Coming off tamoxifen early to have a baby
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Lisa,
Congratulations!!!
such fantastic news!! It is so so encouraging to see the person who began this thread less than 2 years ago is now the proud mother of the most beautiful little boy!! All of your messages and indeed everyone elses keep me and everyone else TTC going. You must be absolutely exstatic!!! So delighted for you and your husband. Hoping to share a similar thread with you all in the next year - fingers crossed!! Welcome to the world little Finn xxxxVelo - my heart goes out to you. I was 33 when I was diagnosed and didn't have a partner but i'll be 38 in a few weeks so we are the same age...for me there was no option - chemo is what I was offered and told that if I said no to it i would not survive. I always feel that chemo is like an insurance policy - not very nice at the time but worth it in the long run - however it's hard for me to know how i'd feel if I was 38 then. What is your onc telling you? Is chemo a most have for you? I agree with Sakura though - I had zolodex and with all the tests i've had done it looks like it did it's job so ask about that - i'm sure it must be an option and I can't recall any side effects with it. Keep us posted x
Love to all xxx Tess
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Hi Lisa,
Hope you had a great time at the Olympics! How was it?
Thanks for the info about how your first IVF went. It does sound like there is still hope for me! I think its too late for me to choose the Zolodex and chemo together. I'm already at the outside of when the oncologist wants to give chemo because of the delay with the egg retrieval and my indecision. The Zolodex is supposed to be given two weeks before the chemo. But for you, they continued the Zolodex after the chemo as well? (until you stopped to try IVF again)
Tess - in my case the improvement odds with chemo are small, and one of the alternatives which they offered, but don't think its quite as good would be to take Zolodex and tamoxifen (no chemo), but better than tamoxifen alone.
I'm leaning towards the chemo since its the recommended option and also shorter than the course of Zolodex (which they recommended for three years).
Zolodex + chemo together aren't really standard here. My fertility specialist thought there would not be harm in trying but it was unlikely to work. Usually its just chemo.
Tess - best of luck to you!
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Hi Tess, thanks for your lovely message, I was really touched. xx
Hi Velo
Breast cancer treatments are so confusing, not least because different doctors recommend different things. I actually did not have zoladex and chemo together. I just had chemo. My oncologist felt that the evidence that Zoladex was helpful to protect the ovaries was negligible (he's a hot shot Cambridge Uni researcher here in the UK). That said, I've since heard of many women who have followed a combined zoladex/ chemo regime and new evidence is emerging all the time. So the good news is that my fertility got through chemo intactish without zoladex, so the same may be true for you. I took zoladex with tamoxifen when my ovaries were shown to be active post chemo to reduce my oestrogen levels. I'm surprised they are offering you chemo as an alternative to Zoladex and Tamoxifen, here having tamoxifen for 5 years post chemo is standard, even for cancers that are weakly hormone sensitive. However, having a tamoxifen break after a year is becoming common practice for women who want to try and have children. All the very best with your decision, it's such a tough thing to go through.
Lots of love
LIsa xx
PS the Olympics were great!
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Thanks Lisa! Good to know that there's hope without the Zoladex ahead of time! Keep your fingers crossed, I'm having the chemo tomorrow. No time to try the Zoladex ahead of time, I am already 12 weeks post surgery. But I have heard the negligible as well.
Chemo is not being offered as an alternative to tamoxifen. They are still recommending 5 years of tamoxifen (hence their really skeptical ideas of any fertility) but I was thinking like you of trying after 2 years max to have a baby. (if I still have any eggies left! Or possibly with a donor egg, then I can wait longer but I don't really want to)
The choice was just between the zoladex or chemo. They don't seem to use zoladex very much here, and the option of taking both if my ovaries are still operational was not discussed.
Best wishes to you and Finn!
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Hey All
Hope ye are all keeping well - espically olympic baby Finn!!
I had my D&C and laperoscopy to see how everything was - so my womb is fine as are my ovaries and uterus but he reckoned that there is a partial blockage on my left tube. So he says to try away for 3 months and come back to him in november if not preg. Trying to stay hopeful. Apparently the next step would be to take a medication that would incourage ovulation but I wonder would they not be keen on giving a drug like that to someone post BC?? Has anyone tried such a drug? Possibly Clomid or the like. My friend is a nurse and she says loads of women get pregnant with one blocked tube.
Velo - Hope the treatment is going well for you - thinking of you x
Tess
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Dear Lisa,
I just stumbled across your thread while looking for information on coming off Tamoxifen early to try for children and had to join the forum to send you a huge message of congratulations and a thank you for giving hope to other women in our situation.
I was diagnosed last year with a scarily similar pathology to you! I was 33, had just moved to the countryside with my husband of a year and all ready to try for children and then got diagnosed. I wasn't able to freeze eggs before starting chemo as my tumour was too large and ER+. And had a horrid (and expensive) experience after chemo when a fertility 'expert' did loads of tests and told me I had been left menopausal and infertile by the chemo, but when I asked him if it could be a temporary menopause (I knew I was menopausal! I hadn't had a period during chemo and was hot-flushing all over the place) and whether he'd expect to see any ovarian follicles in a woman who'd just finished chemo he started stuttering and then admitted that he'd never dealt with anyone who'd had cancer before. So I got my GP to transfer me to someone in London who had, who said the tests I'd had done wouldn't have been accurate a couple of weeks after chemo. My periods then returned and I am keeping fingers and toes crossed and loving stories like yours which fills me with hope.
Many, many congratulations.
x
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Ski bunny! Defiantly can't go by those test with having had chemo my obgyn told me it takes a while for your ovaries to wake up! And even once your periods return it takes a bit to start to ovulate again! I took one of those fsh over the counter tests early on and it said I was infertile also tried ovulation kits and those too seemed to tell me I never ovulated and just cost a lot of useless money. Anyway I just dumped all the wonder and tests and did acupuncture and got pregnant with twins naturally! I'm four months pregnant there is so much hope and your very young!!! Keep us posted this is an awesome thread gave me so much hope when I started trying!
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Aaaaw! Amazing! Loads of congratulations to you too.
I only started Tamoxifen about 10 months ago...so have a while to go before I can think about stopping and trying for babies. It's so difficult. I feel that my life is on hold while all of my friends and siblings are having babies and moving on with their lives. But feel guilty for just wishing my life away when I feel I should be making the most of every second following my diagnosis. Have never been very patient...!!!
Thank you for sharing your experience. So good to hear happy and positive stories!
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Hey, this is such a sweet threat. I am gonna join in, even though I have just been on Tamoxifen for 1 month so. Problem is, I already want to stop for babies!! I totally relate to what you are saying skibunny about life being difficult and conflicting!!!
I am 33 now, diagnosed at 32. I did chemo and before that, IVF preservation, but that was not as successful as planned... they harvested 12 eggs but only 2 were fertilized and frozen as embryos. I am so worried that 2 is not enough and that if I wait the 5 years of Tamoxifen I will be too old to conceive naturally. I also have an added problem of carrying the BRCA1 mutation, which basically means that my ovaries need to be removed around age 40 to prevent Ovarian cancer...lots of women do it before 40, but 40 is the recommended time to do it.
I have been in chemo-pause for the last 3 months and I am going to go to the fertility clinic and see if they can tell how my fertility has been affected by the chemo...is 3 months enough to be able to tell the impact of chemo on the ovaries?
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Hi Cucho,
I saw a fertility expert 2-3 weeks after my final chemo and that was definitely too soon, but the cheeky consultant charged me loads of money for various tests and concluded I was menopausal but then admitted that he couldn't tell if it was a temporary one caused by chemo - or permanent. So, I basically went through lots of tests and upset to find out what I already knew!! The lack of periods and constant hot flushes told me enough! I didn't need all of the tests. I then got referred by my GP to a fertility expert who sepcialises in cancer patients. I saw her about 4 months after my final chemo (at which point my period had returned - but obvs doesn't mean I'm ovulating/fertile) but she recommended waiting for another few months until I went back for further tests. However, I've decided to wait until next year when I've done 2 years of Tamoxifen, mainly as I just don't think I can cope with anymore emotional extreme ups and downs at the moment. I'm keeping my head down, plodding on with Tamoxifen and going on some nice holidays while I have the chance!! (Off to Zanzibar on Saturday!).
Hope your appointment goes well. I'd be really interested in hearing what your clinic say and what tests they recommend if you don't mind sharing.
Sorry for hijacking your thread, Lisa! But thank you, thank you for letting us join in...
x
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Hi Cucho,
I would definatly NOT go get tests done until your period returns and you are young it will return!! If you go now they will just tell you you are infertile but its a chemial infertility and those tests wont show the differance just give you reason to loose hope that is not necessary! i didnt get my period back fully until 9 months after chemo. about 4 months after i started to get really weird skant periods that i know were not really a period but some sort of uterin shedding which probably meant my hormones were regulating. I also did herceptin, and it was once i was done with that three weeks after my last one, regular periods started, my onc told me wait 6 months to start trying, and i got pregnant on the second month trying with twins. im 17 weeks! also i was offered tamoxifen but was weekly positive so i decided against it my tumor was also very small so i decided to forgo it all together. I do know that tamoxifen will also make any fertility test show false bad news. I would say talk to you onc and your husband about what you feel is the reasonable time for YOU to stay on tamoxifen and then just try to relax and know there is hope at the end of the tunnel after that time period is up! i know how hard it is, i had days and nights of worry and fret of not having mroe children, i think that scared me more than cancer at times! but i always knew in my heart that i would so i let myself cry feel sad when yet another friend told me they were pregnant and then moved on to my waiting timeline and had faith! its hard to wait i remember one day i was in Target and started balling bc i saw a pregnant girl who looked my age, i was so angry that i had breast cancer and couldnt be pregnant at the time. it sucks!! but there is hope try to get yourself a time line so you can see the light at the end of the tunnel and forgo the tests right now, all it is going to do is frustrate you! i know what you mean though i searched and searched the internet trying to figure out if i was going to be able to have another baby but look at this thread....YES It is possible!!!! give yourself time to heal get through the rest of your treatment!!! take care! Jen
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Thanks so much for these tips and encouragement. I am just 2.5 months post chemo, and I also have another 9 months of Herceptin, so I clearly need to be patient and put baby ideas into the long-term picture. I keep hoping for research which will show us that we can can get the same benefits from Tamoxifen in 1-2 years, rather than having to take it for 5 years...
JP-Congratulations, these type of stories about post-BC pregnancies are really nice to hear.
Ski-Zanzibar is awesome, I was there a couple of years ago!
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Zanzibar was awesome!
My periods have been regular all the way through Tamoxifen (have been on it for 11 months) but am now 3 weeks late. If they've stopped is there still a chance they'll come back once I stop Tamoxifen? Or could that be it...?
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Hi all,
A long post from me today because I've been absent for so long. It's amazing how much time little Finn is taking up. He's changing every day and has just started to smile at us which is just lovely.
Hi Hadley - Thanks very much! He's called Finn. There's no particular reason, we just liked it.
Hi Velo - how's it going with your treatment? Has the chemo been ok? How're you bearing up?
Hi Tess, I hope your decision making is going ok. I've no experience of your particular situation, but have also heard of women getting pregnant with just one tube in action. You just need one viable egg. Good luck!
Dear Skibunny, what a lovely message! Thanks so much. I cannot believe the experience you have had with fertility specialists. It's so shocking that they did not realise that chemo would temporarily put you into menopause but that your periods return. It makes me realise how lucky I have been with my treatment. I was advised that no FSH test would be accurate and had to wait till I came off tamoxifen before I could test my ovarian reserve. And that test wrongly showed me to be infertile. So tests just aren't great indicators in our situation of whether or not we can get pregnant. At the age of 33 you should have a much higher chance than I did of being fertile. I'll be keeping everything crossed for you and wish you the very best of luck. It certainly is possible.
As for hijacking the thread, feel free! I started it so I didn't feel alone and I'm just pleased that it can do the same for other people!
Oh and my period stopped with tamoxifen and came back about three months after I came off it.Dear Cucho
At 32 your chances of your fertility remaining after treatment are good. I was diagnosed at 37 and conceived using my own eggs (just!) last year at the age of 40. Yes the odds aren't wonderful, but it is certainly possible to get pregnant naturally in your late thirties after chemo. It's a very tough situation to be in, I found the waiting so hard when I knew my fertility was declining by the minute. I'm not sure how valid any tests might be if you are still on tamoxifen. They did one test on me which I think (I could be wrong) was oestrodial because FSH would be affected by the drugs I was on. I hope they were helpful at the clinic, you need to prod those Doctors to use their brains and think through the tests from first principles otherwise they'll just default to the normal tests which may be inappropriate.
I just read Jen's post from September 5th. That's JUST how I felt. For me the fertility issues were in many ways harder to deal with than the cancer. I think we underestimate how difficult the whole thing is.
Jen, I hope your pregnancy is going well, how are the twins?
All the best to you all
Lisa xx0 -
Cucho: I'm another one who says don't worry, your periods are highly likely to return! You shoudln't conceive until Herceptin is done, so wait at least until then. A girl in my chemo group conceived 8 weeks after her last herceptin and her healthy little girl is nearly 2 now. If you are in chemopause then your ovaries are shut down at the moment and that is what any test would show, so I recommend you wait until your period comes back. For me that was 6 months after my last chemo.
My oncologist and fertility doctor both encouraged me to do at least 1-2 years of Tamox, as they said I would still get some benefit. But for me even that was too long and so I decided to reject it outright. Everyone is different.
Lisa lovely to hear that little Finn is starting to smile! I hope you're enjoying every minute and that you're getting some sleep too. How did breast feeding work out?
All I hope you can all take encouragement from the good news stories that babies after BC ARE possible. Like others have said, the risk of never having a baby was the worst part of cancer for me: my lowest point was the day I found out my egg harvesting had basically failed and I had to face chemo with no safety net. But it ended well for me and I wish you all such happy outcomes as Lisa and I have had.
Rachel xx
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I love this thread. It has given me so much hope. Thank you. I felt completely in limbo before. I look forward to following your little ones development. And hope to be able to share good news of my own one day... X
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Twin update!!!! I'm halfway 20 weeks and HUGE! I'm all belly but holy cow my belly is huge! I actually got asked if I was due soon by a stranger the other day had to explain there is two in there! I'm happy to say I'm feeling like a human again no more morning sickness the first 16 weeks were awful! I now know why.....these babies sucking the life out of me are two little GIRLS!!!! I totally was not picturing two girls but I'm trilled! I was very nervous at first of course my mind goes to breast cancer and fear for them in the future but all my genetic testing is negative so I'm going to try to focus on environmental changes I can make for my girls and lots of fundraising for more research! I will continue to keep you all posted so far the dr says the twins look perfect and are doing great!!!
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Twin update!!!! I'm halfway 20 weeks and HUGE! I'm all belly but holy cow my belly is huge! I actually got asked if I was due soon by a stranger the other day had to explain there is two in there! I'm happy to say I'm feeling like a human again no more morning sickness the first 16 weeks were awful! I now know why.....these babies sucking the life out of me are two little GIRLS!!!! I totally was not picturing two girls but I'm trilled! I was very nervous at first of course my mind goes to breast cancer and fear for them in the future but all my genetic testing is negative so I'm going to try to focus on environmental changes I can make for my girls and lots of fundraising for more research! I will continue to keep you all posted so far the dr says the twins look perfect and are doing great!!!
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Thanks everyone for your replies and support
So the fertility doctor is going to check my "ovarian reserve" next month- this is apparently different from if you have your period or not, and it is not affected by tamoxifen, and according to the doctor, it is the best and quickest way to check as to how chemotherapy has affected your fertility (as opposed to waiting for your period to come back, cuz this will not show you if you have considerable amounts of eggs left or not). Did anyone get ovarian reserve tested before? It is so extremely frustrating not to have clear information on these important matters!
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Cucho - I had my ovarian reserve tested and an internal scan and paid for the privilege to be told that I was definitely infertile. My world fell apart but knew it was something that i'd wanted to know the answer to so I could deal with the consequences. I came home and cried and cried and that was when I decided to quiz the fertility consultant on whether chemopause could affect the results etc. He said no, and that once you have no eggs left and you're in the menopause, that's that. I then asked him how many young women with cancer he'd dealt with. The answer was zero! A week later I got my GP to refer me to a centre that specialises in women with cancer and the specialist there said that it had been too early after chemo to check my ovarian reserve and that the test wouldn't have been accurate. She did explain why in more detail...but can't really remember what she said. Combo of chemo-brain and being so upset. So, I don't know if I've been given the correct info. Like you said - it's very frustrating that there aren't clear guidelines but if the bottom line is that they just can't tell soon after chemo, trust me, you do not want to go through the emotional rollercoaster I went through spending days grieving for my fertility only to find it might or might not be the case. I'd quiz them before you have the test done.
JPMercy - twin girls! How amazing. Do you know if they are identical or not?
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His girls, the twins are not identical they are in separate sacs and separate placentas and when we found out it was twins my ultrasound to my ovaries showed two corpus luteums anyway Cucho I knw you want answers the answer to the what ifs i completely understand I was in your exact position but your also on herceptin and tamoxifen and your hormones are All over and your ovaries are still asleep from chemo. Your young which is bitter sweet, sweet bc you have a great chance of coming out of this fine but bitter bc you should not be dealing with this and I know the feeling of those around you not having too its heartbreaking and sometimes you just want the fear of the unknown to go away and and you want answers but please understand that more than likely your test will come out bad and it will be a false negative I remember I searched high and low trying to find out stats and looking for answers but really all your body needs is time I took one of those home fsh tests and it showed poor ovarian reserve and it took 9 months for my periods to be regular. Even my acupuncturist and gynecologist both said your body needs time you will get false negatives sometimes fertility specialists are so all about the numbers and their damn tests and are not prepared to deal with woman with us or look at our big picture! Please feel free to PM me or we. An even chat on the phone I know how you feel hang in their the waiting game and few rod the unknown is the hardest!!
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Also my acupuncturist and obgyn both said once I am cleared to try to wait three months before doing tests i got pregnant on month two but i I would have waited that long it would have been a year and a half since my last chemo so your body needs time
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I only took Tamoxifen for six months, but I stopped this April to try and get pregnant. I was highly ER+ so I really feel scared about my choice, but do feel like I'm making the right one. I've alwayls wanted to be a mother.
Once I try to have kids, I'm totally going back on the Tamoxifen to prevent this beast from coming back.
I feel like this disease has just made me so fearful about everything, but I have to try for the future I want, right (she asks rhetorically)....?
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BoomersMom - I hear you. I stuck it out with Tamoxifen for 4 years but even then it is a tough call. I came off it in May and gave myself until sept to start trying so it's early days. I turned 38 recently so hoping and prayer it happens for me. Fear is a huge thing post cancer but I guess as time goes by it gets slightly easier and I guess when being a mother is something you really want you just go for it. I think we all so deserve to be mothers - we've had our downs so now we are ready for the ups!!
Are you trying any alternative treatments? I'm doing accupuncture once a week and yoga. I read a book called "the fertility code" recently so i'm taking lots of supplements right now as well, vit c, d, e, zinc, selenium, royal jelly, folic acid, omega 3 6, spilrulina. Due back to my specialist next month to start on clomid if not preg by then. Best of luck to you on your journey x hope everyone else is doing well also both those trying, those thinking of trying and those expectant ladies!! much love to all x0 -
Hi Rachel, I managed to breastfeed for a month, topping up with bottle-feeding. I've now stopped as I'm back on the tamoxifen but am pleased to have had the experience of breast feeding. Side effects haven't been too bad as yet. I have to say, I'm also glad to have my left breast back to it's normal size, I was feeling very lopsided for a while there!
Jennifer - two girls! How wonderful! I'm so glad to hear that all is well and the girls are developing well. Breast cancer is a worry, but without that genetic link and with your knowledge you can help them avoid it. Plus who knows what medical advances 20 years will bring?!
Cucho, I had my ovarian reserve tested, I think it's through a hormone called AMH. My result was below the lowest reading band of the test. So my ovarian reserve was very low. I still conceived through IVF. It's hugely frustrating to have to wait and wait and to have no clear answers. Hang on in there.
Hi BoomersMom. Rachel on this thread said a great thing to me when I was in your position. Here it is - it really helped me at the time:
"keeping our bodies safe from cancer is only part of the issue, isn't it? We want to be healthy because there are things we want to do with our lives, like have children. Being healthy is not merely an end in itself, it is a means to an end.I decided that the chance of being a mother was too important to give up, and so I decided to take the increased recurrence risk. " That's how I felt too. It may be scary, but it sounds like you've done the right thing for you. Wishing you (and everyone else trying) lots and lots of luck.Lisa x
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I'm not trying any alternative treatments, just trying to keep my weight at a healthy level and changing my diet. I am open for trying new things. Just came across DIM (sp?) and saw women who swear by it.
I am so petrified that my decision to stop Tamoxifen after only 6 months. I was 30 when diagnosed and 32 now. Tamoxifen just made me miserable. I had hot flashes, irregular periods and my bones hurt. I underwent a depression of epic proprotions, slamming doors and screaming. I was miserable. I hated it. But I didn't quite understand (or didn't 'want to understand it) the enormity of Tamoxifen. I don't want a reoccurence (hell, who does?). But my quality of life was abysmal, and I really want to have a baby. I feel like I'm gambling with my life, and I don't know if it's going to cost me. This decision freaking sucks. I stay on Tamoxifen and suffer the SEs and basically cement the fact that I won't be having kids. Or I don't take Tamoxifen, try to have a baby, but then suffer a reoccurence.
I hate this disease.
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It's a really tough decision alright but I guess with side effects like that it wasn't giving you much quality. I didn't mind being on it - in fact I felt more depressed when I came off it probably due to the concern about being off it and finally facing up to trying to get pregnant. The important thing is find anything that keeps you calm and relaxed such as meditation, yoga, etc. Be good to yourself, do lots of fun things - whatever works. I know it's easier said than done - I get upset and then get more upset that i'm upsetting myself!! what can you do!! The good thing too is that you are still young so it gives you a nice bit of time to play with to concieve xxx sending you hugs of support xx
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Bump
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Hi Lisa
Sorry but I have not logged in for ages! Congratulations to you on the birth of your baby. You must have been over the moon. I am glad things are ok for you. I bet all these sleepless nights are worth it.
All is good with me, I have now come to terms with not being able to have anymore children and I am enjoying all the quality time I get with my daughter. She turned 5 in June and she is just a lovely little girl.
Life doesn't always pan out as we all know but at the end of the day, we are all alive and most importantly happy and making the best out of difficult situations. I am so so pleased for you.
Take care
Claire xx
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PS Lisa - Loving the picture of you and your little one! Claire xx
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