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 01:03PM

Posted on: Jan 25, 2011 01:03PM

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 26, 2011 10:42PM bearcat13 wrote:

Thanks so much for your post Hadley, I really appreciate your support.

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Jan 27, 2011 09:07AM jdeking wrote:

My physician said that I would need to stay on Tamoxifen for 2 years if I wanted to stop. Why 2 years? I really have no idea if that is a magic # of if you would be ok at 1 or 1/2 years.

I am in the same boat over here having just turned 36. Adoption will probably not be an option, as Texas law is really strict and health issues are usually a guaranteed rejection.

Good luck with your decision, and keep us posted!

Dx 1/6/2009, IDC, 1cm, Stage IIA, Grade 2, 2/10 nodes, ER+/PR+, HER2-
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Jan 28, 2011 10:56PM bearcat13 wrote:

Hi J, Thanks so much for your reply.  I'm so sorry to hear that adoption is not an option for you and that you're in the same boat.  At least for us health doesn't rule adoption out entirely - it's more that my husband and I both have issues that is the problem.  That said, the UK adoption system is a nightmare with only 76 babies adopted last year. 

The two year rule does seem somewhat aribitrary doesn't it?  I just find it so frustrating that there is no data to help us out with making a decision!  Are you planning to stop at the two year mark to have a baby? Do keep in touch. xx

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Feb 1, 2011 10:35AM tea wrote:

I'm also struggling with this decision right now.  Next month will mark one year on Tamoxifen, 18 months post-diagnosis.  I'm 38 so the clock is definitely ticking (although I do have one child, we were getting ready to try for a second when I was diagnosed).  All the doctors I've talked to about this are OK with me taking a break - although they disagree on when would be the best point (I've heard everything from start right now to wait 2 years).  My cancer was at an earlier stage, so I suppose that's in my favor (although I worry that since I didn't have chemo it might be more likely to come back).  At this point, I'm leaning toward waiting until after my next scheduled mammogram, which will give me 2 more months on the Tamoxifen.  Good luck with your decision.

Dx 8/28/2009, IDC, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 1, 2011 01:12PM sakura73 wrote:

Hi Lisa

These issues are so difficult. May I ask, are you still on Zoladex too? I assume you will need to come off that as well if you are going to conceive.

My story started a lot like yours; diagnosed in Jan 2009 at 36, had chemo together with Zoladex for six months, then radiation. My period came back 6 months after the last Zoladex shot (that was just a year ago now). I had surgery to preserve ovarian tissue before chemo started; it is still in the freezer. Since my period came back I have had one pregnancy which miscarried at 3 months, and am keeping my fingers crossed in relation to a second. So it seems things are kinda working again.

 But our stories are different too;  I'm not a girl who came off Tamoxifen early, because I decided after a LOT of soul searching not to take it at all. I felt there WERE statistics which showed that after chemo, Tamoxifen's additional protection was quite limited and, for me, not enough to justify a 5 year deferral of child bearing. I also saw recent evidence that in some ways pregnancy can be protective rather than a new risk. So after long debate with my oncologist I refused the Tamoxifen and decided that I would live with a slightly higher risk of recurrence than I would have had if on Tamoxifen (bearing in mind that Tamoxifen doesn't always work anyway). He disagreed with me but he accepted my decision. That was 15 months ago, and so far, so good.

The available evidence suggests that women who conceive after cancer don't have higher recurrence rates. The numbers of such women are very few, which makes statistics of limited value.  And yes, there is no data on 5 years vs 2 years on Tamoxifen. You have to decide which risk you can live with; a perhaps higher risk of recurrence, vs a MUCH higher risk that you won't be a parent. And no one, in the end, can make that choice but you. 

 The cancer you had sounds larger and more aggressive than the one I had. It may be for you the protection offered by Tamoxifen is more substantial.  But keeping our bodies safe from cancer is only part of the issue, isn't it? We want to be  healthy because there are things we want to do with our lives, like have children. Being healthy is not merely an end in itself, it is a means to an end.I decided that the chance of being a mother was too important to give up, and so I decided to take the increased recurrence risk.

So, for what it is worth, knowing the very little about you that your opening post reveals, if I were you I would stop the Tamoxifen and go hell for leather at having that baby I so want.

 But that's me; it may not be you. These things are hideously hard. You're in my thoughts as you make your decision.

Rachel

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Feb 1, 2011 08:41PM who_knew wrote:

I'm glad I found this thread. I just started Tamoxifen and I'm feeling kind of lost. 2010 was a VERY bad year for me. I miscarried in January and in July found the lump - the rest is history, as they say

I just finished the TC part of TCH chemo and have herceptin for another 7 months. I'm 36 now and my husband and I would very much like to have another baby but with the 5 years on tamoxifen it doesn't seem possible. Can't even think about it really until the herceptin ends (Sep2011 and I'll be 37 then).

My Onc told me we should just forget about having another baby because we have two beautiful daughters. A year and a half ago I would've agreed with him but after the miscarriage I've really felt like we are missing out by not completing our family. Its probably more that I don't like having the choice of having a third child taken away from me but I am frustrated at the lack of information there is about this.

Dx 8/9/2010, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Feb 2, 2011 06:02AM hope2 wrote:

i am not on tamoxifen so diff scenario really, i had done ivf at 34 after trying unsucessfully for two years, i discovered that i had occult ovarian failure and auto immune bloods showed high levels of antibodies so because of regular period (like clockwork) and age they were giving me a 2nd go at own ivf and lots of euros as completely private here for fertility treatment, i am in ireland, anyway i was not happy with breast lumps and decided to get them sorted once and for all and not being fobbed off by gp and breast clinic with small dense lumpy breasts. i was on the pre adoption meeting list for foregin adoption at this time but did not work out because of cancer have to wait for five yrs clear to apply or so social worker told me at the meeting.

anyway i am hoping to go ahead this year as had transvaginal ultrasound, hysterscopy and dnc in november that discovered my ovaries are back up and running after chemo pause, perfect size and releasing hormones, whether they will produce an egg is another matter entirely, everyone would have thought i would be in permanent menopause after chemo but thankfully not. i have to get a letter off my oncologist to say it is o.k.to proceed and we have agreed on 2.5 years out from diganosis. the lyster clinic in london is getting great reviews here in ireland for high fsh'ers and unfavourable amh results but i do not know if they take nhs patients as our health board do not cover ivf.

there is a great uk website on fertility issues and they have lots of different threads about options and people that have gone through premature ovarian failure as a result of cancer treatment and are going down the donor egg route or those with multiple ivf failures and are still strong enough to carry on with the rollercoaster of emotions that is infertility. this may not be an option for you but might be something to think about.

best of luck and take care. 

Dx 4/30/2009, IDC, 6cm+, Grade 3, 0/22 nodes, ER-/PR-, HER2-
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Feb 6, 2011 01:47PM bearcat13 wrote:

Hi everyone

Thanks so much for your messages and support - what a lovely thing to come back to after a week away! 

Tea - thanks for sharing your experience.  It's interesting how varied the advice is on this.  Those two months will just fly by, I wish you lots and lots of luck. 

Rachel - I am on Zoladex and it's playing havoc with my moods.  For the two weeks after I take it I'm really down and tearful.  Horrible stuff!  Apparently Zoladex is used to down regulate your cycle in IVF so I would stay on it until I go through egg collection during IVF.  I'd then have to come off it throughout pregnancy.  I'm sorry to hear about your miscarriage and will keep everything crossed for you that this second chance works out - how exciting!  You have a very valid point about health being a means to an end rather than an end in itself.  Tamoxifen has marginal benefits for me as well (my cancer is weakly hormone sensitive) and I, too, have heard that pregnancy has a protective effect against breast cancer.  I am leaning towards just going for it and coming off the tamoxifen (with the agreement of my oncologist), but I think I'll only be able to take that decision after my test results.

Who knew - I'm sorry to hear that you're in the same boat and it is completely understandable that you should want to complete your family as planned.  One of the worst things about cancer is that it takes away all kinds of decisions from you. If you feel very strongly about this, you have the right to raise it wtih your oncologist again and ask for a very clear picture of the pros and cons of a third pregnancy.

Hope 2 - thanks so much for your words of support and for sharing your story and also for the recommendation on the clinic.  Good luck with your next round of treatment, fingers crossed it will be successful.

 Hadley - thanks again for your words of encouragement.  I'll let you know when I know more.

Take care all

 lisa xx 

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+
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Feb 9, 2011 08:34PM sakura73 wrote:

Lisa - thank you for your having everything crossed; I have had the 12 week scan and things look good so far! Do let us know when you have more information; thinking of you.

 R x

Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Feb 11, 2011 04:26AM bearcat13 wrote:

Hi Rachel,

 What wonderful news!  Still no news on my side, they've asked me to call back next week.  I had one of my oldest and dearest friends offer to be a surrogate for us if we decided to go that route.  I don't think we will because it's just so complicated, but what a wonderful, generous thing to offer.  Some of my friends are just wonderful.

Good luck with the next few weeks

Lisa x

Dx 3/9/2009, IDC, 6cm+, Stage II, Grade 2, 1/14 nodes, ER+/PR-, HER2+

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