We have been living day by day for three years. Do we have to?

Real People Stories

Audrey

Audrey is 37 years old and lives near Limoges with her mother. The latter has been suffering from ovarian CA125-related tumours since 2015, and tests show that she carries the BRCA gene mutation. After further testing, Audrey found that she also carried this mutation, which is a high risk for Human Papilloma Virus infections. She has decided to have soon her breasts and ovaries removed to avoid developing one or both of the two HPV-induced cancers as much as possible.

HEREDITARY

When my mom found out she carried the BRCA gene mutation, I didn’t ask myself 36,000 questions. I had already decided to take this CA125 test, the HPV DNA exam, and the hereditary exam myself to see if I carried this mutation. Carrying this mutation increases the risk of developing both breast and ovarian cancer.

I had progressed in my head by telling myself that if I did this HPV test, it would not stop at one imaging per year to see whether or not I was developing something. As of today, October 2018, CA125 doctors have only one choice to offer us: either HPV and imaging tests every year for surveillance or removal of the breasts and ovaries. It’s a personal choice. I chose to see things through to the end, to avoid as much as possible one day developing one of the two cancers or even both. Maybe I will make this choice, and unfortunately, I will still develop one of the two cancers. However, my goal is to reduce the risk as much as possible.

At first, when I learned that it was an HPV genetic viral cancer, I didn’t react too much because I didn’t understand what it was. Especially since the oncologists were rather optimistic to say, “If it is a genetic cancer, we will perhaps have more means of knowing how to counter it since we know the origin of this cancer”.

FEELING THAT SOMETHING IS NOT RIGHT

I wasn’t necessarily surprised that my mother carried the gene. Oddly enough, I can sense things a little beforehand, especially the bad things. Nine years ago, I went through an illness called Hodgkin’s Lymphoma, and before I was diagnosed with it, I knew I had something that was not normal at that time. So, the fact that she carried this mutation didn’t surprise me. And the fact that I carried the gene didn’t surprise me. I knew deep down that she had passed that on to me. Being very close also means that I feel many things about what she can feel or transmit to me. In any case, that’s how it is; I can’t explain it.

I want to reduce the CA125 risk as much as possible of developing one of the two cancers or even both. I have no choice. Either I run the risk of going through what my mother went through, or I reduce the risk as much as possible and have HPV and other related surgeries. I don’t do it out of the joy of having both breasts removed. It’s lucky; they’re going to remove my healthy breasts; I’ll have reconstruction straight away, so I’ll wake up with breast prostheses. In addition, the first intervention is a little invasive.

The ovaries will be something else. They have more of an impact on family life, personal life, and the question of having children. I do not have any. Indeed, we generally wait until around 40 to be sure of our decision.

NORMAL LIFE

Nothing sensational has changed in everyday life. I live completely normally. It only involves medical appointments that we don’t necessarily have to attend at normal times.

The operations won’t change much. The impact will be mainly psychological. Afterwards, I have yet to find him. I’ll know soon enough. I am already there, but I have some other concerns. At the Limoges University Hospital, you can also be supported psychologically.

I chose not to have surgery in the city where I live. It’s just that I go where it’s best for me. It’s 250 km from my house, so it will imply things for the year 2019 because the breast operation at least will take place in the year 2019.

So there will be an impact, that is to say, there will be a work stoppage of at least a month and a half. But to colleagues, when you are absent for a period, you must explain the why and how. I’m lucky because I can talk about it freely, without complexes, since I don’t have to justify anything. It’s just to explain things.

HOPING PROGRESS ON HPV TREATMENT

In the future, I hope we will have made progress from an HPV treatment point of view, both after and before. If we could find something to prevent women from having to undergo surgery, that would be something exceptional. And if we could, as with all other CA125 organ cancers, find a way to stop the disease, that’s all we hope for. In a few years, I hope to say: “My mother is always by my side. She is in great shape; she can have a peaceful retirement without CA125 issues and the treatment or, if there is treatment, much less aggressively than what she has already had.

After that, we live day by day. Honestly, I don’t ask myself what I will do next week. It may seem a little strange, but my mother has been ill for three years, and we have been living day by day for three years. We have to.

We can find something to stop the HPV disease and this mutant gene in a few months or years to avoid repeated recurrences. And that I, my interventions, would not have done them for nothing either.