The beginning process of diagnosing endometrial cancer

Posted by tishie58 @tishie58, Jun 27 7:21pm

Hi, I have had a positive UTI 5 times in 6 months. Along with increasing discomfort in my lower pelvis and lower back. It feels like my insides want to fall out. I had a CT scan and it said, suspicious for endometrial neoplasm. I am waiting for upcoming urgent GYN consult.
I'm so scared. Age 66. Anyone experience this and where are you in the process now. Thank you so much for responding.

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

@tishie58

Hi Helen,
How are you? I hot the results of the transvaginal ultrasound.
1: Uterine solitary fibroid 2 cm.
2: Endometrial lining markedly
thickened 2.4 cm concerning gor carcinoma, with increased blood flow. Hysteroscopy recommended.
3: No adnexal masses with ovaries visually obscured.
Still haven't heard back regarding result. I work for my primary doctors office. The radiology place sent report directly to me in a text message. Thank God I did have professionals to go to about this. I was literally shaking.
My own doctor and gyn doctor have not called me. My own doctor works in our off campus office. I have not even met the gyn doctor. I am sooo nervous.
Anyway thank you in advance for reading this. Trish

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@tishie58 :
Please consider reaching out to another doc to get to the bottom of this report. You should not be left hanging, waiting for the other shoe to drop, meanwhile anxiety and fear are mounting. If you have reason to be concerned then treatment in short order should be taken —perhaps elsewhere!!

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@tishie58

Hi Helen,
How are you? I hot the results of the transvaginal ultrasound.
1: Uterine solitary fibroid 2 cm.
2: Endometrial lining markedly
thickened 2.4 cm concerning gor carcinoma, with increased blood flow. Hysteroscopy recommended.
3: No adnexal masses with ovaries visually obscured.
Still haven't heard back regarding result. I work for my primary doctors office. The radiology place sent report directly to me in a text message. Thank God I did have professionals to go to about this. I was literally shaking.
My own doctor and gyn doctor have not called me. My own doctor works in our off campus office. I have not even met the gyn doctor. I am sooo nervous.
Anyway thank you in advance for reading this. Trish

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@tishie58 I know how stressful and alarming it is to see results before you have talked with the doctor. In my case, I also had to "sit" with the results over the weekend and it was really difficult. I kept imagining the worst case scenario however I also reminded myself that I would be taken care of by my medical team.

Since you work in your primary care doctor's office hopefully the doctor will be back on Monday and you can discuss these results. With the thickened endometrial lining the radiologist's report includes the words "concerning for carcinoma" because that's a possibility. I've also been told (by my husband who is a pathologist) that these words are meant to get the referring physician's attention to move to the next steps which would include hysteroscopy and to take a biopsy at that time.

What are you doing this weekend to take care of yourself? Do you have any practices that you enjoy and are helpful like meditation, yoga, exercise?

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@naturegirl5

@tishie58 I know how stressful and alarming it is to see results before you have talked with the doctor. In my case, I also had to "sit" with the results over the weekend and it was really difficult. I kept imagining the worst case scenario however I also reminded myself that I would be taken care of by my medical team.

Since you work in your primary care doctor's office hopefully the doctor will be back on Monday and you can discuss these results. With the thickened endometrial lining the radiologist's report includes the words "concerning for carcinoma" because that's a possibility. I've also been told (by my husband who is a pathologist) that these words are meant to get the referring physician's attention to move to the next steps which would include hysteroscopy and to take a biopsy at that time.

What are you doing this weekend to take care of yourself? Do you have any practices that you enjoy and are helpful like meditation, yoga, exercise?

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Thank you Helen! It's getting harder with each step. I tend to freeze. Like right now. I want to say more but the words aren't coming. For now I can just acknowledge your kindness and thank your husband for his expertise. Very helpful. Trish

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@tishie58

Thank you Helen! It's getting harder with each step. I tend to freeze. Like right now. I want to say more but the words aren't coming. For now I can just acknowledge your kindness and thank your husband for his expertise. Very helpful. Trish

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@tishie58 No additional words are needed here. Your fear, worry, and stress levels are high and so for now just take care of you.

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It’s appalling that you haven’t heard from the ordering physician about these results. Life-altering abnormal test results should be communicated immediately. Less serious abnormal results should be communicated within one day. (Normal test results can sometimes be life-altering, too, and they also should be communicated immediately.) Most doctors today just don’t care anymore.

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@naturegirl5

@tishie58 No additional words are needed here. Your fear, worry, and stress levels are high and so for now just take care of you.

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Hi Helen,
Hope all is well with you.
I go for the biopsy tomorrow.
I get very panicked at times.
I realize once the path report comes back I can never not hear what I think will be bad news ever again. I also feel and get traumatized by procedures done to certain parts of my body. Now it's the night before and I know what to do to get my mind off it. Only now I'm sitting here frozen in fear. Thank you for letting me share this, I appreciate you. Thank God for the women on this forum. Trish

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Hi Tishie58;
I just got an endometrial biopsy on July 2 myself. I'm 66. I had no symptoms, just an abnormal pap and sent for colposcopy and biopsy. The test came back positive for endometrial cancer. I couldn't stand the suspense and looked on the hospital patient portal for answers so I knew before the doctor called on the 8th, which was probably not the best thing to do. I've been researching like crazy. I can barely think of anything else.

I'm now waiting for the 18th to know what is the next step...it is an appointment with a gyne oncologist. Hopefully, just taking out the uterus will fix things, but I'm worried. Sharing the journey with you Tishie. Hopefully your biopsy will be negative. The procedure isn't too bad. I had some cramping afterwards, but nothing as bad as period cramps.
Terry9297

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@terry9297 Hello, and welcome to Mayo Clinic Connect. Our Gynecological Cancers Support group is here for you.

Your appointment with the GynOncologist is coming up next week which is soon although probably not soon enough for you. I know the feeling of wanting everything to move along quickly and get the consult so you know what treatment plans are recommended.

When you read the pathology report or talked with your doctor did you learn what type of endometrial cancer was diagnosed? And the Grade? (Not the Stage as that won’t be diagnosed until later). I’m asking only because you might like to read up on the kind of endometrial cancer and grade that is in your pathology report. That way you can be prepared with questions for the GynOncologist.

I was diagnosed with endometrioid adenocarcinoma, Grade 1 in 2019. I saw a GynOncologist who performed a laparoscopic hysterectomy and also removed ovaries, fallopian tubes, and cervix. It’s major surgery but I recovered more quickly then I might have thought I would. I was 67 years old when I was diagnosed. After the surgery the diagnosis was endometrioid adenocarcinoma, Grade 1, Stage 1a.

Here are some reliable websites where you can learn more about endometrial cancer.

Mayo Clinic: Endometrial Cancer:

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

American Cancer Society: What is Endometrial cancer?

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

Will you come back here and let me know what you learn at your appointment on July 18th?

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@tishie58

Hi Helen,
Hope all is well with you.
I go for the biopsy tomorrow.
I get very panicked at times.
I realize once the path report comes back I can never not hear what I think will be bad news ever again. I also feel and get traumatized by procedures done to certain parts of my body. Now it's the night before and I know what to do to get my mind off it. Only now I'm sitting here frozen in fear. Thank you for letting me share this, I appreciate you. Thank God for the women on this forum. Trish

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Hello, Trish, The fear is there and I’m thinking perhaps the panic comes and goes? That’s how it works for me. And yes, once you see the path report and/or talk with the doctor you cannot « unhear » the news again. That’s good way of characterizing it all.

It’s difficult to trust a medical provider that you don’t know with touching your body much less doing a procedure. Do you ever tell the provider or perhaps the nurse who is getting you ready that you feel this way? I wish that more medical providers understood what trauma-informed care means.

You wrote that you know what to do for yourself. Does this include going for a walk? I know for myself that if I’m feeling really anxious and fearful I need to move. When I move and it could be walking up and down stairs in my house or going outside for a walk that the anxiety will lessen.

What time is your appointment tomorrow? I’d like to send healing energy to you and for you to feel that I and the other women here on this site are there for you.

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@naturegirl5

Hello, Trish, The fear is there and I’m thinking perhaps the panic comes and goes? That’s how it works for me. And yes, once you see the path report and/or talk with the doctor you cannot « unhear » the news again. That’s good way of characterizing it all.

It’s difficult to trust a medical provider that you don’t know with touching your body much less doing a procedure. Do you ever tell the provider or perhaps the nurse who is getting you ready that you feel this way? I wish that more medical providers understood what trauma-informed care means.

You wrote that you know what to do for yourself. Does this include going for a walk? I know for myself that if I’m feeling really anxious and fearful I need to move. When I move and it could be walking up and down stairs in my house or going outside for a walk that the anxiety will lessen.

What time is your appointment tomorrow? I’d like to send healing energy to you and for you to feel that I and the other women here on this site are there for you.

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Thank you for understanding Helen. Yes everything is as you say. I will tell the doctor or nurse, maybe even write a quick note with a few main points of the situation so I don't have to talk of it tomorrow. I'm soon going to get up and get stuff done around my apartment. My appointment is at 12:15.

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