Three Month Cystoscopy

6 years 9 months ago #53585 by Mistersac
Replied by Mistersac on topic Three Month Cystoscopy
I have my 3 month cystoscopy on July 5th. Since I was considered clean after my last biopsy, and have not had any symptoms, ie bleeding or burning is this a good sign that the cystoscopy will be clean? Are there any warning indications?

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6 years 9 months ago #53584 by Mistersac
Replied by Mistersac on topic Three Month Cystoscopy
I have my 3 month cystoscopy on July 5th. Since I was considered clean after my last biopsy, and have not had any symptoms, ie bleeding or burning is this a good sign that the cystoscopy will be clean? Are there any warning indications?

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6 years 10 months ago #53454 by Jack R
Replied by Jack R on topic Three Month Cystoscopy
Mistersac,

As I understand it, you had one biopsy after the initial six dose BCG induction course, and that six sites were sampled. Correct ? A biopsy of multiple sites, including random sites, taken at one time, often checking for CIS, is generally described as one biopsy.

There is one misunderstanding of Dr. Lamm's findings: In the specific case of CIS, the following articles support a "additional round" at three months and evaluation of CIS at 6 months.

The following paragraph from:
www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html

Describes Lamm's findings, beginning in the first paragraph following the graphs (about page 9, with the article at 9 point type)
Regarding CIS"... 6 months is a preferred time to evaluate response.."

"The potential benefit of 3-week BCG maintenance deserves emphasis. Specifically, the schedule is initiated with weekly intravesical and percutaneous BCG treatment for 6 weeks, followed by further weekly combination treatment for 3 weeks after routine cystoscopy at 3, 6, 12, 18, 24, 30 and 36 months.12 Only 14% of patients completed treatment in the original study, but compliance in modern studies is high. In the population with CIS, complete response at 6 months in patients randomized to receive the initial 6-week BCG treatment only (induction arm) was 69% in comparison with 84% (P <0.01) in patients randomized to receive the additional 3-week maintenance treatment (maintenance arm).12 In the maintenance arm, complete response increased from 55% at 3 months to 84% at 6 months (64% complete response in patients with treatment failure at 3 months). Even without additional BCG, 26% of patients with residual disease at 3 months in the induction arm went on to have complete response by 6 months, illustrating that 6 months is a preferred time to evaluate response."

Also see:

Management of carcinoma in situ of the bladder, Tang and Chang, is a review of the work of Lamm and others, beginning at the header, "Intravesical BCG Therapy", which expands on the first citation about CIS and BCG.

"The role and efficacy of BCG induction plus maintenance therapy for treatment of CIS was determined by the Southwest Oncology Group (SWOG) 8507 trial [Lamm et al. 2000]"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4647140/

The articles offered here and prior reflect my current understanding of first line of attack against NMIBC CIS using BCG.

I hope this helps you and your doctor reach a decision that is comfortable to you.

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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6 years 10 months ago #53450 by sara.anne
Replied by sara.anne on topic Three Month Cystoscopy
Yes. The maintenance BCG is only for those whose cancer has not returned.....to keep it from returning. IF it has returned, there are other options to be considered..."maintenance" is not one of them.

Sara Anne

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

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6 years 10 months ago #53449 by Mistersac
Replied by Mistersac on topic Three Month Cystoscopy
Jack and Sara Anne,

As I read the Dr Lamm study it says that after the initial 6 BCG treatments if cancer is not present that a maintenance schedule of BCG is recommended at 3 months after a cystoscopy that doesn't show a recurrence. Am I interpreting this correctly. I go for my 3 month check on July 5th, and hope that my CIS is still under control. He took 6 biopsies after the initial 6 BCG treatments, and I was clean.

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6 years 10 months ago - 6 years 10 months ago #53435 by Jack R
Replied by Jack R on topic Three Month Cystoscopy
Mistersac,

I can only describe the decision I have made for me; I know all the details of my (still) NMIBC journey. Armed with the 3 document linked previously, I had a big talk to my FORMER doctor; she did not think that maintenance was needed for my papillary and CIS BC.

As I read the consensus articles, and as I apply that material to my situation, a few of the repeated points (consensus recommendations) seemed to apply to me:
- CIS is always considered high grade.
- High grade is to be treated with maintenance
- CIS status is to be assessed at 6 months, not 3 months

I was elated when I was clear at 3 months, not so happy when at 6 months the CIS was back and my former doctor recommended an RC due to "BCG failure". I did not understand that the doctor's plan was "one round of BCG then RC" if the cancer returned.

I was unprepared for the cancer diagnosis, and it took time to get up to speed on the state of treatment, as found in the hundreds of journal articles I have read, and from what I have learned after transferring my care to a renowned university with a specialty BC center.

The only recommendation I can make to others with high grade BC - because the facts of their situation are different than mine - is GET A SECOND OPINION EARLY ON IN THE BC JOURNEY, preferably at a National Cancer Institute Comprehensive Cancer Center or other recognized leader in the BC field.

As the patient, it is your choice, right and responsibility to seek additional opinions, or ask clarification of the current treatment plan. One size does not fit all.

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
The following user(s) said Thank You: cltyxx

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