Stage 3 - Periods have come back, should I take further action?

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Lillymillie
Lillymillie Member Posts: 192
edited June 2014 in Stage III Breast Cancer

Hi ladies, 

Probably not in the right section but wanted to hear from stage 3ers. My chemo finished last July and at the end of January my period came back. I had another in April and another one yesterday. I had spoken to my onc and he said that zapping my ovaries wouldn't be the way to go as I needed some estrogen in my body for bone health etc as I'm still relatively young at 37. (Onc is well respected) I was highly er positive. I don't really find this answer satisfactory and I suppose I'm worried I'm not doing enough. I see a lot of other ladies on here have opted to shut down their ovaries. In an ideal world I would like to have another child and not worry about the beast returning but being here and healthy is paramount so continuing on with my tamoxifen is important. I have to go and meet my consultant next week so would be interested in hearing what some of you other ladies were told and what you decided. Just want to get my head straight and questions ready.

Thanks in advance x

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited June 2013

    I am not ER+ but if your treated cancer was fueled by estrogen, than I would think that your period returning means that the tamoxifen is not doing its job. I hope someone else can give you better information! 

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited June 2013

    Anyone?

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  • AgentMo
    AgentMo Member Posts: 72
    edited June 2013

    Two years ago the recommendation for you would have been ovarian suppression. However, guidelines have been changed and now they only recommend tamoxifen without ovarian suppression regardless of age.

    Having your period does not mean tamoxifen is not working. Tamoxifen does not supress estrogen, it adds another type of estrogen and if this type binds on the cancer cells, they do not grow. However, in my personal opinion, chances are greater that the tamoxifen-type and not the normals estrogen binds on the cancer cell the less normal estrogen is in your body (after all, they are in some kind of competition).

    So for me common sense suggest that you should suppress your ovaries. I am a year younger than you are and I go by Zoladex + tamoxifen. I also convinced my onc that I should have Zoladex for 5 years. So far insurance pays, but if not, I would go by my gut feeling and pay myself. I consider the Zoladex part at the very least as important as the tamoxifen part.

    Hope this helps.

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  • Momine
    Momine Member Posts: 7,859
    edited June 2013

    I am older than you, so that changes the equation some. I think, in your shoes, I would want to find a good gyno who knows about cancer. It can be a tricky decision to take the ovaries, and it depends on a number of risk factors (bones, cardiovascular health, the stupid cancer etc).

    In my case we got rid of them when I finished chemo, at which point I was 48. I was in perimenopause when I got DXed. My mother had ovarian cancer, my BC was lobular  (likes to sow mets in ovaries/uterus) and we have no family history of heart problems.

    Are you on tamoxifen?

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  • MaxineO
    MaxineO Member Posts: 555
    edited June 2013

    I was in a similar situation: my period came back 6 weeks after chemo, so I started zoladex injections (ovarian suppression) on top of the tamoxifen. I was HIGHLY ER+. My onc said "women who don't have periods tend to 'do better' than those who do." What exactly that means, I think we can all infer. I asked about an oophorectomy, and she was NOT inclined to do so because she didn't want to close the option of re-introducing estrogen in the event of significant bone or heart issues.

    Concerns about bone health and heart health due to little estrogen are legitimate; I now see a cardiologist annually and I take extra calcium.  I was 38 at diagnosis, 40 now.  "Menopause" really sucks big-time, but I am determined to endure it.

    Best to you!

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  • rozem
    rozem Member Posts: 1,375
    edited June 2013

    my onc said the same as maxineO in that women who dont have periods do better...i hate the zoladex plus tamox but im going to do it until the SOFT study comes out in December.  You could do the same, shut them down chemically that way you have the option to stop and get your estrogen going again.  The results should be interesting as i think this is a very common dilema for us pre-meno women, high estrogen and periods returning

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  • BethCon1
    BethCon1 Member Posts: 132
    edited June 2013

    I'm stage 3 also and had my period come back after chemo and my onc just has me on tamoxifen. I just keep thinking , period = estrogen = cancer coming back. It's hard to not be paranoid.

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  • kelly279
    kelly279 Member Posts: 55
    edited June 2013

    Thank you for this post. I am also stage three and just got my first period since August. I am on tamoxifen and my last chemo was early December. My MO didn't seem too concerned with the possibilty of it coming back, but after reading this I am wondering if I should look into the zoladex. 

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  • chrishat
    chrishat Member Posts: 89
    edited July 2013

    i was 44 when diagnosed and also highly er pr +. was told chemo would shut down my ovaries but after four rounds of adriamycin was still menstruating.  had two vaccinations that temporarily stop ovarian function (faslodex?) . then studies came out showing a slight superiority of arimidex over tamoxifen for overall survival. after about ten consultations including a trip to MD anderson, i opted to have my ovaries removed and immediately got on arimidex. interestingly, although all doctors were sort of vague and non commital about the advisability of having the oopherectomy, ALL of them....onc, radiation onc, gyno, surgeon.....said 'glad you did that!'  afterward. it's like they would not reccomend it since it is not officialy the standard of care, but once i did it, they all agreed that it was a wise course of action. my radiation onc told me that in europe prophylactic oopherectomy is considered as effective or more so than chemo for highly er + women. so, i agree that abrupt menopause sucks, but after three years i have adjusted, and i feel comfortable that i have done all possible to get rid of all my estrogen. i figure that, despite the health concerns associated with that, my biggest health concern was my stage 3 cancer.....i'll cross other bridges if/when they come my way.

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  • chrishat
    chrishat Member Posts: 89
    edited July 2013

    i was 44 when diagnosed and also highly er pr +. was told chemo would shut down my ovaries but after four rounds of adriamycin was still menstruating.  had two vaccinations that temporarily stop ovarian function (faslodex?) . then studies came out showing a slight superiority of arimidex over tamoxifen for overall survival. after about ten consultations including a trip to MD anderson, i opted to have my ovaries removed and immediately got on arimidex. interestingly, although all doctors were sort of vague and non commital about the advisability of having the oopherectomy, ALL of them....onc, radiation onc, gyno, surgeon.....said 'glad you did that!'  afterward. it's like they would not reccomend it since it is not officialy the standard of care, but once i did it, they all agreed that it was a wise course of action. my radiation onc told me that in europe prophylactic oopherectomy is considered as effective or more so than chemo for highly er + women. so, i agree that abrupt menopause sucks, but after three years i have adjusted, and i feel comfortable that i have done all possible to get rid of all my estrogen. i figure that, despite the health concerns associated with that, my biggest health concern was my stage 3 cancer.....i'll cross other bridges if/when they come my way.

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  • new_direction
    new_direction Member Posts: 449
    edited August 2013

    I was told if periods came back I should increase the Tamoxifen dosage to 40 mg daily instead of 20 mg daily??
    Has anyone else been told the same.

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  • new_direction
    new_direction Member Posts: 449
    edited August 2013

    hey wanted to write here again because Ive been trying to find some information about this. There seem to be very little information regarding this but I found some results which might indicate that Tamoxifen might work in a different way when giving in higher doses and also found an article with promising results when using high dose tamoxifen in advanced breast cancer.

    I was kind of afraid of the side effects but haven't so far come across information about more serious side effects when dose is increased.

    Maybe someone knows more or has something to add??

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited September 2013

    Hi ladies,

    Thank you so much for all the comments. Was waiting to have my face to face meeting with my onc before replying. Had only managed to speak to him through my breast surgeon. I made notes of all the things discussed above to take in with me as I could ask him with lots of questions. I told him about my concerns about my periods returning and he said that 50% of women in my age group would see their periods return but Tamoxifen would do it's job. (90% of under 30s would see their return. He said he wouldn't recommend ooph for me. For some people he wouldn't hesitate...I don't know what he meant as I think I'd be a good canditate as Im highly er+ with large tumour and affected nodes. I went in to ask about ovary removal and to check about conceptives (I can't use coil for 5 years apparently after cancer. It has very low progesterone which should be okay as I was pr- but manufacturers reckon 5 years after breast cancer). Then I got a curve ball. He said if I was to fall pregnant I could just come off tamoxifen...What??? I thought all along that having another baby would cause my estrogen to raise and therefore be dangerous for me but he told me that he has seen a few younger women go on to have kids and new studies have shown that it only slightly effects your outcome. When he says effect, does that mean you could 'slightly' have a reoccurance or worse still 'slightly' die?? He is saying if you are going to have a reoccurance you will and getting pregnant won't really increase your chance. (I think he said Oxford study). My head was spinning at this stage. I thought another child was out of the question with my situation. My latest scans all looked good and he was happy with everything. I'm UK based as this guy is well respected but I'm very confused when every other onc is saying something different. I'm wondering if he just has to follow the guidelines in front of him regardless of what may be benefical for me or maybe I don't tick enough boxes for ooph. I left really reassured and happy but when I read these forums I being to worried that I'm not doing enough.

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  • rozem
    rozem Member Posts: 1,375
    edited September 2013

    hi ladies

    i also wanted to update on what is happening on the ooph, ovarian suppression front.  I contacted my second opinion onc at Dana Farber in Boston and she said I could stay on the tamox alone without having my ovaries shut down.  Now, im not sure if everyones situation is different due to stage and grade but i was 95% er positive.  I am having a really tough time on the shots so with her blessing i am stopping the shots.  If something different comes out of the SOFT study i will resume.  I am hoping i dont get my periods back but that my ovaries produce some estrogen - enough to help protect my bones and joints which have been terrible since i started

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  • politicomama
    politicomama Member Posts: 187
    edited September 2013

    Thanks for starting this thread.  It is something I have been weighing as well.  I on 33 and on Tamoxifen only.  No ovarian supression was reccomended for me.  My local surgeon and gyn suggest having a hysterectomy, or ooph, but I am just three months out of treatment and would like to think in the healing phase.  My last cycle was Nov. 12 after my first AC.  Selfishly I would like to do some sort of reconstruction before I rip everything else that is female out of me. 

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