1. What impact has NETs had on your life?
Massive, huge, gigantic impact.
I was first diagnosed in 2004. I had been seeing an Osteopath because I had a sore back after switching from a water bed to a normal mattress. She had fixed my back issues but on feeling around my stomach she said things didn’t feel right and suggested I get a CAT scan done. I nearly didn’t bother but for some reason I did. When my GP rang me a few hours after my scan and told me to come in immediately my life changed forever.
They originally thought I had Non-Hodgkin’s disease and I went off to surgery to have a biopsy. That was the first time I nearly died on the table. I had an Extra Adrenal Pheochromocytoma, a mass approximately 150mm round growing off my aorta within my abdominal area. Luckily the surgeon was skilled enough to realise things weren’t right and got out quickly. Three weeks later after being adequately Alfa blocked, Dr. Peter Campbell safely removed the mass.
I have now had six Pheo’s removed—three from my abdominal area and one growing into my Inferior Vena Cava (IVC). The affected section of vein was cut out and replaced with a synthetic vein, but complications from my sensitivity to the blood-thinning drug warfarin meant I bled internally (the second time I nearly died). Emergency surgery and reversing the blood thinning saved me, but my IVC is now permanently blocked. More recently, I have had two Pheo’s removed from my spine (T10) and one from the right parotid gland. There are still six growths—one on my skull, two in ribs, coccyx, hip, and one in spine C6.
I have had radiation twice which didn’t help in my case. In 2011, four cycles of Lutate and chemo combined helped stop progression until 2014, when one in the parotid popped up quickly and was removed. I had two further cycles of Lutate which didn’t seem to help this time. I have since had one in the spine (T10) removed in 2015, grow back, and removed again in March 2017. I am currently trying six months of straight chemo. The last MRI showed no more progression; getting a GA Dotate scan in two weeks, hoping it shows the same.
Still, in between the bad stuff, it makes you appreciate life and really put things into perspective. Before the first Pheo I was working a lot and used to worry about money and material things that aren’t important. We have since left Sydney and the high-pressure job, travelled around Australia for 9 months, home-schooled the kids, and now settled on the mid-north coast of NSW near the beach.
2. What has been most helpful to you in your NET experience?
Resilience both mentally and physically.
Keeping positive
When I am feeling a bit down I think of the words of my vascular surgeon. After complaining to him that my right leg is now permanently swollen, he said “toughen up buttercup, you should be dead.” Not great bedside manner, but I often think that to myself and just get on with it.
Support from my family and friends
The single most important thing is support. I am very lucky in this area and have great support. I am not sure I would have been able to get through all the operations and treatments without mostly my wife but also friends and family. My employer has also been very understanding and flexible; when I am well, I try to pay it back the best I can.
I try not to think about it too much
It’s always in the back of your mind, but I try not to dwell on the disease. Unless someone directly asks me about it, I tend not to talk about it. There are various support groups available—you need to pick the one that suits you, but limit the number of groups and time reading stories. They can get you down, especially the bigger overseas groups. A lot of the content is not relevant to us in Australia. I don’t believe America or Europe are further ahead, so there are no answers—just misleading information and sad stories.
Keeping active
I like to surf and generally be outside. Although sometimes it hurts or energy levels aren’t there, if I don’t keep reasonably fit I can’t go surfing—and when I can’t surf, I am not a happy camper. So inadvertently, my hobby is my motivator to stay physically active.
3. What advice would you give to a newly diagnosed patient?
Prepare for surgery
One good thing with these tumours is they are typically slow growing, giving you time to prepare for surgery. A month out, I go on a real health kick—I stop drinking alcohol, improve my aerobic fitness, and eat well. I often get comments from medical staff and my surgeon surprised by how quickly I recover from surgery. I am convinced this preparation is the key.
Take control
You need to drive things—educate yourself about the disease, treatment options, and scan options. More than likely you will have a number of specialists looking after you; it’s important they communicate with each other. If you are not comfortable with a decision, don’t be afraid to get a second opinion. Keep records—I have a one-page spreadsheet of all operations and treatments with dates and doctors’ names. It’s amazing how many times you get asked the same questions. I now take copies of the spreadsheet and just give them that.
Find a good GP
You need to have a good GP and be able to see the same GP most visits, otherwise you’ll be explaining your complex situation every time. You will more than likely be the only patient they’ve had with a NET cancer. While they may have heard of the disease, they will definitely not know much about it. Your GP needs to come along the educational journey with you.
You’re a rock star
Be prepared to get a lot of attention and interest from medical staff, especially in hospital. I am usually referred to as “you’re the guy with the Pheo,” which is usually followed by questions. I personally don’t mind, but it can get a bit onerous after a while.
It’s not your fault
When I was first diagnosed I spent a lot of time thinking what I did wrong—maybe I drank too much when I was younger, or smoked, or was exposed to chemicals, or was being punished. None of this is true. There are plenty of alcoholic, drug-taking criminals who live to a ripe old age. Some people win the lotto, others get an Extra Adrenal Pheochromocytoma.
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Dee, QLD
Pheochromocytoma
They found my original tumour incidentally. I had absolutely no awareness that I was walking around with a rare tumour inside and that I was essentially like a ticking time bomb. I went for a routine CT scan due to some lower leg pain and vaginal bleeding. Having previously undergone a hysterectomy, a CT scan was scheduled to determine the cause of any issues. Abdominal adenoma was the original diagnosis, and a follow up scan was suggested. It was this second CT scan that would change my world entirely.
My ‘life saver’ was a visit from a friend , a Doctor in the Army, who noticed my face was very flushed! When I had mentioned this to previous Doctors I was told “it’s menopause”, and ignored it’s relevance.
I still remember asking the young girl doing the ultrasound “So what is that?” expecting her to say something like “Oh that’s your …”. But her more serious and cautious response was along the lines of “You will need to speak to your doctor…”
For years I had felt unwell and not my normal self. I was a confident, happy go-getter who had become tired, anxious and nervous without cause and ultimately developed an extra short fuse.
