Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

Posted by rose53 @rose53, Oct 21, 2021

I was just diagnosed with this uterine cancer. I am 68 and I'm so freightened. Waiting to see doctor for hysteroctomy. This is all I know. I had a biopsy done and this is the result. Anyone please let me know what ro expect and do before hand and any suggestions are embraced. ❤

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@springangel

Yes and in the last 2 years I have done that with no progress. I first went to ucr women's health, then Loma loinfa and lastly the city of hope which was a disaster. The important thing here is NOBE of those places did any tests of ANY kind!! After two years don't ya think a blood test, CT scan of my pelvis and chest and another biopsy to just be sure of where my cancer is at this point? I'm so unhappy and disgusted at the lack of care these places DONT HAVE for me and my situation! 2 years is a long time to go without any any any treatment! Sorry for ranting but I'm fighting for my life, in my mind anywYs

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Springangel, might Mayo Clinic in Phoenix, AZ or Rochester, MN be an option for you to consider?

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@springangel

Hi, 56 years old, white female, obese, diagnosed with endometrial adenocarcinoma Figo 1 with spots on squamous modular metaplasia. Been bounced around to different doctors trying to get that hysterectomy they said I needed the day I was diagnosed. Well with the pandemic , my own mental health issues , fear of the unknown and not finding one doctor that will advocate for me and make me feel important and cared for....it's been 2 years with no treatment, no surgery, NOTHING!!! I am a mix of passed off and soon scared from all the time that's passed without any care...I even had a doctor tell me that he didn't want to work with me because I missed appointments with the other doctors so he wasn't going to waste his time. Why am I being rejected by a doctor who took an oath to care for patients especially since it has been 2 years? Anyone got any suggestions ? I just feel like I'm not important enough for anybody to care. I've even contemplated suicide a few times. Help please...thanks

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@springangel ,
Hello and welcome!

I am fairly new to this page also. I had surgery in February of this year. I will tell you I have found the most wonderful support here.

I am so sorry to hear about what you are going through. I highly recommend that you make an appointment with another gynecologist this week. Please share your concerns and fears with them. I have always been a pretty private person and downplayed my symptoms and I have found that when your health is at stake you must advocate for yourself.

Please know I care and wish you all the best.

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@springangel

Yes and in the last 2 years I have done that with no progress. I first went to ucr women's health, then Loma loinfa and lastly the city of hope which was a disaster. The important thing here is NOBE of those places did any tests of ANY kind!! After two years don't ya think a blood test, CT scan of my pelvis and chest and another biopsy to just be sure of where my cancer is at this point? I'm so unhappy and disgusted at the lack of care these places DONT HAVE for me and my situation! 2 years is a long time to go without any any any treatment! Sorry for ranting but I'm fighting for my life, in my mind anywYs

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Hello,
Just read your post. I am just very upset for you. You are absolutely right. CT scan, blood test, all that should have been first and foremost. Their lack of doing all that immediately puzzles me. Does it have to do with insurance? Please keep checking to other hospitals until they can give you a Plan! Mine was total hystectomy..I even knew that would have to happen and they can go in there and see what all is going on..You have to be persistent...even if you need to drive a long way like I did to Mayo for 5 hours..so be vigilant..hope all works out for you soon.
Rosemarie rose53

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@naturegirl5

@cmb2022 We leave for Mayo Clinic tomorrow. It's a long drive but we have done it so many times that we have our favorite places to stop. This time of year I like to stop in Necedah, WI where there is a a national wildlife refuge. Since we into Spring bird migration I'll walk a few trails and go up a tower to see what's out on the water. In 2020 I saw Whooping cranes! They migrate with Sandhill cranes and I did more than one double take before I realized I was looking at Whooping cranes. That was a first for me.

We had temperatures today in the 70's and it really felt like Spring. I poked around in my garden bed and found the crocus and hyacinth that will be in bloom within the next week. I find "working" in the yard to be meditative and satisfying. Do you feel like that on your two acres?

I'm often fatigued too. I wonder if it's still from the radiation therapy, cancer, or getting older. Or all of these. It seems like not all that long ago I could stay out in my yard all day and do gardening chores but not anymore. I have decided though that I'm done with raking leaves. Our house is in the woods so no one sees our yard anyway and I don't need a pristine setting. I figure the bugs, birds, and other wildlife will continue to enjoy those damp leaves on the lawn.

I hope you have a good week, my friend.

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@naturegirl5 ,
I just wanted to tell you that you have been on my mind and in my prayers. I hope your appointment is going well and that good news is surrounding you.

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@cmb2022

@naturegirl5 ,
I just wanted to tell you that you have been on my mind and in my prayers. I hope your appointment is going well and that good news is surrounding you.

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@cmb2022
Oh, thank you so much. Your healing prayers have sure worked. I’m finished with my appointments and there was all good news. The CT scan was negative although there is a 1 cm nodule on my thyroid they are watching. It was present on the PET/MR I had in November, 2021 and there has been no change. The physical exam revealed nothing new and I’m healing well. Apparently many people have ongoing side effects from radiation therapy and fortunately I am not. So I feel very encouraged and ready to face forward. My next check up will be in 4 months. I’ll be on that 4 month schedule for two years.

I’ve been thinking about you too. How are you feeling and how is your week going.? I’m wishing you sunny Spring weather with time outside on your property in the longer daylight hours.

Blessings to you, my friend.

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@springangel

And , BTW, thank you for responding so quickly . I didn't think anyone would reply. Thanks for the kind words.

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@springangel

You are hearing back from the best virtual support group. Everyone who has responded has been frightened just like you and been confused about where to turn next. I was in shock when I first got my diagnosis of endometriod adénocarcinoma. I made one wrong turn on my way home from the gynecologist's off ice on my way home and would up on streets I’d never been on before. Honestly it was a surreal experience.

Who are your local supports? Do you have family and/or friends that can help advocate for you? Do you have a pet army care physician who will make a referral for another opinion?

I know what it feels like to be filled with worry. We are here for you so let’s imagine we are all seated around a table to help support you and help you figure this out together.

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@naturegirl5

@cmb2022
Oh, thank you so much. Your healing prayers have sure worked. I’m finished with my appointments and there was all good news. The CT scan was negative although there is a 1 cm nodule on my thyroid they are watching. It was present on the PET/MR I had in November, 2021 and there has been no change. The physical exam revealed nothing new and I’m healing well. Apparently many people have ongoing side effects from radiation therapy and fortunately I am not. So I feel very encouraged and ready to face forward. My next check up will be in 4 months. I’ll be on that 4 month schedule for two years.

I’ve been thinking about you too. How are you feeling and how is your week going.? I’m wishing you sunny Spring weather with time outside on your property in the longer daylight hours.

Blessings to you, my friend.

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Oh @naturegirl5 ,
Thank you so much for the update!
I have happy tears in my eyes as I am writing. I have found myself thinking about you so many times over the past few days.
Every 4 months is wonderful.
Thank you! I am doing well. It has been pretty chilly here today and I believe tomorrow too and the wind is fierce. I will be so glad when the weather turns warmer again (and stays that way).
Thank you so much for the wonderful update my friend!
Have a great remainder of the week.

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@naturegirl5

@springangel

You are hearing back from the best virtual support group. Everyone who has responded has been frightened just like you and been confused about where to turn next. I was in shock when I first got my diagnosis of endometriod adénocarcinoma. I made one wrong turn on my way home from the gynecologist's off ice on my way home and would up on streets I’d never been on before. Honestly it was a surreal experience.

Who are your local supports? Do you have family and/or friends that can help advocate for you? Do you have a pet army care physician who will make a referral for another opinion?

I know what it feels like to be filled with worry. We are here for you so let’s imagine we are all seated around a table to help support you and help you figure this out together.

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I'm pretty much alone dealing with this for 2 years. I have made some horrible mistakes along the way because I have mental disabilities that leave me stuck and angry and my mouth got me banned from one organization! I don't know where to turn because that incident will follow me no matter where I go now! I'm in California and have been rejected by the top 3 medical centers. I need help really bad. I have been feeling so sick and it's getting worse every day! I wish a doctor would take me in and try to understand my mental instabilities and give me a break. I'm willing to do anything to get help.

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@rose53

Hello,
Just read your post. I am just very upset for you. You are absolutely right. CT scan, blood test, all that should have been first and foremost. Their lack of doing all that immediately puzzles me. Does it have to do with insurance? Please keep checking to other hospitals until they can give you a Plan! Mine was total hystectomy..I even knew that would have to happen and they can go in there and see what all is going on..You have to be persistent...even if you need to drive a long way like I did to Mayo for 5 hours..so be vigilant..hope all works out for you soon.
Rosemarie rose53

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Thank you for your response. And for getting it! I am on medi-cal/INLAND HEALTH CARE PLAN OF. IFORNIA. I don't think mayo takes medi-cal , do they? I'm just so upset that my mouth gets me in trouble when I start standing up for myself. As I write this I'm in tears knowing these 2 years that have been wasted are going to help end my life early.

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@colleenyoung

Springangel, might Mayo Clinic in Phoenix, AZ or Rochester, MN be an option for you to consider?

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I don't know if they could help me. What kind of insurance do they accept on an emergency basis with a referral from my doctor? I don't think I can wait much longer. Please let me know how they could help please and thank you

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