Coming off tamoxifen early to have a baby
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Hi All,
I stopped tamoxifen back in May and have been trying to get pregnant for about 6 months now. It's getting more and more depressing each month when it doesn't happen. I did iui last cycle, didn't take. We can't do IVF, for many reasons.
My husband and I are 35, and while our numbers aren't fantastic, they aren't bad either. Dr said she has no reason to believe this couldn't happen.
Anyway. I'm getting anxious about being off tamoxifen at this point. Tired of the emotional roller coaster every month, and starting to try to imagine life childless.
Anyone else experience this? How long would you feel comfortable trying before throwing in the towel? My oncologist doesn't have a whole lot of advice on that.
I'm surprised at how emotionally grueling this has been.
Thanks,
Sarah
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Hello ladies. I was originally dx'd in 2017 at 43 w/IDC. I desperately wanted a 3rd child but having one naturally is no longer in the cards for me. Perhaps one day I will be fortunate enough to adopt and I have 2 beautiful biological children. Six months prior to my own dx, my younger sister was dx w/ Stage 3 triple positive IDC at age 39. She had a baby in her mid-20's that was born at 23.5 weeks and only survived for 12 days. After that she had a string of miscarriages- 5 total. She underwent neoadjuvant chemo, a DMX and was on Tamoxifen. She decided to stop taking Tamoxifen as she was upset about the amount of weight she had gained. She did not tell anyone she had stopped taking her medication, however. Lo and behold, she got pregnant naturally this summer at 42! She is due to give birth to a baby boy at the end of January. This is truly a miracle baby! Everything looks great and he is apparently quite large with a head full of hair. Sometimes miracles happen. Don't give up hope. She was convinced after everything her body had been through that she would not be able to get pregnant. Stay positive and don't give up on your dreams of having a baby. My sister is living proof of that!
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Dear nem, my daughter's oncologist told her she may interrupt Tamoxifen for a period of 2 years.
A propos, a friend of mine and his wife had been trying hard for having kids many years back . Eventually, they gave up and started arranging their life without. Not much later, his wife conceived...
Best wishes for you, G
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Hi Sarah,
I'm so sorry you're going through this. Breast Cancer at a young age is bad enough to deal with, throw in infertility problems caused by it, it just doesn't seem fair
Have you tried joining the group Facebook group, Babies After Breast Cancer? There are so many stories like yours (and mine) and many people have been in your shoes, trying for months to a year, and then were given their miracle baby. I know it's hard, but hormone therapy and stress does a number on your system. Best of luck to you and keep the hope!! xx
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Firecracker- how long was your sister on Tamox before she got off? Has she gotten bak on? What a beautiful story!
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hi, sweet nem126! Just here to say: what you are going through is grueling. But: don’t throw in the towel. 6 months, even though every month is like a punch in the gut, is nothing in the world of trying to get pregnant. A lot of fertility docs around me won’t even start with a patient unless they’ve been trying naturally for at least a year (because even under totally normal - eg no cancer, no tamoxifen - conditions, 6-12 months to get pregnant is usual.) So, this is all to say - you’re still in “could be perfectly normal” territory. Nothing is promised, obviously, and that doesn’t mean it won’t still hurt every month. But you’re not anywhere near throw in the towel territory! Wishing you all the luck in the world.
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Hi @nem126 - I haven't been on any of these forums since the dark days of treatment but went on today and searched threads for coming off Tamoxifen to get pregnant and saw your post - I'm in the same boat!
I'm 34 and I came of Tamox last Feb. after the two-year mark. So for me, it's been almost a year "trying." Problem from the get-go was it took 4+ months to get my period back, so that was July, and it's been on a random disappearing act since. My fertility docs have no clue why I'm so irregular (um, maybe all that damn LUPRON, is what I want to say). We have an IVF cycle scheduled for whenever my period returns (we have 8 frozen embryos from before chemo). Who knows though, my period is "late" at the moment by six days (and heartbreakingly, NOT pregnant).
I had a pie-in-the-sky hope that I could get pregnant naturally and avoid all those stimulation/hormonal IVF meds, which scare me a LOT for some reason, but looks like IVF will be the way to go. It's scary, because to fit within that "try for two years then get back on Tamoxifen" window is closing in. I have to get pregnant by April. It's stressful, and I start to doubt even trying and stressing over this, and my husband and I are trying to prepare ourselves for a life without kids if it comes down to it. I get so sad because my husband acts like he's okay with it, and he is, but I can tell he wants to be a dad. But the whole process terrifies me. My mom had a recurrence that spread and she died in April (so, stress for me is def a factor...) All in all, I feel your pain and understand.
On a hopeful note, I know another surviver who - on her third round of IVF, right at the tail end of her "window" - got preggo with her last remaining embryo and she's due in May (she's 32).
Did your doc give you a "window" off the Tamoxifen, too?
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I just want to offer some hope to those who are trying to have a baby after cancer and specifically those that take a break from tamoxifen to do so. When I was diagnosed at 38, I was told there was no chance I would be able to carry my own baby. I would be 43 when I got off tamoxifen and my fertility would likely be affected by chemo etc. I was devastated but spend the next year focusing on my cancer fight. After I completed treatment, I couldn't stop thinking about having a baby. I scoured every website I could find trying to find data or anecdotal stories that would make me feel comfortable with taking a break from tamoxifen. I had switched oncologists by this point and thankfully she was supportive. I found a fertility specialist in San Diego that specializes in those with a history of cancer and made the decision to go off tamoxifen. It was terrifying but I was determined. I was 41, had a very low egg reserve and the odds were stacked against me. I did the two month "wash out" and surprisingly got pregnant right away. Unfortunately, I miscarried that baby. 7 long months later I got pregnant. My son is now 22 months and I just hit my five year mark. All in all, I was off tamoxifen for 2 years. I know everyone has a different story but I just want to say, if your oncologist isn't supportive of you taking a break from tamoxifen to get pregnant then find different doctor and never give up hope!
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Hi all,
I have been on Tamoxifen now for four years (this past December). I was diagnosed in the United States, but my husband and I have since moved to the United Kingdom. I will be 37 by the time I am able to conceive naturally, off of Tamoxifen, as I was told to take it for 5 years.
When I asked about fertility options in the U.S., my oncologist dismissed my questions stating we should just take care of this issue first. That's well and good - but starting Tamoxifen destroyed any chances of saving embryos or any other method, until the 5 years was up.
I just accepted this and moved on. Fast forward to 2019 when my husband and I spoke with my fertility doctor + onco here in the U.K. They advised they were comfortable with me taking a break from Tamoxifen after 4 years (which we just reached) in order to try for a baby. I am worried that I will be too old once we wait for the 5 years to be up. The idea is that I would come off - have our family - and go back on for a total of 7 years on Tamoxifen (not sure why 7... I know it's 5 or 10).
I am also scared - I dislike the 'what if's' and worry that if something bad happens down the road I will blame myself. Does anyone know of studies or trials that have been done for this sort of situation? I tried reading through most of the posts on this thread, but there's a lot. I know it's just a security blanket and not an end-all cure. It's just tough losing that security blanket!
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@wordsontour I know exactly how you feel. I hated the “what if’s” too and still do. Most of the data is anecdotal but there is a trial called the POSITIVE trial. It looks at people who have been on tamoxifen for at least 18 months and then take a break to get pregnant. I don’t know when the findings will be released but it’s worth looking into. For me, the leap of faith was worth it. I’m back on tamoxifen now after having a babyand so far so good.
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Popping in again - I am 22 weeks pregnant now with a little boy. Life
Gudrun (or anybody with experience) - do you have any tips for breastfeeding after breast cancer? Was there a physical reason you breastfed for six weeks and not longer? I had a single mastectomy and I'm hoping to breastfeed for six months minimum. From what I ready, it should be possible but I'm fine if it isn't. Most of the benefit is only in the first days/weeks. The little one will be fine regardless.
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@fd1 I was able to breastfeed from my one good breast for 6 months. My other breast went through radiation so it did not produce any milk. Thankfully, I had no major issues. I had to supplement a little in the first few weeks but I don't think that had anything to do with only having one breast. My doctor only wanted me to breastfeed for 3 months max so that I could go back on Tamoxifen but I just wasn't ready and either was baby. Although I would've liked to go longer I was happy with the 6 months. Good luck!!
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fd1, so glad for you and congrats.
My dd was able to breastfeed with her single and small breast that had sufficiently enough milk without any physical issues at all.
She stopped breastfeeding after about six weeks firstly because she was not convinced that with the high estrogen levels of her original tumor long breastfeeding may not be risky in the long run, and finally she just wanted to resume Tamoxifen soon after.
Best wishes, G
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Nickel103, just read your post from Dec 2019 and was wondering how your surrogate journey is going. I have a few frozen embryos and am starting to think about surrogacy. I am too afraid to play with the hormones and get pregnant myself as my BC was strongly hormone positive. Plus I'm 43 so I thought best route is surrogate. I know they're terribly expensive. Wanted to see if you can recommend any good surrogacy agencies to look into any the facebook pages you mentioned. Wishing you successful result and hope you're staying healthy!!
Hug,
Valerie (ButerflyLilly)
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Hi there,
I am so happy to find this group.
I am 36 and was diagnosed with stage 1 BC, i am currently taking Tamoxifen. I am married with no kids, but would love to have kids. I always wanted children but, my husband and I were not in a place to have them just yet, when we were ready to start a family i found a lump in my breast and from than on our plans were are on hold. I had Lumpectomy surgery back in January and after speaking to my surgeon and oncologists about freezing my eggs I want through the process of fertility treatments. My husband wanted to freeze embryos however, due to the current situation and the time limit (from when I had surgery to when I had to start radiation) and the stress of everything we were not able freeze any embryos. I did not have enough eggs and my husband had issues with sperm. I am happy that we went trough the process and at least we tried, however I am sad that we could not get any embryos for when i get off the medication and try for a baby.
my oncologist and GP doctor recommended i try to freeze my eggs again in a year, or try for a baby. not sure yet.
I am feeling kinda sad about everything at the moment, but all your stories and experiences are giving me hope for the future.
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Hi Blue311, and welcome to Breastcancer.org,
We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find great support within this incredible Community -- we're all here for you!
We are glad you could find some comfort and hope in the thread here, and we look forward to being able to support you through your fertility journey. Others will surely be by soon to share their thoughts and experiences, and welcome you.
In the meantime, you may be interested in checking out the main Breastcancer.org site's section on Fertility and Pregnancy Issues During and After Breast Cancer.
We hope this is helpful and we look forward to seeing you around the Community! Let us know if you need anything at all!
--The Mods
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Hi all! It’s been ages since I’ve been here, but I wanted to pop in to offer some hope. I gave birth to our beautiful little post-cancer miracle boy on March 15th. I did Tamoxifen for exactly 2 years, conceived naturally at age 35 and had a perfectly average pregnancy and delivery. I’ve been able to feed him with my remaining breast and supplement with formula. He’s so patient, smiley, and sweet and we could not be happier. Sending love and light to everyone
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@holasandy This is such wonderful news, thank you for sharing!
Best wishes from a fellow Canadian (living in the Bay Area, California).
All the best
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So happy for your miracles!! Such a great story
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hi SKD,
sorry to here about that hope all goes well,If you don’t mind mind me asking were you on Tamoxifen or any hormones therapy pills. If so for how long
I’m still debating on whether to start the drug or not.Regards
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Hi everyone!
This thread is incredibly and provides so much hope to young breast cancer survivors! Thank you all!
I’m writing on behalf of my wife who was diagnosed this year. We have a 3 year old and were hoping to try this year via IVF before the diagnosis hit.Our onc originally told us, two years tamoxifen, then break to try, then resume tamoxifen. However, after consultation at tumor bird, they agreed that we can start before tamoxifen. Has anyone done that? Gotten pregnant after diagnosis and surgery but before tamoxifen?
Her diagnosis is stage 1A, ER/PR+, <1cm, oncotype of 11.0 -
Hi Dres123,
I think your wife's doctors have more information about her conditions and treatment (e.g. chemo/radiation/surgery and how aggressive her cancer was). I would suggest to get a second opinion from MO who works with young patients. What I saw from my and my friends experience, doctors suggest to wait at least 2 years from the diagnosis. If your wife's tumor was tiny and slow growing, that's a different story.
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My son was born in June of this year, conceived naturally at the age of 38 after ACT DD in 2012 and five years of zoladex and tamoxifen. He is healthy and feisty and oh so adorable. I have been breastfeeding from one side with a small amount of formula as a supplement.
One thing I will mention to those TTC or pregnant, get a lymphedema sleeve and glove or monitor your arm very closely the last trimester and wear it during the delivery!! The third trimester swelling is obvious. Ironically, I had no problem with it. However, I blew up like a balloon after delivery all over my body and unfortunately developed pretty bad lymphedema in my arm and hand as a result.
Good luck to all who want little ones. May your dreams come true!!
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it seems from your tagline it was small and slow growing so if the tumor board at a good hospital okayed trying to conceive before tamoxifen, I would feel comfortable with that. However, I would be sure they understand it would be through ivf and also that the ivf team have worked with breast cancer patients. She will not be able to have the usual protocol as some of the drugs would be dangerous for fueling cancer.
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I would just say that I had incredibly fatiguing side effects from tamoxifen that did not go away.
Some women have no side effects at all! Many women have side effects at first that go away, sometimes with help, sometimes on their own.
If your wife isn't trying tamoxifen until after pregnancy, it means she will be dealing with learning her own side effect profile alongside a very young child, which might be a walk in the park, or might be incredibly challenging physically, mentally, and/or emotionally. In my experience (and I believe plenty of others here on the boards) many doctors do not take the challenges of hormonal treatment as seriously as they should!
This is not to discourage you, just to be aware that when she starts and for the first few months, it might not be easy, and whatever potential supports you can set up may be very useful.
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thank you for posting this. What a ray of hope:)
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Hi girls. I come back here from time to time to show hope. I hope you all do the same one day. I was diagnosed at 25 when my baby was 4 months old. She's 10 now and I went on to have twins about 5.5 years after diagnosis. I went back tamoxifen after I had them. Now that I'm 10 years out, I'm discontinuing tamoxifen all together. There's life to be had after...babies to be born.
You all continue to thrive and I hope all the girls that are struggling with whether or not to pause tamoxifen and try for a baby choose with faith and not fear. It was the best decision (although scary) that I ever made.
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thank you for sharing tatasister10!!!!
I’m almost two years post arimidex and hope to be able to take a break soon to try for a baby.
Xoxo
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I wanted to chime in with a positive story. I was misdiagnosed at 33 and officially diagnosed at 34, in 2013. During chemo, I had lupron treatments in the hope of preserving some fertility (my amh numbers were terrible even before chemo). I was on tamoxifen for 3 years and took a break in 2017.
Within a few months, I conceived my son naturally at 38 and gave birth to him shortly after turning 39. It was a few years of doubt and uncertainty that we would ever be able to have a child, let alone a child without my genetic mutation that leads to a nearly 100% risk of cancer. My toddler is healthy and doesn't have my genetic mutation. Sometimes, despite all this cancer crap, you can win the lottery.
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I am in a state of extreme anxiety and fear now so I came here to find some comforts. I was diagnosed with ER and PR positive stage1 breast cancer in 2018 when I was about to turn 30. Had the surgery, radiation therpary and was on Tamoxifen and Lupron for 2 years. I came off those hormone treatment drugs in April 2021 trying to get pregnant. It took me nearly 5 months to get my period back, and then a small surgery was done in my uterus to remove a fibriod in order to conceive (so another 2 months gone). So really started trying to conceive naturally in Nov 2021. So far, nothing happened
My hormones bloodtest came out fine, and so did my husband's sperm test result. I am just wondering if this 2-year tamoxifen break is absolutely strict? As time is ticking and I'm only getting more and more anxious... I want a baby so badly and so early and I think that's also an extra stress I'm putting on myself. Should I consider IVF? Does that increase more risk as higher dosage of hormones will be injected? I feel very lonely because I cannot talk this problem to any friend of mine in real life because they don't have any clue how it feels to be in this situation... 0
