I have never ever compared myself with Angelina Jolie before, but I am now proud to actually say that both of us have undergone prophylactic double mastectomies due to a faulty gene.
You can not have missed the announcement from Angelena about her choice and surgery, which I believe she did with such dignity and pose, but if you did it can be found in The New York Times.
It is four years since I had my operation and it was what actually spurred me on to blog. So let me tell you my story.
Me with Maxi after the mastectomy, I came home with drains in
There is and was a lot of cancer on my maternal side of the family. But we never actually contemplated any genetic link at all, even when my mum’s younger sister was diagnosed with a rare form of primary peritoneal cancer we just thought that we were unlucky and concentrated on getting her through the treatment. During this time she was offered a test as part of a trial to check for certain genetic “spelling mistakes”. A number of months passed and we just all got on with our lives and didn’t give the test a second thought.
After what seems like a long time, my Aunty was called in to see a genetic counsellor and was informed that she carried a spelling mistake in the BRCA2 gene. At this point the testing was opened up to immediate family members and also to the children of her siblings who had already died of cancer. My Mum decided to have the test and went to pretest counselling and joked with us that she would outlive anyone and that cancer would not get her. So it was such a shock to her when the results came back and she too carried the faulty gene.
At this point Mini, my second child was around one I was offered the test too. MadDad and myself went along to meet the pretest councillor and discussed all the implications of having a positive test. We left those meetings really feeling as though I needed to have the test and I need to be aware of what my risk would be. Do I had the test and two weeks later we went back for the results, only to be told that I too carried the faulty gene too.
We went home reeling, especially as I had been told that my lifetime risk of breast cancer was over 80% and my lifetime risk of ovarian cancer was in excess of 60%. However, we decided to look up on this as a positive thing and do the only thing I felt able to do which was to gather as much information as possible about treatment and screening. I had a mammogram and an MRI on my breasts, but both were really hard to interpret due to my age (the younger you are the more dense the breast tissue is) and also the fact I had large breasts.
It was around this time that we made the hard decision that we were not going to have anymore children and that I needed to be well for the two I had and to have my ovaries and fallopian tubes removed. I did this first as there is some studies that shown the risk of ovarian cancer increases at 35 and also it is a silent killer and there was no screening I could have at the time.
Me and Mini, you can see the strap from the bag which contained my drains
Four months later we made the informed decision to have a double mastectomy and immediate reconstruction with implants. We made the decision to have implants due to MIni being under a year old and the recovery would be quicker. So I went in for my operation on 28 February. Unfortunately for me things were not straightforward and I had issues with the implants and subsequently spent a lot of time in hospital with sepsis and had to have the implants removed and another operation to remove some more tissue sue to the pathology of the previously removed breasts.
It was a hard and very emotional time for me and my family. I was in hospital for over six weeks over a two month period. But I reduced my risk of breast cancer to less than 5%. I still have not had a reconstruction, but when the boys are more self sufficient I will.
When my boys are eighteen, they will both be eligible for a genetic rest to see if they carry the same faulty gene that I do. When I was eighteen we didn’t even know what DNA was let alone be able to isolate and locate faulty genes, so it is my hope that by the time they are older not only will they be able to be tested, but if they test positive that they will be able to be cured.
Such an inspiring and positive post about what must have been an incredibly difficult time for you and your family. I am in awe of the fact that we are at a time in the journey of humankind where we have such influence over protecting ourselves and preventing some events which will bring pain and suffering. Of course there is a still a way to go but wow – definitely in awe. Thx for sharing this 🙂
Wow that is such a brave decision and I can’t even imagine how hard it must have been. I hope the reconstruction, when you eventually choose to do it, is a lot more straight forward for you. This post will give a lot of women in similar position the courage to get tested I think. xx
I didn’t know about this Jen and now I do I respect you all the more. I’m gobsmacked from reading this and hearing about Angelina yesterday. Purely as a criticism on myself that I’ve never really given this any thought at all. Much love x
Oh Jen, you are so brave and an inspiration to us all. x
Thank you so much for posting this! We have a long history of cancer on our maternal side of the family and myself, my sister and my mum have all been advised to have the test. I’ve carried it at the back of my mind about how I would feel and what we would do if it turns out I carry the faulty gene but have never actually taken the step and gone for the test. Silly ignorance I suppose! When I heard about Angelina yesterday I was a bit cynical and thought ‘well, it’s easy for her she’s famous’ so to hear that someone, for want of a better word, normal has made such a decision puts a different perspective on things.
A really interesting read and I’m full of admiration for the bravery you have shown and the decisions you have made. I feel like saying ‘well done’ but that doesn’t seem appropriate.
Jen, you are a very strong woman. Thanks for sharing. xx
This is such a brave decision for you to have made, I think you are amazing. I’ve seen lots of reactions online from people saying how unsure they would be about making the decision to have a double mastectomy, but as a BRCA2 gene carrier said on the radio yesterday, would you get on a plane that had over an 80% chance of crashing? That said it all for me really. xxxx
To choose to undergo any surgery is brave, to have to handle the testing and the results of that and then have the surgery is amazingly brave, especially with your little ones being so young. The stats speak for themself but don’t show the feelings behind them. Wonderful post.
I think everyone else has already said everything…x
You rock, lady. xxx
Thanks so much for sharing this. I have been considering it for years but have always been told to wait until I have children as surely I would like to breastfeed. As luck would have it, I had a baby, indeed I wanted to breastfeed, nature had other ideas… when I explained that to the midwife we tried even harder to get my body to produce milk, it never happened.
My mother has had breast cancer, I have the fear that she, like you, had trouble with one of the implants and it had to be taken out. It has causes so much grief. Just like one of my face implants (reconstructive surgery after an accident) had to be taken out after a month after not being able to get rid of the infection it cause, imagine how much fun that particular drain was! They were never able to put another implant in, that side of the face was just too damaged.
With that experience, with the fact that I have no idea who would look after T during that time… I can only say you are one brave woman!
Thank you again
Such a brave post. I think you made a brave and important choice. Wishing you all the best x
What an interesting post and a very brave choice to make. I must admit like many others I didn’t know much about it and somewhat naively didn’t take in most of Angelina’s story but you have made me understand what it must be like to carry that gene, thank you so much for sharing x
You are a fabulous woman Jen xxx
Jen, You are so amazing and inspiring, you have taken such a sensible and matured decision. We are lucky to live in this country in the 21st century to have the choice to get a gene test and have preventive surgery to avoid breast cancer. I can’t even imagine all the stress you went through, during the process, but it is all worth it especially for the sake of your little boys.
Hope all goes well with you with any future procedures you might have to have and wish you a very healthy and long happy life.
Thanks Ipshita x
I knew about your story but reading it I am amazed at your bravery.
You are so brave and such an inspiration. Love ya hugs x
what a very brave decision. what a difficult time it must have been. what a lady.
Jen you are so brave to share your story, you are a massive inspiration to others.
This is the first time I’ve read about boys being tested – is that advisable? How does the gene affect the boys? I’d be very interested in reading a post about that. And good for you – you and Angelina are brave and sensible ladies.
What an amazing post.
I watched a lady on Newsnight last night who’d been in these exact same circumstances and made the exact same choice.
I admire you greatly for your bravery x
My lovely, we are definitely connected, as I had a sad day yesterday too. It all strated as I was listening tot he news about AJ, and I remembered you straight away. I am so glad I know you, you are so strong and suhc a great person. You know I am going through a very dificult time with my dad, and this only made me realize even more that it can happen to ANYOne. So glad, you are OK. Hope to catch up soon, it has been ages xxx
What a brave and courageous thing to do, it must have been so hard and emotional. But what a dramatic difference in the percentages, I had no idea it would make as much of difference as that. Thanks for sharing your story also, I hope it will give other’s in the same situation some strength in their decision too, all the best. x
Sensitively and perfectly written – inspirational for other women who may have the difficult decisions you have so admirably faced.
Angeline did a lot yesterday but she has access to the cream of everything – her experience while positive for women facing this decision is still a world away. Jen you have written an inspiring and positive post which I hope reaches many ordinary women facing this issue.
I remember you making this decision, and think about you alot (obviously you were the first person to come to my mind this week!) It always seems to me that you made a positive decision – and that you are following it through daily in your positive approach to parenting. 🙂
What an awful situation to find yourself in Jenny. Thanks for sharing it so eloquently.
Really really interesting to read your story xx
Jen, just when I think I cannot love you any more than I do already… I knew about your surgery and your reasons, but reading it all in black and white is so sobering. What I admire most is how you embrace the life you have with your hubbie and the boys. Big virtual hug, until I can give you one for real. (It’s been too long). Cx
Such a brave decision that you made, and I hope that because of it you have a long and happy life with your man and your boys x
You certainly did the right thing by writing about this, and like Angelina, this will undoubtedly be an inspiration for others. Good luck!
You are so brave. Cancer terrifies me, and the type of Cancer that I lost my Mum to, carries the faulty gene, so I have decided to be tested. I too will have surgery if it comes back positive. Fantastic post, You (and Angelina) have given me that little push to get the test, Thankyou x
You’re an inspiration, Jen. What a decision to have to make, but you did it with such grace. x
Around five per cent of breast and ovarian cancers are due to an inherited faulty gene. A blood test can confirm the presence of the gene.