AI vs tamoxifen

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CAMommy
CAMommy Member Posts: 437

Hi everyone,

I'm new on my journey here. Since my biopsy showed 95% positive for estrogen I am pretty sure I'll be recommended to take some kind of hormonal therapy. I had a complete hysterectomy with ovaries removed 2 years ago (I'm 46 now so this was at 44). I was on a low dose of estrogen for almost 2 years. When I got my pathology report I stopped estrogen. Currently my DX is DCIS, intermediate to high grade. I have my lumpectomy on July 28

I know from my readings that AI are given to post menopausal women. But I don't like what I'm reading. While there is a decrease in reoccurance using an AI over tamoxifen there is a higher risk of death, most likely due to coronary vascular disease.

http://www.medscape.com/viewarticle/756567

What is the point of being cancer free if you die of a heart attack instead.

I'll of course talk to the MO about this. I already have borderline high cholesterol. And now that I'm not on my estrogen my blood pressure is a bit higher (although still normal at this point).

Is it ok for post menopausal women to take tamoxifen instead of AI? I am also worried about bone health. From what I read tamoxifen helps lower CVD risk and increase bone density. Since I have had almost no ill effects from stopping my estrogen patch, my surgeon said I would most likely have not side effects from tamoxifen.

Thoughts?

Comments

  • 123JustMe
    123JustMe Member Posts: 385
    edited June 2015
    Great question! I will be having this discussion once my genetic testing is in with my MO. There is a strong family history of coronary artery disease on both my mom and dad's sides. I definitely do not want to die from BC or CAD if I can help it.
  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited June 2015

    I am 58 and still producing more estrogen than allowed/advised for an AI. Initially I was quite distressed because of the recurrence numbers but I have been made to see that there are some good things about Tamox like lowered cholesterol and better bone density.

    So the current plan is to start with T and see how I tolerate it. Then move to AI later? It seems it's my only choice since ovarian suppression with AIs in the recent trials only benefits much younger women (35-ish) which is great because our younger sisters needed a break!

    I suppose I'm not really answering your question. They are both effective drugs but what you can tolerate will play into the mix.

    Good luck.

  • doxie
    doxie Member Posts: 1,455
    edited June 2015

    While there is a decrease in reoccurance using an AI over tamoxifen there is a higher risk of death, most likely due to coronary vascular disease.

    Data interpretation is always tricky. Women on AIs in general are much older than those on Tamoxifen. Since CVD is at the top of reasons women die as they age, it's not a surprising finding. Also, post meno women also generally have less aggressive BC, so will die of something else. Younger women generally have more aggressive BC, so are at a greater risk of dying of BC. Now if the research found that women on AIs die of BC more often than on Tamoxifen, that would be noteworthy.


  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2015

    i Need To Discuss With My MO. She keeps suggesting she wants to do ovarian supression to make me menopausal and then give me an AI. I don't know why I wouldn't do 5 of tamoxifen and then see if I'm ready for an A I. It's very confusing when you are premenopausal what the right thing to do is.

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited July 2015

    Well I tried letrozole/femara because it is supposedly better for my type of BC which is Lobular as you can see from my stats. This drug made me so ill, not just the aches and pains and feeling like an old lady but it was what it did to my heart, blood pressure and cholesterol that really worried me. So I had to stop taking it and now am on Tamoxifen. I am finding Tamoxifen much easier to tolerate although I do have a very sore elbow at the moment - just can't seem to win.

  • ChicagoReader
    ChicagoReader Member Posts: 110
    edited July 2015


    CAMommy:  I couldn't open the article you linked to in Medscape because I don't have an account there, so I couldn't tell if it's the same as this one:  http://www.breastcancer.org/research-news/arimidex-reduces-dcis-recurrence-risk-more  If so, my apologies.

    If not, you may want to check out that link.  It's a very recent (June 2015) study focusing on Tamoxifen vs. AI in DCIS patients.  It concludes that AI does a better job at reducing the risk of DCIS recurrence for women under 60.

    I'm facing a similar decision and will be discussing it with my MO soon.  I just met with my BS last Thursday and she thought an AI might be a good idea for me.  Although I have a lot more to learn on this issue, I'm very interested because the side effects of Tamoxifen (strokes, blood clots, uterine cancer) scare me a lot more than the main side effects of AIs (osteoporosis and joint pain).

     

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited July 2015

    I am on tamoxifen and now post menopausal. The plan is 5 years of tamoxifen and 5 years of an AI. I asked my MO if I could just stay on tamoxifen for 10 years since I really have no side effects except some hot flashes. She said I could stay on tamoxifen for 10 years if I wanted, but also pointed out it (though rare) can cause blood clots and uterine cancer. We can't win can we?

    Nancy

  • besa
    besa Member Posts: 1,088
    edited July 2015

    l made the decision not to switch from tamoxifen to an AI. My MO was OK with my decision. I had a low oncotype dx score, tolerated tamoxifen well and have a family history of osteoperosis.

  • CAMommy
    CAMommy Member Posts: 437
    edited July 2015

    I met with my MO today, he felt the new research is too new to warrant using AI's for DCIS. He wants me on tamoxifen. I am ok with that because I'm on the young side for post menopause (46) having had hysterectomy/BSO 2 years ago and heart and bone health are important to me. He said in 2-3 more years we will have more research and that might warrant a change then.

    I'm fortunate I guess, not uterus means no risk of uterine cancer from it. And the risk of blood clots is lower on tamoxifen then it was when I was on my estrogen patch.

  • grammakathy
    grammakathy Member Posts: 407
    edited July 2015
    I'm older than you - 63 at diagnosis, and now 65. I also had IDC. I started with Arimidex in Dec 2013 and had a hard time with the side effects (some leveled off after three months but the sleeplessness and capilaritis continued). My MO switched me to Tamoxifen in Dec 2014 and it has been a breeze. I do feel I gave up a little security in switching but it is wonderful to sleep once again. We each handle these drugs differently and you won't know how they will affect you until you try them. Best wishes.
  • mike3121
    mike3121 Member Posts: 410
    edited July 2015

    Wife hates blogs/forums - had bad experiences with them so she won't comment. I know, I know Mr/Ms Moderator this forum is for BC women only but I just wanted to show AL's don't work for everyone.

    My wife, (now age 68) back in Dec of 2012 was diagnosed with Stage 4 ER+ breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be.

    A little over a year later, Nov 2014, the aromasin stopped working. Cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She had 4 infusions of AC, her lifetimes amount. No taxol as she almost died from it earlier. The before chemo PET scan showed an SUV of 5.9 of the triple negative. After the chemo it was 2.2 with 1 being the base. She's got 3 more weeks of her 7 weeks of rads.

    The point is aromasin only worked a little over a year for her. Question, how many types of estrogen blockers are their? How many are left for my wife use before the situation get's real scary?

    She has two cancers now, one ER+ PR+ HER2- and another metaplastic triple negative.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited July 2015

    CAmommy, yes, some women (like me) choose to take tamoxifen instead of AIs, even though we are post-meno. FWIW, AIs are relatively new (10-15 years) and previously even post-meno patients took tamox. I think it's the issue of balancing trade-offs: perceived benefits vs. risks.


    "And the risk of blood clots is lower on tamoxifen then it was when I was on my estrogen patch."

    That's interesting. Thanks for sharing.

  • rozem
    rozem Member Posts: 1,375
    edited July 2015

    I was on tam then had my ovaries suppressed and tried an AI. Did Aromasin then Femara. I couldnt tolerate either. Vertigo, muscle and joint pain to the point where I could barely walk. I know there is a statistical advantage but I need to be able to function. My MO said she feels comfortable with me staying on the tamox. She said it's just important to stay on something

  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    Rozem, are you still doing OS? My MO said I should switch to OS + AI after my period came back in March. I had wanted to go this route in the beginning but MO said no initially because I was in chemopause. That was even after the SOFT trial came out. Then she changed her mind when I became premenopausal again. I have to admit I enjoyed having estrogen in my body again. My only SEs are some stiffness in the morning and some vaginal dryness (That's where the estrogen would be nice!). I finally scheduled my ooph for September 25th. Who wants to get those crazy shots every 28 days for the next five years or so!?! Any chance they'll change their mind about OS + Tamox/AI?

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited July 2015

    I am 60; 58 at DX. On Tam since May 2014. SE's are minimal. Hot flashes, leg cramps now and then. I have osteoporosis and osteopenia, so it was an easy choice for me. MO said we may do anohter DEXA scan next yr and see how my bones are, before considering a switch. I have read that aspirin may reduce the risk of BC recurrence and also blood clots...MO agreed that is was okay to take a low dose aspirin/day. I had a hysterectomy 10 yrs ago, so the risk of uterine cancer isn't a problem. Good luck with your decision!

  • rozem
    rozem Member Posts: 1,375
    edited July 2015

    mommato. Yes still doing OS plus tam. My MO feels there is an sdvantage to having no estrogen even if you are on tam. These shots are a pain. I was a week late on my late one because I messed up the dates!!!! Im hoping to do these for another year and hopefully bybthen I will be in natural menopause

  • Professor50
    Professor50 Member Posts: 220
    edited July 2015

    rozem, how will you know if you are in "natural menopause"? My MO essentially said that now that I am on this lupron+AI, she won't be able to tell when/if I am in menopause. She implies that my only out is to have my ovaries removed. I am 51. I've have 3 shots so far. I don't find them to be a problem at all. But I otherwise, I am pretty miserable on this AI. And the next decade just seems insurmountable.

  • CAMommy
    CAMommy Member Posts: 437
    edited July 2015

    "And the risk of blood clots is lower on tamoxifen then it was when I was on my estrogen patch."

    That's interesting. Thanks for sharing.


    That's what my MO told me. :).

  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    I think the only way to know if you're in menopause would be to stop the shots and see what happens. I'm 42 so I could have another 8-10 years before I'm in natural menopause. The shots aren't that big of a deal but I don't want to go every 28 days to get one. Especially if it's for 8-10 years. I'm not even sure my insurance would cover it for that long. I can't imagine my MO will think it's ok for me to become premenopausal again in five years. By that time they may definitely say ten years on an AI

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited July 2015

    You can have a simple blood test to check if you are in menopause or not. I had Zoladex shots for about 6 months while I was on Femara/Letrozole, I gave these injections myself into my stomach. I couldn't tolerate Femara/Letrozole so I have been put on Tamoxifen and don't need those shots anymore. Silly thing is I am 54 and according to my blood tests I am not in menopause or even perimenopause. However I haven't had a period for a while? Weird but I'm not complaining.

  • CAMommy
    CAMommy Member Posts: 437
    edited July 2015

    tamoxifen can increase blood estrogen levels ( which is why it's good for bone and heart health) which can decrease fsh levels and make it hard to determine if you are truly in menopause. Even when I was on estrogen prior to this my blood profile showed non menopausal even though I have no ovaries!

    http://www.ncbi.nlm.nih.gov/pubmed/9168075

  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    Wouldn't the blood test show you're in menopause if you're getting Zoladex shots? I thought that was the point of those shots. Otherwise you'd have to stop the shot and wait to see what your blood work showed. Not sure how long that takes. I've read about some women who went into chemopause and stayed menopausal according to their blood work and then 18 months later they went back to being premenopausal.

  • rozem
    rozem Member Posts: 1,375
    edited July 2015

    yes i would stop the shots and see if my period comes back or get bloodwork to test my estridol level. Because im on Tam even if Im not in mebopause its still ok to take it. If you are on an AI and stop the shots and you come out of menopause then the AI is useless which is probably why your MO wants to remove your ovaries. You are much closer to natural meno then Mommato or myself. I really I am resisting removing them because i feel like even if I'm in natural menopause and they dont function anymore I'm still getting some sort of benefit? I dont know. All I know is that the few times that I've had a period i felt amazing. But alas with a tumor that was 95% positive for estrogen my days offree-flowing estrogen are over!

  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2015

    Do non functioning ovaries have a benefit? I'm not sure they do. Menopausal women have problems with heart disease, osteoporosis, urinary incontinence, etc, etc. that makes me think the ovaries don't help unless they're functioning. If that's not true, please let me know. I thought long and hard about an ooph because of my age. But I think that Zoladex will cause the same issues because it is keeping me menopausal (non-functioning ovaries). My mom had ovarian cancer at 18 which is very rare. No other BC or ovarian cancer anywhere. None of these options are very good!

  • rozem
    rozem Member Posts: 1,375
    edited July 2015

    Mommato. Having a mom who had OvaCA would seal the deal for me- i would want them out. I will probably go down that road aswell. I was hoping that after my five years of Zoladex I could just stop and that my ovaries could kick in again and hopefully give me some of the benefit that I've lost with being put into menopause at 42. I haven't had this discussion with my MO because I have a feeling it's not going to be the news I want to hear. Of course I will do whatever it takes to stay cancer free

  • hope70
    hope70 Member Posts: 47
    edited November 2015

    I have been on Tamoxifen over a year, then Lupron shots plus Tamoxifen for a few months. Now ( for almost 3 months) I am taking AI ( Exemestane) and Lupron shots. I am an intermediate Tamoxifen metabolizer , so I was taking double dose (40mg) to make it work as it suppose to. Had no side effects on Tamo , Tamo+Lupron. Just some warm flashes. Now I am experiencing high blood pressure, vertigo. I always had low BP (100/70) . Now it is 130/90 and i can feel it. I was planning to remove my ovaries somewhere down the road to avoid monthly shots. Now I am puzzled on what to do. Has anyone had their blood pressure spiked and then it went back to normal on AI?

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