Coming off tamoxifen early to have a baby
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I am so happy that I found this thread! I was diagnosed in September of last year at 32, and after 4 rounds of A/C, and 9 rounds of Taxol, and being on zoladex, I've been so afraid that I won't be able to conceive (and carry to term with no defects). But you ladies' success stories are really giving me serious hope! My boyfriend of 6 years and I are planning to get married in 2019, and we want to start trying about a year into our marriage, which is when I'll be coming up on my 2 years on tamoxifen. I'll be 35/36 then, and beyond ready for a baby. Congratulations clarrn!!! I'm so happy for you!
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I’m so glad I came across this thread. Lately I’ve been strongly considering taking a break from tamoxifen to try to get pregnant. I’ve been on tamoxifen since October 2016. My MO wants me to wait until I’m 5 years in to take that break, but I will be 38 then and I know FEC-D is hard on fertility. I’m just scared I’ll miss my window, and with that study that says pregnancy doesn’t appear to affect recurrence rates, I feel this might be the time to do it. I needed to see these success stories. Now just to work up the nerve to have that discussion with my MO again..
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Holasandy- I'm in a similar predicament and share your pain
I was dx at 34 just over 2.5 years ago now. I had stage 3/grade 3, 2 nodes positive and ER+. I've been on hormone therapy for 2 years and I'm now 37. I have no kids and my onco wants me to wait the full five years, as she says I am high risk. I will be 40/41 by then and I feel definitely at the end of my biological clock. I did have 2 embryos frozen, but I'm concerned about if they don't work (40% chance of a live birth) or my ovaries don't work again (I don't know post chemo) . The last thing I want is to risk my life, but I also don't want cancer to deprive me of children as well, so I am thinking about interrupting treatment..at maybe year 3/4.
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Any ladies not have their period return after chemo and tamoxifen? I was dx at 30 years old. I finished 16 rounds of chemo June 2017 and am now on tamoxifen. Blood tests at Fertility clinic show I have diminished ovarian reserve. Period hasn’t returned since I started chemo one year ago. Getting worried it won’t return...sigh.:-(
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Unfortunately yes, one of them being me. It broke my heart as I was so sure that I would be able to have a baby if I took the risk. But no, I am afraid
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My blood tests showed diminished ovarian reserve too. My fertility specialist said that I couldn't get pregnant and wasn't a candidate for IVF... but here I am, after a devastating missed miscarriage last year, now 37 weeks pregnant. I hope you all get your miracles ♡
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Hello ladies,
I’m in the exact same boat here. Its somewhat comforting to know there are others faced with this gut wrenching decision, but I’m so sorry to see so many young women faced with this choice. My heart goes out to you ladies.
I was diagnosed at 34 er/pr positive in early 2017. After undergoing chemo ac/taxol during my mastectomy I was diagnosed with a second breast cancer. Apparently half my tumor was er/Pr and the other half her2+. So, more treatment with herceptin and xeloda. Another fun surprise - my lymph nodes had always been negative on MRI scans and biopsy and then were found to be positive upon axillary dissection. Argh! I’m now doing monthly Lupron shots and Femara and am about ready to jump out a window with hot flashes and insomnia.
I have a now almost 3 year old, and had been planning to try for a second pregnancy back when she was about 18 months. But then I found my lump. My husband and I froze embryos prior to beginning chemo, but I’m so torn about coming off my hormone therapy early to have a second baby. My husband and my entire family are pretty against it, understandably. My medical oncologist seems to have come around to the idea somewhat, given some of the recent studies about there not being an increased risk of recurrence. His perspective though is that I’d still be losing the protection of a proven life saving therapy. He insists using a gestational surrogate is the safest thing to do.
I’ve considered using a gestational surrogate and have hadconsultations with several agencies. That said, the prospect still makes me nervous and the cost is astronomical. I feel like it’s a choice between risking my life or practically bankrupting my family. OR not having a baby, which feels like it’s not an option for me!
I also went so far as to seek a second opinion from a practitioner at Dana farber who is currently running the POSITIVE study. This is looking specifically at the long term outcomes for women who interrupt hormonal therapy to get pregnant. Unfortunately it seems the study will not be completed for several years still. Specific to my situation though the oncologist indicated their research doesn’t think having a baby will increase the risk, although interruption of endocrine therapy may not allow you as much risk reduction. So still not a great clear answer.
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Welcome Nickel, yeah it's a tricky one but as you say nice to find others. That's interesting about the positive trial, what stage were you? My onco said it wasn't a good idea for me to enroll due to my stage and node involvement, but I'm seriously hoping all oncologists don't necessarily think the same, otherwise it won't be so helpful for stage 3ers.
Clarrn- that's fantastic news! Congrats! Can I ask if you took hormone therapy and how long for? And how long did your onco say to wait before trying? Thanks
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Hi SophieMara,
I was a stage 2b at diagnosis, but they re-staged me to 3a after my mastectomy.
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Clarrn Congrats!!! Thanks for giving me hope!
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Sophiemara-
I was on tamoxifen for about a year and a half. Took 1 month off before starting to try to get pregnant for it to clear. The scary part of it for me was going off with no real guarantee that we would be successful, and then the risk was for nothing. Pregnancy provides a ~40% reduction in risk of recurrence which is better than tamoxifen, so I am not worried while I am pregnant.
I will go back on tamoxifen 6-8 weeks after delivery for another 8 years.
This is one wild roller coaster ladies!
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Hi ladies.
My recent blood work (cycle day 2) showed FSH 9 and estradiol was less than 5. Not good, huh?
I still have a regular period. I also use ovusense to detect ovulation. According to this monitor, I am ovulating.
Does the low estradiol number indicate my eggs are not viable, even though I may still be ovulating?
My fertility doctor has not provided any guidance on the results. A staff member called me with the numbers, but couldn't answer any questions. I'm currently looking for a new doctor....
I would really appreciate any input you may have? Thanks ladies. xxx
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Our little miracle arrived 5 weeks ago ♡
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Beautiful!! Congratulations clarrn!! Thank you so much for sharing and offering hope!
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That’s fantastic news, big congratulations Clarrn! Hope you and baby are going well and thanks for keeping us posted. There is definitely light at the end of the tunnel.
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Congratulations!!! I'm so happy for you and your family!!! God bless you each and every day!!!
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Omg,she’s beautiful! Congratulation!
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Grieving the restarting of tamoxifen and how good I felt off it. Only 8 more years of tamoxifen side effects! Urggh. I am so grateful that we have this drug to significantly help keep us cancer free but I wish there was something that didn't make me feel 80!
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Hi Sakura. Your story here is such an inspiration. Now i am seriously considering going off hormone pills to try for a baby via IVF and sperm donor as i am not married. I will be 39 next month, was diagnosed last september at 38. No kid. How are you doing now with everything? How is baby Arthur? Blessings to you and yours. Meg
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Hi everyone,
I had my appointment with the fertility dr several weeks ago. All of my levels are in the low range of normal. She was super supportive of me taking a tamoxifen break and suggested sooner rather than later. Had my appointment with my onco yesterday and she completely surprised me and was supportive. A year ago when we talked about it, she said we could talk about it after I’d been on tamoxifen for 5 years. So the plan is to stop in october, have a short washout (one or 2 menstrual cycles) and go from there!
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Hey HolaSandy,
Wow that's great news your fertility specialist and oncologist are so supportive!
Did your oncologist say what changed their mind? So you would have been on tamoxifen for 2.5 years? I have similar stats to you and I'm considering coming off arimidex in March as I would have been on it for 3 years. I'll be 38 then, so really dont want to wait much longer, although my oncologist wants me to wait the full 5 years.
Exciting news for you!
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Hi Sophiemara,
Thanks! Yes I’m excited! October 5 will be 2 years on tamoxifen for me, so I will stop around then. My onco did not say what changed her mind, but she did say that she got a letter from my fertility doctor. I’m not sure what exactly was in the letter, but the fertility doc was super supportive, so I’m guessing it was after reading that letter that she changed her mind. She did say that ideally I won’t be off of T for more than 1.5 years.
I would recommend, if it’s a possibility for you, going to see a fertility specialist and getting them to check your potential ability to conceive. From there you can have a discussion with your onco about your results, and maybe it would make more sense for you to try sooner than the 5 year mark. Take care
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congratulations!! That’s wonderful. Beautiful family. X
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Hi!
I am looking at stopping tamoxifen NEXT MONTH to try to conceive! While I'm excited... it's starting to "get real" and I am also starting to get quite anxious about the whole prospect of it. Mostly the idea of being off my meds. I need stories from people who have done this already. I know the POSITIVE trial is out there, but they won't have results from that in time to help me.
I was diagnosed and treated 2 years ago. Currently 34 going on 35. My 2 years of tamoxifen will be up at the end of the month. Onc advised that I do a 3 month wash out period, then try to conceive. He also said I should only try for about 6 months, and if I cannot get pregnant, to give up at that point. I did not do IVF... could not afford it and I didn't feel comfortable with it, but I know that is deeply personal. So... here I am... about to turn 35.... and I only have a 6 month shot at getting pregnant.
We have no children. If this works out, this would be our only one.
Any advice from someone in a similar situation? Is there anything you can do while you are off tamoxifen to cut your recurrance risk a little? I plan on going back on it after I've (hopefully) had a baby.... but I wish there was something supplemental I could do for my health during the time period or so I'll be off of it.
I'm so jealous of all the "regular" people who can have a relatively stress- free pregnancy... mine seems infinitely complicated. Not exactly the way I planned.
Thank you so much for any advice!!
Sarah
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nem126- Hi! I did 2 years of tamoxifen and then stopped for 1 month before trying to conceive. We also didn't freeze eggs or embryos. My fertility numbers were not great, but my oncologist said that miracles happen and to go for it. We conceived in the 6th month. Unfortunately we had a missed miscarriage at 10 weeks which was beyond devastating. Our oncologist said to try for another 6 months, and again we conceived on the 6th month! My fertility specialist said it didn't make sense with my numbers. Being pregnant was SO healing for me. As far as what I did off tamoxifen, it was what you do anyway when you are trying (eat well, exercise moderately). I re-started tamoxifen 6 weeks after my beautiful baby boy joined our family. Oh and I was 34 when he was born so very similar to you in that regard. For us, the risk did not deter me or my husband, but we definitely discussed the what-ifs. I know we were very fortunate to conceive. Good luck!
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Hi clarrn! Thanks for replying!
It's good to hear that being pregnant was healing for you. I can't tell how I'm going to feel about it, I hope eventually the same way. Right now I'm excited but my anxiety is really picking up too. Just seems like so many things could go wrong. But, all I can do is try. It's interesting that you were allowed to start trying after one month- my doctor is telling me wait 3. I looked up the half life of tamoxifen- 7-14 days, so you would think a month would be totally safe. Not sure why he has me waiting 3.
Congratulations on your baby!!
Sarah
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Hi Sarah,
I came off arimidex and zoladex 2 months ago now. I think by far the thought of stopping all meds, was worst than actually doing it. I feel so much better since, I feel like my body is working as it should for once, no more hot flushes etc..anyway, I got my period back after 5 weeks and my fertility specialist is tracking my cycle to see if I’m actually ovulating. So far so good. I’m in a similar situation in that I have no kids. I’m also 38 now, so for me its now or never.
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Hi Sophiemara!
I wish you the best of luck- let’s keep each other updated on here. It would be nice to be able to go through this with a pen pal
. I’m glad to hear that stopping meds wasn’t so bad. I’m hoping my anxiety won’t last too long... maybe it’s just the time period leading up to it that’s hard.. second guessing my decision etc.
Hope to talk to you again soon!!
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bearcat13:
I was 38 when I was diagnosed, and still had the idea of starting a family on the table, and did not have time to preserve my fertility. A lot of people act like it would have been impossible for a 38 year old to conceive, which upsets me because I actually had some fertility testing not long before that which indicated that my odds of having good eggs were high, and my mother easily got pregnant at 39. I really feel like the fertility of women in their late 30s and early 40s is underestimated.
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Dear young ladies,
my daughter (see stats below) is in her 4th month pregnant now. After stopping Tam for 6 months she immediately conceived. She had not freezed eggs and had not taken Zoladex during chemo.
I hope this makes some of you feel optimistic.
G
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