Coming off tamoxifen early to have a baby
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Hi ladies!
I have been reading this thread for quite some time, it really fills me with hope!
Jen - Congrats! Such wonderful news, I'm delighted for you! I bet the 2 little girls are just adorable, lovely names too!
I'm 32, Irish too! I was diagnosed aged 29 & have just done 3 years of tamoxifen. I really want to try for a baby now so stopped it 2 weeks ago... Yes, it was a difficult decision but my Onc was completely supportive of my decision, after I had 2 years done... I have had regular periods on tamoxifen so hoping there won't be any issues conceiving... Onc wants me to finish the 2 years of tamoxifen after, which I'm happy to do...
Best of luck everyone, let's hope there will be many more successful stories in the months to come!!0 -
OK ladies ... Aunt Flo is here!!! OMG
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I hear you TessmereldaC! Thanks for your reply. I am a strong believer in gut feeling too and I just have a feeling I'm not going to be able to wait the full five years. I think that all the while our brains are whizzing round and processing information we actually have the capacity to make important decisions somewhere deeper without even knowing we've made them!
angelbaby1 - I'm not sure how helpful this is, but I feel exactly the same! At the moment I'm thinking I'll stay on for 3 years minimum (am nearly at two year mark now - will be 33 this year), but I was all geared up for trying to get pregnant this year. Everywhere I go I see people pushing prams and it's driving me crazy!
sig76 - Great to get your perspective. I think we're all on the same page in not wanting a blip like BC to dictate the course of our lives. Hurrah! My fingers are crossed for you and TreadSoftly - so exciting!
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Hello,
My husband and I are thinking about coming out of Tamoxifen early to have a baby too. Hopefully my onc will agree and let us.
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Hi ladies
Thank you all so much for this thread.... I have read every single post. I sat at my chemo unit yesterday having my herceptin (number 8) and spent the whole time reading your posts!
It was so nice to find other people in the same or similar situations because I honestly thought for a while there I was the only one in the whole world going through this dilemma.
I am 37 now, diagnosed at 36 and I had 6 rounds of chemo, a mastectomy and lymph clearance and am in the middle of radiotherapy at the moment .
I have a beautiful 19 month old daughter and my husband and I were already thinking of baby number 2 when I was diagnosed! We had fertility treatment at Barts and now have 7 frozen embryos shivering away in a freezer somewhere!
I have only been on tamoxifen for a month but am already thinking of when to stop it to try for baby number 2. My onc is old school and believes that everyone should stay on tamoxifen for the full 5 years and she certainly cannot understand my need to have another child (she is childless herself) so I feel like talking to her is a bit like talking to a brick wall!
I feel there is some light at the end of the tunnel though as I've just found out she is retiring and I'm optimistic whoever I see in the future will have more of an understanding of my predicament!
I know that after just a month of taking tamoxifen it is far too early to think about stopping but reading these posts has helped me see that there is hope for the future!
Claire x0 -
Hello all. I'm so happy to come across this forum. I am 37 and BRCA+. Was diagnosed with bc right side just before my 36th birthday. My dh and I were ttc at the time. Now after bi lateral mastectomy, chemo, rads, and tamoxifen for a year and half, fertility is again on my mind.
My oncologist feels that the longer you are on tamoxifen, the better. She also says the new research indicates an increased benefit being on tamox for 10 years, not just 5. Sigh....
When I presser my onc, she said some research suggests that you have to be on tamoxifen 2 or 3 years to realize a benefit, and at that point some women go off tamox, ttc, and there is no evidence of increased risk of recurrence or reduced survival.
I am considering going off tamox to get pregnant, but worried about it. It's weighing being happy in life with the family you want to have vs. not being so happy but protecting your life. What to do?
I am interested in learning what other oncologists/doctors are telling you? Appreciate any insight you have!!
Tamox-in-Toronto
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Hi Curlclaire and Tamox-in-Toronto and welcome to the board. I'm glad you've enjoyed reading all the posts - it's nice to know you're not on your own isn't it?
Sorry to hear that your onc isn't very understanding Curlclaire. My onc seems very relaxed about coming of Tamoxifen, even talking about coming off after 18 months. However... I recently discussed the issue with my consultant (who is highly respected in the world of BC) and he strongly recommended I stay on for the full 5 years. He did talk about a compromise of 3, pointing out that there were two "spikes of recurrence" - one around 3 years and one around 5. I am surprised at Tamox-in-Toronoto's mention of 10 years as my understanding is the potential side effects become more of an issue after 5 years, offsetting the benefits.
There's no doubting it's a tricky one and I think Tamox-in-Toronto got it right when she said: "It's weighing being happy in life with the family you want to have vs. not being so happy but protecting your life. What to do?"
I'm still puzzling it out. Obviously I like what my oncologist tells me and was all prepared to ditch the tx and go for it, but I really trust my consultant and feel almost like I'd be letting him down if I went off it too soon after all that surgery and therapy.
Sorry I don't have the answer more than anyone else!
Dx 2010, 8mm, Grade 2, 2/10 nodes, ER+, HER2-
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Hi everyone, thanks for the reply Tessmerelda. It's good to know that we are not alone. I suppose we are all looking for some concrete answers but there doesn't seem to be any. Different consultants/onc all seem to have various opinions which leaves things very confusing.
Curlclaire, hopefully your next onc will be more understanding and give you the support you need. My own onc is quite neutral, basically the decision is mine. While he agrees that being pregnant doesn't cause reoccurance, it is the fact that I'll be coming off the taxoifen early that poses the risk. I have 2 dd and I find the decision to come off the tamoxifen v hard to make. Do I stop taking tamoxifen and run the risk of something happening to me, which in turn will affect my girls or do I follow my heart, stop the tamoxifen and try for a baby. Decisions, Decisions, Decisions!!!!
Tamox-in -Toronto, my onc also mentioned staying on the tamox for another five years. Apparently, it is suppose to provide extra benefits. He never mentioned the risks....will be asking him about that!
It's a tough call and there are no solid answers. I suppose at the end of the day after everything we all have been through, it's all about living and being happy and do what we have to do to make ourselves happy. There are sooooo many good luck stories on this page and gives hope to us all. I'm a great believer in the saying "what will be, will be" Take care everyone :-)
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indeed - its such a tough one My onc broached the subject at 3 years and I said no cos we were planning the wedding and I felt I had enough on my plate so we didn't discuss facts and figures. So when I went back to him at 4 years he struggled to come up with the facts and figures I looked for. Putting it simple I don't think that there is very much data out there at all for women 45 and under. My onc is around the same age as me (38) and has 2 small kids. he said to me that he thought himself that as regards the percentage increased risk of reoccurance by coming off tamox it would be something between 2-4%. Sounded low enough for me. I remember getting upset cos he is fairly brash and had said that if it did reoccur that the prognosis would not be good (which i wondered about cos I know lots of people who are fine 2nd time round). He said it it was him he would go for it and the percentages were low and that the risk of having a baby posed no risk....just the minimal risk of coming off tamox. I made a promise to myself when i got sick the last time that I would never, ever be back there again and I still know that I never will no matter what. Onwards and upwards ladies!!!
obviously everyone is different and has different family circumstances, etc but as I know i've said before gut instinct is important. Fingers firmly crossed for everyone!! xx0 -
I've read this thread twice so glad you started it. I find it very interesting because when I got married back in Nov.2008 we tried to start a family right away. I've had 7 miscarriages until I was told I had HER2 Neu positive breast cancer last August 2012.
At first I gave up the idea of trying to have a family with my husband who has no kids but me...I have a 20 years old son. I am only 38 (today is my birthday) and my husband is 43. I find it is a tough decision to make and everyone’s cases is different. I agree there isn’t much data out there but its scares me to have to decide life (to have a baby) or death (if my cancer reaccure sometime down the road). Then it’s the unknown that worries me the most…sighh…I can adopt but I am from Bermuda and in this small island I don’t think they will grant me permission for this option due to the risk I am sure they would say.
I get so frustrated and I try to be just happy with my only child but I so long to have more children. I feel I am cheating my husband for not providing a child of his own. I am sure I will make the right decision one day…sorry ladies I guess I just need to vent a little..I am so confused and scared of what I really want to do.
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Happy Birthday 35 smiling
hope you have an amazing day:)Hi all, I've been lingering here reading posts, as I'm about to start tamoxifen and asked my onc today when seeing him if I could not have it , have a baby then start on the tamoxifen, anyone else done or heard of this?? ...he is going to look into it for me.
This is not a light decision to make and we all have the same concern, just wished it was an easier choice to make with some stats out there. I know stats aren't everything and all of you that have gone ahead and gone with your heart and made decision to have babies..( and congrats to those that have their bundles of joy and good luck to those trying now)...you are all an inspiration.
16 years ago I had Hodgkin's disease, when I was 18, they told me that they would put me on a tablet to shut down my ovaries ( a little like zoladex, but was taken orally every day - like the pill) they said there is a 50/50 chance of this working to increase my chances of being able to have babies. Well, on 25th Dec 2009 I got the best christmas present EVER, my little baby boy....AND it was a 'one hit wonder'
so I know my son is a blessing......Now to make the decision, do I want to put my life at risk of reoccurance for my son to have a sibling or be blessed with our son we have now and give it everything for him as he needs a mummy...ohhhhh decisions we all have to face for different reasons in our life...makes it so tough 
especially before DX hubby and I were talking about starting to try for another baby to 'complete' our family ( I know I am complete with my son, but the desire to be a mummy again is over whelming)Thanks for reading and listening......
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Traii ~ Thank you so much for my birthday shout out. I am so right with you with the concern of having another child. I wish it could be an easier decision to make.
As for me my son just turned 20yrs old on Jan.11 last month and here I am at 38 thinking of a second child. We still don’t know if the cancer caused all my previous miscarriages or not because I had four of them between 2010-2011 and two in 2012 then I was diagnosed in August of 2012 of the stage IV HER2 Neu+ breast cancer which spread to my spine. I am coming to an end with my 12 rounds of Taxol and Herception. Then I have another surgery to remove the cancer from my breast then I go on to have radiation. Once all that is completed I want to try to conceive if I can work around my nerves and just take the risk. If I am successful then I would go ahead and do the tamoxifen for the five years. I still have more time to make this decision so we will see what happens.
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Traii - i also asked if i could have a baby first, then do the tamox. i was told it is most effective if u take it in the early stages post-diagnosis. they said the first couple of years are the most important to just try and crush it. but i would b very interested to hear what your onc comes back with
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Hi all, i would just like to share my latest news after my onc apptment today. im happy to say, my onc is totally fine with me coming off tamox after 2 yrs!!! hooray!!! he still says that there's little point in going back on afterwards but said that i could if it gives me peace of mind, which i will do, coz i'd rather finish eventually than not at all. i know all this time its been my decision but it feels so good to get the green light. and he just seemed so relaxed about it, which makes me feel relaxed. gut instinct is telling me this is the right choice for me. so in 15 months i get to come off tamox - but who's counting?
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Hi all. I was just re-reading some of these posts and wanted to say again how wonderful it is to know there are other women in my same situation. This group seems full of level-headed, nice women. My cycles returned after 6 months off tamoxifen. Four months trying so far and no luck. I'm so very fortunate to have an oncofertility clinic 20 minutes from my house!! The fertility specialist there just started a workup with me last week. Waiting for my AMH test to come back to get an idea of my ovarian reserve. Anybody have an idea how common it is to have a fairly regular cycle but not ovulate?
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Hello ladies,
Sorry I haven't been on here for a while. Good to see the newer girls. Hello! Although obviously sorry you're in this position too.
Over the last couple of months quite a few girls who I met having treatment at the same time as me have started getting recurrances and developing secondaries and it's scared me and really put me off the whole coming off Tamoxifen. But at the same most of my non-BC friends have popped babies out over the past 6 months or made announcements that they're pregnant and it hurts so much. That's all I want. Not to have to deal with all of this rubbish! But that's the hand I've been dealt and I will deal with it. Over the summer I'm going to see a few different oncs to see what they say about stopping Tamox after 2 years given my pathology. Wouldn't be upset if the benefit is substantial to wait 3 years (would then be 36). I'm hoping talking to trusted professionals will help with the wrestling of my dreams and fears.
Good luch with making the right decisions for YOU.
xx
I hope0 -
Hey all - sorry haven't been on in a while - taking it handy and consentrating on baby making!!!
no news as of yet. Hoping it will happen soon as the next option is clomid and I really don't think that it is for me - don't fancy any more risks. It is hard alrigh when my friends are having babies all over the place. My best friend who has a year and a half year old and is adiment that she does not want anymore accidently got pregnant 7 months before her wedding and miscarried before she even knew she was preg. She is beyond devastated and i'm really finding it hard to support her being in the situatin that I am in. Anyways - 35 smiling - you are an amazing person having gone through everything that yu have gone through. I hear ya though - i think I could just about cope for myself but I so want my husband to be a dad. It is never an easy decision either way - best of luck completing your treatment and op. As you say you need to get through that first before you need to make a decision - belated happy birthday also!!
Angelbaby1 - congrats on the good news - its nice to have a plan in place and puts your mind at ease.
slg6 - i'm trying for 6 mths and i'm told be all sorts of doctors that it's very early days and not to panic. Going back to fertility specialist in april but he really didn't want to see me til aug. Just felt I couldn't wait that long but now I might push it out again to avoid going on clomid.
Skibunny - I think you hit the nail on the head there. Every ones decision is different cos everyone has different circumstances, probably not any two of us have the same diagnosis, etc. So just because some people take different risks, etc may not mean that everyone else can.
Arale - how goes it with the periods??
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Hi Tessmerelda. I agree that we haven't been trying all that long but itsn't it so hard to be patient? I hate to think that I took the risk of coming off tamoxifen (although I feel it is a small risk) only to not be able to concieve. I had cytoxan so damage to my fertility is a real possibility. Come what may though. I am truly blessed with with 2 year old daughter and while we would prefer to have a sibling for her, I feel so very lucky to have just her.
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Hi girls,
How are you doing?
Sheko - I understand your doubts about coming off tamoxifen or not. I´ve been almost the full five years on tamoxifen+zoladex. In the last appointment with my onc, he agreed that it´s the time to try to conceive. I think that 4 years on tamoxifen is quite good. I think that now we have two challenges in front of us: 1) checking what has happened with our fertility and trying to conceive, and 2) overcome our fears, which I think that it´s gonna take a while.
Cloudberry, Angelbaby - It´s good to know that your drs. are positive about trying a pregnancy in a year more or less. You´ll see how this year goes by really fast!
TessmeraldaC - 2 to 4% sounds low to me too!!! I hope you can enjoy the baby-making!! After waiting a lot for my period to return, at least I have had it two times, so this month we´re gonna try for the first time (we´re trying actually
). I´m trying not to think too much about what´s gonna happen in the next months. I´m trying to keep positive but sometimes I feel really nervous about this new mountain we have to climb. slg76 - I´ve looking also for scientific literature which indicates that pregnancy is ok after breast cancer. I´ve found some interesting references, but I had some fear of maybe be searching only what I wanted to read (something like an unconscious bias), so it´s to good to know that your search support our wishes of wanting children.
Treadsoftly - How are you doing? Are you already trying to conceive?
Mandy85 - When do you have your next appointment with your onc? Are you gonna ask him about coming off tamoxifen?
Curlclaire - your post almost make me cry!! It´s good to know that sharing our experiences is good for everybody. You´ll see how time goes by and soon you´ll be trying to conceive again.
Tamox-in-Toronto, 35_smiling, Trail - Have you talked to your onc/dr? What are they suggesting you? 5 years? 2 years?
Skibunny - I truly believe that overcoming our fears is the most difficult part of all of this. I send you lots of positives energies!!
Sorry if I´m missing someone. Lots of hugs to everybody
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Arale they suggest for me to wait at least two years but by then i will be 40yrs old!
to me that is too old to start for baby #2. I think I will go for the adoption plan...but its still early to decide. Good luck to you!
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Arale, they suggest 2 years on Tamox before i start trying for a baby. I am still on the Zoladex shots, last one tomorrow so will see if and when periods come back!
Wishing you all a Happy Easter xox hope the 'Easter Bunny' visits you all xx
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Hi ladies,
Hope everyone is doing well & in good form!
I came off tamoxifen in January after being on it for 3 years & waited 2 months for it to wash out of my system. So really only started actively trying for past month (and having fun in the process!!). I really hope we have results. Because my tumour was ER & PR positive, any hormonal help is out of the question. I had regular periods all throughout tamoxifen & am 32 so hoping all is in working order!!
It's great to log on here & share with ladies who understand. I hope you are all doing well!
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Hey Ladies,was back with the fertility specialist this week. 7 months trying but only 5 cycles as my cycles are long. He has done an AMH test to see if i'm ovulating right. Getting nervous now cos I don't know what options are open to me if I don't concieve naturally. Meeting my onc in a months time so will find out my limitations then...depending on results it's either clomid or IVF and I don't know if onc will want me to have either. Feeling very down at the mo even though i'm trying to keep myself positive...but it's so hard and everywhere I look girls are havin babies. Just feel like I deserve the break. sorry for the rant - just a bad day
Hope everyone is doin well xx T0 -
Tess are you doing acupuncture? I am doing it weekly right now and my periods are so much more regular. I am hopeful this will get me back on track. So many other women had success with it and now I am. Also it helps with anxiety and seasonal allergies. Sometimes the small interventions get the job done.
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yeah soccergirl - being doing accu since last september each week - find it nice and relaxing and it has meant that I don't miss periods but still not getting shorter
Did it take long for accu to work for you?0 -
How long are your periods and is that a variable that affects conception? I started doing acupuncture this winter and it is regulating my period. I feel so much relief that it is working. We haven't started trying to get pregnant. I think this summer we will go for it.
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my periods were all over the place as a teenager and in my twenties. Believe it or not it wasn't until after they returned post chemo that they were in any sort of normal routine....just a bit longer....but I have had a few normal ones in between!! I am keeping the sunny side out and hoping that the AMH result is normal. have to wait another week but in the mean time we keep trying!! I just know I will get pregnant. Belief is a very powerful thing and I truly believe that it is for me x Great that the accu is working for you - you must be excited at the prospect of starting to try!! you started on folic acid? I'd recommend royal jelly, vit c and and a really good multi vit and mineral too.
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I'm 3 years post BC DX. I am 36 and going to do ivf in a week. I'm brca 2+ so Ifeel this might be the only way to have a
Child. Question... for those of you who had a child after BC did anyone have a reoccurrence? I was thinking after ivf I would finish my tamoxifin then try and have have a child naturally or at least w my frozen embryos. Any advice?0 -
Hi all. Still working away at babymaking. I did an ovarian ultrasound last week and all looks normal including follicle counts. Great news! I'm waiting for my follow up apt. to get AMH and other blood work results.
Traii and Angelbaby. I was also told that I needed to get on tamoxifen right away. But, my doctor was fine with one year of tamoxifen and then a break for a baby or even two if we want. She is insistant that I then finish the 5 years of tamoxifen treatment. We think my cancer had not spread to lymph nodes and I had clear margins during surgery. It is so hard to compare case to case and doctor to doctor. I consulted three oncologists plus my father who is an oncologist. You guessed it...I got 4 different answers!
My doctor says that conception may be harder but that there is no additional risk for the baby or pregnancy once I have concieved. Is that consistent with what you guys have been told? Is anyone else still worried about the health of the baby more so than if cancer hadn't been in the picture?
Fingers crossed for good blood work results!
Treadsoftly. My oncofertility doctor actually thinks that hormonal help for pregnancy is not out of the question even though my tumor was also ER/PR+. She says that the amount of hormone they use to promote ovulation is actually less than what your body makes every month anyway. Hopefully we will both get our little bundle naturally and not have to worry about it.
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sig76: thats very interesting about what your onco-fertility doctor says about hormonal help, if things dont happen naturally I will be having another chat with my oncologist & getting a referral to a see fertility specialist. Even though, I am just trying to relax & let things happen naturally. Easier said than done though!
TessmereldaC: how are things going for you? Im on folic acid but what is the royal jelly for?
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