My name is Julie Rose, I am 48 (49 in November) and I used to enjoy taking part in a lot of fitness, running, cycling, obstacle course races and going to the gym. I am slowly getting back into fitness as it was a huge part of my life.
How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?
I found a lump in my neck one evening, it felt uncomfortable for a second, which is what brought my attention to it. I noticed that I didn’t have one on the other side of my neck, so I was immediately concerned.
I went straight to my GP surgery the next morning and the Dr referred me to my local hospital via ‘fast track’ obviously I was quite worried, but i reassured myself that it was more likely to be nothing serious.
After a couple of hospital appointments, I was given the diagnosis of Medullary thyroid cancer, 5 weeks later. I wasn’t expecting that. I was sent for a CT scan to see if it had spread and was told that I could carry on and go on holiday with my family in a couple of weeks, as nothing would change in that time.
It was day 2 of the holiday and I received a call from my cancer nurse to tell me that it had spread to my spine. I had 3 lesions that they could see and the one at the base of my spine was compressing on my spinal cord. She told me that they were very worried it may snap, and if I was at home I would be told to lie flat on the floor and wait for the ambulance to arrive.
There was talk of flying home immediately or going to Paphos hospital for emergency surgery. As I had no symptoms, they said I could stay, but to be very careful, no jet skiing, banana boating or anything that may jolt my spine. I returned home late on a Wednesday night and went straight to the hospital the next morning, an MRI also revealed it had spread to my lungs.
I had surgery the next day to remove the cancer the base of my spine and they filled the hole where the cancer had been with ‘cement’. I had just recovered from that operation and I had a total thyroidectomy 3 weeks later and lymph node dissection from two parts of my neck.
What treatment have you had and how did it affect you then and now?
I started a clinical trial ( Libretto 531) in May. I am taking Selpercatinib which is a second-generation TKI. It has very few side effects at all, I have no pain and I have had 51% tumour shrinkage in the lesions that they are tracking.
One in my liver has disappeared and one in my lungs is described as “too small” to measure. I feel very well and am living life as a normal person, you wouldn’t know I had stage 4 cancer if you saw me in the street. I will need to take Selpercatinib until it stops working, which hopefully will be for a very long time.
This drug is only 4 years old, so it is still very new, but there are people in my support group for MTC who have been on the original clinical trial and are still doing very well, so there is hope.
What impact has the diagnosis had on your personal life?
Without a doubt, it has had a huge impact on my life. This last year has been very difficult with so much bad news in the beginning. It was very difficult mentally but I tried to look for a positive in everything that happened so that I could try to deal with it. It has had a massive impact on my 3 children, my parents, and my partner, we have all suffered so much sadness and uncertainty.
I look back at photos of myself before my diagnosis and I feel that it is another person that I see. That person didn’t have anything really to worry about, I enjoyed life and everything it brought me. Even though things are much better now, I will never be the same again. Living with an incurable diagnosis changes the way you feel about things, and it’s not just me, my family feels that way too.
What lessons have you learned along the way (if any)?
Don’t put things off that you don’t need to, make time for those you want to spend time with. Celebrate every birthday as a celebration of life and not “just another year older”. Don’t waste time on insignificant people just to be polite. I feel that I’m less tolerant of people who complain about trivial things. Money doesn’t have the same value to me anymore either, as long as I have enough to pay the bills and do things I’d like to do, that’s enough.
Who’s been your hero? Perhaps it was you!
My heroes are the people in my support groups, the people who I don’t know and who have given me such good knowledge to ask for a second opinion in my treatment plan to ensure I get the best care for me. They are still there as I am now for them the newly diagnosed scared people. We are all there to support each other and share symptoms, treatments, and knowledge.
I also think my Dr at the Royal Marsden, Dr. Kate Newbold, and my clinical trial nurse Tara Hurley are my heroes. I trust them with their wealth of knowledge in MTC and TKI’s, and whenever I see them, I always feel like I’m their only patient.
Did you get any help from a patient organization during your journey?
Yes, as above. I started in the NET cancer group and realized that nobody was talking about MTC there, I felt very alone. A search in that group though led to the 2 MTC groups that I’m in now. Without the support from these groups I would not have been an advocate for my journey.
How are you now?
I am pain-free and well, and I am starting to plan a little. I don’t have so many black thoughts anymore and I will restart the gym regularly very soon! This is my new life now, but I am grateful to have this chance to have a life.