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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 04:03PM

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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Apr 22, 2019 04:27PM Surire wrote:

hi i just saw ur post, I also wanna hav a baby within 2 years, what's the update with your health? Hope all is wel

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Apr 22, 2019 04:30PM Surire wrote:

hi I’m glad I found ur post, I HATE zoladex!! It’s a nightmare I hate the hot flashes, I’m so scared to hav a baby, what if I get cancer again? It’s Terrifying, what’s ur update with your health! Hope all is well, thanx

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Apr 26, 2019 05:54AM sakura73 wrote:

Hello all. Checking in here after years away, as one of the original posters on this thread. I finished chemo and radiation in 2009, my period returned (after Zolodex) in February 2010. Didn't do Tamox at all because I wanted to conceive. My son Arthur was born in August 2011 and my daughter Cecilia in June 2014. Now in April 2019, aged 46, I still have my period, still am fertile (though not planning more kids!) and I am well. Our bodies are amazing. They can do wonders. I send all of you my love and best hopes for happy outcomes for you.

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Apr 26, 2019 04:19PM clarrn wrote:

Glad to hear that wonderful update Sakura73!

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/7/2014 AC + T (Taxol) Radiation Therapy 10/14/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/22/2015 Reconstruction (right): Silicone implant
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Apr 27, 2019 08:34AM Gudrun wrote:

Dear young ladies who were lucky to have a baby after breastcancer. I'd like to ask you one question:

If your cancer was hormone positive, were you allowed to breastfeed your baby before recommencing Tamoxifen?

Is this possible?


Daughter dx at 28: Dx 8/2015, IDC, Left, 3cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ (IHC) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left; Reconstruction (left): TUG flap
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Apr 28, 2019 08:23PM clarrn wrote:

I had a bmx so it wasn't an option for me.

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/7/2014 AC + T (Taxol) Radiation Therapy 10/14/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/22/2015 Reconstruction (right): Silicone implant
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Apr 30, 2019 09:55AM MirandaPriestly wrote:

nem126 - our stories are very similar! I was dx'd at 31yo on 6/14/16, so coming up on 3 years. I was also Stage 1 ER/PR+, HER2- and had no lymph nodes impacted, but I opted for a BMX (so no chemo or radiation for me). I have been on tamoxifen since 9/2016 and am down to my last 5 pills. My onc is also having me wait 3 months to start trying (and my MD husband was also curious about the wait due to the relatively short half life). I am right there with you, though - I have been waiting for this day for the last 2.5+ years, but now that it is almost here I am nervous!

As far as reducing risk while off the meds, I'm just going to try to stay active (and maybe drop the annoying 10lbs I have gained on tamoxifen despite working out more than ever and no negative changes to my diet, ugh). We're also planning on traveling a lot this summer - just keep our minds off of the stress and hopefully enjoy the last summer as a family of two :).

Best of luck!

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May 7, 2019 06:20PM - edited May 7, 2019 06:59PM by sakura73

Gudrun, I never did Tamox at all so I am not quite the right person to answer your question. I did breast feed both of mine from my one functioning breast (the one that had been radiated did not produce any milk) - breast feeding is itself protective against cancer, so if you have the option for even a few months I would definitely urge you to do it. Breast feeding was such a healing experience for me. It really made me feel my body was working again.

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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May 13, 2019 02:13PM nem126 wrote:

Miranda- best of luck to you!!! I hope all is going well!!! Let's keep each other updated!

I stopped tamoxifen about 2 weeks ago, and I'm actually doing alright mentally, but I've had a few weird side effects I didn't really expect. I have some pretty bad eczema on my face, which I've never had before. I'm also now on day 38 of my cycle and no period... while my periods were a little irregular on tamoxifen, I've never been this late. Odd. I really don't think I'm pregnant... iud and condoms... would have had to have been some very persistent super-hero swimmers!

Hoping this subsides. Anyone else have side effects when they stopped tamoxifen?

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 1/12/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 3/1/2017 Whole-breast: Breast, Chest wall
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May 13, 2019 02:15PM nem126 wrote:

Miranda- I'm also taking prenatal vitamins, tumeric capsules, and reishi mushroom capsules- mostly for the anti- inflammatory benefits. Figure it can't hurt. Diet and exercise too, of course!

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 1/12/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 3/1/2017 Whole-breast: Breast, Chest wall

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