Coming off tamoxifen early to have a baby
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Lisa, how wonderful wonderful wonderful to log on and read your news!! I had bleeding at 5-6 weeks with Arthur and thought I had lost him, so I can imagine how scary the bleeding was. I will be checking in very regularly to hear how things are going.
Much love to you and your husband
Rachel
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Thanks Rachel! I'm just over 10 weeks now and as far as I know all is well. I had another scare at 9 weeks, but again the scan was fine. It's good to know that you had something similar and everything was ok in the end. I hope you enjoyed your first Christmas with your little one and that you're managing to get some sleep!
All the very best for 2012.
Lots of love
Lisa x
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Congrats bearcat!
Keep us updated on your progress! So excited for you ad all the best for a healthy pregnancy!0 -
Bearcat! Yay for everything continuing to go well so far. Definately keep us posted!
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Congratulations, Bearcat!!!
I opted out of Tamoxifen as none of the oncs I saw felt it was absolutely, definitely warranted in my case. And they assured me that I could start it years from now if I changed my mind. I'm very fortunate that I did not have to make that tough decision about coming off of Tamox part-way through. I'm sorry some of you have to deal with that.
Because I had DCIS only, we got a medical "blessing" to start trying for a family 6 weeks after my exchange surgery, and I was thrilled to learn I was pregnant in August. I'm now almost 25 weeks along and the little one is due at the end of April.
Bearcat, I hope everything continues to go well!!!
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Dear all
I've just made it to 13 weeks! I had my three month scan yesterday and the baby is absolutley fine and was waving at me. It was so amazing. I feel incredibly lucky.
Thanks so much for your congrulations SKD, minimacsmom, Hadley and Sunshinegal. It's so nice to have you all celebrate with me. I hope 2012 brings you love, happiness and health and everything else good. And big congratulations to you, too, Sunshinegal. How wonderful for you. It's funny isn't it how these Doctor's become psuedo priests blessing our attempt to have children, I very much felt that was the case when my oncologist gave me his 'blessing'!!
Rachel, I hope all is going well with you downunder and little Arthur is thriving.
Love
Lisa xx
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Lisa, I had my heart in my mouth when I saw there was a new post from you here. Thank God all is going well for you. Seeing them on the scan makes it feel so real, doesn't it? Arthur is very well, thank you - 5 months tomorrow, and full of smiles and sounds.
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Thanks Rachel. So far so good! We're feeling a little more secure with it and beginning to tell people now. It's quite overwhelming to see their response, everyone is so happy for us. Even my hairdresser gave me a huge hug!
Arthur sounds lovely, I'm so glad he's doing well. Enjoy this time with him, I hear they are lovely at this age. lots of love xx
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Oh Bearcat! i LOVE reading your posts!!! it is so awesome to see life after breast cancer!! my onc gave me his blessing to start trying in March! here's hoping!! i have had four months of straight normal periods! sticking with the acupuncture and hoping what is meant to be will be! keep us posted an enjoy your pregnancy!!! so very thrilled for you!
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Hi ladies,
I have been off of tamoxifen since August after being on it for 10 months so we could try for a baby. I had my last reconstructive surgery in november and found out we were pregnant in The middle of January. However I had lots of spotting this week and went to the doctor, had an ultrasound and there was no heartbeat detected, I would have almost been 7 weeks pregnant so there should have been a heartbeat by then. The next day I started bleeding lots and my hcg levels and fell so it definitely was a miscarriage. We are going to try again in a couple of months but on a positive note, we know we are able to get pregnant. I just hope there are no hormonal imbalances from taking tamoxifen.. And I had a double mastectomy so I always wonder where those "hormones" go that are supposed to make the milk??0 -
Dear SKD
I am so sorry to hear of your miscarriage. I had one too, after I fell pregnant 3 months after my period returned post chemo. It was a little too soon, I think. Maybe that is what it was for you too. Or maybe it was just that you were the 1 in 7 pregnancies that miscarry, cancer or no cancer. Like you said, the good news is you are able to conceive. I'll be keeping my fingers crossed.
As for the prolactin (the milk making hormone), it is also the hormone that makes us feel good after sex. So if you won't be making milk, I guess you'll just be feeling good!
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Sakura, did they know why you miscarried the first time and did you have to do anything differently the second time to have a successful second pregnancy (like progesterone, more ultrasounds, etc..)?
And hows little Arthur doing!?? Hope you 2 are doing well!!
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They said it could have been that my body was not fully back in sync after chemo - I had only had 2 periods before I became pregnant. I miscarried at 11 weeks but there had been signs not all was well - the baby was not growing well. But they also said that nature is wasteful and many many women experience miscarriage without having had the background we do.
I took extra high doses of folate and other supplements as recommended by my naturopath. But once we become pregnant, there is no difference between us and other women.
Arthur is really well, thank you! He has discovered his feet and plays with them all the time. So adoreable.
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Hi SKD
I just wanted to say that I'm so sorry about your miscarriage. I haven't experienced it myself but was convinced that it had happened to me for several months. I'm pretty sure it took more than the three months advised by my doctor for my body to settle down after coming off tamoxifen so it could be that. I tried IVF on the first period I got, three months after coming of tamoxifen and I'm sure that was a bit too soon for me. By about As Sakura says, miscarriage is just sadly very common, much more so than we all think because people tend not to talk about it. The good news is that many people conceive very quickly and carry to term following a miscarriage. I wish you lots of luck with it all.
Rachel, can I ask you a quick question. Did you go on tamoxifen after giving birth or have you decided not to bother with it? My onc. says I must go back onto it straight after the birth, so no breastfeeding. I'm fine with that, although slightly worried about my poor body going from hormone overdrive to menopause in a matter of days!!
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hi
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Thanks ladies. When the doctor was telling me there was no heartbeat and I was miscarrying, I remember reminding myself in my head that "it's ok.. You can deal with this. You had breast cancer. This news is easier to deal with!" we are hoping to try again in a couple of months. I feel like my body needs a little rest from all the surgeries and emotions but we are holding up and all is well. Just glad I'm not alone out there!
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Hi Lisa
I am not taking Tamoxifen at all. Didn't take it after chemo etc and when I saw my oncologist in September (a month after Arthur was born) he didn't even mention it because he knows I don't want to take it. Everyone's risk profile is different but for me that few percentage points of risk reduction were completely insufficient to justify Tamoxifen at any time. I know my oncologist thinks I should be taking it but he respects my decision not to.
I am breastfeeding Arthur from my non-cancer side (as the cancer side was radiated and does not produce milk). Breastfeeding is protective against breast cancer, everyone says so. And it is better for babies where the mother is able to do it. He'll be 6 months next week, and breast feeding him is one of the most wonderful healing things. It really makes me feel like my body works like it is meant to, instead of being flawed somehow from cancer.
If you decide to accept your oncologist's advice of course that is fine, and formula babies do fine (so don't worry SKD, your babies will be fine. And you WILL have a baby, I am sure of it), but if you feel sad about missing out on breast feeding I do urge you to look into the stats on whether it will really make that much difference if you wait a few extra months before starting back on Tamoxifen. Even a month or two of breast feeding could be so lovely for you and your little one, if it is something you wanted to do. And a new baby is so hard that I really really urge you not to put yourself into menopause again at the same time! Lots of women wean after a few months, and so if you do want to go back on Tamoxifen you could still do that AND get some breast feeding done.
I know you know this, but your oncologist is not in charge of whether you go back on Tamox: you are. If you feel comfortable letting go of breastfeeding that is cool (I know several women who just didn't breast feed because they didn't want to, and you have a much better reason than them not to!) but if it is important to you don't give up without a fight!! Sorry if I am coming across too strong, I just hate how some doctors try to make our lives all about cancer instead of being about the many other glorious things we have.
Anyway, how are you feeling?
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Hi
I just wanted to say hello. I am just starting to think about coming off tamoxifen early. Just got to 2 yrs. I am in England.
Bearcat it was so lovely to hear about your success, I hope everything is going well. I did IVF at Hammersmith but before I was diagnosed. I was successful after 5 attempts and then miraculously had a second child (after two miscarriages) concieved naturally.
I have 4 embies frozen and I really want to get them out of the freezer!
I was diagnosed Aug 4th 2009 when my youngest was 7 mths old. I was stage T1a, HER2+, nodes = 0/3 (sentinel node biospsy).
Hope everyone is doing okay, Vicky
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Hi Everyone,
Just wondering if any of you had any side effects coming off Tamoxifen? I've now stopped it for 3months my periods are regular and the week before and the week of my period I have incredibly swollen and sore breasts. So sore that it is torture getting up in the mornings and walking to the bathroom without holding on to them so there is no movement or even slight bounce! Needless to say this is a little hard to do when out in public so I walk as smoothly as possible. I obviously had a lumpectomy so I am assuming my hormones are returning with avengance after what I have put them through for 2.6years now. Did anyone else experience this and did it subside? I am wanting to try for a baby but I feel my body is still trying to regulate itself?? I am thinking of waiting another 3 months so I have been off it for 6 months and see how I feel. And I have 3 embryos in the freezer- how long did everyone persist with trying naturally before getting assistance? Or are there certain things I should be doing now (naturally) to help increase my odds of having a success story like so many of you?!! And are there mums out there that are breast feeding from the breast that has had cancer and treatment?
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dear NitNat
I can only answer some of your questions. I conceived naturally 3 months after my period returned but lost that pregnancy, and conceived again 10 months after my period had returned. If you had radiation, I strongly recommend you take large doses of folic acid as radiation affects our body's ability to retain folate, which helps avoid both birth defects and miscarriage. My naturopath told me to take 10 times the usual dose.
If you had radiation it is most unlikely that breast will produce milk, as the ducts have been fried by the radiation. If your lumpectomy involved surgery to the nipple area then it is also unlikely. But don't worry: it is possible to feed from just one side. Arthur (who can now be seen in my avatar!) is 6 months old and (with some help from lactation-inducing drugs) he is almost completely breast fed from my one functioning breast.
My cancer breast never swelled during pregnancy or after birth, but for a while it did ache in sympathy with my other side when I was breast feeding.
the very best to you!!
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Lisa, how are you going?
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Hi Lisa
I have only just joined this site and read your story. I was diagnosed with breast cancer in Sept 2009 only to find out the following week that I was 6 weeks pregnant! As you can imagine (same as anyone else) my world just fell apart. After several discussions with the hospital I was told that because I was under 12 weeks pregnant, depending on which surgery etc I had to have, it could result in a miscarriage or a deformity. We have a beautiful daughter who was just 2 and had to think about her even though it had taken us a year to conceive second time round. A few weeks on after a lumpectomy, then another one and another one, the cancer was not gone so I had to have chemo and this was when we made a huge decision (after talks again with the clinical team) to have an abortion. I was dying inside but knew it was the right decision and within a few days of that my chemo started for 6 months, I then had the mastectomy with resonstruction and lymph node clearance followed by radiotherapy. It was a hard decision but knowing what I went through with the treatment, would I have been able to bond with that baby feeling as ill as I did? I am now at the stage (after being on tamoxifen & zoladex for 2 years) and thinking about another baby. My husband and parents are not feeling the same way as they are scared about me coming off the Tamoxifen. I have been told that 2 is the magic number as there is less chance of a recurrance then but my family say there was a reason I was put on it for 5 years in the first place. Things change daily, research becomes more advanced. Who knows! You do feel very alone in situations like this. I am going to see my oncologist tomorrow to have more of a discussion but I know that she has never helped anyone in this situation before and I would have to be referred to Addenbrookes where they would keep a close eye on me if I decided to opt for the pregnany. Just reading your posts and I am keeping eveything crossed for you. The only downside i may have is that my cancer was oestrogeon fed but saying that my friend was diagnosed twice in 2 years and the cancers in each breast were completely different. Reading all the posts makes me realise that even though you do feel alone, your not really as so many people are going or have gone through the same thing.
Claire xx
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i'm joining in here since i'm in this situation - july will be 3 years on tamoxifen and my onc wants me to make a decision by then as to what i want to do about coming off to have another baby. i have a 4 year old - i feel this makes an even harder decision. never would i take a risk with my health that would affect him. i was told from 2 docs that 3 years is a reasonable time frame to try this so i feel that it's a safe decision - but safe decision is a relative term when it comes to being a BC survivor. i ... just... can't .....decide.
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Hi Reeney
I think the decision is even harder when you have a 4 year old to consider. I would certainly not want to jepordise leaving my 4 year old daughter. She means the world to me and I do sometimes think I should be lucky and grateful for what I have. Like you I have survived BC and do I want to take any risks. Is is the hardest decision any of us will make! xx
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Hi all
I'm so sorry for my long silence, life has just been a bit busy and I hadn't realised how quickly time had passed. I had my 20 week scan recently (I'm now 22 weeks) and everything is absolutely fine. We're expecting a little boy and I can feel him moving. It's just wonderful. I feel so lucky! Apparently that feeling doesn't go away....ever! I really hope that all of you are trying to conceive have the same luck.
Rachel, thanks so much for the advice on tamoxifen and sorry not to respond for ages. I went for my annual check up with my oncologist and saw a really lovely lady Doctor. She was just so pleased for me about the pregnancy that it was lovely. I spoke to her about going back on the tamoxifen and she felt that I could leave it a few weeks or months so I feel quite happy about it now. I'll have the experience of breast feeding but satisfy my desire to reduce my risk. Menopause and a young baby strikes me as a pretty nasty combination!
Sunshinegal, how are you getting on, is all going well?
Hi Vicky, sorry that you've gone through the IVF/cancer mill, but congratulations on coming out the other side and on your two little ones. Good luck with your decision on tamoxifen, it's such a personal thing.
NitNat, I didn't have side effects like the ones you describe, but one thing that IVF and breast cancer has taught me is that everyone responds differently to medicines and coming off them! I hope it gets better soon. Personally I felt that three months was too soon to start trying to conceive, I'd only had one period when I started trying IVF and I'm sure my body was still adjusting. If you feel you need to wait, then do. It's probably the right thing for you. I can't help on the trying naturally front as we knew we had to have IVF from the start. Zita West is an authority in the UK on things to try to conceive.
Hi Reeney, everyone has a different desire to take risks. The truth is there is so little data on women in our situation that you just have to go with your heart. I spent ages weighing up the options, reviewing the evidence and agonising. I made my decision. So far it's going well, but I do still worry from time to time. I stopped after a year and a half. I wouldn't have done if I was in my early 30s, but I was 39 and if I wanted NHS funding for fertility treatment 39 is the cut off point. Good luck with your decision, you will make it when you are ready.
Hi Claire, My heart really goes out to you. What a terrible decision to have had to make. I cannot imagine the heart ache of going through an abortion whilst dealing with cancer. I was treated at Addenbrookes and they were really great. They have only just started allowing women to have tamoxifen holidays to try and conceive, so they are not massively experienced (who is?!), but I found them to be responsive and sensitive. My oncologist has repeatedly assured me that women who have had breast cancer and go on to have children do not have a higher rate of recurrence. It is difficult, though, when your family is being protective. My husband was getting to the point where he felt we should stop the IVF on my second try. I was keen to try again. Luckily we didn't have to have that particular fight!
You're right, the data is not certain. I was on Zoladex for a year to be on the safe side, it was awful and it turns out now that the evidence that it reduces recurrence risk is now considered weak. Marvellous, a year of permanent PMT and no libido, just what I needed! Best of luck with your decision. I hope your chat with your oncologist went well and that you find your way to a solution that works for you.
Extra long post to catch up - sorry about that Ladies.
Lots of love to you all
Lisa xx
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Hi Lisa
So glad to hear things are going well! Little boys are the BEST, I am pleased you are having one! Very glad too you've found a doctor who supports a sensible middle ground on breastfeeding and Tamox.
Love, R
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Wow- this thread is so helpful. Thank-you everyone for your stories and advice. I have now been off Tamoxifen for 6months and feel so much better within myself and what feels right for my body. I personally think 3 months would have been too soon for me to think about conceiving a baby but now amongst the fear and angst I think I am ready to try for a baby! I hear some of the stories here and am so thrilled with the positive results. I can only try and imagine what a baby would feel like kicking in your belly. I just passed my 3 year anniversary and all my scans came back clear- yay! It's always an anxious time getting those results but I'm hoping my baby scans are positive too! Hope everyone is doing well on their journey, whether it be treatment, pregnancy or being an amazing mum! (aswell as an amazing BC survivor...thriver!)
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I had my son on April 23! We're in love.
It has been interesting so far to try to breastfeed on my remaining left side. We're sorting out some latching problems and in the meantime I am pumping and taking Reglin to increase my milk supply.
The biggest challenge, actually, has been (is) finding mastectomy nursing bras. Sounds like an oxymoron, no? The mastectomy bra specialty shop doesn't carry them, so today I went to a 'regular' boutique which is fitting me into nursing bras and then will do (free) alterations to add a pocket for my breast form.
Best wishes to everyone who is trying for kids... bearcat, you must be close to your third trimester by now...?
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Sunshinegal congratulations!!! Hope the latch problems resolve. I had similar problems and also had to take drugs for supply but now we are at nearly 9 months and still breast feeding. Best thing ever.
Much love to you and your son.
R
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Hi NitNat, Congratulations on your scan results, what a wonderful feeling that must be! We don't have regular scans on the NHS, so we avoid the trauma but perhaps have more uncertainty. You sound wonderfully upbeat, just the frame of mind you need to try for a baby! All the best with it.
Sunshinegal, congratulations!!! What wonderful news. What did you call your little boy? I can imagine breastfeeding must be interesting with only one breast. Bras are a challenge aren't they? I have one megaboob and one pert little fake one so I'm feeling very lopsided, but thankfully one of the department stores here in the UK is fantastic, very up on breast issues. They fitted me out so I looked and felt normal again, so I'll go to them when I have a similar issue with maternity bras. It's not something that many people have to think about! Enjoy this wonderful time. I'll be joining you very soon I hope - another 12 weeks to go for me. So far it's all going well, I still smile when I see my pregnant belly in the mirror and feel incredibly lucky...
Hi Rachel, how are you going? All well? And little Arthur? You've picked a great name there. Still trying to decide what we're going to go for. Such a nice position to be in!
Best of luck to all of you out there trying or waiting.
Lisa xx
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