Recurrence worries

[coastaldoc]

I was diagnosed with T0/ CIS 7 months ago, after a second TURBT ( the initial one I had 2 years prior with a low-malignant potential polyp). After a 6 week BCG induction and 2 follow-up cystoscopies I now have a T1/ high-grade tumour with CIS. Things are getting worse from my perspective, and I feel like the treatments so far have done nothing but cause progress of the disease. I made all the lifestyle changes I could reasonably think of ( quite drinking, quite coffee, eating super healthy, drinking distilled water..) and I have little else I can think of that might help save my bladder. My urologist is planning a re-resection to make sure it is really T1, and there was no muscle seen in the sample, even though it was definitely sampled, according to her.  She will then plan to do another 6 week BCG induction, if the tumour is truly T1. How is it to go through re-resection so soon after a TURBT ( 1 month)? I feel pretty good at 6 days post-op now, but I still have a fair bit of bladder irritability. Has anyone out there had this degree of recurrence and gone on to clear it? How about cystectomy? How is it to manage afterwards? I am very active, love to go backpacking and ski-touring and can’t imagine giving up the parts of my life which are so vital.

[Lou]

Hi,
I’ve had 5 recurrences over the years since my initial NMIBC diagnosis in 2006, the last this past April. Some were just 3 months apart. I still have my bladder, though its not what it used to be, so I don’t know what its like to not have one. My son told me he knew a young man who lost his bladder in an industrial accident and managed to live a long time with a bag (continuing in his job) and is still alive–it’s bad, but it doesn’t sound like the end of the world.

If it comes to that for me, as it well may, I plan on going into a clinical trial before I would let my urologist remove it. The link below was posted on this forum by Jack Moon and is to a video update on one trial that is currently experiencing an effectiveness around 35%–roughly a one-in-three chance of saving your bladder–or at least of keeping it longer.

http://www.urotoday.com/video-lectures/bladder-cancer/video/mediaitem/955-embedded-media2018-05-19-18-30-37.html

There are many other clinical trials ongoing in this area to choose from.

My best to you.
Lou

[SJay]

Hi Coastaldoc

Re the second TURB in one month – This is not uncommon. I had one after 2 weeks which is apparently standard procedure.

Re cystectomy – It sounds like you are a ways from having to deal with that. If it comes to it, though, I can tell you that it won’t interfere with your activities. I’ve had an RC with a neobladder (no bag) for over two years and I ski, backpack, kayak, cycle and travel. There are some issues but nothing overwhelming.

Hope all goes well for you.

Cheers

Stephen

[joey]

Hi Coastaldoc,

I am sorry to hear that the first TURB did not result in the way we all hoped.

The following link is for 2015 Canadian Urology Association Guidelines on the management of non-muscle invasive bladder
cancer.   Page E 691 shows the diagram of algorithm of management of NMIBC.   It indicates that if the recurrence for high risk NMIBC happens after BCG,  BCG+ IFNa (Interferon Alpha) treatment may be applied.    I am not sure if BCG+IFNa treatment is offered by local clinic, but I know it is offered by centres of excellence in Canada.  I am not for sure but that Bladder Cancer Canada should be able to refer you to the centre close to where you live.   At any rate,  they give you support on your decision making and also they can  match bladder cancer survivors who had neobladder or ileal conduit  through their peer support program  if you need to know more about personal experience.

https://cuaj.ca/index.php/journal/article/view/3320/2502

https://bladdercancercanada.org/en/get-support/

The following link is for the white paper by Canadian Urology Association and Bladder Cancer Canada for recommendations for the improvement of bladder cancer quality of
care in Canada.    From page E52, they talk about early recommendation of cystescopy and bladder salvage therapy.

https://bladdercancercanada.org/wp-content/uploads/2017/03/White_Paper.pdf.

I wish you for the best and please take care of yourself.

Joey

 

 

 

 

 

 

 

 

 

 

[Rick B]

Hi Coastaldoc,

Glad you reached out to BC. There are many on this forum who can share their experiences.

I had a somewhat similar situation as you. In Sept 2012 I was diagnosed with non-invasive low grade tumor + CIS. I had 2 recurrences over the next 9 months and was treated with BCG following the first 2 incidents (the initial and 1st recurrence). After the second recurrence I was treated with BCG + Interferon. By Oct 2013 I was “all clear” and have been ever since. My next annual follow-up is May 2019.  As to lifestyle changes, I had already stopped smoking 5+ years prior; I did focus on more vegetables and less red meat in my diet but other than that not much else. Oh, I did start taking Vit D & Fish Oil dailey…I now take a MultiV dailey.  Wishing you the very best…stay positive…stay strong…keep in the loop.

God Bless.

Rick

[coastaldoc]

Thank you all for the kind and thoughtful replies. It really helps to know that other people are going through all of this, and have had much more serious disease which they are living with. Wow. You are all so inspiring. I know I will get through this too. I still have so much uncertainty, and am trying to come to terms with being unable to plan anything ahead in my life because of the ongoing surveillance and BCG schedules, etc. It is not that easy for me to stay focussed on the present, and face each day as it comes.It’s helpful to now others are going through the same thing, though I know how awful it is. I’d love to hear from some other women who are going through this as well, and how they are coping. I am 53 and super active ( ski, hike, climb, mtn bike, kayak….and don’t want to stop!) I have no risk factors for BC, no family history, and no idea how it picked me, only it is a life lesson that I have been granted, and will make the best I can out of it. Good luck to all of you on your journeys.

[marysue]

Hi coastaldoc:

I’m female and was 50 at the time of my diagnosis in 2008.  I was diagnosed with 7-8 tumours all at TaG3 meaning very superficial but high grade (aggressive).  I had a TURBT surgery to remove them followed by 6 weeks of BCG immunotherapy.  I then had cysto exams every 3 months and remained clear until July 2010, 3 months shy of my 2 year anniversary where I was hoping to be promoted to 6 month check ups.  When I was at that July cysto check a single tumour was discovered at the top of my bladder.  I was suspicious at the time that something was going on because I had passed a tiny amount of blood and a clot a couple of weeks prior to that exam.  I had a repeat TURBT followed by 15 more BCGs ( another set of 6 followed by 3 sets of 3 over a 1 year period).  Needless to say the recurrence was upsetting and nothing short of a pain in the you know where in having to set the clock back and start all over again. Mentally it was tough to handle.  It was around this time that I discovered Bladder Cancer Canada.  Back in 2008, there was nothing in terms of support.  I felt like I was the only one with this disease. I honestly thought that I might have a rare disease since there wasn’t much out there. Through BCC I met others.  When I met other women that really helped. It was a big surprise to me to learn that bladder cancer is the 5th most common cancer in Canada.

I did go through a stage of trying to figure out how I could have gotten bladder cancer. I have come to the conclusion I may have had risk factors of being exposed to a lot of second hand smoke growing up albeit the medical jury is still out on whether this can cause bladder cancer, I grew up in a really polluted environment, was exposed to a lot of pesticides/herbicides, dyed my hair etc. etc. How much all of this contributed to my getting bladder cancer is anyone’s guess. I came to the conclusion that there was nothing I could do about it and it was best to let it go.  I did get into reading a lot about alternative medicine including stuff about life lessons and learning how to make the most of it.  What all this reading did was help me let go of a lot of fear.

I’m fortunate that the second round of BCG seems to have done the trick.  I’m almost 9 years clear. I’m down to an annual cysto check.  It does get easier as you go on and remain clear.  I will admit at first, I was like a lot of people and thought every twinge, ache and pain might meant that that bladder cancer was back.  I would always look carefully in the toilet after peeing and did get a cytology check done a couple of times just to be sure. My fears lessened with time. My GP is good about having things checked out saving me a trip to the uro’s office. The only further issue I’ve had is a whomping big bladder infection after my annual cysto exam this past April. Why I got that this time when all other cystos have been problem free is anyone’s guess.

I did undertake a few changes in the hopes of increasing my chances of reducing a recurrence.  I cleaned up my diet, including more fruits and veggies, whole grains, lean meats etc.  I have cut down drastically the amount of processed, packaged goods I consume.  I try to avoid colourings, additives, a lot of sugar etc.  I drink filtered water, herbal, green and black teas. I avoid soda except for the occasional gingerale.  I now take a good multivitamin, Vitamin C,D, a probiotic, Omega 3, cranberry and bilberry.  The Omega 3 and bilberry are actually for my eyes upon recommendation from my eye doctor.  The other stuff was what I figured out with conversations from staff at health food stores and the vitamin D was recommended by the BCG clinic nurse.  Research has shown that vitamin D makes BCG more effective.  Jack has some information on studies done on this.

I also try to exercise more by walking, stationary cycling and doing yoga.  I desperately want to get back to swimming. This has been inconsistent lately due to what I’m involved in but I will get back to it.  The goal in my mind is to try to do things to help strengthen my immune system which in turn I hope will lessen the risk of recurrence. I’ve always called this “Fighting back with what I know”.  It really helps mentally as well as physically to do all of this because I know I’m doing the best I can for myself.

As for planning stuff for your life, that was one thing I made a big mistake with.  I too, avoided planning anything just in case it came back. Now I tell everyone – get on with life and get a life.  Fit the exams, BCG etc. in around your other life stuff not the other way around.  That will help with the mental shift of being a cancer patient to a cancer survivor and get you through the fear.  Plans can always be altered, rearranged etc. It is not the end of things to have to postpone a vacation to go through BCG.  Mind you it will literally p*** you off if it should happen but it is not the be all and end all.

Anyhow, I apologize for the novel but hope that my thoughts help.  All the best going forward. ((((HUGS))))

[Author]

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