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Four years after mixed serous/clear cell uterine cancer, and no evidence of recurrence.

zsazsa1
zsazsa1 CSN Member Posts: 573 Member
edited September 2022 in Uterine/Endometrial Cancer #1

When I was first diagnosed, I found hope here in the postings by long-term survivors of this highly aggressive cancer, in addition to the amazing companionship and support from the women on here who were so generous in sharing their time and their experience and their advice. I'm now four years out from diagnosis, probably about 5 years out from onset of symptoms. I just had my annual scans (done for another condition) and Ca-125. MRI and Ca-125 show no evidence of recurrence.

About 5 years ago, I developed at age 56 new scant clear watery vaginal discharge. I saw my OB-GYN, who did an internal exam, which she felt was normal. She advised me that I did not need the transvaginal ultrasound that I had scheduled, so we cancelled it. She told me that clear discharge was not a concern - that the symptom that I needed to watch for was blood. The clear discharge continued, but it took a year before it finally darkened to blood. By that time, I had a 22 cm uterine lining, a Pap smear that showed abnormal cells, and a uterine biopsy that showed mixed serous/clear cell uterine cancer. I had a hysterectomy with only bilateral sentinel node biopsy. The tumor was in the upper part of the uterus, and there were isolated tumor cells found in one of the lymph nodes biopsied. Because there were only isolated tumor cells in the node, and no organized metastases, I was staged as 1a, with lymphovascular invasion, of course. I had 6 rounds of carboplatin/Taxol/trastuzumab (I had to go to a specialist at Yale to get the trastuzumab justified - my local gyn onc and med onc thought I wouldn't qualify for it). I declined the last round of Taxol because of the beginning of neuropathy, but I had iced my hands and feet during infusions, which I think helped - I have little to no trouble with neuropathy. I also had pelvic IMRT radiation (external beam), even though I'd been advised to only have intravaginal radiation. I was afraid that the isolated cells found in the sentinel node would lead to metastasis, and since the tumor had been higher up in the uterus, not down by the vagina, I chose the pelvic IMRT radiation. I had a lot of trouble with very severe diarrhea from the radiation. Probiotics helped, and I think that they would have helped more had I known to start them a week before beginning radiation.

I'm fully recovered from the surgery, chemo, and radiation. I'm also dealing with an indolent B cell lymphoma (which looking back probably began well before the uterine cancer was diagnosed, was not a consequence of treatment). But I'm feeling quite well and enjoying life.

I want to let others know that uterine serous/clear cell is treatable, survivable, and that one can have good quality of life afterwards. Wishing the best to any women who are going through this now. I am hoping that my history of four years so far without recurrence brings you hope, as you go through diagnosis and treatment.

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