Coming off tamoxifen early to have a baby
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Yes, he did give me stats. My recurrence risk over 5 years, after doing chemo, was 18% without Tamoxifen and 12% with Tamoxifen. In other words, it reduced my risk in real terms by 6% (relative terms 33%). For me, such a small reduction in risk was too high a price to pay for losing the chance to be a mother (I would have been nearly 42 when the 5 years ended). I still would have had a 12% chance of recurrence and no baby.
I did wonder whether he would suggest taking Tamoxifen after Arthur was born, but when I went to see him soon after the birth (I only see him once a year) he didn't mention it.
Are you seeing a naturopath? I had great support from one and am sure the supplements she gave me helped my fertility remain. In particular since you have had radiation you should be taking high dose folate as radiation affects our bodies' ability to retain it.
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Thank you Rachel for the update. glad to hear all is going so well!
Im also from australia. had all my treatment in melbourne (although im from country vic so has been a bit of travelling). The difference with tamox for me is also small (around 4%) which is why im happy with my decision to stop after 2 years. they say the first couple of years are most important, so maybe an extra 2% chance if i come off early. i have decided that given those odds, if i am unlucky enough to get a recurrence it will probably happen regardless of the 2 or 5 years. but that wont happen! im staying positive and living a healthy lifestyle so i can have my baby and put all this cancer stuff behind me.
Good luck with a 2nd pregnancy. never say never. positive vibes
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Hello, I just wanted to share that I am five weeks pregnant!
I was diagnosed at 31 stage 3b. I did chemo, rads, herceptin and 9 months of Tamoxifen only. I am 34 now, almost 3 years out from diagnosis. Anyway the reason why i stopped Tam was because it caused me depression and bone pain. My periods stopped for a year then came back a bit irregular here and there.
We werent actively trying for a baby but prior to chemo I still wanted to have another baby down the road. I was always angry because I wasnt able to save my eggs, starting chemo asap was the priority. Afterwards my onc strictly advised against getting preggers because I didnt finish the five years for Tam. She told me that there is literature out there that pregnancy is safe after BC but because I didnt finish Tamoxifen, its just unknown.
Well here I am pregnant and happy. Im not gonna live my life in fear. Three years ago the whisper of death was in my body. Today I carry life and I am so happy.
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Congratulations Letlet!!! What a wonderful story! You just brought a smile to my face
We have a similar cancer journey. I was 33 when dx with stage 3 and am also 3 years out from dx. I did similar treatment (but Her2-) followed up with 18 months of tamoxifen. I'm trying my very best to have my second child now so my little girl can have a sibling. I couldn't save eggs cuz I was pregnant when diagnosed.
It is a bit relieving to hear that other people are making the decision to come off tamoxifen and have children. Every once in a while I wonder if I'm being a bit reckless by doing it. But, I also choose not to live in fear. Cancer already took enough away from me.
I hope you have a healthy, happy, and easy pregnancy. Please keep us up to date on how you are doing!
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Rachel---thanks for the update! The stats you were given sound consistent with what I was told and read. I am very faithful with all my scans and self checks and that is all I'm willing to do. So good to know that other women also think that having a child is more important than just a bit more protection from a recurrence. I also remind myself that I could certainly have a recurrence on the tamoxifen too.
Take good care of yourself and let us know how things are going.
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Congratulations Letlet!!! Fantastic to hear yet another success story!!! So inspiring. I'm 38 but all results are coming back well so i'm on CLomid at the moment and hoping for this to do the trick as the only (possible) issue I may have is a slightly blocked tube. Watch this space!!
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I'm so glad to have found this group. I was wondering if there was anyone out there dealing with the same issues and here you guys are. I'm 38 and was diagnosed with ER+ breast cancer last month. I've had a lumpectomy and now my oncologist has suggested chemo, tamoxifen and radiation to me. When I asked about trying to have a child (my husband and I had just started trying to conceive about 8 months ago and have no children yet), she basically told me it was not recommended. She advised that the increase in estrogen could cause the cancer to return. My heart broke. Today I'm looking online and find a major study from 2012 that states there there is no increase in cancer recurrence for ER+ women who get pregnant after treatment. I was shocked! I've sent this to my oncologist and asked for a referral to a fertility doctor to discuss it. I'm not sure if she is just playing it safe or if she wasn't aware of this study or what. I feel like I need all the information possible to make a decision that could impact my fertility forever. Seeing the stories here of women who have conceived after treatment has given me some hope, which I desperately need right now.
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Fullst, my onc objected to me getting pregnant because I didnt finish the 5 years of tamoxifen. If I did, she would have no objections. I also read that they recommend not trying for a baby for the first 2 years after treatment just because they said that this is the time that the cancer would most likely recurr (first two years) and they dont recommend getting pregnant because you might have to get chemo again and that would be a problem while pregnant.
I stopped the Tamoxifen because of the side effects, the pregnancy was a complete and utter surprise! Don't lose hope fullst! Is egg preservation an option for you?
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Welcome, Fullst. I'm sorry to hear about your cancer but I'm so glad you found us!! Good for you for doing your own research and making your own decisions. I think you will find lots of great info here as well as a lot of support no matter what you decide in the end. Each situation is so unique and we each have to make a decision that is right for our life. My onc is fully supportive of me coming off tamoxifen after 18 months as long as I promised to go back on after I finished having children.
I agree with all of what letlet said above. I will also ask...have you looked into egg/embryo preservation? Where do you live? I have some resources in the states about fertility preservation.
My reproductive endocrinolost (my fertility doc) gave me this review about a year ago. If anyone wants the full article just send me a message with your email addres in it. I'll work on making a list of a few other good articles that I have.
Breast Cancer Res Treat (2011) 129:309–317
DOI 10.1007/s10549-011-1643-7
Pregnancy after breast cancer: if you wish, ma’am
Olivia Pagani • Ann Partridge • Larissa Korde •
Sunil Badve • John Bartlett • Kathy Albain •
Richard Gelber • Aron Goldhirsch
Abstract A growing number of young breast cancer
survivors consider reproductive health issues, including
subsequent fertility and pregnancy, of great importance, but
many questions regarding safety remain unanswered. We
conducted a comprehensive literature search and review of
published articles, control-matched, population-based, and
co-operative group reports that addressed various aspects of
pregnancy after breast cancer (patients’ expectations, fertility
damage, assessment and preservation, maternal and
fetal outcome, breast feeding). Overall, available data support
pregnancy and breast feeding after breast cancer as safe
and feasible for women at low risk of recurrence. This
retrospective and population-based evidence is, however,
frequently incomplete; usually not representative of the
entire population, it can be biased by patients’ related effects
or underpowered and is often not controlled for biological
factors and risk determinants in the statistical model used.
Before making any definitive assumption on this delicate
and fundamental aspect of a woman’s life after breast cancer,
we should demonstrate without any reasonable doubt
that the scattered information available today is scientifically
sound. The Breast International Group and North
American Breast Cancer Group are planning a global......
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Here is a link from a website called "Living Beyong Breast Cancer" and the summary of the article about breast cancer/fertility preservation/pregnancy
March 2011 Ask the Expert: Fertility and Pregnancy
During the month of March 2011, Living Beyond Breast Cancer expert Elizabeth S. Ginsburg, MD, answered your questions about how breast cancer treatments can affect your fertility and family planning, including how to coordinate treatment with your oncologist, methods of preserving fertility and timing treatments; the long-term effects of chemotherapy and how doctors can determine its impact on fertility; and post-treatment pregnancy and adoption options.
Hope this helps! xo Sara
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fullst your oncologist does not know what she is talking about! There is NO EVIDENCE that pregnancy increases risk of recurrence. Estrogen goes up in pregnancy but so does progesterone which is protective. Breast feeding is known to be protective too. As more of us have kids post-cancer postive evidence is actually growing that pregnancy is not risky for us.
If preserving fertility and having a child is important to you, you need doctors who respect that as being a priority for you. You need Zolodex injections during chemo to help preserve fertility, you need proper stats on how much benefit Tamox would be to you post chemo (refer my posts on this thread about the reasons I refused Tamox) so you can decide whether to take it.
Being cancer-free is not an end in itself. We want to be cancer free so we can live our lives the way we want to live them. For some of us, that means having children. And the chance to have children is valuable and we may be willing to trade away some forms of cancer-protection in return for the opportunity to conceive.
Sorry to sound so forceful but I hate the way some doctors are so focussed on cancer that they forget we are PEOPLE with LIVES not just bodies.
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Thank you guys so much for following up. I'm in the Los Angeles area, where there are a ton of infertility specialists and clinics. I won't be making any moves until I am sure that I have done all I can to preserve my fertility. I've already decided that I'm doing radiation but I was told that this only gives me (statistically) a 67% protection against recurrence. Taking hormone therapy gives me an additional 10% protection and how helpful chemo will be to me is in the process of being determined (waiting on a test that should evaluate my unique cancers response to chemo). Frankly, I'm more willing to embrace hormone therapy and chemo if I know that I can resume the life that I had pre-cancer again sometime in the future, which involved trying to get pregnant. I realize that I probably need a second opinion and, at the very least, to speak with a fertility specialist. Luckily, my husband and I do have some money saved and my parents have offered to assist me with the cost of fertility treatments. I'm going to take the information I found online and what you guys have brought up and see what the fertility specialists have to say. I'm not going to give up on this until ALL options have been discussed.
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fullst - our profiles are very alike
you are not the first girl on this site to tell us that their onc would not agree to pregnancy and if i'm not mistaken I do believe that the majority have been female oncs. My onc is male and is the same age as us both (38) with 2 small kids. Like you, I have no children. I am 5 years post BC and have been trying for 7 cycles and have just commenced fertility treatment using CLomid. I was also ER+, had chemo, radiation, hormone therapy and tamox.
I agree fully with what the other girls have said. I cannot see any issue with having chemo, radiation, hormone therapy and tamox for 1-2 years. You will be 40 then so can still try. And as already said have the Zolodex injections to protect your ovaries. I'm really glad I had those injections. There are no studies out there to say that pregnancy can have ANY risk to cause reoccurrence and you still have the added bonus of going back on tamox after babies. Definitely get a 2nd opinion. Keep linked in with us all. The stories here are inspiring and as everyone will tell you here we have so little other resources to go by -practically no data to reference - but we have each other to talk to and to share with.0 -
Congratulations Letlet!!! Love the good news stories - it gives us all hope.
Fullst, it's so difficult as even highly respected oncologists seem to vary in their opinions. I'd definitely get a second opinion. My onc is very pessimistic and errs on the side of caution, but my second opinion onc is all for pregnancy following a diagnosis. I'm at high risk of a recurrence, so he has recommended that I wait 3 years.
More good news stories please girls!
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working on good news!! first round of CLomid no good so just started round 2 - fingers crossed that this IS the one!!!
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My fingers and toes are crossed for you, Tessmerelda!
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Everything crossed TessmereldaC! X
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Congratulations Letlet!! love the good news stories. gives us all hope.
Fullst sorry about the circumstances but welcome to the thread. This has helped me so much. i have experienced my lowest of lows fearing that i might not b able to have another baby. another thing cancer had taken from me. but i did more research (other than what my onc had told me) and found this thread and i again became hopeful. the experiences, advice and opinions the other girls were given by their oncs helped me with what questions to ask my own onc, and since discussing it in depth he has given me the green light to try for a baby after 2 years on tamox (1 down, 1 to go!)
Good luck to all with your decisions, with your conception attempts, and for those lucky enough, with your pregnancies
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Hi Skibunny and Anglebaby! Nice to hear from you!
How are you doing Fullst? Making any progress with treatment?
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Hi guys. I'm so glad to keep hearing these stories of women who were able to "move on" and continue with their lives as normal, which includes having kids. I asked my doctor about the study showing that there is no greater risk to women who get pregnant after treatment and she basically stated that she is not convinced that the evidence is conclusive. Not sure what to make of that but it's something to keep discussing. In the meantime, I've made an appt with a fertility specialist to get a second opinion on the fertility issues and I'll hopefully be able to get some fertility testing done. Before my diagnosis I had requested fertility testing, as my husband and I had been trying to get pregnant for about 7 months and I was told to keep trying and fertility testing would be done after a year of trying. So, we will see. I've got an appt next week to find out about further treatment options - chemo, hormone therapy, radiation, etc. I'm just trying to get as much info as I can so I can make a decision about how to proceed. It's stressful but I've already decided that I won't make any significant decisions until I have all the facts.
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Girls,
I am so excited for all of you ..
I am on the same boat and would really like to hear your advices. I was 36 at diagnosis, before chemo I tried to preserve my fertility but I have been told that my FSH hormone is already high (26). Now, after chemo and radiation ( I am still doing Herceptin), I really wonder if it is still possible for me to have another child. I know that I have to wait for a year or more to finish with Herceptin and give myself a break after Herceptin but I am very discouraged by my high FSH. I also haven’t had my cycle back..anyone have been on my situation and succeeded in having a baby?
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Hi Abby,
Well, I'm not a baby success story quite yet but I plan to be! I was 33 at dx and could not do fertility preservation. I was pregnant at dx so was not having cycles. I finished treatment including 18 months of tamoxifen. During that whole time I had no cycles. 7 months later my cycles returned, with the help of accupuncture. My FSH can't be measured accurately because my estrogen is so high. The excess estrogen blocks the production of FSH. I'm sure my FSH would otherwise be sky high. My AMH (ovarian reserve) is nondetectable. Some fertility doctors would not work with me but my doctor says she has seen plenty of people with numbers like mine get pregnant. I am low risk for recurrence and my onc and RE are in full support of me having more children. I would like to have a second child so my little girl has a sibling. I'll keep you posted. I'm just starting my third month of fertility treatments. Glad you are looking into your options and thinking ahead to what you want to do when you finish treatment.
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Hi ladies!
Im just checking in. I was diagnosed in 2009, had TC x 4, lumpectomy, rads & 3 years of tamoxifen. Im off tamoxifen since January with my oncologists approval. Waited the 3 months before we started actively trying to conceive so really only trying for the past 3 months. Early days yet! Im trying to do everything 'right', i.e. eating well & exercising regularly so hopefully it will be a success story but time will tell!
Congrats Letlet on the fantastic news, SO delighted for you!
Thanks sig76 for posting the helpful links & info, make for interesting reading
Tessmerelda: how is the clomid going? Do you notice any side effects from it?
Happy baby making everyone!
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Hey treadsoftly,
good to hear from you again. We are trying 9 months but my cycles were long so it amounts to 7 cycles. So now i'm on round 2 CLomid. I don't really notice any side effects...possibly head aches alright but they pass within a day. Has your onc said anything about going cack on tamox later? Mine wants me to go back on after even thought I did 4 years tamox.0 -
Hey treadsoftly,
good to hear from you again. We are trying 9 months but my cycles were long so it amounts to 7 cycles. So now i'm on round 2 CLomid. I don't really notice any side effects...possibly head aches alright but they pass within a day. Has your onc said anything about going cack on tamox later? Mine wants me to go back on after even thought I did 4 years tamox. Keep us posted on any updates and obviously I will be doing the same. good luck!!! xx0 -
Hi girls, how are you? This is my baby-making cycle number 4, and it is going to be negative again, because I´m almost sure that I have not ovulated this month. Tomorrow I have an appointment with my gyn, and I don´t know if we should start talking about clomid, or femara, or whatever. Should I start or should I wait??
xx girls!!
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Hi Arale, Did you use the ovulation sticks? I found the ovulation monitor didn't work for me so I used the individual sticks which worked but I was ovulating much later than normal (instead of 12 approx. days it was 21 approx. days). Worth trying the sticks the next cycle I would suggest. I will be 39 this year (not sure what age you are) and my onc put me on CLomid after 7 cycles. I think he would have left it go for another 3 months but I pushed him on it. On my 2nd cycle of it. Have you had your AMH test done? I would get that done if you haven't. Gives you a good idea where your fertility is at. also have you tried acupuncture? My cycles were right up to 50 days but I got it down to around 38 with acupuncture. keep us posted - at least 5 of us on this thread are trying right now so it's all so exciting!!! good luck!!! x can't wait for us all to flood this thread with good news!!!:)
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Hi girls! So ... after the appointment with my gyn today, the most remarkable fact for me is that I don´t know nothing about my body. I thought I hadn´t ovulated this month, but I´m ovulating right now! I clearly saw the follicle of 19x20 mm on my left ovary in the ultrasound. I´ve using the ovulation sticks, but I´m not sure if they work for me, because sometimes I see the eggwhite mucus and the LH positive on different days. LH was negative early this morning. If I see a negative again tomorrow then I´ll definitely throw them away.
TessmereldaC, my gyn also told me to have several hormones done in my next cycle. He began to talk about the risk of low ovarian reserve (I´m 35!) because of the chemotherapy rounds. To my surprise he didn´t mention clomid or femara, and he began to talk about eggdonation. As I have the BRCA1 mutation, he told me that I would be a way to avoid passing this gene to my future children. I guess I have to think about it.
xx
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Hi ladies
I'm back from my hols all relaxed and refreshed. I now need to sort out appointments with onc to talk about having a 'baby break' from tamoxifen!?! Quite a scary thought but its something I have to do.
Just had a quick catch up with posts Ive missed while away. Glad to see everyone is ok xx0 -
Welcome back, Rutts. Glad you had a nice vacation. When is your onc apt? I'm sure we are all curious to hear what s/he has to say.
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