Coming off tamoxifen early to have a baby
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Hi ladies
I'm new to this site and after reading lots of your comments I'm in a very similar position to lots of you.
My name is Claire and I'm 32. I was diagnosed with bc 2 years ago. I had a lumpectomy, chemo (fec) and radiotherapy. Before I had chemo they sent me to freeze some eggs as I want more children, after a forced cycle my folicle sacks enlarged but unfortunately they were empty (no eggs)!!! I also had zolidex while having chemo.
I'm now taking tamoxifen and have been for 18months.
I have a 9 year old daughter with an ex partner. My partner I'm with now doesn't have children.
I'm so desperate to have a baby but too scared to come off the tamoxifen early!
Any advice would be very much appreciated?
Claire xx0 -
Welcome Rutts!! That's good that you have already been on tamox for 18 mths. What does your onc think of you coming off it? A lot of women here have come off it after 2 years. I stayed on for 4 years.....which was more to do with me than my onc...So have been off it a year now and am on Clomid to move things along quicker as i'm 38 and have been trying 8 mths. You have a great chance as you are still so young. Have your periods returned after the Zolodex? I took that too. Everyone is different with different circumstances and the reality is that with the exception of the advise and experiences of others on this forum there is very little other information for us to go on. I feel your desperation...I have no kids or either does my husband and like that I would just love for him to be a dad. It's only natural. Talk to your onc and then it's all about doing what is right for you and your family xxx good luck
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Thanks TessmereldaC
No my periods haven't come back. I've had very small signs that they might return but nothing like the real thing. I've not spoken to onc yet as I wanted to research a little 1st but finding that difficult as things are very different for each individual person. I asked my gp if there was any way of testing me to see if I'm still fertile, as I feel I would be able to cope with the next 3+ years waiting to have a baby if I know I've got a good chance, but all he suggest was a blood test to check hormone levels. We did that and they came back normal but that doesn't actually tell me I'm still producing/fertile.
Good luck to you and I'm sure you won't have to wait much longer
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Hi Rutts. Welcome! The best way to tell if you are still fertile (although it's not absolute either!) is to test your anti-malarian hormone levels (AMH). Unfortunately, this cannot be done while you are on tamoxifen because the drug alters that hormone pathway. I had my AMH tested a year after coming off tamoxifen. It was undetectable; bummer! I'm 36 now and my fertility was fine before chemo. But, my reproductive endocrinologist is still hopeful and I'm taking fertility drugs now. My doctors specialize in pregnancy after cancer and even they couldn't run any fertility tests on me until the tamoxifen was out of my system
I've got to run but will write more to tell you my thoughts on tamoxifen later
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Thanks for your comments slg76 it's very much appreciated and I would love to hear your thoughts on tamoxifen. It's so nice to finally talk to people in very similar circumstances and hear their experiences
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Hi all,
I haven't posted anything for a while as I'm just approaching 1 year on tamox so i knew there is nothing i could do up until now. I'm still thinking of 1 more year, then trying for my baby break after a total of 2 years. I'm curious how long everyone was on tamox before having their break and are you all planning on completing the 5 yrs down the track? My onc said there's little point once u take such a long break but i told him i'd rather complete the 3 yrs after a baby for peace of mind and he said i could if i want to.
My other question is - it seems lots of you aren't having periods while on tamox. mine are 35 day cycles, but very regular. is that normal? i had zolidex to shut down my ovaries during chemo in the hope my fertility would b less affected, and my period returned about 6 wks post chemo and have continued through tamox. are there others who have this?
good luck and congrats to all those on here with success stories. i really hope i can join u all soon... staying optimistic
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Hi Angelbaby, Nice to hear from you.
I'm currently trying for a baby after 18 months on tamoxifen. My doctor wanted me to take at least a year of tamoxifen before coming off. She absolutely insists that I go back on after to finish the 5 years and I plan to do that. There isn't a whole lot of data to support or refute this but my thought is that you have a defined number of years before menopause during which you are at a higher risk of ER+ recurrence. If you can protect yourself with tamoxifen during more of those years you will be better off. However, my logic fails a little when the data says that 10 years of tamoxifen doesn't significantly cut the recurrence risk any more than 5 years.
I didn't have periods on tamoxifen. But, I was dx when I was pregnant and my periods just never started again after I had my daughter. It is completely normal to have your periods while on tamoxifen. Some people do and some don't; not sure why. What I learned recently is that having a regular period does not necessarily mean that you are ovulating. Your doctor can check for ovulaton after the tamoxifen is out of your system.
Good luck and keep us posted while you are deciding what to do.
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Hi angelbaby1 I also had zolidex during chemo and my periods showed signs of coming back but never came back fully. I get a slight 'show' every 2 months but not enough to call it a period however I do get emotional and mood swings. I'm 18months into tamoxifen and haven't spoken to my onc about having a break as I wasn't sure this was an option, but after reading lots on here I am defo going to talk to them.
Claire xx0 -
Hi Claire (Rutts)
I'm so glad you found us. This group is really helpful for me. Makes me feel supported in such an uncommon situation.
I know we all wish that there was more data on tamoxifen/pregnancy/recurrence but it really is such a grey zone. Such personal decisions!
I came off tamoxifen after 18 months and plan to go back on it after I have another baby. The data I have looked at says that pregnancy itself does not increase the risk for recurrence. However, coming off the tamoxifen takes away the hormonal protection you were getting so that could increase the risk of recurrence. The risk of recurrence when coming off tamoxifen early is small but "small" may have different meanings for different people.
I felt that 18 months gave my body a good start on tamoxifen. I came off because I'm 36 and didn't feel that it fit in my life plan to wait until I was 40 for a second child. Also I knew my fertility was diminishing and the longer I waited the chances of having another biological child went down. I have done well with treatment and it seems that I am cancer-free now. I didn't want having cancer so young to control and define how I lived the rest of my life. I'm very careful about follow-ups in hopes of detecting any recurrence very early but other than that I want to enjoy my health while I have it!
Hope my story helps a little. Have you talked to your onc yet?
Can I ask? Did you only realize your follicles were empty after they went to retrieve the eggs? I worry about this for myself but am not sure they can tell if my follicles contain eggs since I'm not trying to harvest them. I just want to ovulate and fertilize the eggs!!
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Slg76... Yes it was after 'egg collection' the doctor was sat next to my bed when I woke up from the anaesthetic to tell me the bad news. It does worry me as the gynaecologist wrote to me to apologise that they couldn't explain why that had happened as it was rare for that to happen.
I haven't spoken to onc yet as my next appointment is march next year... They changed my check-ups to yearly when I saw them last as they said I was doing so well. I hope that is a good sign. I'm due to go on holiday in 3weeks so I'm going to see if I can get in to see my onc after hols thank you so much you have helped lots
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Angelbaby1 - yeah I was the same as you. took Zolodex and periods returned a few months after coming off it while still on Tamox. All my adult life my periods were all over the place but since they came back they are pretty routine (but longer - average is 28 days - mine are around 38-40 - accu played a big factor in this). And yeah it is a real curse that you have to wait until you come off tamox to check your AMH....would be so handy if you could check first!! My AMH is 27 so i'm super happy with that.
Rutts - have you tried acupuncture?? Highly recommended.
Sig76 - good luck with the ultrasound tomorrow!!! Everything crossed for you!! xx0 -
Claire--So sorry to hear about your attempt at fertility preservation. What a disappointment, especially when you didn't have the opportunity to try again! Sorry that you are now in the same boat as the rest of us. I couldn't do any fertility preservation because I was pregnant at the time and because my cancer was growing too fast to wait. Time between biopsy result and chemo was 3 days and that was only because it was a holiday weekend.
I also highly recommend accupuncture. My period had been gone for 2 1/2 years and it came back the month I started accupuncture.
Tess-I have my fingers and toes crossed for you too. I've been thinking about your scan for this weekend. I didn't realize your AMH came back so high. Great news!!! Last month I only had one follicle that was potentially good. Hoping for a better response this month. The drugs went so much better this time around; very little side effect. Sun. is Father's Day here in the States too. I'm taking my hubby and daughter for a picnic lunch and hiking.
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Ah thanks I will definitely look into acupuncture
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I had my US today to check follicles after Letrazole pills. I had one good sized follicle. It is ok news and is the same as last month. My doctor says she doesn't think I'm responding to the medication and that I probably produce the one follicle naturally. My doctor likes to see 2 or 3 big follicles. We are of course still trying this month. If this doesn't work I have the option of increasing my dose (again) of letrazole or using injectables for the next cycle. I would like to use injectables but think that we probably need to do another letrazole cycle due to cost. Our insurance doesn't cover infertility. Letrazole plus ovulation shot=$150. Injectables plus ovulation shot=$1,200! Either way there is also $350 for the ultrasound.
Have to admit that the extra cost of having a baby makes me a little angry at the cancer again!
Interesting note: my doctor says that even if I use injectables she would have be use letrazole too since it will keep my estrogen levels low and reduce risk of cancer issues.
Tess--Still hoping for several good follicles for you
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ah Sara/Sig76 I'm really sorry there was not more than 1 follicle. Still there IS one so fingers crossed for that one good sized fighter!! I think I would be like you and would up the dose again and I completely agree about being annoyed at the pricing - it is scandalous. Cancer was a challenge enough in our lives it is so frustrating that after you get over that hump that there is another one waiting for you after that...one of the reasons I dragged out the getting pregnant bit....wanted to be strong enough for the next challenge. Having said all of that we have all proved that we are amazing super strong women and are ready for any challenge....a challenge that will be so worth winning. So let's keep our eyes on the prize!!!
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wow, seems to be a few fertility issues going on even after the use of zolidex
i thought it gave our ovaries pretty good protection. good luck with the treatments and keep me posted as i'm yet to look into any of this.I've made up my mind that i will do 1 more year of tamox so it will be 2 all up. and even thought my oncologist says there is little point I am still going to complete the last 3 years after a baby. really annoying they cant test fertility while on tamox. would love to just know either way so i know what i am in for. i didnt go with ivf so havent left myself with many options unfortunately. just have to stay positive and believe i will b able to fall pregnant naturally.
Good luck again to all. I look forward to hearing some good news soon. For all your sakes but also to give me hope
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Hey Angelbaby1 - yeah I took zolodex but I guess either way I may have had issues getting preg despite cancer, etc.............who knows. I think it takes time for your body to readjust after tamox or any meds plus i'm 38 so that can have a baring. But I hear you on the AMH test - would have loved to have it and stay on Tamox but having said that my AMH is good so i'm super positive about the clomid working
I think I could get preg naturally given time. How do you mean about IVF? Clomid and IVF could still be an option for you if you don't convieve naturally............0 -
yes, true about not knowing whether fertility issues are due to chemo or not. i think i was told by my fertility specialist there was about a 90% chance of my fertility being protected and unharmed with the zolidex. i liked those odds. and boy did i have menopausal symptoms! so really hoping it did work!
Yeh i know there are still some options, i just meant i didnt freeze any eggs beforehand which i was told would give me the best chance of a baby. like i said, i really havent looked into what will happen if i am unable to conceive naturally. Im just trying to live my old normal life while completing the early days of the tamox and then try my luck with the babymaking. i will b requesting the AMH test though to see what i am dealing with. For now I will see through another year and keep an eye on here in the hope of lots of baby news!
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angelbaby1 - yeah i'm the same - didn't have the time to freeze eggs - the urgency was too great to start treatment. Yeah the menopausal symptoms are great fun - and then you get the person who doesn't know your story and says "oh looks like a hot flush" - little do they know!! I'm glad I took it though cos it had definitely preserved my fertility - just needed a bit of fine tuning and i'll be planning on having baby news!!
This is a fab forum - lots of great stories of hope. 0 -
Hi Angelbaby,
wanted to be sure you knew I did NOT take zolodex. It was never presented as an option to me, probably because I was pregnant at the time. Given our exremely small focus group here I would say that zolodex might have just done the trick for you. Tess has great fertility hormone levels after taking it!!! My fertility hormone (AMH) is undetectable even though before chemo I got pregnant after only two months of trying. I say given that you were told that zolodex has a 90% success rate, you should assume best case scenario until it is proven otherwise
Let's just think that you will have a little baby to hold very soon after you decide to come off your tamoxifen! As for me, I'm just about as stubborn as they come so as long as I keep wanting a second baby I will very likely find a way to do it 0 -
Hi ladies
I get so confused with things. I don't think it helps that different doctors/consultants say different things... When I was offered the zolidex injections I asked what the % rating of it working was and they said they couldn't tell me as there was nothing to compare it with! It's nice hearing someone else say 90% as I decided to go with it. My thinking was that trying something was better than doing nothing.
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Sorry, Rutts. I was just agreeing with you saying 90%. I don't know much of anything about zolodex. But, my thought still stands; think for the best and don't worry unless you know there is a reason to
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I also thought that something was better than nothing. even if it only gave me a 50/50 chance why not take that if possible. but i'm sure the odds of it working were much higher, like i said, somewhere up around 90%. then again, so much of our cancer journeys are unique depending on our specific diagnosis, maybe this is too. age, for example, probably plays a big factor.
slg76 its quite possible that it wasnt offered due to u being pregnant. i think its also improtant not to assume we r going to have issues because of our treatment. some ppl try for years for a baby without cancer/chemo. i guess we just need to be patient and let it happen (easier said than done)! positive vibes!! great things happen to those who believe
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It's so nice to finally talk to others in the same situation. My family and friends from a breast cancer support group are amazing but they don't understand the baby side of it. I'm the youngest at the support group and the only 1 that had zolidex.
I now have a plan coming together holiday in 2 weeks time, then when I'm back I'm going to sort out acupuncture and talk to onc about having a baby break/come off tamoxifen.
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Hi Rutts,
I had zoladex 5 years. They told me it would prevent my ovarian function. I was with tamoxifen as well the full 5 years. It took me 8 months to have my period again and now this is my third month trying to conceive. I wish I can tell you soon that zoladex worked and that I´m pregnant.
Enjoy your holidays!
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Hi Arale
I only had zolidex for 6months during chemo. I have had signs that my periods will come back but still being on tamoxifen its not happening properly yet.
Sending loads of positive energy your way and I'm sure you will be telling us all soon that you are pregnant
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i was also only on zoladex during chemo, then nothing for 2 months while i waited to have/recovered from mastectomy due to DCIS they found during the lumpectomy which i had before chemo. maybe my periods came back because i had a bit of a break from medication rather than going straight from one to the other?? not sure, but they r very regular despite being 35 day cycles instead of 28.
It would b so great to hear from some of the people who posted on this thread early on to see how they r going a couple of years down the track. Bearcat, Sakura and anyone else who has already successfully had a baby post chemo (whether they took a break from tamoxifen or skipped it altogether), if u are checking in on the thread please let us know how u r getting on!
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yeah that would be super - all advise would be greatly appreciated from our success stories ladies
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Hello all,
Glad to offer my experience. I had Zolodex for 6 months during chemo. I refused Tamoxifen because I was already 36 and didn't want to wait to conceive. My oncologist thought I was foolish but accepted my decision. My son was born 2 years after my last Zolodex shot. He's now 22 months old and completely gorgeous!
I am 4 years out from diagnosis and totally fine. I would love a second child but I am 40 now and my eggs are frankly senior citizens, so the chances are slim.
I wish you all great success in the baby-creation journey. Feel free to ask me more details or PM me. I don't come to this site much now (am on parenting sites instead!) but will certainly check in to see posts on this thread.
Love
Rachel
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Thanks for sharing, Rachel. Congratulations on your son!! So happy to hear that you are healthy!! Did you doctor give you any statistics about recurrence rates with versus without tamoxifen? Does you doctor want you to bother with the tamoxifen now? I'm working on baby #2 now but I'm 36 and chemo did a number on my fertility. Time will tell...
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