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Coming off tamoxifen early to have a baby

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Comments

  • Warrior150
    Warrior150 Member Posts: 4

    Hi 

    I was diagnosed with stage one ER+ PR+ HER2-. After a lot of soul searching and with the blessing of my MO. I decided to get pregnancy within one year of my diagnosis. I did not take Tamoxifen or Chemo since my recurrence rate was so low. I am currently 5 months pregnant and am doing well with no signs of recurrence. My MO told me that having a baby doesn't cause the recurrence of breast cancer but can cause existing cancer to grow quickly. While it's not an easy decision, you have to evaluate your life and decide if it's worth the potential risks. I wish you luck.

  • bearcat13
    bearcat13 Member Posts: 45

    Hi all

    I don't come on this thread that often anymore, but when I do it is both lovely and heart wrenching. Rachel, what wonderful news! Congratulations. And Tess as well. Your news has put a huge grin on my face. I wish you lots of joy.

    We've just had our second Christmas with little Finn and it was an absolute delight. Sometimes I just look at him and am astounded at how far we've come since I was diagnosed 5 years ago and things seemed so bleak. For those of you struggling with the decision whether to try for a child or trying I hope very much that your dreams come true in 2014.

    Lisa xx 

  • Enerva
    Enerva Member Posts: 2,985

    Hi all, sorry i havent been in this forum for a wile. Lorax and Tess i am so happy for your great news. Velo i had the test 10 months after i finished chemo. I was felling very sad but then at 12 months my P came back and its been very regular so i am not sure maybe my body is fighting back. The bad news is that my relationship ended so i am single now and that makes thing worse for the chances of becoming a mom. I also had my exchange surgery 2 weeks ago. I am quite depressed with my results but i am still some how hopeful things will be better for me. I am glad to read so many great news here. Also wanted to tell that i never took Tamox i am one of the few that decided to not take any more drugs. So far so good. I am happy my body is back to somewhat normal. :) 

     

  • Cuculi
    Cuculi Member Posts: 82

    hello! I am so happy when I read so many good news! It does give me hope... Haven't been posting but have been reading!

    For those who are trying, keep trying! This thread is full of positive energy that I am sure is contagious!  So we will all get pregnant!

    I am on my 26/37 radiotherapy. I am emotionally exhausted...the worse feeling I have is frustration... Hard to manage,in particular when I feel I am trying to build my life again... My relationship...

    My onc doesn't know about AMH ... I am looking for another one... I want it take all the fertility tests... FSH levels , etc.  And then decide on tamoxifen... But  I want a second child and don't want to wait ... I am 37 so don't think tamoxifen will be good on me. 

    AMH and FSH levels are the two most important right?

    Cyber hugs!

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hi all and happy by I Want This" id="_GPLITA_26" style="background: none !important; margin: 0px !important; padding: 0px !important; border: currentColor !important; border-image: none !important; width: auto !important; height: auto !important; text-decoration: underline !important; vertical-align: baseline !important; float: none !important; display: inline !important; min-height: 0px !important; min-width: 0px !important;" href="#" in_rurl="http://i.txtsrving.info/click?v=SUU6MTY1MTQ6MzQxOm5ldyB5ZWFyOjgxMjlkYmM4NDM5MGVhNzg3M2RiNmI2Yzk5MjY3MzNhOnotMTIwOS01NjcyNDpjb21tdW5pdHkuYnJlYXN0Y2FuY2VyLm9yZzo0MzA1OjQyNDNhMDA3ODYxZDZlODZjMTVmMzg0Mzg4YTRkMThjOjU2OWZlYzI5Zjg2ZjQ3MmNiODBkZWRjMDdjNGIzMDk5">new yearimage!!!

    Thanks so much for all the warm wishes - feeling so blessed.  Had 12 week scan today so all is well!!  Hope all the other expectant ladies are doing well also x

    Rutts - not long now until your baby break!!! eeek!!!

    Slg76 - any update?  hope AF is back and everything is coming back to normal for you x

    Tpettis - how are you? 

    Warrior150 - congrats!! - that is brilliant news!!  always great to hear another success story.

    Ah Lisa so brilliant to hear from you x delighted little Finn is doing so well and as always thanks so much for starting this wonderful thread x

    Enerva - never give up.  I was single when I finished chemo, etc.  Met my hubbi the year after and these things can more very fast when you meet the right person so who knows!!! :)

    Cucili - the very best of luck with all the tests.  Yes the FSH & AMH should be the most important.  My onc referred me to a fertility specialist who runs these tests but id imagine maybe your GP might do it?  worth asking.  Yes radiotherapy can be deceptively tiring - and I only did 15 sessions but I know that feeling.  Nearly there though for you thankfully!!!

    Fingers crossed for you all my friends xxx


  • Enerva
    Enerva Member Posts: 2,985

    Wow Tesmeralda thanks that really helps to know its possible, i really hope i meet someone, fingers crossed lol so far i am ok my P is regular again so feeling somewhat normal ;)   

  • h0pe
    h0pe Member Posts: 46

    Hi I've been reading your thread all evening. You all have such inspirational stories. I was dx'ed in 11/2013; post bilateral mastectomy 12/2013. I'm scheduled to begin chemo mid-February.  I've been debating whether or not to do a round of IVF before chemo. I am apprehensive b/c my tumor was ER+, but after reading your thread, I have decided to move forward with IVF. Thank you for posting your stories! :) 

  • Enerva
    Enerva Member Posts: 2,985

    Hi hope, yes please if you have the chance do what ever you can do before chemo to preserve any chance of becoming a mom. 

    Good luck :)  

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hi Hope,

    That's great that you have the option to defer chemo.  I had absolutely no choice but to progress with no time for egg collection. I guess even if you can collect the eggs before chemo then that is super.  I wish you every success and look forward to hearing good news!!

  • h0pe
    h0pe Member Posts: 46

    Tessmerelda… - Thank you. They didn't give you the option to defer chemo? I wonder why - you were stage I. I'm supposed to start injections tonight. Honestly, I'm so scared to inject myself with hormones! I'm on letrozole so that will somewhat control the estrogen, but it still makes me nervous. I see that you were dx in 2008 - woohoo! It's so nice to hear back from survivors who are years out. Thank you for still checking in. From a newly dx'ed perspective, it gives us a lot of hope. :) Especially reading your story! I actually was telling the oncofertility specialist about your experience.  It is amazing. So happy for you. :)

  • h0pe
    h0pe Member Posts: 46

    Enerva - thank you for the kind words! I hope your period comes back soon too! Keep us posted. :) 

  • TessmereldaC
    TessmereldaC Member Posts: 81

    hope.... I was grade 3 and had an aggressive form so time was of the essence. So instead a too zolodex to surpressy ovaries while on chemo and luckily dat seems to hav fine the trick. I worried so much about those injections too but u know the needles are so so tiny I didn't even feel it most days. All worth it x u must be so excited!! Fingers crossed for you xx

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    I'm so glad I found this thread! I'm 28 and was diagnosed a month ago. My cancer is very aggressive so I chose not to pursue embryo freezing before starting AC chemo a week ago. My onc and the fertility specialist I talked to said that my chances of getting pregnant after treatment were pretty good, but that would require me to, you know, be alive (those are my words, not theirs). There were some concerns about taking ovarian suppressing shots so I never pursued that either. I wanted to hit it with all I have now and figured I'd pick up the pieces later. The thought of never becoming a mother has been the most distressing thing about this whole thing, as I've always wanted children and thought I'd have plenty of time. I find myself kicking myself for not accepting my now-fiancee's proposal when he asked only a few months into our relationship (although I know it wouldn't have been the best idea for us to rush so fast). So it's encouraging to see women a good 5-10 years older than me at DX getting pregnant and having children!

    One question though. Are there any success stories from women who had not-so-great numbers? I'm doing chemo before surgery so I don't have exact numbers, but I'm at least late Stage II (more likely Stage III) with lymph node involvement. My onc also thinks I may have a mapped or unmapped genetic mutation (haven't had BRCA testing yet but will do once my new insurance kicks in). Most of the ladies here seem to be earlier stage. If I already had a child, I wouldn't even be considering getting pregnant in the future, but I don't and I really want to be a mother, and see my wonderful fiancee be a father.

  • angelbaby1
    angelbaby1 Member Posts: 27

    Bearcat its so wonderful to hear that everything has been going well for u. I have followed this thread for a couple of years now and I love when those of u who posted early on check in with your positive stories.

    Rutts not long for u now. im a little excited for u to come off tamox because it means there are only a few more months left for me Happy

    BadAtUsernames welcome to the thread. im sure there are some ladies on here who can identify with your stage and grade. Good Luck!!

  • Rutts
    Rutts Member Posts: 50

    thanks angelbaby1 I'm feeling really excited at this moment in time but had a few little moments where I've done the 'what if this happens' but I'm just going to keep positive. I have a really good feeling about it (most of the time)! I've also got the issue of being high risk for pre-e and HELLP syndrome (nothing to do with the breast cancer) so I know I will be monitored very very closely. 

    Welcome Badatusernames I hope you manage to get the information your looking for. I was only stage 1 but there's a ? on my grade as 1 of my docs said grade 2 and another said grade 3 so I've got to double check this when I next see them. It's an awful roller coaster to ride but keep positive. 

    Hope everyone else are doing well :) 

  • Katnat
    Katnat Member Posts: 5

    Hi ladies,

    First of all I wish you all success with everything you are going through right now and to be healthy and to stay healthy.

    I'm a single 30 years old and was diagnosed with BC triple positive 4 months ago.

    Back then, the future motherhood concerned me more than the cancer and I couldn't imagine not preserving eggs/embryos .

    I had a lumpectomy and did a egg harvesting before the chemo but unfortunately the first cycle wasn't successful and I did another one (my fertility doctor was to gentle with the hormones).

    I'm amazed the there are some oncologists that not allowing women with stage 1 to preserve eggs..even if the cancer is aggressive as long if there is no tumor in the body..but I'm not a doctor.

    Regarding Tamoxifen, researches are showing that there is lower numbers for reoccurrences with 10 years treatment and this is the approach today..add your oncologist.

    Wishing you all health, peace of mind and success.

    P.s.

    Sorry for any English mistakes.

  • bearcat13
    bearcat13 Member Posts: 45

    hi bad at user names, 

    My tumour was over 6cm with one lymph node involved. It was weakly hormone sensitive but aggressive. I went on to have a son who is now 1.5 years old. Best of luck to you Lisa x 

  • Cuculi
    Cuculi Member Posts: 82

    Hello ! 

    I love reading and reading all these stories. Hope to be there soon... I turned 37 on December and now I am finishing my rads. February I should start on tamoxifen but have not decided yet if I will.  I cannot discuss with my husband because if I mention my doubts he just thinks I am crazy. I truly is understand his point but he just can't listen to mine.  I just "talk" to you guys because I have always felt heard and I believe that is how everyone feels... Heard and supported... So many success stories makes us feel better. 

    Good luck to all of you who are pregnant and for the ones who are trying..keep trying I am sure you will get pregnant... Ask said before, this thread is contagious!

    Good night! 

  • sakura73
    sakura73 Member Posts: 76

    badatusernames I had a multi-focal tumour with lymph node involvement which made me stage 2(b). It was 99%+ ER. My son is 2 and a half and I am now 20 weeks pregnant with his little sister. Both natural conceptions post chemo.

    Best of luck to all going through fertility preservation or treatment right now.

  • h0pe
    h0pe Member Posts: 46

    sakura73 - omg! Congrats! Love your story! Do you mind if I ask how old you are?

  • sakura73
    sakura73 Member Posts: 76

    I don't mind at all! I am 40, was 35 when diagnosed, 36 when treatment ended, and 38 when my son was born.

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    Lisa and Rachel, I didn't realize that you both had lymph node involvement. That makes me feel more hopeful.

    Tess--how is your pregnancy going?

  • ben50
    ben50 Member Posts: 13

    Hi katnat,

    My wife (26) is triple positive too. We also really struggled with what to do about our fertility. Our BC was stage 2, however, so we did not want to delay chemo with egg/embryo fertilization and rather decided to roll the dice on the functionality of her ovaries. So we're probably going to adopt during the first 5 years of tamoxifen, take a year or so break to try to conceive number 2, and then go back on for the additional 5 years. 

    It sucks I know! Smile

  • Cuculi
    Cuculi Member Posts: 82

    Thanks Tessmeralda! I will go to a fertility doctor.  

    Regarding tamoxifen... I need to know first how am I doing before making a decision to start on it.  I am 37 and cant imagine not being fertile and affecting my relationship even more...It is just a huge puzzle I just need to decide what I will do...

    How do doctors establish if a cancer is aggresive or no?

    Good luck with the pregnancies!!! :)

  • h0pe
    h0pe Member Posts: 46

    Cuculi - usually in the path report, it will have the grade of the tumor which is an indication of how aggressive it is. Good luck with everything! Just wonder, how were your SE on chemo? 

  • Cuculi
    Cuculi Member Posts: 82

    Thanks Hope! Since I had 4/24 nodes, my onc said that was more important than any grade or stage.  After that I just focused on my treatment and trying not to think of BC (quite hard though... in particular at home with my husband).  

    My SE on chemo were not that bad.  With AC actually better than taxol.  Homeopathy has helped me lot.  Finished chemo on December, rads today and hope to recover my energy completely... and hope to recover my arm as well :)

  • slg76
    slg76 Member Posts: 86

    Hello everybody.  Sorry to be MIA for so long.  I've been a bit down in the dumps since my miscarriage in October and haven't kept up with people as well as I should.  Hi to all the new ladies!  I completed my treatment for breast cancer 3 years ago and have been trying to conceive #2 since coming off tamoxifen 18 months or so ago (I took tamoxifen for 18 months).

    It has been a stressful but interesting few months.  After my miscarriage my period seemed to up and disappear.  Most women get a period in about a month.  I finally got mine today....day 112 since the miscarriage.  Whew am I glad to be having a cycle.  My doctor drew labs about a month ago and my hormones came back even more wacko than we expected.  My FSH came back at 100!!!  For those of you not familiar, that is a very bad sign for fertility.  Doctors start throwing the word menopause around when your FSH gets to 15.  At that point my fertility doctor said that she didn't want to do any more medication with me and that I had the same chance of getting pregnant as any other woman going into menopause, 5% chance of getting pregnant from a spontaneous ovulation.  This was such disheartening news.  But, I think that no matter how screwed up my hormones are they were just that screwed up a few months before when I did get pregnant.  I did it once, I can do it again!!!  Now that I'm having a cycle I will have my labs redone this week.  These labs are supposed to be done on day 3 of a cycle. 

    I've been doing acupuncture, herbs, yoga and cleaning up my diet.  I have used acupuncture before with good success and I'm kicking myself now for not going back to my acupuncturist sooner.  I really believe that it is her work that caused my period to come back.  She did the same thing for me after coming off tamoxifen.  Lesson learned.  I will not stop my acupuncture treatments again.  I'm feeling much more hopeful about my fertility and believe I will be pregnant again sometime soon :)  The experience of my miscarriage has really changed the way I feel about my body and how I'm choosing to go forward with fertility issues.  I feel much more in tune with my body and believe that my body can function normally if put in the work treat my body well.  

    Hope: I read your post and I'm encouraged to hear that you fertility doctor is keeping you on letrizole during your hormone injections.  Sounds like your doctor is familiar with women in our situation.  I have my fingers firmly crossed that you make a big fat healthy fertile egg! 

  • Enerva
    Enerva Member Posts: 2,985

    Congratulation SLG76, hope you get your second child soon.   Fingers crossed ;) All these positive post give me hope. 

  • Cuculi
    Cuculi Member Posts: 82

    Hello!

    I wrote yesterday an email and lost it!  

    Slg, I can imagine how you feel... I think we all can... this is why this group helps us all :)  I am postive you will do it again... the mind, what we think is so strong... in general the attitude and you have definitely the positive attitude even though you get down sometimes, like we all do.

    We have to follow what we believe helps us! I have been doing acupuncture December and will start soon again... I believe in homeopathy as well and has helped me soooo much.  Thus, I send you my best vibes for conceiving your second child.

    I understand you will start a fertility treatment? IVF? 

    On the other hand I got back my period.  My last chemo was December... I feel my body is coming back to normal.  However, tamoxifen should start in theory by the end of February but I want some fertility check up before I start.   

    Take care, have a great weekend!!!

  • budrfligal13
    budrfligal13 Member Posts: 105
    Hi ladies. I was hoping a few of you could weigh in and advise on my situation. I am now almost 4 months out from my last chemo and on Tamoxifen for about 1 month now. I am 38 and have no children. I was unable to freeze eggs before starting chemo due to my period being irregular pre-chemo. (I had the apt to go on the 3rd day of my period, but it came 2 weeks earlier than planned and MO wanted chemo right away) I heard that Tamoxifen prevents you from getting a period. I also hear that it does not. I can't get a straight answer on this. I realize everyone is different. Also, my FSH level was extremely high last time we checked. Doctor didn't say for sure that I was in REAL, FULLBLOWN menopause or not. Again, I am 38. So I am wondering what are my chances of becoming pregnant when I stop the tamoxifen if I stay on it the 5 years as indicated. I'll be 43 then and already have damage from chemo. Please help. As if cancer wasn't enough!!!! Do I stand better chances if I stop the tamoxifen now, wait to get a period, freeze the eggs, and then resume the tamoxifen. The doctor's are okay with doing that, provided I get my period back rather quickly. But what if it takes months? No clear advice.....

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