Just diagnosed - Endometrial Adenocarcinoma Endometrioid - FIGO grade 1

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lyricalverse
lyricalverse Member Posts: 9 Member

Hi everyone,

I was just diagnosed with Endometrial Adenocarcinoma - Endometrioid type - FIGO grade 1 P16 and P53 wild type stains) on 2/28. Have appointment with Oncologist on March 10th. Seems like years away after cancer diagnosis.

I have had very heavy period since November 29th. Nobody should have to have a period this long. It has resulted in bad anemia. Dropped to 7.8 hemoglobin. I have been doing weekly iron infusions for the past 5 weeks.

Feeling sad. I am 45 years old. Heart disease (Had triple bypass surgery in 2013 when I was 36 and they could not repair one side of my heart). Type 2 Diabetic. Overweight. Not sure how all of my ailments are going to affect the prognosis/treatment of this cancer.

Dr. Google is not friendly. Do not recommend.

Carrie

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  • oldbeauty
    oldbeauty Member Posts: 369 Member
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    Hello Carrie,

    So sorry to hear your distress. Perhaps you are willing to share more information. On the one hand, a diagnosis FIGO grade 1 is "good" news. We could infer that your type of cancer is the "garden variety" endometrioid adenocarcinoma, and if it's early stage, very treatable...even curable. But when you say you've been diagnosed AND that you've had a menstrual flow for 3 months, that is puzzling. It would suggest you have not had a hysterectomy. Without surgery to remove the uterus (and perhaps ovaries and fallopian tubes), and a thorough pathology analysis, we would say that "diagnosis" is premature. Only the examination of removed cancerous organ(s) can result in a diagnosis that includes the type of cancer, its grade and extent (stage). Do you mean you've had a biopsy of tissue? Did you have an outpatient D&C? I empathize with your concern and acknowledge your fear as your state of mind right now. I would urge you to use whatever coping strategy you might know (deep breathing, meditation, voice-guided mindfulness, physical exercise, etc) to bring yourself back into the moment and not dwell on a parade of horribles. From the info you've shared it might be the case that you don't have cancer at all (biopsies sometimes are unavailing, for example). Next Friday will be here soon, and you'll get more information. Perhaps our intrepid CMB or others will answer and facillitate your access to older posts that could help you formulate the questions you have (and should have) for the oncologist. That might help you feel more in control as you wait. Please do your best to calm yourself and do some things you enjoy over the coming days. Be kind to yourself. If you need this community as the facts and events unfold, this is a phenomenally supportive group. Best wishes, oldbeauty

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Thanks for responding, oldbeauty!

    I had a biopsy with those results. The gynecologist said that I will probably have to have a full hysterectomy and they would determine stage at that time. Depending on those results, they would know if any additional treatments like radiation or chemotherapy would be needed. They set up an appointment for me to meet with oncologist next Friday (3/10). I will know more at that time.

    It was just a blow to receive this news. As I mentioned, I have been dealing with 3 months of heavy bleeding and iron infusions. So many appointments between GYN, Hematologist, and Cardiologist for testing to clear me for whatever procedure may have been coming. I honestly did not even suspect anything like this. There is no history of cancer in my family (with exception of my grandmother who had Ovarian cancer, but all had just assumed she was an anomaly).

    Anyway, hoping it will all be fine. Low grade. Low stage. Surgery and done? Just along for the ride now.

    Carrie

  • Forherself
    Forherself Member Posts: 999 Member
    edited March 2023 #4
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    Welcome lyrical verse. We are here for you. You have been diagnosed with a slow growing type of cell. You won't know your stage until after surgery, but many cases of your low grade cancer do not require treatment. You are younger, and young women tend to have better outcomes from what I have read. The exceptions are worrying, and waiting for surgery is very hard because we tend to think of the worst case scenario. The majority of low grade endometriod cancer, however, needs no treatment. So hope for that. I waited about 5 months for my biopsy! So 3 months of heavy bleeding is not long in the scheme of things. Try and keep busy.

    One other thing I like to mention is lymph node mapping. The surgeon can inject dye into your cervix and locate lymph nodes and visually inspect them. The fewer nodes taken, the less likely you will develop lymphedema after surgery, and the less time you will spend under anesthesia, which will be good with your anemia. Ask your surgeon about mapping. The accuracy is very good according to the studies I have read.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    lyricalverse, you do have a lot going on so please first try to take a breath. Trust me, we all know it is easier said than done, but old beauty and Forherself are saying things that any of the regulars would tell you.

    Please ask to work with a gynecologic oncologist for the hysterectomy as they specialize in gyn cancer maybe that is who you are seeing on 3/10? Also, after a certain age we all have to be cleared multiple ways prior to surgery regardless of all the other health issues. I was only 49 when diagnosed and had a chest x-ray and dye contrast CT.

    Try not to get too far ahead of yourself. Be prepared with a list of questions, and notebook, and if you are allowed a second set of ears of someone else to hear what is being said. There is a lot of information on this board from women who have been through it and will help. Stay away from Dr. Google. Let us know how Friday goes.

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Hi, Forherself. I have read a lot about this now and am trying to be optimistic. There is probably no use worrying about it as there isn't anything that can be done to change things. Just trying to get myself prepared for whatever may come. I will hope that only surgery is needed.

    Sorry you had to wait so long. My first Gynecologist was not taking me serious. Saw him way back in the beginning of January. Had me do ultrasound. He was really adamant about doing an in office procedure hysteroscopy and felt it would be best to place an IUD to stop the bleeding. I was hesitant to do that because of my heart disease and medications. His office also kept saying they were short staffed and they wouldn't be able to schedule any type of procedure until after April. I ended up setting up an appointment with a different Gynecologist (had to wait a bit for that first appointment, too) and 3 days after my first appointment with her, we discovered this.

    I have set up a little portfolio for this to take with me to appointments. I will mention lymph node mapping to the oncologist.

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    NoTimeForCancer, thanks for saying that. It has felt like people have not understood how difficult this has been for me. Mostly with work. Completely exhausted, lightheaded, etc. And even though they know this and that I am going through infusions, they treat me business as usual and pile on massive amounts of work. I thought about submitting for FMLA, but it is unpaid at my work. So really, it has just resulted in me having to work that much harder to make up the time I have had to take off for all the appointments (which have been many).

    Yes, the doctor I am seeing on Friday 3/10 is a gynecologic oncologist. Everyone has been mentioning my high risk for surgery because of my heart. But honestly, I had coronary artery disease and a bypass surgery. My heart function is actually very strong. I am more worried about my uncontrolled diabetes. I once went to an endocrinologist at my primary care physician's advisement. After telling her I was interested in weight loss surgery to lose weight and reverse the diabetes, she laughed and said that I would die on the operating table. Needless to say, I never went back to her. But right now, it has me wondering how much truth there was to what she said.

    I do have a portfolio I created to take with me. I am going to compile some things this week that I would like clarification/answers on. Thanks for your kind words.

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Just an update. Surgery is scheduled for Monday for a total hysterectomy. Have read all the advice on this board for post op recovery and think I am prepared.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Remember this is major surgery so be kind to yourself and 'rest' during your recovery. Let us know how you are doing and sending you good thoughts.

  • Forherself
    Forherself Member Posts: 999 Member
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    It's good you are having your surgery! I DID not like waiting. Good luck on Monday. Make sure you move according to doctors orders. Getting up may be hard, but it helps prevent blood clots, and respiratory problems. It helps prevent complications you mentioned you might be prone to. We are here for you.

  • oldbeauty
    oldbeauty Member Posts: 369 Member
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    lyricalverse,

    Best wishes for a good surgical outcome and easy recovery. Oldbeauty

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Hope the surgery went well. Take good care of yourself

  • Forherself
    Forherself Member Posts: 999 Member
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    Yes hope your surgery and recovery go well.

  • jan9wils
    jan9wils Member Posts: 202 Member
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    Thinking about you and hope your recovery is going smoothly.

    Jan

  • lyricalverse
    lyricalverse Member Posts: 9 Member
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    Thank you for the best wishes and thinking of me. Made it through the surgery just fine. Such a relief that there were no complications. I had to stay overnight because my surgery was delayed until late. They didn't start until after 5pm because the previous surgery in that OR took longer than planned. Then there were no rooms available, so I stayed in the recovery area the entire time.

    Recovery is going well so far. It is a bit rough getting up and down, but once I am either sitting or standing, I feel OK. Trying to walk every hour and keep my Tylenol/Motrin regimen up. Do not want to take the Oxycodone they prescribed because I want to prevent constipation. Seems like that plan has worked so far, as I was able to go and it was soft because of the Colace I've been taking.

    Hoping to get better quickly, and try to put this all behind me.

    Have a follow-up with Surgeon in two weeks (4/14). Hopefully they will have good news for me as far as not needing any continued treatments. Keeping my fingers crossed!

  • RyanT7
    RyanT7 Member Posts: 7 Member
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    I was diagnosed on February 28th as well, with Grade 1. My surgery is scheduled April 17 so I am a few weeks behind. Glad to hear your surgery went well!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    lyricalverse, so glad to hear you are mending well! It completely makes sense why you want to avoid the oxycodone - I know I thought the last thing I wanted was constipation after major abdominal surgery. Take care of yourself and also get some rest.

    RyanT7, there are lots of good posts, some are pinned to the top of this board to help you with surgery tips etc. As you may be finding, waiting is the most difficult piece. We are here for you.

  • Forherself
    Forherself Member Posts: 999 Member
    edited March 2023 #18
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  • Forherself
    Forherself Member Posts: 999 Member
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    We are here for you RyanT7 too!

  • RyanT7
    RyanT7 Member Posts: 7 Member
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    The waiting is absolutely the hardest part! Having a surgery date is helpful and I’ve already started reading some of the great advice about the surgery and recovery. Thanks for your kind words!

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
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    I'm the survivor with a potty mouth. I'd like to tell some of the people who aren't taking care of you where to put it! I know exactly where you're at emotionally.

    I was in this site last year all the time, and the women on this board will be your best supports of anyone you know, perhaps including close family. I am checked every few months, as I had the same kind of cancer you have, but I ended up with LVSI--lymph vascular space invasion. The cells wanted to meander around my body!

    So far so good, but my gosh, it's a long hard road. Take it one appointment at a time. In terms of types of cancer, you have the easiest one.

    Sending love. BTW, I used cbd-thc gummies as well as anti depressants.


    Deb