Newly Diagnosed Stage 4 Bladder Cancer Questions

7 years 10 months ago #50538 by jay_rogers
Replied by jay_rogers on topic Newly Diagnosed Stage 4 Bladder Cancer Questions
Sorry to hear about your dad. I agree with alan. You should go with the second opinion. Be with your dad. Be positive. Keep us updated.

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7 years 10 months ago #50537 by Alan

Welcome. We are sorry to read about Dad's diagnosis. As a part of your "Dad's team" pat yourself on the back. It is helpful to have family and friends that want fight along as a caregiver.

None of us are doctors and I have not been in you Dad's situation but, some with a little more insight will see this and chime in. I would certainly look into a second opinion, especially from a teaching hospital or one that sees a lot of BC as so many deal with mostly prostate. MD Anderson, Cleveland Clinic, Sloan Kettering, John Hopkins etc. What area of the country do you live as someone may have a suggestion? Especially in the denials of other scans. I do know on invasive BC most doctors want to finish the chemo before entertaining a cystectomy.

Others should see this with more ideas.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 years 10 months ago #50535 by christa811
Replied by christa811 on topic Newly Diagnosed Stage 4 Bladder Cancer Questions
Sorry for this long post everyone! Didn't realize it was so long! Guess I had a lot to get off my chest ;) Thanks for taking the time to read it.
The following user(s) said Thank You: rkp

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7 years 10 months ago #50534 by christa811
I’m writing this post about my father who is 63, about to turn 64 in April. In mid October, 2015 he was admitted to the ICU for sub massive pulmonary embolisms. This was just two to three weeks before my wedding in Cancun, Mexico. He was urinating blood in the hospital which lead to the ordering of a CT urogram scan. This scan showed growths on the prostate, bladder wall thickening and right iliac lymph node. We were told CT scans can be poor indicators and visuals of bladder tumors, so dad had a lymph node biopsy in the hospital which resulted in bladder cancer. We pushed for a PET scan and we were denied at this time. Once we were sent home, dad had a scope in the office to confirm a bladder tumor in the dome of the bladder, towards the right side.

We were told in the hospital, this is stage 4 and there is not a cure. But we are prepared for a fight. Dad went to my wedding and started chemo right after our return. It was a fabulous trip and exactly what we all needed. Our oncologist pushed for a PET scan before treatment and we were denied once again. Our Dr asked for a CT scan of the lungs, this was denied as well. We saw a second oncologist at Mayo that agreed with the plan, also said my dad had about 2 years to live. Dad started Cisplatin/Gemzar (GC) chemo in November and finished cycle 3. He had a repeat CT scan on Jan 20th that shows significant decreased lymph node and bladder wall thickening. Abdomen is clear and no other lymph nodes are involved at this time. Our urologist is refusing to do another scope for another 2 months (we are seeking other opinions). We know the chemo is working, so Dad started cycle 4 this past week.

I have a few questions for the blog readers. I’ve read a few of your stories and I truly admire all of you for sharing your experiences. If anyone has an input on our story and plan of care, we would love to hear it. Knowledge is power and we would love to hear everything you have!!

Two oncologists have said that they would not recommend a RC until his scans are clear for 2-3 months once finished with all chemo, any thoughts on this? The reasoning provided, people undergo RC with stage 4 BC and the cancer is back within months of bladder removal.

Why are PET scans denied, even with lymph node involvement? Anyone able to get a PET approved in stage 4 BC? This would be a huge decisive factor for my father in undergoing a RC.

Has anyone been treated with more than 4 cycles of C/G? I was researching about the side effects and this will likely beat him up in the future. Right now his only symptoms are mild to moderate ringing in ears, mild peripheral neuropathy and fatigue.

Dads only symptom with the bladder cancer is urinary frequency (his blood in urine has now resolved, once leaving the hospital 10 days later) which started early in 2015 and which masked the bladder cancer by a diagnosis for BPH then low grade, non aggressive prostate cancer with a Gleason of 6 and PSA of 5ish. Anyone have any suggestions of remedies that help with urinary frequency?

Is anyone aware of clinical trials that are suited towards stage 4 BC? I’m researching online myself.

Thank you to everyone who reads and responds to this post. We are so grateful for our support and again I admire each of you. I’m learning so much about BC and I want to make in difference in raising awareness and encouraging more funding towards this terrible, tricky cancer. CANCER SUCKS!!

T4N2M0 --- this staging is based without a PET scan

One more questions, dads original lymph node was pretty large around 3.5-4cm in one area… this would make him a N2, correct? Thx

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