Dear Professor Winston,
I’m so pleased to find this page, thank you. I did a cycle trip for Genesis, & met you beforehand! I was looking at your website as my daughter has asked me which charity we could raise money for that would be relevant to her situation. Hopefully we’ll be able to do a trip together for Genesis once her problem is over. I will make a donation immediately to thank you.
My daughter had a teratoma on her ovary which was discovered following torsion when she was 11. The whole ovary was removed during emergency exploratory surgery by a general surgeon – all we knew was that she was in a huge amount of pain which had started when she jumped out of her top bunk that morning. Tests throughout the day were inconclusive & she had surgery that evening. In retrospect I think she had been having pain beforehand.
She is now 26 and has been having mild abdominal pain for a few months. Last month an ultrasound scan confirmed she has a 5cm teratoma on the remaining ovary.
I have searched for information about the best chance of preserving fertility and also preventing very early menopause, but I have been unable to find anything relating to someone who only has one ovary. The radiographer suggested monitoring it, but the surgeon wants to operate soon, possibly next week.She will try to remove the teratoma only, but cannot be certain this will be possible.
She has no plans to have a family in the immediate future, but she gets married to her lovely fiancé next year.
Any advice on what she should do would be very gratefully received. She has private healthcare through her work.
Do you think she should have the surgery and then look into egg or embryo freezing?
Best wishes,
L.
Dear L.,
A very unpleasant dilemma. Unfortunately, teratomata of the ovary are very frequently bilateral so this outcome is not at all unexpected. I think your surgeon is right. If I were in her place I would also operate and try to remove the tissue which is the tumour. I also agree that the outcome is somewhat unpredictable as these tumours, which almost always benign can be quite destructive of the surrounding tissue. So I fully understand that your surgeon is not committing herself nor trying to give false hope.
I think the thing to hang onto is that this cyst is only five centimetres and, with careful dissection and repair of the ovary, a good part of her remaining ovary is probably capable of rescue, Five centimetres seems large, but it is not really. I’ve removed cysts of over 30 centimetres and enough ovarian tissue could be saved to give adequate function afterwards. So a lot depends on how well the area around the cyst is clearly demarcated and whether it might shell out.
I am not going to pretend to you that these tumours, though nearly invariably benign, are good news for fertility. There are vast number of different kinds of ovarian cyst. But teratomata and dermoids, even when removed completely, frequently leave an ovary which does not always respond to the hormone stimulus to ovulation. They do not necessarily cause an early menopause – indeed that is rather unusual. But they do damage much of the substance of the ovary. The good news is that the ovary contains nearly all the primordial follicles (the little seeds which will become eggs) not deep in the substance or stroma of the ovary but in its surface skin – sometimes referred to as the capsule. This layer is remarkably only a few millimetres thick. In a young woman of your daughter’s age there are likely to be 2 – 300,000 of these primordial follicles almost entirely situated in the this thin surface capsule. Hopefully your surgeon will be able to preserve some of this together with its blood supply as it is uncommon for there whole capsule to be involved, unless the teratoma is one of these rare malignancies. But this is genuinely unlikely in view off her previous history of a similar cyst when she was younger.
Whilst I am not as great advocate of egg freezing, I think this is something worth thinking about once she recovers from the surgery. She is young enough to get some benefit hopefully. In the past we actually froze slivers of the capsule and kept them in liquid nitrogen in the hope that a technology would be developed when such tissue might yield matured eggs after stimulation under laboratory conditions. So far this has not been valuable but I think it is still a promising idea. The other strategy which has worked is to freeze strips of the varian capsule and then at a later date transplant them back into what remains of the ovary. This was pioneered by Sherman Silber many years ago in the USA who is a and extremely accomplished surgeon. Years ago we operated together and he may remember that. As far as I know he is still at the Infertility Center of St. Louis, 224 South Woods Mill Road, Saint Louis, MO, 63017, USA. silber@infertile.com) . This approach has also been used by Jacques Donnez in Belgium (Catholic University of Louvain and Société de Recherche pour l’Infertilité in Brussels) who attended courses in microsurgery I ran many years ago and has continued to use this approach with some success. Neither of these surgeons though have, as far as I know, tried this particular approach with ovarian dermoid cysts but I may well be wrong about that.
A reference to a very recent paper of Sherman’s is: Silber SJ, DeRosa M, Goldsmith S, Fan Y, Castleman L, Melnick J. “Cryopreservation and transplantation of ovarian tissue: results from one center in the USA” J Assist Reprod Genet. 2018 Sep 25. doi: 10.1007/s10815-018-1315-1. [Epub ahead of print]
I am sorry not to be more helpful. Let me know if you need anything else.
We are all so grateful to you for your support of Genesis Research Trust.
Warmest wishes
Robert Winston