I was diagnosed with stage 1, grade 2, invasive cancer including lobular component 2 years ago at age 36 years, no lymph nodes involved.There was lympovascular invasion.I had surgery and radio therapy and have just completed 2 years on Tamoxifen.I have never had any children and am now considering the option of pregnancy and hence stopping Tamoxifen.I remain very anxious about this as obviosly tamoxifen recommended for 5 years but age is not on my side.I am also very anxious about the breast cancer returning.I have the all clear from my recent mamo and CT and my oncologist feels it is ok for me to go ahead after being off Tamoxifen for 3 months .I was wondering if anyone else has had any experience with this issue?
bumping this up for you GerryC - very best of luck.
Snap (almost!) I’m just a bit behind you, as I had chemo too. So its two years since diagnosis, but just over a year on tamoxifen. I can hear my biological clock banging very loudly in my ear, as after two years on tamoxifen I will be 38 and a half (the half is very important!) which is not an ideal age to start trying for a family. The effect of chemo also adds an extra anxiety. I’m on zoladex at the moment too, so have not had a period since chemo. I’ve got an appointment with my surgeon soon. Im hoping he can refer me to a fertility councillor. Did they tell you anything about increased risks stopping tamoxifen early?
No helpful input from me apart from my onc and 2 fertility experts I’ve seen also said you could stop Tamoxifen after 2 years. But I’m only halfway through chemo and have surgery, rads and Tamoxifen to come…so can’t impart any advice or experience - but will be watching this thread to see what others say.
Hi GerryC. I’m probably not much help as I’m behind you (just finished rads and still on my first box of tamoxifen). However, my oncologist told me I could stop tamox after 2 years if I wanted to try for kids. In fact, she said I’d have to stop after 2 years as I would be too old if I waited the full 5 years (I’m 36)! Just what you want to hear…
So obviously we’re a long way off making any decisions but we did get some embryos frozen (I had chemo too) so if the chemo/age has not been on our side, we have a back-up plan.
I share your anxiety about the bc coming back though.
Hope you can get some other advice from people that are further on in their treatment.
I had dx in Feb 1997, I was just 34 had mx/recon/ took tamoxifen and zoladex, clinical menopause follwed, started it about aug/sept 1997, I married in aug 1998. At my annual mammo in spring of 1999 I asked about coming off zoladex and tamoxifen to see what would happen baby wise, if system would kick back in etc, I was advised to stop zoladex at that time & then 6 months later stop tamoxifen at which point it would be annual mammo time again and with the all clear again I let nature take it’s course. I took tam for the best part of three years??? Not exact on dates it was a while ago?
Just to give you hope in Feb 2002 I gave birth to a beautiful baby boy at the grand old age of 39!!! He was followed 20 months later by a gorgeous girl, I was nearly 41… They are the lights of my life and I wouldn’t be without them and I hope you are telling someone else that in 14 years XXX J
Lovely post, thanks for sharing it. Just wondered whether your periods came back only after you stopped taking tamoxifen or whether they came back before?
I’ve just finished chemo, rads, etc and on the 5 years of tamoxifen path and was told to stay on tamoxifen for 2-3 years, then come off, try for kids, then go back on after for a final 2-3 years…and the same as Bob20 (nice pic btw!) to try sooner rather than later as the chemo will likely mean menopause will happen earlier than normal.
Good luck to you all trying!
No periods all the time on zoladex & tamoxifen, they came back after I stopped taking them but to be honest I can’t remember at what point? and I am now 48 and still got em!!!
If you look carefully in the picture that’s my two on the ‘log’ looking at the forth bridge XXXX Jeanette
Just seen this. I’m at a similar stage, 2 years post-diagnosis. My last zoladex is now wearing off, and I have to stay on Tamoxifen until next March when my next oncologist appointment is. I wanted to see him again in January, he wanted to leave it a little longer…
I am hoping that conversation will give me the OK to try for a baby, but he didn’t seem as keen on the idea as my previous oncologist (who left for a better job in Canada). I had attempted egg harvesting just before chemo, but it wasn’t successful. Diagnosed at age 36, am now 38 (nearly 39) and not wanting to leave it much longer!!
It was really heartening to read J’s post. Thank you for sharing that.
I have been in a very similar situation. I was diagnosed age 37, in the same week I was accepted for IVF treatment. I was stage 2, ER+, full right mastc, optional chemo and tamoxifen for 2 years with a view to trying for a baby. I only lasted 1 year on tamoxifen as my side effects were awful. After the 2 years, I went back to see my consultants, had tests to confirm fertiltiy ok after chemo, 2 out of 3 were all for me going ahead with IVF. My oncologist was of the view that it was low risk and the most recent medical research states that getting or being pregnant did not cause cancer and did not cause it to come back, it would only feed any rogue cells left behind!!
I have to be honest and say that it was the thought IVF and a potential child that got me through the worst of the 2 years post surgery.
My surgical cons warned me of the risks and it was obvious he was less than keen, but he did say that it was my oncologist who was the expert and I should make my decision based on all information available to me.
In March of this year, I took home the IVF drugs. The next morning I completely lost my nerve and was unable to go ahead with it. Fear of the cancer returning got the better of me.
I have not given up all hope, have had fertitlity counselling and will look at our options again in 2012. I am lucky that all my consultants and their teams have been incredibly supportive.
I wish everyone in this position the very best of luck
Well I saw one of the surgeons. And this time I was told a minimum of 3 years tamoxifen. “maximum benefit for minimum risk”. And he also said you couldn’t finish the course of tamoxifen after a break. But I’m not sure if this is true? I seem to remember people on here being told they could.
I know of course that 2 years is better than one and 5 years is better than 2. but I need to know what the increased risk is to make an informed decision? He seemed really reluctant to give me any detail?
I think I will be getting a 2nd opinion!
I also saw my GP about referral to a fertility consultant. But they really can’t do any tests till I’ve finished the tamoxifen. But they did say that ivf is available to women over 40 in exceptional circumstances like mine. So that was one positive thing. And I could be offered help after 6 months of trying naturally.
I really dont want to leave it any later to try. I’ve got through all this by thinking I just have to do 2 years, an extra year feels like 10 to me.
I was diag in feb 08, at 28 yes old. I had surgery, chemo, herceptin, and 2 years 20 months tamoxifen.my doctors were happy for me to come off tamoxifen at nearly 2 years but I went travelling for a yr first. We stopped tamoxifen in April this year, my periods hadn’t stopped but were extremely light whilst on tamoxifen, but after 6 weeks of stopping, I had an almost normal period! We started trying to have a baby from June (2 months later,as recommended),and surprisingly,conceived naturally in august!
I am now 18 weeks pregnant, and just started feeling my baby move! It’s unbelievable after all we’ve been through, but we’ve got there!
Breast cancer makes you appreciate the things that others take for granted! Be positive, time will fly and you’ll be at the other end in no time.
I know I still need treatment, once I’ve had my baby, we will be left with decision to have tamoxifen or have my Ovaries removed and go on atomised!!! Who knows, I’m taking every day as it comes! I trust my oncologist though, he’s been right so far!
What I need right now is a Facebook stylie ‘Like’ button!
Congratulations and thank you for sharing your story. I hope one day to be posting a similar message!!
I hope your pregnancy goes well and you enjoy every second of it.
I wanted to add details of the conversation I had with my surgeon yesterday.
I had my 2 year check up a couple of weeks ago, and mentioned then that I still wanted to become pregnant, and could we talk more about it when I came back for my mammogram results when I’ll bring my other half. Consultants initial response was that you must wait for at least two years (I have!!), that longer would be better - but that never getting pregnant would be best. He was worried about the surge of pregnancy hormones on my hormone receptive cancer.
However, the follow up appointment was yesterday, and in between he has been doing research. His conclusion from that research was that there is no reason to deny me the opportunity to try to get pregnant. He has even given me a copy of the main and most recent review article (which reviews all of the relevant studies to date), so that I can use this when talking to other medical professionals as I progress. The reference, if you are interested is:
De Bree, E. et al (2010) Pregnancy after breast cancer. A comprehensive review. Journal of Surgical Oncology, volume 101, issue 6, pages 534-542. Link to abstract: onlinelibrary.wiley.com/doi/10.1002/jso.21514/abstract
You can buy a copy of the article online, or ask your doctor to get it through his NHS library (the NHS has a great library service).
It has the usual caveats that randomised trials cannot be done and there may well be a “healthy mother effect”, where only those who feel and are healthy will become pregnant, and therefore may have had a better chance at survival anyway, but attempts have been made to carefully match the pregnant women with non-pregnant women with the same type of cancers, to try and give it all some balance. Some of the studies have shown that there may be a positive benefit on survival following becoming pregnant (even failed pregnancies), and particularly of breast feeding.
This is only the first hurdle in the path of becoming pregnant - I still haven’t got my periods back - but I meet with my oncologist in March to talk about the next steps, so am hoping and praying that by then I have had some movement in the right direction.
If not, I will ask to see what tests they can give me, or whether coming off Tamoxifen for a while might be a possibility.
The best news is, I have now been cancer free for 2 years. Mine was HR+/PR+/HER+, Grade 2, 20/23 lymph nodes involved and I have had a unilateral Mx, Chemo (FEC & Taxotere), Radiotherapy and Herceptin. Now on Tamoxifen and heart tablets due to the Herceptin. The whoooooooooole shebang!
I’ve got an appointment with the onc for a second opinion in February. I’ve told them he needs to come prepared with information - This link will be a great help for me, thanks for posting!!!
Good luck with the February appointment Panga. Let us know how you get on xxx
After a long wait for an appointment, I finally got to see my onc.
He is very happy for me to stop tamoxifen after two years, and try for a baby.
He avoided discussing percentages, but spoke positively about my prognosis. Diagnosed at 35 (38 now) Grade 2, 2cm small(ish) lump, no lymph nodes.
He said the benefit was quite small from the tamoxifen and the research doesn’t tell you if three years is any better than two. The main benefit came from the surgery. So go forth and multiply!!
Just trying to remember the other things he said…
There is no research to say if there is any benefit in restarting tamoxifen after a long break, but did say he would have no problem prescribing it again if I wanted.
If you think you might be pregnant mammograms shouldn’t be done - but ultrasound is an option.
Zoladex is ‘out of your system’ after 28 days, so it’s safe to start trying then. He expected periods to come back fairly quickly, but maybe irratically. He recommended buying one of the more expensive sort of ovulating machines as ovulation is likely to be a bit haywire for a while.
He recommended to take pre-natal vitamins
Get help from my GP after six months if nothing happens naturally. He also said if I needed IVF, that he would provide a letter of recommendation. (He had no issues with hormones etc from IVF or pregnancy).