Sorry that you are both having to go through this. I am still a bit confused....are you saying that, although the cancer has come back several times, the last cysto showed none? (BTW, CIS is always high grade....it appears sort of like a rash on the surface of the bladder and cannot be "removed" like a solid tumor can, which is why BCG is so important.)
Is the urologist recommending an RC because bladder cancer has returned so many times even if it is not showing up right now? I can sort of understand that he might recommend this, since CIS is not to be taken lightly.
If this is indeed the situation, I would heartily second Jack's recommendation that you seek a second opinion at a place that sees LOTS of bladder cancer cases, such as a major medical school teaching hospital or NCI Cancer Center. They might very well have some good ideas on potentially effective treatment that does not involve an RC.
Please consider this.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I guess I didn't explain my situation very well before, but I have a question. In April when my husband had another biopsy it came back high grade CIS. It was non invasive so the doctor removed it. Then the doctor sent us to the radiologist and the oncologist. My husband refused treatment of that nature but said he would go through another six weeks of BCG instead. So in June he started six weeks of BCG. Then in August he had another TURBT. The pathology report came back clear and no cancer showing! The nurse said the BCG had done their job. How can this be? The doctor has told him he is terminal now with the cancer and that it will return. We are both very confused. We know that for the last ten years it has come and gone but it has never been this serious. He has gone through the BCG treatments twice before, once in 2010 and again in 2013 and it has always come back. How can he be terminal if there is no cancer showing? He has had no side effects from the BCG except fatigue. My husband refuses to have the cystectomy which they say is the only option he has left.
I was diagnosed in 2006 with high grade ( but no evidence of CIS) and after TURB and treatment with Mytomycin C,stayed clear until 2012, when CIS appeared.Following BCG treatment, I have remained clear so far.
The usual treatment for CIS is BCG and this can be very effective in preventing recurrence. The important thing as you already now is to keep on top of checkups and I would ask your team about doing maintenance BCG treatments.
If CIS reappears following BCG treatment, then yourselves and your medical team need to make some major decisions on surgery options.
It seems from your post that he has just recently been diagnosed with CIS for the first time. And that for a number of years he has been free of the previous low grade bladder cancer.
From my extensive reading about CIS (a subject I take most seriously) his situation seems a bit unusual.
If that were my history and current diagnosis, I would immediately RUN to the nearest NCI facility. I would want a opinion and a treatment plan from a bladder cancer specialist at the NCI institution. See LillianG's post on finding a NCI center.
A diagnosis of newly found CIS, without mention of depth of involvement, after years of being cancer free, would leave me wanting a lot more information.
Your current Doc will likely support seeking a second opinion.
Wishing you both well.
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
Thank you for your reply. We are assuming the maintenance BCG treatments may be what the doctor will do. We haven't talked to him since he called with the pathology report but he said at that time that he would see my husband again in about 3 months so we will know more after the next appointment. He will do a cysto then.
Would your husband consider BCG maintenance treatments? It sounds like he has had only the 6 induction BCG treatments. Statistics show that having the maintenance treatments after the 6 induction BCG treatments is more effective and reduces the rate of recurrence. Also, you might want to consider getting a second opinion at an NCI facility. You can use the Help->Researched Resources->Treatment Center Finder links in the header of this page to locate an NCI facility in your area.
5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.