Connect with those under 40 who have been diagnosed.
Posted on: Jan 25, 2011 03:03PM
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 allLisa x
Posts 961 - 976 (976 total)
Apr 26, 2019 04:54AM 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.
Apr 26, 2019 03:19PM clarrn wrote:
Glad to hear that wonderful update Sakura73!
Apr 27, 2019 07:34AM 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?
Apr 28, 2019 07:23PM clarrn wrote:
I had a bmx so it wasn't an option for me.
Apr 30, 2019 08:55AM 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!
May 7, 2019 05:20PM - edited May 7, 2019 05:59PM 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.
May 13, 2019 01:13PM 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?
May 13, 2019 01:15PM 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!
Jun 4, 2019 09:59AM MirandaPriestly wrote:
Nem126 - interesting, I was curious if anyone experienced S/Es after stopping tamoxifen. I don't think I've noticed much except for some additional acne on my chin (but I have always had hormonal acne, so it's difficult to totally blame tamoxifen or lackthereof). I have an appt with my MO today and curious how that goes (I think he wanted me on it until our appointment, but my RX ran out a month a go and my husband and I agreed to not bother refilling for one more month).
Have a great summer - and best wishes! Maybe next time we connect we can be post-cancer pregnancy success stories!! :)
Jun 6, 2019 12:05PM Daye wrote:
Thought I would share my story with y'all since I have had a positive outcome, and we can always use more positive stories on these message boards :) I was dx at age 27 with stage 1. Ended up having lumpectomy, chemo, radiation, and later opted for a double mastectomy. I took Tamoxifen for almost 4 years and stopped early because I knew we wanted to start trying for a baby soon (my original pathology said the cancer was was ER+ at 44%, PR- and HER2-, but genomic testing and a second pathology result said it was triple neg). Long story short, I got pregnant at 32 just 3 months after having my IUD removed. I'm 14 weeks now and baby boy is looking good!
I know people have already pointed this out, but just as a reminder, all of the recent research suggests that getting pregnant after breast cancer does not increase your risk of a recurrence, and for some types of breast cancer, it actually seems to reduce the risk of a recurrence.
Stay positive and best of luck with trying to conceive!
Jun 11, 2019 09:05AM MirandaPriestly wrote:
Congratulations Daye and thanks for sharing your positive outcome! You are right, we can always use more of them around here.
I'm getting more and more anxious now that we can finally start trying. It makes me nervous that I'm 34 and it won't happen right away, or at all. I've also had several people comment that if I do get pregnant, it will be a geriatric pregnancy...which is not helping. My cancer was very ER/PR+, so obviously the shorter time I am off tamoxifen, the better, too.
Jun 16, 2019 03:29PM bearcat13 wrote:
Just checking in as a few people have asked about my health. I'm still here, still healthy. My son is 7 years old in July and lovely. Conceived with post cancer eggs and IVF. Wonderful to see the good news on this thread. Hang on in there, those of you trying to conceive. It is possible. Look after yourselves, it's such a tough thing to go through, but there is hope.
Much love to you all
PS Hi Sakura, lovely to see you still posting!! :)
Jun 26, 2019 06:03PM nem126 wrote:
Thanks everyone, for your kind words and for sharing your stories. Gives me hope and makes me feel a little less alone.
I’ve now been off tamoxifen for 2 months. Side effects have subsided and period is back to normal. And physically... I feel great! Forgot what it’s like to feel normal! Even if it’s just for a bit :)
I’ll start trying to conceive in a month. I’ll keep you all updated. Please do the same!
Take care, soul sistas ;)
Jul 9, 2019 12:00PM - edited Jul 9, 2019 12:20PM by Bingpot
Just wanted to share my positive story here as well, because I remember desperately lurking and searching when trying to figure out my fertility post-treatment.
I was diagnosed with hormone receptor positive cancer at 30, went through a lumpectomy, chemo, and radiation. And then four years on tamoxifen. While on tamoxifen, my blood work always indicated that I was in a chemotherapy induced menopause. And by year 3 on tamoxifen, my periods had not returned, several gynaecologists ( and internet research) told me tamoxifen does not affect ovaries or egg production, handed me a diagnosis of premature ovarian failure, and told me doner eggs would be the only chance of me getting pregnant.
(Fertility clinics also require you to have certain minimum/maximum levels on FSH etc to qualify for IUI or IVF, and I was far beyond all these thresholds)
So, not really having done any type of fertility preservation pre chemo, Husband and I more or less accepted this, got on a waitlist for adoption and tried to move on. However something made me want to try one last time , and I stopped taking my tamoxifen. 2 months in my period was back,very irregular at first but I determinedly stayed off the tamoxifen, and 2 years later they were somewhat regular , blood work number improved but not enough for IUI/IVF.
And then one random day, I felt something was off with me, not feeling great, took a pregnancy test, and it was positive!!!
I am 21 weeks today , no complications so far, baby girl looks good and havemy fingers crossed it stays that way!
Hang in there ladies... I hope we all find our bliss !!!
Edited to add : I am 37 currently.