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

zsazsa1 Member Posts: 562 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.


  • Fridays Child
    Fridays Child Member Posts: 271 Member

    zsazsa, what great news! Congratulations and thanks for coming back to share it with us!

  • cmb
    cmb Member Posts: 988 Member

    Thanks, zsazsa, for coming back here to share your great news! I’m delighted to hear that you’ve recovered well from your treatments. The recap of your experiences from the time you first had symptoms through treatment is also helpful for others, especially those dealing with an aggressive form of uterine cancer.

    I hope the indolent B cell lymphoma stays under control so that you can continue to enjoy your life as you do now.

  • Forherself
    Forherself Member Posts: 899 Member

    So nice to hear from you and your good news.

  • MoeKay
    MoeKay Member Posts: 453 Member
    edited September 2022 #5

    Congratulations to you on reaching the 4-year NED mark, zsazsa!! May your great reports and good health continue many decades into the future!

    I sure hope that your ob/gyn was kept in the loop throughout your diagnosis and treatment. While it's not unusual for patients not to know all the signs and symptoms of uterine cancer, one would hope that an ob/gyn would be more informed. Hopefully, if your case was a learning experience for her, subsequent patients are reaping the benefit and receiving more timely diagnoses.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,246 Member

    Fantastic news zsazsa! So happy for you and I wish you 4 x 4000! Thank you for popping in and letting us know how things are going and the opportunity to celebrate this with you.

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    So lovely to reach new milestones. Congrats!

  • hopeful66
    hopeful66 Member Posts: 8 Member

    Thank you so much for sharing. I am getting prepared to start my treatments for serrous uterine cancer, so this was very helpful. Thanks again and I pray you continue to be well and enjoy your life for many years to come.