If only I’d known then, what I know now…..
I am a 68 year old father of two children, Jenny and Stephen, who 3 years ago, found out that the family on my father’s side had many members who had inherited the BRAC1 Gene.
Before posting this blog, I sent a copy to my daughter for approval. This was her reply:
Hi dad, it’s a fabulous blog you have written. There’s loads of detail! It brought tears to my eyes. I think it will be a huge help to a lot of people and it’s really kind of you to take the time to write it. I know there’s a few people hoping a man could write something like this and they will enjoy reading it from a male carrier’s perspective. Feel free to ok it for publication. Once again, thank you for doing it. Sending lots of love ??? xxxx
This is the story of my experience:
October, 2012
Before we had gone out to Tenerife the previous October, I had made an appointment with the Genetics Department at St Mary’s Hospital in Manchester to have my DNA analyses. A problem had been found in the health of the Kershaw side of the family and a few months earlier. My sister, who was tested 10 years ago, had been sent a form to be given to each of her siblings, suggesting they were tested for the BRCA1 gene.
Whilst this faulty gene had little effect on males, females had a far greater risk of breast and ovarian cancer. We didn’t know if dad had this gene, but the fact that my sister had tested negative gave me a sense of security and hopefully, I didn’t have it, so it couldn’t have been passed on to my children.
I attended the hospital just before Christmas and Tara Clancy; the genetics counselor explained the procedure (just a blood test) and possible outcomes. I was surprised at the amount of information she held on the family, she had a genealogy tree which had been built in 2000 and it was very detailed. She also told me an aunt had died of breast and ovarian cancer and that my cousins two girls had had breast cancer. Of my uncles two girls, one had the gene and had her ovaries removed.
Tara asked me if my children, Jenny and Stephen, were aware of the family gene and suggested I put them in the picture to ease the introduction of possible bad news. I told her about Jenny’s impending birth (she was seven months pregnant) and that I didn’t want to unduly worry the kids as hopefully, I wouldn’t have the gene so they needn’t worry.
January, 2013
Michael, my first grandchild, was born on the 2nd of January.
I returned to St Mary’s on the 8th of January, accompanied by Ann, my wife. As Tara led us down the corridor to her office, I got an uneasy feeling; Tara wasn’t as lighthearted as my last visit.
“Its bad news I am afraid, you have got the gene” My heart slumped, I wasn’t expecting this. Ann squeezed my hand and tears welled up in her eyes. My daughter, Jenny, was just starting to enjoy her first child. Tara added Michael to the family tree and explained the children’s options, concentrating on Jenny. God willing, she hasn’t got the gene, but if so, she could have twice yearly breast checkups, a normal mammogram then CT scan 6 months later, these tests had a very high chance of catching breast cancer. Ovarian cancer was a different problem, it was usually undetected till too late, so it was recommended to have the ovaries out when you had completed the family.
The enormity of what I had been told didn’t sink in for several hours, but then I read that the enhanced chance of breast cancer for someone with the gene would be 50 to 85%, compared to 10% for women without the gene. God, what had I possibly given to Jenny- a possible disfigurement or a death sentence; I felt physically sick and sank into depression. Talking to Ann helped and her understanding relieved some of my depression. My ex-wife, Jenny’s mother, needed to know.Two days later, I met her in a garden centre.
She was quite understanding and didn’t blame me for the medical problem “You get dealt a hand of cards and you’ve just got to live with what you have got. We agreed Jenny shouldn’t be told for several months, her hormones would be all over the place and it would be terrible to burst her ecstatic bubble she was now in with Michael. My ex agreed I could phone her with any news I got as to how the Kershaw’s were managing known gene issues.
March, 2013
I spoke to my ex again and agreed she would arrange for us to meet with Stephen (our son) & Jenny towards the end of the month to discuss the BRCA1 gene situation. I had got my report as follows:
GENETIC MEDICINE
6th Floor
St Mary’s Hospital
Oxford Road
Manchester
M13 9WL
Direct Line: 0161 276 6322 Fax: 0161 276 6145 Website: www.mangen.co.uk
Our ref: TC/SS/G23108/101 MedisecNET ref: 5819892 Clinic Date: 08 January 13
Dictated: 10 January 13
Typed: 18 January 13
Dear Mr Kershaw
I am writing to confirm the results of your predictive test for the familial BRCA1 gene fault which we discussed when I saw you and your wife in clinic on 8th January. I realise it was very disappointing to hear that you do carry this.
As you know from our previous discussions, there is no evidence of a particularly increased cancer risk for men who carry BRCA1 gene faults. The main concern therefore at this stage is for your daughter who is now in her early 30s. BRCA1 is a dominantly inherited gene. As you will see from the enclosed leaflet, this means that each of your children has a 1 in 2, or 50%, chance of having inherited the BRCA1 gene fault.
Women who carry a BRCA1 gene fault have up to an 80% chance of developing breast cancer, and up to a 60% chance of developing ovarian cancer in their lifetime. The high risk period for breast cancer is between the ages of 35 and 50, and the risk of ovarian cancer increases from around 40 years. So, at the moment, your daughter has up to a 40% chance of developing breast cancer, and up to a 30% chance of developing ovarian cancer. She is eligible for annual breast screening by mammography and by MRI scan from her current age. Unfortunately, currently there is no proven effective screening for ovarian cancer. Your daughter could also consider having a genetic test at some stage (as could your son). When she wants to access screening and/or a genetic test, she just needs to ask her GP to refer her here, citing your reference which is G23108.
I was very pleased to hear that your daughter’s first baby (and your first grandchild) Michael was born earlier this month. Given that you will be back in the UK in March I suggested you leave discussing your result with your daughter until then. It would probably be better for her to have a couple of months to get used to being a mum before having to think about BRCA1 and what it may mean for her. I can appreciate why you are likely to let your ex-wife know in the meantime, and I hope your conversations with her about this aren’t too difficult for either of you.
With best wishes.
Yours sincerely
TARA CLANCY
Consultant Genetic Counsellor
Ps I can confirm that we have already sent some details about the family history to the Genetics Service in Canada which your brother has been referred to, I will now fax them a copy of the report of your genetic test.
It was arranged, my ex had phoned and we would meet with Jenny and Stephen on the 28th of March.
As the date got nearer, I could feel my tension levels increasing. I was about to tell one of the most important people in my life that I might have inflicted a potentially lethal gene upon her and possibly to Michael. I knew the news would deeply affect her, she was a born worrier and why should I now have to burst the bubble of happiness that had been on her since Michael’s birth. Both Ann and I had been praying for weeks that she wouldn’t have the gene and Ann was very generous with her love and hugs as the day arrived.
I copied the paperwork and went over and over again in my head what I would say. I didn’t want to be alarmist, but I could hardly trivialise it. Bernard. My elder brother had been confirmed as having the gene, Phil, my younger brother, was still to be tested, Jeanette was clear of it and I currently had a cancerous growth on my leg caused by sunlight.
Jenny answered the door, she looked radiant as usual, and I knew she had been trying to get information out of my ex, but she had managed to deflect her questions. Stephen and my ex where there and a cup of tea was on the armchair awaiting me. I told her of family history and the identification of the faulty gene before going into the risk values. I could see her absorbing the information and trying to analyse the possible scenarios and after I had given her it all she burst into tears “Id sooner I had it than Michael” she said as my ex comforted her. I told her that by the time Michael was considering a family, they would probably have a cure for it “But I want to see him grow up” she said as tears run down her cheek.
I tried to assure her she would see Michael grow up and as Stephen would later comment, knowing about it is empowering you. Stephen knew a colleague at work who had the faulty gene, so he understood what was involved more quickly.
They both decided they would have the test “This will be the longest six weeks of my life” Jenny said.
Mark came home, he had taken Michael to his parents, and I again went through the situation. Much to his credit, Mark was very positive in his prognosis which greatly cheered me. He too knew a colleague at work with the symptoms and as I had previously said, stated that knowing about it was the all-important factor as you could try and reduce the risk of getting a cancer and hopefully have a very early diagnosis should you not be as lucky.
I felt some degree of relief now both Jenny & Stephen knew, but this also gave me a feeling of guilt, I would sooner have the anguish that have passed some on to Jenny, God, please don’t let ether of them have the gene.
September, 2013
“Are you alright?” I asked “Not really” Jenny replied before dissolving into tears. I hugged her and told her I would have it for her if I could, before going into the garden with her.
She had returned to St Mary’s hospital in Manchester on the 30th of September for her BRAC1 results. Her appointment was for 4:30 p.m. and as the clock got round to 5:00 I feared the worst. The phone rang at 5:40 “Hi dad” a cheery voice said and my heart initially lifted, but after a couple of pleasantries “I’ve got the gene, I knew I would have so it came as no shock” “O Jenny, I am so so sorry” I said. I need to come back on the 4th of November to discuss my options, but I have already decided to have the op (Double mastectomy)
Now, a few days later, she was frightened and unsure of what lay ahead. I asked her what her main worry was. “That Michael may have the Gene, and if I had any more children, could I inflict what I am going through on a daughter” I tried reassuring her that in the next 25 years, it was almost certain they would have a cure for this terrible gene. In the following days I felt my mind spiralling down as I thought of what this most beautiful and loving daughter of mine would have to go through, I couldn’t wish for a more loving and considerate daughter, I loved her with all my heart. Ann and I had prayed for weeks and I felt doubt about my faith, did pray EVER have any effect on anything?
The only way I could initially help was by trying to find some other women who had gone through all this and had a positive outlook, after all, if there was any good in knowing about this gene, and then it was that it couldn’t come as a surprise when few options remained. Angelina Jolie had recently had the double op and bravely published it. I also found a blog of a 21 year old girl on Tyneside who had kept a diary of her experience and bravely, published before and after photos of herself, which, were remarkably good and at least gave me some encouragement.
Stephen was tested around the same time and thankfully, he didn’t have the gene.
December, 2013
As I write, it is the 31st of December, 2013 and I am full of trepidation for the New Year. I have just had a text off Jenny telling me she has a possible lump in her left breast following her first scan; she goes to have it checked out on Jan 8th. She has previously decided to have a double mastectomy, God, what that poor gorgeous loving daughter has to go through. Thankfully, she was given the all clear.
Jenny’s operation (double mastectomy) was to take place in September and as each day passed, I could feel the tension increasing within me. No father wants to feel he is responsible for inflicting such a drastic operation on a healthy daughter. What had she done to deserve this? Nothing. A friend who had the operation assured her that her surgeon was the best there was, she was very lucky to get him. Jenny was very positive and just wanted to be free from the shadow hanging over her.
She had a “By-by boobies” party with her girlfriends with lots of inappropriate games. The girls also wrote their messages of support to her before attaching them to balloons and releasing them into the night sky. She also posted the following poem on Facebook:
Here is my poem I posted on the BRCA Facebook page on Sunday x x
An Ode to my Boobies
The night before the op
I’m packing my case
My stomach is churning,
A green tinge to my face
For what lies tomorrow
I don’t know for sure
I just hope and I pray
The burden will be no more
In goes the surgical bra
The big granny pants
My baby boy’s blanket
To hug through the angst
This time in a day
By boobs will be gone,
But lessen the threat of cancer
For a lifetime to come
Bye-Bye my boobies!
The years have been great
But it’s time to part ways
Coz you’s aren’t my mate
I’m not nearly as brave
As the thousands before
Who’ve experienced cancer,
Their lives have been torn
For them, my plight
Is merely just a story
Because it’s those that have fought
Who deserve all the glory
I’m a BRCA survivor
With proud scars that will tell
How I took back control
To avoid cancer hell
Now the future feels brighter
I can feel in my tummy
That for many years on
My son will have his mummy!
September, 2014
I nervously awaited the call telling me how Jenny had gone on. Ann knew of my worries and did everything to assure me it would all be O.K. It was still a massive relief to hear Mark it had all gone well and we could visit her in Wythenshawe Hospital the following day.
We had expected to see her flat on her back, dozy with pain killers. There she was, sat up in bed with full makeup on and if it hadn’t been for the drains, you wouldn’t know she had recently gone through hours of surgery and reconstruction.
“Do you want to see my new boobs?” something half of Widnes would get asked over the next few weeks. She opened her top jacket and I could have wept, wept with joy; they were fantastic!
I thanked God many a time over the next few days and prayed for Jenny, Mark and Michael. I know Jenny is reluctant to have another baby, in case it inherits the gene. I said if I had known I had the gene before she was conceived, I would still have wanted another child. Looking back, life without Jenny being conceived would have been a great loss. I know that in 20 years’ time they will have a solution to this rogue gene which is currently killing Bernie Singleton, a most remarkable woman and friend who also lost her daughter to it.
May, 2016
How do I feel now, 18 months after Jenny had her op.?
A lot happier, happy that Jenny has had such good support from Mark, her husband. Happy the risk of breast cancer has virtually gone, happy that Jenny is happy and happy knowing she will not let her experience prevent her from perhaps having another baby.
Bernie Singleton, our dear friend died just four weeks ago, her cancer finally winning. Her daughter had died through breast cancer six years earlier. Bernie raised over £200,000 for Cancer Research
Jenny is just in the process of considering tattooing nipples on her new breasts. In fact, about 12 months ago, I sent her some photos of tattooed nipples (bit of a strange thing for a dad to send to his daughter). They were very impressive, so let’s hope she finds something she likes.
If there is one single piece of advice to anyone who finds they have the BRAC1 gene, it is this:
Knowing you have the gene has EMPOWERED YOU, you have all the winning cards in your hands to play. Be positive, others may not be fortunate enough to find out they have the gene until something nasty bites them on the bum!
Best Wishes,
Paul Kershaw
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