Coming off tamoxifen early to have a baby
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Having support from your husband I would say is the most important factor. My husband absolutely does not want me to get pregnant, not just for the fear of recurrence but also for the fear of putting my body through so many more changes and risks after we just went through so much to get it healthy. Since the beginning of this whole ordeal we decided to use a surrogate. It's not the right choice for everyone but for us, it makes the most sense for us. We have no children yet,(I was diagnosed at the same time as my wedding) and I desperately want to become a mother but I have to do what is right for us as a family.
The fact of the matter is recurrence is always a possibility with us, we cannot control it. I have done everything and then some to reduce my chances for recurrence but I have also accepted that this is a horrible disease that cannot be predicted. To just get pregnant because you really want a baby without a supportive husband or backup plan is not really responsible. Whether we like it or not we have to think about so many things when family planning. It sucks and I almost resent all those happy fresh faced couples that just get to honeymoon and "try" but it is what it is.
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So my onc's decision is 2 years after the end of chemo. Thanks Lolis and Stephanie for the quick responses. My cancer was 95% ER/PR so there's that. Although the Azim meta-analysis showed a decrease by 41% in recurrence for those who did get pregnant, it doesn't show what their stats were, if they breastfed, etc so we don't really know if the pregnancy ended up being protective or if it was another factor. Here is what I have dug up so far...
http://news.cancerconnect.com/pregnancy-after-brea...
file:///C:/Users/Main%20User/Downloads/Fertility%20and%20Pregnancy%20after%20Breast%20Cancer_Kolp.pdf
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Hello Clarrn! I totally understand you when you say you are obsessed with getting your life back. I was diagnosed May 2013. When my treatment finished I was desperate to "start life where I had left it". However I realized that there had been changes and I definitely could not do that. I decided to relax and take things step by step. This I realized after visiting 3 fertility doctors and making many exams (ultrasounds, blood tests, etc). It was just too much and the info was not exact coz chemo has side effects that don't contribute with those tests. So I decided to take care of myself: body, soul and mind as I always say. One year later (and 1 year of tamox as well + herbs + homeopathy + acupuncture, etc etc) I feel calm and ready to think about the idea of a sibling for my son (he is 4years old). It has work for me to take it slowly and I suggest you to try. "Fix" the tamox and clots, focus on that and then, when that is over the next step, to avoid feeling overwhelmed.
Regarding, hubby. At the beginning he did not agree. Now he does and totally supports me. So going slowly helped. The stories in this thread helped as well. Studies as well (I have to read the link posted). But the decision is really personal so I don't think there is a convincing technique. It is more the belief that each of one has. I am more I believing person and I believe if it is meant to be it will be.
Tomorrow I have my onc appointment. One more step.big cyber hugs
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Thanks Cuculi! I do need to slow down and be patient and get hubby used to the fact that he gets to keep me awhile longer before I go adding a family member. I am just so happy that there is a possibility.
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Hi guys
I'm a first time poster, long time reader & follower of all your inspiring stories. I am 4 years post diagnosis and 3.5 years on tamoxifen. My breast cancer was caught quite early but because I was only 29 when diagnosed, they threw the kitchen sink at me in terms of treatment. I had lumpectomy, 3 surgeries to get clear margins, chemo, zoladex, radiation treatment and then of course tamoxifen. When I initially met my oncologist he told me 5 years on tamoxifen, no questions asked. But recently I have been to see another oncologist who is a lot more experienced and established and he said that in terms of relative risk, coming off tamoxifen now after 3.5 years would mean losing out on maybe 1% of added protection against recurrence.
I was 3 months from my wedding when I was diagnosed and it breaks my heart that my husband and I have had to watch all our friends having babies and enjoying the exciting times of being a new little family while we worried about mammograms and recurrence. However after my 4 year all clear mammogram, we made the decision that we would talk about perhaps coming off tamoxifen. But as much as it is thrilling to think that maybe we could start thinking about a family, the fear of whether I'm putting myself at risk is truly terrifying.
How have others dealt with this see-saw of emotion? I don't even know if pregnancy will happen for me, it's so hard to know how my body will react after all the treatment, but if it does happen, I don't want to not enjoy such a special time because I'm worrying about recurrence.
Any advice welcome xxx
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You could stop tamoxifen for pregnancy/breastfeeding if you still have a breast and then finish your last year of tamoxifen. My oncologist is letting me stop to try after 2 years and then 8 more years of tamoxifen (they are doing 10 years here now)
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Hi Cailin, I know what you mean about the worrying. I am older than you, diagnosed during my first pregnancy, at age 38. I did chemo and radiation, then 18 months on tamox. My doctor gave me the okay to try for baby #2 because I'm already 41. I read that at least 2 years of tamox is recommended before taking such a break so it's hard to know if I am making the right decision.
But more relevant to you, my twin sister was diagnosed at age 33 and got all the treatments you did. Despite being ER+, she opted not to take tamox at all. She had her first baby at age 37 and second at age 40. So that's encouraging right? I think that she (and I) learned that all you can do is live in the present. There are many risks in life but you still have to live it. Some days it won't bother you, and some days will be harder. But we carry on, what else can you do...
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Hello girls!
I agree 100% with Marlene 18. I love this forum, as I always say, because is so filled with hope, encouragment, love...
I have to do some tests... a possible bone mets in my left rib. I have been so positive since my diagnosis on May 2013 that I simply cant belive this. I will always follow this thread but I will take a step back for a while. I need to connect with my "spirtual being" and then look for more opinions and work on that.
I send all of you love and big cyber hugs.
Have a great weekend.
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Oh no Cuculi!!! I really hope it is not a mets!!! Sending your positive vibes!!!
Keep us posted!!
Hugs
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Thanks!!!!
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Praying for you Cuculi. Praying hard that its not mets. Keep us updated, you are not alone in this.
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I just passed my 2 year anniversary on tamoxifen, yay~!! I'm thinking of trying for a baby in Jan and hoping to get off tamoxifen in October. Three months to clear the system, right? Anyhow, I haven't discussed this with my doctor yet. Do you usually have to ask your doctor when you can go off of it, or can you kinda just let him know your wishes? Anyhow, I was wondering if there were any tests or scans recommended prior to trying to get pregnant. I should be getting my annual mammo in August. Anyone's doctors suggest anything else before getting the go ahead? I'm nervous, but excited at the possibility of bringing a new baby into my life....!
Baby dust to all those already trying~!! and love and prayers to cuculi.
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Its been almost a year since I have posted anything on here. at the time the post was about how worried I was that I hadn't had a period for a while (it ended up being 8 wks I think), but now almost a year on from that post I am back to let u all know that I am 5 months pregnant. so to those worried about irregular periods who are still on tamoxifen - perhaps that's what is causing the irregularities. some ppl hardly get them while on tamox. I was particularly worried because for the most part I was getting them fairly regularly, even though my cycles were longer than usual (about 5 wks) so to wait the extra few wks hoping that it would come felt like forever!! once I was off tamox it didn't take too long for my cycles to return to normal. there is definitely hope for those with this concern!!fight4two while its comforting to have our doctors on board with our decisions ultimately it is up to us. I told my onc I wanted a baby asap and after making sure i knew the risks and statistics he accepted my decision (was on tamox for 2 years). I know some ladies on here have had oncologists completely against the idea so they've found a doctor who is more on the same page as them and supports their decisions.
good luck.
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Thanks for the post. It was me that was freaking out about not having my second period post lupron and tamoxifen treatment. I ended up starting a few days late and am currently ready to start trying! Send me baby dust! As far as time, I was told 1-2 months off tamoxifen. I've seen various opinions. Good luck girls and Thank you angelbaby1 for a much needed success story!
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Congrats angelbaby!
Cuculi, how are you doing?
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Hi fight4two, my MO knew all along that I hoped to have another baby so she had recommended a minimum of one year on tamox. But I've read stories of some doctors being really discouraging about anyone who wants to halt the tamox before 5 years so hopefully that isn't the case for you. She had me get a CT scan though she acknowledged that was "controversial" for some reason (maybe because things can show up that might have been nothing?)
After stopping tamox in December, I've been trying for three months and no luck so far. Getting a little discouraged because I turned 41 last month... Not sure how long I want to keep at it, since I keep doing the math about how old I'd be at potential-baby's 10th b-day and such. :S
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Congratulations Angelbaby!!!
Baby dust to you Tatasister and Marlene!!! May you conceive quickly!!!
Cuculi, any updates?
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Marlene I was told that if I didn't ovulate on my own in the next few months that my OBgyn would induce it with...wwait for it....tamoxifen! I guess it's used in the infertility world too, is safe for bc survivors wanting to conceive and is given in a tiny dose to make you ovulate. May wanna check into it.
Hoping for good news from Cuculi on here. Playing for you!
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That's funny.
I was given Letrozole 5mg when I did a round of IVF before I started chemo.
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i posted this question on another board but found this one and figured id ask here too. I started taking tamoxifen Wednesday a week before that i had ovulated. My period is due in 2 days and i was wondering if you would get pregnancy symptoms while taking anti-hormone drugs? I havent been able to find answers to this question.
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Hey girls, just checking in! Just finished my 3rd period off tamoxifen. Send baby magic my way this month. @smgree, I would say yes you still would get symptoms. Tamoxifen only blocks the effects of estrogen on cancer cells, not estrogen itself. I always felt period symptoms while on it, so since period and pregnant symptoms mimic each other, I would say yes you would have symptoms.
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hello ladies,
I was referred to this thread and I'm so glad I was. It's so wonderful to find women experiencing the same things I am and who understand my feelings.
A little background. I was 26 when diagnosed in Nov 2012. 95% ER+, HER2-. We tried to get eggs for embryos but they couldn't get any so I have no frozen backups (doctors got timings all wrong for the cycle). I'd been on Zoladex since Dec 2012, my last shot wore off in April. I was on Tamoxifen between July 2013 and March this year. I've been asked to participate in a trial where they want me to try and get pregnant!! All my hopes and dreams might come true yet. I had a transvaginal ultrasound today as part of my follow ups and I have an AFC of 2 so far but they didn't say if this is good or bad. I'm still waiting for my periods to return. I'm trying not to Dr Google things as I know a majority of it is misinformation but I just want this so badly.
I'm slowly working my way through all these previous pages of replies and it's so wonderful to see so many successes.
xo
Kirby
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Baby dust to all of you ladies actively trying!!! I hope you are very fertile and get pregnant with no issue.
I just had my second period and still on Tamoxifen. This one was very light compared to the first one.
Kirboxx sending aunt flow (period) vibes your way!! May she pay you a visit asap!!
I will be cheering on from the sidelines for you all!
Anyone have any news from Cuculi
Hugs!!
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Welcome kirboxx! This is a wonderful group with great info. So glad I have all u girls for support!
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so probably going to sound very silly and I am going to try and get a referral to a fertility specialist but I have been having what I have read to be normal cervical mucus during a menstrual cycle but no periods yet, goes from sticky and thick to a few days later being very wet and almost clear to thicker and creamy. My last Zoladex was due in April but I'm still waiting for periods to return. Is this a sign that things might be starting to work? I had an internal ultrasound mid June as part of this medical trial and I had an AFC of 2 I'm hoping this is a good sign that I could be starting to ovulate again.
I'm laying all my hopes on this being the start of things as I have had such a terrible week emotionally.
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Kirboxx - my cm changed from being runny to the clear and thicker kind and I was wondering the same thing. Then it changed back to the thick white one and before my first period (after 8 months of chemopause) my mood was extremely bad. Then period showed up and everything went back to "normal". My hot flashes stopped 3-4 weeks before the period showed up.
Hopefully yours is in its way!!
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Hello girls!
As I always say, I love this thread! I have no news yet. But I have a feeling everything will work out. I will let you know. My prayers for all of you and the best vibes for all that are trying to get pregnant.
Cyber hugs!
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Hey ladies. So I'm finally over that 2 year mark of being on my tamoxifen, and had always discussed coming off at this time to try to have a baby. Likely going to do it soon... just looking for some words of encouragement from anyone who's been there! I'd be lying if I said I wasn't nervous and constantly wondering if I'm making the right choice. I wish there were more research to go on, or that I could see the future. But this feels like the right decision and I'm trying my best to just be confident with it and have faith that things will work out and I'm doing the right thing. Fingers crossed! If anyone has any advice/wisdom to share, would love to hear it.
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Hi Everyone! I have found this site so helpful in the past and this thread in particular. Thank you all for being so open and honest. Youngwithbc I am with you. I would love some advice / wisdom. Actually, what I would really like, is to hear from some women who have had a baby after BC and are still kicking butt a few years later cancer free
Very brief background so you all know where I am coming from. I am 3.5 years out from initial lumpectomy and 3 years on tamox. I ended up having a double mastectomy after chemo (personal choice. not required). radiation too. I was stage 2a. 1 positive node. highly er positive. Here's what makes me different (I think)....I was diagnosed 18 months after my daughter was born and 8 months after I stopped breast feeding. It's really hard for me to put that aside when thinking of getting pregnant again. It's sort of re-traumatizing in a way. Will this happen again???? and all that. I did IVF before chemo and we have 4 day 5 embryos which is awesome. Periods came back, but fertility dr says my eggs are probably crap now. SO here we are. I have an amazing, perfect, 5 year old daughter. I am so torn mentally, spiritually and financially with the decision to have another one or not. Gestational carriers are EXPENSIVE. The plan was never to have an only child but I'm at a place where it won't destroy me if that's the outcome for our family. It might actually be really good! Am I being un-grateful for wanting a second sometimes though? Am I crazy? OR am I letting the fear associated with cancer win by NOT having a second....I have great and supportive friends and family but they don't get it. Any words of wisdom appreciated from some of you ladies that do get it. Oh and ps- I was told I only need to come off tamox for 1 month before the fertility dr would start "the process" ! Oh and also my onco supports this. She wishes I would wait 5 years on tamox so I "fit in the box" but gave me the ok to go ahead now if I want....decisions, decisions..... 0 -
it sounds like we need our friends on here that have successfully had babies to chime in. I went off tamoxifen April 1St. No baby yet, but my periods are super regular. I've also had positive ovulation tests. I was on Lupron through chemo, so hopefully it worked. Baby dust to all!
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