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Husband considering not doing BCG treatments

3 years 3 months ago #49318 by Flamenco.
I would definitely do the treatments. In my case the symptoms were short lived, and although I needed time off work the days of the treatment I was back the following day. My best tip for fast recovery from the treatment is to keep drinking lots of water - it seems the more dilute the urine, the less pain on passing urine, and the faster the symptoms subside, although it means you are making many many trips to the bathromm.After each bathroom trip - I try to drink a glass of water.

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3 years 3 months ago #49307 by Nix
I certainly agree with Sara Anne and Alan. I was diagnosed with CIS, had 24 BCG treatments, with all but two being 100% BCG. Yes I had some with some side effects.
I did not have the tiredness, but my bladder was pretty beat up from the BCG. I had frequency and some burning, but nothing can be better than 8 years Bladder cancer free.
I would do it all over again.
I was told BCG is most effective on CIS, so I certainly would recommend doing the series of BCG.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
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3 years 3 months ago #49305 by pjm
I'm 67 yoa and finished the series 6 about 1 month ago. Only side effect was the second treatment- flu like symptoms for 6 hours. Otherwise all good with BCG.
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3 years 3 months ago #49255 by sara.anne
I suspect that your husband is very discouraged and maybe even clinically depressed. And for good reason...he has been through a lot.

However, I would agree with Alan (I usually do!) that BCG, while not a lot of fun, is certainly do-able. And, if he doesn't do BCG, a diagnosis of CIS means that he is heading straight for bladder removal or worse, and that is definitely not something he wants.

I was able to get through the entire series of BCG treatments, although at a reduced dose by the end of the maintenance series. My main side effects were fatigue...and I suspect this was not just from getting up at night, burning, and frequency. However, CIS also causes many of these symptoms; by the time I was through with the treatments I was almost completely back to normal. I have had friends who have gone through traditional chemotherapy and I would do BCG ten times before I would do that!! Other than the afternoon of the treatments, I was able to lead a normal life doing all the activities and jobs that needed to be done. I consider that BCG probably saved my life. And it was well worth a few days' discomfort once and a while.

I, too, have had multiple different cancers (breast, bladder, and malignant melanoma) and honestly feel that I have more than paid my dues to the cancer gods! But thank goodness I am still here.

I would encourage your husband to at least try the BCG. IF the side effects are too much for him he can always quit...and will have the advantage that even a few treatments can give him. It is well worth it


Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 3 months ago #49254 by Alan
Legal,

I am sorry to read about all the trials your husband has had. He has more than his fair share of trouble. We are glad you found us.

I won't say BCG is a walk in the park, but most of us would say it is doable and better than Chemo or radiation. On this one radiation is normally discouraged anyway. Most of us as individuals have had varying experiences so I will summarize as an "average experience" realizing there is no such thing. Some fatigue is usually associated but, I believe most of that is caused by loss of sleep do to continually having to get up from voiding due to irritation. For me it lasted 1-2 nights until the next treatment. Pain upon urinating would last about 24 hours. I also had some mild spasming. Some of us have a little bleeding. There are some meds to help with any pain. I was lucky and was able to avoid those.

Has he gone for a second opinion? One that sees a lot of bladder cancer as so many practices do mostly prostate such as a university or teaching hospital? Also, a TURB (transurethral resection for a biopsy) is often done but, the prostate complicates things. Anyway, the bladder cancer is beatable and doable.

Keep asking questions, others will chime in. Our hearts go out to both of you!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 3 months ago #49253 by legalpoodle
My husband was diagnosed last May with carcinoma in situ bladder cancer. He went to the doctor as a follow-up on his prostate cancer and the subsequent incontinence. They found the cancer while doing a cystoscopy to determine why he was incontinent more than 1 year after prostate surgery.

This is his 4th bout with cancer - all different types. His first cancer was in 1988, then 2006 followed by 2013 and 2015. Each one is unrelated.

He has been reading up on BCG treatments and is seriously considering not doing the recommended treatments. After his prostate surgery, he was told they did not get it all and refused radiation (in part due to previous radiation in the same area and all the difficulties he had). He is 73 years old and tired of the constant fight and discomfort. In June, he suffered a bacterial infection, from which he almost died, and spent several days in the hospital and a 6 week recovery. He's very concerned about the treatments, side effects and whether he can do all that will be required of him to protect himself and others.

Looking over the forum has helped, but it also generates further questions.

1. How long after the initial series of treatments does it take to regain one's strength and stamina?

2. What is the absolute worst side effect from the treatments? The flu-like symptoms, pain during urinating, something else?

3. Is there anything a person can do prior to a treatment to ease the side-effects?

This is not our first experience with cancer, but it is our first experience with this type of treatment. We've been through surgeries, radiation and chemo and this seems like a considerably lesser treatment in comparison. We are well aware of the outcome if he choose not to have the treatments.

Thanks.

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