Stage 4 SRCC of the bladder

2 years 5 months ago #56372 by embry1123
Stage 4 SRCC of the bladder was created by embry1123
So, yesterday I was told that I have Primary signet ring cell adenocarcinoma of the bladder. I don't see the Oncologist until Monday afternoon. After quite a lot of research, this doesn't look too promising and is of course not what we were hoping for. There doesn't seem to be an awful lot of information available on this type of bladder cancer. Can anyone shed any light on it for me?
Thank you.

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2 years 5 months ago #56374 by sara.anne
Replied by sara.anne on topic Stage 4 SRCC of the bladder
This is, as you have discovered, not a common bladder cancer. You would do well to be seen at a place that specializes in out-of-the-ordinary cases. I would truly recommend that you contact Dr. Agrawal at the National Cancer Institute. He would be able to give you suggestions on where you might need to go

Piyush K. Agarwal, M.D.
Center for Cancer Research
National Cancer Institute
Building 10 - Hatfield CRC, Room 2-5952
Bethesda, MD 20892-1210
Ph: 301-496-6353
This email address is being protected from spambots. You need JavaScript enabled to view it.

Dr. Agarwal is very easy to talk with and would be glad to help if he can.

Sara Anne

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

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2 years 5 months ago #56405 by embry1123
Replied by embry1123 on topic Stage 4 SRCC of the bladder
Thank you, Sarah Anne, for the advice. The oncologist that I will be seeing, is Dr. Jue Wang. He has written a brief paper on this type of cancer, so I’ll see what he has to say. We were expecting, per the surgeon, for the pathology to determine the stage and grade of the tumor. Neither was given in the report, although I assume that the type of cancer it is, kind of gives the grade. I’ll post back after seeing Dr. Wang tomorrow afternoon.
Thanks again.

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2 years 1 month ago #57225 by embry1123
Replied by embry1123 on topic Stage 4 SRCC of the bladder
Good morning, All.
As an update to my post from December...
In January of this year, I was told that my cancer is stage 4. Chemo is now as a palliative measure and not of curative intent. Without chemo, they are saying I would have ~6 months to live. With chemo, 18 months, on the outside.
I have actually come to peace with this, however my family, wife and parents, have not. They keep telling me to be positive and things will get better. I'm not negative about it, but I am being what I believe is practical. I have since gotten my will and other legal instruments in order. How have any of you dealt with family members who are not willing to accept the prognosis? It's kind of tough on me as they don't want to discuss the future and what time I have left. I wanted to take a life long dream vacation to Europe, but my wife is concerned that we will be spending money that could affect her ability to survive financially IF I do die... I haven't pushed the idea any further, but at the same time, it is the ONE thing that is on my "bucket list"... Am I being selfish in wanting to do this?

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2 years 1 month ago #57227 by Cynthia
Replied by Cynthia on topic Stage 4 SRCC of the bladder
No Embry I don’t feel you are being selfish. It is hard for family members often times to except reality it is very human to wish things away. I am one of the lucky ones but I remember wanting to have hard discussions after my diagnosis it was as if we really talked about it it would burst their bubble of hope. So I got my affairs in order just in case and went on with my treatment but I did find a good therapist I could talk to without having to pull my punches because I need that. She helped me to see that everyone handles this sort of thing in their own way and my children’s way was to hope everything would turn out OK, they needed that form of comfort. My husband was more pragmatic than my children so I was also able to talk to him.
I used to think that getting cancer was the most selfish thing I ever did, I worried about the toll it was taking on my family emotionally and financially. We had insurance but the copay’s and travel were hard and he wanted to take me on a vacation after chemo and before surgery. I remember a conversation I had with my husband about did we take a second mortgage or do a early withdrawal from retirement, I was worried about the ramifications for the future. Those days in the Florida Keys snorkeling for the first time will always be one of my most cherished memories. I was able to forget about cancer and diversions and all the what ifs for a little while and just be normal. I don’t know what your financial situation is but finding out what the cost is and taking a look at what your financial situation is might help your wife feel more comfortable with going. I think I would say to your wife that of all the things you can own the only thing no one can take away from you is your memories. When I think of those days I know it has formed who I am today. I am more likely now to make sure life is about more than work and the day to day and try to not put things off and think some day. It is a gift I wish we could give to everyone in the world, call that loved one, follow that hot air balloon, eat that chocolate bar,enjoy that sunset and check off the items on your list. This may not help at all but no Embry I don’t think you are being selfish. We are here is you need to talk.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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