Has your doctor been straightforward about your survival?

There is definitely not enough research on gyn cancers. As a Grade 2 endometrial cancer patient who has learned that EC is so vastly different from woman to woman, as well as the disappointing OS outcomes of clinical trials for the most aggressive cancers, I often feel left behind. We need a Komen-like group just for us, one that spurs not just support (shout out to all of you!) but research and data. Maybe the world just doesn’t want to picture where our cancers lie. 😉

I agree on all counts!
I am IICm p53abn grade 2 endometrioid cancer. I have found a lot of research on my mutation type. My problem is that my doctor gave me an over-the-top positive prognosis of 98% 5-year OS. Doing my own research, it's more like 36%-70% depending on other risk factors and treatment choices. My doctor (not at Mayo) has a treatment plan based on the assumption that my cancer is low risk. I have an appointment for a second opinion at the U of MN Masonic Cancer Center (I live in the Twin Cities). My husband went to Mayo for his prostate cancer and got cutting-edge care. If Masonic doesn't work out, I'm Rochester-bound.

BTW, I used to work for the VA to push for the implementation of evidence-based care for colorectal cancer. I never thought the skill set I developed there would be so personally useful. If I can help anyone else in any way, I'd be honored to do so.

I agree on all counts!
I am IICm p53abn grade 2 endometrioid cancer. I have found a lot of research on my mutation type. My problem is that my doctor gave me an over-the-top positive prognosis of 98% 5-year OS. Doing my own research, it's more like 36%-70% depending on other risk factors and treatment choices. My doctor (not at Mayo) has a treatment plan based on the assumption that my cancer is low risk. I have an appointment for a second opinion at the U of MN Masonic Cancer Center (I live in the Twin Cities). My husband went to Mayo for his prostate cancer and got cutting-edge care. If Masonic doesn't work out, I'm Rochester-bound.

BTW, I used to work for the VA to push for the implementation of evidence-based care for colorectal cancer. I never thought the skill set I developed there would be so personally useful. If I can help anyone else in any way, I'd be honored to do so.

Hi, In April 2025, I was diagnosed with Uterine Serous Cancer stage 2c m (p53abn) myometrial invasion < 50% with no lymph or spread outside of that. I had surgery May 29. 6 rounds of chemo is the standard of care, so I am told. I had 1 session of chemo in July and had extreme painful neuropathy in my feet and hands. They are still numb. Treatment was put on hold to allow my body to recover. I had Signatera test in August and result was positive (although low mil) so I am considering doing another chemo session and retaking Signatera test 4 weeks out as my Oncologist recommends. Hopefully, the next test will be negative. Like you, I was surprised at her high 5y OS and recurrence rate numbers. I do not want a reduced quality of life from 6 rounds of chemo that may land me in a wheelchair due to the neuropathy.

I'm so sorry that you experienced this. There isn't really any way to predict who will suffer most with this. Your doctor can and probably will reduce the amount of drug you receive. They stab us with the most possible for our size then turn it down to deal with the reactions we the have. I had reductions both Toxal and carboplatin twice. I'm currently cancer free.

Based upon this thread it seems that no oncologist will take a guess, educated as it might be, about recurrence. Mine included. I have told my doctor that I am aware of the reality of my aggressive disease (clear cell endometrial) and we have briefly discussed the limited treatment options currently available, especially with my “bad” biomarkers. (I follow the onc-Gyn conference research). My brain says that if the cancer returns I’m dead, so I fight that fear every day, which is not always easy.

As an aside, my father had cancer and when I went with him to an appointment he asked the oncologist how long he would have to live if he did not get a recommended treatment. His oncologist said that he could not answer that, because he was not god. My father became insistent and forced the doctor to answer. He was told two years. My father survived 17 years without a recurrence and died of other causes. So maybe I - and all of us - will be this lucky. 🤞

Hi, In April 2025, I was diagnosed with Uterine Serous Cancer stage 2c m (p53abn) myometrial invasion < 50% with no lymph or spread outside of that. I had surgery May 29. 6 rounds of chemo is the standard of care, so I am told. I had 1 session of chemo in July and had extreme painful neuropathy in my feet and hands. They are still numb. Treatment was put on hold to allow my body to recover. I had Signatera test in August and result was positive (although low mil) so I am considering doing another chemo session and retaking Signatera test 4 weeks out as my Oncologist recommends. Hopefully, the next test will be negative. Like you, I was surprised at her high 5y OS and recurrence rate numbers. I do not want a reduced quality of life from 6 rounds of chemo that may land me in a wheelchair due to the neuropathy.