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Coming off tamoxifen early to have a baby

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  • angelbaby1
    angelbaby1 Member Posts: 27


    Sakura - congratulations! that's wonderful news.

    Enerva - sorry to hear your results aren't what u were hoping for. but are u still on tamox? I didn't think fertility/hormone tests were accurate while on tamoxifen??

    Andreamia - how did u know u had cysts? were they painful or found by chance?

    I suppose I am just looking for an excuse as to why I've had no period since april. could cysts have something to do with it? could it just b the tamoxifen playing with my hormones? I really don't want to accept the possibility of menopause.

    just wondering - if chances are low (but not impossible) that I can conceive, what are my options to help things along given that I didn't do IVF beforehand. is there anything that can still b done?

    Thanks.

  • TreadSoftly
    TreadSoftly Member Posts: 88

    congrats Sakura! Xx 

  • Enerva
    Enerva Member Posts: 2,985

    Angel, don't give up, you are still young and your body will most probably fight back. My body is giving up. I am not on Tamox I refused it due to been 38 at the time of dx and at that time I had hopes.  I now learn that the reason my p stopped is due to sign of menopause. Before it was chemo menopause and then period came back 12 month after last chemo. It was regular for 6 months then in April it stopped.  Doctor thinks if it doesn't come back in one full year I may never see it again :( levels indicate my Estrogen is low so maybe that is it for my body.  

    Be positive you still have a chance ;) I am sure yours will be back, try to eat health and you should see it back. Sending you hugs 

  • SKD
    SKD Member Posts: 35

    hi ladies! 

    I haven't posted in a long while. So long story short.. We used our frozen embryos last July, 3 years post chemo, since we tried for 2 years to get pregnant naturally with no luck and one miscarriage (doctor said it's okay for me to be off tamox). The frozen embryo transfer didn't work so we were going to do another round in December. I was a little hesitant since they pump you full of estrogen and progesterone but then we found out in November that we got pregnant naturally and I am due in the next 4 weeks!! I remember stalking this board wishing and hoping we will get pregnant and we did!! So don't give up hope!!

  • andreamia
    andreamia Member Posts: 37

    angel baby, I found out I had a cyst because I had a pelvic ultrasound when I was having bladder pressure. This was before I started tamoxifen. After I started tamoxifen for a month I had a repeat ultrasound to see if my cyst went away (they like to monitor complex cysts just in case) and it so happened that I developed two more and the first one got bigger. I'm guessing that happened because of the tamoxifen and my onc agrees. It is a side effect for 11% of women on tamoxifen. It is natural for a woman to have a cyst around her cycle and they go away on their own without any problems. However, mine were painful and ruptured. It is likely improbable that having cysts would cause you not to have a period. Sometimes when women have many cysts it can cause a heavier than normal period. It would be more likely the tamoxifen. I know of women who did not have periods on tamoxifen and their periods came back after they stopped. I had my first period two weeks after I stopped tamoxifen which would have been four months post chemo.

    I also did not do IVF before chemo due to cost. I have not had kids yet and hope my period was a real one... I definitely feel your worry and hope you get your periods back soon

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hi all,

    Rutts - I'm so so sorry for your loss but I'm so proud that you are taking the positive and focusing on the potential for another pregnancy - that is definitely the way to go and I will keep everything crossed for good news for you xx

    Sakura - big congrats on your little lady!!! Another fab success story!!!

    Stephaniegee - We had a similar experience.  18 good embryos and after day 5 it was whittled down to just two.  It was very disheartening at the time but they implanted one which will soon be a new born baby in 5 weeks!!  The other is in a freezer and I'm very hopeful that may just be my number 2!!  sometimes 1 is all you need so keep the faith x  Slightly different in that I didn't use a surrogate but they would only implant 2 in a surrogate anyways as far as I know so fingers crossed that does the trick.

    SKD - oh my god - big congrats to you!!  I'm due in 5 weeks!!  Keep me posted!! :)) yippee - more success!!

    Angelbaby & Enerva - keeping everything crossed for you both that periods will return - some times it takes longer than you might think.  Never give up hope xxx

  • Deegee
    Deegee Member Posts: 1

    hi all,

    Can't tell you how happy I am to have found this thread. 

    I was diagnosed in Dec 2012 when my baby was 6 weeks old. I've been on tamoxifen for exactly a year now and am now thinking about whether to stop early to have another child. My oncologist mentioned the 2 year minimum requirement but then told me I'm eligible for a 10 year course.

    My concern is the time I'll be off the tamoxifen and whether 5/10 years total is enough or whether it has to be 5/10 years straight. I also wondered whether any of your consultants had suggested a maximum length of time to come off tamoxifen eg. 2 months before trying and then if it doesn't happen within 6/12 months to go back on? 

    Am taking so much hope from all these positive posts. Can't wait to have a proper look around the other discussions. xx 

  • stephaniegee
    stephaniegee Member Posts: 42

    Hi Deegee,

    This is my experience so far, you can't compare yourself to other stories you read in threads. Each case is different and you have to get the information from your doctor. But you also have to keep in mind that different doctors have different opinions. My doctor is very conservative and he told me that he would not recommend my going off Tamoxifen for 4-5 years because once you're off it's for a few months and that's risky. He explained the highest chance for recurrence is within the first 5 years from diagnosis and so it would be best to hold off babies until then. To me, that's a little extreme and me and my husband agree that we aren't going to live our lives afraid of recurrence. My doctor also explained that there are not enough studies or clinical data yet about young breast cancer survivors and pregnancy/ivf.  At the end of the day you have to get all the facts and then make the decision you're most comfortable with. But you can't make decisions based on other people's stories, what's right for one may not be right for another. 

  • Nigelsmommy
    Nigelsmommy Member Posts: 3

    Good morning ladies!

    I've been reading this post for a few weeks now.  I've finally decided to introduce myself.  I'm 38 years old, married with a 3 year old son.  We were in the process of trying to have another child when I was diagnosed.  I had two miscarrisges last year due to low progesterone.  My diagnosis...IDC, Stage IIa, ER+. PR+, Her2 -, node negative.  We're in the process of freezing embryos...I'm actually on Day 5.  I had a lumpectomy two weeks ago.  I meet with the oncologist in July and I'm assuming chemo will start shortly after.  But I'm super concerned with coming off of tamoxifen early.  So the fertility doctor said most women stay on for 3 years before getting pregnant and continue on tamoxifen after the baby is born.  I'm fine with that.  My fear comes from me being highly ER+...I think it was 90%.  I'm PR+ but like 30%.  I guess I need to get smarter on % of recurrence but that information doesn't seem to exist.  

    My husband and I have discussed surrogacy.  On top of it being illegal in NY, it's expensive if you use a "stranger"...to the tune of $100k.  I don't want cancer to take away my dreams of having another baby but I also don't want a recurrence to take me away from my snuggle muffin that's here already.

    I'm happy to read about the success stories!  They really give me hope!  I was wondering how hormone sensitive you all were (if you know) and what your oncologist recommends based on your individual sensitivity.

    Thanks in advance!!

    T

  • Nigelsmommy
    Nigelsmommy Member Posts: 3

    Good morning ladies!

    I've been reading this post for a few weeks now. I've finally decided to introduce myself. I'm 38 years old, married with a 3 year old son. We were in the process of trying to have another child when I was diagnosed. I had two miscarrisges last year due to low progesterone. My diagnosis...IDC, Stage IIa, ER+. PR+, Her2 -, node negative. We're in the process of freezing embryos...I'm actually on Day 5. I had a lumpectomy two weeks ago. I meet with the oncologist in July and I'm assuming chemo will start shortly after. But I'm super concerned with coming off of tamoxifen early. So the fertility doctor said most women stay on for 3 years before getting pregnant and continue on tamoxifen after the baby is born. I'm fine with that. My fear comes from me being highly ER+...I think it was 90%. I'm PR+ but like 30%. I guess I need to get smarter on % of recurrence but that information doesn't seem to exist.

    My husband and I have discussed surrogacy. On top of it being illegal in NY, it's expensive if you use a "stranger"...to the tune of $100k. I don't want cancer to take away my dreams of having another baby but I also don't want a recurrence to take me away from my snuggle muffin that's here already.

    I'm happy to read about the success stories! They really give me hope! I was wondering how hormone sensitive you all were (if you know) and what your oncologist recommends based on your individual sensitivity.

    Thanks in advance!!

    T

  • Rutts
    Rutts Member Posts: 50

    hi Deegee and nigelsmommy

    Everyone's stories are very different because every doctor/oncologist has different views and opinions on these subjects. My doctor was happy for me to have a break after 2 years of taking tamoxifen. I'm now on my break and although I got pregnant within 3 weeks of coming off the medication (a bit sooner than we should have) I did miscarry but I'm happy as it means I can get pregnant. 

    I did a lot of research before I made the desicsion to do this as I have a 10year old to think about. Most places I read that it's the first 2 years that are higher risk for reacurrance. I have to see my doctor in march 2015 so I'm hoping to be pregnant by then as that's when they are giving me a time scale to go back on tamoxifen.

    Xx

  • Cuculi
    Cuculi Member Posts: 82

    Hello!

    I love to read the posts... I feel comforted and understood.

    Congratulations Sakura!!! You must be sooo happy!

    As I always say, these stories give me so much hope.

    Nigelsmommy: I am 37, HR PR positive and 3 nodes positive.  Diagnosed May 2013. Every oncologist have different opinions.  Guess what, I am changing to one that thinks more like me! I have decided to take tamox for 1 year.  I want to have a second child and my son to have a brother or sister, whatever happens to me, in the long run I hope... I want my son to have a sibiling.  That is my decision. I have no embryos frozen, I just have an egg frozen so I am not waiting till I am 42. That is my decision. I am so much relaxed and less stressed now that I feel good for what I have decided to do.  I feel finally that everything has started to "flow" in my life. So you just have to talk to your onc and at the end it will be your decision.

    Gotta sleep for tomorrows work!

  • LisaInNY
    LisaInNY Member Posts: 2

    Hi ladies! 

    I've been reading all your posts and wanted to pop in and introduce myself. I'm 38 years old, married no children. We tried to get pregnant a few years with no success. 2 failed IVF's and 2 failed IUI's. I was diagnosed December 2012 stage 2A ER/PR+. I did chemo and started tamoxifen Oct 2013. I saw my oncologist yesterday who gave me permission to stop tamoxifen now. I'm allowed to start trying 2 months from now so that the tamoxifen is out of my system. I do have 2 frozen embryos but not sure how I feel about all those hormones. My husband and I agreed to try naturally for 2 months. If nothing happens then try an embryo transfer. If that doesn't work out then it wasn't meant to be because I can't be off tamoxifen for too long. Oh and chemo stopped my periods but they came back on their own after chemo. I'm curious if my  ovarian reserve is low but I guess I'll use ovulation sticks to help determine if I ovulate. Just wanted to say reading all your experiences is such a great help. It's comforting to know I'm not alone. I wish you all the best of luck!

  • h0pe
    h0pe Member Posts: 46

    LISA and everyone else - thank you for sharing! I have a question - did your period return while on tamoxifen? My MO told me tamoxifen messes with your periods also...

    Thanks!

  • TreadSoftly
    TreadSoftly Member Posts: 88

    Hi Lisa!

    Welcome to the group! Wishing you every success as you try for baba. I was stage 2A at diagnosis too, did tamoxifen for 3 years before taking a baby break in Jan 2013. Waited 3 months to let tamox leave my system & fell pregnant after 4 months of actively trying. Had a lovely baby girl who is now 8 weeks old & going back on tamoxifen next month to do another 2 years. Will mean I've been off tamox for 18 months in total. 

    Baby dust to one & all xx 

  • LisaInNY
    LisaInNY Member Posts: 2

    h0pe - I started tamoxifen on 10/10/13 and my period returned in Feb 2014. I've been getting it every 30-45 days ever since. Even before cancer I was never regular anyway. Yeah I've heard it can mess with your cycles.  

    TreadSoftly - Congrats on having a baby girl! How lovely and exciting?! Your story inspires me and gives me hope! Can't wait until September rolls around so I can start trying haha. 

  • Cuculi
    Cuculi Member Posts: 82

    Hello! Hope everyone is doing ok, in particular the new moms!!!

    Slg, where are you? Hope you are doing well.

    This is my 4th month on tamox and feeling well.  Can't complain :) Hope it continues like that and hope the tamox will not mess up too much with me so I can follow my plan on a second child.

    Take care!

  • andreamia
    andreamia Member Posts: 37

    Cuculi, glad the tamox is working for you :)

    After much discussion I have told my MO that I am not trying tamoxifen again and she understands. The cysts are too much of a risk as they enlarged my ovary last time. If I understand correctly, multiple cysts and enlarged ovaries can lead to twisting of the ovary and killing it. Not something I wanna risk obviously since I still want babies. My MO said that right now having a baby is a personal decision and it is up to me. It has been six months post chemo for me this month. I have had periods for three months now and my two most recent ones have been regular. I am contemplating TTC this fall after I have a few more regular cycles. 

    I was wondering if I should see a fertility specialist. Is that something I should do if I am not having success trying to conceive naturally? Should I try on my own first? I have no idea where to start here. Should I take some prenatals? I heard that is important to take even before TTC… Oh my, sorry if I sound like a lost little duck here.

  • andreamia
    andreamia Member Posts: 37

    Cuculi, glad the tamox is working for you :)

    After much discussion I have told my MO that I am not trying tamoxifen again and she understands. The cysts are too much of a risk as they enlarged my ovary last time. If I understand correctly, multiple cysts and enlarged ovaries can lead to twisting of the ovary and killing it. Not something I wanna risk obviously since I still want babies. My MO said that right now having a baby is a personal decision and it is up to me. It has been six months post chemo for me this month. I have had periods for three months now and my two most recent ones have been regular. I am contemplating TTC this fall after I have a few more regular cycles.

    I was wondering if I should see a fertility specialist. Is that something I should do if I am not having success trying to conceive naturally? Should I try on my own first? I have no idea where to start here. Should I take some prenatals? I heard that is important to take even before TTC… Oh my, sorry about all the questions.

  • TreadSoftly
    TreadSoftly Member Posts: 88

    hi andreamia, 

    I can understand why you were not keen to try tamoxifen again with the ovarian cysts. 

    Re fertility: I think it's important to get the basics right before considering a referral to a specialist. i.e. Both you & your partner being a healthy weight, eat good healthy wholesome foods, regular exercise (but not excessive) & of course, lots of bedroom activity at the right time of the month! A key factor is your age too, with consideration of referral to a specialist earlier the older you are. Are you having regular periods now? May be worth investing in ovulation indicators if your periods can be irregular?? 

    Wishing you good luck, xx 

  • TessmereldaC
    TessmereldaC Member Posts: 81

    andreamia - I agree with Treadsoftly.  I was 36 when we decided to try and we went straight to a specialist as he was able to start the process of doing all the relevant tests - AMH, D&C, etc and it let us know where we stood and I think for me personally it let me know that everything as ok and it would happen.

    Cuculi  - I have been wondering about Slg76 as well - it's been a long time and I hope she is ok.

    So for my news. My due date is tomorrow.  Not hugely relevant now that I sit here with my week old son in my arms :)  Charlie was born on 23rd July weighing 7lb 13.5oz and is a absolute dote!!!  HappyI am breast feeding cos I want to give him the best start and also I have read and researched the benefits to me also in BC prevention.  We'll see how it goes - challenging with one breast to offer but seems to be enough supply in one. 

  • TreadSoftly
    TreadSoftly Member Posts: 88

    Awww, congrats tess! That's wonderful news! I'm delighted for you! Welcome to the world baby Charlie! And I'm delighted that breast feeding is working out for you too! 

    Im currently back on tamoxifen for the past 10 days after I had normal mammo & ultrasound (happy days!). Just the 2 years to do now before start thinking about baba no 2! 

  • andreamia
    andreamia Member Posts: 37

    Thanks for the advice ladies! Tess, congratulations that is wonderful news. It sounds like many women have successfully breast fed with only one breast. I am so glad I found this thread! Reading all these wonderful success stories has given me hope. Thank you everyone.

  • stephaniegee
    stephaniegee Member Posts: 42

    Hi everyone,

    Just wanted to update on my status and see if anyone had any insight for me. I have done chemo and am now halfway through rads. Prior to chemo my husband and I froze 11 embryos, which turned into 2 after thawing and testing. We have surrogate and we have done two transfers, both of which failed. I will be starting Tamoxifen at the end of the month. So now we have new decisions to make 

    1) donor eggs 2) delay tamoxifen until I can do another egg retrieval (which could be 6 months) 3) or go off tamoxifen after I start.

    My oncologist was not helpful at all, telling me I had to be on tamoxifen by september for 5 years and nothing less. He told me I shouldn't even adopt for at least 4-5 years. I am 32 years old, my husband is 45, I do not want to wait!! 

    Any opinions?

  • Cuculi
    Cuculi Member Posts: 82

    Congratulations Tess! You must be feeling so so happy with Charlie!  I know women that have breastfeed successfully with one breast, so I am sure you will do great!

    Stephaniegee: doctors have so many different opinions... Maybe you can ask for a second opinion.  As one of us mentioned in this forum, we are all different and at the end it is our own decision.  There is nothing written down.  Thats life.  I have decided to go to another oncologist who understands me a lot better.  My former one (which I probably still visit just because of the insurance check ups but not for his opinion) does not "see" life the way I do.  He was even thinking about ovaries supression... didnt even remember, not even written down on my file, that I want to have a second child.  The new one understands me a lot better and I was able to talk, to discuss.  I have one 1 egg frozen.  I am 37 and have decided that I will stop tamox next year.  The new onc respects my decision. My husband does not agree on donor eggs and egg retrieval was not an option.  So I will stop and try naturally next year. I feel good now and just try to think about work and my 3yr old child.  

    good night and take care!

    Slg: where are  you?

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hi all,

    Just came across this article and I said id share.  It's a recent study about the effectiveness of Tamoxifen based on the type of light in your room at night (i.e. fully blacked out versus dim light) - sounds weird but see what you think..........

    http://blog.thebreastcancersite.com/study-shows-dim-light-may-affect-tamoxifen/?utm_source=social&utm_medium=bcsfan&utm_campaign=study-shows-dim-light-may-affect-tamoxifen&utm_term=20140810

  • Eddie1981
    Eddie1981 Member Posts: 1

    Thank you all for your posts, they have filled me with huge encouragement, and congratulations for those of you who have had little ones. 

    I am only 34 years old, but got married two years ago, and was trying for children when I was diagnosed. For me my world came to an end. I have always wanted children and so has my husband. I have been on Tamoxifen and Zoladex now for the last 18 months, finishing Zoladex now and continuing Tamoxifen for the next six months and then am desperately hoping my oncologist says I can have a break. 

    I really want to break for a child, but have the huge fear that the cancer will come back when I am pregnant, as eastrogen receptive and also I have the BRCA 2 gene. Did anyone else have the same concerns? 

    Thank you again. x

  • TreadSoftly
    TreadSoftly Member Posts: 88

    dear Eddie,

    Yes, I think your concerns are pretty normal for any of us who have had to make the decision to come off tamoxifen to try to conceive. My oncologist was really supportive of my decision to do so after 3 years. He explained that there is no increased risk of cancer returning during pregnancy as both oestrogen & progesterone rise simultaneously. It is when there is unopposed oestrogen, ie oestrogen high without the high levels of progesterone also, that increases risk. Studies done show that BC survivors who have conceived after treatment actually do better than those who didn't. There could be a 'healthy mother' effect also, in that only those who are doing well post diagnosis & treatment, earlier stage etc, go on to try to conceive. 

    My genetic tests were negative so cannot comment on that. 

    Wishing you every good wish, I hope you get your dream to have a baby. Talk openly & frankly with your oncologist. 

    X

  • FollowYourHeart
    FollowYourHeart Member Posts: 2

    Can anyone who had bilateral mastectomy share your experiences during early pregnancy?  I'm TTC, so I got myself familiar with all the signs of early pregnancy - one of which is breast tenderness. But since I have no boobs, I'm just wondering if anyone who had bilateral mastectomy & went through pregnancy is willing to share their early pregnancy experience. I honestly don't know what my regular cycles are since I got off the pill about 3 months ago. I used to be 28 days regular before chemo/surgeries, but then after chemo, they put me on the pill for various reasons. I've been on the pill for, I think, 5 years (I'm a 6 year survivor now). If I presume I have 28 days cycle back, then I'm 5 days late, but home pregnancy test was negative when I tested a couple days ago. But, I just can't shake off this feeling of "I think I'm pregnant". No sign of period coming... No PMS. I normally have bad PMS (which was one of the reasons they put me on the pill). And, my nipple areas has been pretty tender. Since I had nipple sparing bilateral mastectomy, my nipples are the only breast tissues I have. I mean it's a strange pain sensation since all the nerves are cut off on my boobs, but somehow I feel very tender on the nipples when I touch. I never had this feeling before while I was on the pill. My next doctor's appointment is on 9/17, but this waiting is driving me crazy. I tried to see if anyone who had bilateral mastectomy had this type of sensation, but I couldn't find any. Fellow survivors, what was your early pregnancy symptoms (focusing on the boobie area) if you had bilateral mastectomy? Please share your experience. Thanks!

  • TreadSoftly
    TreadSoftly Member Posts: 88

    I'm sorry, follow your heart, I can't help you as I only had a lumpectomy. But I had 'a feeling' I may have been pregnant & fatigue like I never experienced before!! I had to crawl into bed every evening, feeling completely exhausted, & I would usually be full of energy! Maybe take a test again in another 2-3 days if no period? Fingers crossed for you! 

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