\"High grade\" diagnosis

9 years 11 months ago #37815 by johnanddenise
\"High grade\" diagnosis was created by johnanddenise
Just got the pathology news for my husband. Most entries say "high grade papillary urothelial carcinoma with exophytic and endophytic growth pattern, without definite invasion; muscularis propria is identified (uninvolved by tumor." (FYI, these tumors only developed in the last 6 months). One entry says "high grade papillary urothelial carcinoma in situ. We are seeing a urological oncologist soon. Urologist, however, is talking bladder removal. Thoughts, anyone? Any experience post-bladder removal? Any recommendations re a urologist or a hospital in the greater Connecticut area? Thank you so much. - Denise

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9 years 11 months ago - 9 years 11 months ago #37823 by CatherineH
Replied by CatherineH on topic \"High grade\" diagnosis
Hello Denise and John... Welcome to the site and I am so sorry about your husband's diagnosis. The first few days after hearing that you have bladder cancer of any kind feels like a hard punch in the stomach and leaves you stunned. It sounds like your husband's was caught in the early stages from what you have said which is a positive. Bladder cancer is very treatable, and the earlier treatment gets started, all the better for the patient.

I think most first discussions with a urologist about bladder cancer include the possibility of a cystectomy (bladder removal). In some cases, it may be the best option to rid the body of a high grade cancer. My tumor did not require bladder removal, so I can't address questions you have about that.

However, there are many people here who have been through that process with great success. They will respond to your post as they find it and will share their experiences with you. In the meantime, if you haven't already, you can browse the various sections of the forum and find situations similar to yours. Check the "Men and Bladder Cancer" section.

You will find a group of wonderful people here who have been where the two of you are right now who will help make this not so scary. No question is out of bounds here since most of us lost any shyness about our bladders long ago!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 11 months ago #37825 by Patricia
Replied by Patricia on topic \"High grade\" diagnosis
Hi Denise,
Yale is the only NCI designated center in Conn and i wonder how much bladder cancer they see? Here's one recommendation to at least ask

Personally i would get myself to Memorial Sloan in NYC where they have about 8 specialists in bladder cancer who do an average of 80 cystectomys a year if that is indeed recommended. This would be a very good place for a second opinion.
Drs. Herr, Bochner...two of the best. Just hit their name and their bio will come up..

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9 years 11 months ago #37828 by mmc
Replied by mmc on topic \"High grade\" diagnosis

As Pat said, MSK is the place to go. This is not a cancer you can mess around with so getting to the best is important.

Many, many of us here have had our bladders out. It's scary before you get it done. Afterwards, not so much. :)

I have a neobladder (new bladder made from a segment of my intestine) and have been cancer free for a little over two and half years now. There are alternatives for diversions (e.g. Indiana Pouch and Ileal Conduit). There are many others who had their bladders out much longer.

Some post here at this site and others have just put the whole bladder cancer thing behind them and they are doing just fine as well.

While very scary, it is not the end of the world and there isn't anything he can't do without a bladder than he can do now. My quality of life has actually improved because I had prostate problems before that kept me from sleeping and kept me running to the bathroom way too often. Not a problem now.

Best of luck!

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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9 years 11 months ago #37830 by dukel
Replied by dukel on topic \"High grade\" diagnosis
JohnandDenise, Sorry you have a need for this site but glad you found it. I know that right now the cancer is all consuming to the both of you. If you post, read and search this site enough you will find not only comfort here, but also a road map for the journey you are both undertaking. As for post-bladder removal, yes I like many on this site have been there. I'm 64yrs old, about 18 months post neo. The surgery is tough, with a few months of uncomfortable recovery. That said, my life is completely back to normal. So the surgery is doable, but you're not there yet. You need to get all the info you can on the diagnosis, and get a second opinion. Whatever direction you choose to go there will be people on this site that have already been there and can help you.
Wishing you both the best.

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9 years 11 months ago #37837 by Herb
Replied by Herb on topic \"High grade\" diagnosis
Hi Denise and John: 72 year old retired priest --- after going through all the 'magic bullet' treatments on 9/11/10 I said goodbye to my cancerous bladder and prostate --- people on here helped me get through it and still help now and then --- I got mad at my Boss Upstairs --- when all was said and done the strength to continue to continue was given. Hang on and you are not alone! Herb†

Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50's.

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