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diagnosis from Mass General, need help

5 years 1 month ago #49219 by Cynthia
Helen, Sorry your family needs to be here. Did you know that the birthplace and headquarters for the American Bladder Cancer Society is in Dalton Ma. I am a ten year survivor of invasive bladder cancer who had a great deal of my treatment at MA General. I stil see my Onocologist Dr Lee and his nurse practitioner Erika there, they specialize in bladder cancer and I would highly recommend them
Your brother in law is young and he will need to talk to the surgeon about nerve sparing to preserve sexual function what type of diversion he might be able to have. There are basically three different types of diversions not all hospitals offer them and not all patients can have a choice. It can depend on tumor placement and surgeons expertess.
I was 48 when I started this journey and there are many more of us that are now living full lives. I am sure our resident race car driver will chime in soon.
I know you are reeling and have a million questions and we are here. Ask us questions and we will help you with the questions to ask your health care professionals. You will get a handle on this but it takes time.

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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5 years 1 month ago #49218 by sara.anne
So sorry to hear your story, but very glad that your brother-in-law went to Mass General for a second opinion. If there was to be bad news, better to get it right away than to let this get out of control. Bladder cancer is nothing to fool around with.

Should the diagnosis hold, and bladder removal become a reality, it is important for him and for his family to remember that this is really curative and is not the end of the world. We have members here who are living full lives without bladders, driving race cars, scuba diving.....

If he is going to have bladder removal and reconstruction, there are some important things for him to consider (and this is a difficult time for "thinking" I know). There are three types of bladder reconstruction available that he should discuss with his urologist/surgeon, with pros and cons to each. Here is a good summary of the possibilities

The Founder and President of the American Bladder Cancer Society, Cynthia, also lives in Western Mass and finally had her treatment at Mass General and at the Univ. of Chicago. I am sure that you will be hearing from her.

Best of luck to you all.

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

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5 years 1 month ago #49216 by Helen
My dear brother in law went to Dana Farber and Mass General today to get second (and third) opinions following a diagnosis of bladder cancer by a urologist in Western Mass. He was told today that his cancer is much more serious than the diagnosis he had received following the initial surgery. He has high grade papillary urothelial carcinoma, tumor extensively invades lamina propria, anaplastic microcapillary and signet ring features (those words may be all out of order, it is what I wrote down).

His urologist in Western Mass had removed the tumor about two weeks ago. At that time it was diagnosed as stage 1 (maybe borderline) high grade, he was told he only had a 20% change of recurrence. But the pathologist at Dana Farber has read it as much more serious. Mass General pathology has not reviewed the tissue.

Both Dana Farber and Mass General docs recommended removal of the bladder, which could be followed by reconstruction. Mass General team said they could schedule the surgery in about 5 weeks time.

My brother in law is exhausted and reeling from the news and asked me to post here. Are there people who could help advise on any of this? On Mass General, Dana Farber? On next steps following this diagnosis? My brother in law is aged 54, excellent health, very active. Thank you so very much. Helen

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