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."