Signet Ring Cell Carcinoma (bladder) - NEED ADVICE!

My mother was recently diagnosed with Signet Ring Cell Carcinoma of the Bladder stage 3.  This cancer came on hard and fast, giving us little time to research let alone digest the news.  She underwent surgery to have her entire bladder removed last week, at which time we found that the tumor spread outside the walls of her bladder and it was necessary to remove her retum and part of her colon.  I was told the cancer is rare and the prognosis is not good... well guess what that doesn't work for me.  There are not any Oncologist's in town that have treated this type of cancer and I am not going to chance my mother's survival with a Doctor who has read some journals and clinical trials... 

I have so many questions but I guess the two I need answered...

Does anyone know of a reputable Doctor and treatment center that specializes or has treated signet ring cell carcinoma? I want to take her somewhere for a second opinion...

Is there anyone else out there who is fighting or knows someone who is fighting this type of cancer?

I need some kind of reassurance that we are not alone... after hours of nightly internet research, I have come up with little... looking for some hope & guidance ... my mother is not a statistic and damn her Dr for putting a number on her head!

Hi

Was the carcinoma purely signet ring cell - or was it mixed with other types of cancer cells?

The reason for my question is that I have a rare form of bladder cancer - urachal adenocarcinoma - when pathology came back it was mixed with signet ring cells - I was told that the signet ring cells are more typical of stomach cancer.

I totally agree with you we are not statistics - not sure where you are based but the Chrisitie Hospital Manchester is one the the centres of excellence in treating all kinds of cancers - maybe they would be able to assist your Mother. If you live in the USA maybe the MD Anderson Cancer Centre in Texas will have the information you seek - they too deal with all kinds of bladder cancer.

My own story is not good so I won't share my experience - your Mum is fortunate to have a daughter that cares and is willing to do the research to find a way forward - and the gold standard of care in most types of bladder cancer is to seek an operational cure.

Another webiste you may wish to check  out to broaden your search for someone with exact experience is

http://www.inspire.com/groups/bladder-cancer-advocacy-networ

hope some of this helps - sending e-hugs of emapthy

dixie

On Jun 05, 2012 9:50 PM mama2410 wrote:

My mother was recently diagnosed with Signet Ring Cell Carcinoma of the Bladder stage 3.  This cancer came on hard and fast, giving us little time to research let alone digest the news.  She underwent surgery to have her entire bladder removed last week, at which time we found that the tumor spread outside the walls of her bladder and it was necessary to remove her retum and part of her colon.  I was told the cancer is rare and the prognosis is not good... well guess what that doesn't work for me.  There are not any Oncologist's in town that have treated this type of cancer and I am not going to chance my mother's survival with a Doctor who has read some journals and clinical trials... 

I have so many questions but I guess the two I need answered...

Does anyone know of a reputable Doctor and treatment center that specializes or has treated signet ring cell carcinoma? I want to take her somewhere for a second opinion...

Is there anyone else out there who is fighting or knows someone who is fighting this type of cancer?

I need some kind of reassurance that we are not alone... after hours of nightly internet research, I have come up with little... looking for some hope & guidance ... my mother is not a statistic and damn her Dr for putting a number on her head!

Where do you live?  You want to get a surgical opinion from the surgeons that perform cytoreduction sugery plus HIPEC (heated chemotherapy).  MD Anderson in Houston (Contact Dr Paul Mansfield) has the most experience with this procedure, so you may want to start there,

Bill

Thank you Bill for your recommendation!  I did call MD Anderson yesterday and unfortunately did not have much luck with the support line.  I want to find a Doctor that has treated this type of cancer and the woman I spoke with on the phone pretty much said she was as far as I was going to get without scheduling an appointment and heading down to Texas.  

I am in Lincoln, Nebraska.  My mother was just released from the hosipital and is recovering from her radial cystectomy.  Once she has recovered we are looking into Cleaveland Clinic, Mayo and originally MD Anderson... Do you think MD Anderson is the best option?

On Jun 07, 2012 6:29 PM mama2410 wrote:

Thank you Bill for your recommendation!  I did call MD Anderson yesterday and unfortunately did not have much luck with the support line.  I want to find a Doctor that has treated this type of cancer and the woman I spoke with on the phone pretty much said she was as far as I was going to get without scheduling an appointment and heading down to Texas.  

I am in Lincoln, Nebraska.  My mother was just released from the hosipital and is recovering from her radial cystectomy.  Once she has recovered we are looking into Cleaveland Clinic, Mayo and originally MD Anderson... Do you think MD Anderson is the best option?

I think that MD Anderson is the best.  And yes, you have to go down there and make an appointment - may have to spend 2 days.  You'll get to the appropriate people.  

Cleveland Clinic has competent staff and does the surgery.  Before you consider

Mayo, make sure that do the surgery - they may not. 

Location and distance from home are important factors, so Cleveland Clinic may be best bet for you.  I hope that you find what you are looking for.

I think I am a little confused... what type of surgery are you referring to?

On Jun 07, 2012 7:32 PM mama2410 wrote:

I think I am a little confused... what type of surgery are you referring to?

When Ring Cignet Cell carcinoma gets into the abdominal cavity, some patients are candidates for a specific surgey.  It is called Cytoreduction Surgery (CRS) or "debulking".  They remove all of the tumor that they can get plus the mucin that is secreted by the tumor.  Then, they put in heated chemotherapy (called HIPIC) for 90 mintes and shake it around hoping to kill all remaining tumor.  This procedure carries some controversey, is reimbursed by Medicare (usually - check that out too) and is appearing in more and more medical centers.  Check out this website http://www.pmpcure.org/content/professional-advisory-board&n

On Jun 07, 2012 7:44 PM glazmedsol wrote:

On Jun 07, 2012 7:32 PM mama2410 wrote:

I think I am a little confused... what type of surgery are you referring to?

When Ring Cignet Cell carcinoma gets into the abdominal cavity, some patients are candidates for a specific surgey.  It is called Cytoreduction Surgery (CRS) or "debulking".  They remove all of the tumor that they can get plus the mucin that is secreted by the tumor.  Then, they put in heated chemotherapy (called HIPIC) for 90 mintes and shake it around hoping to kill all remaining tumor.  This procedure carries some controversey, is reimbursed by Medicare (usually - check that out too) and is appearing in more and more medical centers.  Check out this website http://www.pmpcure.org/content/professional-advisory-board&n bsp;"" target="_blank" rel="nofollow">http://www.pmpcure.org/content/professional-advisory-board&n target="_blank" rel="nofollow">http://www.pmpcure.org/content/professional-advisory-board&n

Also, for a clear discussion of this surgery in the NY Times, go to http://www.nytimes.com/2011/08/12/business/heated-chemothera