Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

Hello Rose53, I am sorry to hear this but know you are supported. The hardest part is waiting to see the doctor and surgery. After all of that they will have a clear picture on where it is and what if any other treatment you will need. Try not to read too much online because it gets overwhelming. And each person is unique. Sending good energy and positivity your way. Eileen

@rose53 I’m so glad you found this group. And @ejohn has already responded to help you. Here is a link to a discussion and online course that may help you manage any stress and anxiety you may have.

There are also many discussions in the gynecological cancer group that you may want to read.

Hello, Rose53, Welcome to Mayo Clinic Connect. You are in the right place for support and guidance. While we are not medical professionals we can share our own experiences and support you through yours. It happens that I was in your exact place just two years ago.

I was 67-years-old when I was diagnosed with endometrial cancer in 2019. I had symptoms of vaginal bleeding and then abdominal cramping that felt like the worst menstrual cramps. I knew something was wrong as I entered menopause over ten years before. So, I went to my gynecologist and eventually had a biopsy. I ( was diagnosed with Endometrioid Adenocarcinoma FIGO Grade 1. I was referred to Mayo Clinic (Rochester) and I was very frightened.

Do you know your FIGO Grade? The FIGO Grade is assigned by the pathologist who examined your slides from your biopsy. The FIGO score will help the doctors to collaborate and plan the best treatment for you. I know how difficult it is not knowing what is happening in your body and whatever the cancer is you want it out as soon as possible. That's how I felt. The surgeon told me that I would not know if I would need additional treatment (radiation, medication, chemotherapy) until after the hysterectomy when all of the tissue would be be examined by pathology. Where are you located? Did your doctor refer you to a cancer center where you can receive collaborative care?

Five days after that initial consult with the surgeon I had a hysterectomy with removal of ovaries, fallopian tubes and cervix. The endometrioid adenocarcinoma was staged 1a indicating minimal invasion of the uterine tissue and no spread to lymph nodes. After I had the hysterectomy the surgeon let me know her initial impressions and what the initial pathology report indicated. Then she said that I would get the final results of the pathology in a few days. With Stage 1a no other treatment was recommended. Of course waiting was hard. I then returned to the surgeon one month later where we went over my results together and she gave me a cancer survivorship plan.

I am writing this note to you from Mayo Clinic where I return every six months for 3 years for checks.

Please let me know what other questions you have and I will do my best to answer them. Here are some links to information that I hope you will find helpful in the meantime.

I will keep you in my prayers.

Helen

Thank you and your experience has given me a better perspective on what to expect. How did you do with total hysteroctomy?

Hello, Rose53,
I’m not sure how much detail you would like to know. If there is something I’ve left out or you’d like more information, please ask. I can tell from your posts that you are nervous and worried. And why wouldn’t you be? Please tell yourself that it’s normal to be worried about this diagnosis and surgery and please don’t try to talk yourself out of what you are feeling.

My hysterectomy was same-day surgery at Mayo Clinic in Rochester. I spent a few hours early in the morning in a hospital room with a very empathic and informative nurse who got me ready for surgery. Then, I was taken to the pre-surgical area where the anesthesiologist checked in with me and the IV was started. The nurse that started the IV asked me to drape my hand over my bed and then she crouched down to start the IV. That’s the first time I’d ever had that experience and she told me that gravity would help this process and it sure did. It was the most painless IV start I’d ever had. When the OR was ready for me the surgical fellow (surgeon doing a fellowship in gynecological oncology) wheeled me to the OR. And then the surgeon came into the room. She stood next to me, held my hand for a moment, and told me she was there. I’m almost in tears as I describe how calming this was and how much everyone I had contact with focused on me, the patient. And then I was asleep. The hysterectomy was robotic non-invasive with 5 very small abdominal incisions. I awakened in the same hospital room where I started the day. I was really uncomfortable when I awoke because the surgeon must introduce gas into the belly in order to visualize the surgery. That gas bloats the belly. The pain medications were somewhat helpful and I was told it was take some time for the gas to dissipate from the abdomen. Within 24 hours I believe the gas was gone because I felt better. We stayed in Rochester for an extra day and then made our way home stopping every hour or so (it’s a 9 hour drive for us) for me to get out of the car and move around as the surgeon recommended.

I had a whole list of things to do and not do including not driving for at least two weeks and not lifting anything heavier than two grocery bags. The first week I was fatigued which is normal after surgery especially when there is general anesthesia which I had. I didn’t have any pain after I returned home two days after surgery. The incisions were covered with small bandages and were self-healing sutures. I returned to Mayo Clinic 4 weeks later to see the surgeon again. By then I was back at work (I work part-time) and my energy was back to normal for me. Since internally I was still healing, the surgeon advised me that I continue to be careful about physical activity.

Initially I didn’t have a strong emotional reaction to the hysterectomy other than gratefulness. That’s when I started the “Noticing my blessings thread” here (https://connect.mayoclinic.org/discussion/noticing-my-blessings-every-day/) on Mayo Clinic Connect. But later I did have some psychological adjustments to make for myself and in my sexual life with my partner. I can share some of that in another post if you like.

Your appointment with your surgeon is tomorrow? I’d like to suggest the following. Be prepared ahead of time with your questions already written down. Take notes during your consult with the surgeon. And bring someone with you so that there are an extra pair of “ears”. Don’t’ go to the appointment by yourself if you can. This is an emotionally difficult time and the person who accompanies you can better recall when the surgeon says.

Please check back in and let me know what happens at your Monday appointment. Ask any questions here that occur to you and please know that I and the other Volunteer Mentors are here for you.

Blessings,
Helen

Hello again, Rose53,
I realize that you might wish to know how I did emotionally over time following the total hysterectomy. I received a referral for the Menopause and Women's Sexual Health Clinic from the nurse practitioner who I see every 6 months for my follow-up. I saw a psychologist who is trained in sex therapy and plan to return again in January. I learned so much about my own body that I didn't know and the suggestions and advice including reading materials were and continue to be helpful for me and in my relationship with my partner.

This is very helpful to me more than you will ever know. We have to travel about 6 hours to the hospital. Would you have any questions to suggest what I should ask?? 😔

I was prepared with the following questions.

1. Please explain the plan for surgery based on my diagnosis.

2. I was going to ask my surgeon if she planned to remove lymph nodes because I was worried about the edema that can occur. Before I asked my question my surgeon explained that she planned to sample sentinel nodes, This is a relatively new procedure so ask your surgeon how they plan to sample the lymph nodes.

3. When will I know the results (cancer stage) from my surgery? Your tissue will be sent to pathology where the pathologist will carefully examine and do other tests which can take a few days.

4. How long will I have to stay in the hospital? Can I have visitors (good question to ask during this pandemic)?

These are just few questions that I hope will be helpful to you.

Blessings,
Helen

Thinking of you today, Rose.

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.