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Hormontherapy choices for premenopausal women

Walden1
Walden1 Member Posts: 110

MO has given me a choice between tamoxifen and ovarian suppression injection with AI. I am 44 and was premenopausal before chemo. It's been almost two months post chemo and I haven't had a period yet. MO recommends starting with ovarian suppression + AI because it lowers reoccurance, but noted it doesn't improved overall survival. There are so many positives and negatives to each choice. Not sure now to choose.

Did some reading of credible sources that suggest the OS + AI option is not a significant benefit for all premenopausal women. Might be for some high risk women and not for the others. would love to hear what advice your MO had for hormone therapy, and why they recommend one over the other for a premenopausal women (or someone like me who's status is questionable because they had menopause from chemo).

Comments

  • meow13
    meow13 Member Posts: 1,363

    If you choose tamoxifen make sure they are checking the uterus regularly. Uterine cancer is rare and you don't want to catch it too late. My poor SIL's doctor dropped the ball she was a little older than you are, I guess the doctor thought it is so rare he wasn't checking.

    AI drugs, well I think more achy joints sometimes some unpleasant side effects. I had extreme dry eye on exemestane. It is a good thing you are er and pr positive both kinds should be effective for you.

    Good luck.

  • Cpeachymom
    Cpeachymom Member Posts: 249

    I'm actually getting ovarian suppression plus Tamoxifen, which seems to be a middle of the road option. Some of the factors were bone health, age, premenopausal, and fertility. Wasn’t entirely sure I was done having babies. It’s working and side effects are tolerable for me.

  • Lula73
    Lula73 Member Posts: 705

    The SOFT & TEXT trials just confirmed that there is a statistically significant benefit to do ovarian suppression + AI especially in node positive and/or cancers that need chemo. You are the perfect profile for ovarian suppression + AI from that aspect. Have you considered ovary removal

    Why no difference in survival? My personal position is that when they do these trials, they are looking at all cause mortality. So if you died in a car accident or from a heart attack during the study timeframe, you were still counted as one who didn't survive. This can skew the numbers especially when you consider that the average age of study participants in these trials is around 60 years old. We know that as we age more things start to go wrong...hypertension, diabetes, heart disease, etc. which put us at increased risk for death from these conditions. Additionally, a 60 year old is closer to end of life from natural causes than someone in their 30's or 40's. To me, younger women need this information and studies that are focused only on a younger subset of bc patients would be very beneficial in providing it. As a bc patient, I'd also like the data broken down to include survival stats based on death from bc or its complications not just overall survival.

    Has your MO done lab work to determine if chemo indeed made you menopausal? Just because you don't have a period doesn't necessarily mean you're in complete menopause or that the periods won't start up again given another month or 3. Sounds like your MO is covering all the bases. On SEs, doesn't matter if you choose tamoxifen or ovarian suppression with AI, both options carry very similar SE stats. The big differences are uterine cancer and blood clots with tamoxifen and bone loss potential on the AI.

    Hope this helps!

  • Mommato3
    Mommato3 Member Posts: 468

    It's possible for your periods to return up to two years after you finish chemo. Mine returned about four months after I finished Taxol. At your age, the doctor wouldn't be able to determine if you'll go back to being premenopausal until a couple years pass or your blood tests show premenopausal status. My blood work kept coming back menopausal too but it clearly changed after a while. You can't take an AI if you are premenopausal. That's why you'd need to do OS + either AI or Tamoxifen.

  • Walden1
    Walden1 Member Posts: 110

    Thanks for all your responses. I’ve been on ovarian suppression for about 6 weeks and exemestane for 2 days. So far the main side effect is the return of hot flashes. They went away after chemo, which was nice while it lasted. I also have this slight jittery feeling (the way you feel if you have too much caffeine). My skin has been dry since chemo, but is now more dry, my eyes are also very dry.

    Anyone notice their hair growth slow down? Not sure if I’m imagining this but it seems the hair on my legs and arm pits has really slowed down. Is estrogen related to hair growth?

    Good news is I’ve taken up running and my energy levels are good.

    Still often wonder if I should reconsider tam rather than examestane. Thank you for the tip on the soft/text trial. I’ve read it in great detail. Unfortunately it’s not clear to me if I am in the category of people who greatly benefit, or slightly benefit. My MO keeps saying all options are very effective so it’s up to me, but the exemestane might give me a 3-10% advantage, so try it first. In the end I decided to take her advice, although I hate the idea of becoming premenopausal before my time. Wish my MO could be more specific about my risk category, so I could stop questioning whether exemestane is worth the added side effects.

    Luna73-I was never tested to see if I was Postmenopausal after chemo. MO said I am considered premenopausal because I had a period with in the last 12 months and my periods could return,so they follow premenopausal protocols for my hormone treatment rather than test and monitor your estrogen status.

    Anyone here advised to start on tamoxifen and switch to AI when they are confirmed to be Postmenopausal ?

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I was 50 when diagnosed and still had very regular periods. Chemo stopped them and still I was considered premenopausal. My MO stated at the time that he planned for me to be on Tamoxifen for probably two years and then switch to an AI if confirmed to be menopausal then.

    I tried Tamoxifen for three months and had a lot of SE's that were not tolerable so I quit taking it. After finishing Herceptin and feeling better, I intended to try it again at a lower dose - kind of ease into it. But then I had pain months later and an US showed a very thick uterine lining and an ovarian cyst so that had to be followed. The lining continued to thicken and a D&C was recommended by my GYN. But then I had a period - 18 months after they stopped and almost 52 years old!

    No periods since (3 months) and uterine lining is back to thin. Repeat hormone levels show Estradiol is lower and FSH is higher so more indicative of menopause. MO doesn't recommend ovarian suppression for me and doesn't think removal is necessary (although he used to discuss that). I don't really want the AI's since I already have Osteopenia. Of course - I don't really want any of this.

    I'm waiting until I see my GYN to discuss the lower dose of Tamoxifen and try to figure out what to do. I feel like there's no "net" and I'm just hanging out there, but the choices suck, too.


  • Lynndoula
    Lynndoula Member Posts: 1

    I have been taking tamoxifen 20mg for a little over a year. I deal with a lot of hot flashes, weight gain of about 10 pounds and joint pain and stiffness.

    I have asked my oncologist about taking 10mg and she maintains that 20mg is the only dose/possibility. I feel like some tamoxifen would be better than no tamoxifen.... For the past four days I have cut the pill and am probably taking 15mg because it is more than half. My hot flashes have gotten better for sure. especially at night. I hate going against medical advice... but geesh... there has to be some gray area. Not everyone needs the same dose....


    brief history of my dx treatment:

    IDC stage one, ER + - dx at age 44

    lumpectomy and lymph node dissection - no positive nodes

    oncotype score of 29 so did 8 rounds of chemo AC/T

    39 rounds of radiation




  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    If you look into research on lower dose Tamoxifen then you will see that there have been some promising studies on much lower dosages being very effective. A lot of these have been in mice models and have been equivalent to 5 mg per day or 10 mg three times a week or 20 mg once a week. The reason that 20 mg daily is recommended is because that is what has been studied and proven in humans. The dose used to be even higher and even more people would not continue to take it. As with most things - higher doses lead to more SE's.

    My MO tells me that I will most likely have the same SE's on a lower dose and yet not gain the benefit of the regular dose. I also feel that some Tamoxifen (or other hormonal treatment) is better than none. And who's to say what the optimum dose for me might be? I'm pretty sensitive to most drugs.


  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    Lynn doula I have the same idc stage 1, grade 3 oncoscire 29, so I m doing 4 Taxotere and cytoxan and total 4 , but I had mastectomy! I m scared to take tamoxifen , because I m 41 only I don't want to gain weight, I don't want vaginal atrophy, I don't want hot flashes , that stupid cancer ..... I hope they can give me a lower dose ! And also don’t want to develop uterine cancer, and joint pain..

    I m not looking forward to that part of treatment!!! Is there a light at the end of tunnel

  • I was diagnosed 5 years ago when I was 41 years old.  I have taken Tamoxifen for 5 years and in my situation I have had no side effects.  Everyone is different and I know you hear mainly about the worst side effects of the drug happening to people.  There are many of us that handle it very well!!  I had my follow up with my ONC last week and have decided to continue for another 5 years.  It will give me an additional 25% benefit.

  • Walden1
    Walden1 Member Posts: 110

    Rayofsunshine-thanks for sharing your experience, I am glad to hear you have done so well. Can I ask if the oncotype was used at all in deciding to extend tamoxifen to 10 years. I know it can be a great benefit to some, but not sure how it isevaluated

  • Walden1 - I have done my own research on the benefits of going 10 years on Tamoxifen - so when I went in for my appointment I basically told her that's what I wanted to do.  I am still pre-menopausal - so we did have a conversation about if in the next 5 years I should go into menopause do I continue the Tamoxifen or go to the AI's.  She told me there is a ever so slight benefit to switch.  For me I would much rather stay on the drug I am doing well on rather than switch and potentially have joint issues.  If there was a huge benefit of switching I would consider it- but as long as I'm here on this earth I'm going for quality of life!  My Dr. and I didn't talk about oncotype at all.  I had 2 tumors tested and my scores were 9 and 12.

  • Walden1 - I have done my own research on the benefits of going 10 years on Tamoxifen - so when I went in for my appointment I basically told her that's what I wanted to do.  I am still pre-menopausal - so we did have a conversation about if in the next 5 years I should go into menopause do I continue the Tamoxifen or go to the AI's.  She told me there is a ever so slight benefit to switch.  For me I would much rather stay on the drug I am doing well on rather than switch and potentially have joint issues.  If there was a huge benefit of switching I would consider it- but as long as I'm here on this earth I'm going for quality of life!  My Dr. and I didn't talk about oncotype at all.  I had 2 tumors tested and my scores were 9 and 12.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    raysofsundhine, May I ask question about SE: when you said you didn’t have them, are there regular SE you didn’t have such fatigue insomnia mood swings , or ypu specifically didn’t develop menopausal SE such hot flushes dry vaginsl walls and etc?

    I m starting on tamoxifen and I m 41 married , so would like to know! Thank you very much!!!

    I also was recommended to do 10 years in Boston

  • Rhuny
    Rhuny Member Posts: 7

    I have been on Tamoxifen for two years with no side effects. I was dx at 39 and had a local recurrence this year at 42 so maybe that’s my side effect. Ha

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    Rhuny, sorry to hear about your recurrence- is it new cancer?

    You had lumpectomy and then mastectomy? And tamoxifen didn’t protect you, did you take 20 mg?

    I just got mine pills from pharmacy and scared to take it!

    Did it thinned your hair? Thsnks

  • Bostoniangal25 - I have been very blessed that I have not had any side effects at all.  I hope my next 5 years is just as smooth.  Rhuny, I am sorry to hear about your reoccurrence.  Did they catch it in your regular check up?

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    thanks Rayofdundhine!!!! Wish you the same!!

  • peregrinelady
    peregrinelady Member Posts: 416

    For those of you who are wondering about the benefit of extending antihormonals past 5 years, there is a test called BCI (breast cancer index) that will show (based on your tumor) the benefits of continuing therapy

  • Rhuny
    Rhuny Member Posts: 7

    Bostoniangal25- it was on the scar line and the histology was the same. Luckily there was nothing else in any of my breast tissue after the mastectomy. I did the Mammaprint test and came back low risk thank goodness. I did not have hair thinning on Tamoxifen. I didn’t notice anything and had normal periods... I did recur while on Tamoxifen which is concerning and that is why I am now on Zoladex injections with Tamoxifen. Eventually I will switch to an AI, but my Dr wants to switch my medications slowly so I have less side effects. The Zoladex makes my heart rate increase and causes insomnia. I’m hoping this passes!

  • Rhuny
    Rhuny Member Posts: 7

    raysofsunshine07- thank you and I found the lump both times! The recurrence was a tiny knot at the end of my lumpectomy scar. The radiologist said it looked like scar tissue but I insisted on a biopsy so I could sleep! Sure enough, it was a local recurrence. Exact same cancer. So annoying. I immediately opted for a bilateral mastectomy and am so glad. I’m still in the tissue expander stage, but it hasn’t been that difficult of a recovery.

  • Rhuny
    Rhuny Member Posts: 7

    bostoniangal25- I take 20mg Tamoxifen. Don’t worry about SE. I exercise 6 days a week and have never had any issues with joint paint or anything crazy. My hair is exactly the same:)

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    Rhuny, finally I read your post here 😅!!! Thsnks for pm me!!! It was so much clever to insist on biopsy!!!

    I hope your s e on xoladex will ease!!!

    I m scared now!!! I had a unilateral mastectomy but the hence no one is sleeping chillin or relaxed here we all worried about recurrence..