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Nested Variant Urotheliel Carcinoma diagnosis

1 year 5 months ago #53685 by NotDoneHereYet
Thank you both for for your encouragement, and Jack, you are correct. You told me something I shared as advice for others for years; those in action have no time to worry. My wife and I both needed the input Sara and yourself have given. Thank you both. It's like being hit by a mental train; all rational thought scattered.
I am going to get some exercise this am, and return and contact both docs with these questions, coupled with this request for treatment now, and surgery asap. ( from what I've read already, RC is first step.)I forgot to mention I already have the Ct scheduled for tomorrow.
Best regards to you both
Charles and Lorna

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1 year 5 months ago #53684 by sara.anne
Charles, I am so sorry to hear about your diagnosis. But the good news is that you are at one of the very best sites in the country for diagnosis and treatment of rare or unusual bladder cancers. Jack's advice is excellent (as usual) and I heartily concur. You can be sure that Dr. Skinner is already aware of your case.....something like this is shared throughout the department and discussed at case meetings. You no doubt have the collective wisdom of the entire department on your side. This is a teaching hospital and cases such as yours are valued for their teaching potential. Keep your appointment for a consult with her, but go ahead with the treatment plan.

Please remember that statistics are just that, and that the information you may find on the internet is months out of date. You are NOT a statistic and this is a battle worth fighting. You will know if the time comes that it might be lost. The fact that you are in excellent physical condition is a big plus on your side. Now you have to get your MIND into
fight mode.

Our minds and hearts are with you!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 5 months ago #53683 by Jack R
Charles,

None of us want a pathology report such as that. BUT, it is just a pathology report.

You know no more that what was reported. An aggressive cancer is invasive. You do NOT have a report saying that the cancer has spread. You need more information, and you want it soon.

I offer some thoughts to consider in consultation with your doctor.

It is THE time to move things ahead rather than worry about what is next. There appear to be actions that you might be able take immediately, with the help of your current doctor. Schedule that CT scan ASAP so that it will be ready soonest, ask about starting pre-surgery chemo immediately, while waiting for a consult. Use the time waiting for a second opinion to your advantage. Ask for a second reading of the biopsy material by an outside lab. Ask if ANY diagnosis this invasive would result in a recommendation for an RC ? Ask, if you should focus on the words "Aggressive and Invasive" only - it may help clarify the options and actions needed as well as time frames. Move ahead what you can move ahead.

18 days must seem like an eternity.But it may be too short a time for the cancer status to change. All cancer has to start somewhere at some specific time. You may have caught this early. The recommended RC may resolve the cancer, with undoubtedly, much follow up.

The bottom line is, get things moving. Fight for the best possible outcome. Again, nothing in the pathology report says that the cancer has spread. Hold on to that.

I understand your concern and thoughts of wife and family. Part of my planning ahead has been to assure the best outcome for my loved ones if my BC can't be controlled. It is what we do for our loved ones. We care for and try to protect them. We can best do this by doing everything we can to remain HERE for them.

I hope this helps, and typed cold, I hope I have not made some blunder typeo. Give it your best shot.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 5 months ago #53682 by NotDoneHereYet
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

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