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Coming off tamoxifen early to have a baby

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  • Skibunny
    Skibunny Member Posts: 54
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    Thanks TessmereldaC. I must be patient then...



    Good luck girls! Fingers crossed for some 2013 babies from this thread!



    I'm off for my recon on Weds. Looking forward to getting my new boobs. Really hoping they'll give me some body confidence back.



    X

  • jpmercy
    jpmercy Member Posts: 94
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    Hi girls, I did acupuncture, I went weekly the best I could but had many weeks where I just couldn't fit it in and went every other week my periods were so much better once I started. I also did svaroopayoga you can get the DVD online I truly think that along with the acupuncture the yoga helped to relax me and keep me from feeling anxious about the what if I can't get pregnant. Anyway I'm 37 weeks with my twins should be any day!!! I can't believe I have made it this far I'm huge and so ready for the girls to arrive if I dont go by Friday I have a schedule c section bc baby b is breech. I'll keep you posted! Jen

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    oh Jen you must be SOOOOOOOOOO excited!!! :)   Fingers crossed and can't wait for the news of the first of many 2013 babies!!  were you trying long before you got pregnant?

    soccergirl - that is great that you can see the results with accu already!!  everyone is different as regards accu but in general I go once per week.  I probably should have gone more often cos it took 6 mths to readjust my periods but with most people they start readjusting much quicker. 

    SKD - so sorry to hear about the miscarriage.  it's great that your cycles are back to normal.  Have you tried ovulation test kit around day 12-14 to check your ovulating?  My onc referred us to fertility specialist when we told him we wanted to start trying. They will organise the blood tests for you and bloods and sperm tests for your hubbi.  when all the tests are back you will meet with the fertility specialist to discuss the results and the best course of action from there.  In my case after they were happy that the bloods etc were fine they did a scan of my ovaries/womb and then a procedure to check my tubes.  Good to get it all checked out and then at least you know there are no issues. 

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    good luck with the recon Skibunny!!  Let us know how it goes.

  • jpmercy
    jpmercy Member Posts: 94
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    Tess, I started accu after I finished herceptin in October I started in November my onc told me to wait six months post herceptin to start trying so I started accu then in hopes to regulate my periods since I was not getting them at the time herceptin stopped, my accu changed my diet n started yoga n my periods regulated the first month we were able to start trying in april and got pregnant in May. It was funny my accu told me when I started seeing him that I would have an aha moment and then get pregnant it was totally how it went for me, I went on a mini sister vaca to Miami in may and really took the time to sit on the beach alone and cry and deal with my emotions, I felt like it was the first time I really let myself grieve from having cancer, a BMX, and chemo and my fear of not having more children I felt like before then I just stuffed my feelings being strong for my family and just making light of it all as way to cope and survive but it was like my aha moment he talked about I needed to let myself Feel and grieve and get my real feelings out I got my period the day we left the vaca and if my math is correct I got pregnant two weeks after that vaca. I'm a true believer in emotions playing a huge part in trying get pregnant even for those who do not have a hx of breast cancer your emotions bs stress reek havoc on your hormones which in turn make it difficult to get pregnant don't dismiss this part ladies its important and you deserve the time to get your feelings out after all you have been through! I feel lots of 2013 pregnancies awe in the making!

  • NitNat
    NitNat Member Posts: 15
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    Hi Everyone, I still love this support group. I just wanted to update my situation.... after the miscarriage I had mid last year I am pleased to announce that I am now expecting again. But I had my 19wk scan yesterday and they found out I'm having a little girl but she is presenting with a cleft lip (here i was worrying about breastfeeding and now I just have to hope that the baby doesn't have too many feeding issues herself!)..... I am really sad about this and I know alot of you on here would give anything to be in my shoes but I just don't want to join another support group, and I wish my little daughter didn't have to have this facial deformity. Thanks for letting me share my news and I will continue to try and be strong but I am always sick and tired of having obstacles to jump over- why isn't life smooth sailing like it appears for everyone else! Sorry rant is over..... I will be in touch and I wish everyone luck on their journey- Nat :-(  

  • Arale
    Arale Member Posts: 14
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    Hi Nat,

    A weeks ago I was having a conversation with one of my doctors. He is currently the chief of the fertilisation unit, and I wanted to talk to him because I have the BRCA1 mutation and I am scared of the possibility of having a child with the mutation. It was a long long long conversation, and at a time he said: "ok, so you´ve had breast cancer, and you´ve had miserable times, but aren´t you happy to be alive? I'm sure you've had many happy times and that was worth living this life, right?" And then he said that he has many consultations of couples expecting a child with cleft lip, and that they were usually really worried about it. He said: " if any of these couples have ever known other people with cleft lip, then they would be more calm down, because it usually solves with a surgery after birth and that´s all". I don´t know if this helps (this is exactly the moment where I miss not having a better english for giving you all my strenght!).

    Have you talked to your doctors about that?

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    Jen thanks so much for sharing that with me - it makes sense really.  Sometmes I think i've dealt with everything but there has been so many things and not just the cancer that have happened in the last number of years that I think it's time that I try emotional counselling.  I had councelling to get me through chemo and radiotherapy but I think it would be no harm to make sure I have everything addressed and out there.

    aw Nitnat - big congratulations on your pregnancy!!  I can totally hear what you are saying about all these obstecles - feels like there is always something.........cancer, trying to concieve, etc, etc.......I think Arale gives great advise and how good would it be that an op could sort the cleft lip?  It will take time to take this in and then i'm sure you will feel up to researching.  One step at a time......there is great joy to come to you in just a few months when you hold your gorgeous daughter in your arms xx :)

  • sakura73
    sakura73 Member Posts: 76
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    Nit Nat many congratulations on your pregnancy! I am sorry your little one will start life with that additional challenge but as others have said, cleft lips are very, very treatable with early operations and your beautiful little girl won't be deformed at all, she will be perfect, both before the operation and afterwards. Best of luck for the coming months. If you are in Melbourne, PM me, we should meet up!

  • Skibunny
    Skibunny Member Posts: 54
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    NitNat, CONGRATS!! Of course you were hoping for no complications and don't want anything to be wrong with your little girl - but I echo the other girls, it can be corrected and she's going to be gorgeous and make you very happy. Start of a new life now. Really happy for you. x

  • slg76
    slg76 Member Posts: 86
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    Hello.  I have read much of this thread and am in a similar situation.  I was diagnosed three years ago when I was 33 and six months pregnant with my first baby.  I did chemo while pregnant and more chemo, surgery, and radiation after I gave birth.  My little girl is perfectly healthy and is 2 1/2 now.  I feel so lucky to have her!

    I went on tamoxifen but knew that I wanted more kids.  I am 36 now so have some time but not too many more years of fertility left I imagine.  We also are not sure if the chemo drugs harmed my fertility and any fertility preservation before treatment was not an option because I was pregnant.  Any testing for ovarian reserve has not been done because tamoxifen interferes with it.  

    I know you can get a different answer from every oncologist you talk to.  My oncologist recommended at least a year on tamoxifen before taking a break for pregnancy.  After that she was totally comfortable with me getting pregnant and does not feel that it poses any additional risk for recurrance.  She is INSISTENT that I go back on the tamoxifen after having another baby or two.  She says the research shows that five years is optimal but it seems to be five years total, not necessarily consecutive.  

    I am lucky enough to have an oncology fertility specialist near me.  She agreed with my oncologist about coming off the tamoxifen.  She said that women take an average of 7-8 months to start periods again after coming off tamoxifen.  I got my periods back six months after stopping tamoxifen.  It may or may not be coincidence but it was also the first month I started acupuncture.  I have had three periods in four months now.  We were unable to try to concieve the first two cycles because I needed some scans done with radioactivity.  We are now trying and hoping to have another baby soon! 

    Congratulations to those of you already expecting.  It gives me hope to read your stories.  I hope to have good news of my own soon :)

  • jpmercy
    jpmercy Member Posts: 94
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    The twins are here! Hi everyone just wanted to update, last Tuesday the 22nd the twins made their arrival at 37 weeks! Avery Teresa was born at 3:29am weighing 5lbs 3oz and sister Grace Carol was born at 3:32 am weighing 5lbs 14 oz they were born on our sons third birthday! Crazy to have three children all with the same birthday! Avery and Grace are doing so well and came right home with me! They are a week old ad just perfect! Thank for everyone's support on this thread post breast cancer babies are possible!

    Love, Jen :)

  • tlew
    tlew Member Posts: 48
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    Congrats Jennifer! Wow 3 birthdays all on the same day, thats amazing. Thanks for sharing your story, its give us young women w/BC some hope.

  • Skibunny
    Skibunny Member Posts: 54
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    Jen! Wow!! That's amazing. At least it'll be easy for all family members to remember their birthdays! Is it some special occassion 9 months prior...?! Wink

    So many congratulations. Thanks for letting us know. So wonderful to hear and gives us all hope.

    x

  • soccergirl
    soccergirl Member Posts: 190
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    Congrats Jen!  What an amazing story.  Your story inspires me!!!

  • angelbaby1
    angelbaby1 Member Posts: 27
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    WOW! congratulations on your twins. that is just the best news!!

    slg76 so interesting on the completely differing opinions of oncologists about taking a break from tamoxifen. My onc and surgical team are both completely adamant that if I were to take such a long break (more than a yr) to have a baby there would b no point going back on it. they say i could go on it to help prevent new cancers but it would no longer treat the existing diagnosis. so they want me to stay on it as long as possible (at least 3 yrs) because once i go off it there is no going back. 

    I much prefer what your onc tells u. i'd love to take a break and have the baby i so desperately want, then i'd b more than happy to complete the course. If only we knew what was more beneficial and didnt just have to accept 'opinions'.

    please keep me posted with what u decide. i've only been on tamox for 7 months and have decided not to come off before the 2 year mark so i still have a lot of thinking time ahead, but i like to b kept posted with everyone elses decisions and how they r going some time down the track. i know no one on here has regretted their decision to come off it yet. why would they? they have their beautiful babies. im just so worried about making the wrong choice and not being here to watch it grow up. negative, i know but sometimes u cant help those thoughts. why does it all have to b so hard?

  • Skibunny
    Skibunny Member Posts: 54
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    Not negative Angelbaby, it's an important consideration and all I can think about. I lost my mum to breast cancer and would be devestated if I brought a child into the world and then found out I wouldn't be around to look after him/her. But also I couldn't live with the regrets if I lived to 90 and never had children. You're right. It's VERY hard. Come October I will have been on Tamoxifen for 2 years, so this summer I'm planning on getting as many opinions (which I'm afraid is all I will be able to get as there just doesn't seem to be any concrete stats out there) to try and understand my risks a bit more so that we have a month or two to discuss whether I'm going to come off Tamoxifen. I'll deffo keep in touch on this thread. It's given me so much hope.

    x

  • Arale
    Arale Member Posts: 14
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    Congrats Jen!! You must be on heaven right now!! Its good to have happy ending stories here. Keep us updated about how is everything going with your babies!! Hugs!

    As for me, it seems that things are slowly going back to normal. I got an ultrasound last week and my endometrium was 5 mm (2 mm while on zoladex) and gyn could see two follicles growing, so it seems that my period will come sooner or later!Wink

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    ah Jen!!  Huge congrats on your babies!!! :)  You must be over the moon with your 2 girls!!  Nice all in one birthday party!!  Another success story to add to the the ever growning list!!

    Anglebaby1 - I can totally relate.  I'm never one for taking chances - waited 4 years but my onc was trying to talk me into it for about a year.  I think I put it off cos I was in denial.  I think as women our instint is to have kids so it's near impossible to get away from that. 

    Skibunny - I am sorry to hear about your mum.  But you are right - arm yourself with info so that you are happy that you are making and informed decision.  You are correct as well that there are no stats. I asked my onc for stats and he is really young and very much into stats and he could not find anything for me.  Frustrating to say the least.

    Arale - that is great news!  we await news of period return!!! :)

    As for me we are trying away and I am continuing accu.  Have a return appointment with fertility expert in March but not planning on having to keep it with any luck!! :)

  • angelbaby1
    angelbaby1 Member Posts: 27
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    Tessmerelda - do u mean u waited 4 yrs to start the tamox or u were on it for 4 yrs?

    Skibunny - please let me know what opinions u get. I have only got the opinion of 1 onc and my surgical team at this point and while their opinions are the same i would b very interested to hear more. I would love it if it were still as effective even if the 5 yrs was not all in one go. means i could take my break as early as next yr! def keep me posted :)

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    Angelbaby1 - I was on it for 4 yrs before I came off but it as a personal choice to stay on that long.  I got the impression that my onc would have been ok for me to come off at 3 yrs but I wanted me back on it after baby.  I would think at this stage I won't be back on it although research has come out recently on the effectiveness of being on tamox for up to 10 years which I guess is good as it means that even at my stage I could go back on in after a few years off.  Waiting my next onc visit to discuss this new research with him but right now i'm focusing on getting pregnant :) 

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    Sorry I should have mentioned that the new research pertains to  estrogen-receptor positive BC.  If anyone wants a copy of the article just PM me - I got the mail from young survivors coalition.

  • sakura73
    sakura73 Member Posts: 76
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    Jen congratulations!!! Wonderful news.

  • Sheko
    Sheko Member Posts: 2
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    Hi ladies, I was thrilled to come across your discussions.  Ye have been a real inspiration and support to me. I am very similiar to ye all.  I was diagnosed in oct. 2008, I was 34 at the time.  Needless, to say it was a huge shock to me and my family.  Anyhow, tg, I am d other side of it now.  My dh and I have 2 beautiful daughters, 8&6, but there is a huge yearning on me to have another baby.  I have been on tamoxifen for almost 4 years and I am unsure whether to come off it or not. My onc tells me that having a baby will not cause a reoccurance but coming off the tamoxifen early could pose a threat to me - I would not be gettting d full benefit of it.  I'm so confused, I'm afraid to come off it early for fear of a reoccurance but i'm also afraid of regretting not having another baby.  My gynae did blood tests on me and my chances of becoming pregnant are quite positive.  Any opinions or thoughts?

  • cloudberry
    cloudberry Member Posts: 17
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    Hi Skibunny - if you are still out there? - I was wondering what you decided. I've been on Tamoxifen for 2 years but am very confused as my onc is very relaxed about coming off Tamoxifen while my consultant strongly advises me to stay on it for the full 5 years. I really want children and am worried the longer I leave it the harder/more complicated it might be. I'm finding it very difficult to make such important decisions with so little information and conflicting views. I'm leaning towards erring on the side of caution, but am so interested to read what other people make of this difficult situation! x

  • cloudberry
    cloudberry Member Posts: 17
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    Thanks for sharing all your experiences - it's so helpful to read about other people in a similar situation and what you make of it all. It's also lovely to read about the babies who keep coming - congratulations to the new mums!

    I've been on Tamoxifen for 2 years and was looking forward to coming off it and trying for a baby this year as my onc is very relaxed about coming off Tamoxifen - he even talked about me coming off it after 18 months, so I thought I was being sensible waiting for 2 years. However, my consultant (whose opinion I really respect) has now strongly advised me to stay on it for the full 5 years. He says that it's now believed that if you take it for 5 consecutive years, the benefit actually lasts even longer.

    I really want children and am worried that the longer I leave it the harder/more complicated it all might be. I'm finding it very difficult to make such an important decision with so little information and these conflicting opinions. My consultant also mentioned a spike of reoccurence at 3 and 5 years, so I think I'll certainly give myself another year, but I am considering a compromise of 3 or 4 years total, depending on how desperate I get!

    I'd find it hard to forgive myself if I got ill again (for my husband's sake as much as my own), but I'd find it equally hard if my decision ruined our chances of having a baby.

    Thanks again for sharing your stories. I hope it all works out for everyone! x

    Dx 2010, 8mm, Grade 2, 2/10 nodes, ER+, HER2-

  • TessmereldaC
    TessmereldaC Member Posts: 81
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    Sheko - welcome!!  I'm in ireland as well and very similar story to you  I was diagnosed jan 2008 and was 33.  I made the choice to stay on tamox for 4 years.  Like everyone of us it's a dilemma as the statistics are just not there.  I asked my onc how much I was increasing my chances of a reoccurance by coming off - he could not give me anything positive but reading between the lines it was somewhere between 1-3%..very low.  I gues sometimes it depends on where they are at too.  Like my onc is the same age as me and has 2 small kids so I think he understood my need to be a parent. 

    Cloudberry - I had that chat with my husband too about what if he gets left with baby.  I guess as he said would we ever do anything if we knew the risks.  Like we probably have more chance getting run over by a bus or falling off a cliff in reality  Life is for living and going with your gut.  I came off the tamox before my onc even came back with the news that he had no statistics.  No regrets.  I'm determined not to let that minor glitch in my health rule my future x

  • angelbaby1
    angelbaby1 Member Posts: 27
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    I have been really struggling with this decision the last couple of weeks. even tho i still have more than a year on tamox no matter what (because I have made the decision to at least stay on it for 2 years) it just wont stop playing on my mind. I think i've made up my mind, then read something else and it changes, then i change it back, and on and on it goes. its giving me a headache!! either i go off it for 2 yrs, have baby and finish the last 3 yrs (which my onc tell me would probably not b very effective anyway) or i stay on it for 3 yrs and dont go back on it at all (then worry what if it does help after all?) im just so lost right now and so sick of everything being on hold. i want a baby now!! argh i hate this!!

  • slg76
    slg76 Member Posts: 86
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    Hello again everybody.  Your posts make me feel less alone.  Thanks!  

    my cancer was caught when I was 33 and six months pregnant.  It was a little hard to stage because of the pregnancy but we think it was mid-stage 2.  My nodes seem to be clear.  I took my tamoxifen for a year and a half and then went off for baby. My doctor said I should take it at least a year and longer may be better.  I'm a scientist myself and my onc is a researcher and we both find that there is no data to hep support this super hard decision.  We just don't know what affect taking a break in the tamoxifen will have.  

    I read above about the doctors position in life factoring in to this decision.  So true!  My first oncologist told me I should never have children again...period.  I was furious when I did the research and found no data to support this.  When I pushed the issue with her she said that she believed that it was not socially responsible to have more children knowing that you could get sick again.  How dare she pose her opinion as fact to me???  My current onc is about my age with 2 children and she specializes in breast cancers realted to pregnancy.  She told me with a big smile on her face that if I wanted to after one year of tamoxifen my husband and I could "get busy" and have lots more children.  

    Cloudbaby1... Of course I have talked to my husband about him having to raise the kids alone.  But, the reality is that I could end up with the kids alone just as easily.  My sister's husband was completely healthy and died at 33 of the flu.  Tessmerelda, well said...You never know what life will bring and I'm not willing to let my cancer dictate the rest of my life.  There just isn't any data to say that going on to have more children off the tamoxifen is a danger. Coming off tamoxifen does not doom us to a cancer recurrence.   Given no data on either side of the arguement, I will chose the side that makes me happy!

    My husband is 42 now so we don't feel like we have a lot of years to wait.  Our daughter is 2 1/2 and we would like our children to be close in age.  So I am now 8 months off the tamoxifen.  I'm thrilled that my periods are back and fairly regular.  Weirdly enough since being on tamoxifen ovulation tests don't work for me (they are always positive).  So I am temp. tracking and doing my best to get pregnant in the next few months.  

    Wish me luck.  I'll keep you posted.  

    In the end I think we all have make the decision that gives us the most peace.  easier said than done, I know.  

  • moderators
    moderators Posts: 7,918
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    We too wish you the very best of luck. You've had to make a tough decision and we wish you quick success!!