I do some strange things while scrolling through my phone at night. My insomnia keeps me awake for hours sometimes with only my screen for company. I wake up the next day with buyer’s remorse, usually because I’ve bought shoes or clothes that never fit me, or an appliance that never gets used. But this time I woke up with a sinking feeling in my gut because I had signed up to GO PINK, and agreed to dye my hair pink for breast cancer research.
I’m pretty conservative and have never dyed my hair any shade that could be considered flamboyant or radical. As an introvert I hate to stand out in a crowd. The thought of it makes me blush so I’ll probably end up looking like a flamingo with cheeks to match my hair. I needed some courage and that came in the form of my beautiful niece Ally who LOVES to stand out in a crowd and possesses such a lively spirit that she’ll boost my confidence when I need it the most. Ally has been a wonderful support to me over the last few months. She was the person I turned to when I knew I was having my mastectomies because she’s been through breast surgeries herself. Having someone to talk to who has been through this has been a blessing.
I’m doing this challenge because it’s to fundraise for a cause that is very special to me. I have written about my genetic disorder BRCA2 which increases my risk of breast, ovarian, pancreatic and renal cancers and melanoma. I inherited it from dad who died from prostate and pancreatic cancer (both caused by BRCA2). I’m at home recovering from bilateral prophylactic mastectomies, which is a risk reducing surgery along with the removal of my ovaries which I had done in March.
The very fact that I could have risk reducing surgeries is entirely due to the discovery of BRCA2 in the mid 1990’s. Before that, entire families were devastated by breast and ovarian cancer striking again and again through multiple generations. It’s now commonplace for family members to be tested for genetic conditions when there appears to be a genetic link there. Discovering this gene mutation in 1995 was a game-changer for breast cancer research. It allowed people like me to discover their inherited risk for cancer and do something about it. Increased screening, prophylactic surgery and medications to reduce the risk are all possible now thanks to breast cancer research.
In my case there were few cases of breast cancer in my family so that alone prevented me from being tested ten years ago. It’s not as well known that men can have the genetic mutation too. Prostate cancer and melanoma have cropped up in our family through multiple generations, including my 24 year old son who had a melanoma. My cousin was diagnosed with BRCA2 about 10 years ago, and because of that I could be tested for free. The cost used to be extremely high but improved testing methods mean that more people can now be tested for it under Medicare. My sons and any other close relatives are also eligible for free testing.
I am passionate about research into genetic causes for cancer and other diseases. That is why I signed up to the GO PINK campaign because it raises funds for breast cancer research by the National Breast Cancer Foundation. If dying my hair pink raises awareness and funds, then I’ll do it even though I’m feeling anxious about looking weird with pink hair! The big day is this Friday and if you would like to donate to this cause via our team The Tough Titties (Ally’s idea, because people who have cancer have to be tough) the link is below.
While the World Has been focused on the Coronavirus I’ve been beating cancer
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.
Restrictions in our State have begun to be lifted but we still can’t eat out together or 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). So I didn’t get tested and opted for more stringent screening instead.
I’m a huge advocate for screening – I’ve been having early mammograms and ultrasounds for the last 10 years and I get my skin checked six monthly. Because I starting taking my sons for skin checks from a very young age, my son’s melanoma was picked up when it was just a stage 1 cancer. A lot of people ignore things til they’re so 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 so I went back to the genetic counselor, was tested and found to have it. 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. They said they’d rather know if they had the gene so that they could more more aware of screening and getting any changes in their bodies checked out early. They underwent genetic counseling and were tested and we were surprised and ecstatic to find they don’t have the genetic mutation after all (even my son who had a melanoma 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 got 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 and while there was an improvement, I’ll continue to have 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.
This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. I’m scared of having this operation after what I’ve been through, but I’m more scared of breast cancer. 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 and my dad’s was too far advanced to have any treatment. It ravaged his body and 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
So while the world’s attention has been focused on coronavirus, my attention has been on my own health issues. I’ve found it hard to cope at times because it’s 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 but I guess I’m really lucky that I knew the surgeons personally and my first operation was pulled forward to beat the deadline before 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. One things for sure, the world will be a changed place when this pandemic is done.
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.
A doctor I worked with once said to me “if everyone gave up smoking I’d be out of a job”. That’s not strictly true, however, because even though the smoking rate has gone down since awareness campaigns and Government restrictions on the sale of cigarettes, there are still other risk factors that can predispose us to disease like hereditary factors, lifestyle, age and sex, environmental factors and socioeconomic status. We can’t do much about our hereditary factors, age or sex, but we can control our lifestyle, environment and socioeconomic status to a certain degree.
Another thing we can control is our awareness of signs and symptoms that could warrant a trip to the doctor, such as:
changes in bowel or bladder habits
shortness of breath, wheeziness
a cough that produces yellow or green sputum, or is blood tinged
chest tightness or pain
spots that have changed on your skin
lumps and bumps
bleeding, e.g in your urine or faeces, or a wound
hoarse voice or difficulty swallowing
dizziness or fainting
pain not controlled with over the counter medications
weakness in a limb, especially when it’s down one side of your body and you also have a drooping mouth
very high fevers, 38 degrees C or above
discharge or oozing, especially when it has a strong odour
a cut or sore that won’t heal
severe thirst but still have a dry mouth
unexpected weight loss and loss of appetite over a period of time
snoring and breath holding at night, and still feeling exhausted during the day
changes in your vision, crustiness in your eyes, or red and painful eyes
yellowing of skin and eyes
palpitations or fluttering in your chest
fractures or sprains
confusion or mood changes
reactions to medications or treatment
Knocks to the head, especially ones where you lose conciousness or see stars, or are confused afterwards
This list is only a sample of things to watch out for. Some of these are medical emergencies – don’t hesitate to call an ambulance if you have chest pain, weakness down one side of the body, severe bleeding and serious accidents. If you have a pre-existing medical condition, make sure you are informed of what signs and symptoms to look for, and when to see your doctor for follow-up appointments.
I’ve been a Registered Nurse for over 30 years and unfortunately many of the patients I see have a “head in the sand” approach to health. They are aware of signs and symptoms, but they’re too scared to go to the doctor so they leave it too late. Many of the diseases we see can be cured if they’re diagnosed and treated early enough, but because the person is too scared to see a doctor, it is too late to do anything about it. Unfortunately we also see patients who have been fobbed off or treated for the wrong thing as well. If you’re not happy with what you’re told by one doctor, seek another opinion.
You are the best advocate for your own health so keep in tune with your body and don’t ignore signs that there’s something wrong.
I have worked in Plastics and Reconstructive surgery wards for many years and even then I have a personal example of mis-diagnosis with skin cancer. Because I am aware of the risks of skin cancer I have had a yearly skin check for at least the last 20 years. My sons have had the same checks since they were small children. This is partly due to the high incidence of melanoma in my family (my brother and sister) but also because of seeing the effects of melanoma spread in patients.
I was on holiday in New Zealand and my son phoned me to say he’d had his skin check and the doctor had biopsied a spot on the back of his hand and it had come back as melanoma. It’s hard to convey how devastated I was at hearing this and not being at home to support him. He was only 24 at the time and we’d been going to the same skin doctor for years. This doctor had told him at least twice before that the spot was fine, and we had trusted him. This time it was a different doctor – we had recently moved to a new surgery.
If my son had left it for another year it would have spread. We were lucky it was Grade 1 and hadn’t spread at all. I phoned one of the Plastic Surgeons I worked with and made an urgent appointment and my son was in surgery the following week. He had to have a full thickness flap done, about 3cm in diameter, to his hand but he’s cancer free which is the best outcome we could have had. He’s proud to show his scar because he’s a survivor and he’s brought awareness to many of his friends and acquaintances about the need for skin checks. We both have to have 6 monthly skin checks now for the rest of our lives.
My message today is that I want you to see a doctor if you’re concerned about anything, but keep pushing for more if you’re not happy with what they tell you. That niggling feeling that something isn’t right should not be ignored so pay attention to your body!
Note: this article is for informational and educational purposes only and should not be substituted for professional advice from a Registered Medical Practitioner. Please see the full disclaimer statement by clicking on the heading Disclaimer on the Home page. I am unable to answer specific questions from readers – if you are concerned, please see your doctor.