Coming off tamoxifen early to have a baby
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Cloudberry and slg76 - I've been on tamoxifen for 20months now and have had a few very weak periods but no sign if any merging got the last 6 months (apart from the stomach pains) really hope it does all go back to normal when I come off in march. Thank you all so much for the wonderful advice. It really has helped being part of this forum
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There are too many posts to read through so I thought I'd try by asking if there is anyone in a similar situation to me...
I am 32 years old and have been on Tamoxifen for 3 full years. My husband and I are weighing the risks and benefits of taking a break from the Tamoxifen now to try and get pregnant as my AMH levels have dropped considerably in the last six months from .92 to .59. My oncologist said it would be acceptable to take a break but just wondering if anyone else has debated this issue or if anyone has been successful in conceiving with such low feritlity levels? How long did it take and did you conceive naturally?
We were only married nine months when I was disgnosed so having children was not in our plans just yet as newlyweds. But now I at least want the chance at having biological children. It feels like it's now or never. Below is my history, as you can see it's been a long 4 years. Anyone who can give some insight would be greatly appreciated!
Diagnosed 10/2009
Chemo (ACTH), lumpectomy, radiation 11/2009 - 12/2010
Second diagnosis 3/2010
Double mastectomy, tissue expanders, Xeloda & Tykerb 3/2011 - 9/2011
Reconstruction (implants) 12/2011
Tamoxifen 8/2010 - present
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Hi k2009 im so sorry youve not been having a very good time the last 4 years. I've been on tamoxifen for 20 months and my plan is to have a 'baby break' next year. The plan is to come off tamoxifen in march and this is all with the agreeance of my onc. He told me that he would like me to do a minimum of 2 years (it'll be 2 years in January) and possibly go back on tamoxifen after. I don't know what my hormone levels are as I've not had any tests.... Maybe I should though?!?
I hope you and your husband find the answers your looking for but all I would say is do what feels right for you.... xx0 -
Hi K2009. I'm glad you found us!
I had chemo, lumpectomy, rads and never had positive nodes. I took tamoxifen for 18 months and then took a baby break. I was pregnant when I was dx and now have a 3 year old. We really want to have a sibling for her and wanted to do it before we were "too old". I am 37 and hubby is 42. My onc was totally fine with this. She wanted me to take tamoxifen for at least a year and made me promise to go back on it after baby/breast feeding. She was actually fine with us having two more children if that's what we want. My periods took 7 months to return which I was told was a little faster than average (I hadn't had one at all during treatment I think because I was pregnant when I started). We tried on our own for about 9 months with no luck. I did three cycles of letrizole which is similar to clomid also with no luck. Last month I was taking a break to let a cyst on my ovary dissolve and I got pregnant naturally! I'm not sure If I would have concieved naturally or not had I not done the fertility meds. My doctor said she has seen women get pregnant a number of times just after stopping fertility meds; maybe it is a jump start for our bodies? Oh, and my AMH was undectectable after treatment!
Many of the women here, and I, feel that I don't just want to be alive after breast cancer, I want to live a happy life. If that means having children then I'm willing to try for that as long as there isn't a significant risk to my own health. I've heard many doctors agree that taking a break after 2 years is reasonable. There is no clear cut answer or research to give us a lot of direction. You just have to listen to your heart and do what feels right. To me, it sounds right that you are thinking about this now since your fertility window may be getting smaller. This is such a complex, hard decision.
If you have time to scroll through the last year or so of these posts you will find several women in your same situation that talk about thier decision.
Wishing you the best,
Sara
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Thanks to those that posted their periods are irregular with tamoxifen.. good to know! k2009 - have you consulted with a fertility specialist to see if they have an opinion on your chances of conceiving? Probably good to check everything else is AOK (hubby has good sperm etc.) before coming off the tamoxifen. But your onc being on board is a good sign!
I have no idea what those numbers mean - have recently had my AMH tested but do not have any results back yet. But yes it seems with dropping numbers you want to try sooner than later. Good luck!
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Interesting to read your story k2009 and hopefully you have seen from this thread that you are not on your own! I don't know if it helps but, having received conflicting advice, I am planning to break from Tamoxifen after 3 years. (I'm a bit older than you and have no idea about my fertility stats.) My consultant advised me to stay on it for five years but would compromise at 3 years. My oncologist is very relaxed about it and says 18-24 months - ie: feel free to go for it now.
My view is that I don't want to be reckless and jeopardise my health, but at the same time I don't want to miss my opportunity to have children for what is ultimately (as the docs themselves admit) an unknown quantity! I agree with Rutts and sig76 and I am sure you will do what feels right for you. Without the hard facts we need, perhaps we have to start trusting our feminine instinct a bit more?!
Rutts - My oncologist is unconcerned at how erratic my periods are as Tamoxifen messes with your cycle. I think 'at last, they're back' and then nothing for months on end... I'm sure you'll get back on track when you take a break and would try not to worry about it for now. Easily said I know ;-)
xxx
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Welcome K2009!! Sorry to hear of the 4 years you have had. yes it is a tough decision to decide whether to come off Tamox or not. My onc worked in statistics for me as he knows that's my kind of thing and he basically said that I was increasing my chance of reoccurrence by 2% which seemed low for me. Plus I had to factor in my age (then 37, now 38). But in general when you go through the posts in here there does not appear to be too many who were firstly not advised to take a break and secondly there are very few who were told that 18 months to 2 years is the minimum before a break. But more and more are being advised to go back on Tamox after pregnancy and breastfeeding. Were you on Zolodex to supress your ovaries during chemo? Have you done other tests such as checking tubes? Has your hubbie done sperm test? All stuff you could do now while thinking. I think if you truly want kids then it is worth serious consideration. As Sig76 we want to LIVE after our experiences - and that means doing all the things we wanted to do and move beyond our journeys. Best of luck and keep in touch xx
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Wow, thank you all for such quick responses! I’ve been contemplating this for ages with no one to talk to who truly understands (besides my husband) and here you all are!
My name is Karen by the way.Rutts – I am a type A need to know kind of person and decided to go through with some hormone testing so I could at least have an idea where I stood. Our plan was always to complete the five years then decide if we want to try. This way if the tests came back I was infertile I could accept it and move on and we could look at adoption. If the tests came back with good news then I could have something to look forward to. But I knew that if we had waited the five years without any baseline info, and then couldn’t get pregnant, I knew I’d have felt like we missed out or should have done something sooner. Although the results we got from testing aren’t fabulous, there is still hope and I am thankful I know now.
Sara – Congratulations!! That is wonderful news! Your story is so uplifting and makes me hopeful
I also had negative nodes but my period has remained regular the last 3 years I‘ve been on Tam. Maybe this is a good sign? I completely agree, we all deserve to live life to the fullest and we shouldn’t let cancer take anything else away from us. With time I know my husband and I will come to a decision that feels right for both of us, like you said, as long as it doesn’t prove to be a risk to my own health. I took some time last night and read through the posts from the last year and it sounds like most people have come to the same conclusion that taking a baby break and a possible pregnancy is worth it! I’m so happy for you.Velo – I am seeing a fertility specialist in addition to my onc. She has given me hope and now I know that there are more options out there for women like us. Before I couldn’t find a doctor who was knowledgeable with breast cancer AND fertility at the same time.
Cloudberry – We definitely should trust our instincts more, I agree! The fact that we are all still here to tell our stories and support each other proves we’ve made good decisions about our health so far
Tessmerelda – Statistics are hard for me to rely on because what were the odds a healthy 28 year old woman, no family hx, non-smoker, only drank socially, ate pretty healthy would get cancer….and yet I did. But I agree, 2% does seem low when you think of what you can get in return by having a baby. I was not on Zolodex, we briefly discussed it with my onc when I started chemo but my cancer was very aggressive so we decided to just start with treatments right away and leave the “baby decisions” to when I was healthy again. I will definitely go back on Tam eventually too.
Thank you all for your encouragement! I’m so glad I found this group! xo
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Hi Karen,
I also could not do fertility preservation because my cancer was very aggressive and I was pregnant so we couldn't ask my ovaries to do anything else
The chemo damaged my fertility a lot but not enough to keep me from getting pregnant! Something to keep in mind...I was told that I could not do an AMH test until the tamoxifen was out of my system so we actually couldn't really find out if I was still fertile until after I came off the medication. 0 -
Hi Karen,
Some similarities in our stories. I was 29 at diagnosis, did chemo (TC X 4), lumpectomy, rads & completed 3 years of tamoxifen. After discussion with my oncologist, came off it in Jan to try to conceive & happily it happened naturally! I'm just 6+ weeks so early days yet! I didn't get AMH levels checked at any stage but I had regular periods on tamoxifen & hubbie & I ate healthily, exercised regularly etc. Completely agree with the other fantastic ladies on this thread who say life is for living after a BC diagnosis. Best of luck, xx0 -
Sarah - I'm meeting with my fertility specialist next week and will definitely ask about the AMH while on tam. Maybe it would be beneficial to have it retested. My hubby also decided to have himself "evaluated" so we have all the info we can get to start!
Treadsoftly - congrats!! Another wonderful story and I'm very happy for you optimistic that we have very similar stories and you were successful. 0 -
K2009: I understand your situation. I am 36 and was diagnosed in May. I have a 3 yr old son but I was planning to have a second one when diagnosed. I am ER+PR+ and has 24 nodes removed, 4 with cancer cells.
My onc told me yesterday that when I finish my chemo by the end of the year (I have to start the 12 taxotere session and in 5 or 6 weeks my radiation) I have to start tamoxifen. He said that since I am hormone positive I have greater risk of recurrence so at least 5 yrs, but he thought 10 would be better. That is not in my plans and I told him. I told him that I don’t want only to live but to live a happy life as slg76 said, which means doing what I was planning to do. I told him that I have read studies and he made the difference between the treatment and the risks (¿?)
Anyway, on one hand I want to have children and on the other are the side effects of the tamoxifen which I just don’t know if I want to get. K2009: So, did your onc said anything about the risks for being hormone positive and how long should you take tamoxifen?
How is everyone coping with tamoxifen? I know I am not there yet but will soon. I will have this time hormone test … My onc said that probably my period will stop soon, and that it would be better that it stops since, again, I am hormone positive… any comments?
One more question: pregnancy and lymphedema… with 24 nodes removed, does anyone knows if it increases to get lymphedema now and during pregnancy?
Slg76: did you had your treatment during pregnancy? I know that most of my questions you have already answered them
I am thinking about “our” future cyber nephews or nieces!!
Take care!
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Hi everybody. How is everyone doing?
I am seven weeks pregnant now...I think. I had an ultrasound yesterday and unfortunately it didn't look as good as we had hoped. There isn't as much development as there should be to match my dates and my HCG level (still normal hormone levels for 7 wk). We just have to wait a week and look again. Hoping that my little bean is just a little slow to grow. I'm slow to do everything so maybe my baby already takes after my low energy
Cucli-
Yes, I did do treatment while pregnant. I did all my AC chemo in my third trimester. I had Emily and then went back for taxotere, surgery, radiation. Thankfully, the chemo didn't seem to affect Emily at all except maybe slowing her growth a bit. She was still 7 pounds so no worry about that.
Doctors seem to be split between recommending 5 years or 10 years of tamoxifen. I suppose it could depend on how strongly hormone receptive your cancer is. I think it also has a lot to do with how big a risk they think you have for recurrence. Side effects may not be as bad as you think. I was lucky. I had some hot flushes and moodiness but it all settled down after a few months and then I didn't have any noticeable effects anymore.
Your period may or may not stop. Not everyone's does. I didn't have mine from the time I got pregnant with Emily until 7 months after I came off tamoxifen...so two and a half years.
I'm glad you are thinking ahead. These decisions take time to make. Lots of pros and cons and things to consider.
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sig76 - sending out lots of love and hugs to you and praying hard for some super news for ye next week x thinking of ye xxxx
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Hi slg76,
Were your periods regular? Even if your periods were only a few days longer it makes a huge difference in the embryon growth. According to my last period I should be 9 weeks pregnant, but after my last ultrasound they told me that I´m 7+5 weeks now. I think embryon grows around 1 mm (0,040 inches) per day, so only a few days makes a huge difference.
xx
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Thank you, Tess, for all your support!
Arale, my cycles are between 27 and 32 days. The more I read the more I think my doctor might be jumping to conclusions. It's good to hear that you were more than a week off on your dates. Maybe I did ovulate later than I thought. It is possible that I had my conception date early. That would just mean that I got a really early positive hpt and my hcg is running high; that is certainly a possibility and not a problem. I'm really hoping that my little bean is growing away in there and we will see a heartbeat next week.
Glad to hear that your baby is growing and healthy. How are our other new babies doing?
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slg76: I am praying for you and your little bean
Be patient... I know it is hard, we all know patience is... mmm hard to "apply". My personality is not a patient one... I am quite intense so that is why I know it is very hard but also very important in a situation like this. I believe so much in my guardian angel and always asking for help! I also know that "maths" are not that exact, I mean when you match dates with hcg levels... we are all different since our conception, so your little bean may just be having a different growth When you say "how strongly hormone receptive your cancer is" you mean what the results say? My onc highly recommend 10 yrs because of recurrence since my cancer had nodes taken... but he was not checking any results... I know he is good, but I think he is not in my "frequency" as a I say...
A big hug for you and all our future mommys... I love these posts... It gives me so much hope
Enjoy your weekend! I have to finish work and get back home!
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Thanks, cuculi. I also have a pretty intense personality and patience is not my strong point. My husband thinks (and I agree as much as my scientific mind will let me) that his mother who passed away 1.5 years ago "sent" us this baby since we got pregnant on a natural cycle. Maybe dear Janet is watching over our bean and we will be ok. She was so confident before she passed that we would have more children. I'm starting to have faith that things are just fine and that I shouldn't give myself the credit of being so sure about my dates and such.
Your biopsy report or surgery report will say how strongly ER and PR receptive your cancer was. It will be a number in percentage. So is your cancer is 10% positive that would mean it weakly responds to hormone. It has to do with how many hormone receptors are on the outside of your cancer cells. If I remember right mine was both ER and PR somewhere around 40-60%.
It makes sense that your doctor worries about recurrence for you if you had positive nodes. I don't know all the ins and outs because thankfully all my nodes were clear.
There is something to be said for having a doctor that has a similar philosophy to life that you do. My first oncologist was totally competent but was abrupt and had terrible bedside manner in my opinion. Probably good for some patients but not for me. I'm much happier with my current oncologist. She gives me a hug every time she sees me an encourages me to bring my daughter with me so she can see her.
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Thanks slg for your reply!!! I always think and think a lot... I work in a university so that is part of what I have to do... for good or bad, hahaha... but I try no to get stuck with those thoughts... and try to move on and when I "move" I do feel confident that everthing will be fine...
Unfortunetely, the mother of my husband passed away of cancer a year ago (not BC) and the dad of my husband is with lung cancer... so the situation is not the best... (sigh sigh)
REgarding my results ER (++) 60%. ALLRED 7. PR (+++) 5%. ALLRED 5. hER2 negative. Next time I will ask him more...
So yes I know there are risks but I just have to live the life I want now... we never know how long we will live... suddenly BC at our age so everthing changes but I have to think about me as well and not only about my son and my husband...
I am thinking about your little bean and the other mommys as well.
I wish you all a great weekend!!! take care!!!!
:) Now time to go home!0 -
Good morning ladies!
I woke up in a bit of a 'dark place' today. I'm 34 with a 13 month old, basically dx'd right after she was born.
Before the DX, my hubs & I talked about having another child. I just don't know if it's a reality anymore. He really wants another child, I do too, but I also want to be here for my lil' lady. I feel like I've let him down.
I've tried to research similar situations to my own, but haven't found too much, at least not on a personal level. Has anyone had, or know of anyone that has had, a child years after being dx'd stage IIIc, her+ with + nodes? It's a long shot I know, but my hopes are feeling like a wilting houseplant that hasn't been watered or tended to.
Am I just crazy to think about having another baby with things being the way they are?0 -
Hello Mimirpanda!
I believe I am in a similar situation... and probably a lot of us are... that is the reason of my last post. Slg76 had explained me her situation and I was comparing it to mine.
I am 36 and I was diagnosed May 2013. June 21st started my chemo (AC) and tomorrow Monday I will start my 12 sessions of taxol. As you can see below, I had positive nodes as well, but had a lumpectomy (as a matter of fact, quadrantopy or however you say it). My results, as I was commenting to slg76, were ER and PR+ and HER2-.
I have a 3 year old son. He just turned 3 September 13. I was planning to have a second child. As a matter of fact, I had a miscarriage May 19, 2 days before surgery. I still want to have a second child. I try not to get stuck in my thoughts because is too hard to accept all these changes at this time of my life...I believe that is something we are all thinking about... I want to focus on today, on me, on my life, my son and my relationship but it is very hard.
My oncologist says that 10 yrs on tamoxifen would be probably the best... but as I posted earlier, that is not what I want and I need to live my own life and not the life the oncologist wants me to. I do worry about my child but to have patience with him, to be happy with him, it is me who has to be happy, not grumpy or frustrated.
So, I am planning on a second child. As you see on this thread it will depend as well as how our fertility is... havent read much about it so I dont know much... and how long the oncologist says we should be on tamoxifen before a second child. My onc considers that having + nodes makes this cancer more aggresive so I know that if I tell him about a child he will say no. I probably change onc after finishing rads and before starting tamoxifen... (Have also thought about no tamoxifen and use herbs and homeopathy).
I also feel that I turned my husband down. Partly because of a second child, but basically because I am not the same person. I feel different, have different priorities and I feel my husband has stayed behind. Most of the time whatever I say or I do he gets upset... he is going through a difficult time (work, his mom passed away a yr ago and his dad is with lung cancer) but I am as well. Understanding what we go through is hard. My body does not feel as my body. I do PT, visit my psicologist, etc etc but still I feel he wants me to continue the same way... and I cant. I try not to get stuck con cancer thoughts but whatever I plan, whatever I do, what I eat, etc etc...it interferes my thoughts...
My decision now is a second child... when I finally decide I will have to be confident about my decision. It has to be me, and my husband, who feels fine and not the onc...
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Hi Mirmirpanda. Sorry you are struggling right now. We are put into such a difficult situation by having a disease that has typically been for women no longer dealing with childbearing. Having another child is a big decision even without having to factor in cancer. I do understand your feelings of letting down your husband but I'm sure you know in your head that none of this is your fault! And, if you can't/don't have another baby, that's not your fault either. It is a hard balance between going back to live the life we planned and accepting that our life has changed from the cancer. With all positive nodes I'm thinking that your recurrence risk must be very high? In my opinion your first priority should be to make sure you are here to raise your precious little girl. I don't think I would feel great about bringing another child into the picture if it was likely that my cancer would return. But I may be overestimating your recurrence risk? And either way you certainly don't have to listen to my opinion!! You just have to wait until you come to a decision that you and your husband are at peace with.
I do suggest that you make sure that your oncologist is giving you medical advise only. He/she should discuss the risks of a pregnancy with you rather than giving you a simple ok or not ok answer. If they are only saying ok or no to pregnancy I would suspect that thier own ethical views are biasing thier recommendations. Make sense?
I'm so glad we all have each other to talk to! Not many people understand the issues we face. I hope I don't sound judgemental in this post because I don't feel that way at all and one of the great things about this group of women is that we don't pass judgement on each other!
I hope you are having some better days and are enjoying the company of your little girl.
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panda..you could try starting a new thread here asking for people in your situation to respond? Couldn't hurt to try.
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Thanks slg for your post... it helps thinking, "rethinking" these issues.
I hope you are doing ok... positive attitude... I am thinking and praying for the 3 of you
Time for me to go to bed!
Cyber hugs and hope a good week for everyone
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thanks for all your good thoughts. It is a very long week for me. Until I hear otherwise I'm chosing to think that my baby is measuring small because conception was a little later than I thought. I'll let you all know soon. My scan is Wed.
Arale and Treadsoftly, how are you feeling?
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Hi ladies,
Im deep in the throes of first trimester nausea, vomiting & fatigue! Today Im 8 weeks 6 days based on my calculations. Im due my first scan in 2 weeks time, so fingers & toes crossed all will be well at that stage & the whole thing might start to feel more real!
Sig 76, best of luck with your scan on Wednesday, hope your little bean is growing well & you see a strong heartbeat!
Arale, same to you!
Hi to the new ladies, this is such a great thread. I read this thread regularly during my treatment & was always filled with hope with the success stories! Fingers crossed we will have lots more success stories in the months ahead.
xx
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Arale and Treadsoftly, how are you feeling? How are those little babies growing?
Unfortunately, I have some sad news to share. My little bean has stopped developing and it will just be a matter of time before I miscarry. We have suspected that something was wrong for a couple weeks since the baby did not show appropriate growth on my early ultrasounds. Although I'm very sad about this, it is nice to know for certain what the outcome is so I can move on. I've already spoken to my RE (reproductive endocrinologist) and we have a plan to try again as soon as my hormone levels drop and I start a cycle again. I'm determined to have happy baby news again soon.0 -
I've been lurking on this thread for a few weeks since taking a tamox break is something I'm considering in my future as well.
SLG, I'm so sorry to hear that your pregnancy isn't a keeper! You and I have a similar story, having both been diagnosed during pregnancy and delivering a baby who had to trek through chemo in the womb. My daughter was born in January this year and is doing really well. I finished chemo in April and now I'm continuing on Herceptin until next January and tamox you know, forever-ish (or five years). My problem is that I'm a bit older than you so I'm really running up against the clock of what might remain of my fertility after everything my body has been through this year and just my age - I will turn 40 next April. My oncologist recommended a minimum of one year on tamox before considering options so that takes me to next June... I'm not sure what will be possible for me but I'm really rooting for everyone on this thread!0 -
Hi Marlene,
I'm glad you found us! Thanks for your nice words.
I actually don't know anybody else diagnosed during pregnancy! What a terrible thing to have in common. I'm glad to hear that you and baby are doing well. What is your daughter's name? How are you doing in your treatment?
Tamoxifen is such a hard call for women in our situation. I understand your concern about your age. If you don't mind my asking, what is your prognosis? It looks like your cancer was pretty contained but if that's the case I'm not sure why you had chemo. I only ask because if your recurrence risk is high that is a big consideration in skipping the tamoxifen.
I have some thoughts for you about fertility. Keep in mind that although your doctor says she wants you to go on tamoxifen for one year before taking a break it is likely that you won't be able to try for a baby for longer than that. If your cycles stop during tamoxifen treatment it takes an average of 7 months for them to start back up after stopping the medicine. For me, I hadn't had a cycle since getting pregnant with Emily and when I stopped the tamoxifen it did take 6 months to get a period. Also, you may want to consider getting an AMH test done before starting tamoxifen. AHM measures a hormone secreted by the immature eggs in your ovaries so it is a measure of ovarian reserve or how many eggs you have left. Cytoxan is notorious for reducing fertility and I'm guessing that you couldn't protect your ovaries medically from this since you were pregnant. The AMH test will give you an idea of what your fertility window looks like and if you may have a change of conceiving in a couple years after tamoxifen.
I'm sorry you are faced with such difficult choices! I hate that breast cancer is affecting so many more young women. Cancer is terrible at any age but it feels like it steals more from you when you haven't finished having your family yet.
Keep in touch!
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slg, I have been thinking about you for the last week... You told us that Wednesday was your check up and we had no news I was wondering what happened... I am really really sorry but I know you fight like all of us and I am sure that if you want so badly your second child I am sure you will be able to have it.:)
Marlene, I am also sorry to hear your story. This is a great support group and gives me a lot of hope, plus I feel really understood. My friends are great but "talking" with you is better for me since we are going through the same or very similar journey.
I also want a second child, and this "journey" that life has put on us really sucks. That is the truth and I just try not to get stuck with cancer thoughts, negative thoughts and try to live and enjoy my everyday life. As slg says, I also believe that cancer at this age on women like us affects us so much... it has shattered my life, my plans, my relationship with my husband.... But I do not want to get stuck on those thoughts but focus on what I can do now and on what I am discovering with yoga, meditation, nutrition, gyrotonic, etc etc...
I am very intense... I friend in school once gave me a magnet that says "if you are going through hell, keep going". She told me that I will get through those difficult times... now I remember and I just keep going ...
cyber hugs!
PD I am having a lot of stomach ache since I started taxol last week (2 sessions already), Any suggestions?0
