Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

Hi to all! I have a appointment next Tuesday at Rochester at 3:00pm to discuss my options and how we will proceed. 🙏🙏🙏🙏🙏

Good start. You will understand more which way to go. Best wishes ❤️

Hello @cheriels . I hope you have found a few ways to help with your racing mind; it isn't easy, is it? Like you, I had no symptoms except for the bleeding. I hope you're able to get more answers as soon as possible, and am glad you're here with the rest of us. Let any of us know what other questions you have; we don't have the answers so much as probably a similar experience that may be helpful to you as you start your road at Mayo.

@cheriels I'm so glad to hear you have support from your fiance, your loving dog, and your friends. Games and puzzles on your iPad sound like a good way to cope right now.

I had a laparoscopic robotic radical hysterectomy with everything taken including ovaries and fallopian tubes. It was amazing as I was in and out in the same day. My surgeon and the whole team was reassuring. I felt so cared for in the pre-op area and by the nurses in my post-op room. The cancer was staged 1a which is as good as it gets.

Will you let me know when your appointment at Mayo in Rochester is scheduled?

Hi
I have a call comming on Aug 29th and then go to Rochester on Aug 30th for a 3 pm appointment.

@cheriels That's good news that you will be seen next week. Knowing that you have that appointment so soon is good. Will your fiance go with you? It's good to have someone else with you during your appointments so that there are a second set of "ears". I am often way too anxious to pick up everything on my own so having my husband present with me to take notes and help me with questions was a huge help for me.

You might like to think about what you'd like to ask ahead of time and write your questions down. I did that and it helped to keep me focused. Many of the questions you ask here could be asked at Mayo Clinic.

What can you tell me about the cancer I have?
What does FIGO Grade3 mean?
Is FIGO Grade 3 related to the stage of cancer?
If a hysterectomy is done when will I get the results of what you found?

Will you let me know how your appointment turns out? I'll be sending you positive energy at 3 pm on August 30.

I had my 3 month (7 months after my surgery) follow up last week and my oncologist found what he thought was a small piece of scar tissue that he removed and biopsied. Yesterday he called to tell me that it was endometroid adenocarcinoma again. He has referred me to a radiation oncologist and ordered blood work and a PET scan. I had just the tiniest spot of blood a few days before my follow-up appointment, but have felt great. I was so shocked.

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

Hi Helen, Thank you so much for this post and sharing your experience. I am having a robotic hysterectomy, removal of tubes, ovaries, cervix and sentential node biopsy on Wed for endometrial adenocarcinoma. Reading your post has been very helpful. My surgery will be done near my home , not at Mayo, but I am comfortable with that. I have my moments of high anxiety, but my faith is strong. I have no family near, my parents and siblings have all passed. My daughter lives 750 miles away, but is coming to be with me. Fortunately she can work remotely. I was concerned about going home the same day and
pain management, but your post was reassuring. Thank you. Janis