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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 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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Jan 2, 2020 07:21AM - edited Jan 2, 2020 07:22AM by nem126

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



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 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 2, 2020 10:31AM Firecracker73 wrote:

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!

Dx 1/20/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 2/16/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/16/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 3/29/2018, IDC, Left, 3/13 nodes, ER+/PR+, HER2- Surgery 4/18/2018 Reconstruction (left): Tissue expander placement Chemotherapy 6/5/2018 AC + T (Taxol) Radiation Therapy 12/27/2018 Breast, Lymph nodes Surgery 9/4/2019 Prophylactic ovary removal Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Lymph node removal: Underarm/Axillary; Reconstruction (left): Tissue expander placement Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 2, 2020 11:47AM Gudrun wrote:

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

Myself: dx at 55 in 2013, ILC, stage IIa, G2, ER+/PR-/HER2-, KI67 20%, BMX, Letrozole 5.5 years. Daughter: dx at 28, stopped antihormonals after 2 years to have a baby and restart tx afterwards: 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 Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left; Reconstruction (left): TUG flap
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Jan 3, 2020 08:16AM berries wrote:

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

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/29/2020 Xeloda (capecitabine) Hormonal Therapy 5/7/2020 Arimidex (anastrozole)
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Jan 3, 2020 08:18AM berries wrote:

Firecracker- how long was your sister on Tamox before she got off? Has she gotten bak on? What a beautiful story!

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/29/2020 Xeloda (capecitabine) Hormonal Therapy 5/7/2020 Arimidex (anastrozole)
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Jan 7, 2020 07:55PM IM2C wrote:

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.

Dx 5/2019, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy Other Targeted Therapy Perjeta (pertuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jan 13, 2020 08:41PM Hope419 wrote:

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?

Dx 4/21/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 5/18/2016 AC + T (Taxol) Surgery 9/12/2016 Lumpectomy: Right
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Feb 1, 2020 05:41PM caligirl76 wrote:

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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Feb 2, 2020 08:52PM - edited Feb 2, 2020 08:59PM by wordsontour

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!

Dx 10/23/2015, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/23/2015 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 2, 2020 09:24PM caligirl76 wrote:

@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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Feb 7, 2020 03:18PM fd1 wrote:

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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Feb 7, 2020 04:58PM caligirl76 wrote:

@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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Feb 7, 2020 11:54PM Gudrun wrote:

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

Myself: dx at 55 in 2013, ILC, stage IIa, G2, ER+/PR-/HER2-, KI67 20%, BMX, Letrozole 5.5 years. Daughter: dx at 28, stopped antihormonals after 2 years to have a baby and restart tx afterwards: 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 Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left; Reconstruction (left): TUG flap
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Jun 21, 2020 01:51PM ButterflyLily wrote:

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)


Dx 11/18/2017, DCIS/IDC, Left, <1cm, Stage IIA, 1/13 nodes, ER+/PR+, HER2- Surgery 1/10/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 2/8/2018 AC + T (Taxol)
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Jun 23, 2020 03:02PM Blue311 wrote:

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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Jun 23, 2020 03:46PM Moderators wrote:

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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Aug 18, 2020 10:33PM HolaSandy wrote:

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

Kristyn. Age 32 at Dx, nurse, wife, mom. Know that there is something inside you that is greater than any obstacle. Dx 2/3/2016, DCIS/IDC, Right, 4cm, Grade 3, 1/9 nodes, ER+/PR+, HER2- Chemotherapy 3/11/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/7/2016 Mastectomy: Right Hormonal Therapy 10/4/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 11/8/2016 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 20, 2020 08:48PM smiling_brenda wrote:

@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

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: Right; Lymph node removal: Sentinel Chemotherapy 8/1/2019 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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