My name is Andrew and this is my story.
This may be one of the first personal stories from a man, which is not surprising because Pink Hope is concerned with breast cancer which is rare in men, although I did have an uncle who contracted it.
As far as I know, I don’t have breast cancer, but I do have pancreas cancer. It was diagnosed in July 2018. At the time of writing – early February 2019 – the scans show that my chemotherapy appears to be working well and I’m lucky enough to have relatively few side effects. I’m well aware that the cancer, almost inevitably, will develop resistance. To prepare for this, my oncologist, as well as I and my wife, are researching a range of different treatments.
Fortunately, medical science seems to be very active in this area. The strategy will be to progress from treatment to treatment until long-term therapies are developed. We don’t know whether this will be successful, but that’s the aim.
I’ve known since 2006 that I’m a carrier of the BRCA2 gene. I was aware that this meant that I had an increased risk of cancer, including prostate cancer, bowel cancer and indeed breast cancer.
Soon after my pancreas cancer was diagnosed, I was quite surprised to find out that I’d also been at increased risk from this form of cancer. The link was only discovered quite recently and it does not yet seem to be widely known, even by doctors. A major reason I’m sharing my personal story is to increase awareness of the risk of pancreas cancer in BRCA carriers.
Before we go further let me say that the last thing I wish is to cause unnecessary alarm. Indeed, the good news is that pancreas cancer is quite rare, even in BRCA carriers. As well, it’s a disease mostly of older people. In addition, although up to now it’s been difficult to diagnose early and not easy to treat, that situation seems to be changing. As I’ve mentioned, there’s a range of research taking place on pancreas cancer and there’s increased attention on ways of detecting it early. Like many cancers, the earlier it’s diagnosed the better.
Knowing that I carried the BRCA2 gene, I had been very careful over the years to monitor my health for any symptoms of cancer, such as prostate, bowel and skin cancers. I also took care to advise my doctors of the family history and point out the risks.
Until last year, I’d been fortunate enough to enjoy generally very good health. A regular routine check-up by my very competent GP in April 2018, including blood tests, had shown everything to be normal.
I was overseas on holiday in late May when I woke up from an afternoon nap with a stiff neck. This went away after a few days but I then developed a mild pain below my right shoulder blade which persisted. Back home I consulted my GP who suggested that it was just a strained back, but a few days later I discovered a small lump on my stomach. My doctor thought that it was a lipoma, a benign fatty lump and ordered an ultrasound. This revealed that it might instead be a cyst and one Thursday morning I had a needle biopsy of the lump.
Early the following Monday I received the voice message that one does not want: “Andrew, your test has just come in and we need to take a closer look…” My GP moved quickly. By the end of the day, blood tests and a CT scan had revealed that as well as cancer cells in the lump, I had lesions on the pancreas and the liver. On the Friday, my wife and I saw a surgeon who advised that surgery was not an option, but referred us to an oncologist, who we saw the following Thursday. It seemed a long time to wait but then matters proceeded quickly. My oncologist proved to be an expert in the area and I began outpatient chemotherapy on the following Wednesday, a little over two weeks from the diagnosis.
I have two sessions of chemo over a three-week cycle. The drugs are gemcitabine and carboplatin. The major side effect is sudden fatigue. Once or twice a day, I suddenly feel tired and go and lie down. I usually fall asleep almost immediately for about half an hour and wake up feeling very refreshed. Plenty of exercise is recommended for cancer and I try to jog and swim every day, or at least have a good walk. The chemo has reduced my red blood cells which means that I have less oxygen available. That’s OK, because I just jog more slowly. I also pay great attention to a healthy diet. We’ve been most impressed by the NSW Public Health system. The nurses and doctors are highly professional and caring and there are a number of support services, all free or nearly so. While my current chemo is working, my oncologist will be continuing this treatment. When there’s a change, we’ll move to new options. BRCA related cancer, including pancreas cancer, has the benefit of being more responsive to certain drugs than non-BRCA cancer.
Like many people, I’ve wondered if the cancer could have been detected earlier, before it had metastasised. Because of my general good health, it’s not very likely although looking back, I realise that I did have one or two mild symptoms, such as minor changes in my digestive habits.
If I had known of the risk to BRCA carriers I think that I would have been more observant and also pointed out the link to my doctors.
I took the test for the BRCA gene because many of my family had had a history of cancer and had been confirmed as carriers. The great benefit was that a number of the female carriers did develop breast cancer but had carefully monitored their health and so were able to detect the cancer at an early stage. So far, all of them have survived.
What are the messages from my story? If you carry the faulty BRCA gene, don’t panic about pancreas cancer. It’s still relatively rare, even in carriers.
But, be aware of your risk and talk to your doctors about it.
Before long, it’s quite likely that routine tests will be available which will detect pancreas cancer at a very early stage. Treatment is also likely to improve very significantly. I am so proud to support Pink Hope, who raise awareness of the BRCA gene mutation and if you are a carrier I strongly encourage you to ask your relatives to consider being tested and know their risk.