38 yo w early menopause from chemo. Can I still get HRT?

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Fukcancer
Fukcancer Member Posts: 32

I was diagnosed with IDC stage 1 ER+/PR+ HER2- breast cancer at 36 years old. I had a lumpectomy with clear margins and no cancer in my lymph nodes. My oncotype score was 27 so all oncololgysts that I consulted with recommended chemo.

I finished 6 rounds of CMF chemo in April of 2019. I'm now 38 years old. I took Lupron during chemo to reduce the chance of permanent chemopause. I had all of the horrible side effects of menopause, every single one of them. My period came back in December, 8 months after chemo ended and many of my menopausal side effects went away. However, my periods were extremely irregular for 6 months. I just had my hormones checked again about a month ago and they are back at menopausal levels and I haven't had another period since June. Hot flashes, night sweats, dry vagina, brain fog have all resumed. After consulting with a fertility doctor, I only have 1-2 visible follicles.

The menopausal side effects have been bad. I've suffered from hot flashes, night sweats, brain fog, insomnia, weight gain, joint pain, sexual dysfunction/no libido, and dry vagina, and aging skin. I AM MISERABLE!! I am only 38 years old, yet I feel like I'm 60.

Based on everything I'm reading, I'm in perimenopause and could even very well be in permanent menopause. I have lost hope that my ovaries will recover since it's been so long after chemo. My oncologist thinks it's unlikely too. I'm devastated.


Is HRT a possibility for me? How do I find a doctor willing to give it to me? I do not want to keep living like this. I'm too young. I need estrogen at 38 years old! There are so many long term risks of premature ovarian failure. I am biologically aging well beyond my natural age. Doctors certainly didn't tell me this before I had chemo. I regret doing chemo every day.

Comments

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    I don't have any answers, but I just wanted to say that I hope you find a good solution, and that this gets better for you.

    Cancer sucks at any age, but it's especially bad when we're young.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    I am so sorry that you are going through this. But to your question, "Is HRT a possibility for me?", since you had an ER+ cancer, unfortunately I think the answer is "No". My MO and my Gyne were both very clear that with an ER+ cancer, neither would prescribe even a topical estrogen. HRT, an ingested estrogen, is completely contraindicated.

    Could you find someone who would prescribe it? Probably. And you could take it, recognizing that you might be negating the risk reduction benefit you received from chemo and putting yourself at significant risk of a new primary breast cancer.

    I know that's not the answer you want to hear - and I'm certainly not an expert on this; I know only what my doctors told me and what I've read in posts from other members here. What you need is a doctor who takes your side effects and quality of life issues seriously, and who works with you to come up with solutions. What have your MO and Gyne said?

    Are you on Tamoxifen? Could some of the side effects be from this?




  • Fukcancer
    Fukcancer Member Posts: 32
    edited August 2020

    Beesie, I am not on tamoxifen. My oncologist says I don't need it bc my estrogen levels are way below even a normal menopausal level. Chemo has destroyed my natural hormones.


    I realize I might need to get HRT on the black market. I don't care. I don't want to live like this

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    Fukcancer, I think you should start "doctor shopping" until you find someone who will actually help you feel better. Please don't look into black market options. :-(

    As I live in this cancer-land life longer, I realize that any treatments or contraindications are really just suggestions based on what science knows right now. There are no guarantees with this disease, even if we follow treatment protocols to perfection.

    That being said, we are never free from cause and effect. There is a risk with hormones, but that might not be as important as the quality of the life that you still need to live. If you feel that you need hormones to live a normal life, then that could be a reasonable decision for you.

  • mightlybird01
    mightlybird01 Member Posts: 217
    edited August 2020

    I agree with what others have said, look for a Dr. that is willing to work with you. For example, you could just use HRT for a few years until you feel better and then very slowly wean yourself off as you would naturally reach menopause age. You could see if even just lifting your estrogen a little would make a difference. It is your life and your body.

    Also, I read that some anti-depressins make a big difference for the hot flushes. For the vaginal dryness there are some solutions too other than hormones, but I guess none of them are as good as being on HRT.


    I myself am now 10 months PFC and about 2 years into menopause and I must say I am getting used to the symptoms. It takes a while and it is certainly easier to accept at 50 than 38.


  • havefaithtoday
    havefaithtoday Member Posts: 100
    edited August 2020

    I totally feel your pain. Although I am older too (50), but chemo put me into menopause in Feb this year and I've felt horrible as well. All the side effects you mentioned I have too. I've been doing a lot of research about Bioidentical HRT and how Estriol (delivered transdermaly) is actually supposed to reduce your risk for breast cancer. This completely contradicts everything the conventional Drs recommend. So I'm so confused. But the type of Drs that would be more knowledgeable and maybe on board with that would be Naturopathic Drs. I would certainly feel more comfortable working with them than going on the black market. Feel free to PM me with any questions on what I've found or even if you want to vent. I completely understand.

  • beeline
    beeline Member Posts: 308
    edited August 2020

    Fukcancer, I am a few years older than you, but have gone through the same thing with early menopause plus I'm on an AI which super amplifies the anti-estrogen effects. I agree with what has been said above about finding a dr who will work with you. I now take effexor and have no more hot flashes or insomnia. It helps with the joint pain, too. My MO prescribed an estrogen cream that makes a big difference for the dry vag effects. There is no doubt it's fucking depressing. I really hate having to take another drug to be able to take the drug that will hopefully keep me alive. And I would give just about anything to have my libido back! But I wouldn't give my life, so here we are. Wishing the best to you. I hope you find some relief.

  • trinigirl50
    trinigirl50 Member Posts: 343
    edited August 2020

    HRT (estrogen and progestin combo) can cause ILC cancer. It definitely either caused or grew my tumour. In 8 months I ended up with 6x6x4 area of breast cancer. I know it was the HRT because I could see my breast growing in front of my very eyes and it was only until the left nipple flattened that I got a Dr to do biopsy (all scans and mammograms were clear -ILC grows in strands so can be invisible in scans). Be very careful if you decide to go down that road.

  • WC3
    WC3 Member Posts: 1,540
    edited August 2020

    Havefaithtoday:

    Some compounds reduce the risk of developing cancer in those who do not have cancer, but can increase the risk of recurrence in those who have had cancer. Cancer cells can remain dormant and undetectable in the body for decades. Those who had ER+ breast cancer risk awakening any dormat cells should they take estrogen.

  • Still-me40
    Still-me40 Member Posts: 17
    edited August 2020

    I was diagnosed at 40 and have been in chemically induced menopause for a year now. It really, really sucks! I complain bitterly to my oncologist about the side effects and I’m considering taking a “pill holiday” where I go off the pills for a month or two to see if I feel better. But I’m scared because I’m a high risk for recurrence. And I want to live. But I want to live well too!!

    I don’t have any advice for you but I wanted to say you are not alone in feeling the way you do.

  • havefaithtoday
    havefaithtoday Member Posts: 100
    edited August 2020

    WC3, yes, I've often wondered about that. It's so confusing. So much mixed information out there. I just want to make the very best decisions to protect myself from a future recurrence. And I'd really like to have some degree of quality of life back.

  • ErenTo
    ErenTo Member Posts: 343
    edited August 2020

    "My oncologist says I don't need it bc my estrogen levels are way below even a normal menopausal level."

    I think you need a second opinion or a new oncologist. This is not how anti-hormonals work for breast cancer. Menopausal women still get ER+ breast cancer or go on tamoxifen to reduce recurrence risk, because our bodies still produce estrogen outside of ovaries, it's the outside-ovaries estrogen that menopausal women need to suppress (AI) or block (tamoxifen). For pre-meno women it's both sources that need blocking/suppression.

  • Fukcancer
    Fukcancer Member Posts: 32
    edited August 2020

    with all due respect, I think the “gold standard” hormonal treatment for early stage breast cancer is overkill. I was Stage 1 with no lymph node involvement. I already suffered through chemo with no evidence that cancer cells escaped into my body after surgery. My QOL is already suffering bc my ovaries were damaged during chemo. Adding more hormonal therapy to what I’m going through now would make my side effects unbearable. I didn’t survive an early stage cancer to live in an 80 year olds body.

  • moth
    moth Member Posts: 4,800
    edited August 2020

    I don't think it's overkill when ~30% of early stagers go on to develop metastatic disease (which is terminal). Every treatment is trying to reduce the individual's personal risk but the fact is that we don't know who will have a recurrence and who won't.

    For many surgery alone is curative but we still aren't sure which group anyone will fall into.

    However, each person has to make a decision about quality of life and what they can tolerate; nobody else can make that calculation.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2020

    Ultimately we all make out own decisions regarding treatments. BTW, how do you kno there is no evidence of cancer cells in your body? Breast cancer is not detectable in the blood and even with no lymph node involvement, bc cells can and do travel, undetected, through the bloodstream, take up residence somewhere and “awake” in their own time.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    Ditto to what moth said.

    And to add, treatment standards are established to address the average patient. On average, 30% of early stagers will go on to develop metastatic breast cancer. Even for the most favorable diagnoses, the risk of mets with only surgery will likely be around 10%. Based on this, the treatment protocol makes sense. But none of us are average, which is why treatment discussions need to be individualized. The starting point should be the treatment standard (endocrine therapy for early stage invasive cancer, for example) but then individual risk levels and other individual factors come into play.

    Fukcancer, have you discussed with your MO what your risk of metastastis is after chemo, either with or without Tamoxifen? This is the discussion that everyone, or at least those who are Stage I, should have to make their decision on whether or not to try endocrine therapy. The difference in metastatic risk, weighted against quality-of-life concerns, personalize this decision for each of us. For you, this benefit versus risk assessment might make Tamoxifen overkill, but for someone else with the exact same diagnosis, but who doesn't have same quality-of-life issues or who views metastatic risk differently than you, it might be an easy decision to try Tamoxifen.





  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2020

    In 2008, I got endometrial cancer, and according to my gyn, it was because of my high hormone levels - I was 58 and still churning them out with no signs of menopause. I had a very thorough hysterectomy, leaving only a vaginal tube. No ovaries, no uterus, no cervix, basically neutered. Ten years later, I got breast cancer, and my ER was +99 and PR +97. Just because you THINK your hormone levels are low doesn't mean they are. I took BC pills for ONE YEAR when I was 20, and I never took HRT after the hysterectomy. My body just produces hormones at a high level no matter what.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2020

    A story. My dad went for a colonoscopy. Found a few cancerous polyps. Removed right now. No further treatment. Thought he was clear. But a rogue cell escaped, floated around for 5 years before setting up in his liver. He died 6 months later.

    I echo what was said above, there is NO test for rogue cells. Think hard about your treatments.

  • VioletKali
    VioletKali Member Posts: 243
    edited August 2020

    Hello. I was diagnosed at age 31, just 3 weeks shy of my 32nd birthday. I am ER + PR+ her2+ grade 3. 0 nodes.

    I legit quit chemo after 4 rounds, then quit herceptin later due to reduced LVEF that I was able to feel even though it was slight. I refused anti hormonal therapies.

    I am erring on the side of QOL. I am 6 years a survivor. I am okay with my choice. I saw women have every treatment possible at stage 1, but recurred anyway. I would rather do nothing and recur than be miserable and recur. Ultimately, I believe that if it is going to recur it will recur no matter what, and I refuse to suffer.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited September 2020

    I was already very unhappy with the changes peri menopause was bringing to my body when I was diagnosed at age 47. With a stage one, grade one cancer, I did only three years of tamoxifen and then refused the AI's once I became postmenopausal.
    I felt that the loss of estrogen effects all over my body were very unacceptable to my quality of life. So I started bio identical hormones prescribed by my GYN Nurse Practioner. I did have to shop around to find her. We talked about the risks and she prescribed it with the understanding that I knew that I was taking a risk.
    I use a low-dose estradiol patch and twice a week take Prometrium which is a bio identical form of progesterone. It keeps my hot flashes at bay And seems to help a bit with sleeping better. It's probably too low of a dose to completely help with vaginal atrophy, and in the past year I've developed clitoral atrophy, So now I've added vaginal hormones to the mix, hoping to reverse some of that. I've always felt that breas cancer research needs to come up with a better treatment option then depriving women of their hormones

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited September 2020

    I don’t know about HRT, but give yourself some time and some grace with all this. I was put into chemopause at 34, I’m 40 now. Menopause really sucks, but for me the symptoms have become manageable over the years. Silver lining, no period! I have started a low dose vaginal estriol suppository to help with atrophy, and it does! Hot flashes only lasted a few years. Sex drive is back to normal. Seriously. It will get better!

  • Fukcancer
    Fukcancer Member Posts: 32
    edited October 2020

    For those of you who replied that you are on hrt or bio-identical hormones, how did you find a provider who is willing to prescribe them to you? I am having a hard time finding someone who will do it. Please PM me. I am so miserable. Early menopause is ruining my life! I've already tried the E-String, Gabapentin, SSRIs, and acupuncture. My vagina is still dry, my clit has shrunk and I can't orgasm anymore. I have no sex drive and low testosterone. I still have hot flashes. My skin is dry and losing elasticity. My muscle definition is disappearing. These are NOT good enough solutions. I need hormones. I'm also scared of getting dementia! My grandma had it. She also had bad bones as she aged.

    Estrogen matters!!! Read the book.

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