Sadly I do know women who have gone on to have babies after bc who are no longer here after developing secondaries either during their pregnancy or just after the birth including Annie, Sixpen, who used these forums regularly and sadly died while her son was still a baby.
That said I’m sure there are lots of happier outcomes too. I have no idea of the official stats and risks on pregnancy after bc.
My oncologist specialises in younger women and their fertility issues which was useful since fertility was a fairly big issue for me when I was diagnosed (and I scored 8/8 for oestrogen sensitivity although there wasn’t spread to the lymph nodes nor any sign of vascular invasion). Her advice was that there was (in cases like mine) some evidence that natural pregnancy could actually offer some protection against recurrence but that she would be ‘wary’ of IVF or egg donation. If I had decided to go for egg donation, they would try to find someone who had had a similar prognosis to me and draw up some idea of probablility based on that. Her advice was to consider surrogacy.
Likewise, Belinda. I was only contacted today by a very old friend, via FaceBook, who lost his wife of 17 years to BC, leaving him with a 2 1/2 year old daughter, now just five. She must have been diagnosed during, or just after her pregnancy. Heartbreaking.
Belinda I remember Sixpen Annie’s moving personal contributions too. She had been desparate for a baby and waited the ‘required’ time after treatment, though the pains she was having were part of prenancy but they turned out to be bone mets and she died when he was months old.
Molennium, what about trying other options like adoption or surrogacy?
I know a child who is 7 and her mother is 61 - the child is bullied at school because her Mum looks like the other childrens’ grannies.
As you say, you will do what you will do. Good luck.
Kinden
Hi Kinden, yes I remember Annie’s posts too. I re-read some of them last night. A lovely lady gone far too soon.
Hi Jenny, I hope your friend and his little girl are coping.
Heartbreaking, just too much sadness.
Love Belinda…xx
This is a really interesting thread. I was diagnosed with bc 5 days away from
egg collection of my first ivf cycle. I now
have embryos on ice, but wonder whether I should try and find a surrogate to carry them for me. I was 100% er +.
Al
xx
the thing is we dont actually know if pregnancy, or IVF or other hormonal things are the ‘cause’ of BC they may just be incidental.
eg women are now waiting to have their family in their 30s and 40s than teens and 20s and women are also more likely to get BC in their 30s and 40s than teens or 20s… women are also far more likely to have IVF in their 30s.
i think you do have to weigh up your physical wellbeing with your psychological wellbeing and some women would rather have a child even to the detriment of their physical health…
my plan was to have a baby after treatment as i wanted to have a child who was part of me and my partner even if i ended up dying then i felt a little piece of me would be left with him.
anyway it wasnt to be as the chemo has blasted me into the menopause and i will need to get my ovaries out due to having BRCA2, which i wouldnt want to risk passing on anyway.
if we all went along not taking risks ‘just in case’ we wouldnt leave our houses to cross the street or drive our cars or go on holidays…
i know everybody is different and different people have different views on whats important and whats not and for me whats important is quality of life not quantity… id rather know that i did the best with what i had, than live to old age with lots of regrets.
but we arent all like that and its good to accept other peoples views and opinions.
Lulu x
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Thanks for all your comments. I had grade 1 cancer, a small tumour, some focal DCIS and no evidence of spread to lymph nodes. So it appears my life expectancy is now close to normal. However I am now six years post diagnosis and my chances of having a child are now minimal although I could afford egg donation if I could find anyone to agree to do it.
I will have to weigh up the advantages of having a child (not having ever had one) against the advantages of freedom from responsibility and the worries that children can bring. Children can add to the stresses on relationships as well. So not a decision to be taken lightly.
I will just have to keep pondering until I reach a conclusion.
Mole
Good luck with it all Mole.
ms molly
i didnt mention dismissing other peoples opinions i said we may have differing opinions and its important for others here to accept them… eg palomas post at the start of the threat that having a baby at 54 by egg donation as an ‘insane plan’.
sorry for the confusion.
Lxx
Me too Lulu - sorry - a complete misunderstanding.
I absolutely agree on that issue by the way - the double standards over the ages men and women are “allowed” to have children drives me bonkers.
NB I have already fostered two teenage children so I have some experience of looking after children who are not mine. Whilst I found it was rewarding I would still like to have my own child
Mole
Hi All,
I’m fairly new to this site, and am BRCA1 and I didn’t really have any practical support in my local area when diagnosed young so got on with it myself but am finding now I need some support to move on a little further seeing as my ovaries need to come out now too…and really wondered whether to make my comments but here goes…
It’s been 10 years since my diagnosis, I was 29, mastectomy, on a clinical trial with taxotere, doxorubicin and CMF chemo, rads, other mastectomy with LD reconstruction, nipple reconstruction and nipple tattooing, removal of fallopian tubes (unrelated gynae problem). Mother had lumpectomy. Sister died at 28 left 2 girls aged 8 and 1, who are now 2 wonderfully beautiful girls with a sensitive outlook in life and a wicked sense of humour (thanks to our side of the family)!
All in all I can say that in that time, I had somewhere buried whether I wanted children, some days I did, cried when finally the tubes came out thinking the choice was taken away from me, not only that I didn’t have a partner throughout and found it really difficult meeting guys.
When I did meet someone at age 36, we talked about children and decided to try IVF. At no point did my onc say we couldn’t, in fact he said that was our decision, obviously he based this on my personal cancer diagnosis, which as mentioned by others here is different from one person to another.
Because I’m BRCA1, I questioned him about this and again he said it’s our decision and none of us know what is around the corner but was happy for us to try and so we thought about this long and hard. After all I can count on my hands the times the ‘experts’ have said ‘you won’t be able to work through chemo’ - I did, ‘you can’t go out socially/drink during this chemo’ - I managed to work out what days I could and did, ‘You have a 50/50 chance of survival’ - I asked them for this and I’m the other 50 at this time thankfully.
I guess my big dilemma was if I did become pregnant, I could be passing my gene to my children. Again and to be really honest, possibly the idea of the child being a part of me and my husband took over with the thought that maybe in the future there will be a better solution for having the BRCA1 gene if passed ie. gene therapy - was I being hopeful?, blocking it out? thought there might be a chance I wouldn’t pass it on? all of the above? - I can’t tell you but all those thoughts were through my head but we made a decision and went ahead. We tried it in Ireland (where I am now living and toing and froing to London), I was 38 but it didn’t work and unfortunately they didn’t liaise with my onc and decided not to give me oestrogen which I could have done (it’s what you’re dealing with sometimes). BTW the consultant on the day of egg collection said 'don’t be surprised if we don’t collect any eggs considering your history - they collected one good one but immature!
Went to a London Clinic, where they specialise in a slightly higher age group and having no confidence in Ireland researched this London clinic where they did a test straight away to determine the likelihood of my eggs being used after bc. This is what they said:
‘The AMH test we did has shown a level of 0.98 pmol/l which is quite low and is consistent with a reduction in ovarian reserve. In your age group looking at stats for AMH levels of 0.1-1.0 we have 14 cycles started, 13 reached egg collection with an average of 2.6 eggs collected, 9 reached embryo transfer with an average of 1.6 embryos transferred and 3 became pregnant, 1 miscarried and the other 2 delivered live births. This is a small sample to be talking about percentages but this gives a pregnancy rate of 21% per cycle started and live birth rate of 14% per cycle started.’
Based on this result, we decided not to do IVF and parked the whole children thing for a bit.
Last year, aged 39 we discussed egg donor. UK and Ireland have laws that the child produced by an egg donor is allowed at the age of 18 to find out who their ‘biological’ mother is ie. the donor. I’ll be frank now and please I hope not to offend anyone as this is our experience, we didn’t want this mainly due to me not wanting to explain to people that it was an egg donor baby whilst pregnant/born - is it because of being judged? probably I’m only human, knowing that we can make the decision to tell our child (if lucky) later in years that the child is ours by fact of I would still deliver her/him and we would be bringing them up and also I really didn’t want my child seeking out their ‘biological’ mother who donated their eggs for a holistic/financial reason – selfish? I guess yeah. All of these thoughts do come up and every single person has to decide if this is OK with them, in our case we didn’t choose London for all of those reasons, our decision.
I am now aged 40 and we have researched a clinic in Barcelona on 2nd May to start the search for an egg donor plus my sister lives in Spain and she said in Spain they have a holistic view to egg donations and are screened responsibly (Cost 9100 euros, no waiting list). The law says an egg donor giving their eggs is a donation and cannot be traced. A friend of ours never wanted children and met her husband late in life who had egg donor at 46 and then 47, now has 2 children with the same egg donor at this clinic.
If this doesn’t work, I will have my ovaries out shortly or if it does I will get them out after the pregnancy to then tackle HRT. I know it sounds like I’m simplifying this but I take it one step at a time, I have to.
Don’t get me wrong, it still gets me with the sleepless nights up to each ultrasound and CA125 test every 6 months and every time I have a twinge or feel a ‘lump’ I work myself up and waiting for the results in the consultants office hoping he says ‘They came back OK’ is when I relax and think of what I’m doing tomorrow.
I guess my point to my long winded version is that we all have to make decisions based on the medical, emotional, physical information at hand and once we have discussed this with our partner and consultants, we really are the ones that will make that decision.
Can I also say that my nieces are now 20 and 13 and they have told me that it has been hard not having a mother. But they also say that they feel so close to me and both sides of the family that the bond is very strong and they have become wonderful girls that really make the most of their lives. We are very conscious of the hard decisions they will make as young women regarding preventative actions such as mastectomy, genetic tests and we are right by their side for the two-way support that has been going on throughout their lives. They have their own wonderful personalities and they are getting on with their lives enjoying school, college, friends and family - I’m very proud of them!
Mole, all the best wishes for whatever you decide, I know it’s so hard but like you say you should explore and research what you can so that you know in yourself that you both come to terms with your decision as best as you can.
Lulu, thanks so much for that website for mothers over 40, it makes for just interesting reading whilst we are attempting our course and I like her humour!
Thanks for listening, I just felt like telling you my experience and where I am at. Like MsMolly, I also feel there needs to be more research done about pregnancy and bc also with brca1/2 carriers who have never had children and especially for the next generation of carriers where this will come up. Hopefully this can be raised at the Family History forum in London on April 23rd, is anyone else going?
Purdie x
Hi Purdie
just wanted to wish you well - your story has moved me so much, I didn’t have much understanding of the issues, to be honest, having 2 children by the time of my first dx aged 38.
I hope you and Mole and all the other women with this dilemma find the answers that are right for each of you.
love, monica xx
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Monica,
Thank you so much for your kind words - every time I read someone’s experiences on this site I have real empathy and sorry that you were so young too, it really makes me angry but also stronger that there is much needed support out there which I just wish I had before.
Hubby and I are pretty much so tight that it would be enough for me just for it to stay as the two of us but at least we are not going to have any regrets that we didn’t try and after 10 years I have become to believe that I am pretty lucky so we will see what happens…
Msmolly,
Thank you so much, I hadn’t even know Donor embryos was an option, jeez I had thought I was so with this resarch wise and what about tunnel vision so now that brings a new dimension to this also. My first reaction was what are the chances of the donor embryo meeting their siblings - I know what some people might say how far fetched am I? But is it? well i checked this link of the clinic I am going to institutomarques.com/en_reproduccion_14.html and it explains it somewhat,‘The system has been designed so that embryos are exchanged between Autonomous Communities or countries.’ But you know it can happen - oh god I’m going to have to get my head around this too - ha another dilemma but I’m grateful msmolly for you raising it as it is another option that I can ask for when going for my appointment so thank you very much.
Just read that article, very interesting - i found something from another site which goes into into it a little more: sciencedaily.com/releases/2010/03/100325214550.htm
Hear, hear to living normally!!! And doesn’t Sam Taylor-Wood look good, thought I was doing well with a man 5 years younger : )
Purdie x
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msmolly,
Ha about the twins, hubby said he also wants a dog and 2 cats so I can imagine how crowded it could be if it works out ha ha…but that is promising knowing it’s the same clinic…
Totally agree with you about the research…oh god how head wrecking to know it was half and half for and against - god that would drive me mad…knowing me I would be over to my onc asking loads of questions and he always grins when he sees me coming in with my list in my hand…drives him insane I think!
thanks again and mole hope a bit more of this info was useful…
I will let you know how I get on when back…
Purdie x
yes purdie I shall be extremely interested. What I liked about egg donation is that the success rates are really high, they depend on the age of the donor rather than the person carrying the child. But I am worried about the surges of hormones, so embryo donation sounds good, although my partner and I would have no biological connection with the child then whereas with egg donation you could fertilise it with the sperm of your boyfriend or husband.
I still don’t have a firm view of what to do but it’s good that so many people have contributed advice