Chemo Wash After a TURBT

  

Preventing Bladder Cancer Recurrence with Chemo Wash

Before you get a TURBT, be sure to ask your surgeon if they are planning on doing a chemo wash. 

If not, request them to do this. 

Studies have clearly shown that a chemo wash after a TURBT helps prevent bladder cancer recurrence, or bladder cancer coming back again. I'll talk more about this further down in the article.

Article: What to Expect with a TURBT

After the bladder tumor is removed, more steps may be taken to try to ensure that the cancer has been completely destroyed. For instance, the tissue in the area where the tumor was may be burned while looking at it with the resectoscope. This is called fulguration. Cancer cells can also be destroyed using a high-energy laser through the resectoscope.

After a TURBT is performed, when you get a chemo wash, they will put a foley catheter inside your bladder. Then they will instill into your bladder a chemotherapy, most likely Gemcitabine or Mitomycin C, and have you hold it in your bladder for 1 hour. This is what is called a "chemo wash." It's washing out all of the loose cancer cells. 

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

When cancer is cut into, there are cells or "seeds" that come loose, which is called tumor seeding. You will void (pee) most of these out. But many doctors will do a one time chemotherapy instillation into the bladder right after the TURBT, so it will wipe out any potential cancer seeds. This is so hopefully there will not be another tumor growth, and that it won't spread to your lymph nodes. 

Even if the TURBT removes the tumor completely, bladder cancer often comes back (recurs) in other parts of the bladder. This might be treated with another TURBT. But if the TURBT needs to be repeated many times, the bladder can become scarred and not be able to hold much urine. This can lead to side effects like frequent urination, or even incontinence (loss of control of urine).

A chemo wash after a TURBT has proven to decrease recurrence rates of bladder cancer.

In patients with a long history of recurrent, non-invasive low-grade tumors (slow-growing tumors that keep coming back), the surgeon may just use fulguration to burn small tumors that are seen during cystoscopy (rather than removing them). This can often be done using local anesthesia (numbing medicine) in the doctor’s office. It's safe but can be mildly uncomfortable.

Sometimes, recurrence gets so frequent, and the cancer treatments so painful, people will choose to have their bladder removed.  

Studies About Chemo Wash

After you get a TURBT surgery, it's a good idea to get a chemo wash of Gemcitabine or Mitomycin C. Having a chemo wash after a TURBT drops bladder cancer recurrence from 47% to 35%, shows one large clinical trial. 

"Based on these results," Dr. Messing said in the article quoted below, "the addition of gemcitabine after surgery should be the new standard of care for patients with low-grade bladder cancer."

There are lots of other studies that show that using mitomycin C also decreased recurrence as well. However, there are concerns about the side effects of mitomycin C, as well as the availability and cost of the drug. Mitomycin C can be toxic if it leaks out of the bladder through a hole, and the drug can also cause severe rashes when it comes in contact with skin.

Gemcitabine, on the other hand, is a well-tolerated, readily available drug that "comes at relatively little cost in terms of side effects or expense," said Dr. Messing. The side effects were similar between the two groups in the trial and were generally manageable, he added.

Article from National Cancer Institute (accessed 3/18/2022): New Treatment Approach Could Help Prevent Recurrences of Some Bladder Cancers

What to Expect with a Chemo Wash

When you wake up, your bladder will be more uncomfortable than a regular TURBT. It stings and your bladder hurts and spasms. The lining of your bladder has just been cut into and is raw. That chemo is irritating the hell out of your bladder. You just had a RIGID cystoscope go through your urethra, so your urethra is not happy about having a catheter in either. 

It's held in there for an hour. For me, I was still pretty sedated, and so the pain was very controlled.

But you will still have an IV in, and you can ask for pain medication to help with this. The nurses gave me pain meds to help with the pain as I requested it. 

They will take out the chemo after it's been sitting in your bladder for an hour. They will use what is called "chemo precautions" in which they will wear a gown, gloves, and splsh guard over their face. This is to prevent any chemo getting onto them. 

Chemo can burn your skin. 

So the first time you pee when you get home, you will still have chemotherapy in your bladder. It will be slightly more watered down, but it's still pretty potent. 

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 this bladder cancer journey. It helps after a chemo wash post TURBT, but will also help after BCG as well.

 

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 for women (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 chemo is very irritating, because that's what it's supposed to do. It kills cancer cells, and good bladder cells as well, but irritates everything on the way out too.

 

For me, the chemo 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 get everywhere down there, and Chemo REALLY makes that apparent!

 

This was the first chemo wash I have had. I didn't wash enough times when I got home. I was not instructed to do so. I had chemical burns on my urethra, labia, and near my rectum. It hurt quite badly for 4 or 5 days. There was crazy dryness as well, which didn't help with the healing process. 

So please learn from me and don't make this same mistake.

 

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

 

Also, 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.

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

 

What is a Foley Catheter? 

The image above shows what a foley catheter is. These are the types of catheters that stay in for days or even weeks. 

The balloon that you see, is inflated with saline, after the catheter has passed through your urethra, and that balloon part is in your bladder. Once it's in your bladder, the balloon in inflated, and it keeps the catheter from coming out. The balloon sits on the bottom of your bladder. The catheter stays in your urethra and dangles between your legs when you stand. 

Sometimes this can cause the feeling that you need to pee. That is totally normal. The catheter being in your urethra is not super comfortable. Be sure to have something that anchors the catheter to your leg. That will help a lot.

If you are a nurse or doctor, you have probably seen these suckers be pulled out by confused patients. They are usually anchored to your leg, so you don't accidentally pull it out. I'm sure you can image the pain and the damage that could be done to your urethra if it was pulled out!  😕

A foley catheter is used during and after surgery if needed (including a TURBT), if you have an epidural (like when you are having a baby) and if there is urinary retention, meaning you can't pee. 

Either the bladder is not contracting right to get the pee out, or the urethra is not letting urine pass. Additionally there can be a blockage that is not allowing the urine to pass. It could be a tumor, an enlarged prostate, or a blood clot blocking urine from exiting your body. 

A foley catheter can be hooked up to a urine bag, that can be used to store urine until you can empty it in the toilet. There are large bags that can hold up to 2 liters for overnight use. 

I had an emergency experience with acute urinary retention after BCG #12. That was not awesome. Read about that experience in the article below.

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

What is a Straight Catheter?

A straight catheter is much more simple than a foley. It is just a soft and flexible hollow tube, with a hole at the end of it. This catheter can drain urine, and you can also insert fluid or medicine into the bladder through this tube. 

For instance, this is done with BCG. Also it can be done with chemotherapy. They put the medication directly into your bladder. 

This type of instillation is called intravesical therapy. With intravesical therapy, the doctor or nurse puts a liquid drug right into your bladder rather than giving it by mouth or injecting it into your blood. The drug is put in through a soft catheter (straight cath) that's put into your bladder through your urethra. The drug stays in your bladder for up to 2 hours. This way, the drug can affect the cells lining the inside of your bladder without having major effects on other parts of your body.

Article: BCG Information and Advice for Non-invasive Bladder Cancer

When to ask for a Foley Catheter

This might sound really strange. I know that I NEVER would have thought in my lifetime I would ever ASK for a foley catheter. 

If you are asking for a foley catheter, it's often because you are hoping that the catheter can stay for awhile, days or weeks. 

So why would I ask my doctor for a foley catheter? 

In the article I listed above, about urinary retention, you will notice that I got the foley catheter because I couldn't pee, from the trauma of having BCG #12. My bladder and urethra were done and just couldn't do their jobs anymore. 

What was surprising, was how nice the foley catheter was! Yes, it feels like you have to pee, because the balloon sits on your bladder. Yes, there is some irritation in the urethra (especially after having BCG). 

- BUT - 

The catheter let my bladder and urethra REST! The BCG is so incredibly irritating by #12 that the first hour I was peeing upwards of 15 times in an hour! That first day of BCG is about that same amount - around 15 times during the whole night. It's a lot of waking up. It's a lot of pain, and it's a lot of stress on my body from not getting sleep. 

So after I got that catheter with BCG #12 I was pleasantly surprised! The PAIN of the BCG was nearly GONE! No bladder spasms. No urinary frequency and urgency. No feeling like I'm pissing fire and razor blades!

I got SLEEP! It was AMAZING! 

So this experience really helped me see that there is a time and place for foley catheters. 

Foley Catheters and TURBTs

So after TURBT #1 I was not required to have a foley catheter. 

Article:  What to Expect with a TURBT

After TURBT #2 I was sill not required to have a foley catheter, but I WANTED one! After the experience with BCG #12, I realized that the foley can really help with pain, urgency, and frequency with urination. 

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

So I asked my doctor if I could keep the foley in for a few days. He thought it was a strange request, even after I explained my reasoning, but Dr. McLeod was on board. 

The IV pain meds after the TURBT were wearing off, and I hadn't taken any other pain meds yet. I was getting dressed to go home from the TURBT in the hospital, with the foley cath in. 

I had to stop getting dressed because of the PAIN from the foley! Tears were suddenly streaming down my cheeks, and I couldn't move!

What happened to the foley being my friend?!?

Well turns out that if you cut open the lining of your bladder (from the TURBT), and insert a RIGID cystoscope through your urethra, nothing is happy about a foley catheter touching the bottom of your bladder and urethra. 

 Article: Difference Between Rigid and Flexible Cystoscopy

I won't make that mistake again... don't ASK for a foley with a TURBT! Sometimes you might need one, and if that is the case, be ready with some serious pain meds to help.  

That being said, if you have a really large bladder tumor that has been removed, and your doctor doesn't send you home with a foley, you can ask for it to stay and not be pulled. If you have lots of bleeding, it can cause large clots that will cause urinary retention, and you will end up in the ER getting a catheter.

Here is a quote from the wife of a bladder cancer patient after a TURBT: 

"When my husband had his tumour removed he was sedated so didn’t feel a thing but they removed the catheter at the hospital before I brought him home. In hindsight they should have left it in because I had to call an ambulance two days later because he could not longer urinate and he was in excruciating pain (blood clots caused this). They had to try 3 times to insert a catheter because his prostate was so swollen from the procedure. So make sure to monitor the flow of urine after the procedure."

 Foley Catheters and BCG

So I just had BCG #13 this week. Before starting the procedure, I asked if we could change the catheter from a straight cath to a foley cath. 

My NP thought this was a strange request! 😂 Most people hate these suckers! Why would you want one!?

I explained to her my positive experience I had after BCG #12. It really made the pain more manageable, and let me get sleep. 

She said there is an increased risk of infection (also called a UTI or urinary tract infection) with leaving a foley catheter in. If I got a UTI, then I would need to push the BCG off by a week. 

She wanted me to take out the catheter in less than 16 hours (after I woke up the next morning). I agreed. 

Things were going well, holding in the BCG. It felt fine going home (I have a 45 minute drive, holding in the BCG), but when I got home I needed to go number two. So I sat on the toilet to do my business, and the pee came out! From AROUND the foley catheter!!

I didn't even know that was a possibility! I bet with my TURBT so recent, my urethra could stretch much farther than just the catheter that was in there. So it did, and the urine squeezed out! BCG also causes my bladder to spasm like crazy, so my bladder was more than willing to help get the urine out as well. 

The problem was then, I had the full concentrated BCG in my urethra and it was BURNING! So even if I kept the catheter in, my urethra would get so incredibly irritated, without having further watered down urine pass through it later. 

So we had to immediately cut the foley catheter and take it out. 

If you ever need to do this, the nurse will show you how. It's super simple. You just cut it with some scissors and pull very gently and it will slide out of your urethra. You can throw away the catheter when it comes out. Make sure you are in the shower when you do this. Both the saline that was in the balloon in the foley catheter comes out, and any urine/BCG left in your bladder. 

If you want to know more about BCG and how all that works, check out the article below. 

Article: BCG Information and Advice for Non-invasive Bladder Cancer

I haven't given up on the foley catheter and BCG. I still believe it's going to be an incredible tool to help manage the bladder spasms, pain, urgency and frequency. 

But I have learned that I need to empty the BCG from my bladder BEFORE going number 2! 😂 That way there won't be so much pressure from my bladder, and it won't leak when doing my business. 

Well at least that is my educated guess on the matter. 

BCG #14 is next week. I am going to ask for a foley catheter again. I will let you know how it goes! 

Difference Between Rigid and Flexible Cystoscopy

What is a Cystoscopy?

A cystoscopy is the gold standard test to rule out bladder cancer . If there is blood in your urine, eventually you will get a cystoscopy, or you should be sure to ask for one if they are not forthright to give you one. Even if a CT or ultrasound comes back negative for cancer, you should still get a cystoscopy. 

If you are going in for a Cystoscopy - bring someone!!! After you read about my experience found in the article below, you will understand why. It's for support, in case you find a tumor. Write down potential questions beforehand. Let your support person know, they should be ready to ask questions, and write down answers. If a tumor is found, believe me, you will not be in a position to understand or remember anything that is said, after you hear the words tumor or cancer. 

Article: Cystoscopy, Cancer, and What to Expect

First off, lets talk about what a cystoscopy is. 

A cystoscopy (sis-tos-ko-pee) is a procedure that allows your doctor to examine the lining of your bladder and your urethra, which is the tube that connects to your bladder and carries urine out of your body. 

Many people call a cystoscopy a cysto, for short. 

A hollow plastic tube called a cystoscope or resectoscope is passed through the urethra and into the bladder. It is equipped with a camera lens, light, and a hollow tube that can pull urine out, and also put saline in (saline is a sterile liquid made up of water and salt. It mimics fluid found in our body like tears). The saline is used to to enlarge the bladder and help visualize everything. 

The saline is also used to help get a good urine sample for a urine cytology. When your doctor is doing the cystoscopy they will spray saline in your bladder, pull out urine and spray it back in again. They will try and agitate the cells in the lining of the bladder. They want to get as many cells in the sample as possible, so if there are any cancer cells, it would be obvious to find them. Your doctor is doing this usually without you even realizing he/she is. It doesn't hurt at all, and it's done very quickly. 

Article:  Urine Cytology and Bladder Cancer

A cysto can be done outpatient at your doctors office, done as an outpatient procedure with sedation, or under general anesthesia (like when you have a TURBT).   

Article: What to Expect with a TURBT

What is the Difference Between a Flexible and Rigid Cystoscopy?

 From my experience, most cysto's are done in an exam room at your urologists office. 

An outpatient cystoscopy, like the one done in your doctors office, is done with what's called a flexible cystoscope. It's much smaller and more flexible than the one that is used during a TURBT surgery. It's made of plastic so it's flexible. Above you can see a picture of a flexible cystoscope. 

The cystoscope/ resectoscope used during a TURBT is called a rigid cystoscope. It's very rigid, made of metal, and much larger, allowing for more instruments to be used (for burning, for cutting, and retrieving the tumors). The above picture is of what a rigid cystoscope looks like.

For an in-office cysto, they start the visit like any other urologist visit. They will ask you a few questions about your urinary system (have you seen any blood, pain, urgency, frequency, while urinating etc.), take your weight, maybe some vital signs, pee in a cup. 

Also, you might be given a one-time dose of an antibiotic, that is what my urologist oncologist does for me. It's to help prevent a UTI (urinary tract infection) from developing after the cysto. 

They will have you sign a paper (called informed consent) that says the doctor has educated you on what to expect with a cysto and the risks and benefits of doing it. As you will see below, my first urologist, Dr. B. did not do this. 

My current doctor, Liam McLeod always takes the time to answer questions and educate me on everything going on. Please choose your doctors wisely! This is a REALLY long battle. You want a good doctor working for you, and one that you like and one that you trust. You can choose your healthcare providers, and can change them at any time as well.

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

If you want more information about a cystoscopy and what to expect please read the article listed below. 

Article: Cystoscopy, Cancer, and What to Expect

Starting My Journey - What I Wished I Had Known About Bladder Cancer

 

This is literally the theme of this blog! I am trying to pass on information to patients, to help them in ways that I wish I could have been helped. 

I wish I would have found this blog when I was starting this journey. I hope it helps you in yours. 

I saw a new post in one of my Facebook groups the other day, that inspired this post. The author asked everyone for advice, especially those things they wish they would have known when they started this journey. 

I wanted to share some of those things with you.

• Pyridium (prescribed and higher doses than AZO) helps for burning with urination
• Get help for your mental health "I wish there had been counseling included with my hospital stay. It was a very stressful impact on my relationship with my partner."  "me too! We are at odds at i was just diagnosed . The stress is unreal"
• BCAN is a great resource
• Be sure to get a chemo wash of gemcitabine after a TURBT (they put it in your bladder for an hour or two). It dropped recurrence of bladder cancer from around 54% to 37%. Here is the article. 
• "I let things unfold and have lived in the present"
•  "One thing I didn’t understand when I started my bladder cancer journey was the waiting, I was so mad they weren’t moving faster but I found out later there a lot of protocols. So when they do biopsy also know as TURBT, you wait to have BCG to you heal, then there seems to be long waiting between appointments. Seems like every step forward there a lot of down time, and that real bothered me. I didn’t have a group like this or anyone to talk with so I didn’t understand it all."
• Always have your phone or notepad and pen ready to take notes and write down the answers to questions. 
• I always make the doc write down the words I don't understand or medications I've never heard of, so I can go home and do research on it. 
• "If you get BCG, be prepared to wait. There's a national shortage. I had no problem getting my first full strength treatment and first half strength maintenance treatment. I was due for 2nd maintenance treatment in January but delayed due to shortage. I realize those newly diagnosed are priority. I am grateful I've been NED since TURBT and BCG. Routine cystoscopy every few months to keep an eye on things and hope it stays clear." 
•  "Make sure the Urologist has a lot of knowledge of bladder cancer & that he’s treated it! Speak up & ask how many he’s treated…It’s sometimes uncomfortable, but in this day & age-we have to be diligent. Don’t forget to get a copy of anything he has done to start the health journal!"
• Make sure you have a good doctor and don’t hesitate on getting a second opinion from a urologist, oncologist, urologist oncologist, and pathology.
  
• Don't believe that your doctor and the hospital are "in-network" with your insurance company. I believed them. I got a $9500 bill after my cystoscopy, TURBT and start of BCG. It was a nightmare. Please call your insurance company before having any of this done!
• "When my husband had his tumour removed he was sedated so didn’t feel a thing but they removed the catheter at the hospital before I brought him home. In hindsight they should have left it in because I had to call an ambulance two days later because he could not longer urinate and he was in excruciating pain (blood clots caused this). They had to try 3 times to insert a catheter because his prostate was so swollen from the procedure. So make sure to monitor the flow of urinating after the procedure."
•  Keep a journal. Write your questions in there as you think of them take it to all appointments.
• "First thing, this (bladder cancer) will be a LIFELONG journey. Our dr told us sixteen years ago that there is no cure. As long as you NEVER miss a follow up appointment, you will be good. However, I always thought as long as it stayed inside the bladder we would continue to “manage” it. Two years ago his low grade turned to high grade recurring tumors and we then went to treatment (BCG, CHEMO) without stopping the high grade. Then he had to have his RC. I guess I wasn’t expecting to have to ever remove the bladder, but we weren’t guaranteed it wouldn’t spread throughout the body. . Due to us losing two of my husbands uncles to this cancer he underwent the RC. Five months postop, he’s doing great!"
• Sometimes this journey feels like a moving target. You think you understand what the next steps are going to be, and then BAM! A recurrence happens and everything changes. It can be quite the roller coaster ride. Learn how to stay present and roll with it. You will still need to feel your feelings, but the sooner you can learn to stay present, the easier it will all be. 
• "Having a urostomy may be simpler than dealing with recurrent bladder cancer." I second that statement! I've only had one very small recurrence, and I can see why bladder removal is a potential option. The fighting is so ongoing and difficult on your mind and body. It's helpful to keep all your options open before you. 
• " If possible look for a cancer center near you that deals with bladder cancer everyday! We didn’t for the first year, then changed. You need to get the diagnosis after the TURBT. That will tell you lots more. My husband was diagnosed 3 years ago this month with high grade (aggressive) noninvasive (had not gone into or through the bladder wall) and he is doing well and still has his bladder. There have been some set backs along the way, but from where we thought he was when diagnosed, he is doing great!" 
• "The bcan.org site (newly diagnosed section) is an excellent primer. Become familiar with the acronyms (Dr. Speak), staging, treatment and diversionary options so that you can become an informed and effective self advocate. Also, a 2nd opinion at a NCI facility (Google to determine which one is near you) is highly recommended. You can send scan reports and data to their portal and arrange a virtual appointment if necessary."
• "
  One thing I suggest is getting information about and making peace with the extreme outcomes....you may never have to face them but I have observed that the "head in the sand" approach results in much more stress in the long run. If I accept the extreme, then the more moderate steps seem easy!!
  I became comfortable with the fact that I will die someday from something. It might not be from BC but it is not something I can predict time, place or method. I hope whenever that time comes, I won't have to deal with shock, denial or fear. I have "almost died" several times so I have had lots of practice. I have made plans for the possibility whether it's tomorrow or 30 yrs from now.
  When I was diagnosed with BC, I researched the various options and stats. I decided that it was "possible" that I may need RC, chemo or some other strong treatment. I have already prepared myself for the possibility and made preliminary decisions about each one. Again, it may never happen but doing it this way gives me comfort in knowing that I won't be surprised or caught off-guard if it happens.
  These steps actually help reduce my fear and give me a chance to find out facts instead of operating on imagination, which is nearly always worse than reality. It also gives me a chance to take an "academic" or intellectual approach instead of an emotional one.
  So it's not like I am hoping any of the extreme outcomes will happen but pretending they can't happen doesn't prevent it.
  To illustrate....a lot of people end up having RC but when they first find out, a common reaction is panic, horror and saying "absolutely not." The people who have gone through the surgery often say the opposite....it was a good decision, maybe it required some adjustments but here's how I deal with it, etc. It's not like I am hoping I can have this major surgery but I'm settled enough that if the doctor suggests it, I am ready to say "let's roll."
  I have not yet totally accepted the possibility of systemic chemo or radiation. I am fairly new to this cancer and just haven't had enough time to learn or prepare for it should it become necessary. I have considered some parts of it....for instance, I definitely want a wig rather than scarves if I lose my hair. I am trying to bolster my health as much as possible to better withstand the side effects....but I have not made enough peace with the possibility to completely accept that it might be part of the process.
  So my overall advice is to treat this as an adventure....life is not always fun but it is definitely interesting. I try to count blessings instead of problems.
  Good luck with your journey. We are all here to support each other along the way!"
• "1. Go to a NCI or largest academic hospital in your area.
  2. Make sure to get accessed to patient portals asap, you will get info there that no one ever shares.

  3. Keep a calendar of Postop times from procedures… helps you plan fun times.

  4. Read CT reports yourself. Ask questions.

  5. Pace yourself, it’s a battle today but a war for tomorrow."
  

Where to Start Your Journey With Bladder Cancer

 

What to do?

We have all been there. 

Maybe you are here because you think you might have bladder cancer, but you are not sure. 

Maybe you are here because a tumor has been found, and you are waiting on tests and surgery to find out what the next step is, or if you have bladder cancer. 

Maybe you just got your pathology report, and it is definitely cancer, but you are overwhelmed with how to even start this journey.

Maybe you are here because you are in the middle of treatment and you are not getting enough information from you doctor. 

No matter the reason, more information will help! I'm glad you are here. We are in this together.

This blog was created as a way to try and give back to those coming after me. Bladder cancer is not a well-known cancer, and many doctors are not forthright with information. 

Most of us don't have cancer centers where they have huge teams of people and social workers to help you figure things out. Unfortunately, you are going to have to figure out a lot on your own. I have made articles on this blog to help you figure this out. I was a nurse for 15 years, and my husband is a physician. I have a knack for taking medical information and translating into normal speak. 

I hope this information is helpful. 💗

You Might be Grieving

Hearing the word cancer is terrifying. Bladder cancer is a lifelong journey. It is not curable. When you have No Evidence of Disease (NED), it means that right now you don't have bladder cancer in your body. However, you will keep a close eye on your bladder the rest of your life. So make sure you always go to your follow-up appointments. 

Bladder cancer is a sneaky bitch and likes to come back. 

Many people call this the "forever cancer" because of how long treatments go on, and how often it comes back.

It took me a couple of months to realize after I saw that tumor on the screen at my urologists office, that all that I had been feeling and going through, was actually a greiving process. There is a lot of loss when it comes to bladder cancer. Give yourself plenty of space, time, and grace as you go through this. There will be a lot of complex and intense emotions. Process them, and let them flow. If you try and be full of sunshine and rainbows all the time, you will end up with psychological problems. It's not healthy to stuff our feelings and hide them. 

Feel your feelings! 

That being said, I do know that there is incredible power in positive thinking. So try your best to not stay in the anger, depression, and denial stages. That can also be detrimental. 

Process those emotions, let them flow and shift inside you, let yourself feel it and grieve your losses. Journal, talk to a therapist, talk to loved ones. You can do this!!

Article: Cancer and the 7 Stages of Grief

 Waiting

I love what one bladder cancer patient said about waiting: 

"One thing I didn’t understand when I started my bladder cancer journey was the waiting, I was so mad they weren’t moving faster but I found out later there a lot of protocols. So when they do biopsy also know as TURBT, you wait to have BCG to you heal, then there seems to be long waiting between appointments. Seems like every step forward there a lot of down time, and that real bothered me."

Waiting is the worst! I had some pretty traumatic experiences concerning waiting. I think we all do as we are going through this journey and this process. It's normal to feel all of this! So much of it is you are learning as you go. I have a lot less worry and anxiety if I understand what my journey will be like. That is the purpose of this blog. To help others that are coming behind me, to better see where all of this leads. 

Article:  Waiting and Staying Present With Bladder Cancer

 What Doctors Will I see and in What Order?

It really depends on where you are at with this journey of what doctor you will see first. Some people find blood in their urine and go to the ER. Some people go to their Primary Care Physician. That is what I did. 

Article: Primary Care Doctor Visit - Something is Amiss

Most of the time, a urologist (a physician that specializes in the urinary tract) will want you to have an evaluation by the ER or primary care physician before seeing them. I didn't know what to expect on my first visit to the urologist, and I wrote about that if you are interested. 

Article: What to Expect on Your First Visit to the Urologist

Be sure to contact your insurance company BEFORE you go to a urologist. I had a nightmare of an experience including a $9500 bill, because my urologist said they were "in network" and found out they were the lowest teir of my network, which created another $9500 in out of pocket expenses!! 

So learn from my mistake, please contact your insurance to make sure you can see your urologist, and if you get surgery, that the hospital you are having surgery at is also in your network.

After you see a urologist, you might see an oncologist, or a urology oncologist. It can be confusing about what type of doctor you should choose for what problem. 

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

After your surgery, your tumor will be sent to a pathologist. That is a physician that will look at your tissue samples under a microscope, and determine if the tumor is cancer or not, and if it is cancer, what type, grade, and stage. 

Article:  Pathology, Pathologists, Pathology Report and Bladder Cancer

Article: Bladder Cancer Types, Stages, and Grades

What Tests and Procedures Should I Expect?

One of the most common symptoms that people first have with bladder cancer is blood in their urine. This is called hematuria. They will find blood in your urine by doing tests on your urine. You will be peeing in lots of cups. The test done on the urine is called a urinalysis. There are many other signs and symptoms that are common with bladder cancer. See the articles below for more information.

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

Article: Bladder Cancer Signs, Symptoms, and Side Effects from Treatments - Definitions and Abbreviations

During this diagnosis time, your doctors are trying to figure out what is wrong with you. Lots of test will be done. I already told you about a urinalysis. Every doctor you see will have you do this. During bladder cancer treatments, every time you see one of your doctors anticipate that they will have you pee in a cut. You might get an ultrasound, and your urologist will most likely order a CT scan and/or CT Urogram. Once a year to once every two years after you are being treated for bladder cancer, you will be getting a CT scan to make sure there are no cancers in your upper urinary system.

Article:  What is a CT Urogram (CAT Scan)?

The gold standard test to diagnose bladder cancer is a cystoscopy. Please bring someone with you when you do this. I was 41 years old when I was being evaluated for bladder cancer, and my CT scan came back clear. I was not expecting to see cancer at my cystoscopy, be we found a tumor, and it was one of the worst and most terrifying days of my life, and I was by myself with a jerk of a doctor. 

Article:  Cystoscopy, Cancer, and What to Expect

When you get a cystoscopy, most of the time you will also have a urine cytology ordered. It's a urine test in which they are looking for high grade cancer cells in your urine.

Article: Urine Cytology and Bladder Cancer

After a cystoscopy, you will most likely have a surgery called a TURBT (Trans Urethral Resection of Bladder Tumor). There is a whole lot of information about that surgery, and recommend you read about it in the article. I write about my experience and that of other cancer patients as well. 

Article: What to Expect with a TURBT

If you have really advanced cancer and there are concerns that your cancer has spread to other parts of your body (called metastasis), your doctor might order a PET scan.  

Facebook Bladder Cancer Groups

I didn't think to join one of these, until after I was a couple months into this journey. I'm actually glad that is what happened. They are super helpful, and you get really great advice, and you can cheer lead for your other fellow cancer patients. 

 - BUT - 

They are probably going to scare the crap out of you. You will see stuff on there that will probably overwhelm you and really scare you. You will see the worst case scenario stuff, and you will also see beautiful miracles. 

You know yourself. If getting on these groups is causing anxiety instead of helping to inform you and inspire you, maybe you should get off or pass.

Here are my favorite Facebook groups: 

• Bladder Cancer Awareness/Support Group

• Bladder Cancer Survivors 

• Fight Bladder Cancer: Support (based in the UK)
  

• Women's Bladder Cancer Group

• We've been there. Bladder Cancer Families 

• Bladder Cancer Support Group is OK! 

• Women Together Fighting Bladder Cancer  

• Women and Neobladders - Bladder Cancer Survivors
  

Education

Article: Questions to ask Your Health Care Team for Bladder Cancer

It might take some time to be able to really start to dig into educating yourself about all of this. Here are some great places to start: 

• NCCN guidelines for Patients 2021 - Bladder Cancer
  
• Bladder Cancer Advisory Network (BCAN)
  
• BladderCancer.net - great articles written by experts, and patients that are currently in treatment for bladder cancer or have been in the past. 
• PDF from BCAN Intravesical Immunotherapy with BCG
  
• PDF from UptoDate Patient Education: Bladder Cancer Treatment; Non-Muscle Invasive (superficial) cancer (Beyond the Basics)
• Fight Bladder Cancer - UK 
  

Other Articles From This Blog

In these articles I have tried my best to include advice I wish I would have known. I put in those things I hear from other cancer patients as well. I am a nurse, and have done my best to help translate medical speak, in a way that you will better understand. I hope it helps. 💗

Bladder Cancer Glossary - Organized by Topic 

• Basic Anatomy of the Urinary System and other Terms for Bladder Cancer
  

• Bladder Cancer - Treatments, Surgeries, and Therapies, Jargon, Abbreviations, and Definitions
  

• Bladder Cancer - Common Jargon and Types, Stages, and Grades

• Bladder Cancer Medications for Symptom Management 

• Bladder Cancer Tests - Definitions and Abbreviations

• Bladder Cancer Signs, Symptoms, and Side Effects from Treatments - Definitions and Abbreviations
  

Bladder Cancer Types, Stages, and Grades

BCG Information and Advice for Non-invasive Bladder Cancer

I can't Pee! BCG and Acute Urinary Retention 

Bladder Irritants

Ta, Stage 0, Grade 3, Non-Invasive Papillary Carcinoma 

Difference Between Rigid and Flexible Cystoscopy

 

Pathology, Pathologists, Pathology Report and Bladder Cancer

 

For a quick glossary of terms concerning bladder cancer and pathology, types, stages, and grades click here.

After your TURBT (Transurethral Resection of Bladder Tumor - the surgery to take out the tumor, read about it more here ), they will take your tumor and send it to pathology, or a lab, in which they will look very closely at the sample of your tumor, under a microscope, looking at the cellular level of the tumor cells and bladder cells surrounding the tumor. The physicians specifically trained to do this are called pathologists. 

Please remember, that not only can you get a second opinion from a urologist or oncologist, you can also get a second opinion on your pathology. EVERYTHING concerning your treatment is about the pathology, so its vital that you understand what it is, and you are sure that the pathology is correct. 

After the tumor or tissue sample has been identified and assessed, they will give your doctor a pathology report, that gives all the information about the tumor. This report will tell you if the tumor is cancer or not. If it is cancer then the report will tell you the type of cancer, the stage of cancer, and the grade. 

Be sure to get a copy of your pathology report. Your physician will sit down with you and discuss the pathology report. You are not going to understand a lot of what is said, so it's important to have that report so you can later look up information on your own.

If the cancer is too large, or has spread too far, they might not be able to get all of it, and have to use chemotherapy and radiation to shrink the tumors. Sometimes they have to do multiple surgeries and biopsies to get all the tumors. 

If the tumor has invaded the muscle wall (stage 2 and above) then you will most likely need to have your bladder removed. If you want some basic understanding and definitions of possible surgeries and treatments with bladder cancer, click here.

The pathologist will determine if there are clean margins in the tissue samples. This means that when a tumor is taken out, at the outer edge of where the tumor was, healthy tissue is removed also. They check to make sure there is a large chunk of healthy tissue taken out that was under the tumor, meaning that "they got it all," and all the cancer cells have been removed. If you have clean margins that will mean that that got out all of the cancer tissue. 

If they didn't get clean margins, they will need to take you back into surgery to remove more of the tumor, and verify once again that they got clean margins.  

If it's a benign tumor, that means that it's not cancerous. It only grows in one place and won't spread or invade other parts of your body. Benign tumors may grow large but do not spread into, or invade, nearby tissues or other parts of the body.

If the tumor is malignant, then it means that it is cancerous. It means that the tumor is an abnormal mass of tissue when cells grow and divide more than they should, or do not die when they should, and if not taken out, it will spread and invade all over your body. Malignant tumors can spread into, or invade, nearby tissues. They can also spread to other parts of the body through the blood and lymph systems. These tumors are also called neoplasms.

If it's cancer, they will tell you the type, the stage, and the grade of the tumor. I will explain what all of this means later in this article. Just stick with me. It will all make sense. 

Most of us need to read, and re-read all of this information. It's a lot to process. Bookmark this page, and you can always come back to it when you need. You have got this. 💗

I would recommend bringing a loved one with you when you get the results of your pathology report. You might see written on a paper in black and white that you have cancer. No more time for denial. It might be right there in front of you. Believe me, it's quite the shock. Personally, when I heard the word cancer come out of my doctors mouth, I was not able to process anything else. It was almost like what you see in the movies. All the voices in the room become white noise, and I wasn't hearing what anyone was saying or processing it.

This is part of the first stage of grief - shock. Click here for an article about going through the 7 stages of grief when you are diagnosed with cancer. It's normal, it's expected, and it's important to give yourself plenty of time, space, and grace as you go through this experience. Lots of intense emotions are going to be flying around as you go through the different stages of grief. There is a lot of loss with bladder cancer.

Be sure the loved one knows what you need from them before you get to the doctors office. Tell them if you get bad news, it's going to be their job to ask questions (write them down before hand), and write the answers down.