Endometrial Cancer: Noticing my blessings every day

@inquirer My prayers for you as this whole thing is so stressful. I hope you have no recurrence nor any problems with the chemo you had. Your story is giving me courage to my my decision in February, so far numbers are good and no metastases but as we all now nothing is concrete so we must move on and stay positive. We are alive!! Thank you for sharing.

@heidivet good morning just an FYI concerning CA125 .. prior to surgery my number was 10 .. go figure ??? Today it is 15 and has been 15 since treatment with enhertu brought it from 77 to 15 .. apparently my cancer shares a lot in common with ovarian cancer ... very sensitive to CA 125 marker .. good luck !

@heidivet I'm in exact same situation as you; diagnosed with Serous Endometrial Intraepithelial Carcinoma Stage 1a in June, with a few cells having invaded the musular lining. Surgery included a radical hystorectomy and removal of areas where the cancer was likely to have spread microscopically (like the omentum). One oncologist at MSK and another at UC Irvine said with a 20-30% chance of recurrence, just "wait and see" (no recommendation for chemo). However another doctor at UCLA said to do chemo so that recurrence is lessened by another 15%. I was thoroughly confused and went back and forth for months. Adding to the confusion were second and third opinions that kept changing my diagnosis; from precancer, to cancer only in the uterine lining, to a few cancer cells having gone beyond the uterine lining into muscular layer. I read as many posts as I could on sites such as this one and even discussed scenarios from the posts (thanks to people like alohman) with my oncologist. The UCLA doctor who recommended chemothetapy also gave me indepth studies to read and I reviewed them with the other oncologist who recommended wait and see. Through it all, with my brain totally exhausted, I ultimately decided to wait and see. My own logic was that no cancer was found anywhere else in my body, the areas where it was likely to exist microscopically were already removed, the extra 15% benefit did not guarantee non-recurrence nor outweigh the potential damage from the chemo itself, and it increased the chance of me becoming platinum resistent sooner if recurrences do happen later. I found many posts supporting both sides, so making this decision was really tough. I'll never know if it's best because if I do recurr, it could"ve recurred even with chemo. I just had to make a decision and stick to it. There's no clear right or wrong for people in our situation, unfortunayely.

@inquirer thanks for replying. There is a difference between our cancers. Mine is carcinosarcoma UCS vs yours which is serous. I just read a study from the NIH where they did a retrospective study and concluded that USC is more aggressive than serous. I hadn’t looked this up until now but your post prompted me to do so, so thanks for that and best wishes for continued success. Have you changed diet or lifestyle at all to improve your chances?

@alohman08 thank you for your reply. You have been through a lot but it sounds like you are maintaining an excellent quality of life in spite of it. Wishing you all the best. I don’t have all the molecular info yet on my cancer. My CA number before surgery was normal so I guess for better or worse it’s not a marker for my cancer.

@heidivet I'm in exact same situation as you; diagnosed with Serous Endometrial Intraepithelial Carcinoma Stage 1a in June, with a few cells having invaded the musular lining. Surgery included a radical hystorectomy and removal of areas where the cancer was likely to have spread microscopically (like the omentum). One oncologist at MSK and another at UC Irvine said with a 20-30% chance of recurrence, just "wait and see" (no recommendation for chemo). However another doctor at UCLA said to do chemo so that recurrence is lessened by another 15%. I was thoroughly confused and went back and forth for months. Adding to the confusion were second and third opinions that kept changing my diagnosis; from precancer, to cancer only in the uterine lining, to a few cancer cells having gone beyond the uterine lining into muscular layer. I read as many posts as I could on sites such as this one and even discussed scenarios from the posts (thanks to people like alohman) with my oncologist. The UCLA doctor who recommended chemothetapy also gave me indepth studies to read and I reviewed them with the other oncologist who recommended wait and see. Through it all, with my brain totally exhausted, I ultimately decided to wait and see. My own logic was that no cancer was found anywhere else in my body, the areas where it was likely to exist microscopically were already removed, the extra 15% benefit did not guarantee non-recurrence nor outweigh the potential damage from the chemo itself, and it increased the chance of me becoming platinum resistent sooner if recurrences do happen later. I found many posts supporting both sides, so making this decision was really tough. I'll never know if it's best because if I do recurr, it could"ve recurred even with chemo. I just had to make a decision and stick to it. There's no clear right or wrong for people in our situation, unfortunayely.

@heidivet Good morning...I was diagnosed with uterine serous carcinoma in April 2021. It was picked up on a routine pap smear ( very unusual)...no symptoms at all. I fast tracked everything because I was told from the beginning that it was a rare and aggressive form of cancer. I has a total hysterectomy and was told that it was caught very early and had not spread beyond the uterine wall. I asked about chemo and radiation and was told that chemo would not prevent recurrence in the future and that brachytherapy was recommended. I had three treatments with radiation, very easy with no side effects. 18 months later the cancer recurred in my omentum and I had 6 rounds of chemo with carboplatin and paclitaxol. I tolerated the chemo well with few side effects other than loss of my hair, which wasn't fun but I found a great wig and looked good. After the 6 rounds I was NED (no evidence of disease). my hair grew back and I continued with a 30 minute infusion of herceptin every three weeks...no side effects from the herceptin , but have echocardiograms every 12 weeks because the heart can be weakened by the drug. In August of 2024 my CA 125 began to trend upwards...and yes again the cancer is back in a very very early stage..only seen in 2 lymph nodes in my pelvic region seen on a PET scan...My doctor told me that I could put off treatment until things got worse ??? or start with a targeted chemo drug called enhertu...I chose to start treatment in May of 2025...I have had 11 treatments and again I am tolerating the drug well with few side effects.......the infusion is 30 minutes as opposed to the 4 hour treatment of carbo...and I have been able to increase the time between treatments from 3 weeks to every 4 weeks......My PET scans have been NED so thew drug is working...ohhh I should mention that my cancer is HER2 + which is why enhertu is the drug of choice. I feel great and hate that I have cancer even when the scans show no evidence of disease because I know it is always lurking somewhere. My hope is that enhertu will continue to keep cancer at bay and that if it stops working there will be other drug therapies that will work.
I have a very active lifestyle and that has continued during my cancer journey that is going on 5 years with 2 recurrences. I hope that you are luckier than I have been with recurrence. I think you need to have faith in your doctors and if you don't find another. I am being treated at MSK in NYC. and I believe that I am in good hands . Good luck to you and happy holidays !

@inquirer good morning .. I asked my oncologist about surgically removing the omentum when my cancer recurred and she said that it was not done because USC is a high grade cancer that is systemic with microscopic cells that circulate in the body where as chemo has a better chance of killing everything that's circulating. Also that it's a serious operation with a number of risks. I'm fortunate that my cancer is very responsive to treatment and hopefully it can be managed for many years while continuing my active lifestyle. .. I was told from the beginning that there was no cure for USC but that it is managed through treatment and that has been my experience.

@alohman08 Yes, hoping for remission for us all. For you, could they have surgically removed the omentum when the cancer showed up there? I personally believe cutting it out is more effective than hoping chemo kills it, because often chemo doesn't kill it. Oncologist at MSK (Dr. Makker) did tell me that if mine returns, it won't be cureable. That's probably the norm but reading posts, people have had a few recurrences, then surgery, and are now still NED 10 and 20 years later.

@inquirer Hi it sounds like you have researched and gotten a number of opinions on what is best to do given your situation. I wish my omentum had been removed because that is where the cancer recurred, but that was never suggested. My surgeon did not feel that having chemo to lessen that chances of recurrence was in order and advised against it. If he had recommended having chemo I would have had it. In retrospect, I'm not sorry that I didn't have it since there was no guarantee that it would prevent a recurrence. It's toxic poison that is going into your body and I feel that I would only want that if it was necessary as it was when my cancer recurred. As I've mentioned, I was fortunate that my cancer was knocked out after 6 treatments and I tolerated the chemo well. My CA125 was 400 prior to treatment and went down to 80 after 1 treatment and was down to 15 after 6 treatments. I wish you the best, I know it is not easy dealing with all the information and trying to make the best decision for yourself. I really only had one surgeon and one oncologist both at MSK and I did not take time to get second opinions...I moved quickly because of the aggressive nature of this cancer, that's what scared me. Thankfully I feel well , healthy and strong even though I continue to be treated every 4 weeks with a targeted chemo. I'm told there is no end to the treatment/maintenance so fingers crossed that it will keep this MF at bay !! Hoping remission for us all forever !!!