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T1 G3 and BCG treatments

7 years 6 months ago #52094 by winterwhite
Replied by winterwhite on topic T1 G3 and BCG treatments
Hi Mike,
Thanks for posting, I appreciate any information folks want to send my way. I checked out Steve Kelley's Blog, the guy has a great sense of humor, I love it. I did read several of his posts this morning, but I will save the rest until later today, when I have some time to really concentrate on them. Have a great day!!!
Joanne

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7 years 6 months ago #52093 by winterwhite
Replied by winterwhite on topic T1 G3 and BCG treatments
Hi Jack,
Thanks for your reply. The urologist told us that when you have a T1G3, he always does a re-resection about a month later to make sure the pathologist's report is correct. Re-resection is a protocol recommended by the American Urological Society because a number of stages and grades of bladder cancer are misdiagnosed from first TURBT. My husbands initial diagnosis was correct. What I should have said was that my husband was negative for anything greater than T1G3, the urologist used the word negative. This is a strange, new journey for my family and we are grateful for any information, thoughts and opinions people have. Thanks again, Jack.
Joanne
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7 years 6 months ago #52092 by Jack R
Replied by Jack R on topic T1 G3 and BCG treatments
Winter,

Based on what I read here, and discussions with others in the bladder cancer group at the clinic, the high frequency "terrible side effect" from BCG reported by some sites on the internet seem rather questionable.

BCG is accepted as the primary treatment for superficial BC, and individuals do react differently. IF symptoms are or become terrible, get support from the care team. Drink LOTS of liquids afterward. Ask for pain meds if needed. Start AZO early.

Don't let the worst cases on the internet discourage BCG, (or other recommended therapy).

I lose 2 to 3 days to each BCG treatment - cramping, urgency, frequency, spasm, and a need to have a bathroom within 5 feet or less at all times. It might be compared to preparing for a colonoscopy, but extended to 2 or 3 days. Not a lot of fun,but doable.

I notice that the recent TURBT "came back negative, still T1 G3" ?? If negative , (no sign of disease) why is the staging still T1 ?? If there is no cancer showing, why not T0 ??

The internet is good for research, IF you stick to reputable sites such as major teaching hospitals and the National Institutes of Health published reports.

thanks for being there for your husband.

Best
Jack
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

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7 years 6 months ago #52091 by Mike M
Replied by Mike M on topic T1 G3 and BCG treatments
Hello and welcome to the forum. Understand how overwhelming the diagnosis can be, but you've come to the right place to learn from those who've "been there, done that". I was diagnosed with T1 G3 and CIS earlier this year and will be completing my second 6-week BCG course next week. My BCG side effects have been very tolerable.

One internet site I found helpful was the blog by Steve Kelley entitled, "Got Bladder Cancer". Steve was diagnosed with T1 G3 and has gone through multiple BCG treatments and thankfully has been and continues to remain cancer free after several years. Steve describes the whole BCG experience (with some much needed levity) and includes useful recommendations on what you need to do before, during, and after each treatment. He also has other information regarding BC which is helpful too.

In any case, don't be reluctant to ask questions or share concerns.

Regards,

Mike
12/15 - Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 - Began BCG following NCCN and SWOG guidelines
2/19 - Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 - Nephroureterectomy to remove right kidney/ureter
9/19 - BCGx33 completed
2/20 - Invasive HG urothelial pT2 in prostate stroma
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7 years 6 months ago #52088 by winterwhite
Replied by winterwhite on topic T1 G3 and BCG treatments
Thank you for the information, Sara Anne, I will check out the saved posts.

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7 years 6 months ago #52086 by sara.anne
Replied by sara.anne on topic T1 G3 and BCG treatments
Welcome to our Forum! And feel free to ask all the questions you want..someone will try to answer them. There is a lot of information about BCG on this Forum; there are some specially saved posts on the subject at the very top of the topic "Non-invasive Bladder Cancer."

To answer some of your concerns about BCG. It is very do-able and most of us have minimal issues with it. Since it is instilled directly into the bladder it does NOT have the really unpleasant effects of chemotherapy. Since the purpose of the BCG is to "kick up" the immune system, particularly in the bladder, the side effects do increase as the number of instillations increases, and this is what you want to happen. It shows that the BCG is doing its job.

For the first administration, probably the only noticeable effect will be urinary urgency for some hours after, maybe some cramping or bleeding. The next most common effect, particularly after more treatments, is fatigue, especially the day after. Most people are able to work the next day.

If side effects do become too uncomfortable, it has been shown that lower doses of BCG are still effective. I was at 1/3 the original amount by the time I finished my two years of BCG maintenance.

I am really grateful that this is available. I am now over 8 years cancer-free!!!

Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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