Interview with Lucía, an ex-leukaema patient
Lucía is 28 and lives in Polinyà (Barcelona). In 2005, she received a terrible diagnosis: acute myeloid leukaemia. She was 23 and was working as a physiotherapist in Rome with a friend. In July 2006 she underwent a bone marrow transplant from an unrelated donor which was located by the Josep Carreras Foundation. She now feels fine but there is a treatment side effect which will last forever: infertility. Lucía tells us what it is like for a young woman to live with the effects of an early menopause and painted a picture of her future.
Lucía, nowadays, with her partner Jesús.
- I guess that treatment side effects are the worse thing one has to cope with. What kind of effects did you have? How did you overcome them?
Once the storm has ended, you have to overcome its consequences. It's tough to see that things have changed but you learn to live with it and, after all you have had to go through, the long term effects are the last thing you have to worry about. You have to learn to be grateful for what you have and appreciate the fact that the result could have been much worse.
In my case, the after effects were marks on my skin and mucous membranes, muscle atrophy and loss of elasticity, dry mucous membranes, memory loss, and an increased susceptibility to breast cancer, melanomas (malignant moles), early menopause and infertility.
You have to consider that, apart from the harsh treatment; you also have to spend a long time unable to lead a normal life: lots of rest, poor physical and mental activity, etc... Your body adapts to the situation but later it suffers from that lack of effort, hence the loss of muscle tissue and the loss of memory. That is why it is strongly recommended to remain active during the whole process.
To overcome this you have to let time go by and do your best to progress day by day. You have to start reading little by little because at the beginning your ability to concentrate is minimal. You should start studying and also start exercising, and stretching, etc... You must listen to the doctors' advice and enjoy your new life.
Lucía, during her treatment
- How are you coping now? What side effects are you still suffering from?
It's now been nearly five years since I had the bone marrow transplant and you could say that I'm very well. You learn to cope better and better with the side effects.
The dryness has improved, the marks have lost some colour and I have more or less managed to recover my physical shape and intellectual form. What persists, and is most difficult to cope with, is the risk of suffering from other diseases or having a relapse as well as the early menopause and infertility. Being only 28, becoming a mother is one of my medium-term plans.
- As you say, one of the worst side effects is infertility, in your case early menopause. Did they warn you beforehand of this possibility? How were you told about what could happen?
To begin to experience menopause at the age of 23 is something that goes against nature. In a young body, some of the symptoms are that you lose bone density and elasticity. This can be treated with the gynaecologist's help by taking calcium, taking physical exercise... but you'll never be like other girls of your age.
Anyhow, infertility can't be treated. When I first started with chemotherapy treatment, I was injected with a drug called Decapeptyl which, I believe, is to inhibit ovaries from ovulating and thus prevent them from absorbing chemotherapy. However, at the end of the treatment, when being prepared for transplant, this treatment was dropped. I guess it wasn't compatible with treatment but, at the time, I didn't ask.
I assumed and realized I wouldn't be able to have children on my own, the minute I was asked to sign my consent to radiotherapy. The document gave me information about all the after-effects and infertility was among them.
It's possible that I had been informed or that something had been explained to me beforehand concerning this matter, but I can't remember. What I do clearly remember is that precise moment when I signed giving my consent.
- How did you cope when the bad news was broken to you?
It was really tough, one of my worst moments during the disease. And my parents also had a hard time seeing how it affected me.
I immediately inquired about egg freezing, but it was too late. In the intervention to extract the eggs, they need to make small incisions and this wasn't advisable since, for the transplant, all blood cells have to be eliminated from ones body, including defenses and, therefore, any sort of cut could become infected and could even lead to death.
- How do you cope with this issue now? Have you thought about some form of intervention? What about adoption, have you considered this possibility?
I still can't stop thinking about this issue. I am now more or less at an age when women, nowadays, decide to become mothers and many of my friends and relatives of my age are either pregnant or have young children. This makes one think even more often about the matter, but this not only troubles me, it also troubles my partner.
When the time is right, we would first like to try some sort of treatment to get pregnant. Some gynaecologists have told us of the possibility of fertilizing a donor's eggs with sperm from my partner and then implanting the eggs in my womb. But we were told not to start worrying about all this until the time comes when we decide to become parents.
Of course, we have also thought about adoption, even though it's a delicate and complicated matter. It seems incredible that, with so many unwanted children in the world, there should be so many limitations for adopting one.
- What would you say to a woman who is now going through this sort of diagnosis?
I'd advise her to find out about her health condition and her possibilities, and if, as in my case, there is nothing to be done, then I'd tell her that her life comes before anything else. That's what I was told. It's tough when you are told so, but that is the truth of the matter. Once you have overcome the disease, there'll be plenty of time to think about treatments or adoption.