My 50 y. o. husband will start BCG treatment tomorrow, for 6 weeks.
He did two TURBT at Memorial Sloan Kettering, and the first confirmed invasive T1 (lamina propria) urothelial, carcinoma, high grade, pappilary.
As I understand is not in the muscle because we caught it early?
And another area adjacent with flat carcinoma in situ, high grade.
Second TURBT was to confirm that there were no other areas of invasion.
First turbt 12/13/16
Starting BCG 2/10/17
I read the forums on BCG but all who commented there seem to have non-invasive CIS, Ta or T1
So I am a little nervous if this treatment will work for him and if delaying other possibilities will be dangerous.
I mean, I trust his doctor, he is in one of the best hospitals, but can't be at ease since not all asnwers are given
Anyone with a similar diagnosis and course of treatment to share your experience?
And what to expect with BCG besides what the literature of the hospital says?
First, let me offer an article that does a good job and covers the questions you raised and discusses the logic and alternatives. Second listed author O'Donnell is a trusted source, as are NIH published articles. This article was published in 2009.
You immediately raised the BIG question and concern of many here: WHEN is it time to stop treating tumors and remove the bladder?
Many of us struggle with that question. Remove early, and the cancer is gone. Wait a little too long and there is a chance of undetected invasion and spread.
I am at or close to the decision point - I can continue BCG or go for the RC. There is no easy answer. Other issues may help make or influence a decision - are there other health factors to consider ? Age ? Lifestyle ? Support ? Quality of life issues ?
The "WHEN" is going to come down to what will let you sleep at night.
I made an early decision to go with BCG and I question that choice daily - but I can still sleep at night.
Talk to the Doc, get a second opinion. Ask if a round of BCG would increase the risk. Only you and the doctors can determine when you are pushing the risk of invasion too far.
Best to you both,
6/2015 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Once the tumor has invaded the MUSCLE, a radical cystectomy is the way to go. The issue here is that the lamina propria is not the muscle, but a membrane between the bladder lining and the muscle. There is still a chance that the issue can end here with BCG treatment. But, as Jack mentioned, the risk is a bit higher than if the !#%@! tumor had remained in the lining.
BCG is the standard of care for non-invasive high grade bladder cancer, including and especially CIS. Your husband is being seen at one of the premier places for diagnosis and treatment of bladder cancer, so their advice should be "right on.:
As for what to expect from BCG, there are many many forum posts on the subject...go to the top of this page and click on the SEARCH box.
Jack also recently provided a link to another good article on BCG:
"Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer.
2015 article from Nature Reviews Urology.
Among the panel are Dr Lamm and Dr O'Donnell, among other recognized names.
Of major interest is a comparison of BCG maintenance schedules and outcomes. THIS IS GOOD STUFF.
Table I shows in graphic format the comparison, but don't miss the text." www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society