Sucking out the estrogen

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Wrongchick
Wrongchick Member Posts: 36
edited June 2014 in Stage III Breast Cancer

Friday was my last round of chemo ( yippee!) and I will start  radiation in three or four weeks.  By the time I'm done with the zapping portion of the program, I need to decide what to do about estrogen. Or more specifically, how to wave it a tearful farewell.  I'm not sure why, but the thought of being without working ovaries fills me with such sadness.  At any rate,  I'm 43, with two young children, and wish to do the most aggressive treatment possible while maintaining a good quality of life.  Frankly, I'm not sure some days if "good"   is even possible, but perhaps that's the decadron withdrawal talking.  

Ok --here are some of the options my MO has mentioned:

Tamox with Zometa and Lupron shots

Tamox with Zometa and remove ovaries

An AI with Zometa after removing ovaries.

I have a big case of chemo brain at the moment, but I thought I remembered reading that starting with Tamox, then going to an AI, even if one is in chemo or surgical menopause, offers more protection because the total years of treatment is greater.  Is this true?

I'd love to hear from other Stage 3 sisters, especially those with young children, regarding the choices you made and some of the thinking behind those decisions.  I'm also wondering about how to choose btw  Tamox and AI, if indeed I can choose.   My tumor was ER+ Pr-, which complicates things somewhat.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited April 2012

    Hi WC,

    I was 47 at the time of my dx and was immediately thrown into menopause.  I have two kids as well whom are now 15 and 13.  I wanted to do whatever was necessary to be here for them just as you.  My onc has decided that I should be on Tamoxifen for 5 years then switch to an AI.  I just had my 6 month checkup and she reconfirmed it was still the route to stay on.  There has been no discussion about removing my ovaries at this point.  Do you mind if I ask why they want to do that for you?  I really wouldn't care at this point myself, but it was kind of hard when the menopause hit.  Just the knowing it's not possible anymore thing, you know?

    Anyway, keep us posted on what you decide.  I'm sure others will be piping in soon!

    Take care,

    Sharon 

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  • caaclark
    caaclark Member Posts: 936
    edited April 2012

    I was 40 when diagnosed.   I ended up going onTamox for about a year.  I made the decision to have ovaries removed after a b9 cyst was found on one.  After hyst. I went on Femara.  I took boniva for a while but had horrible side effects.  Currently on calcium and I lift weight/run to try to prevent bone loss.

    I don't think I am helping-lol.  I made the decision to try to deplete as much estrogen as possible.  My kids were 4, 6 and 8 when I was diagnosed.

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2012

    What do the zometa and lupron shots do



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  • lostinmo
    lostinmo Member Posts: 922
    edited April 2012

    I really don't have anything to add here, but weighing the same options at this time. I understand that removing the ovaries doesn't stop all the estrogen. But I'm 45 and my thing is I don't really want to do a chemical shut down for 5 years, then have my period start back up to do menopause all over. Does this happen?

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  • karen1956
    karen1956 Member Posts: 6,503
    edited April 2012

    Zometa is a biophosphonate...Lupron shuts down the ovaries....My onc recommended having my ovaries out, as I was 50 it made sense since I was peri-menopausal and one less thing to worry about....wasn't going to have more kids....chemo stopped my periods and onc didn't think they would start back up  due to my age....had one shot of Lupron when finished chemo, and after finishing rads and taking a bit of time to heal had my ooph....no reason to have hysterectomy - uterus removed unless having problems with it....the association with BC is ovarian cancer...I still have my uterus and fo rme that is okay as it helps keep other parts in place!!!!  Being thrown into instant menopause is not easy and I honeslty dont know if there is a difference with keeping ovaries and taking Lupron or having ovaries out!!!  I took AI's for 3 1/2 years....I stopped my biophosphonate when I stopped the AI's but that was a mistake for me as my bone density tanked!!!  So I'm sure I'll be going back on it once I talk to my PCP...right now I'm on mega doses of Vit D, but calcium, mag, Vit K, DIM and a few other things.....Hope I helped a bit...

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited April 2012

    Hi, I have a bit of a dilema and would love some thoughts on this. I had a lumpectomy on 3/15 and did not get any clean margins, lobular was discovered along with the ductal they went in for and they took 4 nodes and all 4 were positive. I had a bmx on 4/11, but prior to the bmx my MO ordered the oncotype dx. His guess was that it was going to come back somewhere in the middle. I found out 2 days ago that even with the positive nodes (17/17 with the bmx) that my score was a 6. Prior to the results his plan was chemo and some chemo trials. Now I am not sure what the plan will be with a score of 6 because the nodes had the same cancer as the breast tissue and it appears chemo is of little or no benefit. I don't want to do chemo for the hell of it, yet I don't know what I should do.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited April 2012

    I'm not sure if what I chose was the absolute best route, sadly I didn't research it, but it's what was recommended so I went with it.  I was 34 at dx with a 3 & 18 mth old so I know all about having small ones and wanting to be here.  I went into chemopause, started an AI & Lupron right after chemo, and one month following rads I went for ooph.  I personally didn't have issues with the loss of my ovaries (everyone is different), I was done with having kids and I'm also BRCA+.  The loss of my boobs bothered me much more.  I did wonder why I went on AI and not Tamox. then AI. but think it has to do with I was in menopause, even though it was chemo induced.  The lack of ER hasn't been pleasant but it is what it is and has to be done.  I hope you find a tx plan you're comfortable with and trust...got to be here for the long haul! Take care.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited April 2012

    BTW...congrats on finishing up chemo!  Yay!

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  • MaxineO
    MaxineO Member Posts: 555
    edited April 2012

    I am in a similar situation. Diagnosed at 38, done with treatments and am on Tamox + Zoladex (same as Lupron).  I thought about getting ovaries removed, but just last week, my MO recommended against it.  She said, the ovarian suppression is doing the same thing already (as removing ovaries), and removing them is so much more permanent. Estrogen does positive things for us, and she wanted the option to stay intact (specifically, she was concerned about heart issues).

    Also, I want to maximize my years of hormone therapy: if I stay on tamox + zoladex for five years and then either remove ovaries and/or switch to AI, I think I will get more years of helpful treatment.

    I will say that the ovarian suppression will put you in immediate menopause: no periods, hot flashes, creaky joints.  And that really sucks when your kids are still young (mine are 8 & 9), but it's better than the alternative.  As you said, I want to be as aggresive as possible.

    FYI: My insurance would NOT cover zometa because my bone density was normal.

    I know, so many options!  You might try the ovarian suppression for a few treatments to get an idea of whether you want to do permanent removal.  You can do either monthly injections or one every 3 months (that's what I do).

    Congratulations on finishing chemo!  Radiation was tiring for me, but nothing compared to chemo. Best of luck!!

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  • Aim4th
    Aim4th Member Posts: 12
    edited April 2012

    I was 34 at dx at of coarse went through hell but the best thing I did was to have a hysterectomy with ovaries gone.... I take tamoxifen and celexa, my side affects really aren't too bad, my advice get rid of it all... just from my experience.

    good luck, it is a big decision, but I don't needs anymore risk factors here..

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  • DCMom
    DCMom Member Posts: 624
    edited May 2012

    Chiming in I was 41 at diagnosis and started on tamoxifen.  After 3 months of repeated cyst scares on my ovaries I had a complete hysterectomy.  It was a weight off my shoulders and I guess the last step toward feeling like I had thrown the whole kitchen sink at this.  I was surprised, but my doctor said I should stay on tamoxifen for the 5 years and then switch to an AI in order to max out the years. I haven't had any bone density issues at this point and feel like when I do finally stop taking hormonals I still will have limited hormone production.

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  • Outfield
    Outfield Member Posts: 1,109
    edited May 2012
    Wrongchick,
     
    My kids were 2 and 3 when I was diagnosed, also stage III and also ER+, PR-, but I was kind of an old mom at 44.  My ovaries were totally blasted by chemo and never recovered - we've kept a close eye on them in a number of ways.   It's hard watching the ovaries go.  Cancer takes so many things from us, including in a lot of cases, our youth.  I'm sure a lot of us get it about the "tearful farewell."
     
    A friend of mine's oncologist told her something really wise.  He said "Don't get upset when you see people diagnosed after you getting different treatment."  It's true - we do the best we can do, at the time we do it.  I started an AI just before the tamoxifen-then-AI timing thing came out.  I had some problems that were probably endometriosis after a horrific emergency C-section, and tamoxifen can aggravate endometriosis, so that's one reason I chose the AI.  I'm not sure what I would choose now.  I sure understand wanting to do what's best for the kids, but there's only so much fine-tuning possible.  There isn't a study to address every question, and even if there were the answer would probably change next week.  
     
    So I guess what I'm saying is, yes it sucks to be menopausal with two preschoolers.  It sucks to have to make these decisions.   I don't think good prognostic numbers are there for your particular question.
     
    Edited because I didn't finish it the first time. 
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  • vacationbound
    vacationbound Member Posts: 171
    edited May 2012

    My Hysterectomy and Oopherectomy are scheduled to be done in 2 weeks-my Tamoxifen never worked, right off the bat it attacked my uterine, ovaries and cervix. After daily bleeding episodes for 3 1/2 months, I was finally taken off. I think I would have been a perfect candidate for the CYP2D6 genotyping, anyways, my BC being ER/PR+, it was a no-brainer to have everything removed. (BRCA Neg but mommy had Hysterectomy for reasons not known to me) so I have no other choice but to cross over to the AI's. I am currently on Lupron and Arimidex and I felt that having my ovaries suppressed monthly by a shot was just not good enough-I'm trying to eliminate drugs in my system, not add.....anyways, there is a cost factor and dependence involved as well-what happens when I lose my job and my insurance, how will I pay for the shots and monthly bisphosphonates then? Oh, that's another thing, not interested in the bisphosphonates at all!!! As Carol Clark mentioned above, take the calcium, Vit D3 and do weight bearing exercises to strengthen bones. Did you know that Bisphosphonates are the same chemicals they use in water conditioner's and laundry soap? They not only inhibit osteoclasts but osteoblasts as well, making the bone shatter and splinter when fracture occurs, not to mention the pain that goes along with monthly treatment-no thanks!!! I will take a natural form of Strontium as that is all the US FDA will allow us (the pharmeuctical brand is outlawed here in the US but approved in over 60 Countries worldwide) things that make you scream "Big Pharma"......I've done my homework and just because a doctor tells me it's standard protocol-standard for who-your Oncology practice? You need to have me come in monthly because you need to keep your lights on? So what if a part of my body is missing, it's permanent, so is my cancer and my ER/PR status-my body is attacking me and I will fight back any way I can.....If I need any type of hormone, which I highly doubt, their are a lot of resources for that too-so no big loss...really, I am very comfortable with my decision.

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  • Sonata
    Sonata Member Posts: 221
    edited May 2012

    I was 33 at the time of original diagnosis. My children are currently ages 9 & 7. Just recently, I was dx'd with a recurrence following a bilateral mastectomy in Nov 2011. Since I was still pre-menopausal, and am unable to take Tamox due to the way my body metabolizes it, I began Lupron shots so I could take an AI. My onc then put me on Arimidex.

    Just in case you're wondering why I didn't just choose to have an ooph to prevent having to take Lupron? Personal decision---I've had so many surgeries recently that I just cannot endure another. I've already had a hysterectomy in 2008. At the time, my gyn preserved my ovaries because I was still young...and still 2 years away from a major BC diagnosis. Btw, if I could rewind time, I would have the ovaries taken at the same time. Damned if you do, damned if you don't, right?

    At this point, I feel there is really no point in keeping my ovaries since I won't be having any more kids. And it will suck if at some point I'm able to stop all the drugs (unlikely) and my ovaries magically start working again---who wants to go from Pre-menopausal to complete Menopause back to Pre-menopausal!?!? I don't personally like putting all of those drugs in my system, but what can you do? Does it suck to be in menopause at 35 with 2 young kids? Of course it does! In the world of breast cancer, we sometimes have to make choices that we don't want to.

    You do what you have to do. This is what works for me at the moment. Good luck with your decision!

    ~Cate

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  • vacationbound
    vacationbound Member Posts: 171
    edited June 2012

    2 1/2 weeks post Hysterectomy with Oopherectomy and I feel great! I was shopping at grocery store 2 days after. The laproscopic procedure is so easy-I had more pain from them trying to put an IV in my arm before surgery than the actual surgery!!! I stayed in hospital overnight. Easy peasy! Oh, just got my Lupron shot bill in from Oncologist's office-YEP! They went up to $400.00!!! That's a car note for me!!! 

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