Coming off tamoxifen early to have a baby
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Thank you TreadSoftly! I requested a phone call from my oncologist because not knowing the whole nipple pain thing was driving me crazy. She told me that if I am pregnant, it's possible to have breast tenderness in the remaining breast tissues of the spared nipples. But she also told me that if it turned out I'm not pregnant, and the breast pain continues, I should consult my breast surgeon. Hopefully it won't come to that. I'm keeping my fingers crossed that I'm pregnant! I'm hesitant to take the pregnancy test again because seeing negative makes me sad...
Eddie1981 - I completely understand where you're coming from! I also carry BRCA mutation, and I'm not even from a family with breast cancer history. No woman in my family (there are a lot of women in my family!) had breast cancer! And, no I'm not adopted. So imagine my shock when I found out I carry BRCA mutation. But, I think I lived in fear long enough. To live in fear is to not live at all. I know my prognosis, but I don't want stats and genetic imprints to rule how I live my life. I did worry about passing down the mutation to my future child, but I think I lived & been living a fulfilling life regardless of BRCA gene. Life is beautiful regardless, and that made me realize I will be more than happy to bring up a child and help him/her live a fulfilling life regardless of some stupid genetic mutation. I do fear though - what if I bring a child into this world, but I won't be around to watch him/her grow up. After all, one of my survivor friends had a beautiful baby girl but died a year after giving birth at age 30 because breast cancer came back at 8mo as stage 4. Yes, I am afraid. But, I still want to live my life to the fullest potential. If I die trying to bring a beautiful life into this world, I think I can find peace in that I will be survived by my precious child and my wonderful family. After all, we all die at some point. Death is a part of living... Embrace the fear Eddie1981. Don't let it run your life....
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wise words followyourheart. I agree with what you have said. We must live our life, follow our dreams, make time for doing what we like. My dad passed away last Saturday 16th. He was 67. After 2013 this was the last thing I could have imagined going through this year. I meditate and it helps. Helps me to feel well, to be calm with this loss and the worries of BC.
A big cyber hug for all the new moms.
Slg, are you ok? A special hug for you.
Good night!
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CuculiI'm so very sorry to hear about your dad - he was so young. My thoughts are with you. My own dad had a massive stroke 8 yrs ago and needs 24/7 care. meditation is great - I must do it more often. Sending you cyberhugs and best wishes xx
Tess
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cuculi, so sorry to hear about your dad, ((hugs)))
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So sorry about your dad.
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thanks! I am still in the process of accepting my dad's death. I want and need to be calm... Meditation helps and I should do it everyday.
Has anyone heard anything about slg?
Is it good or not that the endometrium is thin? I got confused after visiting my gyn/onc and then the onc...has anyone any idea? I am always checking coz I am scared what tamoxifen can do to my body if I want to have children...
Does tamoxifen makes or made any of you tired? A particular way of feeling tired in my case... I know this is not the topic but since we have the same age, or similar, just wondering...
Good night!
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Hello, I've not been on here for a while. I've been having a really bad time lately!
Firstly I love reading all the good things on here, really makes me feel like there is light at the end of this long tunnel.
Really sorry to hear about your dad cuculi, I know exactly how your feeling.
I stopped tamoxifen in march and fell pregnant very quick! I had my bfp in May but unfortunately had a miscarriage in June, it has been the worst ever, I was only 6+2 weeks, but after a failed ERPC and 2 lots of medical management my miscarriage finally finished after 11 weeks!!! Yep 11 weeks of pain, bleeding and a roller coaster of emotions!!
Then sadly on the 1st August I lost my dad
it was very sudden and unexpected. He was only 58 and had a heart attack while at work. Heart broken is an understatement. My dad is my world and it just doesn't seem fair that he's been taken from us! Not sure I can take any more heart break, upset or bad news!?! Sorry for my post being such a downer.
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I'm sorry about your dad and all your recent troubles and heartbreak. I hope things turn around for you pronto.
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aw, sorry to hear about your miscarriage & the sudden loss of your dad rutts, you poor thing ((((hugs))))
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Rutts, I am so sorry to hear about all of your heartbreaks. I hope things turn around for you soon.
I have been up and down trying to make decisions about my next steps in my baby making journey. Basically, I am wondering , has any of you done IVF treatments post chemo? I would love more feedback.
I have a surrogate and we have used up all our embryos on 2 failed transfers. Now I am considering doing another IVF egg retrieval or IVM. OR turning to donor eggs..
Anybody with feedback, very helpful!!
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Okay girls! I need your advice. I havent posted on this board before but have looked at it probably 500 times. Im a 3 year breast cancer survivor. Diagnosed in 2011 while breast feeding my 4 month old daughter. I was 25 and er+pr+her2+ stage 1. We desperately want another child...and our daughter keeps asking for a sister. I have been on tamoxifen and lupron for 3 years and my onc told me I could start trying. My questions are: are there any her2 survivors out there that have gone on to have babies? Are there any of you that had cancer while you were pregnant and went on to have more babies and are there any of you that had babies after tamoxifen and lupron therapy. Also any encouraging stories are so very welcomed regardless of your stats. I just need some imput girls!
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Ah Rutts - I'm so sorry for your losses- what an awful time you are having. Praying for easier times ahead for you xx The positive that I took out of your message is that you got pregnant so quick so fingers crossed for you. Hope that doesn't sound insensitive - just hoping that good times are ahead for you x
stephaniege… I had my son post chemo with IVF aged 39. I was 6 yrs post chemo and 1.5 yrs post tamox when I conceived on the first round of IVF. If I can answer any questions please ask.
tatasister1… I was HER 2 pos and had a baby a few months ago. I wasn't preg when diagnosed 6 yrs ago. The fab news is you are still SOOO young and have so much time to conceive which is just great news. I know SLG was preg when diagnosed 3.5 yrs ago but she seems to have disappeared which is worrying.........Cuculi - I was talking to her via email for a while but not getting any reply...hope she is ok.
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Hey TessmereldaC, thanks for posting... we have fairly similar diagnoses with the early stage and high grade/Her2/ER+... it gives me a lot of hope reading that you had a baby post-chemo. I'm currently 30 and trying to weigh my options for coming off tamoxifen at some point. Really scary to think of doing it, yet I also really want to start a family asap. Anyway, thanks for posting.
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I have a theory that being Her2+ will work in your favor. Our big gun is Herceptin and we tend to respond to chemo better that hormone positive and Her2 negative. Therefore, hormonals aren't as important a part of our treatment plan. That's the only reason I can come up with for why every doctor I've talked to seems fine with me taking my break in 2-3 years, despite being 80% ER positive and Stage III.
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rutts, I am really sorry for your loss as well... I just think we have our own angels watching over us.
Regarding the questions about coming off tamoxifen, I appreciate all the info shared. I think that the final decision is on us...all the oncs have different opinions, so it makes it harder to make up your mind.
Tamoxifen makes me basically tired...a particular way of tiredness. Totally sucks. I want to get on with my life, and having a second child is part of it. I feel fine and believe I will be fine. Sometimes we get so involved in BC that we forget about life and I just don't want that to happen. These posts give me so much hope
I am still worried about slg...
Good night!
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cuculi your right we do have our own angels looking after us now.
The 1 thing my dad wanted was for me and my oh to have a baby, so TessmereldaC I don't think you are being insensitive, you are in fact very right. Yes I can conceive and I will conceive again and I will hold on to my next lil bean. Positivity goes a long long way....
Life is way too short to be umm'ing and ahh'ing, you just gotta follow your heart and do what you think is right and what makes you happy!
Xx
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Hello Everyone,
I haven't posted on this site for a long time because I discovered my mother was reading these pages and I couldn't cope with yet another invasion of privacy when, as you well know, this whole process is an invasion of privy on so many levels! Anyway, I have still read lots of your posts and I think this is a brilliant resource. With so little research available to us, at least we have each others' stories to inform and inspire.
I just wanted to share that I am pregnant - not to brag, but just as a reminder it can happen and I really hope it will for you. Mind you, it's not out yet, so don't count your chickens and all that...
In case you're interested - I had a lumpectomy for stage 2 ER+ cancer and auxiliary clearance in 2010. I came off Tamoxifen just before 3 years. My oncologist was happy for me to stop taking it at 18 months, but my consultant advised the full 5 years. I was reluctant to leave it so long, but also nervous at the thought of stopping. I really struggled to gauge how important Tamoxifen was to my health. When new research suggested Tamoxifen should be taken for 10 years, my consultant surprised me by changing his view, arguing as I wasn't going to take it for that long (thanks to my age) I might as well come off it now. Still feeling lost in that grey area of ignorance, I ended up compromising at nearly 3 years.
Having had barely any periods post treatment, I had three periods in the three months I was off Tamoxifen, which was encouraging. Having convinced myself it could easily take a year (if at all), I was then unbelievably shocked to realise I got pregnant first time. I did follow some information in a book I got but I'm not sure if we're allowed to recommend publications on this website? Obviously it might be a complete coincidence, but equally the book may have helped. Mind you, I was totally clueless before I read it, so I guess any info was useful.
Anyway, I wish everybody on this board the very best of luck and I encourage you to do what feels right for you. Obviously I have no idea if I have jeopardised my health coming of Tamoxifen when I did, but after feeling weird the first day I didn't take the pill, I soon got used to it and am thrilled with how things have turned out so far. I think everyone on this board shows great attitude, so keep it up and thanks for sharing all your dilemmas, thoughts and stories. It helps to know we aren't alone.
Very best of luck x
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Thanks for sharing your story Cloudberry... congrats and best of luck with your pregnancy!
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Delighted to hear your good news Cloudberry! I came off tamoxifen after 3 years too, but have gone back on it after giving birth to my little girl in May. My consultant wants me to complete another 2 years, which I am happy to do!! Best of luck with everything going forward, x
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Congrats cloudberry, great news! Cucili, I agree that sometimes we get so involved in BC that we forget about life. I felt that way for a long time and I just realized the other day that I am finding myself almost never thinking about it anymore even though I only finished treatment in April. My hair is short, but it's back along with my sex life and normal periods. I just started a new job and I'm not finding myself going to doctor appointments every week (I haven't had to go in two months!). I feel so normal, it's just unreal. I started crying the other day thinking back to what was happening to me just one year prior. My decision to not try tamoxifen again does scare me sometimes, but I am just so happy that I am here and living life the way I used to that it's easy not to dwell too much on that decision. And sometimes even THAT attitude scares me, if that makes any sense.
Bad at user - I like your theory. I am also triple positive and have often wondered how it will affect me differently, especially when I decide to start a family.
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Hello
ladies!Cloudberry:
CONGRATS! As I always say, I love these posts! I understand the privacy issue…
Regarding tamox, I wanted to ask you why your consultant said that if you were
not going to take it that long because of your age you could come off now.I think it
is ok to suggest publications… (You can PM as well, I would like to read that
book).Andreamia:
totally understand you and your attitude.
I am taking tamox however I have
decided to take it 1 year. I want a
second child and have decided not to wait that long. I have a similar attitude: I have done
everything, I am taking care of myself with homeopathy, aryuvedic medicine,
yoga, pilates. You are going to be fine, your attitude shows it.As a result of doing what I believe will help
me, I feel fine and few SE so I just don’t thing about BC and I think about
life today. Not the future but today. Maybe a bomb explodes today or aliens
come (I know I am exaggerating) and I was not enjoying the present. I think these posts helps us to enjoy, to
look for a baby coz it is what we want and we must go for it. Follow
our dreams as cloudberry said.Enjoy your week!
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Cuculi: Wise words! Yes, living in the present is so important. Dwelling on the future or the past (which I'm sure we have all done at some point) is just a stressful way to live. Haha, and yes if an unexpected catastrophic event were to happen I wouldn't want to have any regrets on how I lived my life. I was in a motorcycle accident five years ago where I was hit and dragged by a drunk driver. It took time, but I was able to move on from that and now I can move on from breast cancer. It's almost like that incident prepped me to cope with these crazy situations better. Maybe that's why I have such a nonchalant attitude right now? Living in fear of a breast cancer recurrence and having it dictate how I live the rest of my life is just so sad to me. I know many ladies on here tell me that I'm still young and have time for babies… but when you escape death twice by the time you're 26, you REALLY wanna live your life the way you want to. For me, this is having children. Not 5 years from now, not 2 years from now, but when I feel that it's right to for me… which will hopefully be in a few months when I qualify for FMLA at work. Lol!
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Cloudberry - huge congrats!! yet another wonderful success story!!! xx
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This question is pretty specific, so not sure if I will find any feedback… It's for you ladies who have had herceptin. When I had herceptin I developed a low EF and had to stop taking it and wait for my EF to go back up this past summer. It did go back up and I feel fine, no shortness of breath or anything like that… but now I am wondering how my heart will handle a pregnancy. Did anyone here have any increased heart risk with pregnancy after being on herceptin? I know that even being on adriamycin can affect your heart as well. I am guessing the heart issues with these drugs are temporary, but I wanted to make sure it didn't leave us more susceptible in other situations such as pregnancy. I will ask my cardiologist but I don't see him for another two months.
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Hi Andreamia,
I'm probably a good person to answer this as our diagnosis look very similar. I had Herceptin in 2008 after 8 rounds of taxol and Cytoxan. Had Herceptin for 1 year. I was monitored very closely throughout this year as I was born with a hole in my heart and had major heart surgery at the age of 7. This left me with a permanent heart murmur. I had no issues. I went back to my cardio after 5 years and he was really happy with me and all was ok. Neither my onc or gyni had any issue or concern during my pregnancy this year and even though someone had mentioned to me in the past that with my history I would had to have a C section my gyni did not agree and reckoned that I would be fine - I did end up having a section but only because the baby was too big. I don't think the situation would have been any different had I gotten pregnant any sooner. If I was you I would ask my onc for a follow up echo (I think it was routine after 1 year of being off Herceptin anyways) if you have any concern. Are you feeling ok since? Have you finished Herceptin now? How long were you on it for?
Tess
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Okay that's good to know.I was on herceptin for 6 months before it started to affect my heart. It was scary how it dipped so low rather quickly and I had to stop the herceptin. It took over three months to get back to a normal ejection fraction. My onc and I decided that I had received enough of the herceptin and I would not go back on it. The risk to my heart wasn't worth it.I do feel good now. I am a long distance runner and haven't had problems... I'm supposed to be taking some blood pressure meds as a precaution for the next year, but i am very forgetful with them and I really don't like to take anything if I don't have to. I had a terrible cough as a side effect from those meds. I'm supposed to get a repeat echo in December. Hopefully if all looks good I will feel safer TTC. I'm probably just being a worry wort as usual.
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Congrats to all the new mommies!! For those of you who are breastfeeding and had a lumpectomy, I have a question. Is it bad to breastfeed on the lumpectomy side or is the lumpectomy side unable to produce milk (ie why only breastfeeding on one side)? And if you are breastfeeding only on one side, is there any tricks you have to making your figure look more "even"? I know that if I was healthy and had just birthed a healthy baby, I would be over the moon -- but my self conscious side wonders how my appearance would look with one breast that feeds a baby 2x as much as usual, and one that lays dormant!!
I go back and forth about whether or not to have a second child (diagnosed while pregnant with #1), and when I would do so -- my oncologist is very conservative and it seemed like the 5 years on tamoxifen was not up for discussion. I'm still young, but was not planning on a 7 yr age gap between my children.... hearing that many of your onc are ok with you taking a break at 2-3 yrs is very encouraging. I agree that we should live our lives, but to be honest, I feel like I have no concrete information and this makes me SCARED
sorry for the long blab but these things are always on my mind and I think my husband is tired of hearing me go on and on about this stuff... thanks for listening and offering any words of wisdom!
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Hi fighttwo,
The truth of the matter is that there is just not enough research done to give any reassurance to us young women that still want to have babies after breast cancer. My doctor is also very conservative about Tamoxifen and actually recommends 5-10 years. I am also BRCA + so we are not taking any chances stopping Tamoxifen early so we are using a surrogate instead. Even doing that I am scared and have apprehensions as recurrence is always possible. My doctor recommended that we wait 5 years as the first 5 years are the highest chance for recurrence but obviously I don't want to put my life on hold because of fear. But at the end of the day I did get some good advice and that was that ultimately it is my husband's decision because if the worst were to happen he would be the one to pick up the pieces. He is behind me 100% but it's still difficult, we don't realize how much breast cancer affects our lives even on the road to recovery. There are no simple answers, everyone's situation is so different, just need to go with what's best for you right now.
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I think all onc docs have different views on the whole 'having a baby break' because they don't have any concrete information on this subject. I do think that following your own beliefs/instincts are important and you have to do what your happy and comfortable with. As for breast feeding I will only be breast feeding from my good side when I do have a baby as I've been told by my doc that I won't be able to from my bad side as my cancer was ductal?! I was recently pregnant, but unfortunately miscarried, and my good side did grow and my bad side didn't but a good bra hid it well.
Really hope everyone is doing well?! There hasn't been much activity on here recently
Xx
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fight4two - My sister breastfed both her babies on one side after lumpectomy because the treated side just wouldn't really produce. I think it's a result of a combination of all that tissue being removed and the radiation afterward. It did make her pretty uneven but you just wear some layers I think. She felt a bit funny in her bathing suit when we took the kids to the pool but I think she's beyond vanity at this point.
I'm the same as you, trying to weigh out the risks of having another baby after being diagnosed while pregnant. My oncologist said she wanted me to take tamoxifen for at least a year before considering having another baby and if I wasn't already 40, that would probably be at least 2 years. I've been on it for 16 months now. But the truth is that they just don't know. I know that people's first reaction to even considering a having a baby so soon after cancer is that it would be risky. But what is that based on? I've done all the treatments (one oncologist recently told me my chance of relapse was "slim to negative"!) and I'm trying to take care in terms of fitness and nutrition. How long should your life be on hold after what is hopefully just a blip in your otherwise long and healthy life? I'm wrestling with this too...
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