Hormone therapy for stage 1b?

Piniki
Piniki Member Posts: 1
in Uterine/Endometrial Cancer #1

Hi,

I am new here. About two weeks ago, I was diagnosed with stage 1 endometrial adenocarcinoma after a biopsy.  My MRI showed myometrium invasion less than 50% so that puts me at stage 1b. my oncologist started me on hormone therapy (160mg megace) prior to the MRI, and she warned me that if the scan shows greater than 1A, the megace will be less effective and may simply not work.  I'm 32, just married 2.5 months ago, and we were hoping to have biological kids. I experienced about 14 months of horrendously heavy, abnormal bleeding, and went to many doctors (including e.r.) many times, before they found the cancer so it is extra frustrating it is this advanced and took so long to find.

Has anyone here had or heard of successful hormone therapy with stage 1b? I can only find studies or comments regarding stage 1A.

In addition to the megace, I have radically changed my diet. No sugar, no dairy, all organic vegetables, fruits, legumes, and very occasional eggs (I've been vegetarian for 17 years so no meat either). I've been green juicing almost nightly. I'm working out on the elliptical 30 minutes a day. I'm trying acupuncture. Any other tips to try to help fight this thing without a hysterectomy?

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #2
    Piniki, I am sorry to hear

    Piniki, I am sorry to hear this.  Are you working with a gynecologic oncologist?  This is who you really want - someone who specializes in treating cancers which are gynecologic in nature.  They have the specialy training to help you fight this beast. 

    I am sure one of the other lovely ladies here will chime in if this is one of the agressive cancers or the 'typical garden variety' types.  I do think you are a perfect example that sadly, this disease can hit at any time.  I'm so sorry.

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    #3
    Early stage disease

    I was diagnosed with Stage IC, Grade 2 endometrial adenocarcinoma in 2005 at age 51.  I can't comment on the urge to have children complicating your treatment decision; that must be an excruciating decision dynamic.  What I can say is that, as far as I know, the frontline treatment for uterine cancer is surgery.  I believe you will find in research that only those with early stage low grade cancers are offered the possibility of "cure" and then only with surgery.  Despite surgery and external radiation for my early stage, low grade cancer, and being assured I was "cured," I am on my second recurrence.  At the first recurrerence, I received more external radiation and I started on high dose progesterone therapy (I was on 400 mg of Provera (the alternative to Megace that apparently is used outside the USA and I was overseas at the time)).  I enjoyed a 5-year remission.  In November 2016, I was diagnosed with a second recurrence in my lungs.  I am nearing the end of chemotherapy and the mid-point CT showed effective treatment with Carboplatin/Taxol. So, my point is that women do survive this disease for years with various treatments but I don't recall a woman on this board who hasn't had surgery as a frontline treatment.  There is one woman who is a long-time survivor and a champion of Metformin, but I believe she, also, had surgery.  I would imagine you have been urged to have surgery.  If the Megace shows no impact after a few months, I would think the gyne-oncologist will urge surgery again.   Good luck with the Megace and managing your disease.  Hopefully, others with our cancer type will post with their stories.  Best wishes.  Oldbeauty

  • MoeKay
    MoeKay Member Posts: 495 Member
    #4
    I'm confused

    Hi Piniki,

    Is your doctor telling you that your MRI indicates myometrial invasion that would categorize your endometrial cancer as stage 1b at this point?  I'm confused about your post, because you state that the MRI shows tumor invasion of less than half of the myometrium, but then you go on to say "that puts me at stage 1b," which is not correct according to the staging guidelines.  See:  https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/staging.html.  Myometrial invasion of less than 50% is categorized as stage 1a, not 1b.  However, I think it's also important to remember that endometrial cancer is a surgically-staged disease, meaning that accurate staging cannot be completed until after hysterectomy, when the uterus, lymph nodes, ovaries, tubes, and any other tissue removed during surgery are analyzed by the pathologist. 

    In addition, while you don't mention how aggressive the cells were found to be on endometrial biopsy, I'm assuming that your gynecologic oncologist (if you are seeing one), feels that your tumor is not aggressive and thus is appropriate to be treated with hormone therapy?  If you are not currently under the care of a gynecologic oncologist, I would strongly recommend that you schedule an appointment with one right away. 

    Everyone I know who has been diagnosed with endometrial cancer has had surgery as a first treatment step, so I can't help you on the hormone therapy issue. 

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #5
    Piniki, I have been hesitant

    Piniki, I have been hesitant to respond because I can't "walk in your shoes" with the desire to have children. And, I didn't want to say something to hurt your feelings. Like the others have said, I also believe the first line of defense against this cancer is surgery. I urge you to see a gyn oncologist and follow their advice. This cancer can have devistating effects if it is not treated aggressively.  I agree wit MoeKay that uterine cancer is staged after surgery. I don't understand how you could get a proper staging without all female parts being tested including lymph nodes.

    Welcome to the board. I'm so sorry you had to find us. And, I hope you get the answers you need to make a decision that works for you. Please come back and ask any and all questions. The ladies here are very supportive, kind and caring.

    Love and Hugs,

    Cindi

  • CHICKEN LITTLE
    CHICKEN LITTLE Member Posts: 1
    #6
    Piniki, I am sorry

    Hi Piniki, 

    I see you are seeing an oncologist, is this a gyn oncologist? If not, find one, and go see them. Don't be afraid to search for the one that suits you best, and listens to you either. (I searched for one that would treat me as a person for months, and not just a uterus with cancer). The standard of care is that surgery is the best fix for the problem. That is what they will want to do. This is a slow growing cancer, but it is still a cancer.  The only way to stage correctly is after surgical pathology is done.  They can guess by what they see on CT scans or MRI's, but that is not as accurate.  

    If you want kids, I would find a fertility specialist also, and see what your options are about pregnancy. You might think about harvesting eggs, but I don't know if they would do with you on Megace, since it is teratogenic.  Again, talk to a fertility person as soon as you can is what I would suggest. Luckily, most endometrial cancers are slower growing, so you have a little time to make decsions. 

    I am sorry you are having to make these decisions, and deal with this. I am sorry they did not catch it quickly, and that you lost valuable time from a fertility point of view. 

    I wish you luck. 

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