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BCG Treatment

EODMB
Posts: 2
Joined: Nov 2017

Hi, I'm a newby with questions; I have been recently diagnosed with bladder cancer.  After two TURBTs my pathology results were as High-grade papillary urothelial carcinoma.  My doctor has recommended BCG treatment once a week for six weeks, then after a six week break we'll take another look and make determination as to the next steps. I don't have any idea how this is going to work out and what I can expect during this six week treatment.  Any advice would be greatly appreciated.  Thanks, 

MeinMississippi
Posts: 39
Joined: Aug 2017

On Thursday I go for my second cystoscope and removal of a small mass in my bladder and of course a biopsy. I don't have any experience with bladder cancer at this stage, but I was diagnosed with uterine cancer in August. I had a total hysterectomy and that cured the uterine cancer per the gynecologic oncologist. I noticed this discussion board sometimes takes a little longer to respond to posts.  I mean no disrespect when saying this. I usually post on the uterine cancer board, and of course that is all women, and we yap it up over there, so I'm used to seeing most questions answered relatively quick..lol. However, I'm sure running through other people's posts you can find some answers to your questions. These boards have so much valuable information. I hope someone can give you a little idea of what you're looking at.  It means a lot to get answers from people who know exactly what you're going through. Getting told you have cancer definitely produces anxiety and for me it just was a diagnosis I never expected. Good luck to you. I hope everything goes as smoothly as possible!  

GingerMay's picture
GingerMay
Posts: 121
Joined: Sep 2016

I think there is a lot of good info to browse here, but agree that this board seems to be less "chatty" than others. So, I have some chatting for you. I am not the one with bladder cancer but my husband is and I have been very close to him as he went through BCG. 

First, in my opinion what you can expect is to feel tired throughout the duration of treatment. You may get a bladder infection too or experience some minor blood in urine. I believe also you may have some minor irritation locally for 1-2 days but it goes away - until the next trestment.  

Second, administration of the treatment itself only took a few minutes. It was uncomfortable and probably a bit embarrassing too. But it was over pretty quickly. Some doctors may tell you to roll around or rotate to make sure the treatment covers all inner surfaces of the bladder.  You will probably be told not to urinate for 2 hours afterward.  When you do, you will be advised to put a cup of bleach into the toilet before flushing. I believe this is so others in the household will not come into contact with the live medication. 

Speaking of contact, you will likely also be told to use protection for any intimate contact throught the course of your treatment and for 6 weeks after.  This is precautonary in the same manner as bleaching the toilet. 

Last, not sure how effective it is overall but believe it is the best the Urologic Cancer Society of america has right now as first line treatment.  It can help prevent a recurrence and also help reduce the aggressivemess.  I say "help" because I think the overall benefit offered is only somewhere around 15%.  I think my husband decided to take it for peace of mind knowing he did everything he could.  (He is otherwise very healthy, was never a smoker, and had none of the risk factors..... oh the unfairness of it all!) 

Ask your doctor questions.  I made a long list in advance. Things like long term side effects, interactions with other things, what to expect short term, restrictions, and whether taking this treatment now would rule out other treatment options in the future in the event of recurrance.    

Blessings to you.    

 

     

EODMB
Posts: 2
Joined: Nov 2017

I want to thank both of you, (MeinMississippi and GingerMay) for the response and wealth of information.  For you MeinMississippi, I wish the very best to you and hope your second cystoscope and biopsy went well. GingerMay: your information was invaluable to me as I have yet to start my BCG treatment (I start tomorrow).  I hope your husband is doing well and will add him to my prayers.

 

Blessings to you,

Loko at Work's picture
Loko at Work
Posts: 1
Joined: Feb 2018

I have Transitional Cell Cancer, originally found in my right kidney which my right kidney now has been removed. I have scopes every 3 months and tumors are removed. But this thing is not giving up, Doc has recommended BCG Treatment and my first is tomorrow morning. After all the things that I have endured, much the same as all of you, I am scared beyond belief! Only of the application. I had a cath in for two weeks, which was rough, but this one really scares me. Just being awake for the insertion.....Sorry guys and gals just need to whine right now!!

Teddybear2
Posts: 1
Joined: Mar 2018

I just finished the first 6 weeks of bc g.  I started with side effects on the 3rd one.  I'm now 3weeks post these treatments and still having hourly frequency, burning and pelvic pain.  My Dr says that's good as it means it's working.  I'm just miserable and on verge of years as I can't do anything but visit the bathroom hourly. I go for custom to check in about 4weeks. I'm hoping for good news.  My question is will i improve in frequency?  I still work and it's hard

GingerMay's picture
GingerMay
Posts: 121
Joined: Sep 2016

First, congratulations on completing treatment.  Second, I'm no expert, but I wouldn't wait for 4 weeks to get checked out again.  If you are miserable and on the verge of tears due to pain and burning three weeks past treatment, I wonder if you may have an infection.  A urine test should be able to indicate this - without need for a scope.  My husband got one, and I understand it is a side effect of BCG. 

I also am sure everyone's body will react differently, but from what you describe I would expect these symptoms to be reducing by now.  I also think you could have some "minimal" effects (increased urgency) for several months following treatment but not to the point of severe pain that disrupts your daily routine.  

isonabend
Posts: 1
Joined: Mar 2018

I have read thru the posts ...so first, I want to thank all who post of their experiences. Tremendous knowledge and comfort to share.

Tomorow i go in for my 3rd TURBT procedure.  The pathology for first 2 procedures stated that tumors of 2-5 cm were removed and biopsied.  The tumors were identified as papillary urothelial carcinoma, very low grade and non-invasive.  In the world of tumors, the doc says mine are more nuisance than danger.  After the 1st procedure, no further action was recommended.  My 1st follow up check up revealed 2-5 cm tumors ... 5 small tumors.  The doc added a dose of Mitomycin at the conclusion of the procedure.  Inasmuch as the doc stepped up treatments, my searching around brought my attention to Rick Simpson Oil (RickSimpson.ca, marijuana oil).  I consulted with my docs ... no-one thought it would do any harm.  the anecdotal info on the oil was sketchy, but there were some results to look at. This weeks 1st follow up check up (after 2ns TURBT) revealed a recurrence of tumors.  Doc described them a 8-10 spots ... smaller and more numerous than before.  the procedure is to zap them this time.  He is recommending BCG, which alarms me, and more so, as I read thru the various posts.  I am struggling more mentally than physically.  I know i am not in any current health danger, however, i am leary of the treatment and its affects. Finally, the tumors are of such low grade that the doc is not sure the BCG will treat it.  I discontinued the oil since it (seeminly) did prevent the tumors.

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