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
Good morning Helen,
Thank you so much for your reply. I spoke with a physician yesterday, who is filling in for my doctor who is currently on vacation. She told me that she had already sent a referral to the GYN/ONC department, so hopefully I will be speaking with them soon. I do have a copy of the pathology report, and it is indeed quite confusing in spots - especially the marker terminology, so I will def. have questions about the terminology.
I wish I could have children, but they told me I was walking a fine line between being menopausal and post-menopausal. One of the biggest risk factors I have right now is obesity. I have been told that I am indeed a candidate for robotic/laparoscopic surgery, but it seems whenever I breach the subject, they shy away from it. I am going to strongly press for it now. I am conscientiously dieting and have lost a fair amount of weight, and my goal is to lose at least 10-20% of my overall weight. Hopefully they will see that as an indication I am serious about getting this surgery and that I am doing everything I can on my end to get this excess weight off.
I will give the GYN/ONC today to get back to me. If I don't hear from them, I will give them a call tomorrow. I keep reminding myself that my doctor did tell my husband that "she got it all", and that the muscle underneath the concerning area was clean, pink and without discoloration or erosion. It did sound positive, so I am hoping that is an indication of everything as a whole.
Many, many thanks and blessings to you. I will report back when I have some more info.
Andrea