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Husband has been fighting BC for almost ten years

2 years 6 months ago #52278 by Jack R
Mtgirl,

My similar bladder pain has been explained to me as being due to 1) a continued immune system assault on my bladder cancer, 2) increased irritation of the bladder due to the loss of considerable urothelium during BCG treatment.I am told, and tend to believe, that (at least for me) the immune system can remain on high alert for 6 months or more. Your husbands pain sounds worse that what i experience.

Suggestions to me were to drink more, urinate more frequently, and avoid food and beverages that irritate the bladder.

The suggestions have helped I also use AZO at times, it helps somewhat for a few hours. More water seems to help the most. Drinking less, or not keeping a jug of water at ready at all times, seems to make it worse.

When to call the Doc ? My trigger is when something new and unexpected happens, persistent pain, or with major urinary bleeding. When in doubt call.

I hope the simple suggestions I was given may help your husband.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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2 years 6 months ago #52277 by mtgirl
Thanks to all of you for your input. We are now three months since the last Turbts and the clear pathology report. We are waiting for the next checkup which is to come after the 3 month mark which the doctor said he may wait 6 months. Anyway, my question tonight is whether any of you have experienced low pain in the pelvic or bladder area. He has had bouts of this for the last six weeks or so. He explains it as feeling like gas pains but it isn't. Otherwise he feels just fine but these seem to come and go at least every other day for sometimes a few hours and sometimes most of the day. They are very uncomfortable. We haven't called his Urologist concerning this because we really don't know if it has anything to do with the cancer or not. I have searched the internet without any real answers.

I might add that just to be clear, as per the doctor's report, he has had HGCIS in 11/2012 and went through BCG treatment for six weeks. He had previously gone through BCG treatments in 2010 for six weeks. In 2014 he showed TA/CIS and T1HG/CIS again in April of 2016. He had BCG treaments in June-July of 2016. Then the TURBT in August which came back clear as I mentioned earlier.

Thank you for any answers you may have about the pain in the lower pelvic area. It may be nothing or should we contact the doctor?

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2 years 7 months ago #52064 by dieseldoc
Mam. I to have been dealing with bladder cancer for over ten years. I don't think I am confused. Your husband has delt with this for 10 years. I know the frustration with this. And his said if it is terminal, that he does not want to continue with surgeries. If the BCG worked on the CIS if it was CIS than doing mantenance BCG is the smart move! What would it hurt? I agree with everyone else about getting a 2nd opionion. As said CIS is not just removed in a turb, so this raises a concern with the intentions of the doctor. If the 2nd apionion agrees with the doctor then do BCG treatments untell they stop working and go from there.
I hope others understand where I'm coming from and quite possibly agree.

T1,NO,MO battling bladder cancer since 2005
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2 years 7 months ago #52060 by Cynthia
Again welcome to our forum. I wish I could get a cup of coffee and sit down and have a chat with your husband. I also have said the words I was going to keep my bladder at all costs. That was my goal and my mind was so set on it that I lost track of what the real reason was for this "war". It is not abut saving your bladder it is about staying alive. I hit the wall where it was a choice of life or my bladder and the bladder lost. I was very lucky I had not pushed the wall too far and ten years have passed and I am still here. I really do have a wonderful life and do all the things I want to do. I can honestly say that my life is not changed by my lack of bladder once I healed and got used to the new normal. If you think abou it is a little like the abused spouse that stays with thier abuser because they don't want to lose them in a way. Saying you are still married when they killed you really isn't a win is it? I am not pushing but the time to think abou this is when you can still make choices and not after the choices are no longer yours to make. Having said that all of us here support you no matter the path your blc journey take you and your husband. We are here if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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2 years 7 months ago #52059 by mtgirl
Thanks to all of you for your replies. We appreciate your knowledge on the situation. We realize after ten years of this horrible disease something drastic will need to be done. He is just so determined not to lose his bladder or take chemo. (Stubborn!!!)

Thanks again.
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2 years 8 months ago #51946 by Jack R
Mtgirl,

To my understanding, when CIS returns QUICKLY after BCG, that is considered BCG failure, and a RC is likely to be recommended. This is my situation, and even a second opinion has not (yet) clarified, in my mind, the decision of the next step for me. There seems to be a great reluctance (or inability) on the part of many docs and pathologists to determine the depth of CIS involvement and opine on how long one should try BCG or other treatment before going the RC route. The RC is a safe call for the doc. I would prefer to keep my bladder, but I'll give mine up if/when I need to to avoid metastasis.

From your description, it does not seem to be your husband's situation; he has had one bout of CIS which was cleared with BCG, if I understand correctly.

I enclose the link to a paper that, to my understanding and multiple doctor's explanations, provides a good overview of the options, including the unknowns and risks.

With all that said, your case sounds more like Flamenco's than mine. Get to a major school or NCI center and see if something other that an RC makes sense in your case.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792453/

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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