Tuesday, 24 March 2015

Angelina Jolie's ovaries and me

Two years ago Angelina Jolie told the world about her medical choice to have a preventive double mastectomy. She has a fault in her BRCA1 gene. Put simply, BRCA1 is one of the genes responsible for stopping cancerous tumours from growing in breast tissue. A fault in the gene means it doesn't do that job properly - this put Angelina at an 87% risk of developing breast cancer. Having the double mastectomy reduced this risk to 5%.

Angelina's faulty BRCA1 gene also put her at a 50% risk of developing ovarian cancer. Today she has shared with the world, in her article Diary of a Surgery, that she has now had her ovaries and fallopian tubes removed in order to reduce (almost entirely eliminate) this cancer risk.

What Angelina has written in Diary of a Surgery has shaken me up.

I have a faulty PALB2 gene. In the same way that Angelina's faulty BRCA1 gene put her at high risk of breast and ovarian cancer, my faulty PALB2 gene puts me at high risk of breast and ovarian cancer. Of course, I've now had breast cancer, so that risk has already become a reality! My medical team are doing all they can to reduce the risk of that same cancer coming back - that's why I've had 6 cycles of chemotherapy, a mastectomy, and (I'm about to start) 3 weeks of radiotherapy. As well as reducing the risk of the cancer I already had coming back, the mastectomy reduces the risk of a new cancer in that breast. I am having the other breast removed to further reduce my risk of a brand new breast cancer as soon as my body is healed from radiotherapy.

Having a double mastectomy was not a difficult decision for me to make. In all honesty, it's possibly the easiest and quickest decision I've ever made in my life. 

Simple as that. I don't want to die, and my breasts were going to kill me. Good riddance. (Besides, reconstructive surgery means they are still kind of there - albeit minus a nipple and with a couple of scars.)

The ovaries on the other hand have been a very different matter, for two reasons; one is about health, and one is about children. Having your ovaries removed puts you instantly in the menopause - this means amongst other things that you can't have children, and that you are at an increased risk of osteoporosis and heart disease.

I've done a lot of thinking about these three things and I've had a lot of arguments about these three things. These are my personal views:

Heart disease: I'm not too worried. While the family I had has been obliterated by breast and ovarian cancer, hearts have always been healthy. Big, strong, healthy hearts (it's all the love, man!) I don't smoke, I do exercise, I can look after my heart ok.

Osteoporosis: I am worried about this. There's less I can do to prevent it, and from what my doctors have told me, it's more of a risk. If I do live for a few more decades, I'll have to be really bloody careful not to trip over my own feet and continually walk in to things the way I do now (Twice in one day last week I walked in to a door - forehead and hip. Clumsy idiot!) The sooner I have my ovaries removed, the more the risk of osteoporosis later in life increases, so there's an argument here for holding on to them as long as possible.

Children: This is the trickiest one. Some of my medical team seem pretty obsessed with me keeping my ovaries so that I have the option to have children in a few years time. I disagree. I don't think I should have children. First of all, if I get pregnant and there are any of my original cancer cells left in my body, it will be asking for trouble in the same way that waving a blowtorch round in a petrol station is asking for trouble. Secondly, there would be a 50% chance of the child inheriting the faulty copy of the PALB2 gene and facing a high risk of cancer later in their life - particularly if I had a girl. If in a few years I am still alive and kicking, and I'm in a relationship, then I'd love to consider the possibility of adoption. But right now, I'm single and I'm still undergoing treatment for breast cancer and so I guess staying alive has been my immediate concern. But the combination of hassle from others about keeping my options open about having children, and my concern around risk of osteoporosis meant that when I was discussing my ovaries with my oncologist registrar a couple of weeks ago, I said I'd keep hold of them for now. Everyone tells me the chances are I won't get ovarian cancer in the next five years.

Then I read Angelina's Diary of a Surgery article today, and as I said, it's shaken me up.

"...two weeks ago I got a call from my doctor with blood-test results... “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “[the blood test] has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.
I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren. 
I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.
That same day I went to see the surgeon, who had treated my mother. I last saw her the day my mother passed away, and she teared up when she saw me: “You look just like her.” I broke down. But we smiled at each other and agreed we were there to deal with any problem, so “let’s get on with it.”

Nothing in the examination or ultrasound was concerning. I was relieved that if it was cancer, it was most likely in the early stages. If it was somewhere else in my body, I would know in five days. I passed those five days in a haze..."

Angelina goes on to describe how the PET scan was clear meaning that while early stage cancer was still possible, at least it wasn't a full-blown tumour. She then had surgery to remove her ovaries and fallopian tubes. During surgery a benign tumour was found, and luckily that was all.

Reading all this took me back to my own diagnosis, and to the emotions you get when you are waiting for test and scan results. When I say emotions... I mean fear. You know that you are high risk, and those test and scan results are going to mean the difference between living and dying.

I tell people all the time to listen to their gut feeling when it comes to their own bodies. I've been right about mine enough times. And Angelina's article today has prompted me to pull my head out of the sand I buried it in in order to get some peace from everything "cancer" and the opinions of everyone else about whether or not I should have my own children, and go back to the oncologist and demand my ovaries be chopped out as soon as possible. The left one in particular, I don't trust it. It's been a troublemaker in the past.

I don't want osteoporosis, but more than that I don't want to die from ovarian cancer.

I do want children, but I don't want to get pregnant and risk my life.

Like Angelina, I want my ovaries out.


  1. I don't have children. I was dx at 32. I carry the ATM gene which puts me at a moderate risk for breast cancer. Harvested my eggs prior to chemo so I have 16 chances. I have been debating whether or not I should get pregnant. Next year will be my 5 year on tamoxifen. My Onco wants me on it for 10 years.

    Having children is important to me but it is now complicated.

    My tumor was estrogen + (99%). What to do. There is no evidence showing getting pregnant can bring your cancer back. I wish there was so I can just give up on the idea of getting pregnant. I know of people who have had babies after cancer and are doing well. But like my Dr. mentioned this could just mean they were meant to do well after cancer, regardless. Again, no evidence connected to this.

    Surrogacy is expensive.

    Adopting is not an option for me at the moment but I love how quickly you have come to the conclusion that it will be your option. That's great because you don't have to stress about it anymore. I think I am not at that point yet. Next year I will know.

    I am worried about stopping tamoxifen after 5 years. I don't have money to rent a uterus. And the thought of doing in vitro scares me because of the estrogen levels. I have no choice but to do in vitro because the ATM gene, if my fiance carries it, we will be in trouble. The kid can get ill before the age of 5. It is an awful condition, including leukemia. UGH!

    By the way, when doing in vitro you can test the embryos for mutations prior to insertion. Have you considered freezing your ovaries or speaking to an Endocrinologist about your options? I don't mean to create any doubt in your case so please forgive me if this is how it sounds. I just want us all to know all the options we have. But at the same time, since you are OK with adoption, I think you will be just fine. I might end up doing the same.

    What a train ride, right?

    Like you, I am planning to remove all my reproductive organs (in my 40's). I believe that is a wise choice after learning about your genetic risks. Good for you!! I support you.

    It is hard when we face cancer at a young age. If I had a child, I wouldn't have to worry about all of this...

    May you continue to do very well for many years to come.

    1. Argh!!! I keep losing my replies to this :-( So a very quick thank you for your response, and all the best in finding a decision you're happy with, all of this is a nightmare. Xx