1. < Gynecologic Cancers

Just diagnosed endometrial adenocarcinoma: What can I expect?

Posted by canadiangal55 @canadiangal55, Jan 29 9:47am

Hello! I'm 55 years old and I've been in menopause for about 2.5 years and after a week of cramping and some discharge, I got a "period" again. The bleeding/spotting/ cramping started Dec. 2023 and hasn't really stopped! I met with my family doc in early Jan. and she ordered an ultrasound and a biopsy and I received results late last week - endometrial adenocarcinoma. She referred me to the cancer centre in my city and now I'm left to wait for that appointment, with my own thoughts, and I'm scared. My doc also mentioned something about bowel/ colon cancer and that really has me concerned - I'm waiting to get another appointment to gather more information. I'm trying to balance enough and too much information so that I can approach this journey informed, hopeful and practical. If anyone has sage words or is willing to share their own story, I would be grateful. I have an incredible husband, family and faith community I will lean on as I learn more. Many thanks from Canada.

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canadiangal55 | @canadiangal55 | Feb 1 9:49am
In reply to @gynosaur42 "Hello, @canadiangal55, I, too, was diagnosed with endometrial adenocarcinoma a year ago, at age 61. As..." + (show)
@gynosaur42

Hello, @canadiangal55,

I, too, was diagnosed with endometrial adenocarcinoma a year ago, at age 61. As Helen described, it was frightening. I was told that information over the phone while at home, so didn't have to drive myself afterward, thank goodness! I underwent surgery 2/23 and have been blessed with no spread detected and no recurrence to date.

I absolutely love the support offered by all here (and have hung on it for this past year+ now) and the specific suggestions for coping offered by @lbrockme, @aardvark2118, @diaz so far. Not sure what I would add to those as they are so key. I, too, agree that your hopeful and balanced outlook and the support you gather around you will continue to help you so much along the way. I will add you to my internal list of those I carry with me and send my best wishes each morning as I scan Mayo Connect.

Echoing.."we are with you in this journey."

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@gynosaur42 I feel so blessed by the warm welcome of this online community. I go for a colonoscopy tomorrow and so the testing begins as I get closer to understanding the scope of my cancer and a treatment plan. I will also lean on this group of wise women as my journey unfolds.

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1 reply
c3b4 | @c3b4 | Feb 1 12:30pm
In reply to @diaz "My endometrial adenocarcinoma diagnosis was an accidental discovery as I had no symptoms. During a different..." + (show)
@diaz

My endometrial adenocarcinoma diagnosis was an accidental discovery as I had no symptoms. During a different medical test I was encouraged to be checked out by a gynecologist and was then diagnosed with a grade 3 endometrial cancer February 2023.
I underwent a hysterectomy followed by 6 cycles of Chemotherapy with Paclitaxel and Carboplatin, followed by 4 cycles of Brachytherapy that I finished December 2023.
The side effects for me were Nausea and I chose not to take nausea medication. Instead I boiled ginger root and drank ginger tea which alleviated the symptom.
It is very important to write every question you have to ask when you see your oncologist. You may also want to read the information available for this diagnosis in the American Cancer Society website that may help you formulate additional questions.
The one thing I would suggest is to email the Cleveland Clinic mentoring program at https://4thangel.ccf.org. You do not have to be a patient of the Cleveland Clinic to join and I found this program very helpful. I was matched with a mentor that had the same stage and grade of endometrial cancer that I had and underwent the same treatment. She was extremely helpful sharing her experience after being cancer free for 10 years.
We are with you in this journey.

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@diaz I hope you are doing well...a squeeze of lime or lemon in warm water helps, too. And if you like the scent of lemon grass and lavender and have access to them, it's nice/calming to have them around the house (be sure you're not allergic to them).

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diaz | @diaz | Feb 1 12:59pm

@y3b4 Thank you for your suggestions. I always have fresh squeezed lemon juice in the house and I'll try it with warm water. I am very familiar with lemon grass. My mother used to make lemon grass tea when I was young. I appreciate your message and will continue to try suggestions that will hopefully help me stay calm in this new life chapter.

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celia16 | @celia16 | Feb 1 4:24pm
In reply to @diaz "My endometrial adenocarcinoma diagnosis was an accidental discovery as I had no symptoms. During a different..." + (show)
@diaz

My endometrial adenocarcinoma diagnosis was an accidental discovery as I had no symptoms. During a different medical test I was encouraged to be checked out by a gynecologist and was then diagnosed with a grade 3 endometrial cancer February 2023.
I underwent a hysterectomy followed by 6 cycles of Chemotherapy with Paclitaxel and Carboplatin, followed by 4 cycles of Brachytherapy that I finished December 2023.
The side effects for me were Nausea and I chose not to take nausea medication. Instead I boiled ginger root and drank ginger tea which alleviated the symptom.
It is very important to write every question you have to ask when you see your oncologist. You may also want to read the information available for this diagnosis in the American Cancer Society website that may help you formulate additional questions.
The one thing I would suggest is to email the Cleveland Clinic mentoring program at https://4thangel.ccf.org. You do not have to be a patient of the Cleveland Clinic to join and I found this program very helpful. I was matched with a mentor that had the same stage and grade of endometrial cancer that I had and underwent the same treatment. She was extremely helpful sharing her experience after being cancer free for 10 years.
We are with you in this journey.

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@diaz ,
Do you mind sharing, when you were seen by the gynecologist and diagnosed, what test did they do to get that diagnosis?

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diaz | @diaz | Feb 1 7:19pm

I will detail below my process that is unusual because I had no symptoms.

February 23, 2023 - I had an abdominal scan for an unrelated issue. The scan showed a distended endometrial cavity and the radiologist requested that further evaluation be done by a gynecologist.
March 1, 2023 - I saw a gynecologist that was unable to perform a biopsy in her office.
March 15, 2023 - a surgical biopsy was attempted in the operating room. That was also unsuccessful and I was then referred to a gynecologist oncologist .
April 28th - I saw the gynecologist oncologist and because I had no symptoms I was given the choice to get follow ups to see what symptoms developed or have a hysterectomy and I chose to have a hysterectomy.
June 6, 2023 - I had a hysterectomy and the pathology results indicated that I had Stage 1, Grade 3 adenocarcinoma. Since the grade is considered aggressive, I was referred to an oncologist.
July 11, 2023 - I started Chemo with Paclitaxel and Carboplatin and underwent 6 cycles with each cycle having a duration of 5 hours.
November 30, 2023 - I started 4 cycles of brachytherapy radiation.
December 15, 2023 - Finished Radiation therapy.
January 22, 2024 - had follow up blood tests that showed a CA 125 result of 12 and I will have follow ups with blood tests every three months and semi-annual scans for the next two years.
As you can see from the time table, it took over three months to get from the initial scan result in February to my June surgery because I had to navigate getting so many different test and doctor appointments .

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again2 | @again2 | Feb 2 10:15am
In reply to @aardvark2118 "Hello. My best advice is do not google fir info. Write down your questions and bring..." + (show)
@aardvark2118

Hello. My best advice is do not google fir info. Write down your questions and bring them with you to the doctor. There is too much info out there and so much will most likely not apply to you. I was diagnosed with the same as you December 2022. Completed chemo and radiation by august 2023. Everyone is different but I had incredibly easy treatments so it doesn’t have to be like it is depicted so often in the movies/tv. It’s easy to say but try not to worry too much. When your mind starts worrying get up and walk. There are lots of us out here to support you. Sending you positive thoughts!! Take care

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Reassuring to read good news from many of you.
I'm new here and finding my way around.My first endometrial cancer was Oct.2020. I was in good health but suddenly started hemorrhaging ,went to the ER, did a cat scan and sent me to another hospital by ambulance around after midnight and surgery was performed the following day. Saw an oncologist oncologist who operated.I was on blood thinners for my heart and had to be cleared by a cardiologist. Had 6 rounds of chemo and 25 of radiology and was declared cancer free. Skip to Feb.2023 and whoops, pet scan showed minor growths that were inoperable.More chemo,etc with Keytruda and PetScan in Nov. showed all was gone.New PetScan for later this month. Got through the first treatment pretty good, this time around, many problems associated with treatment with no solution.Tried quite a few
I go to Duck,duck go as well as to various cancer centers to look up info.
I learned things here I was unaware of. Thanks to all.

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gisellef | @gisellef | Feb 3 8:46am

It’s important to remain calm and optimistic. Not sure exactly where you live but given the general state of health care in Canada I would advise seeking treatment as quickly as possible. If that means a trip across the border, do it for the sake of your life. That’s what my family member had to do. She ended up getting a new and innovative treatment very different from what was available to her. Results were much better than expected. Be your own advocate. Wishing you the very best. ♥️

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11 1:25pm
In reply to @canadiangal55 "@gynosaur42 I feel so blessed by the warm welcome of this online community. I go for..." + (show)
@canadiangal55

@gynosaur42 I feel so blessed by the warm welcome of this online community. I go for a colonoscopy tomorrow and so the testing begins as I get closer to understanding the scope of my cancer and a treatment plan. I will also lean on this group of wise women as my journey unfolds.

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Hi @canadiangal55, how are you doing? The diagnostic testing phase can be draining. It's a lot of appointments. Do you have a treatment plan?

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canadiangal55 | @canadiangal55 | Feb 13 4:00pm

@colleenyoung Thank you for checking in... I appreciate this online community. I have an appt booked with a gyne oncologist Feb.27th who will go over my CT scan results and hopefully provide a treatment plan. I am learning how to be patient and sit with my own thoughts, that's for sure.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 13 4:38pm

@canadiangal55. Your appointment is this month and just a few weeks away so that’s good. I do hope that the gyn-oncologist spends time with you, provides you with helpful information and helps you figure out the best treatment plan for you. Yes, I know what you mean about learning to be patient. While you are sitting with your thoughts have you thought about writing them down? Or drawing?

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