Just received call on my pathology Thursday 6/29/17.
Diagnosis : Deep Muscular Nested Variant Urotheliel Carcinoma. Have not received path report, but requested it, so don't have any particulars.
Recommendation: Radical Cystectomy following CT Scan with contrast to search for Metastasis. Onconoligst recommended not waiting.
Work is being done at Stanford Med Center, cancer center in San Jose and Palo Alto CA
Ok, so after punching a hole on the wall, I told my Doc I wanted a second opinion from Dr Elia Skinner, the head of the department, and one of the most accomplished scientists and surgeons in the field of bladder cancer. He agreed to get me an appointment for consult, but that is not until July 18, and her surgery calendar is booked into late august. I am afraid to wait.
I am now 48 hours into this diagnosis. I have read every case study I can find on this rare aggressive cancer. With a diagnosis rate of 0.8% of all bladder cancer recorded, I am on able to find much information , and none with any encouraging statistics or remarks. Because of the rarity, it gets little to no study. All reports and case studies overlap, and conclude with poor prognosis. From my research, mortality in the first year, following RC, is still 70%, and 2 year survival is rare. I feel this is a sure death sentence.
I have now informed all my family , of which I have a lot, with 7 ciblings, a wonderful amazing wife of 22 years today, and with exception of two adult daughters. One daughter is in Costa Rica do a Spanish immersion with the College she work for as a librarian, and a daughter that is in her 2nd year of drug recovery and working as a drug counseled. I feel I should wait a Ct diagnosis before jarring either of them. That said I've been overwhelmed with love and support, and feel blessed for that.
Now that I've read myself into a place where I realize there is no clear treatment plans for these cases, and the documented outcomes are almost all bad, with survival expectancies in the "months" range, I feel My life is essentially over at 54. I feel powerless. And it's ironic, aside from cancer I am probably near the most fit I have ever been in my life? I work physical labor daily with a real estate business, and cycle 75-100 miles per week. I even feel suicidal, though I would never act on it because I've lived through that with friends, and feel it's a chicken shit way out that just hurts others.
So here I am....powerless over another disease. ( I am a recovered alcoholic-15 years) this time however, I am afraid of the future that cancer gave my friend , and cousin. Simply put, they were both treated with radical surgeries and crazy amounts of chemo for stage 3 and 4 cancers. Both essentially died from the treatments within months. The first from the chemo, the second from a heart attack in the bathroom immediately following treatment. Both were approximately my age at the time.
Tonight my wife an I went to a nice dinner for our 22nd anniversary. Neither if us ate much, and hardly spoke....just stared across the room from utter exhaustion. Apon returning home, I began crying nonstop again. My biggest fear is to leave her alone upon my death. My second biggest fear is to have this radical surgery, have complications, or/and find that that the cancer has metastasized anyway (50% of these cases), and then put my wife and family through a slow agonizing painful death.
Part of me wants to just accept my probable fate, and skip the surgery,suffering, and destruction of the people I love. And take the assisted suicide when the time comes, But I really don't want to die! I love life. I love working I love helping others, and I'm just not done yet! I am at a total loss of what choice I should make, I would like to hear what it's like being an RC patient, what my options are, and any other input of hope anyone can share. Thanks to all who dedicate their time here, you do make a difference. Best regards
Charles