New topic for Hormone treatment / premenopausal early stagers

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mmm5
mmm5 Member Posts: 1,470
edited June 2014 in Stage I Breast Cancer

Hi Ladies

I know I have discussed this subject with some of you, but really want to start an intelligent, supportive conversation about Hormone treatment, especially if you are premenopausal and early stage. I am looking for opinions about treatment, discussion about "to" or "not to" go with estroget depletion, and if so what is helping you.

 Ok so I will start, you can see from my stats that I am stage 1 no lymph nodes no LVI, however highly highly aggressive tumor in HER2. I finished a year of TCH in May of this year. Chemo put me into menopause so went on Arimidex, could not tolerate went on Femara. Femara was ok but definitely a lower QOL. I was dxed at 42, so still estroget thriving. About May my ovaries appeared to turn back on and sought second opinion, my ONC who is famous in BC felt that Zoladex would be enough as my Estrogen path was only 16 percent which is low on the positive end. He felt that the Her2 outweighed most everything and I was aggressive with that treatment. I am also on the Phase 3 Bisphos trial. Well now I am having my ovaries suppressed and I am miserable again. I was feeling much better when my ovaries were coming back on. I am beyond moody, achey and have specific pains in back that are tough to live with (have been checked with MRI-not mets).

SO....I am just wondering what are you all doing and thinking, especially those of you that are similar in stats.

I met an 8 year survivor yesterday and she told me she is no longer afraid of reocurrance now just the lack of estrogen, her bones are in such bad shape she has had 3 broken ribs, and a compound fracture in spine. Can't exercise or anything. QOL sucks!

What are we getting into for our future if we are in our 30s - 50s now????

Please come one come all and weigh in, there is a gal on these boards who I hope will weigh in as she is an old timer (Alaska Angel) who gave it all up Tamox and everything and I believe a 9 year survivor.

Thanks in Advance ladies, I really hope this thread comes alive.....I need the support on this.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    bump

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2009

    I'm so early into this process that I can't comment yet.  I am really thinking I don't want to do hormonal therapy though.  I'm 51 but still premenopausal with no signs of not being - although chemo will probably put me over the line.   My onc has said I will go on tamoxofen but said I might not like the side effects.  I'm a very thin woman and have been all my life - I already have osteopenia so I don't want to risk making it worse.

    I have heard that many HER2+ cancers don't respond to hormonal treatment the way that others do, and there is now a test to determine if you are one of those people.  So, when I'm done with chemo and have to start the tamoxofen, I think I'll request this test and calculate my odds of recurrance with and without, based ono the results, at that time.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Cool Breeze-

    Thanks for responding, do you know more about that test?

    My Onc does not like Tamox with Her2 and even beyond the metabolizer issue. He will not let me go on it. So It is ovaries out and/or an AI. It all sucks and I used to think I would just do anything and throw all of this and the kitchen sink at it, but now I am unsure and QOL is going way down!

    I feel like I have done so much and do I really need to do more......really want to hear from all on all opinions.

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  • Suzanne3131
    Suzanne3131 Member Posts: 3,953
    edited December 2009

    Have you checked out the Natural Girls thread?  These ladies are doing tons of good research and they could be really helpful to you if you decide that "protocol" might not be for you...Best wishes on your journey!

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  • idaho
    idaho Member Posts: 1,187
    edited December 2009

    This is what I know - I have a neighbor that was dx'd the same time my mother was with about the same stats- (10 years ago).  Now I do realize there are differenct types of cancer etc.  My neighbor took tamoxifen - my mother didn't.  My mother died two years ago... my neighbor is still alive and very well.   That is was I am basing my decision on.  Tami

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Idaho-

    I know lots of the same stories, but then I know many that have recurred on Tamox, and many that quit and are ok, it seems to be all over the board.

    What stage was you Mom and Friend, did they have nodes did they have chemo as well?

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  • LouLou40
    LouLou40 Member Posts: 180
    edited December 2009

    Hello, I'm 40  Her2 +++ as well and have finished Chemo and Rads 4 months ago and still on 3 weekly Herceptin. Since I was in menopause from the Chemo, confirmed by blood test I started taking Arimidex as my Onc dosen't like Tamox for Her2. All good, so side effects, but 3 weeks ago the hot flushes stopped and my period started today...............Onc in San Antonio at the moment, so wondering what the next step will be.

    My DEXA scan pre Arimidex was low, Osteopenia range - just above the dx of osteoporosis, taking vit D and calcium tabs for that, but worried about my bone health considering I plan on being around another 40 + years if I have an Ooph to stay on the Arimidex.

    Anyway, will wait till my Onc gets back and will discuss options, one which will be no hormone treatment, although being stage 2b it's probably not the recommended path.

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  • juliempw
    juliempw Member Posts: 383
    edited December 2009

    I've only been on tamoxifen for a month so I may see things differently down the road but as soon as I got my diagnosis I swore I'd learn to meditate.  I heard about a study on Dr Oz about a year ago where someone had done research that showed that women who meditate for 20 minutes or more a day have much fewer hot flashes, I figure if it helps with that it must help with other things.  Since my diagnosis, I've read so many other health benefits of meditation that it's kind of a no brainer (and I'm not an all natural girl, but use it where it works is my philosophy).  If I miss a day of meditation and especially if I miss a couple days I have many more hot flashes, am much more moody and much more tired.  I know these SEs are minor compared to what so many of you are going through but if you can start with the small stuff, maybe the big stuff is easire to tackle.  

    I've just started reading a book called the Relaxation Response, it and another book by the same author talks about the health benefits of meditation.  Deepok Chopra has some good books as well but the RR book seems to have a more western feel to it and is a little easier to understand and relate to.

     I've also just gone back to doing Bikram's yoga.  Yoga is gentle yet puts the pressure on your bones to rebuild, which is absolutely essential to bone health.  I'm not a yoga guru but Bikram's does seem to be more challenging and more detoxifying.   I'm still going through reconstruction and can't move my arms much but the instructors gladly helped me figure out some good modifications for each posture.

     Sorry so long, but I hope it helps!  Julie 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited December 2009

    Julie

    Thanks so much! I believe in meditation too! I will work towards more consistent practice!

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  • nene2059
    nene2059 Member Posts: 270
    edited December 2009

    I am early stage and on hormonals.  I was premeno and even went on Lupron during chemo to protect my ovaries because hubby and I wanted a baby.  All that went out the window when I came back a poor Tamox metabolizer and had to have the ovaries out.  I guess I could have said no but I have come this far with treatment so I decided to go the distance with it.  Out came the ovaries and I am on Femara now.  I was 36 at dx turned 37 day before BMX. My QOL has been good.  I am starting to feel achey and stiff but nothing that I can't live with.  My problem is that the results from my bone density scan were given to me by me gyno today and I have severe osteopenia in all parameters and osteoporosis in the lumbar region of my spine.  Am I 37 or 87?  Anyway she said that I have to go on an osteo drug and gave me Boniva to start taking but I think when I see my onco next month I will ask about starting Zometa.  This all really sucks.  BC blows.  The good news is that the bone loss is reversable with the meds so I guess there is a silver lining.  It does not change my mind on the hormonals, though.  These drugs have proven to prevent reoccurence and I want all that I can get.  I wear my seat belt in the car to give me a chance in case of an accident so I see my hormonal as my BC seat belt.  I do not want to go through BC again.  I don't want to regret the road not travelled. Just my opinion though and it is how I can live comfortably.  Not right for everyone I know and probably shouldn't be.  I was so young for BC that I feel like I need the extra insurance.  I hopefully have a lot of years left. 

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  • momto3
    momto3 Member Posts: 9
    edited December 2009

    to juliempw ---just curious as to why you chose a matectomy?  your diagnosis seemed to be early on and very small in size.  i have a similar situation and have not had surgery yet, so looking for answers as to lumpectomy vs mastecomy.

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  • CharlestonGirl
    CharlestonGirl Member Posts: 161
    edited December 2009
    I was diagnosed in '06 with stage 1, 0 nodes, ER+PR+ HER2-. Rads, then tamoxifen. A year later was diagnosed with endometrial cancer - after which my onc said I should have had the endometrium ultrasound before ever having started that treatment. So for you ladies that are considering this route, please ask your onc about having this done. Luckily the 2nd cancer was caught super early, completely contained within the endometrium. Thank goodness for that silver lining.
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  • juliempw
    juliempw Member Posts: 383
    edited December 2009

    momto3, Sorry my response is so slow, I'll copy and send it PM incase you don't check back here.  I chose BMX because I'm 34 and have 2 children to raise.  In my mind there was never any question that I would do BMX because I needed to make sure that I do everything in my power to make sure this doesn't come back in the same breast or in the other.  There are no guarantees about the rest of my body but this was what gave me peace of mind.  My other option was radiation, I chose not to do that because it only takes care of one side and I figured, if I changed my mind and felt I needed/wanted to do BMX later, I would have the additional issues of radiated skin making expansion more difficult.  I don't think there is any right decision, but this is what felt most comfortable to me.

     So it's been over a week since you asked about this, where are you in your decision making process? 

     Julie 

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  • Kate0574
    Kate0574 Member Posts: 120
    edited December 2009

    I was diagnosed at age 32, underwent r mast, 8 rounds of chemo and now on tamox for 21/2 years, the percentage I was given with tamox as opposed to no tamox was outrageous, my reoccurance over ten years dropped 17% if I take the tamox for five years.... side effects crazy? yes, yeast infections, weights gain.... night sweats, but not bad enough to stop... I highly recomend tamox!!! hope this helps!!!!!!!! happy holidays to all my survivor friends!!!

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