Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › Bladder preservation
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KIOWA.
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September 22, 2016 at 11:54 pm #8432
Linda V
ParticipantHello bladder cancer community.
My husband Martin is 67 years old and was diagnosed with muscle invasive bladder cancer in early springtime. He recently finished 4 cycles of chemo prior to radical cystectomy … or so we thought. When we saw his oncologist post chemo, she said to ask his surgeon about bladder preservation treatment as she thought Martin might be a good candidate. Martin had a cystoscopy yesterday, with a radiation oncologist in attendance; both he and the surgeon think the same as the oncologist, which is that preservation is an option.
This treatment is not offered at many cancer centres but Princess Margaret in Toronto happens to be one of them. It will involve almost two months of daily (5 days a week) radiation plus weekly cisplatin chemo, which will inevitably be very rough.
Has anyone taken this route?? The posts I have read on this site all deal with radical cystectomy for MIBC and the various diversion options…
HELP!!!
Linda
September 23, 2016 at 2:16 pm #21023marysue
ParticipantHi Linda:
Welcome to the Bladder Cancer Canada community but sorry to learn that you and your husband have need of us. I have a habit of saying “the club that no one wishes they belonged to.”
I personally have not had to face the option of bladder removal/preservation like your husband but suggest that if you haven’t done so already, contact Bladder Cancer Canada via the toll free number, leave a message asking if anyone that has gone this route is registered with BCC. We do have a number of patient volunteers that will speak to other patients about the options they chose. Failing that, someone in the Toronto office might possibly be able to find a way to connect you with someone that has either done this option or has had it presented to them.
People can correct me if I’m wrong, but I’m under the impression this is something relatively new that is being explored as an option for bladder cancer care. Each treatment option carries its own set of risks, side effects and final effect on a person’s quality of life post treatment so it is imperative to get as much of that type of information from your husband’s medical team in the beginning so that can all be weighed before making any decisions.
The radical cystectomy surgery is a big one as you are probably aware and there is real risk of complications post op. However, most people get through it in the end and life resumes reasonably well. A lot depends on the urinary diversion chosen – the internal neo bladder is a longer surgery than the outside pouch option, and any other health issues that are already present.
Since your husband has already undergone chemo, I suggest that you and he take a look at how he as tolerated things so far and discuss how much more he thinks he can take based on the number of future chemo/radiation treatments the docs think are necessary. Anyhow…these are my thoughts. I hope this helps somewhat. Take care and let us know how it goes. (((((HUGS))))))
September 23, 2016 at 3:19 pm #21024Gord
ParticipantHi Linda. So glad you found the BCC site and have been reading the posts. A good community of people on here willing to offer up their experiences and insights. I did not have bladder preservation treatment. If you saw any of my other posts you will know that I had an RC with Neo three years and three months ago and am still cancer free. I was diagnosed pre and post surgery with T2a BC, with no evidence of lymph node involvement or spread of the disease beyond the bladder, and was otherwise healthy, unless you count high cholesterol. I guess if I was in your shoes, I would certainly want to get a 2nd opinion regarding preserving the bladder, perhaps at either Sunnybrook or at McMaster/St Joes in Hamilton. In the very little reading I have done on this it seems bladder preservation is often used mainly for patients who are adamant about not having their bladder removed and for whom the risk of surgery is greater than the risk of the disease itself. Beyond the aggressive radiation/chemo treatment, there can also be more more frequent cystoscopies. And then there is the issue of possibly reduced bladder size post surgery if they go that route. I am sure you will be aware of those things. Bladder preservation is not an option that was presented to me (@ McM/St Joes), even though it seems I was clear of tumours before surgery. To be truthful, at age 53, I just wanted to get rid of my cancerous bladder, and trusted that whatever resolution I ended up with would allow me a return to a ‘normal’, and long, life. And I have to say that is true so far. After three years, I am healthy, active and enjoy relative peace of mind. Am I reminded every time I sit down to go to the bathroom that I once had BC? Yes. But now I am really not worried at all about cancer’s return. More worried about my family’s propensity to heart disease, and figuring that is next on my agenda! The suggestion to contact the BCC office and ask to speak to someone that has had bladder preservation treatment is a very good one. Keep asking questions as you make your decisions. We are all here for you!
October 5, 2016 at 12:59 am #21050rock2013
ParticipantHello and welcome, when I was diagnosed in 2014 there were discussions with Oncoligists (Chemo and radiation) about the possibility of trying to save my bladder. The urologist/surgeon did not quite agree. I made the final decision. My cancer was high grade stage 3 and muscle invasive and agressive. While aggressive chemo and radiation would have shrunk tumors but cancer can move fast and it could have been risky. Gordon had many words of wisdom. I am in my 3rd year post surgery while not cancer free all the surveillance SCANS did not show any tumors. It will be 5 years before I am declared dancer free. This is the Ottawa cancer Centre protocol.
Best of luck
October 27, 2016 at 10:32 am #21105Linda V
ParticipantThank you very much marysue, Gord and rock2013 for responding to my cry for help and offering support, advise and opinion. We also reached out for help to Ken Bagshaw, who was terrific in connecting us with people to speak with who have experience with the three types of diversions. However, Ken was unable to find anyone who has chosen the chemo-radiation route!
I found the period of indecision very stressful and we delayed making the phone call until the last possible minute – but in the end decided to stick with the original plan of radical cystectomy. Then came the next decision: ileal conduit and urostomy vs neo-bladder! From much reading of forum discussions, we have concluded that pretty much everyone is content with the choice they made!
Martin’s surgery date is fast approaching: next Wednesday, November 2nd, which happens to be our 31st wedding anniversary – not sure whether to laugh or cry. Pre-admission was three days ago and the senior nurse who met with us did a pretty good job of promoting IC over neo-bladder. She emphasized all the flushing and self-catheterization and UTIs and blockages and incontinence… yet we have read reports from folk who have had neo-bladders for 2, 4, 10 years who have not had these problems and who hardly catheterize at all. Sigh. So we are still the great undecided! Martin’s surgeon told us we have until the morning of surgery to make the decision, but the nurse said they need to know sooner as the instrument trays are different for the two types of surgery!
It’s comforting to be connected with BCC and its supporting group of people, many of whom have ‘been there, done that’!! Please think of Martin next Wednesday…
October 27, 2016 at 2:23 pm #21106marysue
ParticipantHi Linda:
Good to know that you guys did decide on step one. RC versus bladder preservation. Now as you mentioned, the biggy decision – which diversion? As you already know from talking to others there are pros and cons to each diversion.
While I haven’t had to go this route what I’ve learned from people in my support group is that it seems to come down to a lifestyle preference of which system will prove easier for them to manage. Some prefer the internal neo so they don’t have to fuss with outside equipment and are okay coping with any incontinence while others prefer the outside pouch.
One gent in my group was given the choice of options neo versus IC and he chose the IC (outside pouch) mainly because he felt he could get more sleep because he attaches a night bag when he goes to bed and doesn’t have the worry of waking up in wet bed sheets. He also felt that he could manage and control things better from the outside. He didn’t want to have to self catheterize either.
I had two other gents choose the neo bladder because they wanted to be more “natural” and not have outside equipment to deal with. I will admit that their docs were pushing them to accept the neo as they called the neo the “Ferrari” versus the outside pouch being the “Honda Civic”. I don’t think that is fair for docs to do this but in the end I think these guys would be better off with the neo because of their age, occupation and lifestyle.
So yeah, tough call to make but as mentioned I think it is coming down to a lifestyle choice. If you haven’t already done so, I suggest doing it the simple way; get a sheet of paper and based on what you know about each diversion write down the pros and cons from Martin’s and your perspective NOT the doctor’s and see how that works. I suspect you will find the answer.
Take care and let us know how it goes. (((((HUGS)))))
October 30, 2016 at 11:32 pm #21121Gord
ParticipantHi Linda and Martin. Just thought I wanted to respond again after your chat with the nurse at your pre-op, as one who lives with a neo bladder. Was she a nurse that was fairly familiar with what both IC and Neo recipients experience? Maybe so, but 3.5 yrs on, I do not feel overwhelmed with all the things she mentioned. I think for sure that both have their pros and cons, advantages and disadvantages. As someone earlier in this thread said “you get used to what you get!” That is very true. I guess I just wanted to say that yes, the surgery for the neo is longer and more complicated than for an IC. Therefore recovery can take longer, and probably will. There is the initial period of recovery where yes, you are flushing out the catheters in those early days – Martin will come home with those and they will come out a few weeks post surgery. Then there is the training period for the neo bladder, where you deal with incontinence as the bladder, and Martin, learn the new ways. Once I was past all of that life did return to a new normal, and I really think I enjoy a life fairly close to what I did before BC and my RC and all that. The difference is I sit down to go to the bathroom every 3 hrs or so, night time included. Interrupted sleep is a drag, but I tend to go right back to sleep after waking to void. I now do that without an alarm, for which my wife is very grateful! I am however, one of thise neo recipients that regularly self catheterizes, – due to the design of my neo I tend to retain, and am not always able to empty my neo completely. Just had two infections, in the months after the surgery, a couple of minor ones since, that were handled with antibiotics. The mental thought and block of self cathing was initially hard to overcome, but now it is a regular part of my bathroom routine 1x or 2x a day, and no problem at all. This only started in yr 3 with my neo. Did not have to self cath during the first two years, except very occasionally. Hint – it is much easier to self cath without a prostate gland, which will be removed during the RC. So. Is a neo better than an IC? Hard to know, as I have only neo experience. So if it is indeed a choice you get to make, that is my two cents worth. A pro and con list and what kind of lifestyle you want to have after this are important points to consider. Rooting for the two of you as you go through this week and the weeks to follow! I remember feeling good to get to this point, because the bladder would be gone, the surgery over and the focus was on recovery and a return to a new normal. Keep us posted as you are able!
June 3, 2017 at 4:55 pm #21711KIOWA
ParticipantPersonally, I would have my bladder removed and use an external appliance, commonly referred to lovingly as a bag. Best wishes
Kiowa
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