Coming off tamoxifen early to have a baby
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Hi Bearcat
12 weeks to go. You must be so pleased that everything is going well for you. I am off to Addenbrooks tomorrow to talk to Mr Mather about coming off Tamoxifen and seeing what he has to say and then hopefully it might give my husband something positive to think about rather that thinking 'what if' all the time!
I will keep you posted as to how I get on.
Take care xx
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Hi Nitnat
It's been lovely to read your comment and you do sound so upbeat and postive about being off of the Tamoxifen. Fingers crossed that everything goes well for you on the baby trying route. Please keep us all updated.
Take Care xx
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Good luck Claire, I met Mathur and found him very helpful. He's treating a number of women in our position. Hope it goes well. Another small step in the right direction... xx
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Well Bearcat what an emotional day! I cannot have anymore children. My fertility is low and the percentage of me actually conceiving isn't even into 2 figures. My age is a big factor. They have said trying to conceive naturally is about 2% and doing IVF possibly 9% but no more than that. Also because of my age I would have to pay for IVF rather than going on the NHS. At least now a line has been drawn and I can get on with it and of course I am very grateful that I already have a child. Things could have been worse.
xx
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Hi Claire
I'm so sorry to hear that. How horrible this whole thing is. They do have a 40 cut off point in the NHS for IVF funding, i ended up having to pay for the last round of IVF myself which is hugely expensive - about £5,000. I was fortunate that we could afford it. I, too, was told my chances were very low. I'm not sure what test they gave you, but mine was an AMH test and I was bottom of the scale. My chances with IVF must have been the same as yours, if not lower, they never actually told me. So it may be possible, but it took 2 rounds of IVF to be successful (one funded, one not) and I know I was very, very lucky. You sounds very philiosphical which is great, but perhaps it might be worth meeting with the guys at Bourn Hall Clinic for a second opinion if you can fund a round of IVF. Gideon Verwoerd treated me there. It would cost you about £120 for a consult. Of course, it may be out of the question financially and it's a massive emotional rollercoaster with a small chance of success. The other really great resource I found was a counsellor through the Wallace Cancer Centre which is just close to Addenbrooks. One of their counsellors, Linda, works on fertility issues and cancer issues and you can get a number of sessions free through the Centre. She was a wonderful support to me when I was facing the prospect of not having children. I wish I could give you a big hug. Lisa xx
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Hello all,
This forum has been so inspiring for me espically your story Lisa - against all the odds you are so close to being a mommy - fantastic!! I was diagnosed with stage 1 breast cancer 4 and a half years ago, had 4 monhs of chemo and 3 weeks radiotherapy. Same off tamoxifen 3 weeks ago so will be starting to try soon. Took zolodex during chemo to surpress ovaries. I'm 37 now so time ticking. be looking forward to hearing your news Lisa and awaiting the big day for you!!!
Good luck to you all and hope those dreams all come true xxx If anyone has any words of wisdom for me starting out I would welcome them. Starting accupuncture this week to give me the best chance and see fertility expert this week too. xx0 -
Tessmerelda,
I did not take tamoxifen however I did have chemo and yr of herceptin started acupuncture 6 months ago while I was in my six month wait off of herceptin before trying my periods where not regular then either n w acu they became very regular I went to a holistic health center which did acu, yoga, and diet can give you a recommendation of a yoga video and such if u want we also do emotional health n talk about my feels especially my feeling regarding cancer n fear of not having more children well I can tell u we started trying in march and just found out last week we r pregnant!! I'm only five weeks so fingers crossed! Good luck to u and pm me if u hav any acu questions!0 -
Hi Tessmerelda,
Congratulations on coming off the tamoxifen and zoladex. It's such a nice feeling isn't it? I did acupuncture, had the occasional massage and cut out alcohol and caffeine. I also ate a generally healthy diet (which has lapsed a bit whilst pregnant with my natural tendency towards cakes coming through!!) and exercised a fair bit (walking, a bit of jogging and zumba which is just good for the soul!). I'm pretty sure it took at least 4 months for my body to get its self back to something near normal after coming off the drugs, so don't expect too much too soon. Good luck with your meeting with the expert, I hope it goes well. Feel free to get in touch if I can be of any help.
Jennifer - what wonderful news! Congratulations! I hope everything goes well, it's such a scary joyful time.
As for me, I'm 33 weeks pregnant now and still feeling very lucky and generally very well. The nipper is moving around loads and I'm counting the days to finishing work. Such an exciting time...
Lots of love
Lisa xx
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Lisa! 33 weeks you are getting so close!!! I can't wait to hear your news in just a few months!!! Do you know what your having?? My initial bloodwork all was spot on! Hoping our little valentines baby continues to be healthy!!! Keep us posted and I'll do the same!
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Lisa, I am so excited for you! Only a few weeks to go, and isn't it wonderful to feel them move?
Jennifer, wonderful news for you too!
Arthur is nearly 10 months old now, and he is on the move. So, so unutterably wonderful to have him. I wish such happiness to all the women here.
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Hi everyone,
Sunshinegirl- congratulations on the birth of your son (nearly 2months ago now). That is so exciting!
Claire: I am so sorry to hear about your fertility news. I'm not sure how to convey any comforting words properly but I do hope you are doing ok?!
Lisa: 33wks along! I hope to hear about your little bundle of joy very soon
jpmercy: yay!!!! I know it was early days but I hope your pregnancy is progressing well. I'd love to hear how it is all going?
Sakura: wow I can't believe that Arthur is now 10months old. I remember reading your posts when you were pregnant with him and thinking how lovely that news was. It sounds like you are just head over heels in love with your son and being a wonderful mother- that's so lovely to hear!!
Well I don't have any news to share yet except that I'm trying to conceive. It's all very exciting after finally making the decision to try. I still hope to be posting some positive news to share with you all some day. At the moemnt I'm just having fun and seeing what happens. Although I have 3 frozen lilttle yokes through IVF I'm not planning on thawing them out just yet..... I'm still just having fun and haven't become dispondant yet everytime my aunty flow comes around each month..... So I'm sending out lots of hugs and happiness to you all. I wish you were all around the corner to pop over for a cup of tea!! Thanks for all your stories, support and encouragement
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Hi all
Almost 38 weeks along now, not long to go! It's nice to be on maternity leave finally and gearing up for the birth. We're having a boy, it's wonderful to be able to imagine him as part of the family in just a few weeks time...
Jennifer, I'm so glad to hear that everything is going well. How are things? What is your news?
Rachel, how are you? How's Arthur?
Hi NitNat, I hope everything is going well and your positivity is seeing you through.
Sunshinegal, how're you getting on? Weather the storm of the first few months?! I'd be interested to hear more about your nursing bra. I've got to get one next week and although I had a reconstruction, it's now tiny compared to the huge mound that is my natural breast and I need to do some evening out!!
Lots of love to you all, particularly those that are trying or waiting to try.
Lisaxx
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The very, very best of luck Lisa!! Can't wait to hear your good news!!
So i'm off the tamoxifen almost 2 months now. Met the fertility specialist a month ago and basically everything seems ok except that the lining of my womb is 20mm thick (norm is 10mm) so i'm going into hosp on 13th Aug for a D&C to remove some of the lining and he will also check my tubes while he is at it. So hopefully it will be all systems go for us to start trying!!
I started accupuncture about 6 weeks ago as well. She doesn't agree with me having the D&C and wants me to try NOW but the fertility expert said not to try until after D&C - very confusing!! It's chinese accupuncture I am getting so i'm taking huge amounts of chinese herbs which i'm not so sure about but i'll try anything if it works!!
Anyone else try accupuncture and chinese herbs? Best wishes to all out there x Tess
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Lisa, two weeks!!! Yippee! Hope you are feeling great! Tess, I did acupuncture for 6 months I started when I finished herceptin I choose not to take tamoxifen bc my risk was not the high for it however my periods were crazy wacky and acupuncture put them back in the game! I did not do herbs we never got to that my acupuncturist felt thr my real issue was my qui (spelling?) meaning my emotions from having cancer and all were causing issues on my hormones anyway we spent a lot of time with yoga, diet, and emotional therapy and acuputure. We were allowed per my onc to start trying in April and in may we got pregnant! We just found out this week I'm nine weeks along and carrying TWINS!!!!! I have no idea how this happened and we re in shock! Hoping things continue to go well so far both babies had strong heart beats and separate placentas and sacs and my right ovary showed I released two eggs! It is all just crazy and I have morning sickness 24/7 it's awful but I know it s so worth it!!! I'll keep you all posted please keep the babies in your prayers and Lisa I will pray for a healthy delivery!!!!! Take care everyone! Jen:)
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Good Luck Lisa with the arrival of your son- do let us know how you get on and what you decide to call him.
Tess good luck with your journey!
And yay to you Jen!! Twins how very very exciting. My girl friend just had twin boys and there is something special about 2 heart beats... Congrtaulations and I hope you have a smooth pregnancy (beside your 24/7 morning sickness)
I just had a miscarriage and although I was only 6 weeks along I have mixed emotions about it all. At least I know I can get pregnant naturally so we will just keep plodding along. Because it was such early days I'm just trying to think that I am having a really bad period but my husband is the one who is quite upset by it. After all he has been through with me I think it is time that I really support him at the moment!! It is quite bizarre since my miscarriage because I feel it is a bit of a taboo subject. No one really talks about it and it is only since his has happend that I have had people tell me they have had a miscarriage too!
Well can't wait to hear news from all you wonderful and inspirational women.... GOOD LUCK everyone- it really is exciting that you are sharing this 'miracle' news here with all of us- And to those of you with heart breaking stories thank-you for being brave and honest too!!! It really does help me!! I'm still hoping to share some positive news soon with you all, but for now I'm going to have a little rest and then get back to trying!! Nat :-)
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nat,
I am keeping you and your husband in my prayers. I was sad to read you post but please do not loose hope, it is so very true that miscarriage is very common just not talked about, my sister had a miscarriage and then got pregnant with her beautiful son not long after. No matter what it simply is not easy to understand the why or to cope but have faith that it will be ok. You are so very right you can get pregnant! A few things that I have read/learned while trying, have your doc check your thyroid to make sure it is not too low mine was a tad low prior to bc and then After chemo and things it got worse it is easily controlled with medication but it can cause lots of problems with pregnancy if not treated. Also a few suppliments I have read thr make a difference and honestly I was worried I wasn't ovulating so I talked to my doc and she suggested taking a prenatal vitamin, 100mg of vit b6 and b12 as well as my usual vit d and calcium. I would ask your doc before but i wanted to share with you! Thinking of you tons and will keep you in my prayers! Lots of hugs!!!! Jen0 -
Nitnat, so sorry to read about your miscarriage. however early they happen, they are awful. ANd you are right, it is like a club you have never heard of until you join, then you find out so many people are members.
Lisa, what is happening? Can't wait to hear that your little man has arrived! Thanks for asking about Arthur: he is 11 months and pulling himself up to standing and babbling and singing away and I am so looking forward to hearing you tell us about how your son is faring!
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Hello lovely ladies,
I just wanted to thank you all for your posts. I often think of message boards as places where people tend to moan and complain, but I have been so struck by the positivity, support and sensitivity you all have on this thread. I am also in my thirties and facing the decision of when to come off tamoxifen, and I have loved reading your stories - I got completely addicted! I feel I can relate to all of you who have been through this blip and are just getting on with your lives and I found your posts helpful, heartfelt and informative. Many thanks for sharing your knowledge and experience with everyone, and for supporting each other so brilliantly.
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Hey ladies,
Jen - SO delighted with your fantastic news!! TWINS!!!
Big congratulations!! More inspiration for us all with your wonderful success story. Hope the morning sickness passes soon for ya.Nat - really sorry to hear your bad news. As you rightly say so few people talk about miscarriages and it happens so many women on their 1st - my sister had a miscarriage a few years ago and you would not believe the amount of women that told her they miscarried their 1st. We will keep the fingers crossed for some wonderful news for you. Thinking of you and your husband.
Sakura - great to hear that your little boy is keeping well.
Cloudberry - have you been on tamoxifen long?
I think at this stage we are all dying to hear Lisas news!!
No news here - in for D&C in 2 weeks and hopefully then the fun part of trying begins!! watch this space!!
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Hi Tess - I've been on tamoxifen for just over a year. My oncologist always said it's a good idea to stay on it for at least 2 years, but at my check up last week he suddenly started talking about coming off it after 18 months which got me thinking! He seems quite relaxed about the whole thing - I thing partly becase there's so little information on this topic.
I found a study of 3,500 women comparing taking tamoxifen for 2 yrs to 5 yrs (Journal of Clinical Oncology by Allan Hackshaw of Cancer Reasearch), but it included people aged 44-80, so our age group wasn't really reflected, plus there will have been a huge range of variables in that group! If anyone's interested, there was only a 6% difference 15 years later. Also, the advantages of pregnancy won't be reflected in those figures due to the age of the participants. My oncologist says that, although we don't completely understand why, women who have breast fed are less likely to get breast cancer, so he thinks that offsets the risk of coming off tamoxifen early.
After my recent meeting I was fleetingly tempted to come off it after the 18 months but, having talked it through with my husband, we are both thinking why not stick it out for the widely accepted 2 years - it seems like a sensible compromise for me. All interesting stuff!
Good luck to you and all the other ladies out there trying! xxx
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Hello everyone,
Our son, Finn, arrived on the 28th July at 3:30 am having kept me busy throughout the opening ceremony of the London 2012 Olympics! I will never be able to watch that ceremony again without tears streaming down my face. Finn is just gorgeous and I feel like the luckiest girl in the world. I'm even managing to breast feed from my one remaining breast. My husband is equally in love with him which is incredibly precious to see. We went to register the birth yesterday at the registry office that we got married in three years ago having just had the (wrong) terminal breast cancer diagnosis. A lovely poignant moment - how things have changed! Thanks to you all for the support you have given me over the last few months, it really has been wonderful to hear from you all and to feel that, whilst we are in the minority, we are not alone!
NitNat, I'm so sorry to hear your news. I was astounded at how common miscarriage is and how little talked about. You sound so positive and strong and I'm sure that will carry you through. I did a bit of reading when I thought I was miscarrying (about the first three months of my pregnancy) and it does seem like people who miscarry often then go on to have a successful pregnancy next time. It doesn't make it any less heart rending. Do look after yourself. I'll be keeping everything crossed that your luck has now turned.
Rachel, Arthur sounds wonderful - what a precious time!
Jen - huge congratulations, how wonderful to be expecting twins. I hope it all goes well. My top tip is pre pregnancy yoga, it was amazingly useful.
Tess - I had acupuncture throughout my IVF and at the end of my pregnancy. It was wonderfully relaxing. I don't know how much good it did physically (although the evidence is quite good that it promotes conception success), but mentally it was great. Best of luck with your journey.
Cloudberry - Six months will zoom by and at least you'll know you've erred on the side of caution. All the very best with it all.
Hopefully, if I've got the technology right you'll see me and little Finn in my avatar picture.
Take care all
a very happy Lisa xxx
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Hi Lisa,
So lovely to hear from you and know that you and baby Finn are doing well. Huge congratulations to you - he looks gorgeous and you look so happy. It's amazing to look back at your first message - I'm sure you're certainly not lonely anymore! Well done and thank you for sharing your story and giving us all hope.
xxx
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Hi Lisa,
I've been lurking on this thread and waiting to hear your good news. Though i've already had my boys eons ago, my heart went out to all in this thread and your news and picture are wonderful! Congratulations and many joyful cuddles with Finn for you and your hubby!
Hugs from Canada, Patti
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Congrats Lisa!!!! Lil Finn looks adorable!!! So so happy for you I have been thinking of you the past few weeks!!! I hope you are feeling well and settling right into mommy hood!!
I had my twelve week sonogram and the doc said the twins look great! Now if only I could keep my breakfast down! They are so worth it though!! Have a great weekend everyone!0 -
Oh Lisa, I am so so happy for you! The picture of you and Finn is beautiful. Congratulations. Hope breast feeding is going well. It is such a healing thing being able to feed our sons ourselves.
Jennifer, glad to hear all looks well at 12 weeks.
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Lisa, congratulations on the birth of your son! Very encouraging to hear! If you don't mind me asking, what was your response like on your IVF before BC? Was your ovarian reserve low before chemo?
My situation is we had been trying to conceive our first for about a year and a half, found out I had diminished ovarian reserve (antral follicle count was 7), and was contemplating what to do next, whether to try IVF or not, and then was diagnosed with BC.
I had surgery and then decided to do egg retrieval to freeze embryos before chemo. 10 follicles began developing which seemed like a great response given the previous AFC, but on ER only 4 eggs. I thought well quality not quantity, but unfortunately they let us know a few hours later all were immature. Devasted, we got our hopes up again when the next day they said 2 unexpectedly matured in the lab overnight. But then, they did not fertilize.
Now I'm faced with the tough decision, chemo which is likely to put me into permanent menopause, or the possibility of no bio children. Finances are obviously a factor as well, an anonymous egg donor is very expensive, (I don't think I know anybody) I got lucky and had extended medical benefits briefly which covered the IVF meds and the procedure was discounted due to cancer. Adopting a newborn is also expensive in legal fees and the possibilities are low.
If the chemo was necessary for survival it would be a no-brainer, but in my situation node negative and strongly ER positive its benefit is smaller (6% increase in survival) It sounds like the tamoxifen is much more of a benefit but even without chemo I don't think I could be on it for 5 years (I'm 38). I also very natural approaches minded so the idea of putting a non-selective poison in my body does not resonate in the first place.
Anybody else in a similar situation of decided to chemo or not to chemo?
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Dear velo,
Don't assume chemo will put you into permanent menopause. Find out about having Zoladex shots to shut your ovaries down to protect them during chemo. The shots are said to halve the risk of permanent infertility. They are pricey (or at least were in Australia because they are not covered by our Medicare system) but my fertility doctor really recommended them. Even without the shots I had about a 60% chance of fertility returning at my age.
I did chemo (AC then T) because of my node status but was glad I did because I then found that the benefit of Tamoxifen after chemo was quite small and I felt justified in refusing the Tamoxifen so I could conceive. If I had not had chemo I would have felt more pressure to take the Tamoxifen. The information about it really scared me and I feel very calm about having had chemo for 6 months instead of a pill for 5 years. I had great naturopath-prescribed supplements during chemo which also really helped me ride out the chemo.
Like you my egg retrieval prior to chemo did not work. I did have part of an ovary frozen too, but as it turned out I didn't need it. My period returned 6 months after chemo ended (I was 36) and I conceived within 2 months. Lost that pregnancy but conceived again and my son was born almost exactly 2 years after chemo ended.
Please feel free to PM me or ask here for more information.
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Nitnat- I had a miscarriage too at 7 weeks, 5 days back in late january this year and it was heartbreaking but at the same time, I was happy I knew I could get pregnant after chemo! I have embryos in the freezer too and we are hoping we don't have to use them.We have been trying again since May but no luck so far. I think my hormones were out of Wack after the miscarriage.. I just keep reminding myself that, sometimes the best things in life are worth waiting for. Hopefully the miscarriage will make sense to us one of these days when we have our own babies. I found lots of people don't talk about it at all but have found out that 3 of my close friends have all had one. It's one of those 1 in 5 chances...I just hope it wasn't the chemo that ruined anything and It just was one of bad odds. I'll keep ya posted, hopefully aunt flo won't come this month!!!
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And congrats Lisa!! You bring so much hope that babies are possible after breast cancer!
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Hi everyone
Thanks so much for your kind words.
Jen - I'm so glad to hear that all is well. Good luck with controlling the nausea, it can be a challenge!
Hi Velo, thanks very much for the congrats. It is very much a dream come true for me. I'm not too sure what my ovarian reserve was like before the chemo. There was no reason to think it might be particularly low apart from my age (37). However, I responded poorly to IVF with only 8 eggs, 2 of which were mature - none fertilised. That suggests that I may have had a low reserve to start with. Post chemo it was bottom of the scale, but I still produced 4-6 eggs on each IVF cycle, with about 2 fertilising each time. Unfortunatley IVF is a real numbers game - the more you try, the more chance you have of success. In all we had three attempts before being successful. For me the benefits of chemo were very clear cut so I didn't have your decision to make. I have heard of women going through chemo with zoldex and having children afterwards, so it is possible. I do know how it feels to be in a position where you feel you have no options for children - biological or otherwise - and my heart goes out to you. Is treatment overseas an option for you? The UK links to clinics in Spain where the waiting list for egg donors is less and treatment costs are not unreasonable.Good luck with your decision - do PM me if you want to chat further.
My hubby, Finn and I are off to the Olympics today - perhaps a little foolhardy, but given he was born during the Olympic opening ceremony, we felt we had to!
Lots of love
Lisa x
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