After your endometrial cancer diagnosis, did you do any research? If so, where did you find the most useful information about your cancer?

[Kathy_SHARE]

I was diagnosed in 2015 with Stage 1A Grade 3 endometrial cancer. I had a robotic hysterectomy, with BSO and removal of 16 lymph nodes, followed by 6 rounds chemo and 5 of brachytherapy. After chemo, I was followed with CT scans every 6 months until 2018. From that point, I have not had a recurrence and see my gynecologist every year.

After I was diagnosed, I researched many National Institutes of Health articles and professional journals to better understand this disease. Even though my cancer was found at an early stage, my concern was the Grade 3 serous since it is an aggressive type which could recur and I wanted to get as much information as possible. I found it somewhat helpful, but the best information I received was from other people with the disease and discussing their experiences. I joined the SHARE uterine cancer support group and found other women who were going through the same thing.

Here's the link: sharecancersupport.org/cale...

Would be interested in hearing the experiences of others about what resources they explored to get more information about their cancer.

Thanks,

Kathy

[Merma Moderator]

Great question! I was also diagnosed in 2015. The doctor gave me a link to a site that he felt had accurate info for patients. Then I continued learning from American Cancer Society, and searching new terms as I learned more about my cancer. Because the cancer was ER+ and PR+ HER2-, I started also looking at breast cancer information too. When I learned about the mutations from 2nd recurrence, I got busy learning what those meant and I began following a couple of uterine cancer forums. I stumbled upon SHARE Uterine Cancer Support because I was following Metastatic Breast Cancer in HealthUnlocked. I still follow current research in MBC, ovarian, and endometrial/uterine cancers. My doctor is a professor and big in the research scene, so I always ask him about the ones that might pertain to me. I have not met any endometrial patients on my current regimen - Ibrance & anastrozole - in remission with well-managed cancer for over 5 ½ years. Would love to share notes.

[Kathy_SHARE Moderator Ambassador in reply to Merma]

Hi Merma,

Sorry for the delay in responding.

I really didn't keep notes on that research. The studies and articles I was reading were dated prior to 2015 (when I was diagnosed) and since treatment protocols have changed a lot since then, I'm not sure they would be very helpful right now. I just looked up NIH (National Institutes of Health) and searched "endometrial cancer" and read the articles related to Grade 3 serous. Most of them were an overview of endometrial cancer and treatments. These articles usually have a lot of statistics and some have similar information. I had to be specific about what I was searching for.

There are some more recent articles published after 2021 that speak to the newer treatments such as immunotherapy and others. I watched the SHARE webinar "Report back from SGO: What's New in Uterine Cancer" and found that to be extremely informative about diagnostics, treatment and clinical trials.

I was diagnosed with Stage 1A Grade 3 serous endometrial cancer and finished treatment in 2018. Fortunately I have not had a recurrence, but I agree we need to keep current with any information that will keep us informed about new treatments and therapies. That's why I participate in the SHARE support group, since everyone is at a different point in their diagnosis and we can share experiences and help each other.

All the best!

Kathy

[Tawfiklm]

Thank you Kathy for that information. Lorraine

[Whymr]

I was diagnosed May 2022 with 1b grade 3 endometrial serous cancer.After robotic hysterectomy including the apron area was taken out because serous was suspected after the biopsy. I was given 6 rounds of chemo along with 3 Bracha therapy. I was cancer free for one year the I noticed a growth on my vagina. It was biopsied and it is the same endometrial cancer. Now I am trying to get to a surgeon,(on Friday) and am oncologist (next Monday )at MSK where I had a new CT scan which shows increase in size of 3 pelvic lymph nodes and a lung spot to watch. I feel blessed that I was able to see the tumor and not rely on my locals sugen/ oncologist who does not like to give surveillance CT scans. I am working hard to get into MSK( where I went for my Bracha radiation) for my next treatments.There they also have separate surgeons and separate oncologists that work on clinical trials. I went to my local hospital for my first surgery because it was very hard to get into MSK in a timely matter and with suspected serous the aim was to get it out quickly.I don't know if my first line of treatment would have been different at MSK but I am sure that this time they will have more newer options.I am willing to drive further( 1hour )for a chance at a better outcome.

[Kathy_SHARE Moderator Ambassador]

Hi,

I'm sorry that you have to go through this and know how frustrating it can be to wait for a physician's office to call back about an appointment. It sounds like you had your scan at MSK and are now waiting for an appointment to meet with a surgeon and oncologist for follow up treatment. Is that correct?

I would suggest checking to see if there is a nurse navigator on the oncology service at MSK with whom you can speak. Very often working with a nurse specialist/navigator can help facilitate and move things along.

Wishing you all the best going forward.

Kathy