Alternative to Radical Cystectomy

[Kit]

Hello all, my mom was diagnosed with bladder cancer last year, had 3 TURBT and a round of BCG treaments. At the latest visit on Oct 18th to our doctor’s office after a TURBT, he recommended radical cystectomy. My mom is 77 and is extremely reluctant to go thru that. I read the documents in the European Association of Urology (http://eu-acme.org/europeanurology/upload_articles/Persad.pdf) and seems like an IMMEDIATE chemo instillation after a TURBT could work some magic in some cases. Does anyone try this approach? We are currently in a ‘cooling period’ before we will make a decision on Nov 1st on how to move forward. Any info would be very much appreciated!! Thanks!!

[Greg]

Hello Kit. The common practice here in Ontario at least is to instill Mitomycin right after the TURBT. I had it done half a dozen times. – before the cancer went muscle invasive and I had to have my bladder removed. The efficacy of the treatment depends on the stage and grade of the cancer. Get a copy of the pathology report so you know what they have found. It is also good practice to get a second opinion at a major cancer centre, if you are not already at one, by a Urologist who does a lot of RC operations. This is major, major surgery with a long recovery time and frequent infections and other annoying and more serious issues which can and often do arise during recovery. Sadly, at this point at least, particularly for high grade tumours, there seems not to be a really effective treatment, though that can happen.
Get the path report.
Get a second opinion.
Talk to folks here who can offer opinion and counsel, particularly the women who have had this surgery. They are an invaluable source of information and encouragement.
All the best. Keep us posted and let us help if we can. Jack Moon, our President can help with a second opinion if you decide to go that route.

[Kit]

Thank you so much for your reply Greg! I am glad I found this site! We have yet to receive the latest pathology report and I will call again today. We are eager to have second opinion- we went to our family doctor last Friday but he said we can only find another urologist thru our current urologist! I am helpless, until now. How can we make an appointment at a cancer centre (Sunnybrook is our nearest)? And we would love to have advice from Jack if he’s available. Many thanks again!

[Jack Moon]

Hi Kit

I sent you an email with my contact information.
All the best,
Jack

[scubalady]

Agree with others, depends on the pathology, then some serious thinking about risk and lifestyle.

Craig was diagnosed T1G3 – high grade but non invasive – 3 years+ ago. His doc wanted to do a cystectomy right there and then, Craig (after nearly fainting and thinking about it) demurred.
He had mytomyicin (chemo) instillation after his restage TurbT.
He has just completed 3 years of BCG (1/week for 6 weeks, followed by quarterly then bi-annually 3 week courses). Has been clear since the initial diagnosis.
We have taken on lifestyle changes – diet (plant based, just started that this year, had significantly reduced meat and gone organic before that), meditation, reduce stress, added some supplements (cranberry extract, miatake mushroom extract, Turmeric). We have a regular Yoga practice and walk a lot.
Who knows what in all that may have helped.

I agree that getting her bladder out is a big deal. On the one hand, delaying it could just mean she is older, and therefore potentially in a worse starting position, if it is needed later. On the other hand, the recovery will be challenging regardless. If she can avoid it altogether… Bladder is highly recurring but not 100%.

Get the path report, get the best medical advice you can find. In the end, she has to consider her health, her risk, and what she wants for herself.

Best wishes,

Jackie

(oh and I was terrified when Craig refused the cystectomy – i was in the ‘cancer – get it out!’ mindset. it is still scary because any day it can come back. but he is in great health and doing well…)

[Kit]

Thank you so much for all the replies, I am touched by your care and love. I believe my mom’s are T1G3 based on what the doctor said but I will confirm after getting the pathology report Thursday.

Jackie, I am glad to hear that Craig is doing well without going thru RC! That is excellent!! I wish there is significant breakthru in bladder preserving strategies. As for chemo after TURBT, I am not sure if my mom recieved it as I haven’t heard our doctor talking about it nor do I see it in the reports. I will find out at our next appointment.

I am sure lifestyle and diet changes help. This is one area I am convincing my mom to take up little by little. My heart is still pounding and I hope I can buy more time before we make our final decision. Thanks again!!

I will also talk to Jack. Thank you Jack!!

[marysue]

You and your mom will definitely have to weigh quality of life and/or risks with the idea of an RC. At 77 she probably faces more risks than average. It will also depend on whether she has any other serious health issues. Jack is our go to guy. I would say follow what he suggests.

[Kit]

Thank you very much Mary! Yes I am getting the latest report and will get second opinion from a doctor at a cancer center as suggested by Jack. I am so glad to have talked to him. My mom’s a little overweight but otherwise healthy, and she does not smoke nor drink. Hopefully she’s ok if we take the chemoradiation approach.

[KIOWA]

definitely get another opinion and be sure to get her pathology reports as has already been mentioned. Good luck and I will keep your Mom in my prayers.

Kiowa

[Kit]

Thanks a lot Kiowa!!

[auntybevy]

You have received valuable information on this forum and I know you will make the right decision for your Mom. All the best and please keep us informed.
Bev

[Kit]

The latest path report shows that the tumour is muscle invasive. Since my mom is still very reluctant to RC, I researched more and read some articles in North America and Europe and it seems some more conservative approaches (RT + chemo, that is) have quite high an successful rate comparable to RT.

We had our family doctor refer us to the specialist recommended by Jack the next day we got the report.

We went to see the urologist Thursday and told him about this and after talking about RT+chemo without RC for a while, quite unexpectedly, he was going to refer my mom to another specialist in another hospital. He said we can double book and just see whichever specialist comes back to us first!! My dad said my mom is growing grumpy about the whole thing but I am glad things are progressing. Thank you all!

[Greg]

Kit:
Please go to the You Tube sight on our home page here and click on the Winnipeg Manitoba link. there you will find a radiation oncologist named Dr Aldrich Ong speaking to a Winnipeg Bladder Cancer Canada meeting about some of these things. Perhaps some of what he says will be educational about what you’re thinking about.
All the best.
Greg

[Kit]

Thank you Greg! The presentation was nicely done using layman terms and explained what I have read so far. Actually we went to see the RT specialist yesterday and she said my mom is a good candidate to use the RT+chemo approach to preserve the bladder. Now I am confident that my mom will be fine without going thru the RC route. I can’t see myself this relieved without you guys’ input and support.

My next worry is how well my mom tolerates the toxicity of the RT+chemo. I hope the treatments can start as soon as possible but there will be at least 5 preparatory appointments before the actual treatments begin.

[Kit]

The 35 treatments are scheduled to start on Nov 27th although there are still 2 outstanding appointments of diagnotic MRI and CT scan – perhaps it’s my misunderstanding that those 2 scans are meant to be done half way thru the treatments. I will try to figure that out.

[Author]

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