Recurrence after TMT (Radiation)- Options being reduced and concerned

Posted by journeynw @journeynw, Feb 14 3:35pm

Hi,
History: Muscle Invasive BC, high grade
Unfortunately though I live in a city of >200k there is no urology support nearby which has been an issue)

I opted for TMT, however before treatment I was admitted to the hospital - tumor had clogged my tubes and had to get a nephrostomy (tubes directly from Kidneys to bags).

On hindsight (IMO) going forward with radiation was probably not the better approach once my tubes were blocked. But I was not aware the problem down the road it would bring (difficulty to operate) and I was immediately sent to do radiation after a few rounds of Chemo.

Adverse reaction to cisplatin and we switched to Keytruda + Padcev. It was working! I had complete remission! But then two accidental (at least 2) over dosages (admitted by med team) occurred of PADCEV and I had a severe reaction - was laid out/fever/etc and ended up with severe neuropathy. I can barely walk now.

I had to take a break from treatment and the cancer recurred in my bladder, as well as 2 enlarged lymph nodes.

I wanted to remove my bladder since it is not working and is just a risk now but that option is being withheld. The surgeon I have says it is too risky.
I am limited for now to Gemcetabine as treatment as the neurologist is discouraging immunotherapy (believes the keytruda caused an immune overdrive).
*I feel lost*. The area I live in is in crisis with medical resources. I get only 5-7 minutes with my oncologist (general) as he is swamped.

My question: has anyone on here had their bladder removed after radiation therapy? Ultimately if I can get the cancer back under control I think that is necessary or it will continue to make problems?

Do I need to seek out help elsewhere?

Thanks and best to all.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | 6 days ago

Hello @journeynw. My husband has battled aggressive muscle invasive cancer for 6 years and now is cancer free with a neobladder. Like you, we have found that adverse events are not always discussed prior to treatment. It is a question we have learned to ask so we can make an educated decision about treatment.
Yes, you would do best to seek out a second opinion, and hopefully at a large referral center where you will be offered more options and perhaps a Urology oncologist with the newest available treatments. All of my husband's surgical care was done at Mayo Clinic in MN. That's a 10 hour drive from Ohio but very much worth it for the quality of care. Infusion treatments were done locally with local oncologist working closely with Mayo urologist. Even a video virtual visit to begin can be a start. You first provide all of your medical history and scans so they can be evaluated prior to your appointment. Don't let your location dictate your medical care. You want the best. Has your doctor discussed referral with you yet?

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