@leahchawkins Hello. I was diagnosed with primary vaginal cancer in March 2023. I am now 76 years old, had a long history of HPV and many years of immunosuppression (prednisone) for pulmonary sarcoidosis. My doctor said it was a perfect combo for developing vaginal cancer. I found the tumor on 2/17 during a shower and had an appointment the next day with my long-time ob-gyn. I was referred to a nearby NCI, had an MRI on 3/2, surgery to remove the tumor on 3/10, and a PET scan on 3/27. This was followed by external beam pelvic radiation 5 days a week for 7 weeks along with 6 rounds of weekly carboplatin infusions. As you can see, things moved quickly once I found the tumor. I was able to have my sister with me during all the chemo sessions and any meetings with the gyn-onc and/or radiologist. It helped immensely that she took notes. Since the hospital has MyChart, I saw all test results the same day although I didn't always understand them. I am scheduled for a surveillance MRI on 7/14, a regular internal exam with the gyn-onc on 7/23, and CT scan on 8/18. These follow-up tests are always anxiety provoking.
As I'm sure you have discovered, this is a very rare cancer about which very little is known. As best I can tell, treatment protocols are generally extrapolated from those used for cervical cancer since there are too few cases for controlled studies. As with any medical issues, be your own best advocate. Ask for what you need and ask questions until you get answers you can understand. If you need to do some research, be sure to stay on reputable sites like this one. At 2 years post surgery, I try to live as if all is well until I'm told otherwise. Best of luck with your journey. It's lonely but filled with unexpected kindnesses.