Question on endometrial cancer stage 1A Figo grade 2 nuclear grade2 endometrioid adenocarcinoma

I just had a hysterectomy on 11/11 with large fibroids. I was unexpectedly diagnosed with endometrial cancer stage 1A FIGO grade 2 nuclear grade 2 endometrioid adenocarcinoma. I met with my gynecology oncologist today, and he said he wants the radiology oncologist to determine if radiation is needed.

Since this was not an expected diagnosis, there were no lymph nodes taken out during surgery to help determine cancer staging. Because it is a grade 2, radiation is a consideration, but it could also not be a consideration.

Has anyone been in the situation, and if so, have you had any issues with reoccurrence? I know I need to take advice from my doctor, but any experience is appreciated.

Comments

  • oldbeauty
    oldbeauty Member Posts: 379 Member

    Hello mdoughty,

    So sorry for your need to find your way here. You are in a tough position. You can read my profile and see my journey started out somewhat like yours. I too was foreclosed from getting a proper staging with insufficient sentinel node analysis. Although I got a second opinion at Moffitt, and was offered a restaging procedure, the radiation oncologist who guided me through the process urged me to bypass that and move on to radiation therapy because time was of the essence by then, he said. I can never know if a proper staging would have found the cancerous para-aortic node that was my first recurrence. If it had, I suppose that would have changed the Dx enough that I would have been offered chemo instead. I gather your myometrial invasion was less than 50%, which is good, but the grade two morphology is more aggressive. Tough call. No one has a crystal ball, unfortunately. Best wishes for your continued health and with your decision. Oldbeauty

  • MoeKay
    MoeKay Member Posts: 495 Member

    Hi mdoughty,

    I was treated 25 years ago for endometrial cancer, FIGO grade 2, nuclear grade 2, endometrioid adenocarcinoma. Since my diagnosis, the endometrial cancer staging has changed several times. After my surgery in 1999, I was initially diagnosed as surgical stage 1C. Interesting that my gynecologic oncologist did not fully agree with the pathologist, and staged me as a 2B, given a few high-risk features, including but not limited to extensive LVSI (lymph-vascular space invasion—more to follow on this). Staging changed in the mid-2000's and had I been diagnosed then, I would have been surgical stage 1B. Staging changed again last year and had I been diagnosed then, I would have been stage 2B, due to the extensive LVSI found at the time of my radical hysterectomy. So I've gone full circle over the past 25 years as far as staging is concerned, but it's also interesting that 2B was what my brilliant gyn-onc staged my cancer at back in 1999, and that was the stage he reported to the Tumor Board, not the 1C as originally found by the pathologist.

    Given that lymph nodes were not removed during your surgery, I'm sure you recognize that your stage 1A is not at this point the full picture at least without further confirmation.

    I saw two gyn-oncs before my surgery. Since it sounds like your gyn-onc wants your radiation oncologist to decide on your need for radiation, I would want to consult with another gyn-onc to get his/her input and to see if a further staging surgery is warranted. After my surgery, my gyn-onc (not my rad-onc) told me that I needed both internal and external radiation due to several high-risk features present in my case. These were a deeply-invasive tumor (approximately 80% myometrial invasion), a large tumor (about 4 cm.), a tumor arising in the lower uterine segment very close to my cervix, and extensive LVSI. When I consulted with my rad-onc after surgery, she only discussed vaginal brachytherapy with me. I told my gyn-onc what she advised. My gyn-onc said he would call my rad-onc to discuss my situation. After that call between the two specialists, they were on the same wavelength and they agreed that I needed both internal brachytherapy and external beam radiation.

    Given your gyn-onc's apparent willingness to leave the radiation decision to your rad-onc, I would feel much more comfortable getting input from another well-respected, experienced gyn-onc before proceeding with a further treatment plan. You certainly don't want to get radiation if you don't need it. On the other hand, you don't want to under-treat your cancer by skipping radiation if it is appropriate and warranted in your case.

    Wishing you all the best!

  • littlex
    littlex Member Posts: 6 Member

    Hi mdoughty

    I’m know this is a very stressful time Especially because this diagnosis was unexpected Just try to take a deep breath I had a radical hysterectomy 12/10/20 I had endometrial cancer the so called garden variety I was stage 1a (25%) myometrial invasion no lymph node involvement Grade 2 My oncologist wanted me to have radiation I had brachytherapy 5 treatments The radiologist said it was a no brainer that my oncologist wanted me to have radiation the treatment was not terrible each session was only around 5-7 minutes I’m 4 years out from the surgery and radiation I’m done with the follow up appointments with the radiologist and I see the oncologist every 6 months He said we can break up as of February 2026 which is 5 years from when I completed radiation

    I can’t tell you how to move ahead but if it were me I would have the radiation Why don’t give yourself the best possible chances

    Good luck please keep us updated

  • mdoughty
    mdoughty Member Posts: 5 Member

    Thank you for the response. It is a lot to think about. I feel like you went through a lot with all of this. My gyn oncologist will chime back in once we know what the radiologist thinks. I feel like there are so many options, but I don't want to do unnecessary treatment. I also don't want to regret a decision years down the road.

  • mdoughty
    mdoughty Member Posts: 5 Member

    Thank you for your response. I don't want to go through radiation, but I am scared not only because I want to prevent reoccurrence if possible. It is good to know the VBT is not terrible. I am worreid about that because I have reactions to medicine and very sensitive skin.

  • mdoughty
    mdoughty Member Posts: 5 Member

    Thank you for your response. Yes, it is a tough call. I am hoping I will feel better after meeting the radiology oncologist on Tuesday. I feel like there are so many factors that could make things worse in the long run, like keeping a part of my cervix, keeping my ovaries, and no lymph node mapping. My surgeon is willing to go back in to get the lymph nodes if needed, but that is another surgery. It is a lot to think about it.

  • littlex
    littlex Member Posts: 6 Member
    edited December 16 #8

    Hello again

    I assume that your surgeon is not an oncologist because you didn’t know you had cancer at the time of surgery You may want to meet with a surgeon who is an oncologist .They may suggest you have a total hysterectomy If you’re not planning on having kids this might be the best option for you They can remove lymph nodes at the same time for testing
    take your time to come to terms with this diagnosis but just know that you can handle this.
    Good luck

    Please keep us posted


  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    edited December 17 #9

    100% excellent post!! Agree with the suggestion of getting a second gyn-onc opinion here, if possible.