Terrified and can’t decide what to do. Precancerous, doctor tells I need full removal of everything

D2023
D2023 Member Posts: 3 Member
edited June 2023 in Uterine/Endometrial Cancer #1

Hi everyone!

my biopsy came back with borderline adenocarcinoma, and suddenly I was offered atomic bomb version - full removal of uterus, ovaries, cervix - all of it. Sounds a bit too excessive to me, and I am not sure what to do? They say it has 25% chance of developing cancer. I am 52, thin, fit, eating healthy and never smoked, never was on hormone pill and have 2 kids.

I am in a new relationship after 20 years of abusive marriage, finally happy - and the very thought of removing all the woman parts makes me terrified.

please , tell me if you had any success going alternative ways, like with change of diet, exercise etc.

I am terrified of the after surgery- how the sex life would be if I am totally hollow ? Is there any possibility of orgasm? And sex drive left?

my case is weird, as if it would be a tumor developing, then the choice is clear and you have to deal with it. But I was getting biopsy “ just in case”, worried about cervical cancer after having HpV, and it came precancerous as far as I understood, so I was very surprised with the nuclear version of “ removing all” suggested.

is there more testing to do? What should I ask for? Anything? Please, help….

Comments

  • cmb
    cmb Member Posts: 1,001 Member
    #2

    You’re in a very difficult position right now regarding the recommended surgery since you’re still in the precancerous stage. I hope others can share some thoughts with you too.

    For myself, I had a D&C/hysteroscopy for vaginal bleeding at age 52. A benign polyp was removed then, which stopped the bleeding I was having.

    But I wasn’t so lucky nine years later when the D&C/hysteroscopy for another episode of vaginal bleeding led to a cancer diagnosis with surgery, chemo and radiation to follow.

    In hindsight, I wish that the doctors had offered me the option of having a hysterectomy when I only had the benign polyp. I understand why they didn’t think that was necessary at the time. But that didn’t stop me from regretting that I hadn’t had that done. Especially when I learned after surgery that I have a genetic mutation, Lynch Syndrome, which predisposes me to having several types of cancer, including uterine cancer.

    So you may want to ask about having some genetic testing done now to determine if you have any risk factors that would impact your decision about the recommended surgery.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #3

    Welcome D2023,

    I was dx and treated in 2018, 1a, UPSC with LVSI. I had what they are suggesting for you, surgical removal and I also had chemo and radiation. I can only speak for myself, but I would have given ANYTHING to not have gone through what I did physically and especially emotionally during my time of dx and treatment. Losing the lady parts is the very least of it, the emotional aftermath still lingers 5 years later and physically the chemo and radiation caused side effects long and short term. I am not sure if adenocarcinomas are just endometrioid or can be the more aggressive serous, which is what I had. I tried googling it but did not come up with anything definitive, perhaps someone with more knowledge can help.

    You can avail yourself of a 2nd opinion at a NCCN cancer center, who do remote opinions if you are too far away. Your case then can be reviewed by GO who see these things everyday.

    If I read your comment correctly, you said you had a HpV infection? Given that HpV is one of the leading causes of cervical cancer I think your docs are being wise in their recommendations.

    Post surgery I am doing fine, and I am 72. I was in menopause for 15 years prior, so that is a big difference as well.

    Please click on any of our names and many of us have completed an "about you" part which tells our stories, the good and the bad.

    We all have to consider our options, talk to the docs, weigh the risks and make our own decisions, but there are many, many women who wished they had the options that you have before they developed actual cancer and had to deal with the aftermath. A second opinion would clarify your options and better ability to judge your risk. Also, if you are pre-cancerous I believe you will have to have extensive follow up visits, testing, and worry for years, if not the rest of your life. Sadly, for all of us there are no easy choices, but you can educate yourself regarding your best options.

    Good luck to you and let us know how you are doing.

    xxoo

    Denise

  • D2023
    D2023 Member Posts: 3 Member
    #4
    https://csn.cancer.org/discussion/comment/1706668#Comment_1706668

    Thank you so much for sharing your story! I am sorry it turned out for you that way, but this is huge for me to know that. You helped me out of limbo of being unable to decide. I saw a doctor today, and he was attentive and very realistic, matter- of- fact kind of way. So I am scheduling my surgery in September - at least I will have my Summer…. Thank you, your reply did make a huge difference in my thought process. Never easy to decide something like that, but at least I am more calm about it now. And I did ask about genetic testing, and they promised to look what could be done about it.

    please stay cancer- free! Hugs!

  • D2023
    D2023 Member Posts: 3 Member
    #5
    https://csn.cancer.org/discussion/comment/1706676#Comment_1706676

    Thank you for replying, I really was not sure if I would get anyone’s attention, but I hear real people with real stories, and that makes it so much more reassuring. Not easier, but at least knowing that you were going through such a harsh situation and are able to help others makes me feel better.

    yes, they told me today that there are 2 types, and one comes with obesity, smoking etc, and 2 is more aggressive - and since I don’t have risk factors, it might be type 2, which is scary.

    I did ask for a second biopsy as somehow a little girl inside me still hopes that there might be some mistake like switched test results or something like that, so I just wanted to make sure it is real. And I have a preliminary agreement for a surgery in September.

    thank you for helping me to come to that conclusion. Yes, worrying about it for the rest of my life is not how I hoped to live. I had my share of troubles, but apparently it was not enough.

    Glad to hear you are doing fine post- surgery. I hope I will be too!

    Hugs!

  • cmb
    cmb Member Posts: 1,001 Member
    #6

    Waiting until September for your surgery is very reasonable. That will give you time to get any additional testing done before surgery, if you want.

    Most women now have laparoscopic hysterectomies. Recovery from this procedure is usually much quicker than the old style abdominal hysterectomy. I felt fine within just a few days after my surgery, but I did have a restriction against lifting anything over 10 pounds for the first 3-4 weeks. For me, the surgery was the easiest part of the cancer treatment process.

    See https://csn.cancer.org/discussion/320841/tips-for-surgery-and-after/p1 for more information.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    edited June 2023 #7

    I had a total hysterectomy, laparascopically, at age 57. I had already been through menopause, had had no menses since about age 46, I think. I had no hot flashes afterwards, and once I'd healed up from surgery, sex was unaffected - same as it had been beforehand. As others have said, it was by far the easiest part of the cancer treatment. I would recommend accepting the hysterectomy, and move on without fear of GYN cancer.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #8

    Dear D2023,

    I’m so glad to hear that you’ve decided to have a hysterectomy. I know it’s seems like a big thing to face, but I completely agree with my friends advice here. I, too desperately wish I’d had some reason to get a hysterectomy long before I had cancer. There’s no cancer on either side of my family….and definitely not uterine cancer…but then again, every woman in my family had a reason to have a hysterectomy before they were about 50, so no one but me had the chance to get it. I’m still shocked today that I had cancer and still have to worry about it…..forever….

    My friends are right that getting over the surgery requires some time, but it beats the heck out of cancer treatments and living with the fear of its return.

    I wish you the best of luck. I think you’ll be just fine!

    😎, A

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #9

    D2023, so glad that you see this is such a supportive group.

    A diagnosis (dx) is overwhelming. So glad you found a doctor who listened to you - that makes such a world of difference, and have found your answers. There is lots of good advice and cmb had them pinned to the top of the Uterine board on tips on surgery recovery and all.

    Please take a breath and don't hesitate to reach out with questions.

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited June 2023 #10

    I was in a similar situation in the fall of 2021, my results came back as precancerous. I was also terrified and looking for every possible way to not have the surgery! I ended up getting 2 more reads on my pathology, this came back as cancer grade 1. It's always a good idea to have another set of eyes to see what else may be found. Recovery really depends on many factors such as the type of hysterectomy etc.. but I have read about women in not great health doing amazing afterwards and those who were in great shape doing too much and it slowed down the healing time. The best advice I got was to have grace on myself and know that healing is not linear. Be kind to yourself and get plenty of rest with tolerable amounts of walking in the initial couple months.

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