cold. I had one friend who had a nurses aid that rubbed her so rough during the cleaning, it brought my friend to tears! If that ever happens, interrupt that nurse and absolutely DEMAND someone else!

It should not be a painful experience when you are being cleaned.

On a male, the area being cleaned will be the tip of your penis, and also going down the shaft some.

For a woman, your legs are put in stirrups like at the OB/GYN. 

The labia majora and minora will be spread, and the labia and all surrounding tissue around the urethra will be cleaned. Yes, it's a little cold. Here is a quick review of the female anatomy if you don't remember: 

They will then put some numbing gel in your urethra. It doesn't hurt. It's just a little cold. For the numbing gel to work, you need at least 5-8 minutes. So if they put the gel in, and want to start immediately, advocate for yourself! Let them know you want to wait longer, to get more numb. 

Your urethra will thank you! 

A women's urethra is about 1.5 inches long. A man's urethra is 7 to 8 inches loooooooong! That is quite far for that catheter to go before reaching the bladder. Additionally, men have their prostate to get past as well, and this can create further tissue trauma and pain.

Sometimes between the woman spreading her legs, and trying to pull back the labia, it can be difficult to find the urethra. If you cough once, or bear down, it can help the urethra be more visible. 

Here is a quick review for the male anatomy as well. Get to know your prostate boys! That sucker can make cystoscopes and characterizations more difficult. Be sure to get someone that has a lot of experience putting in urinary catheters in males.

As you are waiting for the lidocaine jelly to do it's job, you are on the exam table, laying on your back. At least women are, because are legs are in the stirrups. 

Because of the anatomy of a man, I'm assuming they could sit instead of lay down.  

 

 

Try Your Best to Relax - Being Catheterized is not too Bad

I have been catheterized 18 times in the last 22 months (as of Aug 2022). I'm 22 months into this battle. Truly, if you are worried about getting a catheter, please don't be! It's not too bad.

However, if you have a bunch of anxiety about going, be sure to take something for it. Have someone drive you. Some people have serious anxiety about medical procedures. You are going to have a lot of these, and you don't want all these little trauma's adding up to some serious mental health problems later. 

Mental health and cancer is not often talked about. It should be! There is so much stress and trauma that we go through. If you can avoid that trauma, by taking a medication for anti-anxiety - do it!! 

We are all doing our best, and in fact you should have the opposite of shame. You are honoring what you and your body needs, and that is always a good thing. We need to get through this with the least possible trauma as possible. 

One helpful tip.... REMEMBER TO BREATHE!! This is going to help so much with this process. It will signal your body to try and relax. If you clamp down on that urethra, by stressing out and guarding, it will just make the whole thing so much more difficult and painful.

I was an IV nurse for 10 years. It was so difficult to get IV's in people that were stressing about it, and people that would hold their breath and guard against the pain. The same goes for this procedure. You have to try and relax!!

Try and relax your urethra, like when you are about to pee. I know it's hard! Something is being shoved up there, instead of pee coming out. It's supposed to be a one way road, but if you have bladder cancer, that is no longer the case. 

Your urethra is going to be accessed ALL THE TIME!  My urethra has been accessed 27 times in 22 months (catheterizations, cystoscopies, and TURBT's)!! You need to get used to this.

Do your very best to imagine your urethra relaxing. It will make the procedure tolerable if you can relax.  

One man said breathing is the only way he gets through this procedure. He said that the aid and the patient count to three. The patient takes a deep cleansing breath, and then they put the catheter up as he is breathing out. He says that breathing like that really helps him be able to get through it.  

The Procedure

 

BCG is instilled into the bladder by a straight catheter, like the image above. It's a soft and flexible tube that is threaded up your urethra. This type of catheter is for a one time use. They insert it, drain any urine, and then the medicine is put into your bladder, and the catheter is taken out. 

I have heard that some offices will use a foley catheter to do this (like the picture above). In fact, the last time I went for BCG (#13) I requested this type of catheter. It is totally reasonable and fine. 

 

Some doctor's will have the foley catheter in during the time you let the BCG stay in your bladder. Then when it's time for the BCG to come out, they drain the bladder through the foley cath, into a bag, and then pull out the catheter. Then they send the patient home.

Article: Foley Cath, Straight Cath, Intravesical Therapy - When to ask for a Catheter

 

This method of delivery allows for the BCG drug to come into direct contact with the cancer cells in the bladder. This form of instillation is called intravesical therapy. Intravesical therapy is when any medication is instilled directly into your bladder.

 

Hold the BCG for 1-2 Hours

 

After the BCG is put in your bladder, you are then asked to hold it in your bladder for 2 hours, if you can. The BCG can be very irritating, causing bladder spasms, and urinary urgency, burning, and frequency. 

 

I know that some people worry about this. All you can do is your best. I've always been able to make it to the two hours, but my goodness, it's starting to get much harder. I'm 43 years old, and I've now had 15 BCG infusions. Because of the side effects of the BCG, I have had to stop treatment. 

If you are not able to hold it for two hours, be sure to tell the nurse at the next visit.

I have recently seen on bladder cancer forums, that there are some doctors in Eastern US that are having patients only hold it in for one hour. Specifically one patient reported that in the Boston area the VA Urologists don't believe you have to hold it for the full two hours. I'm not sure if this is backed up with studies or not. 

 

My doctor has asked me to do 2 hours, so that is what I do. 

 

Tuberculosis Dissemination or BCG Dissemination

 

BCG contains a live, but weak, form of tuberculosis (TB). A potential, and VERY rare side effect of BCG bladder instillation, is getting tuberculosis.  

 

This is called Disseminated BCG Infection or Disseminated Tuberculosis Infection. One in 15,000 patients receiving BCG treatments will develop this infections. It takes 6-9 months of intensive treatments including IV antibiotics, biopsies, and hospitals stays, with tremendous amount of side effects in order to rid the body of it.

 

If you have had Disseminated BCG then you cannot have BCG treatments anymore. 

 

Though it's extremely rare, Disseminated BCG, can spread outside the bladder and cause an infection. When this occurs a person may experience the following:

• shortness of breath
• blood with coughing
  
• weight loss
• loss of appetite
• chills
  
• dizziness
• fever that does not respond to medications or go away
• confusion
• joint pain
• fatigue that doesn't go away
• a skin rash

People that experience any of these, should immediately talk with their doctor.

 

Unfortunately, after you have had BCG treatments for bladder cancer, years later you can still have a potential of getting tuberculosis.  

 

So if there is ever a time in which you have fevers of unknown origin, that don't go away, please remember to tell your doctors that you had BCG. This could be the reason for your fevers and infection.

 

Remember THIS IS SUPER RARE!! I want to educate you about this, but I don't want you to be overcome with fear either. I know it sounds scary, but the far majority of patients never have to deal with this type of infection. 

 

BCG is incredibly successful at getting rid of bladder cancer, and the cancer not coming back (called recurrence). That in my book makes it all worth it.

 

People that have prepared BCG without being careful have got TB as well. 

 

That being said, there has not been ONE case of people at home getting it (loved ones that live with the person that got the BCG). When you scroll down and look under the section about bleach, you will see  information about how to disinfect your urine properly. 

But don't freak out about this!!! Remember... there has NEVER been a case of a loved one getting TB from the patient that got the BCG treatment.

 

 What is the Schedule of BCG?

 

The following schedule is taken from a handout that BCAN published. It's FANTASTIC!!! I literally printed this out, and wrote down all of my treatments and scopes, to stay on top of the schedule. Don't expect your doctor to do this. 

 

BCAN didn't make up this schedule. This schedule is from the Southwest Oncology Group (SWOG) protocol. They had a landmark study that proved that having maintenance BCG after the initial 6 weeks (called induction) decreased recurrence of bladder cancer, as well as survival rates. 

 

The SWOG schedule is THE schedule to go by. It's the schedule that has had the most studies behind it, proving it's effectiveness. 

 

Don't do what I did. I didn't keep an eye on the schedule, and my doctor got me THREE months off!!!

 

So print this schedule out, and when you are making your appointments for BCG, and your cystoscopy's, refer to this schedule. 

 

To find the PDF handout about BCG, that includes this schedule, published by BCN, go to Google, and type this in: "expert explanation BCG" 

 

The first thing that comes up will have the title "Intravesical Immunotherapy with BCG" and you can see the address is from BCAN, and it's a PDF handout. 

 

I'm going to put the link here. If it doesn't work then do your google search: https://bcan.org/wp-content/uploads/2018/02/BCG-Expert-Explanation-2.pdf

I've taken a screen shot of the schedule sheets. It might not be as clear as getting the original PDF.

 

 If you have a recurrence, then the schedule will unfortunately start over, kind of.

For instance, after BCG #12, my six month cystoscopy showed a recurrence. A super small Ta that was low grade. 

 

Because it was low grade, my urologist was good with me doing 3 doses of BCG instead of the 6 that is shown as the introduction or induction. I was already at a theraputic level of BCG, so I didn't need 6 doses, and honestly, there was no way my bladder could have tolerated that anyway. 

 

So the BCG schedule is the same when you restart, you just don't have to have the 6 weeks induction. But I also know many people that have had recurrences and that do the 6 weeks induction. 

 

Medicine is an art, and there are lots of ways to get to the same place. 

 

The cystoscopy schedule should for sure remain the same if there is a recurrence. Start the cystoscopy schedule over. Every 3 months cystoscopy's for 2 years, then every 6 months for 1 year, and then yearly after that.

 

Bladder cancer is super sneaky. You need to keep a very close eye on this thing, with aggressive monitoring.

What is BCG Induction or Introduction?

 

The first round of BCG is for six weeks. It's called induction. This is probably the most important schedule of the BCG.

 

Studies have shown, that the induction is the most important part of BCG therapy. Studies have shown that lesser doses (not a full dose) and less than 6 weeks of an induction, shows greater recurrence and advancement of the cancer.  

So with the BCG shortage, it's important to find a provider, that can give you 6 FULL doses, for your induction. 

What is Maintenance BCG?

After the initial round of 6 weeks of BCG, called induction, you will be given a "booster" or "maintenance" BCG doses, to keep the BCG at a therapeutic range in your body. 

 

As mentioned earlier, the famous SWOG study, is the study that clearly showed the benefits of maintenance BCG. It showed a significant level of recurrence-free survival rates, in those that had the maintenance done. 

 

If your cysto's and urine come back cancer free (during every cystoscopy a urine cytology is done), then you will have BCG once per week, for three weeks at 3, 6, and 12 months after the initial BCG treatment. 

Depending on your type of cancer and how aggressive it is, and what grade you have, you can go all the way up to 3 years with maintenance doses. They are given at month 18, 24, 30, and 36. Three weeks of treatment at each of those intervals.

 

Please see the schedule above. It really makes this so much more clear than trying to write it out.  

Unfortunately, with the BCG shortage, it's the maintenance doses that are often sacrificed. Either they are cut out completely, or they are given at 1/2 dose or 1/3 dose.

 

Everyone in the bladder cancer world, calls these doses your maintenance BCG. 

When you're on bladder cancer forums or groups, you will see people talking about BCG number 8, BCG number 12, etc. Those are the cumulative maintenance doses. If you see the schedule above, in the very far left hand corner, it also gives these cumulative numbers.

Meaning, the first 6 weeks are doses 1 through 6, and they are called the induction. The first set of maintenance will be dose 7, 8, and 9. These are given 3 months after the 6 week induction. 

 

The second set of maintenance will be doses 10, 11, 12 at 6 months after the start of BCG.  And so on...

 

What to Expect with Maintenance BCG

 

I wish someone would have told me what to expect with the maintenance BCG. I was expecting it to be easy peasy, like the very first 3 weeks. That has not been the case for me, and others I have talked to. 

 

BCG #7 (the first week of maintenance, 3 months after BCG), is more like week 3 or 4 of the initial installation. Plus, because I hadn't had an instillation for 3 months, it really smacked me hard! I was not expecting that.

 

The effect is cumulative. The BCG is still doing it's work 3 months after the initial 6 weeks! It's building upon itself, to stay at a therapeutic level in your body. 

 

Think of it like antibiotics. It takes a few days of taking them for your body to get to a "therapeutic level". That means that a certain amount of the drug stays in your body... it builds up to the level it's supposed to be, to be able to kill the bacteria in your body. Then you keep taking the medication even after you feel better, to keep that level therapeutic, long enough to kill the bacteria.

 

The BCG builds up in your body the same way.

 

So plan on the BCG maintenance being difficult. It might not be, but when you are in the thick of things, you don't want to organize getting help. Ask for help BEFORE. Clear your schedule. Have meals brought in. I'll talk more about this later.

 

I have now had 15 BCG doses. They truly get more difficult, and more painful with each one. So hang on! Cancer treatments are not awesome, but in the case of BCG, it has really awesome success rates. So it's worth it for me!!

 

Now, after 15 doses, I have chosen to stop BCG. The side effects have just become too much. At some point the inflammation from the BCG gets so bad, I really started to worry that a new cancer was going to form. We thought at my cystoscopy 6 months after BCG #12, that I had several red patches that looked like a CIS. Thank God that it wasn't! Praise the Lord!!!

 

The goal of doing BCG is to save your bladder. Before BCG, the only option was bladder removal. That is not an option I want to look at right now at the age of 43! I am fighting to save my bladder. 

But I also have a Ta tumor, which is stage 0. Yes, it is high grade (grade 3 meaning it's more aggressive and more likely to come back), but BCG has been show to respond well to my type of tumor. 

 

So doing BCG is an individual choice. Don't let anyone bully you into something that you don't feel good about. 

 

 

What Motivated Me to Write This Blog?

 

I think half the battle of cancer, is knowing beforehand what to expect. That is why I've put this blog together. This article on BCG was my first article, because I was so shocked just how under-educated I had been concerning BCG. 

 

I think bladder cancer patients, especially those that are NIMBC (stage 0 and 1), are overlooked. We don't go into cancer centers, so we don't get educated the same way other cancer patients are. We are not helped with a team of social workers, nurses, doctors, physical therapists, massage therapists, financial helpers, etc. 

We slip through the cracks! I am actually working with a social worker right now, to start improving our systems here in Southern Oregon. If ANYONE is diagnosed with cancer, they should be referred to a cancer center, in which they get all the benefits of a cancer center.

 

Weeks before getting BCG, I was starting to get nervous. Nobody had explained ANYTHING to me, other than I was getting this mysterious thing called BCG. 

 

I started doing my own research. I was shocked how much was involved, and how much I wanted to do to prepare for this, but NO INFORMATION had been given to me. 

 

A week before the BCG, I still hadn't heard anything from the doctors office about how to prepare or what to expect.  So I called my doctor's office. They never called me back. Another phone call, and no call backs. 

 

Yes, I got a new urologist after the induction BCG. There were WAY too many problems with this office. Do not tolerate this level of poor customer service. We already have so much stress on our plates, you don't want incompetent office personnel and physicians to add to your burdens. 

So I started scouring the internet to find information. I didn't even think to get in cancer groups at this point. So I gathered all the information on my own. I was still quite nervous about all of it, and it was very overwelming.

 

There are so many things in my experiences with this that have been difficult. I wish I would have known many of these things before I started BCG. That is why I write all of it down, I want to help educate others coming after me on this journey. 💜💛💙

 

 

The rest of this article, I will talk about what to expect with BCG and after BCG, and how to prepare for it. 

BCG - Different Reactions

The symptoms of BCG vary widely. Some people get the BCG and don't have hardly any issues at all. Other people get it, and are laid out for a week plus, and deal with a whole lot of pain. Everyone is different. 

 

I personally land on the difficult side of the spectrum.

 

Asking Questions and Writing Them Down

 

It's a strange thing that happens to me, I know this happens to others as well because they have told me. You have a mental list of all the questions you are going to ask your doctor, and when you get in front of your doctor, or the nurse's aid, you can only remember one or two of them. 

 

So.... WRITE THEM DOWN!! One cancer patient had a great idea, to keep a notebook in which you write the questions, and when you get the answers, write the answers. Truly you are your best advocate. Bring it to every visit.

 

 

Pre-Medicate

I ALWAYS pre-medicate before going to a BCG appointment. I take them right before I leave. It's about an hour before the BCG goes in.

 

*** If you take pyridium, you need to let your team know when you give them a urine sample. It can make it look like you have a UTI***

Here's a huge list of different medications that are available and that you can take to help alleviate pain and other symptoms:

Pain Medications to Help With Bladder Cancer

🔶 Acetaminophen / Tylenol 1000mg every 8 hours: over the counter, and helps with pain, muscle aches, and fevers. Don't ever take more than 4 grams in 24 hours. This can be taken every 8 hours. This is also often in narcotics. Make sure you are adding up the TOTAL Tylenol usage for the day. Tylenol is processed in your liver, so can be taken at the same time as Ibuprofen. 

🔶 Ibuprofen / Advil / Motrin 600 mg every 6-8 hours:  over the counter, and helps with pain, muscle aches, inflammation, and fevers. This can be taken every 6-8 hours. Ibuprofen is processed in the kidneys, thus it's okay to take Tylenol at the same time (Tylenol is processed in the liver). Make sure you are drinking enough water to not stress your kidneys. Ibuprofen can cause irritation and bleeding in your stomach. Ibuprofen is classified as an NSAID (non-steroidal anti-inflammatory drug). DO NOT COMBINE WITH ASPRIN! 

🔶 Cannabis / Marijuana, oil or gummy, aprox. 10mg THC: Lots of people use this for the pain or nausea caused by cancer treatments, including BCG. Cannabis can also can help with the anxiety related to all of these painful experiences. If you use an edible (gummies, brownies, oil put under the tongue),  you have to remember it takes 1-2 hours for it to take effect.The total time that it will be in your system is 12 hours from the time you take it. Smoking it will get you high and out of pain/nausea faster, but it will leave you much faster as well. You'll want to make sure that whatever you get has THC in it.  you can start around 10mg. The THC is what will help you relax and what will take the pain away. However, CBD and CBG are also fantastic! They take away inflammation as well!! Great for pain management. If you live in a country and state in which you can get this, you should! I was shocked how much it has helped my urinary pain/urgency/frequency on bad BCG days and after the TURBT. It did so much better than a narcotic that I was prescribed.

🔶 Aspirin / Acetylsalicylic Acid / Bayer / 500mg every 6 hours : over the counter, and helps with pain, muscle aches, inflammation, and fevers. Aspirin is processed in the kidneys, thus it's okay to take Tylenol at the same time (Tylenol is processed in the liver). Make sure you are drinking enough water to not stress your kidneys. Aspirin can cause irritation and bleeding in your stomach. Aspirin is classified as an NSAID (non-steroidal anti-inflammatory drug). DO NOT COMBINE WITH IBUPROFEN!

🔶 Narcotics / Hydrocodone (Vicodin, Norco, Lortab) / Oxycodone (Percocet, Percodan): These are all serious pain killers. You will get them after surgery if you need them. I found that I needed one pill prescribed for BCG #12. It's about a 4-6 hour window that the pain is just intolerable, right after you void the BCG out. What is interesting, is I found that narcotics don't really do much for bladder pain. I didn't ask for this again. The cannabis did much better for me.

🔶 AZO / Pyridium / Phenazopyridine / Prodium / Pyridate / Baridium / Uricalm / Urodine / UTI Relief: a medication that works as a painkiller to sooth the lining of the urinary tract. It helps relieve pain, urgency, and frequency when urinating. It will turn your urine orange while it's in your system. This is totally normal. 😊 It does stain underwear permanently, so get some undies you can throw away. You can get this over the counter, however I highly recommend you get your doctor to order it. 200mg dose of pyridium. I'm grateful for this dose, and this medication. It really helps.

🔶 Anti-Anxiety : There can develop some real anxiety around tests, procedures and treatments. Lots of these things are painful, and so we develop anxiety about them, often making the pain even worse. So take that anxiety medication! Let someone else drive you to the appointment. 💗

Overactive Bladder or Bladder Spasm Medications

These are medications that help with bladder spasms or overactive bladder. This can help after BCG therapy and after a TURBT. The ER or XL stands for extended release. It makes it so you take the medication once a day, and it releases that medicine throughout the day.

🔶 Toterodine / Detrol 

🔶 Oxybutynin (oxy-BYOO-ti-nin) / Oxybutynin ER / Ditropan XL - This is the medication that I take. It greatly helps with bladder spasms and urinary urgency and frequency.

🔶 Trospium / Sanctura

🔶  Solifenacin / Vesicare

🔶 Darifenacin / Enablex

🔶 Fesoterodine / Toviaz

🔶 Mirabegron / Myrbetriq

Hints and Tips about Pre-Medicating

 

If your doctor didn't order these medications for you, ask for it!! It's always better to have these things beforehand. You don't want to be sitting in the bathroom crying, rocking back and forth because of the pain and irritation, anxious for your doctor to return your phone call, and then call it to the pharmacy, and pick it up.

Can you tell that has happened to me? 

 

So listen to me and pre-medicate! I promise it will help, and your bladder and urethra will thank you later.

 

Personally, I take Tylenol, ibuprofen, pyridium (200mg), and oxybutynin (5mg ER) about one to two hours before the installation of BCG. Right after I leave the doctors office I take 10mg of THC, a cannabis gummy.

After a pretty traumatic experience after BCG number 12, I now pre-medicate using cannabis with at least 10 mg of THC to battle the pain and anxiety. It has helped dramatically! I highly recommend it.

Article: I Can't Pee! Acute Urinary Retention

 

The Pyridium will help with the stinging and urgency and pain with urination that will come after BCG. Be sure to get the 200 mg that is ordered from your doctor. There is an over-the-counter AZO form, it's just not strong enough. 

Unfortunately, the urinary urgency that comes from BCG doesn't really go away. It lasts nearly the whole week for me, just in time for the next BCG! So Pyridium and oxybutynin will be your friend!  

 

After BCG #6, the urinary urgency, frequency, and pain last for about a month for me. The symptoms slowly subside.

 

After BCG #9, the urinary urgency, pain, and frequency last for nearly the whole 3 months until your next BCG treatment.  The further you get away from the treatment, the better the symptoms get.

After BCG number 12 and 15, the urinary urgency, frequency, and some bladder and urethra pain continued for 6 months. I have not been able to hold as much urine either. So make sure your doctor has hie medications written for you, so you can take them when you're uncomfortable at home.

 

Please remember, there are foods, drinks, and medications that can make your bladder more irritated. 

 

Article: Bladder Irritants

 

The Oxybutynin... oh this helps so much with bladder spasms!!! It doesn't relax you (the "oxy" in the name first made me think it's a pain pill... it's not), it only relaxes the bladder. So this is not for anxiety. 

 

BCG # 3 I found this out the hard way. After I did my initial void after holding the BCG for 2 hours, my bladder SPASMED like crazy and it didn't stop for 10 minutes straight!! It felt like I was in labor. I didn't know my bladder could have such power!

 

Instant tears from the pain! Thankfully I remembered how to do Lamaze breathing again! LOL!

 

The spasms eventually subsided, but I don't ever do BCG without Oxybutynn on board now. 

 

Don't hesitate to pre-medicate for anxiety. Anxiety is a natural part of all of this. Nobody wants to do cancer treatments. It feels like you are purposely hurting yourself. If you've had other medical related traumas, be aware of that, and support your body and mind in this journey.

If anxiety is making the procedure more difficult and traumatic, take something for it! If anxiety is creating so much dread the night before and the day of, take something to help take the edge off. Your job is to support your body, mind, and spirit, in whatever way you can. 

If anxiety is causing the bladder spasms to be worse, take something for it!

Have someone drive you so you are not driving under the influence of anything.

 

If you can get it, marijuana edibles would be great for this. 

 

Remember, it takes 1-2 hours for edibles to take effect, and they last up to 12 hours from the time you first took it. 

Take the recommend dose and don't take more!! You can overdo it really easily. Believe me, my husband is an ER doc and he has seen this happen more times than he can count. People take some cannabis edible, and they don't feel anything, so they take more, don't feel anything, and then 3 hours later, they are in the ER because they are often vomiting and not well, because of too much cannabis.

 

Something to know about pyridium... it turns your urine orange - like REALLY orange. You have to give a urine sample before each BCG treatment. Between your urine turning orange from the pyridium, and being so concentrated because you are dehydrated, get ready for a dark orange urine color! One week it almost looked like blood. You should have seen the face of my nurse assistant! LOL!

Again, I've said this above, but it is worth repeating... pyridium can also make it look like you have a UTI. Be sure to tell your healthcare team you have taken pyridium  when you give a urine sample. 

Tylenol - Pain and Fevers

Tylenol is going to be your friend. Some low grade fevers are normal. I go from chills to sweating for the first 3-5 days after the BCG instillation. By BCG #10, this would usually last day 2-6 after BCG is given.

So have some sweatshirts handy, and at night, maybe a fan to help with nighttime sweats, and extra blankets when you get chilled.

 

In the same night I would go from extra blankets and wearing a sweatshirt, and strip down to my undies with a fan on me. Everyone is different. Each week seems to be a little different as well. 

The Tylenol will also help dull the pain some too. Remember don't ever have more than 4 grams in a 24 hour period. Write down what medications you take at what time. It can get confusing if you don't write it down. That way, if you need it in the middle of the night, or you took it in the middle of the night, you don't have to try and worry about it. 

Additionally, writing down the medications is helpful if you need to go to the ER. By far, most people don't ever need to go to the ER for issues concerning BCG, but it does happen. It did happen to me with BCG number 12. I had urinary retention, meaning I couldn't pee. This is an emergency situation! I was so grateful that I had written down all my medications. I just brought that list with me when I came to the ER.

 

Stop Drinking Fluids 4 to 6 Hours Before BCG

 

 

You want to be a bit dehydrated when you get BCG, so it's easier to hold your urine/BCG for the 2 hours. If you are making a ton of urine AND you have the BCG, your bladder will fill faster and the bladder will need to empty sooner. 

 

Remember, when you get past BCG #3, your bladder gets crazy angry! It's hard to hold your urine. The BCG installation just intensifies this. The BCG is stressing your bladder. It's already going to increase urgency, frequency, and bladder spasms. You don't want to cause more problems by making a lot of urine.   

 

Some people are not able to hold their urine and wet themselves. This has not happened to me, but oh has it been close more times than I can count! I'll talk more about preparing for this worst case scenario further down in the article.

 

I usually have BCG about 11 in the morning. I drink a tiny amount (maybe 6 oz) of water that morning. That has been a good balance for me. I'm dehydrated enough to not stress my bladder after the BCG, but it also gives me enough to pee in the cup. 

 

 

Drink Lots of Water AFTER the First Urination

 

You are dehydrated. Your body needs support - so drink!! But wait until after you pee for the first time. Sometimes I will drink 6-8 ounces about an hour before needing to pee, if I'm especially thirsty. 

 

Drink as much water as you can. I will usually drink until I feel a little nauseated from drinking so much. 

 

Drinking water will flush the BCG out faster, so the really uncomfortable symptoms will ease up faster. 

 

 

Bladder Irritants: Things to Avoid Eating, Drinking, and Taking on the First and Second Day of BCG

On the day or two after getting a BCG treatment, the day of surgery and probably a week after surgery, you should avoid all these foods. 

 

Sometimes, I have to avoid them, when I have some bladder flare-ups (urgency, frequency, and pain gets worse). 

If bladder irritation is a serious problem, which really does start to happen after BCG number 9 for me, you might need to look at this list of foods and adjust your diet to help your bladder heal.

Don't Drink/Eat:  

🔶 Coffee

🔶 Alcohol

🔶 Tea (herbal is okay) 

🔶 Soda

🔶 Sparkling water

🔶 Anything with caffeine in it 

🔶 Anything that is carbonated

🔶 Alka Seltzer (it creates carbonation) 

🔶 Chocolate (it has theobromine in it which is just like caffeine)

🔶 Spicy foods

🔶 Tomato based foods

🔶 Citrus: grapefruit, lemons, limes, oranges

Caffeine is a diuretic, making you urinate more. It is also a bladder stimulant, so it makes the bladder squeezes more strongly at smaller volumes. BCG is already going to be causing these issues, you don't want to compound it! 

 

Carbonation, made with carbon dioxide or CO2 is an irritant to the bladder lining. So no soda, sparkling water or Alka Seltzer. 

I found this great article that talks more about this, written by a urologist. Click here to see the article.

Alka Seltzer for BCG - NO! 

When I was desperate for pain relief on BCG #11, a dear bladder cancer friend of mine, told me that she heard that Alka Seltzer could help with the pain.

I immediately sent my hubby out to get me some, and took it along with anything else that I thought that could help. I was not familiar with this stuff, but we saw on the box that it has aspirin in it. 

I took it along with all the other meds I could possibly have. 

The next urologist visit I had, I mentioned this strange sounding "remedy" to her. She was shocked. She clearly told me that Alka Seltzer is a bladder irritant and DO NOT TAKE IT WITH BCG! 

 

There is a pain medication in Alka Seltzer (Aspirin) that might be confused with helping. Better choices for pain medications would be Tylenol, Cannabis, Ibuprofen, or Aspirin (that is not in Alka Seltzer).  

 

 

What to Expect: Don't Plan to do ANYTHING for Days. Rest, Rest, Rest!!!

 

 Day 1: Seriously. The first 24 hours, you will have a lot of physical symptoms - urgency, frequency, burning with urination, and bladder spasms. It feels like you are peeing out razor blades, or a stream of fire. Having blood in your urine is totally normal those first few days.

 

Additionally, once you get to BCG #10 and up, it will also feel like there is a literal fire inside your urethra and sitting in your bladder for a good hour after voiding the BCG. 

 

The last thing you need is for you to try and take care of someone else. This is the time to take care of you! 

 

My body naturally wants to sleep when it's hurt. So I take a lot of naps. This really helps reset me. I'll have periods of feeling more okay, and it's after I've taken a nap. 

 

Unfortunately once you get into BCG #8 and above, napping is not really an option. You will have pretty severe symptoms for 4-6 hours after peeing out the BCG. The first hour and a half is just... wow. So bad.

 

The first few hours after BCG, I used to let myself sleep. But after BCG #8, I found that I kept having dreams about being burned from the inside, waking up urgently to burning, urgency and pain with urination! It was really uncomfortable and very disorienting. 

 

So wait to take a nap, for at least a couple hours after your first pee. Starting around BCG #8 , expect that you won't be able to take a nap on the first day. You will be consumed with peeing a lot, and trying to deal with the pain.

After BCG number 11 and 12, those first six hours I urinated probably 20 plus times. Unfortunately you have a terrible night's sleep as well. Over night I probably pee 3 to 5 times total. 

Day 2-3: after BCG, the "flu-like" symptoms are in full swing. I feel yucky, low energy, too hot, too cold, nauseated, dizzy, brain fog, and easily over-stimulated. I'm sensitive to noises, people talking, and movement... seriously don't even think about getting in a car.  If I try and concentrate too hard on something I get a little confused and nauseous (I tried to take a class over zoom once... that didn't last long). 

 

During this time, I also still have some urgency and frequency with peeing. Keep up the hydration that that will help so much.

If you need to take pyridium or an anti-bladder spasm medication, don't hesitate to do so.

 

Article:  Bladder Cancer Medications for Symptom Management

 

With each BCG treatment, the brain fog seems to be stronger. I can't concentrate on anything. I can't watch documentaries because it's hard for me to retain information. I can't talk to the repair man because what he is saying doesn't make sense.I can't read my usual books because the plot is too complex. It's super frustrating! 

 

Just hang on, it will eventually go away! For me, it usually starts to fade within a couple of weeks, and gets a lot better 2-4 months out, just about in time to start the next maintenance! 

After BCG #12 and #15, unfortunately, the brain fog lasts about 5 months.

Day 3-4: this is when it peaks for me. But be careful. It logically seems like you should be feeling better now, and you might start having windows of doing better, but you won't be fully ok yet! Don't plan anything. Make sure you have help with cooking, cleaning, kids, etc. 

 

During this time period after a BCG treatment, I tried driving. It was a BAD idea! I was spacey, and my brain couldn't process driving very well. I would find myself swerving because my reaction time was not good. I don't drink alcohol and didn't have any meds at all on board. It was just the BCG. 

 

I realized that I was not safe to drive. Please learn from me so you don't have to put yourself in danger.

 

So stay home!!! You feel yucky and you just need to rest. 

 

During this time, it's even hard for me to stand for long periods of time, like with cooking. I sit at the stove with a chair as I cook, if I have to. 

 

I have a family with young kids, it's busy and crazy, and you sometimes have to do stuff even when you are not feeling well. 

 

Do your best to carve out space and time for your to rest and heal.

You are literally fighting off cancer and tuberculosis! You need support!

 

Day 4-7: depending on what week I'm at, I start to feel better slowly. The brain fog lessens. I have more periods of feeling ok to chat with friends. I have more time where my energy comes back, the over-stimulation starts to go away. I will still have some pretty severe urgency and frequency with urination.

The farther out you get with your BCG (The more doses you have), the longer it all lasts. Eight days for me is rare, and in fact has only happened once, because of a terrible complication that I had, of not being able to pee after the BCG. If you want to learn more about that, then read the article below.

Article: I can't Pee! BCG and Acute Urinary Retention

 

Month 1-2: After BCG #9, the urinary symptoms lasted about two months, some of them still lasting three months, just to start the next set of BCG treatments. 

 

Unfortunately, after BCG #12 and #15, the bladder bladder pain, urgency and frequency last for 5-6 months. The first two months were very uncomfortable.

 

Month 3-6: After my last cystoscopy in Jan of 2022, we found a small Ta tumor. it looked just like a seed sprouting from the ground, except the ground was all red and irritated flesh. 

There was also so much irritation and inflammation, we thought some CIS patches were found. Fortunately, the red patches were just chronic inflammation and not CIS. The inflammation is from the BCG. This is after 6 months of not having it!!  

 

Article: Bladder Cancer Types, Stages, and Grades 

 

With each cystoscopy, my bladder was getting more red and irritated. After BCG #12, the cystoscopy started showing a wound on my bladder wall that didn't ever heal. It showed serious irritation and inflammation.

I couldn't believe it. There are also a lot of white floating things in the urine that you see during the cystoscopy. Some people have this. It's bladder cells sloughing off because your bladder is so angry and sore. 

This picture is not of my cystoscopy, but this is pretty close to what the sore looked like. 

Unfortunately, the urinary urgency and frequency calm down slowly over 6 months, but do not go away completely. I'm 43 years old, and feel like a 70 year old woman having to pee ALL THE TIME!! My bladder just cannot hold as much urine as before - probably by half!

 

Perineal (Peri) or Hygiene Bottles

 

Having a peri bottle or two is absolutely awesome for women and men going through BCG. This is one of those things, that I wish I had known before starting BCG. 

 

In fact, I have three of these, and having three has come in very handy for BCG 10-15 in particular. Your urethra will get SO INCREDIBLY IRRITATED! 

Saying those words are not adequate. I have found that some warm water in these bottles, and then spraying the urethra, is incredibly soothing. For about an hour, I just keep refilling these, and spray them on my urethra.

It can be a bit time intensive, but seriously... when you are desperate for relief, you will do anything! BCG number 11 was the first time that I had a hot bath on the first day of BCG. Look below for further information about that.

 

I have three of these bottles from when I had babies, but you can get them most anywhere. They spray water on your penis, or  perineal area (vagina, urethra, labia, rectum). I use one on my vaginal area, and one in the back by my rectum. 

For men, you need to make sure your rinse off the head of your penis. I have seen many comments in groups, in which men get incredibly irritated on the head of their penis. This is because they are not rinsing off their penis each time after they urinate.

Here is a picture to remind women of your anatomy in your perineal area:

 

The BCG is very irritating, because that's what it's supposed to do. It irritates the bladder, but it irritates everything else on it's way out as well! 

 

For me, the BCG gets on my labia, and around my rectum area after I pee. This is totally normal, your labia is the extra folds that surround your vagina and urethra. As we all know, as women, when we pee, it can kind of gets everywhere down there, and BCG REALLY makes that apparent!

 

When I first did BCG, I would wipe as usual after urinating with just tissue, but found out quickly that my whole peri area was getting really irritated and dried out quickly.

 

After the instillation of the BCG, you will be given wipes to clean up. This is appropriate to use them at this time at the doctors office, to clean off excess betadine (that was used to clean you before the catheterization), and the lubricating gel that was used in the catheterization. 

 

Be sure to wash your hands well after wiping though. Remember you have active TB on your hands. 

 

Once you are home, don't use wipes! It will ADD to the dryness and irritation. There is alcohol in wipes. This will only cause further irritation.

Use the peri bottles with water, after every time you pee, for about 12-24 hours after the BCG is given. Your perineum will thank you! 

 

Zinc Oxide Cream for Your Penis or Labia Majora and Rectum

 

Zinc oxide is just not for babies bums! It's a skin protectant. It puts an oily barrier on your skin, and will help dramatically with irritation.

 

Women: rub on zinc oxide cream on your labia majora (look at picture above) before your first urination after the BCG treatment, and as needed. Don't do it BEFORE you get the BCG. They need to clean you for the catheterization, and zinc oxide would make quite a mess trying to do that. 

 

By the way, it doesn't go inside the labia (minora) or in your vagina. It's for the outside of your skin only. It is ok to put it on your rectum (the whole where you go poop out of, see picture above) as well, if that is getting sore. 

Men: before you void out the BCG, put this on the tip of your penis. It will dramatically help with decreasing irritation on the head of your penis.

 

 Poise Pads or Adult Briefs (Diapers)

 

 

Be sure to wear a menstrual pad/pull up to your appointment. A friend of mine who has had issue with urine incontinence (some leaking), told me about Poise pads. These were designed to catch urine. So instead of the regular menstrual pads, they are a bit different. The fit different, and they hold urine better than a menstrual pad in my opinion. They have been amazing to use! I highly recommend them!

 

I get the largest size, because I want to make sure I have plenty of coverage if there was an issue on the way home, not being able to hold the BCG in. I live 40 minutes from my doctors office. So this was a real concern for me. Also, after having 3 babies, if I sneeze, or laugh too hard, well I leak just a titch. If you have BCG in your bladder, you want to catch that leak on a pad. 

If you already have issues with holding your bladder, consider wearing a brief. I am shocked just how irritated your bladder gets from this, and there have been many times I have almost wet myself. Not the day of BCG treatment, but the following days and weeks following the treatments. 

Many people do have a hard time holding their urine, on the BCG treatment day. So be prepared!

 

Also, think about buying some cheap underwear to use just for BCG, because it's going to get stained! The pyridium you will take will turn your pee orange, and it stains your underwear. If betadine was used to cleanse you before the cath, for the BCG, it will also stain. It's quite the orange mess down there, even after using peri bottles or wipes (in the doctor's office) to try and clean up. 

 

Additionally, after the catheter is taken out, some of the BCG is on the catheter, and so immediately it's on your labia, and peri area. This can then be transferred to your underwear. 

 

If you are wearing a pad, you can easily throw the pad away, and keep things much cleaner that way.

If you're cheap underwear get stained, no worries! Just toss it!

 

 

Disposable Underpad

 

 

I put one of these on the seat of my car, just in case. If I was to have an accident, I don't want TB all over the seat of my car!

My Go Bag - Accidents and Urination in Public Bathrooms

So if you have a bit of a drive from the doctors office, and you have to hold the BCG in during the drive, you should be prepared for worst case scenario. You might need to pull over and use a public restroom. 

 

Or if the urgency gets so bad, you might wet yourself, and you will have a hot (or warm! 😂) mess on your hands. 

So... I have a go bag. I think it is always better to be prepared. Thank goodness I have not had to use it, but it's nice to know that if I did have some problems, I would be able to handle it.

 

It has the following: 

 

1. A large waterproof bag - to hold the soiled clothing and towel

2. Wipes, to help clean me off. 

3. A towel

4. Extra disposable underpads (the one you were on will be soiled)

5. Underwear

6. Poise pads

7. Comfortable pants/shorts

8. Bleach

9. Hand sanitizer

Remember, if you use a public toilet, you will need to let the bleach sit in the toilet for 15-20 minutes before you flush. Look under the bleach section for more information.

 

Wear Comfortable Loose Pants

 

I always wear comfortable loose bottoms when I go have BCG, with a loose elastic waistband.

 

BCG #1-2,  this wasn't really an issue. But BCG #3 and onward, it does make a difference for me! 

 

I noticed when I'm holding the BCG in my bladder, that my stomach/bladder area would get really sensitive to anything, even kind of tight. My abdomen swells (not my bladder but abdomen!) My abdomen gets achey. I believe this is my bladder spasming a bit, and an accumulation of fluid. I have no idea why that is, especially the fact that I'm highly dehydrated right after the BCG treatment. 

It has to obviously be the effects of the BCG. It really does have strange symptoms, and they vary so widely between patients.

So with the abdominal swelling/bloating, it can all get uncomfortable. The comfortable pants have been very helpful. 

 

Being comfortable will also help you hold the BCG for the 2 hours, decreasing the bladder spasms and irritation. 

Sit or Stand? 

 

This usually isn't an issue that women have to deal with, but might not cross a man's mind. When urinating, be sure to sit on the toilet, and not stand. 

If you are standing, there is a huge increase splashing. You don't want to splash the TB all over you, the toilet, and the bathroom. 

 

 

Disinfection and Bleach

Have a bottle of bleach in your bathroom. Make sure it is just regular bleach. I guess there is a "splash less" kind that does not disinfect.

 

You will have to bleach your urine (about 2 cups) after each time you pee for the first 24 hours. Well that is what I've heard from one doctor. My other doctor said after urinating six times.

That second one isn't very helpful! Because after BCG #7 and onward, I urinate 6 times in less than a half hour!

So I asked directly how many hours, and they said about 6 to 8 hours to bleach your urine.

 

Let the urine sit for 15-20 minutes at least. This gives time for the active TB to be killed.

 

Because the urgency, frequency, and burning with urination got worse each week, I was having to go pee more often. So by BCG # 6 you should be going by the amount of hours, and not the amount of times you pee.

 

All I do is I pee the first time, throw in the bleach, turn on my bathroom fan, and close the door (after washing with the peri bottle, washing hands, new pad, etc.). I don't flush again until the next time I need to pee. 

I just always do the 8 hour rule. I bleach my pee for about 8 hours.

 

So... that being said. I think some people really freak out too much about this. I saw this quote the other day on a cancer forum:

 

" I found an interview with Dr. Donald Lamm [President of BCG oncology Phoenix Arizona] on this site if anyone wants to watch it. He and another doctor were actually laughing about the Clorox protocol. He said in 30 years there has never been a case of anyone getting sick from this. He stated "that is still in the BCG insert? There are much worse bacteria in our toilets." Just thought I would pass that along. BTW, I still follow the procedure, just in case. Lol Janice" (this quote was taken on 10/6/21 from here). 

There have been cases in which sick patients, that actually get the BCG, will get tuberculosis, but never anyone in the house of a patient. So all of this might be an over-kill with all the bleach. 

I repeat - there has NEVER been a reported case of someone getting TB, from contact with BCG at home.

 

Bleach and Septic Systems

 

 

So you have a septic system. You can't put bleach in it, what are you to do? From what I understand, if you put bleach in your septic system, you can destroy all the good bacteria in there, and you will then have a septic system repair on your hands.

 

I personally didn't have this problem, but I've seen on bladder cancer forums, people that do. So I wanted to include some possible solutions here: 

 

One person offered this solution: 

"This is the solution that I arrived at. if anyone finds a problem with it let me know. for six hours after treatment I pee into a container rather than the toilet.
I then add the bleach to the container at the end of the 6 hours. the property I live on is over an acre of land and I then dump the contents at the back of the property.
i have been told that bleach is also not good for the environment ( although i doubt as bad as the BCG bacteria). after doing some research I found a source for something called "bleach-stop" which neutralizes the bleach. Its actually sodium thiosulfate and can be purchased on websites dealing with dying fabrics. I add a 7 0r 8 tablespoons to the container before dumping it. I also purchased a bleach test kit and have verified that this amount of bleach stop completely neutralizes the bleach. - Jude" (this quote was taken 10/6/21 from here). 

This was another solution found by someone going through this: 

 "Kind of primitive but I use A horse trailer portable potty and use it during bcgs..just put a bunch of bleach in it first with a little water and pee away for the next six hours...I even let it set overnight and then dump it in the woods the next day! After I read some articles on septic systems and bleach I was willing to do anything to avoid a potentially pricey consequence if I killed off all the good stuff in my septic tank! Oh, and for toilet paper, I set up a second, double lined trash can with a top, next to the potty and put the toilet paper in it and spray bleach over it." (this was accessed on 10/6/21 from this website). 

 Another: 

 " I have a septic tank and had the same concerns. Also, I live alone so there was no one else here to worry about. I did not flush any more than I had to, allowing the bleach to dissipate as much as possible. After my last treatment, I waited until 2 or 3 more days had passed and flushed an entire 3 dose bottle of Rid-X. The people at the hospital told me I was worrying needlessly but I don't think they really understood what I was asking. I can't say if what I did was right or wrong. It's just the way I chose to address the issue. Hope this helps." (this was accessed on 10/6/21 from this website). 

 

Do Not Urinate Outside

I've seen some men wanting to do this to protect their family. The medicine inside you is active tuberculosis. You do not want this in the environment around your home. Pets, insects, and humans could accidentally get into it, and contract tuberculosis or spread it. Some men that have done this, have also noticed that their urine ends up killing the plants that the urine touches! 

 

Have a Set Bathroom Only You Use

 

 

You want to isolate your bathroom area for at least 24 hours, so you don't spread the TB to anyone else in your house. I have my 7 year old daughter make me a "DO NOT ENTER" sign, that I post on my bathroom door when treatments starts, to remind everyone not to come in. 

 

Have Someone Drive You to Your Appointment

 

I'm a young, really independent woman. The first week of my BCG appointment, I was contemplating driving myself. I'm a nurse, I know what this procedure was going to be like, and I can drive. So what's the big deal - right?

 

Well I'm glad I didn't do that! I had my husband drive me just in case, because I didn't know how I was going to react to the BCG. The drive home has not been awesome. It has progressively gotten worse, as expected. Even the very first time, week one, I was not feeling great on the ride home.

 

After the BCG is put in your bladder, you might start feeling weird. For me, I get a little dizzy, I get some weird burning starting in my legs, and near by bladder. My abdomen starts to swell. It's just gets uncomfortable. 

 

You are dehydrated, and you just start to not feel well. I also have a bit of nasea (I already have motion sickness) and get over-stimulated easily with it being too hot/cold, too much noise (turn off music) and the motion of driving.

It's nice to have someone driving you, so you can sit back and try your best to relax. You need to focus on relaxing, so you can retain that BCG in your bladder for as long as possible. If you are driving and not feeling well, you can't do that! 

Plus... come on now! You have cancer. It's time to ask for help. People want to help, let them. Let them love you and support you. Having a loved one take you to your appointments is a good thing.

Don't Have Sex or Swim for 48 Hours After BCG Installation

 

I'm not going to show you a picture for that one. 😂 

 

Not having sex after BCG the first couple of days, is to decrease the potential spread of tuberculosis to your partner. After the 48 hours, still use a condom for at least a week. 

Same for swimming. After 48 hours you are good to go.

I'm not the type of person who would be okay to swim or have sex so soon after BCG, but some people really don't have many side effects from this.

I don't feel well 48 hours after BCG. There is no way I would be doing swimming or sex that soon after!

 

 

Have Meals Brought in, or Freeze Meals Ahead of Time

 

 

I arranged for my church to bring meals in 2 times per week during one of my rounds of my BCG treatments. I have them come 24 hours after the BCG installation (day 1), and day 3 after the BCG 

 

So for instance, my BCG goes in on Tuesday. I have meals brought in on Wednesday and Friday. These seem to be the hardest days for me, and thus they are the greatest support for my husband and family. 

 

This has been really helpful. I totally recommend asking for help from friends and family. Many people want to help, and are happy to have something specific they can do to help.

 

Let them help!!

 

Another set of maintenance, things had calmed down. I had increased energy the two months between the two maintenance BCG's. So I made bunches of food, and froze much of it. This really helped so much. 

Plan ahead!

 

Rotate or Not Rotate?

 

Some centers or doctors will have their patients lay down and rotate every 15 minutes or so, after getting the BCG in the bladder. Rotate meaning, roll on their side, roll on their back, roll on their other side, roll on their stomach. Studies have been done to see if this is helpful. 

 

Results of the studies showed no further benefit in doing rotating.

My doctor does not recommend this to me. If I want to that is fine, but he explained why.

 If you understand how a bladder works it will make more sense to you. Think of your bladder like a balloon filled with water. The more water you put in, the larger the balloon expands.

Your bladder is very similar. The only difference is there is no air at all in your bladder. Again, imagine a water balloon. It doesn't have a lot of air in there. So when your bladder is full of the BCG and urine, all parts of your bladder are touching the BCG.

Thus, there is no need to rotate! 

 

Rotation is thought to help the BCG get to all sides of your bladder. But it already is! Your bladder is not a hard container that fills part way with fluid and part way with air. You don't have to splash the BCG around to get to all parts of the bladder. It's a muscle that contracts and expands to the size of what is inside it.  

It's like thinking of a liter of milk vs. a water balloon with zero air in it. If the bladder was like a liter of milk, rotation makes sense. But your bladder is like a water balloon. You wouldn't need to rotate a water balloon to get all the inside of it wet. All of it already is!

 

Stay at the Doctor's Office or Go Home? 

 

As for staying at the cancer center or doctors office after BCG... it really depends on your doctor and your preferences. Some doctors want you to stay. Others send you home. Some places let you choose. Others don't offer that service.

My doctor doesn't even offer for me to stay in his office. Many other places do offer this, or ask people to stay. If it's offered, and that's helpful, then go for it!

Personally, I think being in the comfort of your home is much better!

I'm always glad to be home after that first pee after BCG. I live 45 minutes away from my doctor's office. The urgency and frequency are the worst right after you pee out the BCG. 

Starting with BCG number 7, things are really, really, really uncomfortable right after you pee out the BCG. That first hour you will peeeing anywhere from 5 to 15 times, plus!!

I couldn't imagine having to find bathrooms on my way home, bleach the toilet, wait 10 minutes to flush, etc. for each time. I would have to pull over 10 plus times before getting home!

Plus if I'm hungry, thirsty, or bored, being at home makes it easy to get my needs met.

 

Wash Your Hands and Genitals Thoroughly After First Urination 

After you get the BCG in your bladder, and you hold it for 2 hours, and then you pee it out....remember to wash your hands and your genitals afterwards. 

 

The most concentrated amount of tuberculosis will be on your hands and genitals. So wash hands, and then hop in the shower and wash your private parts.  

 

To help with contamination, look to the next section about wearing gloves. 

Use Latex/Nitrile Gloves When you go to the Bathroom for the First 24 Hours

 

 

For the first 24 hours, wearing gloves will make clean-up so easy, and lesson the spread of TB. Even with wearing gloves, after I take them off, I would still wash hands. That just might be a nurse thing, and be overkill for most people.

 

Just be really mindful of what you touch when wearing the gloves. Sometimes people feel "protected" when wearing gloves. 

 

After the gloves are dirty, pretend in your mind they have black motor oil on them.

 

E-V-E-R-Y-T-H-I-N-G you touch will be contaminated and need to be washed.Think of the motor oil getting on things. Then you will be able to think of things as "clean" and "dirty". 

Keep it simple, being mindful of what is dirty and what is clean.

 

For instance, my peri bottles, are in the dirty category. The water from washing my girl parts, gets on the bottles, so I have to assume they have TB on them. Treat them as such. Don't let others touch them, and once you have touched them, know that your hands are now "dirty", just as when you wipe your hands are "dirty". 

 

Remember this at the doctors office too. After they are done with the BCG, they take the catheter out. Some BCG is on me. There is also the gel they use to cath me, and also the betadyine. 

 

They give me some wipes to clean up. 

 

When you wipe yourself, you need to treat your hands like they have TB on them (because they do). I turn the tap on with my elbow, and then wash my hands thoroughly, using a paper towel to turn off the tap (always assuming those handles are dirty!)

 

As for the peri bottles, when you fill them, you will need to touch the handles of the faucet, after touching the bottles. The bottles are dirty, so when you touch them, your hands are dirty as well. 

So if you are using gloves, put them on before touching the bottles. 

All of these surfaces - DIRTY: Grab bottles, turn on tap, fill bottles, flush toilet, go pee, use the peri bottles, wipe with tissue to dry things off, turn on tap, take gloves off

All of these surface - CLEAN: Wash hands with soapy water for 30 seconds. Use paper towel to turn off faucet. Dry hands. Pull up pants and underwear. 

 

All of that being said... don't get too freaked out about the TB stuff. Just do your best! You are going to do great!

 

Hot Bath Day 1 of BCG - Starting with BCG #11

 

Alright, I'm sure you are going to see this one and think "oh my goodness! What about the tuberculosis? How could you take a bath so soon after treatment?!?"

 

After you have your BCG 10 and 11 treatment... you come talk to me about if you care about this.

 

My urethra was so raw, and just absolutely on fire!! I was so desperate for relief. I used the peri bottles to try and continuously spray warm water on there, but come on... you can't do this for hours at a time. 

I'm talking about absolute pain for 4 to 6 hours! All I could do was pace back and forth try not to think about the pain, then peeing at what feels like razor blades, and starting over again. That first hour is the worst! I pee anywhere from 15 to 30 times!

 

Yes, I did say hours. For about 4-6 hours I was almost going insane with the pain from my urethra. I would get up and pace, then I would HAVE to pee, and then spray the warm water on the urethra. Then I would pace, and HAVE to pee, and spray the warm water. It was getting old. I was feeling really crappy. Something needed to change.

 

Out of pure desperation, I started a hot bath on BCG #11. It was only an hour after peeing out the initial BCG. At that point, I just didn't care. This is what I thought:

 

"What is worse RIGHT now - getting tuberculosis or continuing to have my urethra feel like it's being burned with fire?"

 

I  would rather get tuberculosis! So I hopped in the hot bath, and oh my goodness... it soothed the urethra! As the water got higher, it also calmed down my bladder as well. I went from a pain of 9-10/10 to the pain being more like a 5-6. It was so much more manageable.

So having a hot bath is going to be my new go to on day one of my BCG treatments. If you get desperate enough, you should try it.

You've already done an initial shower, you have peed 10 plus times, really the TB in your bladder has really been diluted.

 

Believe me... you will thank me later.

Please note, you will have BCG or tuberculosis (TB) on your body that touches the water in the bath.When you have to pee, go use the toilet, rinse off with the peri bottles, and then hop back in the bath.  

 

When you have your last bath, remember to take a shower and wash your whole body with soap and water. That way you will get as much TB off you as possible. You should also disinfect anything you touched in the process of taking a bath - bathtub, handles, toilet seat, floor leading to and from the tub, and towels.

 

Blood in Your Urine (Hematuria)

 

As you go along in the weeks of getting BCG, your urine test will start to come back with positive for blood in your urine, called hematuria (hemat = blood; urea = urine). 

 

This is normal. The BCG is irritating the bladder wall significantly. Some people can actually see the blood in their urine. There is a possibility of the bladder wall forming scabs that can slough off during this process. If the scab is large enough, it can cut off the flow of urine. 

There's also a possibility of so much blood that you form blood clots, that also stop urine from passing. This is an emergency situation! Go to the ER!

So if you can't pee, or you have increased pain and pressure (the bladder filling with urine and wanting to empty but can't), keep an eye out for this, and go to the ER.

 

One nurse assistant that was there to catheterize me, had looked at the results of the urine, and looked at me with big uneasy eyes "you have blood in your urine". Such dread! 😂

 

I reassured her that this was normal for what I was going through. It made my husband and I giggle afterwards. 

Personally, I have pretty minimal blood. Almost every time I pee I will see a few drops of blood come out. It's never been enough to form clots.

Appetite, Nausea, and Cutting out Sugar

 

As you increase in your BCG weeks (4+ for me) some people get some weird appetite issues. I get really nauseated personally. I've seen that other patients do s well. It's starts that evening of the BCG instillation, and lasts for 4-8 days after the instillation. 

My doctor prescribed zofran, and that has helped tremendously. Also, this was just my body, I did a lot better when I decreased the carbs I had. That is not scientific in any way, that is just my experience. 

 

Another thing that has helped me tremendously, was to change my diet. While researching everything about bladder cancer, I found a lot of information about sugar feeding cancer. 

 

So I changed my diet to low-carb and high fat (less extreme than keto). I got rid of all sugar (except that found in a piece of fruit or veggie), wheat, and all processed foods. I eat only real whole foods. I truly feel like God led me to this. It dramatically decreases my nausea. Plus, it starves out the cancer.

 

Diarrhea

 

Some patients have reported having diarrhea with having BCG infusions. There are medications that can help with this. I usually take immodium, also called Lorperamide.

 

Fatigue and Weakness

Wow this can get to be so much! My legs and body feel much heavier to me. It's hard to stand up for what are normal periods of time. It's hard to walk up the stairs. This can lasts for 4-8 days after the infusion, depending on how many infusions you have had.  

Get used to resting and sleeping a lot. 

 

Fever, Chills, and Body Aches

 

Having a low grade fever is totally normal. That will include the chills and body aches as well. It will feel a lot like you have the flu. Take some Tylenol and ibuprofen. It will help tremendously. 

Also make sure you have sweats, extra blankets, and a fan for at night. Sometimes you will be incredibly hot, and other times much colder than everyone else.

 

Brain Fog

 

Brain fogginess is a real thing for some of us that have BCG. For me, it has got worse with each week. It sucks, it's annoying, but you can handle it. You can choose to be angry about it, or you can choose to understand its a side effect, and will soon wear off. 

I have now done 13 weeks of BCG (the initial 6 weeks, and two maintenance of 3 weeks). I'm a month an a half out from the last BCG instillation, and I am still finding that I'm losing words, and can't remember some simple things that I could remember before. 

When it's acute (actively getting BCG), there are some very simple things like counting out money properly, or remembering a password to an email I get into all the time, that I was struggling with. 

Personally, when I feel embarrassed when I have a brain fog moment, I will often say something to the effect that I am aware that my brain is not functioning at full capacity. I had a cancer treatment, that is affecting the way that I think. Everyone I have ever told has been incredibly compassionate and understanding. 

I think problems would arise if you pretend it's not a problem, and don't ask for help. ASK FOR HELP!! I remember I was trying to count $120 in 20's and I could not remember how many 20's made up $100. I asked the cashier, and they were gracious and kind, and told me. 

 

 Don't Plan on Getting Pregnant or Breastfeeding During BCG Treatment

Women having BCG should NOT become pregnant or breastfeed until the treatment has ended.

 

Hair Loss and Brittle or Dry Hair After BCG

 

 

This has not happened to me personally, but I have seen many women talk about it. Many were frustrated that this was not mentioned to them as a possible side effect. 

 

I have heard that taking collagen daily helps, and also getting extra protein in your diet every day. I'm sure increasing your fruits and veggies will help as well. Sometimes a lack of biotin, iron, protein, or zinc can be attributed to hair loss. 

I have also been told that scalp massage will help increase the blood flow and help with hair re-growth.

If you talk to a hair stylist, they will often tell you, the health of a person can be seen in their hair. The reason BCG damages hair might have to also do with stress. It's a physical and emotional stress going through BCG treatments.

 

So make sure that you are actively doing things to reduce your stress. Stress is a big part of cancer, but it can be managed. Talk to a good friend or a therapist, to process all of your feelings. Make sure you are getting good sleep. Really up your game with eating whole foods and getting rid of processed junk and sugar. Take meds for pain and anxiety.

For dry hair, I would personally try a really good hair oil. I have hair that gets tangled really easily. I was told it's because there is not enough moisture in my hair. So I use the hair oil called Kerastase. It's absolutely fantastic! It keeps my hair moist, and shines beautifully!

 

Website: Kerastase Paris LHuile Original Hair Oil 

Acute Urinary Retention - You Can't Pee After Getting BCG

Not being able to urinate is an immediate and very serious condition. In fact it can be life-threatening if you don't get treatment. 

 

This is a rare side effect of BCG, but you should be aware that there is a potential for it. After BCG #12 it happened to me. 

 

Article:  I can't Pee! BCG and Acute Urinary Retention

 

Burning in Your Arms and Legs

 

This seems to be a much more rare side effect. Only a couple of people in the bladder cancer groups had it. My doctor just said to keep an eye on it, and if it gets to be too much we might need to stop the BCG.

 

It's strange. For BCG #1-9 I had this issue (I've had 13 BCG instillation now). Then it stopped. I truly believe this was a blessing given to me from God. Nothing else has changed. Nothing else makes sense to why this annoying and painful side effect just vanished. 

I'm so incredibly grateful! Thank you God!

 

It was getting worse with each infusion as well. Right after the infusion I would get burning and aching in my arms and legs. It felt like it might have been neurological. It was very strange and uncomfortable. It would only last for the first day or two after the BCG instillation. 

 

 

Tongue Pain, Pallet Pressure, and Dry Mouth

 

This is a more rare side effect. One patient had this start after the 2nd infusion of BCG. It was on the right side of her tongue, and she sates that it feelt almost like it has been burned. 

 

Everything irritates the tongue up to 7-10 days after an infusion. Water, food, chocolate REALLY irritate it. She also has an area on the roof of her mouth that isn’t sore, but feels like something is stuck to it. 

 

Some people have said that not only do they get the tongue pain, but that they taste metal. It makes them very nauseated and difficult to eat.  

 

Others have said that they get a really dry mouth as well. 

 

Fibromyalgia Flare/Pain

I've seen that some patients with fibromyalgia, seems to flare up when getting BCG.  One patient said "The areas where I get the worst fibro pain ( shoulders, wrists and hands and thighs) seem to be way worse than normal. Ibuprofen isn’t really helping."

 

Bipolar Hypomania/Mania

I have bipolar type 2 (you don't go manic, just hypomanic, and live in a suicidal depression 99% of the time). For 7 years I had suicidal depression and didn't realize it was actually bipolar 2, and it was an incredibly painful and difficult journey to get to a place of finally understanding what was going on with me. 

 

Having bipolar and bladder cancer... not so awesome. But we've all got our crosses to bear. This is mine. 

 

I'm assuming this is another rare side effect of BCG, to have hypomania/mania tripped. I have not discussed it on the cancer forums, but maybe I will now that I'm writing this. I'm curious to see if anyone else has this same thing happen. 

 

This is one of the side effects that I have had EVERY time I get BCG. I don't feel well because of the BCG but I can't sleep, and have racing thoughts. I always go hypomanic starting day 2 after the infusion. It lasts about 6-7 days after that. I take cannabis at night to help me sleep. It does help some.

 

What is interesting is I also got hypomanic when I had COVID as well. It lasted 6 weeks with COVID!!

 

So maybe there is something with bipolar and inflammation or fevers that trigger hypomania?

 

 ***If there is something you can add to this article, please contact me ***