Questions about sarcomatoid urothelial carcinoma

You can direct me elsewhere if this is not where I need to be.

@debbieanddale , I don’t believe I have exactly the same type but as many in this great forum will advise, care and or second opinion at a major cancer center is optimal. I’m currently on Keytruda only now and so far so good, even with the side effects. One thing to investigate at Dale’s treatment center is what type of supportive care his offers. Some have “navigators” , some have palliative care programs. Although I have an AWESOME team of doctors and PA/NPs , I also have a social worker, chaplin and other support that has made a huge difference for me. My family and friends have been great and this extra support through the hospital has helped me over many “bumps”. Early on I too thought the worst when looking at the statistics, but that is generally before treatment. My doctors are optimistic but don’t over promise and keep me calm. There are so many variants and the treatment landscape is really changing. Sounds like there is a plan for Dale and he is blessed to have you. I wish you both the best!

Hello @debbieanddale, I'm so sorry you are needing this forum, but Connect is a great place for support. Perhaps Dale with benefit from joining himself. My husband's experience with UCC was more typical, though highly aggressive and muscle invasive. He is 6 years from diagnosis, with a radical cystectomy and neobladder and cancer free since that surgery. His care was at Mayo Clinic Rochester and I am a big advocate of treatment at a major referral/cancer center for optimal options with a rare cancer. Do you feel that he is able to travel for his medical care? Our local oncologist worked with Mayo team to provide excellent care under their direction. So diagnostics and surgery required travel but weekly treatment was done at home. Do you know if this was caught early at this point?

What is a neobladder? Dale can barely type me a message. He has a sub par phone and can't even get service half the time. And he is so sick right now, in pain, that he can barely do anything for himself. That's why I'm fretting is he does not have wonderful support. I too wondered about someone at the center helping him. He needs a dietary consult bc weight is falling off him. How can he ever be in shape to have surgery if he can't get help now? I am beside myself. Thank you two for responding to me. I so appreciate it. Praying for all who have to navigate a journey of this nature. Gotta brush up on my urostomy care! I need something w simple pictures to show him bc he doesn't even know what exactly is about to happen. Where is the first place bladder can usually Mets to?

@debbieanddale There are 3 options to create a new way for urine to leave the body after cystectomy. Neobladder is one and there are folks on this forum who can speak to it better than I.
I had a stoma and wear a pouch. Recovery was non eventful and care has been easy. prepping for life with an ostomy started pre-op in my case when an ostomy nurse marked the optimal place on my belly for the stoma. After the surgery my ostomy nurse trained me on how to take care of changes etc. They also had a clinic available for ongoing support and provided lots of educational materials. The major suppliers also have some good online materials. The Bladder Cancer Advocacy website has a lot of patient oriented educational materials as well.
I’m guessing he has probably had CT scans for the abdomen, chest and pelvis. From what I remember , liver and lungs were areas of concern for metastasis.

@141emp Thank you so much for responding! I worried all nights all he had to eat was Mac and cheeze. He doesn't have enough strength to cook for himself. He finally asked for someone to drive him to his treatments so I suggested they pick up food on the way home. I am a fixer and my nurse bell in my head is ringing off the hook! And any help or just a word I am so appreciative off. Thank you for responding..

@141emp Again thank you for sharing.

I suggest BCAN Inspire. There are others there with rare variants like this. Some variants like this respond spectacularly well to immunotherapy (not BCG) in cases.

@jaxfl Is this another group and how do I find them. Thanks so very much for the suggestion! 🥰

@debbieanddale The Inspire website inspire.com is full of information and divided into groups so you search for bladder cancer on the inspire site. I am assuming that Dale is not using a computer for internet access? So this site would help you help him.
I think he needs to request to see social services at the hospital for his next infusion, if not sooner. They will have the local contacts to help to arrange assistance for him. He needs home health care as well as daily food prep. Is he financially stable to pay for some assistance? We had good luck with relatives using a Meals on Wheels group to provide weekly food drop off. There are groups such as Visiting Angels where nonmedical personnel visit regularly to assist in food prep, laundry, and cleaning, as well as companionship. This can get expensive over a long term.
Keytruda does tend to knock your appetite down and make food taste different, as well as making you very tired. You can order him a case of high protein shakes like Boost or Ensure from Amazon and have it delivered to his house.
After radical cystectomy the repair options include rebuilding a new bladder from the patient's ileum which connect to urethra and ureters which is a neobladder. Others opt for a urostomy which obviously drains urine into a bag. He should have someone with him when discussing his options with his urologists. Does he have a nurse navigator to rely on through the hospital/infusion center? He is lucky to have you with your medical knowledge and concern.