Colleen,
Your post was a great find for me, as we had almost identical diagnoses. Thank you for sharing your specifics. I hope you are still doing well with the lymphoma. It's helpful to know you did so well with the chemo, though I note your hiatus due to low WBC's.

What follows is a description of my own cancer journey to date, in hopes someone else can identify with or benefit from my experience:

My only symptom was a few drops of blood in the toilet which could have easily gone unnoticed. Ultrasound revealed a mass in my uterus, and I underwent a radical hysterectomy 2 months ago. Pathology revealed uterine carcinosarcoma. Sentinel nodes, pelvic washings were negative and my CA-125 was normal. The cancer was entirely confined to a polyp in my uterus with no myometrium invasion. My GYN-oncologist's recommendation was 3 rounds of chemo (carboplatin/taxol) @ 3 week intervals, then 5-6 weeks pelvic radiation, then 3 more rounds of chemo. Interestingly, he did not tell me my stage when he gave me the diagnosis, and kind of left me hanging as to whether a CT scan that he promptly ordered would be affect the diagnosis. I had the CT scan soon after our initial meeting, and was later told by one of the chemo nurses it showed "a couple of spots to monitor, but no tumor masses elsewhere"; my GYN-oncologist did not respond to a request for a phone call to clarify this. I was confused.

Thus, when a friend offered to use a "connection" to get me an appointment @ MD Anderson Cancer Center in Houston I jumped at the chance (would have happily taken an offer to go to Mayo!). Less than a week later I met with one of their GYN-oncologists for a 2nd opinion. MDA reviewed all the existing pathology, ultrasound & CT reports. They also obtained the original slides from my surgery and had their own pathologists review them, and took all that info to their tumor board. I learned I was Stage 1A, which was a huge surprise to me, and greatly improved my mental wellbeing. The tumor board recommended "cuff & chemo": 5 treatments vaginal cuff brachytherapy and then 6 rounds of carbo/taxol chemo. (Note the difference in radiation from my own GYN-oncologist.) For anyone reading this, if you have a rare diagnosis, please consider a 2nd opinion from a research institution like Mayo. That consultation changed my outlook from one of reluctant acceptance to empowered self-advocacy.

I subsequently met with my local radiation oncologist, who agreed with the MDA recommendation for brachytherapy (not pelvic radiation). I have already had 2 rounds of chemo, so the radiation will come after my 3rd chemo. My chemo response was fairly standard. The first two days jazzed up on steroids, nausea well-controlled, lethargic days 3-5, and felt pretty normal after the 6th day. I find that my heart rate increases during exercise, much more so than in my pre-chemo workouts, so I have to moderate workouts accordingly.

One final note about the CT scan mentioned above, my GYN-oncologist ordered follow-up tests to look at the two lesions: an MRI for my liver and a bone scan my sacrum. I had both tests last week, and I've seen the reports in my patient portal, and will review with my GYN-oncologist this week. The bone scan report was clean. The MRI report "cannot exclude metastasis" in my liver. MDA had already told me a metastasis is highly unlikely, and I hope subsequent tests bear this out. This is one more instance of the roller-coaster ride of a cancer diagnosis. Overall, I know I am very fortunate that my cancer was caught early, but these uncertainties can be a bit unnerving.