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Ben\'s Chapter One - Partial Cystectomy

7 years 9 months ago #42866 by upnorth
Ben,

I love your positive attitude. I pray that it has all been removed and that you will not have to go any further with your treatment.

Please do keep us posted, so if others have to face this situation they will have your story to help them.

Hang in there. Your going to do okay.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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7 years 9 months ago #42863 by MyChoice
Mike,

I'm glad you chimed in because when I first heard the "wait and see" I was like OH HELL NO. Second opinion!!!!! Take it all out now and let's start chemo again double dose!

The URO surgeon said at first glance of cancer returning to the bladder he will take it all out. If I was 70 years old he would have done that already but since I am younger he said it's worth the risk of 2 operations since I get to keep all my parts until it reoccurs but maybe it won't. Some British articles say Americans are too quick to just do a ratical and not consider partials at times. I tend to believe that but that's my opinion.

Oncologist is keeping the CT/PET as an option. He said we will do one when needed. Siteman cancer center has some serious CT scanners and he says we can do CT's until it appears we need more refined pictures.

Thanks brother and good uck to you too. I will keep you posted.

Ben

PC 7/2/12
T3a/N2/M0

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7 years 9 months ago #42861 by mmc
Ben,

Not confused at all. It all makes sense to me. Seems to me like overall it sucks!
I really hope it all works out.

One thought is that because it was T3, then the rest of the bladder is HIGHLY likely to have a recurrence. If they got the only two lymph nodes that had cancer spread then wouldn't removing the source improve the odds?

If you haven't asked them about the CT/PET (the PET part being the operative word) then you may want to discuss it. They do head to toe and put radioactive stuff in the veins. If you do it and you get the CD of the scan don't freak out when your kidneys, brain, and bladder light up like New Your City at night. It doesn't mean anything. Freaked me out but that's what I get for looking at scans without waiting for the doctor to do the report.

Sounds like you are in good hands so that is good. It's just my spidey sense getting tingly about "wait and see"....

Good luck with everything!

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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7 years 9 months ago #42859 by MyChoice
Mike,

Mine situation is a little different but at the same time very similar to yours. In a nutshell I had a T3 TCC high grade invasive tumor BUT it was located on the dome in the front of the bladder. Since it did not interfer with any organs directly or other bladder tubes etc they offered a partial cystectomy. I go to Barnes Jewish Hospital Siteman Cancer Center in St. Louis which is one of the top 6. Actually my surgeon and Oncologist both do second opinions for MD Anderson that have patients wanting a second opinion. The surgeon says my situation is rare, he only does about 5 of these type partials a year (primarily because where it WAS located). The bottomline now is since the nodes were positive we either treat with more chemo nor or wait and see. My oncologist is top ranked and he says - we only have som many bullets in the gun that we can use so why shot now when we do not know where the cancer is or if there is cancer spreading. Surgeon says he thinks since so many bladder/prostrate etc biopsies were negative he thinks I have as good if not better chance than if I had done a NEO. He does 45+ NEO's a year. So I don't know. I started to get a second opinion but if MD Anderson would have said do more chemo now I doubt I would. I went thru 3 months of it so I do not want to reach my lifetime limit and then need it down the road for something else. So I'm still pondering all that. My surgeon says my oncologist is weird but he is the smartest oncologist he knows and he would trust him with his life.

I get a new CT on the 21 of this month, it will be my baseline CT going forward.

If I have confused you with any of this let me know.

Thanks

PC 7/2/12
T3a/N2/M0

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7 years 9 months ago #42858 by mmc
Ben,

Is this guy a top bladder cancer specialist?

I don't have a lot of knowledge about the kind of bladder cancer you had when they took my bladder out, they took something like 14 lymph nodes along with it.

In my case they were all clear so it has just been monitoring.

I guess that since they know that 2 of the 19 have bladder cancer it is enough to plan the treatment. Jim had lymph node spread and went through chem and he's doing fine. "Jimswife" posts here and hopefully she will see your message and chime in.


I have no clue why they would be thinking "wait and see" is an appropriate response. Chemo after the surgery is a normal course of treatment.

Please consider getting to Memorial Sloan Kettering or MD Anderson or something to get a 2nd opinion. The current plan being proposed to you doesn't make a lot of sense to me. Did they do a CT/PET scan? Seems like at LEAST that is in order right now just be sure there is no distant mets. THEN, it seems like follow up chemo and/or removing the rest of the bladder would be in order.

Something just doesn't seem right and it seems like another opinion is very much in order in your case.

I hadn't replied to your earlier posts because it is just a different kind of thing that you had/have and I didn't have anything to add. Now, however it just seems imperative to get to someone else to review your case.

I'm not a giver upper and I can tell from your posts that are not a giver upper. It sounds like your oncologist might be so maybe finding someone else will offer a chance for a better outcome.

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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7 years 9 months ago #42849 by MyChoice
Sorry for going quiet for a while folks. I just had too many things going on.

I finished 3 cycles of chemo on 5/29. One 6/14 I had a cysto with biopsies in several places and they all came back negative so the surgery (partial) was a go. On 6/16 I had a CT with contrast and all that looked good, the tumor was much smaller. The surgeon said he thought he could just remove about 1/4th of the bladder instead of 1/3rd.

On 7/2 I went in for the partial cystectomy and removal of the pelvic lymph nodes, I forget what the medical term for that procedure is. I was in surgery for a couple hours and then to recovery for a couple more. The next day the surgeon said it went very well, several biposies were taken during surgery to determine how much of a margin was needed (how much distance betweeen the tumor and good tissue). I left the hospital on the 4th of July and was I was happy!!

A week later the surgeon called to say all of the bladder biopsies came back negative HOWEVER........COUGH/GAG............ 2 of 19 lyph nodes were positive. So I am now stage 4 metastic cancer but no distant metastasis as of yet. So the oncologist wants to do a "wait and see" approach. If the cancer spreads then we will deal with it wherever it turns up. However, if it does show up it will most likely be incurable. There is a possiblity that the two positive lymph nodes that were removed might have taken care of the problem. The oncologist pretty much said to just get my head around the possibility of what could happen but get on with living.

So for now the plan is to have a CT scan every 6 months besides the every 3 month cysto. Anyway that is the latest. Have a great week and I will keep the updates coming. I think my next post will be Ben's Chapter Two!!!

PC 7/2/12
T3a/N2/M0

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