I have had my own challenges while the World’s focus has been on the Coronavirus. This is a personal account of how the BRCA2 gene mutation has affected my life.
While the World Has Been Focused on the Coronavirus, I’ve Been Beating Cancer
The World around us changed dramatically between my birthday and my best friend’s birthday three days later. We spent the weekend together with our husbands, the four of us celebrating by staying in a resort and drinking, eating and laughing together. After we went home the restrictions started suddenly so that it would no longer be possible to socialise in that way. Our last weekend together from 20-22 March is the last time we could eat out at a restaurant or cafe, drink in a hotel or even spend time together. It seems like the distant past now.
We still can’t eat out at restaurants together, although restrictions in our State have begun to be lifted. We are unable to cross the border to visit my family who live just an hour south. Social isolation has added another layer to my own health battles that began to unfold this year.
BRCA2 Gene Mutation and Cancer Risk
I was diagnosed with the BRCA2 gene mutation in March. You may have heard about Angelina Jolie having BRCA1 and undergoing bilateral prophylactic mastectomies and a total abdominal hysterectomy a number of years ago. BRCA2 is similar – it increases my risk for breast and ovarian cancer dramatically. It’s a case of not if I develop these cancers, but when.
I knew there was a chance of inheriting this gene about 10 years ago when I nursed my cousin who told me she has the gene. I had genetic counseling back then but it was not very obvious that the gene was on my side of the family as there wasn’t a high number of family members with cancer, especially breast and ovarian cancer. The genetic counselor thought my cousin probably inherited it from her father (no blood relation to me). Consequently, I didn’t get tested and opted for more stringent screening instead.
I’m a huge advocate for screening. I have been having early mammograms and ultrasounds for the last 10 years. Every six months I get my skin checked. My son’s melanoma was picked up during a routine skin test. This was possible because I starting taking my sons for skin checks from a very young age. My son’s melanoma was diagnosed when it was just a stage 1 cancer. Many people ignore things until they’re advanced but that’s not me. I get every little bump checked out because I’ve seen too many invasive cancers as a nurse.
The last few years have produced more cases of cancer in our family – my son, brother and sister have all had melanoma and my father had prostate and pancreatic cancer. It was always in the back of my mind that I should probably get tested for BRCA2. I went back to the genetic counselor to be tested. Results showed I did have the BRCA2 gene mutation. I inherited it from dad – I had a 50% chance of having it and my sons then had a 50% chance of inheriting it from me. My first reaction was not for myself, but rather for my sons – “I’ve given them a death sentence”.
BRCA2 Affects Males Too
Telling them was difficult. It would have implications for when they want to start a family, and it might even be a deal-breaker for some women who wouldn’t want to have the risk of having children with a genetic disorder. They surprised me with their reaction, however. Their response was that they’d rather know if they had the gene or not. They were now aware of screening and get any changes in their bodies checked out early. They underwent genetic counseling and were tested for the BRCA2 gene mutation. The results came back negative. We were surprised and ecstatic at the results. Even my son who had a melanoma was clear which is even more surprising).
Risk Reducing Surgery
My first response to finding out I have BRCA2 was to swiftly decide to have prophylactic risk-reducing surgeries. That involves removing the organs most at risk of developing cancer – ovaries (I have a 20-40% chance of getting ovarian cancer) and breasts (60-80% chance). Having nursed women with ovarian and breast cancer for most of my nursing career, I know how devastating those cancers are and I want to avoid them as much as possible.
I had the first surgery on March 30th – a laparoscopic bilateral oophrectomy (keyhole surgery to remove my ovaries). This surgery is low-risk and most people bounce back quickly, with very little complications. Then there’s me. I seem to have the worst luck when it comes to complications to procedures – I went into complete heart block after an angiogram and required CPR. One medication landed me in hospital from a severe allergy. So to have complications after this small operation, while not surprising for me, was a shock to the system all the same.
I bruised. My abdomen became extremely distended. A lot of pain and nausea. But the worst thing – I couldn’t pass urine. I ended up going home with an indwelling catheter and it unearthed a problem with my bladder that’s probably been there for a long time but wasn’t apparent until I had pelvic surgery. I had follow-up surgery to fix it last week. While there was an improvement, there will be ongoing issues for a long time because my kidney and bladder have been damaged. All my back pain was from my kidney, not my spine after all.
My next challenge is Bilateral Prophylactic Mastectomies
This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. After my previous operations I’m scared of having this surgery. I’m more scared of breast cancer though. Someone said to me that I’m brave to do this – I don’t feel brave. In fact I feel just the opposite. The women who have breast cancer are brave. Imagine going through this operation as well as radiotherapy, chemotherapy and medications for life. That’s brave to me.
I feel like I’m cheating cancer by doing these surgeries, but there’s still the risk of getting a different type of cancer because of this gene mutation. BRCA2 causes pancreatic, prostate and renal cancer as well as melanoma so I’ll still have to remain vigilant. Of course I can’t get prostate cancer, but pancreatic cancer is hard to detect. My dad’s was too far advanced to have any treatment. Pancreatic cancer ravaged his body. He only lasted for 7 months after it was diagnosed. Poor bugger, it was a horrible way to die.
How the Coronavirus Has Impacted Me
Attention has been on my own health issues while the world has been focused on coronavirus. I have found it hard to cope at times because it has restricted my ability to interact with the people who are my confidantes and support system. Talking on the phone is not the same. Even when I was in hospital I could only nominate one visitor for the whole hospital stay. My husband was sent away from the hospital and could only visit for 2 hours once a day. Going through mastectomies will be daunting without him there for my support. The thought of it upsets me a great deal. I won’t be able to have my sons and best friend visit at all.
Elective surgeries were cancelled in March. I feel really lucky that I knew the surgeons personally and my first operation was pulled forward. Any later it would have been impossible. I feel a little guilty that I could get this preferential treatment but there has to be some perks for nursing alongside these doctors for the last 20-30 years.
Having to tell my brothers and nephews over the phone and Messenger that they too have a 50% chance of inheriting this really sucks. Social distancing sucks when you have to have these very full-on conversations. Worrying that I may get the coronavirus affects my health too, because I have co-morbidities that would mean I’d be one of the cases most likely to end up really sick from it. It’s been a very stressful time, and I’ll be glad when this is all over and we’re out the other side. The world will be a changed place when this pandemic is over.
Note to my followers: I’ll be out of action for a while due to my surgery this week. I may be able to post short updates via my mobile phone but my usual blog posts will be on hold for a few weeks. Thank you all for your support, I really appreciate it.
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