Like Emmerdale’s Chas Dingle, I received devastating news about a cancer gene

Watching Emmerdale’s Chas Dingle (Lucy Pargeter) find out she has BRCA2 gene and navigate cancer has been emotional for all of the show’s viewers.

Sadly, I can relate all too well.

I found out that I was BRCA2 positive by chance.

I took a DNA test, mainly for fun. When the results came back it didn’t seem like a big deal, everyone has a risk of cancer, but the email informing me did tell me to inform my GP. It was then that I realised it was quite a bit more serious.

My risk was so high (up to 87% chance of getting ovarian or breast cancer), that after speaking to the genetics team that I decided to undergo preventative surgery, including a partial hysterectomy, which put me into menopause.

I also had a double mastectomy, just as Chas is planning to do, that I followed with immediate reconstruction. I’ve also now had some fat grafting to cover some of the rippling that was visible after the operations.

As soon as I knew I would be going down the preventative surgery route I realised I would need to tell my son, who was 17 at the time of my first operation, why, and what was happening, and to let him know he was a potential carrier.

This is the same issue Emmerdale viewers will have seen played out in Chas’ story, as she had to tell her family, including son Aaron (Danny Miller).

With my son, now eighteen, I was very matter of fact. I didn’t want it to be a big deal but I wanted him to know what to expect from my surgery, and why, and that while he too might be a carrier of BRCA2, because he was male, he wouldn’t need surgery.

The recommended pathway is different for males and females. Preventative surgery is not an option for males but they can still have testing and scans.

My son asked questions and kept a cool head, and was a wonderful support. He even picked me up after one of the surgeries and had a strange time trying to get sense out of me while I was still on heavy medication.

It ended up being a funny story and it’s been helpful for both of us to focus on humour when we talk about it.

While Emmerdale’s Aaron has now agreed to be tested, he was initially reluctant – and I understand this too. My son has said he will get tested but at first he really wasn’t sure. Once you know, there is no going back.

Even knowing that you ‘could’ test positive makes things harder because decisions about your future family, or your own medical future, have to be made in light of that possibility.

If I had known about it before I had children, I think it would have been a much bigger decision to mentally and emotionally manage.

It may even stop you from feeling like you can have a family, or hold people back from having relationships because of the fear that a partner might want a family one day and you have to disclose that you might pass on the gene and put your children at high risk of cancer.

There is also the fact that anyone you are with will also go through a lot whenever you are waiting for test results, or as you go through surgery. My husband seemed OK but when I had a biopsy for a suspicious lump, I rang him to say the results were all clear and he burst into tears.

Your life becomes about weighing up hard decisions and hoping for the best and that can take its toll on you and those around you.

I’ve looked at my children and thought about what the future might hold for them as potential BRAC2 carriers. After I was diagnosed I told my daughter that I was going to have some operations but she was only four then and recently turned five, so she doesn’t yet know why.

It does concern me but I’m also pragmatic and hopeful that there will be more options available as science progresses.

It doesn’t need to be a scary diagnosis – in many ways, it’s an advantage to know your risk of cancer and to be able to do what you can to mitigate it.

That’s why it was so important to me to approach the surgery in an empowered way. If my children do have the gene, I want them to have a positive role model for that journey. It’s important that mainstream shows like Emmerdale tackle, and normalise, this topic, too.

There are so many things we worry about in life, I don’t want this to be something my children become anxious about or feel powerless around.

I would recommend to anyone in the same position I was that they have some genetic counselling before making any decisions. I am under a genetic counselling service that offers lifetime support for the families of variant BRCA gene carriers, and as recommendations change and risks are reassessed, they are there to inform and support choices around testing and surgery.

And remember that even if you have a BRCA gene mutation, it doesn’t mean you will get cancer, nor will you definitely pass it onto your children.

Preventative surgery can have a long wait time and I was offered regular scans and tests, so bear in mind that things may happen slowly.

Apart from the unknown of my children’s risk, the future now looks much the same as it did before I found out.

I still have to be aware of the melanoma risks and look out for pancreatic cancer symptoms which I am at higher risk for with the BRCA mutation but currently there is nothing I can do about those but wait and see.

The biggest change has come from early, surgically induced menopause, which was the hardest part of everything my body went through in terms of the emotional adjustment.

My breasts, or ‘foobs’ as I call them have no sensation in them, which is strange; I miss having feeling in them and although the surgeons did a wonderful job of reconstruction, the fact that I only have a very smaller layer of tissue under the skin left means that they will never feel like real breasts again.

I don’t miss the testing and waiting for results, however, or the concern every time a lump is found, or a mammogram picks something up, or the hospital visits!

I feel empowered by the whole experience, I hope that anyone watching and relating to Chas Dingle will too.