Coming off tamoxifen early to have a baby
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Hi all. My amazing wife was diagnosed with BC a couple months ago. She is having a BMX in 10 more days. She is 36 and we had been planning to try and get pregnant this year before she found the lump. We met with the fertility doctor yesterday, but are still unsure about what to do. Obviously, the risk is our main concern. We didn't really get any numbers or success stories from the fertility doctor that we were hoping to hear. She seemed to be suggesting that we use a surrogate, but we can't afford something like that. We are not even sure if we can afford to go through the freezing of the embryos and all that, but we want to look into it as much as possible before giving up completely. My wife is ER+/PR+/HER-. So the hormone issue is a huge one for us. She is already on Tamoxifen because the surgery has taken so long to get scheduled. We kind of feel pressure to decide soon, but we don't know what to do. We are afraid to spend huge amounts of money only to end up never using the embryos. Any stories or advice is welcome. Thank you.
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Hello soscaredhubby. Everytime I hear one more BC diagnosis story it mades me so sad that I want to cry. Probably it happens to a lot of us.
I was too diagnosed at 36 on May 2013, I am 38 now. I had a 2 year old child,when diagnosed but I still understand you as all in this forum will. Besides my mother in law and father in law passed away a couple of years ago : both from cancer.
This thread is an amazing place to chat and get lots of info that I believe is given from the hearts of all of us.
Regarding your question, you will probably receive different answers and from all of what I have been reading the final decision will depend on you and your wife. Most of us here are willing to give it a try because we want so badly a child (first or second).
My case is that I have an egg frozen (I think that is how you say it??) but havent used it yet. My last bone scan had some suspicious "colours". Only a biopsy can confirm 100% bone mets. 3 months later a second bone scan is exactly the same. So I just believe everything will turn out fine and hopefully try for a second child. Right now I am still taking care of myself body, mind and soul. I have been reading a lot and learning a lot from all these lovely women.
So I would freeze embryos but if the budget doesnt allow it then it cannot be an option. I still dont know if I will use my egg but it gives me a hope, and that is very nice for me. I know that some girls here used Zoladex...seems it helps to protect the eggs (or smthg like that) if you want to get pregnant afterwards.
The treatment is very hard, in particular emotionally... there are lots of threads to talk about it. Feel free to PM me.
Hang in there... keep the positive attitude ...cyber hugs
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Cuculi: Thank you for your comments. I know what you mean. This world is still pretty new to us, but I have read so many stories on here, and it is so sad that so many wonderful people have to fight this horrible disease. A few months ago I would have never imagined what our reality is now. We now realize that we will be in this fight for the rest of our lives, even long after my wife beats this. We plan on beating this together, but we know we can never walk away from the awesome community of cancer fighters and survivors. We have received great support and plan to pay it forward in the future.
Thank you for sharing your story. I hope everything works out for your second child. At this point I wish we would have had an accident years go when we didn't think we were ready. We are leaning towards freezing the embryos and waiting to see what happens. It's expensive, but ultimately it keeps our options open, which is huge. We are looking into ovarian suppression meds that will protect eggs during chemo as well. The trick is if we can get insurance to cover them as a hormone suppression.
I know my wife has a rough road ahead. We have made a lot of plans this weekend since it's our last weekend before the battle begins. I'm still really scared, as is my wife, but I have to believe we are going to beat this.
Cyber hugs to you as well. Wish you the best!
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Soscaryhubby, sorry to hear about your wife's diagnosis.
I was diagnosed at 33 after a miscarriage and my diagnosis and ER/PR+ % was such that I can't carry a pregnancy. We did a round of IVF and have some embryos that we are hoping to start using next year. The process is expensive but Google as there might be some grants that you might receive to help with the cost.
Also, check out young survival coalition as there are some success story of women with ER/PR+.
Good luck and this forum is great if your wife needs some support as she goes thru her treatment!!!
Hugs!!
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Hi SOSCAREDHUBBY,
First of all, I'm sorry you're going through this, not too long ago I was in the exact same place you are in now. There are a lot of organizations which help to fund IVF for Cancer patients, especially in the states. I only found out about them after the fact but wish I had known before. I believe Livestrong and Rethink Breast Cancer, and there are many more which have programs, Google and lots of research and you will for sure find some help. If you can get help with the finances it is worthwhile to freeze embryos, your wife is 36 and her egg quality is not going to get better, especially not after surgery and chemo. Oncologists are amazing people but they are really focused on getting the Cancer out, they don't always talk you about setting up options for once you're healthy again. You need to be proactive and do your research. You will find the path that is right for you.
Exactly 2 years ago this Septmeber I was diagnosed, and now I have a surrogate that is 16 weeks pregnant…it has not been easy, in between that time I've had 3 surgeries, 6 months chemo, 1 month radiation, hormone therapy, and then we had 3 failed attempts with our surrogate, but here we are today finally with some good news and it feels SO GOOD!
Hang in there...
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Hi everyone!
I was diagnosed with BC in 2012 when I was 27 y.o. Have ACT chemo, no radiation, and bilateral mastectomy with reconstruction. Since March 2013 I've been on Tamoxifen and Lupron. My OC says she's ok with me coming of the meds to start trying for pregnancy, but ideally she would love to have me on Tamoxifen and Lupron for 5 years. I did freeze my eggs prior to starting chemo and I do consider surrogacy, but it's just SO expensive!!! It will cost me about $100,000 with all the medical and agencies fees and I just don't have this kind of money, so I do incline towards carrying a baby myself. I did a lot of research regarding organizations that might help to fund IVF, but the one who actually helped with money was Livestrong (they paid almost $5,000 to help with egg freezing).
So I guess I have the same question as many others here - do we have women who successfully carried a pregnancy after 2-3 years on Tamoxifen and are well and healthy?
Thank you so much for all the help!
Best luck and great health to everyone!
Tina
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Hi Cuculi! I wanted to see how everything was going for you and if you proceeded with trying to get pregnant
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Hi all. Well, we decided to go ahead with the fertility plan with help from Livestrong. But, I'm not sure if we will follow through, as my wife's double masectomy was yesterday and the doctors found positive nodes. It sounds like they are expecting there to be multiple positive nodes. I'm not sure we want to chance pumping her full of hormones to get the eggs if she's going to be a higher stage.
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hi Soscaredhubby,
I had 8 positive nodes and 5.4cm IDC and 5.8cm in situ, ended up with a higher stage than I thought I would be.
I had my single mastectomy and did the IVF round right after surgery. I was worried about the hormones as well but I was given a high dose of letrozole as a balancing med for the increase in hormone. You guys only need a round to harvest the eggs. If you go to the clinic that deals with cancer patients they will know to give the letrozole. Ask a lot of questions about the impact of the hormones.
I thought that once the cancer was out of me, I was cancer free and any remaining cells would be dealt with at chemo/radiation time.
Good luck!!
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I sent you a private message soscared hubby. It's got my number in it. Sometime it's just easier to talk it over. She has more options. I'd love to help her on her journey.
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tatasis...
I have a good news story!
Finished (started a break from) two years of zoladex on 25 Feb, tamoxifen on 25 March... To TTC!
At 37 had no idea if fertile or if cycles would return...
Went to acupuncture every week, got first period mid June. Second period mid July. Then we stopped using contraception. Now I'm six weeks pregnant. Holy shit I can't believe it!
Good things can happen. Have an early scan next weeks and hoping like crazy for a heartbeat.
Baby due 20 April. Oncologist says no breastfeeding and back on zoladex and exemethzane early July.
I'll keep you posted along the way.
I hope this brings some hope to everyone following this thread.
XXX kiwikid
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Lolis: Thank you for sharing that. We were kind of in the mid set we would go through with it if she was stage 2, but not stage 3. Now it looks like my wife's numbers are going to be similar to yours. We took all the preliminary tests and filed the paperwork. My wife questioned if we were even fertile because we married young, and haven't always been that careful, but the fertility docs say we are good to go. It's good to hear stories like your who went through with it.
Oh and Stephaniegee: Congrats! I think we will definitely have to go the surrogate route if we continue. I was leery at stage 2 even though my wife prefers to carry it. Now at this stage, I think we have to see if it's possible to arrange a surrogate.
tatasister10: Thank you! That's awesome of you. I passed your message on to my wife. She has been tired and a little loopy from the pain meds recently, but I think it would be great for her to talk to someone like yourself.
kiwikid: That's amazing! Congrats!
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Kiwikid, just wondering why your Oncologist says no breastfeeding? Even a month or two is so beneficial to the baby, and it's also known to reduce the risk of breast cancer. So this has me very puzzled
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Hi everyone. I've been reading the posts here for a while. What a wonderfully helpful and supportive community!
Before my chemo in 2009, I had embryos frozen with my boyfriend at the time. Bad decision. I was extremely vulnerable at the time - because of my cycle and my impending chemo I had a very small window (48 hours) to decide whether or not I wanted to do the fertility treatment/egg retrieval. The fertility doctor strongly recommend freezing embryos not eggs because the success rate was much higher with embryos. But that boyfriend turned out to be very unsupportive and bad news all around. I also had no money to pay for the annual storage. So (with his consent) I donated them to science in 2010.
Five years forward: I've been on Tamoxifen for 5.5 years, am dating someone wonderful - we just moved in together, and he does want a family someday (soon?)
The main issue is that my oncologist is not on board with coming off Tamoxifen. In fact she is not a huge fan of patients with my history getting pregnant ever. But she is okay with me getting my eggs tested to see if they're viable, in case I find a surrogate. When the nurse came in to give me the referral info for that, she said 'I know your Dr. is more conservative, but I've had several patients go off it to have a baby, and they're fine.' SO MUCH CONFLICTING INFORMATION!
I'm approaching 38 and am not sure I want to wait until 42 (ten years of Tamoxifen) to start trying, when my eggs will probably be dust.
Thoughts?
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Tina13,
I was also diagnosed at 27 in 2009. I have not frozen eggs. Now I have completed 5 years of tamoxifen and will try to conceive soon. I was just checking successful stories and saw this thread. I am also asking the same question with you:
Do we have women who successfully carried a pregnancy after 2-3 years on Tamoxifen and are well and healthy?
I just was kiwikid's post and was so happy to see it!
I am very new using this website. Do you think we can start a new thread that only has successful stories women having babies after receiving TAC and tamoxifen?
Wishing best to all!
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AzraNur and operalass, welcome to BCO, and thank you for sharing your stories. You may find some helpful information on our section, Fertility and Pregnancy Issues During and After Breast Cancer. There is a lot of things to consider, and we are glad you are here to discuss with others. Of course, you may also start a new thread, AzraNur.
Warm hugs to All!
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Quick question to those who did IVF after breast cancer. Those of you with hormone sensitive Cancers that did IVF to implant your embryos, did you have a different medical protocol? I know there are lots of hormones and medications to help improve chances for transfer (i.e. progesterone) how did you manage that? Did you have less chance of it working because of a different protocol?
THis came up in a conversation I had with friends, was wondering about the answer.
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Hi! Just wanted to see where everyone is at in the process of coming off tamoxifen to ttc.
I am about to take that step. Nervous but excited. A few questions for those who have walked this path...
-Did you take prenatal vitamins starting right after going off tamoxifen and before ttc? Any extra supplements as well? I've read so much conflicting info about this... some taking regular multis, some prenatal, and some just folate and vitamin D. Any opinions?
-How long after stopping tamox until your period regulated? Mine are super irregular/pretty much non-existent right now.
-Anyone not do fertility testing before trying? That's the route I'm going to go... i have no idea if my fertility was compromised by chemo, but have been told by my onc there's no real point in testing until I try for at least 6 months, and then see if there's a problem if it's not working at that point. I know other women who had horrible results with their fertility testing post-tamoxifen/chemo... and then got pregnant. So didn't want to put myself through that stress when I know I'm just going to try anyway.
Any other thoughts/advice? Hope we can keep this thread going!
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Bump!
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Hi there all!
I am new to site and looking to see if anyone has any good advise or information on taking tamoxifen. I was diagnosed with what I believe was stage 4 breast cancer when I was 21 yrs old. My doctor recently told me that they want me to now stay on these drugs for 10 yrs! I'm kind of freaking out since they only told me 5 yrs originally, I'm going on 3 yrs of treatment now and was so looking forward to be off of the meds soon. I read a study that said alot of young women come off tamoxifen early for fertility reasons, although im not sure I want/or am able to have children I think being on meds for 10yrs is a little much even if I wanted to have children I would be close to 40 by the time I come off the meds. I'm not quite sure what I want to do and figured I would try and see what i can find out on here,
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Hi pitbullgrl! Welcome to Breastcancer.org. While we're sorry for the circumstances that bring you here, we're glad you found our community. We hope you find the support, advice and information you need here.
The Mods
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pitbullgirl, my doc also says 10 years on Tamoxifen. That is the new guidelines. I have a close friend who died from BC this past July. She took Tamoxifen for 5 years, had a recurrance in year 6. I'm terrified not to take it
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Hi All,
It's been a very long time since I last posted on this site but life for me has been very busy.
Here's a little run down for all the new posters...
I was diagnosed 4 years ago, did 6 rounds of chemo, 1 month of rads then 2 and a half years on tamoxifen. I decided, after lots of research and talking to doctors, that I would have a 'baby break' in march 2014. I was told not to start trying for 1 month, so we started ttc in April 2014 and fell pregnant straight away, but sadly lost that pregnancy in June 2014. Then I had the devasting news that my dad passed away (suddenly) in August 2014 so baby making was put on hold. We then fell pregnant again in October 2014. Had an amazing pregnancy, very different to my first 11 years ago. And I'm so so happy and delight to announce that on 7th July 2015 (only 1 day late) I gave birth to a beautiful, healthy baby girl weighing 7lb 6oz. She is absolutely amazing and I'm doing great. I managed to breast feed for 6 days from my good boob (a lot longer than I anticipated) but got very sore as she couldn't get any from my bad side. Miracles really do happen... So to you ladies trying or hoping to try in the future... Don't give up and stay positive, believe in yourself.
I've just started tamoxifen again to finish my 5 year corse (only 2.5 years left) and then we may try for another
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Hi all of you!
I love your posts! Congratulations Rutts!
I will start a new treatment... for bone mets... the onc told me to cheer up and that there are a lot of treatments. So I will focus on that.
The best for all of you!!!
Good night!
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congratulations Rutts.
Oh no Cuculi, so sorry to hear about your mets. Sending you positive vibes your. Hope you get to a NED situation!!
Hugs.
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I haven't been by in awhile but here's my update too:
I was diagnosed (Stage 2) at 18 weeks pregnant, carried my girl to term whilst doing chemo (AC), then took tamox for 18 months. Then we were trying for 7 months and finally got our positive pregnancy test last month so I'm now 6 weeks pregnant.
I might have taken the tamox a bit longer but I turned 41 earlier this year so I didn't want to wait and my MO said okay. I did not take lupron during chemo since I was pregnant already. My periods were pretty normal after chemo and during tamox so I figured my fertility might be somewhat intact. I did not get tested to verify this, just hoped it was true. This year of trying, I have been taking methyl-folate, fish oil, vitamin D, reishi mushrooms (for immunity support), and iron after I tested really low. I switched to a pre-natal vitamin now.
And another story for comparison, my sister was diagnosed at age 33 and did FEC with no fertility preservation. She opted not to take tamox though, and her kids are now 3 and 1...
Congrats stephaniegee and kiwikid, thanks for sharing your good news!
Cuculi, I'm so sorry to hear your update. You are always such a positive voice on this thread!
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That's great news Kiwikid! Congratulations.
Did you feel that acupuncture helped with the return of your period? I'm in a similar time frame as you; I stopped zoladex and tamoxifen in Feb and am still waiting for my periods.
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I am posting this as an update from my previous post. We went ahead with the IVF process. My wife took the hormone shots for a little over a week while also taking letrozole. They were able to get 17 eggs. 12 of which were large enough for fertilization. 11 of the 12 became embryos. We are still awaiting word on how many of those will make it to the freezing stage, but it's looking good so far. My wife starts chemotherapy next week. Good luck to you all.
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that's a great update! So happy for you and your wife!
I was told that 30% of eggs retrieved make it to the 5 day stage. I had 15 eggs and have 6 embryos. Don't forget to ask for a picture of the embryos. :-)
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good luck to your wife with chemo. the chemo threads are very useful.
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