Endometrial cancer at a late age

Posted by annguastel @annguastel, Sep 27 6:34pm

I have been diagnosed with endometrial cancer and need a full hysterectomy removing lymph nodes possibly chemo after. I am 81 years old and don’t know whst my chances are to recover well after the surgery

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

Profile picture for jeanknoll986 @jeanknoll986

@greatgrandma2025
I was Stage 3 ii on diagnosis. I was 59 yrs old and had only 1 IV in my life before that. I had never had children and my first oncologist said my uterine cancer, that had spread, was most likely due to how my late menopause onset meant my hormones went wacky. No family history and very healthy up to that. I had almost no symptoms, but my family Dr noted something in my regular bloodwork for thyroid and within days, my life took a turn I did not see coming. You must do what you think is best for you. A PET scan I had after my last chemo showed no cancer anywhere, so very happy about that! Radiation followed that. I wish you all the best going forward.

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@jeanknoll986 Thank you so much for posting . I am encouraged by your success. I make my decision on treatments by February. So many of us don't have the same prognosis and my prayers are with all of us. Have a wonderful thanksgiving we all have so much to be thankful for. Our health care teams and those in our lives that have to share our journey and faith that God still has a plan for us.

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Praying for a positive surgery and know that we are hoping they remove it all. I'm 80 and so far surgery was a success. Stay the course, be strong, and have faith most of all. God Bless you. Hugs and let us know how things are going. This site will help you with whatever you want to know. I have decided to wait on treatments as all my scans have been good. That is a personal decision when you get through surgery. One day at a time. Hugs!!!

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Profile picture for alohman08 @alohman08

My cancer was found during a routine pap smear..very unusual to find uterine cancer this way...it was very early and was just a spec on wall of the uterus ....all lymph nodes were clear no cancer anywhere but this tiny spec....no spread...I asked about chemo and was told that it wasn't called .for..I did have 3 rounds of radiation lasting 4 minutes each as a precaution . I was cancer free for 18 months and then it recurred, I had chemo, lost all my hair ( had a fabulous wig ) tolerated it well and at the end of the 6 rounds I was again NED ( no evidence of disease )....that also lasted for about 18 months and as my CA 125 creeped up past the normal range ( 77) I had a PET scan that shed very early node activity...I started enhertu in May of this year and have infusions ( 30 min ) every 4 weeks.. my last PET scan which was Saturday 11-8 I am again NED...Enhertu side effects are milder that the other chemo...still unpleasant but manageable.....happy there is a drug that is working for me and hopefully will continue to keep the cancer at bay for a long long time ! and you're correct about that one rogue cell!! I think they are always there just need to keep them quiet !! BTW I know no one with this kind of rare agressive cancer. If you want to share stories I would be happy to do sp privately...not sure how that's done. Where are you being treated ?

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@alohman08 hi, 69 yr old flight attendant here, diagnosed with endometrial carcinosarcoma in early September this year after excessive bleeding. Stage 1A, had hysterectomy at Dana Farber in Boston. I recently moved to Jacksonville to continue treatment at Mayo and be near family. I had 2nd of 6 chemo (carbotaxol) and am doing well. The Radiologist gave me the choice of brachytherapy or radiation post chemo, but stated that only radiation beam addresses the lymph nodes whereas BT only addressed the actually area around where the former tumor was so I chose the beam radiation. So this is all still new and shocking, hard to constantly hear and read “because of your very aggressive type of cancer” with this diagnosis but encouraging to hear about 12 year+ survivors…so let’s plan on that route! If you’d like to text privately I’m all in!

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Profile picture for marlenephagen @marlenephagen

@alohman08 hi, 69 yr old flight attendant here, diagnosed with endometrial carcinosarcoma in early September this year after excessive bleeding. Stage 1A, had hysterectomy at Dana Farber in Boston. I recently moved to Jacksonville to continue treatment at Mayo and be near family. I had 2nd of 6 chemo (carbotaxol) and am doing well. The Radiologist gave me the choice of brachytherapy or radiation post chemo, but stated that only radiation beam addresses the lymph nodes whereas BT only addressed the actually area around where the former tumor was so I chose the beam radiation. So this is all still new and shocking, hard to constantly hear and read “because of your very aggressive type of cancer” with this diagnosis but encouraging to hear about 12 year+ survivors…so let’s plan on that route! If you’d like to text privately I’m all in!

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@marlenephagen, welcome. I appreciate your offer to text privately and share your contact information. We recommend not sharing your personal email on a public forum, but rather to do so using the secure private messaging. You will be able to send private messages in a few days. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

Marlene, have you started radiation treatments? How are you doing?

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Profile picture for marlenephagen @marlenephagen

@alohman08 hi, 69 yr old flight attendant here, diagnosed with endometrial carcinosarcoma in early September this year after excessive bleeding. Stage 1A, had hysterectomy at Dana Farber in Boston. I recently moved to Jacksonville to continue treatment at Mayo and be near family. I had 2nd of 6 chemo (carbotaxol) and am doing well. The Radiologist gave me the choice of brachytherapy or radiation post chemo, but stated that only radiation beam addresses the lymph nodes whereas BT only addressed the actually area around where the former tumor was so I chose the beam radiation. So this is all still new and shocking, hard to constantly hear and read “because of your very aggressive type of cancer” with this diagnosis but encouraging to hear about 12 year+ survivors…so let’s plan on that route! If you’d like to text privately I’m all in!

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@marlenephagen hi...I'm sorry that you are dealing with this cancer, but it sounds like you are in good hands. I don't think our cancers are the same...mine is a serous carcinoma not a sarcoma...not sure what the difference is ?? My doctor did not recommend chemo or external radiation after my hysterectomy as I was told that there was no spread to any lymph nodes and the cancer was a tiny spec on the uterine wall. I had 3 treatments of brachytherapy and that was all. When the cancer recurred 18 months later, I had 6 rounds of chemo...which I tolerated well. I would love to chat privately but don't know how to do that ??

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Profile picture for marlenephagen @marlenephagen

@alohman08 hi, 69 yr old flight attendant here, diagnosed with endometrial carcinosarcoma in early September this year after excessive bleeding. Stage 1A, had hysterectomy at Dana Farber in Boston. I recently moved to Jacksonville to continue treatment at Mayo and be near family. I had 2nd of 6 chemo (carbotaxol) and am doing well. The Radiologist gave me the choice of brachytherapy or radiation post chemo, but stated that only radiation beam addresses the lymph nodes whereas BT only addressed the actually area around where the former tumor was so I chose the beam radiation. So this is all still new and shocking, hard to constantly hear and read “because of your very aggressive type of cancer” with this diagnosis but encouraging to hear about 12 year+ survivors…so let’s plan on that route! If you’d like to text privately I’m all in!

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@marlenephagen I would like to add my welcome to Mayo Clinic Connect's Gynecological Cancers Support Group. I was 67-years-old when I was diagnosed with endometrial cancer. That was 6 years ago. In my case the cancer was endometrioid adenocarcinoma, FIGO Grade 1, Stage 1a and so a less aggressive cancer. When I first heard the word "cancer" from the gynecologist who did the D&C and gave me the results I was so stunned that I got lost while driving home on a very familiar route.

In your place I would be very tired of hearing "because of your very aggressive type of cancer". I suppose the medical providers continue saying this aloud to let you know why they are making the recommendations? Still it is very encouraging to hear about survivors more than 10 years out from their original diagnosis.

Here is what I can share. I return to Mayo Clinic in Rochester, MN for cancer surveillance appointments as recommended. I had recurrence two years after the original diagnosis and the recurrence was found during one of my appointments at Mayo Clinic. I moved to Rochester for 6 weeks for radiation therapy (external beam and brachytherapy). Chemotherapy was not recommended and I have not had chemotherapy.

My next appointments will be December 8-9 (next week). The more years that go by (four years since the recurrence) the more I can move the word "cancer" and worry from the front of my face blocking the best parts of my to the rear view mirror. I carry the worry with me and I never forget about it. But the worry is not omnipresent.

Yes, let's plan on more years with you traveling the world as a flight attendant and me as a passenger on the flight.

When do you start the radiation therapy?

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Just stay here it is so helpful and you learn what all those abbreviations are in your diagnosis. Praying for you as we are the same age and concerned about the same things. I will be looking for your posts. God Bless you and your family.

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