Overwhelmed and Impatient

StarryFights
StarryFights Member Posts: 3 Member

Hello ladies! I am 39, pre-menopausal, and was diagnosed via biopsy with Endometrioid Adenocarcinoma a few days before Christmas. I had the good fortune to learn about it in a short phone call from my ob/gyn because they were closing up shop for Christmas where pretty much nothing was explained to me. Dr. Google and these boards have been extremely helpful and comforting. I know now there's only a small chance this type of cancer will be super serious, but the idea of a major surgery and early menopause is enough to cause my head to spin.. let alone that fear that I might be in the statistically unlucky minority.

The earliest the gynecological oncologist at Vanderbilt could get me in is January 11. I'm on the wait list, but I really wish they'd just given me a little bit of personalized information before then. I've looked up every single word that was in the lab report that was available on their portal. There are just a few sections that I couldn't figure out. Like ER and PR highly positive in 80% means nothing to me or the internet, so I'm stuck waiting and wondering.

Anyway, thank you for listening. I'm tired, crampy, crabby, and my husband is trying hard to hide his worry from me and kinda failing. Nice to meet you.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,337 Member

    StarryFights, it is overwhelming but try to take a breath.

    Great that you were turned over to a gyn onc and while it sounds far, far, away, Jan 11 is right around the corner. Most likely ER means Estrogen Receptor, and PR means Progesterone Receptor, but ask the doctor to explain it to you.

    I would warn you on Dr Google as he is outdated, and a hysterectomy if what we really determine what you are dealing with. You may have found the thread on surgery prep, and there is lots of good tips in there. Again, please try to take a breath and let us know as you find out more.

  • ConnieSW
    ConnieSW Member Posts: 1,669 Member

    I’m glad you found your way here so soon after diagnosis. We all know how difficult the period you are in is. Hang on. Knowing what you are dealing with will help. My best to you and your husband

  • Giana23
    Giana23 Member Posts: 12 Member

    Thinking of you. Keep us updated.

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

     Hi everyone,

    I am new to the board. Nice to meet everyone. I was diagnosed with Endometrioid Adenocarcinoma FIGO Grade 1 on Dec 28. StarryFights - I was reading your post and saw you were diagnosed a few days before Christmas too. My biopsy said ER and PR positive too - it was explained to me that means the cancer is fed by estrogen and progesterone. This sure isn't the xmas gift I was looking for! Anyways, I hope your gyne oncologist appt went well and your questions were answered. I had mine on Jan 9 and will be having a full hysterectomy (robotic - unless need full incision) on Feb 5. I'm ok w/that as I'm 58 and the ship has sailed for child bearing days. I am still in shock over all this though.

    I also had an ultrasound that states I may have breast cancer. I have a biopsy on Tues. The radiologist said the mass looks small and contained, but looks cancerous. I can't even get my head around all this.

  • StarryFights
    StarryFights Member Posts: 3 Member

    I finally had my oncology appointment. The outcome is going to be a hysterectomy but they are only taking my ovaries if it visually appears like the cancer has spread anywhere outside my uterus. This was a really hard decision, the higher risk of heart disease vs the higher chance of cancer. It's an impossible guess to make. Also found out my heart is slightly enlarged and I'm way low on vitamin d! How odd and uncomfortable this whole strange journey is.

  • Forherself
    Forherself Member Posts: 940 Member

    It is hard making these decisions. It's not a matter of right and wrong. It comes down to which choice you think gives you the best chance. I had to decide if I wanted treatment or not. No one knows if my stage and high risk cancer needed treatment at my early stage. I had to choose and take a risk with both decisions. It sounds like you are there too. You are young so I see why they are making that plan.

  • Forherself
    Forherself Member Posts: 940 Member

    It was one of the things I had to learn too. Treatment decisions are not written in stone. We have to decide. It sounds like your surgeon has made a good decision and will do biopsies during surgery to decide on the ovaries. You are young so it is more common to leave the ovaries if it is feasible. Being low in Vitamin D is very common. And ask about sentinel node mapping. It may be a good option for you.

  • StarryFights
    StarryFights Member Posts: 3 Member

    Yeah, the doctor is doing the sentinel node mapping. I had read about that and was happy when she brought it up. She's doing the surgery robotically. The plan is to go home the same day but then take it easy a few weeks minus some walking to prevent blood clots. Now all I've got is to wait for the scheduler to call me.

    Also, I need to make a plan to somehow keep my little pups from jumping on my stomach after surgery!

  • hopeforthebest
    hopeforthebest Member Posts: 13 Member

    Hope you can get the appt soon. I'm having the robotic too and said I can go home same day. That took a load off as I didn't want to stay in hosp. But packing a bag in case things change. One of my little guys (10 lb Yorkie mix) uses me as a vault sometimes so I started putting this cardboard box top - about 12 inches - over my stomach and he goes around it now.

  • Mercorby
    Mercorby Member Posts: 77 Member

    Hi there,

    Come on over to sharecancersupport.org/uterine-cancer/. We have reliable info, webinars, support groups (one specifically for young women), and a helpline. You are not alone.

    Corby