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Bladder Removal Surgery

1 year 11 months ago #52542 by sara.anne
You are going to be really glad that your physical condition is so good. It will make it much easier for you to recover from the surgery. I understand that this is not for sissies!

Sometimes chemo is given prior to surgery (if there is any suspicion that it might have started to spread outside of the bladder) and sometimes after, it the surgery shows that it has gone a bit further than expected.

You are being treated at a University medical center where the standard of practice is expected to be very high. Whether or not you need a second opinion in your specific case is a personal decision......depending on whether you are completely comfortable with the diagnosis and recommendations,.

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 11 months ago #52541 by mammoth3128
Having my bladder removed next month or so. Non invasive but 15 bcgs did little. Had a minimal invasion in the Urethra. turbt hopefully took care of it according to UCLA Dr Reiter. However may limit me to considering neo-bladder option. Prostate out 3 years ago robotically, no issues and so far appears to be cancer free. Assured that the prostate CA did not lead to my Blad CA. I did take testerone injections 4yrs ago which most likely fed or caused prostate ca.
I am very fit, ski 70 days a year, hit the gym most days, play tennis. Im 69 but most people think I'm 59. never smoked, don't drink. 6' 185 lbs.
Wondering if a 2nd opinion is even warranted as there appears only one option? Doubt i can do much better than my team at UCLA.
also wondering post surgery is chemo is sometimes a treatment?
thanks, Scott

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1 year 11 months ago #52504 by aseldin
Hi Sara, I am deciding between two chemo treatments. Once involves the use of two drugs Gemcitabine and Cisplatin and the treatment is for 12-16 weeks. The other one involves four drugs and is called MVAC. This treatment is for 6 or 8 weeks.
Do you know the pros and cons of each one.

Thank you,
Alan

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1 year 11 months ago #52502 by sara.anne
So sorry to hear your news. But you are doing the right thing by seeking second opinions on your course of treatment. I am afraid that we are not in the business of recommending doctors....we are not physicians, just survivors and caregivers.

However, I can give you some advice...and it is worth what you paid for it :laugh: The most important thing in picking a surgeon for a complicated surgery such as this is his EXPERIENCE. You need to ask how many of these surgeries does he do in a year? Five or ten is NOT enough. He should do at least 100 or so. What options does he offer you?
There are three potential types of diversions that a patient could have

(Here is a good summary of them
my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion )

Sometimes a patient's condition or the location of the tumor prevents all of these from being options, but you would want to know why only one is offered if that is the case. Many general urologists have only been trained to do an ileal condiut. If that is what is suggested for you, you want to be sure that it is because it is medically indicated and not just because that is the only one the surgeon knows how to do.
One type is not necessarily any better than any other....it depends on the patient and his condition and his wishes.

How do you determine how many a urologist does and what options he is qualified to perform? YOU ASK. Sometimes patients are sort of in awe of a doctor....don't be. You are paying for a service and, just like anything else you buy, it is up to you to find the very best place to spend your money!

If at all possible it is better to be treated at a large institution such as an NCI-designated cancer center or a university/medical school center. These places are much more likely to be up on the most current medical practices.

Then, the final and most important criterion is that you feel comfortable with the doctor and the situation.

Hope this helps a bit....and wishing you the very best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: aseldin

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1 year 11 months ago #52500 by aseldin
I have been diagnosed with stage 2 musssel invasive high grade bladder cancer in October of this year.
I have visited three Urologists. All three have recommended chemo and then surgery. Can I send you the three doctors that I am considering and get your opinion. thank you.

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2 years 19 hours ago #52491 by sara.anne
I have no personal experience with Dr. Lee. From his information on the Univ. of Kansas Medical School web site, he seems qualified to treat bladder cancer.

Sara Anne

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

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