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

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

@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 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.

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.

Correction to cookercooker comment.
I am NED

@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.

@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!!

Please continue to share your story I find it helpful and inspirational. I have shared my journey with an aggressive and rare form of uterine cancer, known as USC...Uterine Serous Carcinomona. I was told at the time of diagnosis, caught very early on a routine pap smear, stage 1A. After a compete hysterectomy I was told that the cancer had not spread beyond the uterus and had not invaded the muscle....all great to hear, except that aggressive and high rate on recurrence...I had 3 brachytherapy treatments...easy with no pain or side effects...Was told no chemo necessary. 18 months later it recurred in my omentum...had 6 rounds of carboplatin and herceptin( my cancer is HER2+. after the chemo, which I tolerated well I was NED..Summer of 2024 CA 125 started trending up..no symptoms feeling great....when it reached 77 in April PET scan showed very early 2 pelvic nodes light up in scan....Was told so early not necessary to treat at that time....my feelings were why put off the enevitable...so I started treatment with Enhertu a targeted chemo for HER2+ cancer. after one treatment CA 125 was 40 after 3rd is was 22 normal range. I had my 15th treatment yesterday. and played my regular pickleball game today. Enhertu does have side effects but I have been fortunate to be able to manage them well with healthy eating exercise and great attitude. I have always been a very positive person and have never felt sorry for myself...I'm strong and a fighter so I do the best I can with what I can control..I read as much as I can about treating this monster I believe that I am in good hands with MSK. Unlike many of you, I share my story and all the details with everyone who asks ( friends and family ) I have a huge support group who get updates after every treatment and scan..I've educated many people and they all are interested in hearing and give me such positive feedback about how well i am doing...I don't know what comes next but no one knows what tomorrow had for any of us. I have heard of people doing very well on Enhertu for years keeping cancer at bay..I hope that it will keep me cancer free for a very long time !...sorry this is such a long message, I'm going to blame some of the length on the steroids that I was given yesterday as premed prior to infusion...hope some of this rant has been helpful...

forgot to add that I just turned 78 ! if that matters to anyone...

@asplon
Should say hope at the end, not home.