Hi. I'm new here with a new diagnosis of endometrial cancer.

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EmmyZ
EmmyZ Member Posts: 4 Member

To start, last August I saw my PCP for my annual exam and wanted estrogen cream for dryness in my vaginal area. I was a medical transcriptionist for 40 years and did lots of OB/GYN reports with older women needing treatment. I asked to be referred to a gyn, but he said he could prescribe the cream if needed. I love this guy. He's been my doc for more than 15 years and has done all my Paps since then. There was just something about this that I wanted to see a gyn so he said no problem.

I finally got an appointment in November. She was very nice, did a bimanual exam and said she wanted to do a pelvic ultrasound before prescribing the cream. She felt my uterus was thick and just wanted to check it out. The US showed a 14 cm thickness of the endometrium. She scheduled a biopsy for January in the office. During the procedure, she was not able to obtain many good samples. So I was scheduled for a hysteroscopy/D&C on February3. Four days later, I found out it was cancer.

I saw a gyn/onc on February 16. She is very nice and very forthcoming. She informed me, the biopsy showed the cancer to be Grade 1 and was reassured that this may mean the Stage is I, but could not guarantee that. I am now waiting for a CT scan she thought would be helpful and I agreed. Then I will have a robotic assisted complete hysterectomy.

I am anxious to get results and surgery out of the way. I have many things going on in my life not the least of which is my health, but also an expected move this May or June. Timing was never one of my best qualities.

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  • Kathy G.
    Kathy G. Member Posts: 244 Member
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    Welcome EmmyZ!

    Glad you were able to find this site as it has been extremely educational and supportive for me due to so many genuinely caring women.

    It has been more quiet here than usual, but I am sure you will hear from many others very soon.

    I was diagnosed with grade 1 from my office biopsy, and stage 1 after surgery. No further treatment was necessary after the hysterectomy. I had minimal pain, and an uneventful recovery despite bladder spasms for a few days that first week after surgery.

    I was tired, but this is major surgery which affects you physically, mentally and emotionally.

    I have been 10 years without a recurrence...praise be to God!

    All your doctors sound great: very knowledgeable and proactive! Sounds like you will be watched closely, and receive good care.

    Just fyi I was diagnosed with vaginal atrophy a couple years ago. The nighttime itchiness is what drove me to the doctor as well as multiple UTIs. I was able to get a prescription for estradiol cream bc I was low grade/stage and 10 years out. I believe I read the cream is often prescribed if you had a less aggressive type cancer bc it is not absorbed into your system like other types of hormonal remedies, but I'm not sure.

    At any rate it has relieved my symptoms.

    Best of luck on your journey...may you be blessed with a grade 1 stage 1 n[n aggressive form of this cancer.

    Kathy

  • EmmyZ
    EmmyZ Member Posts: 4 Member
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    Hi Kathy

    Thanks for the kind words. I am very hopeful about my surgery and pathology. I will keep everyone updated as my journey progresses. I lurked this site for a week and read all of your comments, questions and answers. Thanks to all for your encouragement to everyone.

  • Forherself
    Forherself Member Posts: 989 Member
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    Welcome EmmyZ. It sounds like you made the right decisions. I used to transcribe for my husband. You learn a lot reading all those notes. This is a very worrying time. The chances are good that you will be low stage and need no treatment. There is lots of good information about recovering from hysterectomy on this website. I think it's good to read about experiences from this of us gone before. I had sentinel node mapping. It cuts down on the duration of surgery and the number of lymph nodes removed. You might ask your surgeon about that. I signed a consent form for both laparoscopy and abdominal incision surgery. I ended up having both. If your uterus is enlarged it is easier to remove through an incision. I would also ask about genetic testing. I had mutations that changed my grade but was very early stage after surgery. Feel free to ask any questions.

  • FourBee
    FourBee Member Posts: 52 Member
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    Best wishes that you have an easy surgery and full recovery.

  • jan9wils
    jan9wils Member Posts: 202 Member
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    Hi Emmyz,

    I'm glad you insisted on seeing a gyn. Sometimes our "gut instincts" are just so spot on! I had robotic surgery in 2014 and it was a surprisingly easy recovery. After 6 weeks I was doing everything I normally did except for having sex (Dr insisted on 12 weeks wait to allow vaginal cuff to heal completely). So maybe a move in the summer will be just fine for you. Please check back in and let us know how you are post-surgery.

    Jan

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
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    Hi Emmyz,

    Welcome.

    I have been on the estradiol cream for about 18 months. To clarify when it is appropriate: I had uterine serous carcinoma, which was a grade 3 and not estrogen dependent. (most serous is considered grade 3 but the pathologist determines that) Even at that, the cream was not prescribed for me until I had really serious issues with vaginal atrophy, stress incontinence and very painful internal exams due to tissues being delicate. I also had vaginal brachytherapy, which also can have a serious effect on the tissues. If you have endometrioid uterine cancer which is usually a grade 1 cancer and fueled by estrogen, they will not prescribe estradiol for you. Your GO will know what is appropriate for your cancer.

    I will add to all of those ladies with serous, non-estrogen dependent carcinoma, the estradiol is a wonderful product. All the burning went away and the tissues are in much better shape. My last internal exam was not painful.

    Denise

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,397 Member
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    EmmyZ, once you have the hysterectomy they will be able to give you a definitive answer on what type/grade you have, and it may not require and treatment but you are working with a gyn onc so that is good.

    If you start any treatment and have to move, you would want to ask for a referral to your new location. It is much easier to get that if you are in active treatment or within the first few years. I can tell you that just trying to find a doctor to continue to follow me 10+ yrs out was a challenge, but I could hear in the responses how I would have had a gyn onc to work with otherwise. I think the biggest challenge for me was the insurance issues but a month of calls finally straightened it out.

    Please let us know how you are doing.

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Hi EmmyZ,

    I have new diagnosis of endometrial cancer as of 2/28. Do you have results of CT scan yet? Have they scheduled your surgery? Good luck to you!

  • EmmyZ
    EmmyZ Member Posts: 4 Member
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    I had my surgery on Tuesday, went home Wednesday. My cancer was only in the uterus, the endometrial lining so I suppose my chances of having to under further treatment are low. I have a followup with my gyn/onc on March 21 and hopefully the pathology report will be available and final decisions can be made. She said it looked good for just monitoring for now. I didn't have any questions at the time but she talked to my sister and I got the additional information from her. I just heard her say the cancer didn't spread.

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    That sounds like the best type of outcome so far! I'm very happy that you were able to quickly get in for surgery. I hope that you are recovering well and feeling OK.

  • Forherself
    Forherself Member Posts: 989 Member
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    That seems like a very long time to wait for your staging results. I would call the office and request they share results sooner. That is good news it didn't spread outside the uterus, but you need to know if it spread into the uterine wall. If it is indeed only in the endometrium that is good news.

    I hope your recovery goes well.

  • EmmyZ
    EmmyZ Member Posts: 4 Member
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    Good new!!! My path came back as stage Ia, no further treatment needed. I am very grateful to my doctor who is so great. I have a postop visit with her in 2 weeks. I am also grateful to all the fantastic women on this site who are so generous with their thoughts and advice.

    One question I will go over with her at my visit, but maybe one of you know. I am the only female in my maternal branch of my family who has had a gynecologic cancer. I have a sister, a niece and a grandniece. Is there a hereditary component to endometrial adenocarcinoma much like breast cancer? I did not have CA-125 done.

    Thanks again for all your support.

    Emmy Z

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Emmy, That IS great news! I am so happy for you!

  • jan9wils
    jan9wils Member Posts: 202 Member
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    Glad to learn you are 1a. I know Lynch syndrome is hereditary. They likely tested you for that.

    Jan

  • Forherself
    Forherself Member Posts: 989 Member
    edited March 2023 #16
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    That is great, great news. Thanks for sharing it. I think there is a hereditary component to endometrial cancer. If you have a first relative with history of endometrial cancer you have a higher risk. They can ask their own doctors about any extra screening.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,397 Member
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    Awesome!!! We all love to hear this news. As Jan pointed out, Lynch syndrome is a pretty standard test now so follow up on that, but otherwise so happy for you!

  • lbeck100
    lbeck100 Member Posts: 17 Member
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    So with grade 1 / confined to uterus but positive for estrogen and progesterone we can never get estrogen again? I pray this is not true - once they remove everything can’t we get estrogen then?

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,397 Member
    edited March 2023 #19
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    lbeck, I saw on another post you said you have endometriod cancer, but typically you will get the full report after you have the surgery. I know that hormones would feed my cancer, UPSC which is grade 3, so not only cannot I not take any I personally choose to avoid soy as the body recognized that as hormones. I had heard it and then read an article on that very topic when I was sitting in the waiting area waiting for my radiation.

    Avoiding soy, especially the highly processed soy protein isolates, is hard to do. For me, it seems like there is something to all the highly processed foods and illness/cancer we have.

    There are cancers that you can take hormone therapy for, and I suspect one of the other wise warriors here will chime in with their knowledge soon.

    Try to take a breath, it is all very overwhelming but lots of good folks here always checking in and supportive.

  • lbeck100
    lbeck100 Member Posts: 17 Member
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    Thank you- I’m just praying someone here knows - I read this guidance has changed and the risk with HRT is 2.1% of recurrence vs 1.9% ur I’ve heard otherwise as well. I would take that chance - yes processed foods are a big problem - everything I eat is fresh and I cook - no convenience items but I’ve always been this way - especially since I got lupus and now I stopped meat be ages of what I’ve read - thank you for your response. If the % is 1.9 vs 2.1 - if 100% take that risk for the whole body protection estrogen provides

  • lbeck100
    lbeck100 Member Posts: 17 Member
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    I’m also wondering if once they remove everything h shouldn’t the cancer be gone so why would it matter what that cancer fed on if it’s gone? Just thinking out loud - thanks again