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 - 990 (1,008 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.
Aug 23, 2019 05:43PM tatasister10 wrote:
HI girls! I so rarely get on here anymore, but I love to check in from time to time. You all are more then welcome to message me on facebook or instagram. Send me a message for my name. As some of you have read on my previous posts, i was diagnosed in 2011 when my daughter was 4 months old at the time. She is 8 now. I went on to have twins following my diagnosis. They were born in 2017 and are 2 and a half now. I was er + pr+ her 2 +. I had to come off lupron and tamoxifen to get pregnant. I did ivf and retrieved eggs 4 years AFTER chemo. Meaning my overies were fine after chemo. Please message me with any questions. Its so possible to have babies afterwards. Please dont give up hope. Im living poof. My twins are living proof. Ill be 8 years out in october. I was 25 at diagnosis.
Aug 24, 2019 03:29PM - edited Aug 25, 2019 10:07PM by ButterflyLily
your story inspires me. i was also ER+/PR+ with one node. I had mastectomy and chemo. I did ivf before i found out i had BC and have frozen embryos. i would love to have a baby but am afraid to stop tamox and get pregnant by transefrring an embryo. my doctor told me she may let me stop the tamox after 1.5 years which will be in december this year. but since i was so estrogen positive I'm really scared of it coming back if i stop tamox and get pregrant. how long did you take tamox before you stopped? and did they give you hormones with the IVF after the BC? you are brave.
Sep 1, 2019 10:56AM Nickel103 wrote:
hi all, just wondered if anyone has any experience with this. I have been on lupron for 2 years. My reproductive endocrinologist just had my AMH tested and it was .01 which is obviously depressingly low. But would not the lupron be causing this since my ovaries are completely shutdown? Has anyone’s AMH gone up after stopping lupron or zoladex
Sep 4, 2019 03:22AM - edited Sep 4, 2019 03:25AM by Sophiemara
Hey Nickel, sorry to hear that. My fertility specialist said zoladex etc protect to a certainextent but they are not full proof. Mine is 0.07 and I'm 38. He said obviously AMH goes down with age also, so it's a double whammy really. He said my AMH would have been worse without zoladex. However as long as you are ovulating and have dominant follicle each month that's all that really matters. Plenty of women with low AMH go on to have children. Just make you use predictive monthly kit to assist. Good luck. I've been trying for 4 months naturally now. It's not that we cant get pregnant, it's just it might take a little longer. Have hope!
Sep 16, 2019 06:27AM tatasister10 wrote:
hey girls. Yes yes yes. Your amh will go up. I had mine tested on lupron and tamoxifen and it was horrible. I tested again with both out of my system for 5 months and it was close to perfect. Somewhere on this thread I posted about that, but youd have to scroll back some. As far as the other post...I was highly er pr positive. My dr gave me all the info that said getting pregnant didnt raise my risk of recurrence. I can hands down say it waa thw scariest decision of my life. I pictured myself jumping with out a net below. Thats what it felt like. I studied and studied and studied the data. I combed over endless clinical trials before sayinf ok. Lets do this. Best decision I ever made. I had twins after breast cancer! I WHOLEHEARTEDLY believe that happened to me so that I could help others believe in their dreams. I was on tamoxifen for 3 years before I stopped to get pregnant. I Did have hormones to get pregnant with ivf...which brought its own special fears...but my dr explained that if I hot pregnant, I would have a ton of hormones anyway. They (ivf clinic) also had a special protocol for bc patients. I took a pill...i cant remember what it was during my ivf phase of injecting hormones. It was to protect me from the excess hormones. It may be in this post somewhere too.
Sep 16, 2019 06:29AM tatasister10 wrote:
Sorry for the typos...the post breast cancer twins of mine are crawling all over me. 😁 go make babies girls!
Oct 14, 2019 02:29PM nem126 wrote:
Still trying to get pregnant naturally here- no success yet.
As a side note, my fertility Dr. said that if I decide to go the IVF route, I can take letrozole during the process, which essentially cancels out the hormones and keeps everything in check. So, something to consider I guess.
Oct 25, 2019 07:02PM tatasister10 wrote:
yes, thats what I did. I was in that during the stemming phase of ivf. It worked.
Oct 29, 2019 12:33PM fd1 wrote:
Hi All! Checking in after some time. I had chemo in 2012 with Lupron and was then on Zoladex/Tamoxifen from then until mid 2018. When I stopped taking it, I got my period almost immediately but we waited until March of this year to start trying. It took 7 cycles, but I'm now 8 weeks pregnant at 38. It's still early, but the fact that I actually got pregnant is so wonderful.
Oct 29, 2019 05:43PM berries wrote:
that's wonderful news, congratulations to you!!!!!
Hope to be in your shoes in the future. I was diagnosed in August of this year at 34 as we were about to start trying. We have 8 embryos frozen and pray that we are able to use them to try in a few years. Best of luck with the rest of your pregnancy and keep us posted!! xx
Nov 13, 2019 05:37PM berries wrote:
I just thought I would check in to see how you ladies are doing in your journey to become pregnant. I know I am a FAR way from starting to try as I was just diagnosed this past August at 34 years old and I'm not even half-way through chemo, but reading your stories has given me hope that maybe it will be in the cards for my husband and I. We have 4 healthy embryos (2 boys and 2 girls) waiting for us.
Like you, I've combed through every article and study I could find about increased risk of recurrence and it all seems to be promising, but I don't know what to trust... it just seems so counterintuitive. Increase the same hormones that cancer feeds off of and no negative outcome? How does this even make sense?
Has anyone explored surrogacy?
Best of luck to you all. xx
Nov 24, 2019 05:59AM MirandaPriestly wrote:
just checking in with some happy news: after coming off tamoxifen in May, I was super fortunate to get pregnant right away. I’m now 20 weeks pregnant with our first, a baby boy, and we’re so excited (and scared! Lol)! It’s really hard to believe it’s finally our “turn” after all the waiting.
I do have a little anxiety over not having the choice to breastfeed, but I suppose that’s to be expected and hopefully when he’s here I’ll be too busy and in love it won’t matrer
Background: dx at 31 yo 6/2016, stage 1 ER/PR +, genetic testing negative, bmx 8/2016, tamoxifen 9/2016-5/2019 (and plan to continue after delivery)
Nov 24, 2019 06:56AM - edited Nov 24, 2019 06:58AM by Gudrun
congratulations Miranda, so happy for you.
Little update in case somebody is interested: Babygirl is seven weeks old now, healthy and beautiful, got breastfed for about five weeks without any problems. My dd will be going back on Tam soon.
Love and good luck to everybody, Gudrun
Dec 2, 2019 10:27PM Nickel103 wrote:
VMB - I am using a surrogate. It is a long, bumpy, and expensive road. I can’t say I recommend it at this point, as we’ve still yet to have a pregnancy. We went this route mostly because after I found out I had lymph node positivity my husband and I were too afraid to risk anything with the hormones. I think we might have chosen differently if I’d been less advanced. I know this was one of the hardest choices and it consumed me while I was in treatment. Feel free to PM me if you are ever really thinking about surrogacy. There are some really great Facebook groups for intended moms using surrogates and it’s been a great resource. Wish I’d found themsooner. 8 embryos sounds great! So glad to hear happy pregnancy stories from you ladies. So nice for there to be light after all this.