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Just diagnosed with Endometrioid Adenocarcinoma: What to expect?
Gynecologic Cancers | Last Active: Dec 12, 2022 | Replies (239)Comment receiving replies
Hello everyone. I live in Central Wisconsin, and was referred to your page by a lovely nurse at UW Madison, where I had a hysteroscopy done last week, along with a polypectomy and a IUD placement. Long story short, I have a FIGO Grade 1 carcinoma. I 50 years old, and have been bleeding on and off since last December. It's taken me this long to get the help I needed, as the prior doctors I went through literally ping-ponged me around.
During the procedure, my doctor found a polyp about the size of a grape that was discolored, and she said that it was a 50/50 chance of it being malignant. She went on to say that if it was the bad part of the "50/50", that the IUD was in place and would help to eliminate the endometrial lining and quite possible reverse the disease. My husband asked her if she got everything out, and she did confirm that she did.
I have been asking for a hysterectomy for some time. I have some very considerable risks, but I don't want to play the "what if" game, and have this possibly come back at a later stage.
I guess I have two questions. The first being - is the FIGO Grade the same as a Stage indicator, and do the IUDs really reverse this disease? I have a Liletta IUD.
I am so incredibly frightened and lost right now with so many questions I don't know which way to turn.
Thank you so much for your help. Blessings to all.
Replies to "Hello everyone. I live in Central Wisconsin, and was referred to your page by a lovely..."
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Hello, @andrea69
We aren't medical professionals here at Mayo Clinic Connect so we cannot provide you with medical recommendations. We do provide support and can help you search for the resources you need and formulate questions to ask.
I do understand how frightened and confused you are right now. I've felt the same and it's frightening to navigate your way through the medical jargon and the system.
You stated that you were diagnosed with FIGO Grade 1 carcinoma. Was this information provided to you after the hysteroscopy and D&C? If yes, I'm wondering why you weren't referred to a cancer specialist. Do you receive your care at UW Madison? If yes, then I would insist on a referral to gynecologic oncology at the cancer center at UW. You are in an area where there is comprehensive cancer treatment and research in an academic environment. They will be up-to-date on the latest advances.
FIGO Grade 1 refers to cancer cells that are well-differentiated and very small growth of tumor (less than 5%). Your doctor who performed the hysteroscopy removed tissue that was sent to pathology and the pathologist then provided the diagnosis of FIGO Grade 1. There should also be information about the kind of cancer. Do you have a copy of the pathology report? If not, please ask for your own copy and then ask your doctor to explain what everything means in the pathology report.
FIGO Grade is different than stage. The FIGO grade helps the team of physicians to decide on the best treatment forward after initial diagnosis. FIGO Grade 1 means that the cancer is early stage. Additional biopsy which might include surgery will stage the cancer to determine if it has spread. Here is an explanation from the American Cancer Society that I have found helpful.
https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/staging.html
After doing some research I learned that information hormonal IUDs are placed for early endometrial cancer. The IUD you mention (Liletta IUD) is in that category. Your IUD is often placed where there is low grade endometrial cancer such as FIGO Grade 1 and is a nonsurgical approach. Here is an article that is very technical but discusses the research on the type of hormone that is in your IUD and its use in treating low grade endometrial cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739955/
I would like to encourage you to really advocate for yourself. Your post again makes me wonder why you weren't referred immediately to the cancer center to discuss all the options available. Are you planning to have children? Are there other reasons your doctor is advising against a hysterectomy? You mention that you have some other risks factors If that is something you want to know more about so you can weigh out what you want to do then please ask for that referral and be tenacious and persistent about it. We are the best advocates for ourselves.
Since you are in Wisconsin you are close to Mayo Clinic in Rochester. If you'd like to explore whether Mayo Clinic can provide a second opinion, here is the link:
http://mayocl.in/1mtmR63
Blessings. Please come back here and let me know what you find out. I'll be thinking about you.
Helen