Uterine Cancer 15 years ago: I'm proof there's hope

@tapdancer:
Thank you for posting. I am a Mayo patient as well. I have been diagnosed with 3Ciii carcino-sarcoma. In September I had a complete hysterectomy and started chemo 6 treatments 3 weeks apart. I am also getting an infusion of immunotherapy which is jemperli. I will continue that for 1 to 3 years or as long as I can tolerate. I just had my 4th treatment of radiation. I am to have 25. Then 3 brachytherapy treatments. I just had a CT and PET that came back NED. What immunotherapy did you take and did you have brachytherapy? My Mayo Dr encouraged my when he said I would not die of this. Thanks again for posting and encouraging those of us that are in treatment.
Grateful for Mayo!!

@tapdancer Thank you for posting your experiences and your wish for hope for all of us. Like you, I don't share my diagnosis of endometroid adenocarcinoma with many people. I had a recurrence in teh vaginal cuff about two years after my initial diagnosis and radical hysterectomy and I did share with a few more people at that time. I'm very comfortable sharing details here as we all wish to support one another. For people outside of this forum and unfamiliar with cancer, I've been asked questions such as "all done now? Are you cured?" or "Do you know what caused this?". Personally I want to be supportive and helpful to others but when I was in the thick of treatment and very frightened myself I didn't feel like teaching others.

Most of us here have received our surgeries and treatments outside of Mayo Clinic. So there are a range of experiences. I went to Mayo Clinic after my initial diagnosis and have returned my regular surveillance appointments.

Correction to cookercooker comment.
I am NED

tapdancer @tapdancer
I too want to hear your story, and more details. For example, what chemo regime were on the first 2 times? Which of them do you think destroyed your kidneys,and what have you done to manage this?
I was diagnosed with serous cell adenocarcinoma Stage III C1. It metastasized to the peri-aortic region, vagina cuff and pelvic lymph nodes. I had no symptoms before going in for coloscopy.
received the usual concoction of nab-paclitaxel and carboplatin, but experienced recurrence 4 months later. I was ineligible for radiation, have my life-time dose 12 years prior for anal cancer. The doctors refuse to remove surgically the tumors saying systemic treatment was the only safe way to treat my condition. I went on a trial testing Enhuru a year ago and am not NED. This doesn't mean, however, that I can stop treatment, since serous cell is aggressive and there could still be active (or "sleeping") cancer cells present. This is disconcerting, since the routine is exhausting: I need to fly to the treatment clinic every 3 weeks, suffer side fx for two weeks thereafter, only to return after a brief respite before starting it all over again.

On that note, if there is anyone else on the Enhertu trial in Kelowna Cancer centre, I would love to connect with you.

I would love to hear more about your story and initial stage at diagnosis with Carcinosarcoma. I too have been diagnosed with this aggressive cancer and sometimes feel very defeated and scared. It would be nice to hear even more details about everything you’ve gone through. Knowing you are this many years out from diagnosis is so inspiring to hear and gives me some home.

@denisestlouie your story is similar to mine. My cancer was rare with a slim survival rate however I beat the odds somehow, some way and you can too. Please let me know what else you need to know from me. I’m happy to help.

I want to hear your story. I was diagnosed with mixed uterine serous/clear cell cancer 18 months ago. It a rare aggressive cancer. 5 years servival is about 50%. I have a targeted therapy available. Because of the targeted therapy I believe my results will not be the norm.

I feel hopeful reading this post. I haven't run into long lived people with this dancer.

Denise