Coming off tamoxifen early to have a baby

Anonymous

Tess, you are from Cork? I consider it my second home, having studied abroad at UCC in 2005. I lived with a bunch of other exchange students in the apartments directly opposite St. Fin Barre's. Was back for visits in 2006 and 2011...hope to visit with hubby someday in not too long since he's never been to Ireland. Miss it so much!

Congrats on your little girl TreadSoftly!

Andreamia, how does your husband feel about you staying off Tamoxifen? In the end, it's really just up to you two, with consideration for the advice of your doctor. I would say however, that it might not be a good idea to TTC immediately after finishing Herceptin. I would give it six months to get out of your system and for your body to recover.

Although I am still in active treatment, I am feeling pumped because yesterday I met with a great BS who specializes in treating cancer in young women and she was so encouraging about my chances of conceiving in the future. She was also very understanding about me wanting to breastfeed and is recommending against a double MX (pending an MRI to make sure my good breast is clear).

andreamia

Thank you so much for your feedback, that is very helpful advice! Feeling normal is absolutely important! I am just having all sorts of mishaps with my treatments right now.  It turns out my herceptin is giving me heart problems as well (low ejection fraction). I now have to take some heart meds for three to six months to try and raise my ejection fraction. Even then, if my heart went back to where it was I will not continue the herceptin. First, because the thought of prolonging my treatment by 6 additional months is AWFUL. Secondly, I want to get this port out so I can get off blood thinners (I had a DVT from my port). Third, my heart is pretty important. Pretty sure I need it to function well for many years to come… Preventing recurrence is important, but not at the expense of my heart.  Finally, the sooner I get off herceptin the sooner I can start a family. Six months of being on herceptin is enough in my opinion.  After some discussion with my husband, we have decided I will discontinue the tamoxifen and herceptin all together. The herceptin was a quick and easy discussion for us while the tamoxifen took some thought. I have no idea if I will re-start tamoxifen in the future. I felt bad at first about debating the use of tamoxifen… I know there are a lot of ladies out there that have different types of breast cancer and wish they could have an option like tamoxifen. My quality of life is being affected by this though and I want to get on with life too. If I didn't have side effects I would definitely give it a try for a while longer. However, my body is telling me NO MORE and I need to listen to my body…  

Anonymous

If you are having heart issues than it certainly makes sense to stop the Herceptin! Are you high or low Her2+? Does your onc want you to try Tykerb or any other targeted drugs?

As far as your feelings on Tamoxifen, please don't feel bad. I remember learning that I was ER+ and feeling disappointed (even knowing that it gave me a better prognosis) that there was going to be one more roadblock to having a family. I thought I was crazy to feel that way until I start reading online and realized that many other young women felt the same way. 

andreamia

I actually have no idea if I am high or low on the HER2. I was ER+ around 85% and PR+ over 90%. I have an appointment with my onc in a couple weeks so I'm sure we will discuss everything regarding the herceptin.  I have no idea if she will suggest any other drugs. Until this point she has not said anything other than waiting to see if my EF goes back up for herceptin. I think the tykerb is for more advanced metastatic breast cancers in post menopausal women. Tykerb is usually attempted when cancer has not been responsive to other drugs like herceptin. I actually don't know that much about it. 

I am glad I am not the only one who feels this way about tamoxifen. I haven't told my onc yet, but I already feel relieved that I have decided not to re-start it. It's a good feeling. I know she will definitely advise me not to discontinue it, because she has a very aggressive approach to treatment for young people (that's one of the reasons why I went to her in the first place). Hopefully I won't back down or we can come to a compromise where I can start it after having a baby. Lol.

andreamia

oh, and I will definitely wait several months before TTC. It has been only four months post chemo and they recommend at least six. It has been over two months since my last herceptin.  I only just started my period so I want several regular cycles in before I even start to consider trying. Maybe at the end of fall assuming all goes ok from here on out. 

Cuculi

hello ladies!

It has been a while since I have posted here.

First I have to congratulate the new mom and the moms to be! I love these posts!!!!

Angelbaby: I had hot flushes during my chemo and homeopathy helped a lot... it reduced them to the point that I did not have them anymore.  

Lia13: oncs have soooo many different opinions! There are more modern or more traditional ones which are kind of live by a protocol or by an equation so all the other factors are not really relevant for them. Mine is quite traditional and has an aggresive approach... he is a good guy and very good in his job.  My last appointments he has been able to talk to me even if I had this angry face.  I get on a really bad mood when I have the appointment.  Have met a new onc, who LISTENS!!! He listened and said, I see you have your position on what to do already, so...  and said something regarding MY interests.  So just look for another one.

Cucho: I finished chemo December 2013 and during February I had fertility tests.  I am a little high but just the limit. I got my period February and on April started on tamox.  

Enerva: I got to freeze 1 egg.  The 1 egg of my normal cycle. I had decided to do it no matter what.  I just hate that oncs dont want to give you some extra time.  My fertility doc said to me that oncs dont like anyone to touch their patients.  They are so cancer orientated and dont even ask you what are your future plans!!!!!

GG: I want another child as well.  My future new onc knows it and did not try to change my opinion.  (Havent change completely of onc coz I want to check certain insurace issues).  He was so much more holistic and death is not such a tabu or such terrible thing for me.  I feel fine, I know I am fine and the mind is really powerful.  However, as a lawyer, I have to put myself in other situations such as death.  I have decided that I will definitely try for a second child next year.  I want my son to have a brother or sister.  In the hypothetical situation something happens to me, I will be more mmm calm to know my son is not alone. As someone said, it is a very personal decision and depends on how we weigh the different pieces of our own puzzle.

Andreamia:  I totally understand you.  I am on tamox since april but I have decided that if SE really affect me I will stop.  I just arrived from holidays and I was away 10 days and probably did not take it 3 days? Memory sucks and I am a teacher in university.  Thank god for my smartphone to write down everthing! and put alarms on everything! I have a pending appointment with a gyn-onc. You have made me think about a couple of 2 new cysts (although that was before tamox but after chemo). Will check that... However I will check on how is it going, if it is "not going" I will stop and probably, as other alternative treatments I used during chemo, I will not tell my onc nor my husband.  Both way too traditional. I know lots of women will think I am crazy (I also thought that being hormone positive was not good coz it meant tamox) but clearly the journey has to be written by each one of us since opinions are still not uniform.  I believe that surgery, chemo and rads are enough, but I have given a shot to tamox, although I believe from now on I have to keep my body clean (ayurvedic medicine, yoga, etc PM if you would like any info).

Bad at user: You have a good doctor! lucky you!

Sakura: you had nodes involvment as well.  My doc says that means more aggresive and that is why he is so onto tamox and last time he even said about the ovaric function, to stop the ovaries to function... no way!

Well, this has been a long post...sorry! I love to hear the baby stories and fertility issues.  Thanks to all of you I have seen other doctors and start understanding more in order to make my own decisions, in particular to follow your dreams and never ever quit trying!!! Gotta go to bed, I have a long week... 

Slg, where are you? Hope you are doing well!

Hope you all have a great week!

Anonymous

Andreamia, how low did your ejection fraction get? I didn't realize you were already off the Herceptin. I had a MUGA scan recently and my EF has gone from 72% to 59% in five months. Yikes. No one has mentioned anything to me about it yet, I just saw it amongst my paperwork. Personally, I would feel really vulnerable if I had to go off the Herceptin but that's because I'm very highly Her2+.

This is what I told my mom when she was trying to decide whether or not to get a yet another opinion about her all-over-the-board FISH test results. If you don't pursue the more aggressive option, will you be able to sleep at night or will you lie awake worrying about recurrence? And if you do get a recurrence, would you look back with regret at not doing more? If the answer to both questions is no, then you've made the right decision.

Oh, and I had another "this could improve my prognosis but I don't want it because it could mess with me having a family" moment today when my onc told me about the results of the SOFT trial. I was like, oh crap another potential roadblock. Fortunately, both my onc and BS are awesome at striking a balance between being aggressive and treating the whole person, not just the cancer. They are flat-out against removing the ovaries and have major concerns about fertility, lifestyle and health implications of ovarian suppression. Love them.

Cuculi, I seriously question your plans to not tell your husband if you go off Tamox. He's the one who will carry the burden of childcare, etc if you have a recurrence...or possibly even face being a single father. If you cannot reach an agreement, then ultimately it's your body, your decision, but he has a right to know.

andreamia

Hi bad at usernames (haha),

My EF was around 45-50 the first time and I was advised to stop herceptin and wait. Then, I had a repeat echo four weeks later and it was still spiraling downward even further around 40. It had been around 8 weeks since my last herceptin infusion with the 40 EF. I have not had symptoms yet, but my cardiologist said that you typically start seeing symptoms (fatigue, shortness of breath) when your EF is in the 30s and that's a point you definitely don't want to be at. I am on two meds to increase my EF and he said it could take 3-6 months to get it back up IF it does go up. There is a chance it may not.

I am not the kind of person that will live in fear or regret if I do not finish my herceptin with my current side effects. They are rather serious side effects and I will need my heart for a long time to come. I was sad that my heart was being affected like this on herceptin because it has been the one treatment I haven't minded at all and fully intended to finish. Until the heart issues I had zero side effects and it has been a breeze compared to chemo or radiation. However, now I am scared to go back on it even if my EF goes up. 

andreamia

Talked to onc and they agree on stopping herceptin for good. They are really wanting me to finish tamoxifen. My onc told me that I will have a higher risk for recurrence if I get pregnant this soon after diagnosis because of the hormones with pregnancy. I think she was trying to tell me that after that two year window where risk is highest and I don't have recurrence then it's ok to try and pregnancy should not increase my risk then. I didn't think it mattered what time you got pregnant after breast cancer diagnosis. I assumed that pregnancy was thought not to increase risk at any time... I'm so confused

Rutts

hi andreamia I don't think it's pregnancy within the first 2 years that increases reacurrance risk, I think it's just in general that the first 2 years is higher risk for reacurrance anyway. Also I was told by my onc doctor the 2 year wait also helps to get all the poison from chemo out your system to give you a better chance of trying for a baby. I waited just over 2 years as I also want to make sure there's nothing in my system that may harm my baby when I do eventually fall pregnant. Everyone has there own personal views on these subjects. You just have to do what you want  

Anonymous

Andreamia, my understanding is that pregnancy hormones don't cause a recurrence by themselves, but if there's cancer already present in the body, the hormones can make the cancer grow faster. So I'm guessing what your onc is getting at is that you are most at risk for recurrence in the first few years so if you did have one, a pregnancy could make it more severe than if you were not pregnant.

However, plenty of women have gotten pregnant in under two years and it's worked out fine. OTOH, I believe you are only 27? So there's no real rush to get pregnant and beat early menopause, which is more of an issue for someone in their mid-30s and older.

andreamia

Bad at user - I think that is what she was trying to say. When they say first two years are the highest, do they mean from the date of removal of the tumor or after treatment is completed?

I do know that 27 is still young and leaves me time, but I do have a couple of worries. The first being I want more than one child. I grew up in a large family and having one of my own if very important to me. Having gone through chemo and having chemo induced menopause I believe does shorten my 'window of opportunity' in the long run… Someone correct me if I'm wrong. The second being my mother had me later in life and I want my children to know their grandparents. My original thought was to wait maybe another half a year or so before TTC so my body can re-adjust and recover.

Finally, the tamoxifen is giving me issues… I do not like that it is messing with my ovaries and causing several cysts, especially the complex ones. It scares me because if the cysts don't resolve and get bigger then I have to have them removed. If the cysts take up a good majority of the ovary that might mean having to remove part or all of the ovary. I have a repeat ultrasound in a month so I'm crossing my fingers. 

Another option my onc suggested was Lupron instead of Tamoxifen to avoid cysts. I am just so worried to be 'messing around' with my ovaries like this and shutting them down… Anyone have experience with Lupron this way (not the suppression during chemo, but use after chemo)? How long after completing Lupron did ovary function resume? So many questions... 

2 years for the body to recover Rutts? I have never heard anyone say it takes that long. Seems awfully long, but I agree that its the recurrence issue that has doctors worried about those first two years.

Rutts

I don't think it's 2 years for your body to recover! But definitely up to 2 years for it to finally/completely leave your system. All my life I have suffered with eczema and roseaca on my face, during chemo it completely disappeared (the docs told me it would) and it didn't reappear until about 20 months after finishing chemo, which my onc said that's because chemo has left my system now. 

Like I said previously it really needs to be your decision, your the only person that will know if your body feels ready to carry a baby. 

I wasn't going to mention it but we started trying in march and I actually fell pregnant 3 weeks after trying (very Quick) but unfortunately I'm coming to the end of a miscarriage at the moment. I know I'm ready to have a baby but I think it was my body telling me it's not quite ready yet. I'm seeing this as a positive tho as it means I can actually get pregnant, which I thought we were going to have problems with xx 

andreamia

So sorry about your loss   However, yes that is a positive that you can get pregnant so that is comforting. 

It sounds like miscarriages can happen frequently after chemo, but I mean regular women have miscarriages too so it could be just a coincidence. I really have no idea if having been on chemo increases the likelihood of miscarriage even 1 or more years down the road. That would be interesting to find out.

Enerva

Sorry to heard about your lost Rust. Keep positive and strong 

sakura73

Rutts

I am so sorry about your miscarriage. I too became pregnant very quickly but then lost that first pregnancy. It was awful but there was some comfort in the fact that my fertility had returned. I wish you calm days ahead and a successful pregnancy very very soon.

TessmereldaC

oh my god HUGE congratulations Treadsoftly!!!!!  I am overjoyed for you!!  Thanks so much for mentioning the breastfeeding - it has been playing on my mind and I can't seem to find much in the way of support or advise on breastfeeding with one breast - gives me great hope now that I hear your success!!  Big hugs to your little lady xxxx  will keep ye posted on news!!!

angelbaby1

Hi ladies,

I guess today im just after a little peace of mind. my period returned not long after chemo and while they are generally longer cycles (usually 5-6 weeks) they were always pretty regular. the last few months they have gotten longer and longer and my hot flushes have increased big time. I am terrified im in menopause. its been over 7 weeks since my last period. I had zolidex during chemo and im only in my 30's so im wondering if it is really likely. I know not everyone has a period on tamoxifen, but what id like to know is - has anyone had regular periods since finishing chemo only for them to stop? and did it have anything to do with menopause? I have only 1 more week til my 2 years is up and I can begin my baby break. I just hope I didn't leave it too late after all.

thank you, advice and opinions much appreciated.

Enerva

hi I  worder if this link may help.

I am also worry my period stopped in April and it hasn't come back took some blood test to check levels. Ll get results on June 17' 

Keep positive. Good luck 

http://www.breastcancer.org/tips/menopausal/ask_ex...

angelbaby1

Enerva - how did u go with your results?

still no sign of my P. my last one was april also. its delaying an MRI scan too which is annoying. im holding out for after the weekend when I can finally stop tamox. hopefully everything will then return to normal.

Enerva

well not so great,  levels are low so my FD thinks if my p doesn't come back then yes I can considere early menopause.  She says the rule is a year so if my P, does not come back in another 9 months I am defenetly menopausal.  The only good news is that strogen level is very low and in a way it's good due to been 95% + Es. Oh well never mind I may just face that maybe the mom role is not going to be mine.  I am ok I guess,  now trying to focus on my reconstruction, hoping it's fix soon.  I will keep wishing you all the best of luck and I will let you know if anything changes. 

andreamia

Angelbaby,

My period came back four months post chemo and after I stopped my one month of tamoxifen (it gave me cysts). However, my period lasted over three weeks…. it went from normal to light, then super heavy (changing it every two hours or so). It was new and old blood. Not sure if that's good or bad… I was on blood thinners, which may have affected it. Now it finally stopped yesterday, but just wondered if anyone else had periods like this? I was very regular before chemo. My hot flashes stopped about a month ago after I stopped the tamoxifen. 

sakura73

Hello all. Popping in to wish you all well and to say that my daughter Cecilia Rose was born on Monday weighing 9 pounds 3 ounces and with a full head of chestnut brown hair. Though I say it that shouldn't, she is perfect. I'm proof there are healthy babies after breast cancer. Don't give up, any of you. It's a battle but so, so worth it.

Enerva

sakura73  congratulations!!!!!! 

Rutts

congratulations sakura73 xx

andreamia

congratulations

stephaniegee

Congratulations to all the women having babies on here!

I just joined this thread and had to share a little rant. I was diagnosed in September 2013, ER+, BRCA+ too. Immediately I went to a fertility doctor to freeze embryos as I was just about to get married and we were eager to start our family. So we did one egg retrieval in November and got 11 frozen embryos. We also went through an agency and found a surrogate. Fast forward through BMX and 6 months chemo and we are already getting starting with transferring our embryos. When our embryos were thawed all 11 survived but only 4 made it to the 5-day blastocyst stage (stage to transfer) and from there we did further genetic testing and only 2 came back as normal, strong embryos. Needless to say we were devastated as we didn't realize this could happen but apparently it's very normal. We thought all we needed to do was freeze some embryos and we'd be good to go…not the case. I'd like to do another egg retrieval but I'm not sure what my ovarian reserve is like post chemo and if my oncologist will even let me because this means I will have to go off Tamoxifen or put it off, because I haven't started yet….

Anybody else have similar experience?

h0pe

congratulations!

stephaniege - I went through similar experience. Diagnosed with ER+/BRCA+ in November. Wen through a round of IVF, froze 5 embryos at day 2. I'm in the process of finding a surrogate now. I worry that I'll need to another round of IVF, but try to think positive. I know 2 people post BC who had babies through surrogates. How old are you? Did they put you on Femara to control your estrogen levels. They did that for me; however, I wonder if we could've gotten more eggs if I did it the traditional way. How'd you find your surrogate? I'm talking with 2 different agencies now. Good luck with your transfer!

stephaniegee

Hi hope,

Wow, it sounds like we have very similar situations. I'm 32 years old. Yes they put me on Femara, which is what they would do again if I do another retrieval. I found my surrogate through an agency (I'm in Canada). We got really lucky with our surrogate, we were matched almost immediately and we got along right away. How old are you? Have you done chemo and surgeries? 

h0pe

Steph - I'm going to PM you.