Supporting the

Neuroendocrine Cancer Community

But Debra, you look so well …

Some of you will recall that I was diagnosed with Neuroendocrine Cancer in February 2021, with a primary site in my rectum and metastases to my liver.

This is an update on my life and treatment now.  I finished a course of 4 cycles of PRRT (Peptide Receptor Radionuclide Therapy) in January 2022. PRRT is a targeted radiotherapy treatment that delivers radiation to specifically targeted cancer cells, with minimal effect on healthy cells to try to stabilise growth and with the possibility of shrinking some tumours, too.

I’m pleased to report that I tolerated the treatment very well, with some of my tumours showing signs of shrinkage, and with no spread or growth on the others.  STABLE!  My favourite word that keeps me smiling. I have check-ups that consist of a CT or MRI scan and bloods test every 3 months.

This is my only ‘treatment’ at present. My Oncologist calls it ‘Watch and Wait’.

“So, has it gone?” NO!

“Are you cured?” NO!

“You don’t even look sick?” How should I look?

These are comments I often get now. And as much as I know these comments come from a place of love, they can also sometimes have me quite confused emotionally.

Not having medication and having to wait every 3 months to confirm all is still stable is a challenge in itself. When I finished treatment, I started to get horrible bouts of vomiting during a 4 -6-week period which would usually last for up to 42 hours. I had an ultrasound scan in August 2022 which confirmed I had developed gallstones and I was treated for IBS, but the sickness started to last longer, and in November 2022 I was hospitalised with pancreatitis.

With the fear of surgery looming 2 weeks before my birthday and a planned trip to Athens hanging in the balance, the support of family and friends, and a great team of doctors. I pulled through without needing immediate surgery and even managed to go on my birthday trip.

At the time of writing, I’m on a waiting list to have my gall bladder removed, to avoid any more pancreatitis attacks. I’ve been symptom free since that last attack and even managed to get a long overdue trip back to Trinidad in February to take part in the Carnival (see photo). It’s a trip that I worried I would never be able to do again when I was first diagnosed, which ironically fell 2 years to the exact day of my diagnoses in 2021. So you can imagine some of the emotions I felt.

I now treat most checks ups as routine and feel positive that I’m being monitor regularly.  I’m cared for at one of the UK’s NET Centres of Excellence in London.

I often reflect. I’m appreciative of my journey so far, as I know everyone is very different with this cancer. I chose not to see the negatives in my journey, which helps me to continue to achieve what I love to do. I consider myself quite spiritual and this helps me when occasionally I might feel overwhelmed.

I choose not to fear the unknown.

Until I’m told otherwise, I will try to see the positives and blessings in my life journey and continue to share my experiences in the hope they can support someone else with this diagnosis.

I’m always happy to answer questions for newly diagnosed patients, too. Don’t sit and worry about things you can’t control – talk to someone at NC-UK, it helped me and could help you, too.