Just diagnosed with Endometrioid Adenocarcinoma: What to expect?

Not yet. I spoke on the phone with my Dr. He said he would explain more at my next appointment

@cmb2022 Your diagnosis, surgical treatment and stage (I saw this on your previous thread where I believe you indicated Stage 1a for endometroid adenocarcinoma) is the same as me. Including the pelvic wash findings. Here is what I learned from my GYN/ONC surgeon:

The significance of positive cytology in pelvic washings (examination of single cells by a pathologist) is and continues to be debated. Prior to a few years ago the presence of positive washings in early stages like yours and mine in non-aggressive cancers (Stage 1) moved us to Stage III meaning that the cancer had spread to regional areas. At that time adjuvant treatment (radiation, chemotherapy, hormonal therapy, multimodal treatment) was often recommended. However, the standard has changed based on the evidence from research and recommendations from the Society of Gynecological Oncology and so in my case adjuvant treatment was not recommended by my surgeon.

In my case one of the questions I was asked after surgery given the pathology findings from cytology was if I had a D & C with hysteroscopy? The answer was "yes, from my local gynecologist" which was when the cancer was detected and diagnosed. I was told that the hysteroscopy can introduce cells into the peritoneal cavity that show up in the pelvic washings and biologically these cells look the same as a cancer that has spread to this area but did not get there as part of the disease.

So, this is a long way of me saying that the presence of cancer cells in pelvic washings is complicated and can be there for many reasons other than the process of the cancer itself.

It is standard practice to have regular follow-up appointments (surveillance) for our cancer diagnoses as it's part of the recommended cancer survival plan. How often those follow-up appointments occur and what happens at those appointments (physical exam, other tests) is different for different people, types of cancer, diagnoses, and you.

When is your appointment with your doctor? Will you come back here and tell us what your doctor recommends for follow-up? There is a lot of experience here at Mayo Clinic Connect and while we aren't health care professionals we can offer support you and help you find information.

Thank you so much for your reply. My appointment is March 4th. I will absolutely come back and share what my Dr says. I didn't have a hysteroscopy or D & C. I did have an endometrial biopsy about 7 weeks before my surgery and it showed Complex hyperplasia with atypia. I was curious of what types of tests were performed and the frequency. It is such a scary time. I must say I thought once I had surgery I would be free to carry on my life and was blindsided to learn that I had cancer. I am sure most everyone who gets such a diagnosis feels this way. Thank you again!

@cmb2022 Was the endometrial biopsy performed in the office? That's what I thought my local gynecologist planned to do but he thought I was very low risk for uterine cancer so he recommended the D & C based on sonogram findings that showed endometrial thickening. Like you, I was completely blindsided by the diagnosis after the D & C. And yes, we hope for the best, don't we. Now I'm cancer survivor. I will share that the adjustment to this new perception of myself has taken time and the shock of the initial diagnosis went away quickly enough after there was a medical action plan in place. And then there is Mayo Clinic Connect which has been a lifeline for me. The support here is awesome.

Your appointment is coming up soon. March 4 is around the corner. How are you taking care of yourself?

Yes, the biopsy was done in the gynecologist's office. I can still hear my surgeon telling me it was cancer. I don't know that I will ever forget his words. For now I am just trying to recover from surgery. It was just 12 days ago. I am still confused and processing it all. I am also dealing with menopause and that is definitely something new to me.

Thank you so much for all of your insight and most of all for the support! ❤

It took me about 3 weeks to get my energy back after the surgery. Twelve days is pretty recent so I imagine you still have some healing time ahead of you. Yes, I imagine you are confused and not even sure what questions to ask your doctor. How about if you start writing down your thoughts. Over time perhaps your thoughts will help you formulate questions. I go to all my appointments with questions written down and I take notes during my appointments.

Ah, yes, menopause. Were you already menopausal before surgery? That's a lot to deal with.

Will you have someone with you at your appointment?

I do have a few questions written down. Any suggestions are appreciated. I am so overwhelmed.
No, I am 46, so I wasn't menopausal at all and I will attend the appointment alone. Thank you so much for being so helpful!

No wonder you feel confused and overwhelmed. I had such brain fog during menopause and that was before the cancer diagnosis.

Is there a friend or relative who can go to your appointment with you? I'm asking this because it's such a stressful time for you and you might like to have another "set of ears" present.

Are you receiving your cancer care at a university or major medical center? If so, can ask your doctor to refer you to a cancer support group at the medical center? I learned about such a group from the Cancer Education Center at Mayo Clinic in Rochester when I was there in December. I asked for a referral and will first meet with the psychologist virtually and then with the group. Also virtually. I'll think of some other questions too and come back here.

No, this isn't a major university or medical center, although it is one of the best in our remote area. I will ask about a support group at my visit. I think that would be so beneficial.

I will consider asking my sister to accompany me, but I prefer not to have the distraction, so that I can concentrate on the news and info myself.

This is very stressful. I don't sleep well, and feel like I cry a lot..
Somedays I feel a little more like my old self and somedays I feel so confused.

Thank you again for being there. It means so much to me.

If not a support group then maybe a mental health clinician?

You wrote that some days you feel more like your old self and other days you're confused. And you have trouble sleeping and cry a lot. I know personally how awful all that is. It's the rollercoaster of emotions that go with what we're going through. Some days or hours we feel up and somewhat happy and other times we're down. I don't know about you but I'd like a smoother ride as I've never been a fan of roller coasters.

You shared that you're menopausal since the surgery. Is this something you can add to your list of questions for your doctor? Or see your gynecologist?

I was referred to a Women's Sexual and Health Clinic at Mayo in Rochester after my surgery. The Clinic is filled with knowledgeable and supportive providers, including a psychologist, who gave me information and suggestions that have really helped me. Like you, I live in a remote area and there is nothing like that here. Is there such a clinic or practice near you?