Vaginal estrogen and its alternatives

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tndmbkgrl
tndmbkgrl Member Posts: 6 Member
edited April 11 in Uterine/Endometrial Cancer #1

Hello! This is my first post. I am in my 60's and had stage 1a, grade 1 endometriod adenocarcinoma, and am currently 8 weeks post op recovering from total hysterectomy. Nothing found in lymph nodes, so no further treatment. My doc told me that 95% of endometriod cancer has estrogen receptors, but unfortunately I don't know if my particular cancer is in that 95% or not. I am going to ask him if there is any chance to find out so many weeks later. My conundrum is whether to go back to using vaginal estrogen (estradiol/estriol). If I can find out that the cancer was not estrogen driven, then I may go ahead and do that. But despite my gyn onc, my obgyn, and my other practitioner who all she does is hormones saying it's fine to restart the estrogen suppositories, I am hesitant. I have buried my nose in Pub Med for hours and cannot find any studies on recurrence rate on patients using vaginal estrogen post hysterectomy/endometrial cancer. I found a good 2019 retrospective study that overall concluded that vaginal estrogen does not cause more incidences of endometrial cancer or hyperplasia than women not using it. That is likely one of the papers that docs cite when saying it is safe in low doses. But for people like us, who already have had cancer, I can't find anything. Has anyone ever found any research papers touching on this subject? And if you are not using vaginal estrogen, what have you found, if anything, that helps with vaginal atrophy and dryness? There are studies supporting the use of hyaluronic acid in combo with vitamin E and vitamin A, and I have used a compounded cream with those but with estriol also included. Vitamin E is a phytoestrogen and there are studies showing that in differing doses it can be cancer protective or the opposite. And there are no long term studies on safety on using ir or hyaluronic acid. So I am thoroughly confused what to do here. I'm down to praying that I can find out that my cancer is in the 5% and likely was not caused by my vaginal HRT I was using! Thanks for any thoughts on this.

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,370 Member
    #2
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    Hope you are recovering well and happy to hear that no treatment is required.

    They should be able to test, do a complete assay, on your cancer. You will want to know if it is HER positive, negative, if it is dMMR, pMMR, P53, POLE, etc…

    While I can never do any hormones as it would feed the cancer I had, that is not the case for all. I would ask the doc about doing the genetic tests - it can always come in handy - and asking them your questions.

  • tndmbkgrl
    tndmbkgrl Member Posts: 6 Member
    #3
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    https://csn.cancer.org/discussion/comment/1714473#Comment_1714473

    Thank you so much for the reply. This is great info. I took a look at my path report again and see that it shows p53 as "weak wild type" under the immunohistochemistry section. And under the biomarkers section it has the below. Nothing about HER or POLE in the report. I have since done some reading about P53 and it sounds as though as long as it isn't a mutant expression, that is good. I will definitely talk to my doc though. Do you happen to know what biomarker or immunohistochemistry result tells you if the tumor is estrogen driven?

    Nuclear MLH1 Expression: Intact

    Nuclear PMS2 Expression: Intact

    Nuclear MSH2 Expression: Intact

    Nuclear MSH6 Expression: Intact

    Immunohistochemistry (IHC) Interpretation for Mismatch Repair (MMR) Proteins: No loss of nuclear expression of MMR proteins: low probability of microsatellite instability-high (MSI-H) phenotype

    p53 Status: Normal expression (wild type)

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,370 Member
    #4
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    hmmm….not sure I know, but I would ask for explanations in plain English. I don't know if anyone else is familiar with those, I have been swamped all day and no chance to look anything up, but again, I would make them tell you.

    As for estrogen driven, my cancer was uterine papilary serous carcinoma (UPSC) and feeds on hormones. It is an agressive, Type 2, kind. Yours is Type 1 so definitely worth investigation.

    Note - there are some EXTREMELY well-read women and family members on this page. They may chime in with more information, and if I am wrong, I am open to all they have to say.

  • tndmbkgrl
    tndmbkgrl Member Posts: 6 Member
    #5
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    https://csn.cancer.org/discussion/comment/1714488#Comment_1714488

    I actually just fired off an email to my gyn onc's nurse right before I saw this new reply of yours. :) I think I have figured out that if a tumor has estrogen receptors, it is often referred to as ER+. I don't see that anywhere on my path report, so I asked the nurse if it is normally there if the cancer is ER+ or not. And how can we figure out what mine is. Tomorrow, I am going to talk to my compounding pharmacy about the hyaluronic acid+Vit A+Vit E combo without estrogen and see if they have done that with good results for women who can't use vag estrogen. I would love to hear what other women use that works well. I do know that what works for someone might not work for someone else.

  • MoeKay
    MoeKay Member Posts: 477 Member
    #6
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    In case you haven't already seen this, here (in quotes) is what the Cleveland Clinic has to say:

    "How are estrogen-dependent cancers diagnosed?

    Your healthcare provider sends tissue samples from a tumor biopsy to a lab. The lab tests the cells in the samples for hormone receptors.

    A hormone receptor-positive (HR+) result means estrogen, progesterone
    or both hormones fuel cancer growth."

    Here's a link to the entire article on estrogen-dependent cancers: https://my.clevelandclinic.org/health/diseases/10312-estrogen-dependent-cancers

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #7
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    https://csn.cancer.org/discussion/comment/1714488#Comment_1714488

    Hi No Time,

    If I remember correctly, UPSC is not hormone driven. Type 1, endometrioid, is hormone driven, type 2 nonendometrioid is not. Mine was UPSC, grade 3 type 2, p53 mutation Her2 negative. A Her2 positive status might be hormone driven. It is important to check that out.

    I have been using the estrogen cream for almost three years, as prescribed by my uro-gynocologist that I was seeing for stress incontinence and other issues. As I was UPSC, (uterine papillary serous carcinoma) with Her2 negative I was allowed to use the cream. It has helped greatly, making internal exams bearable, and cured my vaginal dryness and irritation. I do not ever have UTI's but I know many women are plagued by them and using the estrogen cream really helps in preventing them. I had months of pelvic floor therapy for the stress incontinence and it did not help. The fact that I had brachytherapy eliminated me from having any surgical procedures to fix the incontinence as irradiated tissues do not do well with those procedures.

    At any rate, ladies, you have to confirm with your oncologist your full genomic status and what they will recommend. The cream is quite expensive, with my insurance it was $225 a tube, so I get mine not using my insurance from Costco using Good RX and it is $37.00.

    Denise

  • tndmbkgrl
    tndmbkgrl Member Posts: 6 Member
    #8
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    https://csn.cancer.org/discussion/comment/1714498#Comment_1714498

    Thank you for the link!

  • tndmbkgrl
    tndmbkgrl Member Posts: 6 Member
    #9
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    @BluebirdOne thank you for this reply. It's helpful info. I am working on trying to get more info from the pathologists. And I agree that estrogen cream, if you can use it, is fantastic. It was super helpful to me for many years post-menopause.

  • tndmbkgrl
    tndmbkgrl Member Posts: 6 Member
    #10
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    I just found out that my gyn oncology office doesn't normally order the tests to see if a stage 1a cancer is hormone receptive. My doc's nurse forwarded my request for it to my doc, so I am hoping he will order it.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,370 Member
    #11
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    https://csn.cancer.org/discussion/comment/1714507#Comment_1714507

    Thanks, Denise. I remember being told this, and during radiation had come across and article while waiting for my treatment, that even said how the body processes soy as hormones and intentionally avoid it. Granted the highly processed food, including soy protein isolate, is in so much food I have been reading quiet a few labels for year. Something to said for "clean" food. However, with all that said, I can't remember who told me this, maybe my oncologist, but it is worth me checking in on that.

    Thank you! I certainly don't want to steer anyone in the wrong direction. Always worth looking in to things.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #12
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    https://csn.cancer.org/discussion/comment/1714559#Comment_1714559

    No worries, Ellen. When I was dx almost 6 years ago they did minimal genomic testing because the treatments had not been fully developed like today i.e. Keytruda etc. Now it is common place to do so. I only remember it because the doctors had a conversation with me about it. They wanted to be sure my pathology only had one type of uterine cancer, just UPSC, and not a mix. Also they were checking my Her2 status which I assume is another determining point.

    The cream is only by prescription so the doctors or PA are pretty careful whom they prescribe it for to ensure their status. My GO did not recommend this for me, only the urogynecologist, which I thought was pretty strange. My dx was vaginal atrophy and stress incontinence.

    Also I found this: https://www.ucihealth.org/blog/2019/03/estrogen-therapy It talks a bit about the study and it does pertain to endometrial cancers as well.

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