Thanks for your reply , Kim! My CT scan with contrast (chest, abdomen and pelvis) was clear which was a relief. So after a Tumor Board review out was decided there would be no follow up with the the Cancer Centre due to the fact the tumors were Borderline and there was no microinvasion or micopapillary architecture and the fallopian tubes were normal and the Bilateral Salpingo Oopherectomy had been done. I realize our resources are stressed and their time is better spent working with people with cancer but I still I still had so many questions about my pathology report and would have appreciated a quick phone consult even at that point by someone with an oncology background. I tried to contact someone at the lab but they would only speak to my doctor which frustrated me as I needed an actual 'conversation' to have follow up questions answered. I spoke to my GP and Gynecologist about follow up and my GP said, annual CTs for the first 5 years, Bloodwork, watch for any changes in my health and we discussed seeing a geneticist, (testing would be out of pocket as I don't qualify for coverage as I don't have a history though both mom and sister had gynecologic issues young) and I do have a consult date for that. I'd be interested in the BRCA gene and wonder if that could change the situation. I think she suggested ultrasounds but my gynecologist did for sure. I was happy finally my gynecologist reached out to the Oncology Gynecologist who sent the report (that took weeks to come after the Tumor Board reviewed it) as she couldn't answer some things and wanted guidance in follow up. To my surprise I then got a phone call from that specialist a few days ago which really helped and made me feel better. She did recommend follow up CTs but not annually due to the large amount of radiation, annual ultrasounds, blood work annually though I didn't have a raised CA125 and they don't seem to put alot of faith in that test. Levels aren't always high even with cancer. I was instructed to watch my health, follow up if I notice any new symptoms....that was that. Had they known the tumors were borderline, the oncologist said they would have taken the uterus too at but no recommendation to do it now. Very small chance of reoccurrence. Re the atypical cells in the pelvic wash she said they wouldn't do any treatment for that. I feel that is a real grey area and it's value pertaining to a diagnosis from what I've read has changed over the years. There are other reasons people have positive washes though it makes sense that my epitheal tumors were probably the culprit and had shed before or during the surgery. Unfortunately the wash was done after, not before surgery (as recommended) which is disappointing but they had no indication from the many ultrasounds I had that they were BOTs. The whole ultrasound experience was a let down for me. It lacked consistency and direction. I think these tumors were challenging to visualize and an MRI should have been done I feel. It was recommended once but they resorted to more frequent ultrasounds. Four years this went on! I'm just glad we did the surgery when we did. It's been 20 weeks now since surgery. I had thought of seeking out another opinion but I think I need to just live and trust the expert I spoke to. My Gynecologist is being very supportive. Getting the first premature cytology report back 4 days after surgery saying everything pointed towards cancer was devastating, and even though after pathology it was downgraded and the diagnosis was BOTs I find it has taken a while to get my head around thinking I'm going to be ok, but I have to be positive. P.S. sorry for the delay, I thought I sent this! I did see a geneticist and it was quite interesting chatting to him and I am still thinking of doing it. It would possibly be helpful if I were to have a cancer diagnosis of any type in the future. He did say things change all the time and they'd be testing for new things in the future. I think it is probably more helpful if you already have cancer and you're going to the geneticist so they can assist in ensuring you're getting the best treatment available with your specific gene history. My sister and mother (with a European Jewish heritage which has higher incidences if ovarian cancer apparently) both had alot of ovarian issues and they had theirs removed quite young. There could have been a possibility their hysterectomies could have prevented any cancers, who knows. I will make a decision on that soon. It could be beneficial for my adult children but the geneticist did say you need to be comfortable receiving the results, good or bad. I saw my gynecologist 3 months after surgery and see her again in in November.
What did your second opinion reveal?
Hope all is well.