Coming off tamoxifen early to have a baby
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Gosh marlene18, your stats are very similar to mine. I was dx in oct 2011, while breastfeeding my newborn. I was triple positive just like you. I went back and forth on having another one 5 million times. I think we will have another one, hopefully soon. Ive been on tamoxifen for 3 years next may. My dr cleared me to take a break at anytime and then go back on it afterward. I just want to live my life and not let cancer dictate. Its already taken so much. A friend of mine is around 6 months pregnant. She was diagnosed at 24 and had a 1 year old. She took tamoxifen for 2 years. Im so happy to hear good stories like that.
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Fight4two: I had a lumpectomy & radiotherapy so when I was pregnant, I had absolutely zero pregnancy-related changes on that side. I breastfed for 6 weeks on my good side. I felt very lopsided & as Marlene's sister said, particularly when in my bathing suit, but didn't bother me too much. I had a pretty good prosthesis.
My little girl is 6 months old today & doing brilliantly! I love being a mum! I celebrated being 5 years cancer free recently too :-) I'm back on tamoxifen now & will take it for another 2-3 years before trying for baby no.2, fingers crossed.
Good luck to everyone going through treatment & having to make the difficult decision of what to do family-wise. It's not easy.
Xx
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i am so glad to hear all your stories!!
I don't post as much as I would like but always reading and praying that we can all have the babies we dream of.
Enjoy life!
Have a great week.
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has anyone heard of slg?
Where are you??!!
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Treadsoftly - belated 6 mths birthday to your little lady!! Charlie was 4 mths last sunday!! Time is just flying. Christmas will be fun!!
Cuculi - no sign of SLG. I was emailing her also but no reply there either.
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Hello everyone!
I am still wondering about Slg... I do hope she is doing fine.
I have a question: did any of your doctors at suggested to take out ovaries or something like that? I told him that was not an option since I do want to have another child. It seems that what he only sees is cancer and nothing beyond that. I mean fighting against cancer but he doesnt see that there is a life, my life, my projects, etc etc.
Any comments about that?
I start holidays at work today so I want to wish you all happy holidays and an excellent 2015 for all of us...may all our dreams come true!
Take care
cyber hugs and kisses
xoxo
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Hey Cuculi - are you BRCA positive? If so, maybe the suggestion was made because of the higher risk for ovarian cancer. However, if it was just because your cancer was hormone positive, there is a drug that you can take to shut down your ovaries temporarily called Zoladex. I have been on it for a year now. It's not an easy drug - I had some depression as a side effect for the first few months and others complain of worse side effects. It is also expensive. In Canada I think it costs about $460 a month if you don't have private insurance. The results of the recent clinical trial involving this drug were promising for women under 35 though. http://www.breastcancer.org/research-news/ovary-su...
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Hi guys,
It is suggested for patients who are BRCA+ to have the ovaries removed by age 35 -40 (at the latest). I am BRCA+ and also had some cysts on my ovaries so it was recommended that I remove them sooner (and I did so at age 32). I do not have children yet but I did freeze embryos and am willing to use donor eggs if need be. Removing ovaries for hormone sensitive BC also helps to reduce recurrence rates significantly. Obviously I didn't want to remove my ovaries but ovarian cancer is usually much more aggressive than BC and if I want to be a mom I have to be alive and healthy!
Cucili - If an oophorectomy was recommended to you there must be a reason why, I would look into that. Ask your doctor to present the reasons and benefits compared to the risks and then you can make an informed decision. My doctors really laid it out for me and then let me decide and didn't give me an opinion until I decided. Also, you can consider removing your fallopian tubes in the meantime, this also reduces risks of ovarian cancer.
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Hi girls - wondering if any of you had an ovarian function testing while still on tamoxifen to find out if your fertility was affected by Tamoxifen? I've read conflicting things about whether or not the tests are accurate on Tamoxifen, so I'm wondering if it's worth it... or if it will end with an upsetting result that might be incorrect and just add extra stress?
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happy New year!!! I really hope 2015 will be a better year for everyone!
Thanks fd1 and Stephanie for your replies. I haven't done the BRCA test. I know I should but I have decided to simply move on. I know it sounds crazy but that's me. Maybe I decide to do it but not right now. I am on tamoxifen and that is enough for me right now. I feel fine and I have to keep telling me that.
Youngwithbc I did a lot of exams last February and had not started tamoxifen yet. I think it's an extra stress and the doctors I visited told me that the results were affected by the chemo. My last exam - november- had estradiol at 27.2. That is low but I just don't want to keep thinking about that. I will have soon another appointment with another onc whom I talked with almost a year ago and understood my decision of trying for another child ...so tamoxifen will be definitely less than 2 years.
Cyber hugs
Xoxo
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Thanks Cuculi. Can I ask how old you are?
Anyone else have any experience with fertility testing while still on Tamoxifen?
And I'm also curious how long people waited before coming off/what was recommended by your doctors.
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yes I did. My amh was 12. Low...then another doc said that probable wasnt accurate because I was on tamoxifen. I also had another dr tell me I could get pregnant on tamoxifen and just go off if the test was pos. Wth. I also did lupron to protect my ovarian function through chemo and the results of thaf trial showed great promise. I thinks its the tam that throws the tests off.
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Quick questions for those who have had babies after BC. If you didn't have life insurance before diagnosis, were you able to get it afterwards? When I was diagnosed, I was unmarried, childless, didn't have any real assets so no reason to have it. My husband and I have been married for nine months and have started to get offers to apply so I've been like, oh crap another starting a family post-cancer thing to worry about.
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HI Young with bc
I had an AMH test whilst on tamoxifen, I scored so low it didn't register. I'm not sure whether this particular test was valid or not given that I went on to have a little boy who is now 2.5 years old despite that low result. I found the results really upsetting at the time. I came off tamoxifen about 2 years after I started it to try to get pregnant. I was advised to wait three months after coming off before I tried to conceive. I was off it for about 15 months in total and am now back on it to complete the full 5 years. My cancer was only weakly hormone sensitive, though, so for me tamoxifen was of relatively low benefit. That said, tamoxifen holidays seem to be increasingly recommended by oncologists in the UK. i was 41 when I had my son and that influenced the extent to which I was willing /able to wait before trying to conceive.
Hope this helps and best of luck to you (and everyone else on the thread).
Lisa x
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A month ago I did a blood test for my AMH levels, they came back low and the obgyn recommended i do a pelvic ultrasound to confirm the levels. I haven't had sex yet and I sure as heck am not ready to have anything inside of me so I am waiting until after my wedding in May to have the pelvic ultrasound done. I was really sad when I got the results that my levels were low, especially since I'm only 24. I finished chemo September 30th, I can't imagine chemo remnants being the cause of such low levels .. I did go on zoladex though which put me in temporary menopause.. but I feel that chemo itself has destroyed my ovarian reserves. I also got news my cancer is 95% estrogen positive.. therefore, I'm not really sure what it means for my future and being able to carrying my own child. I'll be on tamoxifen for 5 years and I'm just a bit worried.. what if my levels stay low.. what if I can't have a child/preserve my eggs for a surrogate? My fiance/husband to be knows all of this and sees it as a test and nothing more, I'm thankful he is sticking around through all of this - especially since we haven't had a child yet.
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Thanks Lisa... that is partly why I don't even know if it's worth getting any testing. It seems so many people get awful results, and I don't know if I can handle it, especially if it ends up being wrong! Yet I also want to know, so not sure what to do. I think my cancer was 99% ER positive or something like that, so definitely a bit nervous to stop the tamox. Yet also so ready for a baby and sick of waiting. Decisions!
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Youngwithbc, I'm with you - my MO just gave me the okay to stop the tamox and start down the path of baby #2. I am a lot more anxious than I thought I'd be though, maybe because I was diagnosed during my last pregnancy? It feels so recent but I was on the tamox for 18 months and I'm already 40 so basically it's now or never. I'm getting a full-body CT scan first though so there's still that to wait for. Guess I'll keep trying feel some zen about the whole thing...
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Keep us posted marlene18. I was diagnosed when my daughter was 4 mo and I am really ready for #2 so scary tho. I just can't shake wanting to give my girl a sibling. I was on lupron+tamoxifen for almost 3 years. Now just tamoxifen. I went off lupron 6 mo ago and feel like I'm about to start any second....right now I'm just trying to decide when to take the plunge and stop taking tamoxifen. It's so hard to imagine not taking it! Any input on that girls?
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Hi ladies,
It's been a while since I posted but thought I'd share that I am now 15 weeks pregnant
we're so happy. I wanted to wait till now to share as I had a miscarriage last year. I stopped tamoxifen in march 2014, got pregnant very quickly and miscarried in June. Then I had the devastating news in August that my dear dad had passed away which was a horrible shock as he was my number 1. I then found out in November that I was expecting again.
Hope everyone is well?
My advise to you ladies, if you really want a baby... Just follow your heart and stay positive xx
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Rutts congratulations on your wonderful news!! May everything go smoothly for you.
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Hello girls!
Congrats Tess!!!!! I big hug from a warm day on the southern hemisphere!
Youngwithbc: I have just turned 38. I have been on tamox for 10 months. March I have my annual tests, ie mammogram, ultrasound, scan, etc etc. After that one I will talk to my oncologist #2 whom I can talk with and will discuss child number 2. I feel very good (although I have to admit that I get angry/frustrated sometimes) so going off tamox doesnt really get me anxious (maybe yoga, meditation and work is helping). My son is 4 yrs and 4 months and I'm 38, so I don´t want to wait that long. I keep saying to myself that I am fine and will be fine and that I really really want a second child. I have decided no to do more fertility tests since they do stress me. As I told you I did them last year and most results on the borderline. So now I am just trying to have a positive attitude, get positive results next march and keep going
we have so many new babies already! I think the attitude is everything!!!Badatuser: check different companies... I actually checked one for life insurance. But yes, it is another postbc issue...
Take care!
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wonderful news rutts!! Congrats!
Cuculi, I can really sense your positivity in your post, hoping great things happen for you re baby no 2
Xx
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yay! Congrats rutts! I love stories of post cancer pregnancy. It's so encouraging to me. Cuculi, that's amazing. I wish I could let go of that fear a little more. I have my 6 mo check up this week, I already got my blood work back and that's all normal. If everything goes well, I'd officially like to start trying once my elusive period returns. It's been exactly 6 mo since my last lupron shot. Praying to the period God's lol
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Hello girls!
Treadsoftly: Most of the time I am positive... I do believe we need to be so in order to be fine and feel fine.
Tatasister: there are so many beautiful stories that it fills me up with hope and happiness. Dont "get stuck" with negative or stressfull thoughts... push them away and bring positive thoughts!
Hope everyone is doing well! Have a great week!
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Had a meeting with my dr. She is still giving me the go ahead to get pregnant this year. All my tests were normal. She wants me back on tamoxifen PLUS lupron after after I'm done getting pregnant/having baby...Since I'm only 28. I was on all that for 3 years, so I guess I'm used to that. I wish I could just do tamoxifen alone...Anyone else doing the ovarian supression in addition to tamoxifen after having your babies. The results of the soft trial showed so much promise.
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Hey tatasister, I'm kind of on the same schedule as you. I stopped Tamox in December, had bloodwork in January, and have a CT scan next week. I see my MO the following week so I might ask her about lupron for later on. We don't seem to adopt the newest protocols as quickly here in Canada but that study seemed fairly compelling. I'll keep you posted.
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Ah Rutts!!! That is FANTASTIC news!! So delighted for ye))) how many weeks now? Its funny how things work out slightly differently for people - you had such sorrow with the miscarriage and your dads death last year and now look at how this year is shaping up for you!! I had my little boy last year and now this year my dear old dad passed away. Charlie is 6 months now so kept distracted with weaning which helps me keep busy through it all. such is life!!On the life insurance - what fun!! We had to get some last year for our mortgage. Because of my diagnosis there is a loading for the first 4 years (an extra 100 euro!!) but it drops significantly after that. I think the longer you are cancer free the less the years of loading... well that seems to be the way in Ireland anyways. We used a broker to source for us as I believe that it could have been a lot more expensive.
Good luck to all the ladies starting out - everything crossed for ye!!
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marlene18 good luck! I had my estadiol checked. It's still low, which would explain the lack of a period. My dr said that is normal after spending 3 years with my ovaries suppressed. She said they are just trying to wake back up. I wish they would get a move on already. I wont stop tamoxifen until my period comes back.
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Marlene18 and Tatasister: I hope to follow your steps soon. I have my checkups in March so then I would love to try for a baby. I have been in tamox almost for a year and I am planning on not waiting more. As I always say, attitude and positive thinking are really important, so if we really want something we just have to really concentrate and think about it...from our heart...
Tess, I am glad your little boy keeps you distracted... Charlie is growing fast... time flies...I miss my Dad... 6 months already... so I understand you. I just like to close my eyes and remember all those beautiful moments we spent together.
Any news from Slg????
Take care!!! (from the sunny southern hemisphere!)
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Tess: Sorry to hear about your dad, it has to be tough. Delighted to hear Charlie is doing well though!
Nil new to report with me. My little girl is 9 months old & doing great. She is dying to get moving but hasn't figured out how to get crawling just yet! I'm back on tamixifen for the past 7 months. I'm plagued with fungal infections since restarting, it's so annoying.... Probably should see my doctor & see can I do something about them!!
Hope everyone is doing well, xx
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