I was diagnosed with DCIS in 1 breast mid-March and at the beginning of April had a mastectomy with some lymph node removal and LD flap reconstruction with an expander. I got my test results back last week and although there has been no spread to my lymph nodes the cancer was more wide-spread and aggressive than the docs had first thought so they have recommended FEC chemo followed by radiotherapy.
My husband and I are both 33 (but about to turn 34). We got married in Oct 2007 and thought we would wait a year or so before trying to get pregnant however my dx has altered things slightly! My surgeon and bcn knew that we were keen to have children so as soon as we saw them last week made a referral to the local fertility clinic. They were surperb and the head doc saw us the very next day. He told us that he would be more pessimistic about preserving fertility through chemo than the oncologist would be because he saw the women for whom it hadn’t worked. He talked through our options and one cycle of IVF with embryos being frozen and stored seemed to be the way forward (a few days later we found out that the PCT are willing to pay for the treatment). The oncologist is happy to wait a couple of extra weeks before the chemo starts but she doesn’t really feel the IVF is necessary - she sees the women who go on to have children naturally.
Now I don’t know what to think or feel. Any one out there who has been through similar circumstances? How did you make a decision? Are there any other questions we need to ask?
Welcome to the forums where I am sure you will receive lots of help and advice from the many informed users of this site. While you are waiting for other users to reply to your questions, you may find BCC’s publication on BC and fertility useful to read. I have posted the link below, you can download a copy or order one free of charge.
I was in a similar situation to you with a few exceptions. My cancer was grade 3, aggressive and HER 2+ and was definitely in one of my lymph nodes. My oncologist referred me to a fertility specialist and I had various tests and scans to determine my fertility at that stage. However my oncologist didn’t want to wait for me to go through fertility treatment and neither did I. Other people urged me to think about it really carefully but I knew that most important to me at that point was to get rid of the cancer.
I was also given Zoladex injections (part of a trial) to switch off my ovaries whilst going through chemo and I had one period in August before they stopped and seem to have just recently come back. I have an appointment with the fertility specialist in July. I’m hoping that the fact my periods have come back is a good sign and that I will still be fertile as I would love to have children one day in the not too distant future.
Is your cancer hormonal? i.e. is it ER or PR positive as I think it’s important that you know this as if it is, then going through fertility treatment may not be such a good idea.
I know it can be a really difficult decision to make especially if you are in the position where you were thinking about children.
I am 34, 33 when diagnosed and have today just had my last chemo delayed as my blood counts were low. But my fiance and I went through so much before coming to our decision about what we should do re fertility. I am also a grade 3, ER and also a BRCA 1 carrier so my experience will be different to yours.
We were not offered embryo freezing on the NHS because of the time constraints we were under. My oncologist agreed however that she would let me have 1 cycle of IVF but she would then put me on a higher chemo regime (FEC 75 instead of FEC 60) whether the IVF was successful or not. She said going on FEC 75 would mean I would have even less of a chance of being fertile after.
We didn’t let that put us off and we went to a fertility clinic in London. The success rate was so minimal and faced with having to go onto a stronger chemo we worked out that we had a higher chance of going ahead with the chemo and no IVF. I was not given zoladex although it was discussed but it was felt that due to me being a BRCA1 carrier it might not be beneficial.
But at a BRCA genetic clinic I went to, I was advised that given my age I should have a 70% (think it’s that or it might be 65%, sorry can’t remember due to chemo brain) chance of being fertile after. I felt this was very positive.
My periods (bless em) have continued throughout my chemo and I’m hoping that they will continue. I did ask my oncologist if I could have IVF after my chemo before I start Tamoxifen and was advised not.
I plan on going on Tamoxifen for 2 years maybe with Zoladex as well, then having a 6 month cleansing break and then hopefully try for a child before having to have my ovaries removed.
I don’t feel in a position to offer you advice because we are all treated individually (supposedly) for our cancers, so whats right for me will probably not be right for you. My partner and I were planning on children this year, so I understand part of what you are going through. But I hope just hearing that there are others in a similar position and hearing our stories helps in some way.
Are you Triple neg? I am, and went through IVF last Dec before started 3x fec and 3x tax, my onc was supportive, and wasn’t concerned about the fec, but was worried about tax. It was very difficult for me to decide to do the IVF, due to personal beliefs etc. I think at the end of the day I tell myself, if I have fertility probs with chemo I still have options and if children are meant for me then I will be successful with it. I have also decided to use the frozen embryos before we try naturally - again for personal reasons.
My onc was happy for me to have IVF as I’m tri neg. She said if the cancer had been hormonal she would have been “twitchy” about it.
I found IVF quite hard, mentally speaking, also I was very hormonal and emotional throughout. I hope I made the right choice.
Thanks so much for all your replies. My friends, family & husband have all been wonderfully supportive but its not the same as hearing from others going through it, even if we are all slightly different.
I’m ER- and PR- which is reassuring when thinking about raising hormone levels and docs have said they feel more comfortable with me having the IVF - although they have said that there isn’t any firm clinical evidence to support this ‘feeling’!
The HER2+ result hasn’t come back yet (another couple of weeks apparently). If it is positive then the oncologist will give me Herceptin for 6mths to a yr after the chemo. From what I’ve read that doesn’t seem to pose any additional risks to fertility it just means waiting longer before we try.
We also don’t know about a genetic link - they will do the tests after my treatment. My mum was dx with bc last Nov. She had a lumpectomy in Dec and then rads Mar/Apr - finishing just in time for me to go in for my surgery! At the time I found my lump we thought mum was the only one in the family so my GP assured me that mine was very unlikely to be anything sinister. However, since then my aunt has said that she is sure my great, great grandmother died young from bc which seems a long way back but hospital are now interested in looking for a genetic link. Sometimes it seems hard not knowing because we might make different decisions if we knew one way or the other but then there is so much to think about anyway that perhaps it is better not to have to take that in to account. I think I read somewhere that only a fairly small percentage of bx are genetic so I guess the chances are that its not but then I read something else that it seems more likely to be so if the bx is triple negative but then we don’t yet know about HER2+ - aargh!
Ang - I’ve had doubts about the IVF due to my beliefs but have spoken with a number of friends who’ve had IVF for infertility issues and now feel that I’ve come to terms with it especially when thinking about how many women get pregnant and then something is wrong within the first few days so they just think they’ve had a late and heavy period. We haven’t really talked about using the embryos versus trying naturally - I think I’ve decided I’ll cross that bridge when/if we come to it.
Nardy - sorry to hear that your last chemo has been delayed. I imagine that must be very frustrating and hope that you are able to move forward again soon. Your post has made me realised that there are still things I don’t know about my chemo - what do the numbers mean?
Ruby - I think you were right about not waiting. If I’d had any spread we wouldn’t have waited either - I would have thought that at the end of the day to have kids I’ve got to be here & well in order to have them. I do hope all goes well for you.
It is a little frustrating but really because I have a holiday booked and I don’t want to spend a week of it feeling pants. But I am doing my best to see if I can boost my levels which means no partying and (less) wine.
When you say numbers, do you mean the FEC 60/ 75? If so, these equate to different strengths of FEC. 60 being less strong than 75. My Oncologist said there is one higher but you would be hospitalised if you had it.
Strength is determined by the type of cancer you have. But don’t worry about this. Most people I have spoken to didn’t know what strength they were on, it’s only because of the fertility aspect that it came to light.
Hi Zoe,
I have 2 friends who had mastectomy, chemo and rads. They both got pregnant about 1 year after treatment naturally. I,m not sure if they were ER pos though.
Best of luck to you
love Andrea x
Great to hear that there are plenty of women who go through chemo and come out the other end with their fertility still in tact. I wasn’t one of those women unfortunately. I was 39 when diagnosed and was considered very fertile. 6 lots of EC put me into sudden menopause… It does happen and though my onc thought i had a reasonable chance of being able to conceive once my treatment was over, it is now not going to happen. You need to weigh things up, I don’t regret having chemo and for me, I couldn’t have waited either, I just needed my cancer treatment to take priority over anything else… it means I’ll never be a mother (unless I adopt of course) but it was a decision I took and stand by I guess. I wish you all the luck in the world. Carrie x
I was also told not to wait, for my fertility treatment, as they wanted to get on with treating my cancer, it was also triple negative. I saw a fertility expert and she said if i had the ivf, she would give me a 50% chance of an embryo being successfully implanted once i wanted to get pregnant. We were also about to start a family, i am now 36, but we decided not to wait for the fertility treatment. Have done 4 courses of fec, and halfway though taxotere, and my periods have gone completely back to normal. My sister is very fertile and my mum was fertile until she was 45, she had my little brother when she was 39, so that was an important indicator in me taking my risk not to get the ivf treatment. It helped that my sister was prepared to supply egg donation, if i need it later in the day, plus i am open to adoption. Its a very personal choice.
It seems that the return to fertility (or not) is a bit of an uknown. There are clearly both good and sad stories out there but who ends up with which story seems a little less easy to predict. As a result and because we are in the fortunate position of having some time before my chemo and a sympathetic PCT who are willing to pay - we have decided to go ahead with the IVF. I have an appointment with my doctor on Thursday to find out more about the next step. I think he would have seen me sooner but I need to have a few days away for my Nan’s funeral. Thank you all so much for your comments - you have really helped me to think through the issues and feel less alone while I’ve been thinking.
Nardy - I picked up on another thread that you have now had your final chemo - great news. I hope you’ll be able to get away and enjoy your holiday now. Do you know what surgery you’ll be having? I was really worried and scared before but the hospital staff were so helpful and supportive. The surgery and recovery has not been nearly as bad as anything I imagined. In fact, the worst thing was probably the hospital food! Definitely, not many vitamins or other nutrients in those meals! I’m hoping I’ll have the same experience with the chemo - imagination worse than the reality.
Carrie - thank you for sharing your experience and I’m really sorry that it did not work out well for you and I wish you well for the future. A couple of my friends have just adopted a family of 3 - hard work but I think they are enjoying it! However, adoption isn’t the only way to find an outlet for maternal feelings. Another friend provides respite care for a teenage girl with autism and I work with young people all day anyway. I hope these remarks don’t come across as inane platitudes as I’m sure you know all these things and have plenty of other people making similar ‘helpful’ comments! But I do hope that you find your own way through the difficulties and sadness.
My situation is different to yours as I do have children. I was dx in dec 07 aged 34. If it helps so far I have had 3 epi and am on my 2nd tax and my periods are pretty normal during chemo. They only stopped for the first cycle of chemo and them come back regularly - every 27 days without fail. As you say everyone is different for some chemo stops periods and others it doesn’t. I was told I had a 50/50 chance of an early menopause but that isn’t he case for me. I was hoping they would have stopped as the cancer I has was er+.
