Topic: Coming off tamoxifen early to have a baby

Forum: Young With Breast Cancer — Connect with those under 40 who have been diagnosed.

Posted on: Jan 25, 2011 03:03PM

Posted on: Jan 25, 2011 03:03PM

bearcat13 wrote:

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 x
Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Feb 25, 2022 08:21AM caligirl76 wrote:

@snowflower100 I’ve been there and it was a hard journey but SO worth it!I stopped tamoxifen, started trying and got pregnant right away but unfortunately miscarried. It took me almost a year to get pregnant again (from the time I stopped tamoxifen). I was off tamoxifen for a full 2 years for pregnancy and breastfeeding. I would suggest going to a fertility doctor to discuss your options. There are things you can do to help you conceive without doing full on IVF. For me, we did “timed intercourse” where they monitored me closely with ultrasounds and then told me when to have sex. My doctor specializes in oncofertility so I felt safe going the IVF route but she felt that it wouldn’t improve my outcome given my age at the time (40). Feel free to reach out with any questions!

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Mar 16, 2022 12:14PM - edited Mar 16, 2022 12:15PM by nem126

Hi SnowFlower,

I was there... I was 35 when I took the break. I didn't get pregnant, I think mostly bc of stress but who knows, so I went back on. I just finished up tamoxifen now. I'm going on 38. We are going to try again, but even though I'm older and I know there's a good chance of it not happening at my age, I feel less pressure now.

Luckily you are still very young... so even if you went back on it and completed 5 years and tried again, you'd still be young.

There's always the option of freezing eggs. You can talk to a fertility doctor about doing it without hormones too.

Wish you luck. I understand how isolating it is.

Diagnosed at 32. Life is weird! Dx 12/6/2016, ILC/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/11/2017 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal Radiation Therapy 2/28/2017 Whole breast: Breast, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 4, 2022 07:28PM domzie30218 wrote:

Hi everyone, I wanted to ask about people's experiences about getting off Tamoxifen to do IVF. How far ahead before the IVF process did you get off Tamoxifen? My fertility doctor says about 3 weeks is enough, is this the same in your experience? It feels too short to me but I'm not a doctor so just looking to see if other women had similar experiences/advice from their doctors.

Snowflower, I'm sorry that you've had delays in conceiving. I have not heard about the 2-year tamoxifen break in terms of length of time you can be off it. I know that my oncologist wanted me to be on tamoxifen for at least 2 years before getting off to try to conceive.

DX at 35 Stage 1A, 1.8cm, 1/16 nodes ER+ PR+ HER- (FISH), Surgeries: BX 4/12/18; Tissue Expander: 4/24/18; Exchange: Sometime in Sept 2018; Chemo: TC 4 cycles June 2018; Radiation: Sometime in the fall
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Apr 4, 2022 08:42PM caligirl76 wrote:

@domzie30218 it takes 2-3 months for the tamoxifen to “wash out” of your body. I started trying exactly 2 months after I stopped and got pregnant right away but miscarried. I’ve always thought I started trying too soon. Not sure why your doctor would say 3 weeks. I would ask your oncologist

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Feb 21, 2023 01:13PM smiling_brenda wrote:

I had a baby! Just wanted to share. I was on zoladex and arimidex for approx 2 years. Came off and (with some fertility help) was pregnant within 6 months. I had my second baby 6 weeks ago. I am breastfeeding but only from my non radiation side. My radiated side did not produce any milk. I plan to feed for 6 months or so then will have to go back on the meds (which I am not looking forward to!)

Dx at 34. Oncotype 22. Dx 5/1/2019, IDC, Right, <1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 6/10/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 7/31/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/9/2019 Whole breast: Breast, Lymph nodes Hormonal Therapy 2/1/2020 Arimidex (anastrozole), Zoladex (goserelin)
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Feb 21, 2023 05:27PM maggie15 wrote:

Congratulations! It’s always encouraging to read good news.

DX 2/15/2021, IDC, Right, 3 cm, stage 2A, ER+/PR+, HER2-

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