New to Board - Anyone recently diagnosed with Endometrioid Adenocarcinoma FIGO Grade1?

hopeforthebest
hopeforthebest Member Posts: 13 Member
edited February 12 in Uterine/Endometrial Cancer #1

Greetings,

I was diagnosed Dec 28 with endo cancer. Trying to get my arms and mind around this. I am 58 yrs old and had post-menopausal spotting which led to an ultrasound and then a biopsy. Full hysterectomy scheduled for Feb 5, 2024, and staging will be done with tissue sample as well as identification if cancer has spread to lymph nodes.

I like the gyne oncologist I met with and feel confident in her and her ability. Just can't believe this as I've always been healthy. I had a mammogram so I could be 'ready' in case I needed surgery and mammo came back with suspicious mass detected and am having breast biopsy on Tues, 1/16. Radiologist didn't say it was cancer, so I asked her if it looks like cancer. She said yes. Ugh. Got both these diagnosis on same day - Dec 28. I am still in shock and it feels surreal. I am doing the next thing as don't know what else to do. It's now a wait and see scenario.

Anyone that is in a similar boat or has been, please feel free to share. I believe we help each other and get through tough times by being kind, listening and sharing our struggles, solutions and triumphs. Peace to you all and I hope this note finds you well and comforted.

Comments

  • Forherself
    Forherself Member Posts: 946 Member

    Welcome Hopeforthebest. Sorry to read about your recent diagnosis and now breast biopsy. But you do have hope. When you ask a doctor if it looks like cancer they will usually err on the side of caution. You will be happy if it's negative, but mad if the doctor said it didn't look like cancer and was. As far as your endometrial cancer grade 1, the most likely outcome is that it won't have spread and you most likely will not need treatment. Maybe brachytherapy. It is hard when you hear cancer. It is scary. The unknown is hard to deal with. But here we are having done all this before you. And we are here to help. Please don't get a head of yourself. Grade 1 is called endometrioid (most often). That will help you read about it. If you have any specific questions please feel free to ask. I had a high grade serous cell but they didn't find any malignancy in my hysterectomy tissue. I had no treatment. My surgery was 5 years ago. Most women who have stage 1 endometrioid and need to treatment drift away from this board. But if you search you will find some.

    Sue

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Thank you so much :-) What you said is sooo true - thanks. I needed to read that. Yes, I would be mad if the Dr didn't say it was cancer and it was! Nice to hear your surgery was 5 yrs ago and you had no further treatment. I'm hoping for that as well. May I ask if you had to get scans or anything in those 5 yrs? I would imagine so, but this is all new to me. My Father had Stage 3B lung cancer (Inoperable) and that's the closest I've been to cancer until now.

    Thank you again for responding, I so appreciate it.

  • Forherself
    Forherself Member Posts: 946 Member

    Yes I had scans. But only for symptoms. I had hip pain and sometimes that is a recurrence, mostly of the high grade cancer, I had serous endometrial intraepithelial carcinoma. But it turned out I had a torn gluteus muscle from overdoing PT for my back surgery. But it seemed the first couple of years I was worried any pain was a recurrence. It took about 4 years to relax. I did NOT have routine scans or a CA-125. I think the low grade, low stage cancers do not need routine scans. I did, and still do, have visits with my oncologist for a pelvic exam. It started off at 3 months, then six months and now yearly.

    All this was new to me too, and I am an RN! Big learning curve. Try not and read too many articles. They are old AND they used to group high grade and low grade cancers together so both groups had inaccurate information. I don't read any articles older than 5 years. Treatment has come a long way!

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Thank you! It's funny as I was thinking to myself today that I am reading too many articles - ugh - I need to get back to normalcy. Didn't know they used to bucket the cancers together - that's good to know. Thanks again for taking the time to respond.

  • Forherself
    Forherself Member Posts: 946 Member

    You are welcome. One other suggestion, ask about lymph node mapping. Some surgeons removed a lot of lymph nodes. You can end up with lymphedema, swelling of your legs. Mapping injects a dye into your cervix during surgery so the surgeon can find and inspect lymph nodes. They are not very different from surrounding tissues. The surgeon can then decide if they should take more than sentinel lymph nodes. I had mapping. It is 97% accurate and prevents a serious side effect. You can read about it. It also takes about 2 hours off the time you are under anesthetic.

  • MoeKay
    MoeKay Member Posts: 474 Member

    Hi Hopeforthebest. I want to wish you well on Tuesday and hope that your breast biopsy is benign.

    Over the years, I've had more than a few mammograms with suspicious results that ended up being benign. The first one was a couple of weeks before my endometrial cancer diagnosis in 1999. For that mammo, I only had to get a few more views taken before I got the all clear. The next breast issue was after my hysterectomy when I went for a consultation with my radiation oncologist. She did a breast exam and didn't like an area of irregularity she felt in my right breast, so she sent me to a surgeon who performed an in-office needle biopsy. That was normal also. Then about a year after my endometrial cancer diagnosis, I had a mammogram which assessed my left breast as "suspicious." That time I underwent a stereotactic Mammotome biopsy which was negative. There are a few more chapters to my breast saga, but I think the foregoing is enough so that you get the picture. My point is that a lot of questionable things are found on mammograms and otherwise, and I think radiologists and other health care professionals have to err on the side of extreme caution so that nothing significant is missed.

    Like you, I too was diagnosed with endometrioid adenocarcinoma, but mine was grade 2.

    Good luck to you!

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Yes, Dr is going to do the ln mapping - thanks for the info

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Thank you MoeKay - that makes me feel better and does help a lot. I felt so emotionally crushed by the endo dx that I automatically assumed the worst. Appreciate the kind words. I'm sorry to hear you had to go thru what you did.

  • KLKEKL
    KLKEKL Member Posts: 4 Member

    All the best to you, hopeforthebest. I was also diagnosed with endometrioid adenocarcinoma gr 1. Going for a CT scan next week and then further instructions. I came here to hear stories of others who have had this and just for some support.

    I'm concerned about the "focal squamous metaplasia" part that was in my test results. My doc is referring me to a hospital out of state because there isn't anyone near us who does the surgery and treatment.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,342 Member

    KLKEKL, I hope it isn't a far trip for your doctor and treatment. Are you going to work with a gynecologic oncologist? They aren't around every corner, so it is possible that is why he has you traveling. Don't be shy to ask lots of questions and lots of tips on here on surgery prep, which sounds like it would be your first step. Try not to get too far ahead of yourself here, you would only fully be diagnosed after the surgery.

  • KLKEKL
    KLKEKL Member Posts: 4 Member

    NoTimeForCancer - we live kind of in the middle of nowhere. Will have to travel about 6 hrs to the hospital. I don't think she's a gynecologic oncologist but I'll find out. Thanks for the advice. I'm not one to shy away from asking questions so that's a good thing.

  • Forherself
    Forherself Member Posts: 946 Member

    I found this on the Mayo Clinic website. Overview

    What is squamous metaplasia?

    Squamous metaplasia refers to noncancerous (benign) changes in squamous cells in your epithelium. The epithelium is a thin tissue that lines glands and organs, including your skin.

    Squamous cells exist throughout your body. In rare instances, squamous metaplasia can become cancerous (malignant).

    If you had a biopsy that reported endometrial cancer you should be seeing a gynecological oncologist. I would check out the doctor you are seeing and find out if that is the case. Good luck!

  • KLKEKL
    KLKEKL Member Posts: 4 Member

    Thanks for the help. I also found it and discovered it's not as bad as it sounds. I'm checking out the dr on Monday.

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Thanks for your reply. I had the hysterectomy 2/5 and it turned out to be stage 1a of which I am grateful.

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    All the best to you , KLKEKL 🙏. I hope I were able to secure a Dr. you have confidence in. We traveled an hour to the surgeon who did my hysterectomy on Feb 5, and I feel it was so worth it. The ride home from the hospital was not bad at all because I was still feeling the effects of the anesthesia and other meds (they gave me meds for nausea) and it really wasn’t too bad. I brought a small pillow to put by my belly and that helped. Not sure if you saw my post above but the cancer turned out to be grade 1a - I hope you get the same results. Sending strength and good vibes to you. 🥰

  • KLKEKL
    KLKEKL Member Posts: 4 Member

    I just saw your results. Good for you! 🙏

  • Forherself
    Forherself Member Posts: 946 Member

    That is hopeful. I didn't want to say good news, because it is still hard. I hope you don't need further treatment! but if you do there is lots of support here.

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Hi, I mentioned the results only because I was also diagnosed with endometrioid adenocarcinoma (FIGO) grade 1 and thinking and hoping your results may be low grade too. 🙏

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Thank you 🙏. The surgeon said no further treatment for the endo. the breast lumpectomy surgery is in 2 weeks to remove the breast cancer and will need further treatment for that - radiation and hormone based chemo (aromatase inhibitor). I have to take it One day at time or this gets too overwhelming. The AI is taken for 5yrs or more? and have concerns about taking that and how it will affect me physically and emotionally, but I’m staying in the present and focusing on healing from the hysterectomy. If I let my mind project into the future, it gets to be too much. I’m writing ✍️ this so it sinks in for me - haha. Thanks for letting me share.