Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

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.

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.

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:

Blessings. Please come back here and let me know what you find out. I'll be thinking about you.

Helen

Thinking of you, Rose. How was your appointment yesterday (Monday)?

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

Hello, again, Andrea, @andrea69

Thank you for responding so quickly to my posting. I am so very relieved to know that you have a referral in place to GYN/ONC and that you will continue to advocate for yourself by calling their office if they didn't get back to you in a timely manner.

How wonderful that you are so mindful about your weight loss. Since you've already done so well it does show that you are very serious about this. As you continue to be followed for the endometrial cancer diagnosis you will be showing the physicians that you do intend to reduce your risk and are getting yourself ready for surgery.

It's good that your husband was present as the doctor explained the findings from the hysteroscopy and he can continue to reassure you. That "extra pair of ears" is so important. I was fortunate like you that my husband was present at all of my appointments and took notes for me.

Yes, will you please come back here and keep me/us informed? Thank goodness for the UW-Madison nurse who informed you of Mayo Clinic Connect. I'm very happy you found us.

I'm wishing you many blessings and healing prayers,

Helen

Drove over 5 hours to Birmingham at 5 in the morning. I drove to keep my mind busy. I talked to the Doctor who will be doing my surgery. I asked some of the questions ypu suggested and all that you outlined pretty much is what he told me. I do want to talk to another doctor and this is where Mayo comes in. Friday I will drive to Jacksonville for this appointment. I went to Birmingham because I live in Alabama and that's where I was referred
to go. However, I'm leaving towards going to Mayo.

Did you receive my reply on my visit Monday Nature girl?

Hello, Rose53,
I somehow missed your message. From what you wrote the surgeon you talked to told you the information you mostly wanted. You already have an appointment at Mayo in Jacksonville on Friday. Excellent as you'll get another opinion, can compare, and decide what you want to do,

I know in your original post you wrote that you are frightened. When I am frightened, the fear feels like intense anxiety. I notice that the fear and anxiety comes in waves. I'll feel better for a little while and then the fear/anxiety comes back. When I do something that will help the situation as you did like driving for 5 hours to see the doctor in Birmingham followed by the next appointment at Mayo, it means to me that you are taking good care of yourself by doing something active. The unknown is so scary. I'm hoping that once you decide where you will go for treatment and which doctor you will work with that you might feel a little less frightened because you have a plan in place.

Please let me/us know how the appointment at Mayo in Jacksonville goes.

Blessings to you,

Helen

Hello,
I have recently been diagnosed with uterine cancer; Adenocarcinoma. I was very freightened to first hear it from my doctor. I cried everyday, couldn't eat, couldn't think but the worst that could happen to me. After a few days, I was able to face the fact that I had cancer. Three weeks ago today I finally got what I needed to do to get my treatment and the first and foremost I need done is surgery. I am scheduled for Nov. 17. My anxiety is still up there because of the unknown . I wanted to share this because it is normal to go through this emotional roller coaster. I find that praying to GOD
about my concerns helps me tremendously.

Hi Rose, it sounds like you now have an outline of your treatment plan and surgery is the very first step. That's a good step forward and onward to recovery.

You'll notice that I moved your message to the Gynecological Cancers group https://connect.mayoclinic.org/group/gynecologic-cancer/ to the discussion where you connected with @ejohn and @naturegirl5. I did this so that they get your update and continue to support you.

You're so right that it is normal to experience an emotional roller coaster. In fact @hopeful33250 started a discussion by that title here:
- The Roller Coaster Ride of Cancer https://connect.mayoclinic.org/discussion/the-roller-coaster-ride-of-cancer/

Rose, While fear of the unknown remains, do you feel more oriented with a plan of action? What questions do you have about your upcoming surgery?

Hello, @rose53. I'm happy that your message was moved to the Gynecological Cancer group as I've been thinking about you.

Your surgery is scheduled for November 17 which is next week. Will you be having surgery at Mayo in Jacksonville or returning to Birmingham? Has your anxiety come down a little now that you have a plan in place? It's that fear of the unknown that really gets me every time.

When my doctor first told me about the endometrial adenocarcinoma diagnosis I was shocked too. I spent days feeling very anxious and scared. My doctor asked me where I would like to be referred because they don't treat gynecological cancers where I live and I chose Mayo Clinic. Once that appointment was made I began to feel a little better. And then when I had my first consult with the surgeon and we set the surgery date I knew each of these steps would lead to the emotional roller coaster becoming more level.

May you experience healing, physically and emotionally, through your prayers.

Helen