My daughter is 20’s & in the 4th year of her 4th remission & has had 2 bone marrow transplants due to Acute Myeloid Leukaemia. She’s been refused NHS funding for egg retrieval/storage due to her situation not being “exceptional enough”. She’s been told that menopause will happen very soon due to all the treatment she’s had over the last 10 years (she was 10 years old when she 1st became ill & too poorly to think about this procedure back then). It costs up to £3,000 for 1 attempt at retrieval but cannot afford this privately. Are there trials that would help her? We’ve no idea how to go about this? Macmillan aren’t able to assist with funding as it’s not “essential”.
Thank you for your help.
B.
Dear B.,
I think, very unfortunately, that the refusal to retrieve and store eggs by the NHS is probably the correct decision. Her case would be very exceptional indeed if this strategy was to be ultimately able to lead to a successful pregnancy.
I deeply regret the rather shocking and what I regard as disreputable announcements made by those running some private clinics, strongly advising completely normal women to freeze their eggs as an ‘insurance’ policy. In my view this is presumably done for profit and is therefore highly exploitative. I say this because I have managed to get the Department of Health to release the current success rates for pregnancy after egg storage across the whole of the UK, and it turns out that this success rate is around only around 2.2% live births with a few extra miscarriages. Bear in mind these successes have been almost entirely achieved in normal women who have never been irradiated or used chemotherapy – they are simply doing it for social reasons because they have been persuaded by this publicity and the suggestion of a much better chance of a pregnancy than is actually achieved.
In your daughter’s case the likelihood of a pregnancy is likely to be very much less because she has had very powerful irradiation on more than one occasion. So the chance that she will produce eggs good enough for freezing and storage is going to be considerably lower. It is true that she may have a small chance of spontaneous natural pregnancy, but these IVF technologies are not apparently helpful.
I fear that the time to freeze her eggs would have been before any leukaemia treatments were started, but I have no doubt there are likely to have been very good reasons not to do this when her disease was first diagnosed. Moreover she was still a child then and when a child is critical ill other priorities sometimes regrettably take over. Charities like the Genesis Research Trust try to encourage this early intervention and will continue to do so, but the doctors treating these cancers quite properly may not put this issues high enough on their treatment planning.
I am sorry to give you this news.
Robert Winston