Just diagnosed - endometrial endometrioid adenocarcinoma

@tcy941
I’m so sorry. You’re in the right place - it’s a wonderful, informative, and supportive community. Sadly, my cancer was not gynecological so I cannot be of much help to you. But give it a hot minute and one of our stellar mentors will see this, or one of patients like yourself who may have walked the same path.
In the meantime, I’m sending good juju your way!!

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@tcy941 This is frightening news and not at all what you likely expected to hear. It certain wasn't for me. My gynecologist called me after he read the results of my biopsy from pathology (I had a D&C) and then I invited me to come straight to his office. Endometroid adenocarcinoma, FIGO Grade 1. We talked about the results and he asked me where I would like to go for treatment since I live in a rural area and there are no treatment options here. I chose Mayo Clinic in Rochester where I was already a patient in orthopedics. On my way home from that talk with my gynecologist I was so stunned that I made a wrong turn and wound up in a neighborhood I'd never been in before. I found my way out but realized then how rattled I was. Unfortunately this was a Friday afternoon so I had to spend the weekend with this diagnosis before the plans were in place to go to Mayo Clinic. It was terrible weekend, I didn't sleep well, and every time I woke up all I could think about "cancer".

There are several of us here in this Support Group who have been diagnosed and successfully treated for endometrial cancer. I'm quite certain that others will come here with their support and thoughts for you.

In the meantime, may I suggest that you do not troll the internet with Google? You'll turn up all sorts of wacky information that isn't accurate and has the potential to make you feel very anxious. If you decide to read on the internet and would like information, I'd like to suggest that you stick to valid and reliable sites such as Mayo Clinic, Cleveland Clinic, MD Anderson, Memorial Sloan Kettering Cancer Centers or the National Cancer Society. I can provide you with links if you like.

When did you receive the diagnosis? How are you feeling today? Did you discuss a treatment plan with your gynecologist/provider?

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@tcy941 It’s a long wait when you’re diagnosed with cancer. Can you call the oncologist’s office and see if you can move the appointment up in time? You can also ask for be put on an “on call” list in case there is a cancellation. You could also call or write your gynecologist and ask them to try and move the appointment closer in time.

I writing this to encourage you to be an advocate for yourself. I, for one, know how difficult this is and I have to force myself to do it. But I do. I’m very polite but assertive and sometimes I get people on the phone who aren’t particularly nice to me. That happened to me the other day and I just decided to push on anyway and get the information I wanted. I knew the practice manager I talked with was annoyed with me but I tried not to take it personally (it was hard) and not allow her to discouraging me from getting the information I needed.

As you wait for your appointment what do you do to take care of yourself? Go for walks? I like nature walks and when I walk outside and take a deep breath I find it all so calming. Do you have support at home from your partner or spouse? Friends? Pets?

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Got diagnosed April 1. I don’t have my oncologist consultation till the end of the month and I am really struggling with the wait.

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Hello TCY,

One thing you can do right now is to make sure that all is in place regarding your imaging tests and get prepared for your visit with quesitons and put together a binder to organize the care that is coming.

Start a 3-ring binder and obtain copies of your diagnosis reports, medical and lab reports, especially obtain disks from where you were imaged (obtained at Medical records for a small cost). Use folder tabs to organize your care in a 3-ring binder for: Diagnostic/Pathology, Labs, Resources, Finances, Treatment options, pamphlets etc. and a zip-up pencil holder that fits into your binder to collect medical recipts and a separate one for disks of your imaging results and healthcare business cards you obtain. This may help your wait and you'll be prepared when things start speeding up and you don't feel so well. You'll need a place to keep these items to simplify your life. Also, do not rely on communications b/w providers. Be your own adovcate and direct the sharing of information and follow up to make sure it's done. I work in healthcare and this is a vital tip.

Hand carry in your imaging results that you get from medical records to your oncology consult. Call the provider office also and the imaging center and see what type of electronic sharing software they use.

For example, my imaging company shares information with Mayo in Florida using "Power Share". I was able to request that my biopsy be done during the initial consult visit because we lived so far away to save time by using this tool. You need to completema "Release of Health Information" form to share information between providers. This is why it's good to have a disk also to carry in also in case it's not shared for some reason and falls through the cracks.

I was diagnosed March 8th with an agressive endometrial adenocarinoma from that expedited biopsy. It's a high grade cancer and my surgery is scheduled for April 11th after all of the preliminary appointments. Try to get as many appointments scheduled in one day, spaced apart to speed up the process.

You need to see a Social Worker to help you with life aspects of care too, Financial Counselor. Now is a good time to research online also what other types of treatment are available so you can discuss this with your doctor. Do you need genetics counseling, would you benefit from immunotherapy and it may be too soon to tell until a biopsy/surgery take place, if needed.

This is a good time for you to get some important things in place.

I wish you well in your journey. We are walking together and you are not alone here. JC

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Hello TCY,

One thing you can do right now is to make sure that all is in place regarding your imaging tests and get prepared for your visit with quesitons and put together a binder to organize the care that is coming.

Start a 3-ring binder and obtain copies of your diagnosis reports, medical and lab reports, especially obtain disks from where you were imaged (obtained at Medical records for a small cost). Use folder tabs to organize your care in a 3-ring binder for: Diagnostic/Pathology, Labs, Resources, Finances, Treatment options, pamphlets etc. and a zip-up pencil holder that fits into your binder to collect medical recipts and a separate one for disks of your imaging results and healthcare business cards you obtain. This may help your wait and you'll be prepared when things start speeding up and you don't feel so well. You'll need a place to keep these items to simplify your life. Also, do not rely on communications b/w providers. Be your own adovcate and direct the sharing of information and follow up to make sure it's done. I work in healthcare and this is a vital tip.

Hand carry in your imaging results that you get from medical records to your oncology consult. Call the provider office also and the imaging center and see what type of electronic sharing software they use.

For example, my imaging company shares information with Mayo in Florida using "Power Share". I was able to request that my biopsy be done during the initial consult visit because we lived so far away to save time by using this tool. You need to completema "Release of Health Information" form to share information between providers. This is why it's good to have a disk also to carry in also in case it's not shared for some reason and falls through the cracks.

I was diagnosed March 8th with an agressive endometrial adenocarinoma from that expedited biopsy. It's a high grade cancer and my surgery is scheduled for April 11th after all of the preliminary appointments. Try to get as many appointments scheduled in one day, spaced apart to speed up the process.

You need to see a Social Worker to help you with life aspects of care too, Financial Counselor. Now is a good time to research online also what other types of treatment are available so you can discuss this with your doctor. Do you need genetics counseling, would you benefit from immunotherapy and it may be too soon to tell until a biopsy/surgery take place, if needed.

This is a good time for you to get some important things in place.

I wish you well in your journey. We are walking together and you are not alone here. JC

Jump to this post

Hello TCY,

One thing you can do right now is to make sure that all is in place regarding your imaging tests and get prepared for your visit with quesitons and put together a binder to organize the care that is coming.

Start a 3-ring binder and obtain copies of your diagnosis reports, medical and lab reports, especially obtain disks from where you were imaged (obtained at Medical records for a small cost). Use folder tabs to organize your care in a 3-ring binder for: Diagnostic/Pathology, Labs, Resources, Finances, Treatment options, pamphlets etc. and a zip-up pencil holder that fits into your binder to collect medical recipts and a separate one for disks of your imaging results and healthcare business cards you obtain. This may help your wait and you'll be prepared when things start speeding up and you don't feel so well. You'll need a place to keep these items to simplify your life. Also, do not rely on communications b/w providers. Be your own adovcate and direct the sharing of information and follow up to make sure it's done. I work in healthcare and this is a vital tip.

Hand carry in your imaging results that you get from medical records to your oncology consult. Call the provider office also and the imaging center and see what type of electronic sharing software they use.

For example, my imaging company shares information with Mayo in Florida using "Power Share". I was able to request that my biopsy be done during the initial consult visit because we lived so far away to save time by using this tool. You need to completema "Release of Health Information" form to share information between providers. This is why it's good to have a disk also to carry in also in case it's not shared for some reason and falls through the cracks.

I was diagnosed March 8th with an agressive endometrial adenocarinoma from that expedited biopsy. It's a high grade cancer and my surgery is scheduled for April 11th after all of the preliminary appointments. Try to get as many appointments scheduled in one day, spaced apart to speed up the process.

You need to see a Social Worker to help you with life aspects of care too, Financial Counselor. Now is a good time to research online also what other types of treatment are available so you can discuss this with your doctor. Do you need genetics counseling, would you benefit from immunotherapy and it may be too soon to tell until a biopsy/surgery take place, if needed.

This is a good time for you to get some important things in place.

I wish you well in your journey. We are walking together and you are not alone here. JC

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