Coming off tamoxifen early to have a baby
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i've been searching for ages for some stories like these. i've only been on tamoxifen for 4 months and have already made the decision to take a break after 2 years to try for a baby. the thing is, my oncologist said there'd b no point going back on it after such a long break. that doesnt make sense to me considering some ppl go on it for preventative measures if they r considered 'high risk' even if they havent actually had cancer. surely finishing it eventually (even if its not all in one go) is better than quitting altogether??
hoping this thread will b still going in another year and a half when i am almost ready to come off the tamoxifen. i would love for u all to keep us posted with how u r going, whether u went back on tamox or not. seems at this point that no one has regretted the decision to come off it (or not take it at all) and i hope i will feel the same.
sakura im also from australia and have had my treatment in melbourne.
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I've also been searching for a thread like this. I'm 32 (was diagnosed in July, BMX in August followed by radiation), and I'm on Tamox for 5 years (started in Sept). Prior to my diagnosis, we had tried for 6 years to get pregnant. I had multiple surgeries and was on various types of meds, but none of it worked. Now I feel like my main goal is no cancer recurrance, and I really want a break from doctor's offices and feeling like a science experiment, so I'm feeling at a loss. It seems like a lot of women on here had kids before their BC dx, but that's not my story.
We explored adoption, but at this point we don't feel like that it would be a good fit for us. So I guess we're kind of taking the stance that "if it's supposed to happen (getting pregnant), it will happen". I don't feel like it's a smart idea for me to go off Tamox to get pregnant since I couldn't for the last six years. But realizing that really sucks.
angelbaby1, I'll keep checking back on this thread, so hopefully we can keep it going.
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I read this thread a lot. I was diagnosed at 38 a week before my wedding. We did the fertility thing before lumpectomy, chemo and Herceptin and radiation. I only have one frozen good embryo. I decline tam after it was offered. It only gave another 5% to increase my odds of no recurrence. Plus I am young and want a good sex life and children.
My period cam back 3 months after chemo. It has been basically regular but does miss a cycle here and there. Each time I freak and think here comes menopause and then it returns.
My doc says I can try to have a baby in January because Herceptin should be out of my system. My last period was Oct. 15. 2012. I also think I ovulated that month. My period is late and now I fear menopause again. I have a lot of f****** fear since this bc shit hit the fan. I am scared to get pregnant, not to get pregnant, to try fertility treatments again, etc.... I will soon have to make decision.
You ladies inspire me and give me such hope! You all are so extraordinary! I am so grateful to know it is possible.
BTW, every time I feel warm, is this a f***** hot flash? I am pretty regular. Am I crazy?
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ladies as ye all say it's great to know that there are others in the same boat.
Soccergirl - i totally hear you. i'm 38 as well and we have been trying for the last 2 months. Finally got the hang of the ovulation tests and all that so staying really hopeful. Like yourself my periods came back but are quite long so it means less chances to concieve. Had all the tests any everything looks fine. Had ovaries surpressed during chemo and all has returned fine. Trying my damnedest to stay calm and believe it will happen. We deserve it after all the dramas that cancer can bring. Anyone trying any alternative therapies/herbs,etc to boost fertility??
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I have frozen embryos. Sometimes I think should I get a surrogate? The idea of more doc appointments makes me want to vomit. I am so confused. These decisions are so hard. Every few months my periods skips a month. It skipped this month and my mind goes to such a dark place. I feel hopeful because it came back 3 months after chemo but am still scared of possible damage. My sex drive has decreased, but that could be from anxiety, depression and the trauma. I feel hopeful from the posts on the site. I hope people continue to write about their experiences.
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Thanks for the encouraging words, I posted a while back and it helps to hear them.
So I decided NOT to ask my AMH levels or Ovarian follicle levels when I had these tested recently as part of a study on the impact of chemo on fertility. I am only 5 months out of chemo and I understand that this may not be a good time to judge the permanent situation of my fertility.
My docs have said I should take tamoxifen for just 3 years and then try to get pregnant at age 36 or 37. I dont think I will last that long, but still its better than 5 years. I just want to find out like statistically speaking, how much tamoxifen is actually helping me...but I am not getting into it now since I have no period yet...and so I understand that I would have no chance of pregnancy so there is no reason to go off Tamoxifen...
This is a great thread, we are all in a very challenging and stressful situation and there are not many people out there who understand what it is like to go through this. Thanks to everyone for posting here.
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soccergirl believe me, pregnancy doctor appointments are totally different from cancer ones. I wondered would I feel negative about going to the doctor but in fact it was so joyous to be there for a good happy reason rather than for cancer.
So don't let fear of more doctor apppointments be the reason you don't try for pregnancy!
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Sakura73 Thank you!!! I needed to hear that.
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After 5 years on tamox+zoladex my docs also told me to go on and try to conceive. But at this time I have to solve first another issue: after 6 months of stopping zoladex and 3 months of stopping tamox my period is still missing...
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It takes time for things to get back to normal. You still could get pregnant without having your period.
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I finally saw a fertility specialist, and they just told me today that the hormones tested so far look good. I still have a couple more tests to go, including testing BoomersDad to see if he is all ago at baby-making.
This decision is frightening, and one I still wrestle with. I know I'm increasing my odds at a distant reoccurence by not doing Tamoxifen, but it really is a quality of life versus quantity.
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Thanks soccergirl! I also agree with sakura73 on the fact that gyn and onc docs thinks the opposite in what concerns pregnancy. When I went to see my gyn she said absolutely NO to everything (pregnancy, IVF treatments, egg donation...). She also said that my own embryos have more than 80% possibilities of being damaged. It was devastating when I hear that.
But... A month later I went to see my onc and he said just the opposite to everything. He also said that embryo damage is not so big, and it is actually quite low if you've been on zoladex. Maybe you could try with your own embryos. At least it would be good to know how are your embryos and if you have the chance of using them so you could try with your frozen ones with less pressure (and then your chances to get pregnant would increase).0 -
My concern is that I have my period for 3 months and then it skips a month or two and then becomes regular again. Each time it skips I get so anxious I am in menopause, and then it returns.
I was an anxious person prior to BC and now my anxiety about my ability to have a baby is becoming more intense. I get the green light in December to start trying because the Herceptin will be out of my body. Now that I missed November's period, I feel like is it going to come back? Now I am losing sleep over this and need some support.
Is this normal to experience after chemo and Herceptin? What should I do?
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Soccer girl, I did acupuncture and my period ran like clockwork after that I did herceptin too and I truly think the acu helped regulate my hormones the place I went to was a holistic health center so we worked on diet yoga and motionsl counseling I think it all combined regulated my hormones so well! I'm 30 weeks with naturally conceived twins! We waited six months after herceptin to try n after two months preggo! It can happen ! Keep the faith!
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I meant to write emotional counseling
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Jpmercy: Thank you for your post. I will make an appointment to get acupuncture. I am so happy you were able to get pregnant so easily! It does give me hope. The fertility piece is just as stressful as dealing with the cancer. I appreciate the support.
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I'm just wondering with all the people "taking a break" if anyone has been told what i keep getting told by my doctors. my onc has told me previously and my surgeon told me today that if i were to take such a long break from tamoxifen to have a baby there would b no point going back on it. they both tell me that i could go on it later as a preventative for any new cancers but as far as treatment for this cancer goes once i take such a long break there's no going back. quite a few of u say that your oncologists made u promise to go back on tamox asap. has anyone been given the same advice as me? it has made my decision so much harder because i could deal with eventually finishing the tamox even if it was not all in one go. giving it up completely is a whole different story and makes me feel very vulnerable. if i stop for a baby i want to b here to watch it grow up.
jpmercy i c u had herceptin, but did u go on tamoxifen at all?
how is everyone feeling a few more months on about their choice to take a break/quit early/not take tamox at all??
argh decisions decisions!!
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I haven't logged in here in a while, thought I would send an update. Had my last period in September, my last chemo beginning of October. Almost finished radiation now, haven't started tamox yet. So starting to think again about the possibilities, putting getting my period back as #1 on my xmas wish list! I just want to know where my fertility is at so I can move on if bio pregnancy is not possible. But looks like from reading your stuff here there is no point in doing any tests when I don't have my period.
Best of luck to all you ladies that are trying to conceive after cancer!
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Arale - can take a bit of time for periods to come back after zolodex alright more so that tamox. I would recommend accupuncture - it's helping me to regulate my periods.
Boomersmom - great news that the fertility tests are going well - it's one less thing to worry about - fingers crossed now!!
Soccergirl - i'm experiencing the same issues with irregular periods but working on it with accu. My accu says I have had a blood deficiency for some time (poor diet - not enough hot foods) and it will take time to come right.
JPmercy - you have no idea how much hope messages like this give to those of us trying so thanks so much for sharing that
been tying with the idea of emotional councelling and now I think I will bite bullet!! love yoga as well - find it so relaxing.angelbaby1 - I hear you. I had herceptin for a year in 2008 and had tamox for 4 years finishing last may. I found the decision to come off difficult. My onc is very young and big into research and could not really find much justification to be on tamox for much longer and said coming off a year early had a minute risk. He said I could go back on in after having a baby but to be honest as soon as I have one I will be straight on no.2!!! I am so focused on looking after myself now and avoiding any kind of stress that a reoccurance is something that just does not compute in my mind anymore.
Velo - big congrats on finishing all your treatment!! Fantastic achievement. Hope santa comes early (via mother nature!!)
As for me we are 3 months into trying - still working on regulating the periods, all tests looking fine, trying my very best to stay calm and relaxed but it can be hard. Hopefully the season of good will will bring us tidings of great joy!!! xxx
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angelbaby: I passed on the Tam. I did aggressive chemo and Herceptin. The Tam would give me a 5% benefit but increase the risk for uterine cancer by 2%. Also, I knew I wanted my period back, not just for a baby but to feel like a young woman. I had a great sex life prior to bc and I am 13 months post chemo and I am feeling like me again. My periods returned 3 months post chemo but they do skip every so often. I am going to try acupuncture to regulate my period.
I appreciate all of the posts. I have hope
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Angel baby I skipped the tam it was a 1-2% benefit in my case so I declined I did BMX if I didn't I would have done tam but I also was not highly positive for er pr and my tu or was small.
Tess the yoga I did was called svaroopayoga I got a video on amazon it is also known as restorative yoga and the positions are made to heal your body and encourage relaxation. I did it one on one with my acupuncturist but could never remember the poses so I got the video if you can't find a svaroopayoga DVD look for restorative yoga!
Also just have to say pregnancy is funny after BMX I look so disproportioned my belly is enormous w twins n my foobs are so small! I don't miss the boob pain though, I'm starting to get sad about not nursing but just keep thinking I'm going to have two little miracle babes and that is what matters! I'll keep you all posted I feel like another six -seven weeks the girls will be here starting modified bed rest today and done with work for the next year and a half! Jen0 -
angelbaby I too gave Tamoxifen a miss since I wanted to conceive. After chemo its benefit to me was limited. I can honestly say I rarely worry about my decision. From my chemo group, of the 2 women who have progressed to Stage 4 so far one was on Tamox and one wasn't. There are no guarantees in our world, we have to make our choices and hope for the best. I wanted a baby and I have one, and I will never regret him even if I do have a recurrence or progression.
jpmercy am so excited for you! Do keep us posted.
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Sorry everyone for my long silence. Getting online is more of a challenge these days...Claire - thanks so much for your kind words. I'm so glad that life has got better to you. It's such a tough thing to go through and all we can do is make the best of things.Soccergirl - your body has been through a lot, I'm sure your period will settle down. Mine was all over the place for a while. With frozen embryos you have a great chance of success - a friend of mine has just conceived after having breast cancer twice using frozen embryos in her 40s.Tessmerelda - wonderful news that your tests have come back with good results. Good luck! I did acupuncture, ate healthily, reduced my alcohol intake and exercised every day. I'm not sure how much the acupuncture helped, but it certainly was very relaxing and that can only be a good thing. I also went on a detox weekend a few months before I had my fertility treatment, I think that was really helpful in getting my head in gear and focusing on being healthy to have a child rather than being healthy to beat cancer.Cucho - it's hellish waiting until you can try and get pregnant isn't it? I do think it took my body about that long to recover from the treatment, though so part of that waiting puts you in the best position to conceive if you see what I mean.BoomersMom - it is such a hard decision to make at the time. I remember feeling so torn and angry. I hope you have good people to talk to. I found a series of counselling sessions really useful to help me decide.Arale - I conceived using my own eggs at the age of 40 after chemotherapy. My son is gorgeous, and - so far - very normal. I'm not sure where your doctor gets her data from as far as I know there are no stats on people in our position!Jen - how are you? 30 weeks! Not long now. All the best with it all.Angelbaby - With regards to the decision to come off tam. - I could never regret it. My son is a little darling and I love him dearly.Rachel - nice to see you're still posting. Hope little Arthur is well.Happy holidays all, I hope that 2013 brings you everything you are wishing for.HugsLisa x0
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Hope everyones new year is off to a positive, healthy start
Bearcat, how long were u on the tamox for before u stopped to try for a baby? and r u back on it?
and how is everyone elses pregnancies/babies going?
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Hi Angelbaby, I was on it for 1.5 years then had a break of about 1.5 years to have a baby. I'm now back on it for the remaining 3.5 years. I had to wait 3 months for it to clear out of my system before I could try and get pregnant.
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Hi¡ Happy New Year to everyone¡ I hope you are doing well and working hard on your new babies
As for me, I don´t have too much news. I went to see to a new doctor, and he was definitively positive towards a future pregnancy, but ... my hormones are still very low. I have a new appointment for an anlysis this friday, so we´ll see how are my hormones going ... It´s been 8 months since I went off zoladex and 4 months since tamoxifen and still got no period and sometimes I feel a little bit anxious.
I´m seriously considering going to acupuncture and I´m taking primrose oil pills, so we´ll see ...
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Hello!
I hope everyone had a great Christmas and New Year. May 2013 be good to us all!
So, 2013 is the year that I can start thinking about taking a 2 year break from Tamoxifen. We've spoken loads about fertility tests straight after chemo and I think we all agrees that none of them are accurate. How about a year after chemo, but while taking Tamoxifen? Will Tamoxifen distort the results? Ideally I'd like to find out if I'm fertile or not before wrestling with the decision (and visiting different oncologists for their opinions etc) as to whether to stop Tamoxifen. But that might not be possible, I guess.
Thanks for your help girls.
In the meantime, I get my new boobs in 2 weeks. I can't wait - although having read the implant exchange thread, I'm a bit worried that they might not meet my (very high!) expectations. I so desperately want some body confidence back.
Hope the mum's are all doing well and the rest of you are coping with the wait-and-seeing...!
x
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Happy new year to all!! Hope everyone had a relaxing holiday.
No major news here - had such a relaxing break so feeling very positive about the year ahead and my one and only goal for the year
Arale - I would defo recommend accupuncture. Though it hasn't shortened by long periods it has certainly made them regular.
Skibunny - I had the same dilemma. I wanted to know how my fertility was BEFORE I came off tamox but my onc said it dat I needed to get tamox out of my system first to know for sure. Having said that my period was back so I felt fairly confident all would be ok and so far tests are all very positive and i'm ovulating. It is a tough time deciding but once I did I was happy with it and have no regrets.
So i'm continuing on accupuncture and lots of vitamins and minerals, healthy eating and moderate exercise every day. My accupuncturist suggested I get my thyroid checked as tyroid issues can prevent pregnancy and can be eaisly resolved. So we will see if that's and issue.
Fingers crossed ladies xxx lets bring on that baby boom!!
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Ok ladies, I had acupuncture and my period is acting more normal!!!! How often should I go ?
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So my husband and I have been trying to conceive for a year now. We fell pregnant last year but I miscarried and we have been trying ever since. I am going to see my onc next month but does anyone know if they can refer me to the fertility center or do test to see what's up? I got my periods back and I'm on a regular 26-30 day cycle so I'm pretty sure I'm ovulating!
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