Uterine serous carcinoma: What led to your treatment decision?

Posted by dmarkz0101 @dmarkz0101, Sep 7 12:26pm

I'm new to this group. I'm 62 yrs old and was diagnosed with Invasive lobular carcinoma a year ago. I had a mastectomy 10 months ago. Now I've been diagnosed with Uterine serous carcinoma. On the 9-24 I'll be having a hysterectomy. I was told by my oncology team they recommend I do chemo afterwards. I don't want to do chemo for many reasons so I'll be passing on it. I truly feel God has a plan for all of us and whatever that plan is I'm ok with it. I won't find out what stage my cancer is until pathology report comes back so for now I sit with many unknowns. I'm so tired of cancer as I'm sure many here are. I'm a pretty strong woman but I'm also not super woman. I'm not so worried about cancer but there are many days I'm consumed with worry that my son and family have to see me deal with cancer again in only a year. I'm blessed with the best son ever and great family. There's so much more going on currently in my life and at times it's overwhelming and my brain is on overload. I also live alone and now my son and family have to come from other states to help me again. I'm a very independent woman and it angers me that I'm now disrupting their lives to help me. I guess I'm just venting my frustrations on this platform at this point. I know so many of us are in the same boat. Thanks for reading my vent. Is there anyone else that has this diagnosis of Uterine serous carcinoma?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Hi, I’m 64 and also had breast cancer diagnosis and mastectomy in
2024 followed by a uterine serous carcinoma diagnosis and hysterectomy et al in 2025. I had high grade ductal carcinoma in situ (stage 0) in my right breast and my only treatment (following mastectomy) is taking Anastrazole for 5 years. My USC diagnosis was grade 3 Stage IIc (m) (p53abn). Myometrial invasion was <50%, margins were clear, no metastasis elsewhere. My oncologist recommended 6 rounds of chemo but due to severe toxicities, I was only able to complete 2 rounds. I have 2 oncologists, one is an Oncologist/Hematologist the other is a Gynecologic Oncologist (surgeon). The Oncologist/Hematologist recommended I get Signatera test on the tumor followed by regular blood draws to detect circulating tumor DNA. So far, since July 2025, I’ve had 7 blood draws (5 negative and 2 very low “below analytical range” results.) I’m considered NED (last 3 blood draws were negative) and regular follow ups are scheduled—pelvic exams and blood draws. No scans are required while my blood tests are negative.

Note: I do believe the Anastrazole is partly responsible for the USC diagnosis given it is a cancer which thrives in a post-menopausal atrophic uterine environment.

Just my 2 cents:
As a patient, please advocate for yourself to be heard by your health team. Each patient is unique and our providers need to treat each patient as an individual not just blindly follow an ancient “standard of care”. Prayers are lifted for your upcoming surgery and recovery. Keep your spirits up—it helps immeasurably.

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Profile picture for sosophia245 @sosophia245

Hi, I’m 64 and also had breast cancer diagnosis and mastectomy in
2024 followed by a uterine serous carcinoma diagnosis and hysterectomy et al in 2025. I had high grade ductal carcinoma in situ (stage 0) in my right breast and my only treatment (following mastectomy) is taking Anastrazole for 5 years. My USC diagnosis was grade 3 Stage IIc (m) (p53abn). Myometrial invasion was <50%, margins were clear, no metastasis elsewhere. My oncologist recommended 6 rounds of chemo but due to severe toxicities, I was only able to complete 2 rounds. I have 2 oncologists, one is an Oncologist/Hematologist the other is a Gynecologic Oncologist (surgeon). The Oncologist/Hematologist recommended I get Signatera test on the tumor followed by regular blood draws to detect circulating tumor DNA. So far, since July 2025, I’ve had 7 blood draws (5 negative and 2 very low “below analytical range” results.) I’m considered NED (last 3 blood draws were negative) and regular follow ups are scheduled—pelvic exams and blood draws. No scans are required while my blood tests are negative.

Note: I do believe the Anastrazole is partly responsible for the USC diagnosis given it is a cancer which thrives in a post-menopausal atrophic uterine environment.

Just my 2 cents:
As a patient, please advocate for yourself to be heard by your health team. Each patient is unique and our providers need to treat each patient as an individual not just blindly follow an ancient “standard of care”. Prayers are lifted for your upcoming surgery and recovery. Keep your spirits up—it helps immeasurably.

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@sosophia245
Thank for for your kind message. I'm sending you huge prayers.

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Profile picture for cookercooker @cookercooker

I have serous cell endometrial cancer stage 3C. Have been on Enhertu for 1.5 years. Currently NED but treatment continues every three weeks until this therapy fails to work and the cancer returns. It's an inconvenient regime, entailing travel to the clinic (by plane) regularly. This is one of the main causes for my fatigue. Other symptoms are nausea, slight skin rash, hair loss - everywhere, peripheral neuropathy. Before this treatment was given platinum chemo but the it didn't work so well. The cancer returned 4 months later. The Enhertu works because I'm HER 3 positive 2+.

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@cookercooker
I'm sending huge prayers your way

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I was diagnosed with stage 1A uterine serous carcinoma 5 years ago. I had brachytherapy and told that chemo was not recommenced because there was no spread beyond the uterus. 18 months later it recurred in my omnentum and I had 6 rounds of carbo/platin along with herceptin ( a monoclonal antibody for HER2 + cancer). I managed the chemo well, no nausea, little fatigue, no neuropathy and lost all my hair ( had a fabulous wig) no one realized that it was not my hair ! I continued with herceptin infusions ( 30 min) every 3 weeks with no side effects, until my CA 125 numbers started to rise 18 months after the chemo. A PET scan revealed 2 very small nodes lite up. My oncologist said it was very early and we could wait until after the summer ( 2025 ) to check again. I choose to begin enhertu ( targeted chemo for HER@ + cancer). May of 2025. After one infusion ( 30 minutes) my CA 125 went from 70 to 37....almost in normal range. My cancer is very sensitive to my CA 125 so it's a good way to detect what is going on. I have been on enhertu since May 2025 and all scans have been NED and CA 125 14...because of my strong response I have been able to have the treatment every 4 weeks instead of every 3 weeks. The side effects are not pleasant but manageable. I have been able to continue my very active life style, pickleball twice a week and strength training 3 times a week. Lots of time with family and friends and of course lots of walks with my pup. Enhertu is a very strong targeted chemo used as a maintenance drug for HER + cancer..I am hopeful that it will keep this aggressive rare cancer at bay for many many years to come. I am a very healthy, strong independent 78 year old with much more life to live !!

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Sending huge prayers your way.

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Profile picture for dmarkz0101 @dmarkz0101

Sending huge prayers your way.

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@dmarkz0101, I added your discussion to the Gynecologic Cancers support group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

You may also be interested in this related discussion:
- Uterine Papillary Serous Carcinoma: What treatments did you have?https://connect.mayoclinic.org/discussion/uterine-papillary-serous-carcinoma/

Please consider yourself (and anyone else in this group) also invited to join the monthly support group meeting hosted by Mayo Clinic social work held the second Monday of every month from 5:30 p.m. to 6:30 p.m. Eastern time. https://connect.mayoclinic.org/events/

I can understand your strong emotions of being mad, probably also sad at times, that you are disrupting your family to care for you through a second run with cancer. It sucks. It's not in your control.

Do you have a good rapport with your oncologist to ask questions and get frank answers of how things might be expected to progress with or without further treatment? How are you doing today?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@dmarkz0101, I added your discussion to the Gynecologic Cancers support group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

You may also be interested in this related discussion:
- Uterine Papillary Serous Carcinoma: What treatments did you have?https://connect.mayoclinic.org/discussion/uterine-papillary-serous-carcinoma/

Please consider yourself (and anyone else in this group) also invited to join the monthly support group meeting hosted by Mayo Clinic social work held the second Monday of every month from 5:30 p.m. to 6:30 p.m. Eastern time. https://connect.mayoclinic.org/events/

I can understand your strong emotions of being mad, probably also sad at times, that you are disrupting your family to care for you through a second run with cancer. It sucks. It's not in your control.

Do you have a good rapport with your oncologist to ask questions and get frank answers of how things might be expected to progress with or without further treatment? How are you doing today?

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@colleenyoung Thanks so much for reaching out. I will definitely look into the links you shared with me. Strange as this may sound I'm not afraid of cancer. I truly see it as just another journey I'm on like so many. These are the cards I was dealt for whatever reason. Only God knows why. At the end of the day things could always be worse. I'm extremely blessed with the best son, family and a few true friends. I have asked my oncologist questions and I have more in mind. My team at Mayo has been pretty good and I'm very grateful to be a patient at Mayo. We all have ups and downs in life and today I'm going to push to be as productive as I can for my son coming and my upcoming hysterectomy. Thanks for your kindness. I'm going to have a good day and I wish you the same.
Donna

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