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newly diagnosed; where do I go from here?

8 years 10 months ago #34725 by jj803
Forgot to mention that I was at least pT1 on diagnosis, but there was a strong possibility, based on the histopathology of the initial turbt, that I had muscle invasion. I ended up with 2nd opinions from Vanderbilt Medical Center in Nashville, Tn and MD Anderson in Houston as well as pathology opinions from both of those as well as Johns Hopkins to try to clarify the muscle invasion picture. none agreed on that, so even though treatment recommendations from both MDA and VU were a trial of BCG, I chose to be more aggressive based on the high possibility of muscle invasion and had radical cystoprostatectomy with extended lymph node dissection and neobladder diversion. After the surgery, it was determined that I had pT2a (muscle invasive) bc with no nodal involvement or extension beyond the bladder and no tumor at margins in addition to a Gleason 6/10 multifocal, but small, prostate cancer (previously unsuspected). My post op course was textbook, home on day 6, foley out 3 weeks after discharge and immediate incontinence. Over the next several months I became continent day and night. Returned to work on a very limited basis and a non physically demanding job at weeks post op which was probably too soon for me. Tired easily and needed naps for a few weeks after going back. That was about 2.5 years ago and now I am very physically active for a 61 year old. Ride my bike most days totaling about 100-150 miles/week, lift weights, travel (including trip to Europe this summer) and pretty much do anything I want. I do plan some like fully emptying the neobladder before driving for any long distance, before bike rides and before strenuous physical activity. So the bottom line is that a high quality of life is available after cystectomy. By the way I had no complications post op and have had none since. At last check (June of this year) all tests are ok for bc and prostate ca recurrence so for now in the clear. Best wishes,

jj

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8 years 10 months ago #34720 by mmc
Joe,

Forgot to mention that other than the couple items I mentioned earlier in the thread, I can do anything I could before. Golf is better because I don't have to pee so often anymore. Got back to scuba diving last year and that was a blast. Have my season pass to Winter Park so I'm just waiting for opening day to hit the slopes.

The moral of the story is: Even with some complications, life is great and you can do anything you could before (sometimes better).

:)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 10 months ago #34717 by upnorth1414
HI JJ,

Thanks from replying to my post so quickly.

And thanks for the info your provided. Yes I will be visiting a second urolgist for an opinion and am exploring the option of visiting with one more oncologist for another opinion.

Just curious...what route did yout end up taking after your diagnosis and how are you today.

Thanks,

Joe

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8 years 10 months ago #34716 by upnorth1414
HI Jim,

Nice to meet you, and thanks for replying to my post. I have read some of your other posts on here and Imust say your are very encouraging especially for a guy like me just beginning to go through this...thanks!

As things progress I sure hope you don't mind my calling on your for many questions.

Thanks,

Joe

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8 years 10 months ago #34676 by jj803
Hi Joe,

I had a similar diagnosis 2-3 years ago. I think most agree that RC with extended lymphadenectomy is the "gold standard" for muscle invasive bc. The role of perioperative chemotherapy is not as uniformly recommended although some would recommend neoadjuvant therapy (chemotherapy before the surgery) for muscle invasive disease. The theoretical advantage is that if there are "micro-metastatses" (too small to be detected by available means), that they might be successfully treated with the chemo. Data suggest that for all comers (T2 and higher stages) there is about a 5-10% 5 year survival advantage for this treatment. Other urologic oncologists prefer to do the cystectomy in pT2 patients to assess the "true" need for chemo rather than submitting all to this. Most muscle invasive tumors are also high grade, so grade plays little role in determining treatment options for higher stage disease (pT2 and above). Lymphovascular invasion can be difficult to determine in bladder specimens, but when there confers a bit worse prognosis and might be an argument to strongly consider neoadjuvant therapy. You will probably also be getting a second opinion on the pathology with your consult and it will be beneficial to know if they are in agreement with the initial pathology. Best wishes,

jj

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8 years 10 months ago #34669 by Humpy
Joe, I can play 18 holes of golf w/o a problem, and have returned to the ice (hockey), but just need to be careful.
I currently walk 3 - 5 miles a day, so hiking, and canoeing will not be a problem.

I was in the hospital 6 days, and on sick leave 2 1/2 months. I could have went back to work sooner, but I milked it a bit. The first month pos op sucks. Then things really start to improve. You will not be sorry to do this, considering the alternative! I am 17 months post op.

We make it to TC for the film festival, and golf weekends. We have a summer place on Tawas Bay, and call Clarkston home.

Jim

Go Blue! (Sorry George)

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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