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Why not BCG before bladder removal
I had large baseball size tumor (TCC) removed by operation in January. It had a small stalk and was not into the muscle. Last Monday I had two biopsies they came out as T1. Today I was told to wait for the next appointment Nov 2 for another TURBT. If malignant or other growth as the last I was told the bladder may have to be removed . If not then I would get BCG treatment to clean out the bladder. Why would the doctor wait three months and not treat sooner with BCG which is the lesser fear.I do not know why the doctor jumped to the idea of bladder removal when there is time to do the BCG now. I do not know much about life without a bladder but the whole idea just does not sound right.
Paul
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11 Replies
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Hi,
My bladder was completely clean after being treated this was outside the bladder and had no connection to it.
Paul
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Paul
I am so sorry to hear of this development. I was hoping that you were just making contact to tell us how well you were doing with the BCG treatments.CRAP ON A CRAP CRACKER !!!!!!
Thank you for your call to action about being your own advocate for your care. In your case it would have been better to have had a more aggressive Bladder Removal. So many times here, we see people who will sacrifice their life for their bladder. It appears that you would have had a bladder removal if the Dr had suggested it as the better way to go.
I do hope that the treatments work and that you can be a survivor. You certainly deserve it.
I am wishing you the best. And it appears that you are in good hands now that you are at Sloan.Thinking of you
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]Hi Everyone,
Its been a while since I last wrote in to the forum. I have developed a new primary ,so far single metastasis outside of my bladder . This was confirmed on May 28th . I urge anyone here to be relentless with your doctors if you notice any symptoms whatsoever , I sure tried. I am now in chemo with 16 more treatments due, I have taken the first two very well. I am listed as inoperable and incurable at the moment I am handling everything well. I have had a consult in NYC at Memorial Sloan Kettering . I will be continuing this regimen as set forth by my oncologist and the consulting oncologist in relation to my case. I still feel strong and able to meet this fight head on .
Paul
Hi All,
Today was my 6th BCG treatment. I am for the first time having the side effects. It smarts and there is bloody looking urine. I am trying to eat to keep my strength up. I will follow the rules for post treatment and notify my doctor in the AM. Thought I might check in.
Paul
So glad to hear you are doing well. Wishing a very good outcome for you with this treatment!
Hi everyone,
I had the first of six BCG treatments today . It was a quick process to introduce .I am following the instructions for post treatment .It has been almost six hours now and with little discomfort. I am hopeful that this works as it has for others here.
Paul
Glad to hear the good news.
While Ocovite certainly won’t hurt you (it is a multi-vitamin very similar to many sold over the counter….), it and a very similar formulation called Bladder 2.2 are just that….fairly good vitamins. Whatever caused your bladder to become cancerous happened over a long period of time…as long as 30 years ago.
We don’t know all the factors that can cause bladder cancer, except that smoking is one. But you would have had to address whatever it was a long time ago.Vitamins cannot cure cancer. A good,healthy life style is always a good idea.
Good luck on your BCG adventure.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorHi everyone,
I have had my TURBT done today with no extra or multifocal growth indicated. My doctor now is recommending BCG treatment starting on 11/30. I am relieved about this. I have been taking oncovite since the last TURBT every day. I have heard both good and bad about it but not sure if it worked or not for me . Anyway thought I would pass this on to the rest of the group as I continue my treatment.
Thank You
Paul
Paul – I defer to others on this site like Sara Anne who have a lot more knowledge and experience than I do, but from what I have read, bladder removal is not quite what it sounds like; you actually have a “replacement” bladder installed (called a “neo bladder”) made from part of your small intestine. Depending upon the circumstances of your specific situation and the skill of the surgeon, the end result may not be much different than having your original bladder although the neo bladder is likely to have less capacity. Hopefully others who have had this procedure can give you first-hand experience. Very best to you – hope everything turns out well.
T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in OctoberThank You,
I live a long way from my hospital and I had 15 minutes of consultation with my Doctor. It did not hit home until I did. Thanks soo much for being there for me. The way I am I might not have slept tonight without your kind response. I am an outdoors person and I love being in the woods.
Paul
So sorry to hear about your issues.
BCG cannot be given if there is any chance that there is even irritation in the bladder lining. You have just had several biopsies and have healing open wounds.. The BCG would be absorbed into your bloodstream and you could be one very sick guy. That is why there is such a delay between biopsies and beginning of BCG treatments. Several times while I was undergoing BCG there was irritation of the bladder FROM THE BCG and we had to wait a week or two before resuming treatment.
Sometimes, bladder cancer just keeps coming back, over and over. Yours appears to have returned at least once. IF they find more tumors at your next exam, the urologist will probably discuss the option of bladder removal vs BCG. The issue is that if the bladder lining just keeps “popping out” tumors, they could easily get out of hand pretty fast. This is a difficult decision and will take a lot of back and forth discussion with your urologist, and, preferably, a second opinion at a really good bladder cancer center.
If you read the posts under “invasive” here in the Forum, you will find that there are lots of people living very full lives without a bladder. It does take some adjustment, but they are scuba diving and driving race cars….
We will keep really good thoughts for you
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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