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Recent Diagnosis and treatment options 4/30/18

2 years 4 months ago #55221 by Jack R

Welcome to this site, sorry you get to join us.

Each of us has a somewhat different story, and one size does not always fit all.

I recently finished four - three week cycles of Cisplatin/Gemzar chemo as neo-adjuvant therapy prior of a planned radical cystectomy.

My initial question way, "why allow 12 additional weeks and give cancer time to spread ?". The answer was given to me in two parts: 1) Cancer may have already spread, but cannot yet be detected. Chemo can fight that unseen spread if it exists" and 2) Following the RC you may not be healthy enough to complete a course of chemo for a few months, so now is the best opportunity at prevention of spread."

I read much of the current information (from Reliable sources only) and agreed. I saw a chance of immediate benefit in addition to a statistically better long-term outcome. I cite one reliable source below: it discusses the choices involved in making the decision. Much more info is on the web - just be careful of the source of the info.

One size does not fit all. Since I have only one kidney (and a couple of other issues) , there was a chance that I would not be able to complete a full course of chemo. Chemo afterwards might not be possible, due to some potential kidney damage. Each of us has a different story and we need a doc and care team we can trust to help us find the best options.


In my evaluation of my options for my situation, Neo-adjuvant chemo seemed reasonable, AND I trust my doc.

Best to you as you decide,

What's with this Bleeding ? 6/2015
DX: 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...

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2 years 4 months ago #55219 by Jen

Thank you for your reply and the warm welcome.

I understand and agree with the radical cystectomy.

My clarity is missing on the Neo-Adjuvant Therapy piece. I was told there is a decrease in the re-occurrence rate adding the Neo Adjuvant - I am happy to stack the deck in my favor!

My concern is the second TURB so quickly and while discussing options this protocol was never mentioned.

In my continued reading here on the forum it is a common treatment.

Wondering how many have this treatment followed by the radical cystectomy and how many proceed straight to surgery?

Again - thanks and best wishes.


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2 years 4 months ago - 2 years 4 months ago #55218 by Alan

Welcome to our "special" group!. The "my current Urologist) wants to start Neo-Adjuvant Therapy - schedule a second TURB within the next 3 weeks, 3 rounds of chemo followed by the radical cystectomy." is somewhat a standard treatment. On that comment I am talking about the chemo and neo-adjuvant therapies. I have read about different amounts of chemo rounds etc but, it certainly seems to help prior to the surgery. I also have read some go straight to the surgery. When the cancer is muscle invasive radical cystectomy is the "gold" standard. On his comment that this disease is over treated I am not sure what he is talking about and I also may have misinterpreted some of this discussion. The cystectomy needs to be done. This is treatable and beatable. Keep asking away as others will join in.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 4 months ago #55216 by Jen
Firstly, what a wonderful forum. I have read many, many posts and feeling better about this diagnosis.

I am a 57 year old female, non-smoker with no previous medical issues.

It has been less than 6 weeks from my first urology appointment to now having my pathology exam and a course of action. This included 2 delays in the TURB date - so it seems I am on a fast track.

Simply, I am stunned by this diagnosis.

That being said, I am now thinking more clearly and researching to become an informed patient for my next appointment May 11, 2018.

From the pathology report: Invasive papillary urothelial carcinoma, high grade with sqamous, "least pt1"

From the CT scan - the cancer has not spread to any other organs, though it was a fairly large tumor - in the words of my boy centered household - the size of a lacrosse ball or a peach.

Last Thursday I had TURB, a stent inserted and they did BCG for an hour.

Monday morning the pathology report returned, I spoke with my Urologist and was told I needed to have radical cystectomy surgery, scheduled ASAP. Told this is a treatable disease with a surgical cure. Consulting with my Urologist we decided on a new doctor and he made the introductions.

Tuesday (yesterday?, things are a bit of a blur) my new Doctor (communicating via my current Urologist) wants to start Neo-Adjuvant Therapy - schedule a second TURB within the next 3 weeks, 3 rounds of chemo followed by the radical cystectomy.

All of the information till yesterday I was told this was a surgical disease and would be treated as such.

My current Urologist stated this was a 'controversial' therapy and some consider this over treatment of the patient.

I am hopeful that someone here maybe able to shed some light on this change in direction. Perhaps have some experience they could share or links I could follow.

Thank you in advance for any guidance you can offer and this wonderful site that has helping me navigate this new world.


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