Coming off tamoxifen early to have a baby
Hi everyone
I'm a little lonely over here in the UK and was hoping to find some kindred spirits. I'm now almost two years on from my diagnosis. I was diagnosed with Her 2+, weakly ER+ breast cancer in April 09 at the age of 37 about three months before we were due to be married and a few weeks after completion of our first round of IVF (sadly unsuccessful) for which I'd given up my rather stressful job to give it the best chance. The last few years have been a whirlwind of chemo, surgery (I had a mastectomy and reconstruction and lymph node clearance), radiotherapy followed by herceptin, taking me to mid 2010. For a full five months the Doctors thought I had secondary cancer but thankfully later results showed that they had been mistaken. I'm now on tamoxifen (just over a year in with four more to go) and zoladex and am contemplating coming off the tamoxifen early to have a baby.
I'm waiting for a test on my ovarian reserve which will show whether I am producing sufficient follicles to make embryo freezing viable. Once that comes through (and I suspect it will show that there is no point going down the embryo freezing route) I will have to make the decision whether to come off the tamoxifen this year whilst I'm still 39 and therefore eligible for free treatment (I know, we are SO lucky in the UK) and have presumably a higher fertility rate. Or wait a year or two when my fertility will be at rock bottom. I've never felt so old!!!
This is a very lonely decision to have to make, with no statistics and limited evidence to spell out the risks. My oncologist is very happy with me going down the IVF route, but the odds really do seem to be stacked against it being successful. Adoption also looks challenging for us because of my medical history and my partners (he has a spinal injury and is paralysed from the chest down).
I went for a consult with the fertility clinic over the weekend and was shocked to hear that one of the UK's most famous fertility clinics had never treated anyone in my situation. It seems that very few women of child bearing age, who want children but are at that crucial age when they can't wait five years get the sort of aggressive cancer that I had. Most people have either had their family or have had time to freeze their embryos. So I'm feeling a little alone. Whilst I wouldn't wish this situation on anyone, it would be great to hear from someone else who is struggling with the decision whether or not to come off tamoxifen after a year and a half to try for pregnancy.
Take care all
Lisa xComments
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Thanks so much for your post Hadley, I really appreciate your support.
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My physician said that I would need to stay on Tamoxifen for 2 years if I wanted to stop. Why 2 years? I really have no idea if that is a magic # of if you would be ok at 1 or 1/2 years.
I am in the same boat over here having just turned 36. Adoption will probably not be an option, as Texas law is really strict and health issues are usually a guaranteed rejection.
Good luck with your decision, and keep us posted!
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Hi J, Thanks so much for your reply. I'm so sorry to hear that adoption is not an option for you and that you're in the same boat. At least for us health doesn't rule adoption out entirely - it's more that my husband and I both have issues that is the problem. That said, the UK adoption system is a nightmare with only 76 babies adopted last year.
The two year rule does seem somewhat aribitrary doesn't it? I just find it so frustrating that there is no data to help us out with making a decision! Are you planning to stop at the two year mark to have a baby? Do keep in touch. xx
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I'm also struggling with this decision right now. Next month will mark one year on Tamoxifen, 18 months post-diagnosis. I'm 38 so the clock is definitely ticking (although I do have one child, we were getting ready to try for a second when I was diagnosed). All the doctors I've talked to about this are OK with me taking a break - although they disagree on when would be the best point (I've heard everything from start right now to wait 2 years). My cancer was at an earlier stage, so I suppose that's in my favor (although I worry that since I didn't have chemo it might be more likely to come back). At this point, I'm leaning toward waiting until after my next scheduled mammogram, which will give me 2 more months on the Tamoxifen. Good luck with your decision.
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Hi Lisa
These issues are so difficult. May I ask, are you still on Zoladex too? I assume you will need to come off that as well if you are going to conceive.
My story started a lot like yours; diagnosed in Jan 2009 at 36, had chemo together with Zoladex for six months, then radiation. My period came back 6 months after the last Zoladex shot (that was just a year ago now). I had surgery to preserve ovarian tissue before chemo started; it is still in the freezer. Since my period came back I have had one pregnancy which miscarried at 3 months, and am keeping my fingers crossed in relation to a second. So it seems things are kinda working again.
But our stories are different too; I'm not a girl who came off Tamoxifen early, because I decided after a LOT of soul searching not to take it at all. I felt there WERE statistics which showed that after chemo, Tamoxifen's additional protection was quite limited and, for me, not enough to justify a 5 year deferral of child bearing. I also saw recent evidence that in some ways pregnancy can be protective rather than a new risk. So after long debate with my oncologist I refused the Tamoxifen and decided that I would live with a slightly higher risk of recurrence than I would have had if on Tamoxifen (bearing in mind that Tamoxifen doesn't always work anyway). He disagreed with me but he accepted my decision. That was 15 months ago, and so far, so good.
The available evidence suggests that women who conceive after cancer don't have higher recurrence rates. The numbers of such women are very few, which makes statistics of limited value. And yes, there is no data on 5 years vs 2 years on Tamoxifen. You have to decide which risk you can live with; a perhaps higher risk of recurrence, vs a MUCH higher risk that you won't be a parent. And no one, in the end, can make that choice but you.
The cancer you had sounds larger and more aggressive than the one I had. It may be for you the protection offered by Tamoxifen is more substantial. But keeping our bodies safe from cancer is only part of the issue, isn't it? We want to be healthy because there are things we want to do with our lives, like have children. Being healthy is not merely an end in itself, it is a means to an end.I decided that the chance of being a mother was too important to give up, and so I decided to take the increased recurrence risk.
So, for what it is worth, knowing the very little about you that your opening post reveals, if I were you I would stop the Tamoxifen and go hell for leather at having that baby I so want.
But that's me; it may not be you. These things are hideously hard. You're in my thoughts as you make your decision.
Rachel
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I'm glad I found this thread. I just started Tamoxifen and I'm feeling kind of lost. 2010 was a VERY bad year for me. I miscarried in January and in July found the lump - the rest is history, as they say
I just finished the TC part of TCH chemo and have herceptin for another 7 months. I'm 36 now and my husband and I would very much like to have another baby but with the 5 years on tamoxifen it doesn't seem possible. Can't even think about it really until the herceptin ends (Sep2011 and I'll be 37 then).
My Onc told me we should just forget about having another baby because we have two beautiful daughters. A year and a half ago I would've agreed with him but after the miscarriage I've really felt like we are missing out by not completing our family. Its probably more that I don't like having the choice of having a third child taken away from me but I am frustrated at the lack of information there is about this.
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i am not on tamoxifen so diff scenario really, i had done ivf at 34 after trying unsucessfully for two years, i discovered that i had occult ovarian failure and auto immune bloods showed high levels of antibodies so because of regular period (like clockwork) and age they were giving me a 2nd go at own ivf and lots of euros as completely private here for fertility treatment, i am in ireland, anyway i was not happy with breast lumps and decided to get them sorted once and for all and not being fobbed off by gp and breast clinic with small dense lumpy breasts. i was on the pre adoption meeting list for foregin adoption at this time but did not work out because of cancer have to wait for five yrs clear to apply or so social worker told me at the meeting.
anyway i am hoping to go ahead this year as had transvaginal ultrasound, hysterscopy and dnc in november that discovered my ovaries are back up and running after chemo pause, perfect size and releasing hormones, whether they will produce an egg is another matter entirely, everyone would have thought i would be in permanent menopause after chemo but thankfully not. i have to get a letter off my oncologist to say it is o.k.to proceed and we have agreed on 2.5 years out from diganosis. the lyster clinic in london is getting great reviews here in ireland for high fsh'ers and unfavourable amh results but i do not know if they take nhs patients as our health board do not cover ivf.
there is a great uk website on fertility issues and they have lots of different threads about options and people that have gone through premature ovarian failure as a result of cancer treatment and are going down the donor egg route or those with multiple ivf failures and are still strong enough to carry on with the rollercoaster of emotions that is infertility. this may not be an option for you but might be something to think about.
best of luck and take care.
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Hi everyone
Thanks so much for your messages and support - what a lovely thing to come back to after a week away!
Tea - thanks for sharing your experience. It's interesting how varied the advice is on this. Those two months will just fly by, I wish you lots and lots of luck.
Rachel - I am on Zoladex and it's playing havoc with my moods. For the two weeks after I take it I'm really down and tearful. Horrible stuff! Apparently Zoladex is used to down regulate your cycle in IVF so I would stay on it until I go through egg collection during IVF. I'd then have to come off it throughout pregnancy. I'm sorry to hear about your miscarriage and will keep everything crossed for you that this second chance works out - how exciting! You have a very valid point about health being a means to an end rather than an end in itself. Tamoxifen has marginal benefits for me as well (my cancer is weakly hormone sensitive) and I, too, have heard that pregnancy has a protective effect against breast cancer. I am leaning towards just going for it and coming off the tamoxifen (with the agreement of my oncologist), but I think I'll only be able to take that decision after my test results.
Who knew - I'm sorry to hear that you're in the same boat and it is completely understandable that you should want to complete your family as planned. One of the worst things about cancer is that it takes away all kinds of decisions from you. If you feel very strongly about this, you have the right to raise it wtih your oncologist again and ask for a very clear picture of the pros and cons of a third pregnancy.
Hope 2 - thanks so much for your words of support and for sharing your story and also for the recommendation on the clinic. Good luck with your next round of treatment, fingers crossed it will be successful.
Hadley - thanks again for your words of encouragement. I'll let you know when I know more.
Take care all
lisa xx
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Lisa - thank you for your having everything crossed; I have had the 12 week scan and things look good so far! Do let us know when you have more information; thinking of you.
R x
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Hi Rachel,
What wonderful news! Still no news on my side, they've asked me to call back next week. I had one of my oldest and dearest friends offer to be a surrogate for us if we decided to go that route. I don't think we will because it's just so complicated, but what a wonderful, generous thing to offer. Some of my friends are just wonderful.
Good luck with the next few weeks
Lisa x
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My onc said that I have to be on it for a year before we can decide to have babies (and then be off it for at least 2 months before we can start officially trying).My period just came back after 5 months so I am hoping everything is turning back on!
Good luck with everything!
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SKD: your periods came back after 5 months, you're very lucky. Since I finished chemo (Nov.2009) I've only had 4 periods.
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I have been on tamoxifen for a little over 2 years. I was diagnosed in Sept 08 with Stage 1. Had lumpectomy and radiation. I am getting married in October and was thinking of stopping at my 3 year mark next January. I will be almost 37 when I get married. I want to start a family and it seems like the longer I've been on it, the side effects are getting worse. Some months I average a period every 45-50 days. I see my doctor in a few months so I hope she is on board with me stopping.
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Hi everyone,
Well, I finally got the results of my test (AMH it's called). It's come out as very low which means I can give IVF a go, but my chances of it working are not that high. We've decided to give it a go (if my oncologist says we can). If it doesn't work then at least we will have tried once and there's always egg donation as an option. For all of you debating whether to come off the drugs or not, I would suggest getting an AMH test done - it gives you an idea of how long you can afford to wait before trying.
Akeefe - congratulations on your wedding. I hope you have a wonderful day. And good luck with your doctor, hope she gives you the green light
Thanks everyone else for all the info
Take care xx
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Hi Lisa
That is great news that you can give IVF a go. Remember, it is your choice not your oncologist's; though I know you will take his/her advice into account. If I had taken my oncologist's advice I would be in my second year of Tamox, with 3 to go before I could even contemplate pregnancy. Instead I am (touch wood!) 14 weeks pregnant, and I feel completely comfortable with that decision as I am sure you will be with yours, whatever it ends up being. Thinking of you.
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Thanks Rachel, I may well follow your example! x
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To all the ladies, so sorry you have to be here in the first place. Younger women with BC are a minority...... esp. being in what is supposed to be our prime years. When you see a fertility specialist, they often recommend storing eggs, embryos (if you are partnered) as early as possible. There are less eggs being produced from mid-thirties that will fertilise and successfully attach to the uterine wall.
Having said that, there are some women in their mid-forties who thought they were menopausal and became pregnant whilst coming off treatment.....! There are women who have never had BC and still can't conceive either. We are all different and the main thing is to relax, keep well and let it happen.
I completed 2 yrs of tamoxifen in Aug 10 and oral contraceptive pill in Dec 10. My body is still adjusting (ocassional missed period) and no not pregnant either - YET. I just turned 38 (diagnosed at 34/35).... even though my periods have been regular all throughout chemo and tamoxifen, it has taken nearly 6 months for my body to readjust including shedding weight. In the meantime, I recommend you have all the usual pap/gyno tests. Also, take folate for planned pregnancy, of course, always check with your Dr.
Research shows that recurrence is most likely to occur within the 5 year period and this explains why some ongologists can be quite discouraging. However, more recent studies are showing that SERMs like tamoxifen are only effective in some women and not others.
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Hi all,
This week is agony. I'm waiting to see my oncologist on Thursday. I was hoping not to have news of pregnancies this week - just this week, not too much to ask is it??!. It's only tuesday and already one of our friends has announced a pregnancy and the random work bloke that I'm meeting for lunch today is going on about his wife (who he's calling 'Momma'!) who is due to give birth imminently. Give me a break!!!
Love to all
xx
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Lisa
It is Thursday here in Australia and I am thinking of you; hope the news is good news.
Love
R
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Hi Rachel (and everyone else too!)
I'm just back from my oncologist. Good news I think! He has said that he is happy for me to come of tamoxifen and zoladex to try and have a child through IVF. It is not without risk - he quoted 1-2 in 50 people could get a recurrance from coming off tamoxifen for a year but because my cancer is (was?!) weakly hormone sensitive the risk should be lower for me. So I have the greenlight from the medical guys. Now we just have to decide whether to go ahead given that there is a bit of a risk and that we have to use donor sperm anyway. Tonights dinner conversation is going to be interesting!!
Thanks everyone for your support. Hope the pregnancy is continuing to go well Rachel.
Lots of love
xx
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So, we've made our decision. Suprisingly quickly as it turns out, helped by the fact that my cancer is weakly hormone sensitive - none of the stats apply that well to my case. We're going to have one round of IVF using my own eggs (if I get any). If we didn't, I would always be thinking that I could have had a baby if only I'd been willing to take a risk. It's so exciting! And scary. I'm also thrilled that i can come off tamoxifen and zoladex for a while, I HATE being menopausal. Feeling good about the whole thing. I'm planning to ramp up my diet and healthy eating plan. I've no idea what the future will bring, but it is so, so wonderful to be in the position to be able to try for a baby when less than two years ago i thought I was going to die. Love and hugs to everyone xx
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Oh Lisa, that is such fantastic news. I am so happy for you that you've had the opportunity to make this decision. Yes, coming out of menopause will be wonderful in itself: estrogen is NOT the enemy, especially when the cancer you had was not really estrogen sensitive.
May I make one suggestion based on my own experience pre chemo? If you are only going to do one cycle, make sure they give you a decent dose of the relevant hormones rather thana lower dose as they did me (because they didn't want to risk cancer growth). If I had known then what I know now I would have said hey- the risk posed by one round of stimulation is pretty small, ramp up that dose! But I didn't and so the egg harvesting I did pre-chemo was not much of a success. As it turned out it hasn't mattered for me but it would have been better to get a larger crop of good eggs from the cycle. You're only doing one round, so make sure they make it a good one for you.
And yes, so wonderful to be in this position! For myself, two years ago I was about to start 6 months of chemo. Now I am 17 weeks pregnant and keeping everything crossed. Yes, I do worry sometimes about recurrence, but I would worry anyway. And no kind of fear about recurrence is so great that the sound of my baby's heartbeat (which I heard yesterday) doesn't chase it right away. I will be hoping and praying so hard for you that you hear that sound soon too.
Love
Rachel
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Hi Rachel,
Thanks so much for your words of encouragement. It's really inspirational to hear of someone who was in my position not so long ago who is now pregnant and clearly over the moon! I suspect that I will worry about my decision for a while, but I guess that's natural. You're right. The risk of recurrance is there whether or not you come of the drugs and for me the drugs have a relatively small beneficial affect. I'll bear in mind your advice about the fertility drugs - they've already decided to use a high dose for me but with a another drug (letrozole) and FSH to maximise egg production and minimise risk. Did you conceive naturally this time or through IVF?
You must be so excited to hear your baby's heart beat. Particularly given everything that you have already been through. How wonderful! Do keep in touch.
Love Lisax
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Hi Lisa
Have been wondering how you are doing. I had my 20 week scan today: the baby is looking well and exactly on schedule. It's a little boy. Yes, we conceived naturally: I'm so lucky.
Keep us informed how things go for you!
Love
R
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Hi Rachel,
i'm so glad to hear that you and your baby is doing well. A little boy - how exciting! It must be great to have a different kind of scan all together to the ones that you have for cancer! Speaking of which, I've just had a load of scan results that show no cancer recurrance. The words 'completely normal' are wonderful ones to hear! So now I just have to wait for two months to flush the tamoxifen out of my system. I'm still having hot flushes and still no sign of my period, but fingers crossed my good old hormones will kick in again soon. In the meantime, i'm on a health drive and started acupuncture yesterday. People say it helps women on IVF and who am I to disagree with 5000 years of history?! Hope everything continues to go well. Love Lisa x
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Hi Hadley
My reproductive medicine specialist says I should be off tamoxifen for 10-12 weeks before trying IVF. I've been off it for a month and am still flushing like a lighthouse!
all the best
Lisa x
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Hi ladies!
Im 30, was diagnosed in Sept 2009. Had TC x 4, then lumpectomy, rads and currently on tamoxifen - just over 1 year gone, 4 to go!! Very infrequent periods but not that much hot flushes at all.
Getting married next March and would love to start a family soon after that which would mean coming off tamoxifen for a while..... Onc is happy for me to do this but then I wonder should I just finish the 5 years of tamoxifen, at which stage I will be 34 and try to get pregnant then?? Oh the decisions!! (Assuming I stay healthy and cancer-free, of course......)
Rachel, congrats on your great news, you must be so excited!! Lisa, wishing you the best of luck in IVF!
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Treadsoftly,
Have you researched any other complementary therapies that you might be able to do while you are off the Tamoxifen? I have heard that pregnancy is protective and that the first two years are most important. You could stay on Tamox for two years, then go off and do some other complementary stuff, have an adorable baby, and go back on Tamox.
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Hi treadsoftly, I think it's quite common for young women to take time off tamoxifen after two years to try for a baby. The level of risk will depend on the level of hormone sensitivity of your cancer. I had a joint consultation with my oncologist and a reproductive medicine specialist which was really useful. Maybe that's something that you can do to figure out your next steps? Good luck with it all Lisa x
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Hey Lisa - wanted to check in to see whether you have started your treatment yet. Fingers crossed for you that when you do it goes exactly as you would want.
I'm at 31 weeks now and starting to feel like this might really happen. I send my love to all who are trying or hoping to conceive.
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