Endometrial cancer: I'm so scared

Posted by sbryant @sbryant, Mar 16 7:23am

Hello my name is shelley. I will be 55 in June. I started HRT for menopause 18 months ago. After a year I started having spotting daily for 6 months. I went in for an ultrasound and they found a polyp. I went in for a hysteroscopy and DNC they found 2 or three polyps in my uterus and one on the cervix. Results came back the uterine polyps are endometrial carcinoma. The cervix is benign.
That was the first surgery I have ever had. It’s been two days since I got the call and I can’t stop crying. I am so scared. I am afraid to tell my kids. I expect a call from the oncologist this coming week.

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

klue | @klue | Mar 17 7:33pm

In reply to @sbryant "Sorry to hear? Can I ask what is figs?" + (show)

FIGO stands for International Federation of Gynecology and Obstetrics (FIGO).

it's the scientific language that doctors and pathologist use when speaking about the cancer and the hallmark characteristics of each stage.

Helen, Volunteer Mentor | @naturegirl5 | Mar 18 7:01am

In reply to @sbryant "Sorry to hear? Can I ask what is figs?" + (show)

@sbryant

Here is an explanation of FIGO in endometrial cancer. FIGO Grade refers to the organization and appearance of the cells that were obtained during biopsy. Typically FIGO Grade is assigned by the pathologist who views the biopsy and writes the pathology report.

American Cancer Society: Endometrial Cancer Stages:

-- https://www.cancer.org/cancer/types/endometrial-cancer/detection-diagnosis-staging/staging.html

Does this help to explain?

sbryant | @sbryant | Mar 18 10:26am

In reply to @naturegirl5 "@sbryant Welcome to Mayo Clinic Connect. You've come to the right place to get support from..." + (show)

@naturegirl5

@sbryant Welcome to Mayo Clinic Connect. You've come to the right place to get support from many of us who have experienced endometrial cancer. Some of us have been recently diagnosed @suesam and others @denisestlouie were diagnosed within the past year and received treatment. I was diagnosed and had a hysterectomy in 2019 and a recurrence in 2021.

I can assure you that everything you are feeling while awful to feel in the moment is normal. Crying, shock, anxiety, irritability, impatience, insomnia - when you think about who wouldn't feel these things when they hear the word "cancer"?

I'm big on advocating for ourselves. If you don't hear from your oncologist's office in a few days then I recommend you call the office and ask for an appointment that will happen very soon. Many of us did that and some have even suggested calling daily to check on any cancellations. The sooner you see your oncologist and discuss a plan I think the better you might feel. I did anyway. It's the "not knowing" part that makes me so very anxious so once I knew what the plan was and I had a cancer care team to work with I was still frightened but I began to feel less anxious.

Before you see your oncologist I recommend you write down your questions. Also, please consider taking someone with you for a second set of "ears" because this is very stressful appointment in which your stress and sadness could influence what you remember about the appointment.

Have you seen your pathology report? Or did your doctor tell you what kind of endometrial cancer was diagnosed? There is more than one kind and some are non-aggressive while others are more aggressive.

Here is something for you to read which I hope will help you to write down your questions for the oncologist:

American Cancer Society: What is Endometrial Cancer?

-- https://www.cancer.org/cancer/types/endometrial-cancer/about/what-is-endometrial-cancer.html

Also, here is the Mayo Clinic page on Endometrial Cancer:

-https://www.mayoclinic.org/diseases-conditions/endometrial-cancer/symptoms-causes/syc-20352461

What do you do for yourself to self-soothe when you are upset like this? Do you soak in a warm bath with bath salts? Go for walks? Talk with and pet your companion animals (I haven't been doing this one since I was very young. Animals are the best listeners)?

Jump to this post

Thank you. I’m so scared right now I’m afraid to research anymore. I do have the pathology report but I do not understand it. My fear is that it is everywhere. I have a business I’m afraid of losing and so many other things going on.

klue | @klue | Mar 18 3:36pm

In reply to @sbryant "Thank you. I’m so scared right now I’m afraid to research anymore. I do have the..." + (show)

does the pathology report list a FIGO grade or stage?

Helen, Volunteer Mentor | @naturegirl5 | Mar 18 5:54pm

In reply to @sbryant "Thank you. I’m so scared right now I’m afraid to research anymore. I do have the..." + (show)

@sbryant Yes, this is a frightening. Although the oncologist will have a copy of your pathology report you could take your copy with you to the oncologist and ask for an explanation.

I think it's a good thing not to do much research on your own and especially stay away from Google searches. These are unlikely to take you to valid and reliable sites if you want to read anything helpful.

Who do you share your worries with? Do you have a family or a spouse who can support you through this difficult time period?

flaviacwood | @flaviacwood | Mar 18 6:29pm

Hello Shelly, I was diagnosed with EC in 2023 and had surgery in 2024. I was terrified. The waiting is the most painful. I meditated everyday, thinking positive about a gentle outcome. I went in YouTube and listen to TedTalks with people who have been through cancer and now are doing well./ Anything that can help you to stay calm and think positive. My outlook upon life changed and am still learning how to be present "today" and grateful often. Fortunately, the cancer I had was stage I and Type B, it was 25% through the wall of my uterus. I did not need chemo or radiation. I am grateful so grateful. I wish the best outcome for you, do not let fear run your mind and have self compassion for what you are feeling. Talk about it with whoever you trust. Best wishes, FC

sbryant | @sbryant | Mar 18 8:15pm

In reply to @naturegirl5 "@sbryant Yes, this is a frightening. Although the oncologist will have a copy of your pathology..." + (show)

I do have a spouse I’m just not feeling all that supported. I totally regret searching on the internet

sbryant | @sbryant | Mar 18 8:20pm

In reply to @flaviacwood "Hello Shelly, I was diagnosed with EC in 2023 and had surgery in 2024. I was..." + (show)

Thank you so much for your response! ❤️hugs

melhen | @melhen | Mar 19 7:14am

I too was diagnosed with EC March 2023, Stage 1 grade 1, had surgery April 2023, quick, smooth recovery, no additional treatment, have to follow up every 6 mos til June 2025. As to date no more issues and I pray it stays that way. Knowledge is good but too much researching online OR different opinions from others is frightening.

sbryant | @sbryant | Mar 19 7:58am

In reply to @melhen "I too was diagnosed with EC March 2023, Stage 1 grade 1, had surgery April 2023,..." + (show)

Thank you for your feedback. I wish I had stayed off of the internet. I was so scared with just the hysteroscopy and DNC and was relieved when I t was over only to have it be cancer. Now I’m afraid to even think.