@bunyipbaba. Hello, and welcome to Mayo Clinic Connect. We aren't medical professionals here however we can give you support.

You've given a comprehensive description of what you are going through and it must have been such a shock to get a diagnosis of primary vaginal cancer. No one wants to hear the diagnosis of cancer from their doctor. I was shocked when I got the diagnosis of endometrial cancer from my gynecologist. In fact, I got lost on the way home and I was driving a very familiar route.

From what've I've read vaginal cancer is indeed rare. It's a lot to deal with especially with the other medical problems you have. I understand why you you'd want treatment for the cancer without compromising your quality of life that is already affected by fibrotic pulmonary sarcoidosis.

Do you feel comfortable with your cancer care team to ask more questions about side effects of your treatments? And also with your other doctors (a pulmonologist?) to get some added information about how low dose cisplatin will affect you? Would you like another opinion from a comprehensive cancer center such as Mayo Clinic or MD Anderson? I would want an opinion from one of these National Cancer Institute Centers where they see and specialize in seeing vaginal cancers.

-- National Cancer Institute
https://www.cancer.gov/research/infrastructure/cancer-centers/find
I have also provided the link to Mayo Clinic. This link provides access to all three campuses of Mayo Clinic in Minnesota, Arizona, and Florida. You can self-refer but it will be more effective to get a referral from your doctor.

-- Mayo Clinic Appointment Requests
http://mayocl.in/1mtmR63
Could you let me know what you decide and what you find out?