Neuroendocrine Cancer Site: Lung, Breast, Lymph Nodes and Bones.
Hospital: The Royal Free, London
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My name is Katy Jeanes, I’m 37 years old and in July 2022 I had a biopsy on a breast lump I assumed to be a cyst. After tests and scans, I was given the diagnosis of Stage 4 and Grade 3 neuroendocrine cancer and told my primary was likely to be in my lung, with spread to both breasts, a number of lymph nodes, and bones.
As you can imagine, this came as quite a shock as I was very healthy and active. I suddenly found myself in a world I knew nothing about, surrounded by terminology that was really difficult to grasp and healthcare processes which left me feeling out of control and wondering who to turn to for support.
I had 3 rounds of etoposide and carboplatin but then had quick progression – my breast lumps in particular had increased considerably in size and this had all happened very quickly. I was already in the process of getting a second opinion privately as I am very fortunate to have health insurance through my career. After a bit of research, I elected to speak to Professor Caplin at The Royal Free London and he suggested we start PRRT (Peptide Receptor Radionuclide Therapy) as soon as possible.
Earlier, my local NHS team had suggested either PRRT or the oral chemo, CAP-TEM, but also advised me that getting PRRT on the NHS would not be easy as Lung was my primary site (Lung NETS are still not approved or funded in the UK for PRRT, but there are routes in, notably at the time of writing (Dec 2023), via the Clinical Trial COMPOSE). I had also been put off by the idea of more chemo so soon, as I really did find it difficult to tolerate….from being a member of the Neuroendocrine Cancer UK online Facebook community, I had heard other patients having a good response to PRRT.
My Gallium-68 scan uptake had shown that I had a lot of receptors on my cancer cells which also meant I would be a good candidate. So far, I have had 3 PRRT cycles out of 4, each about 8 weeks apart. The process has been much better than expected.
I travel up to The Wellington Hospital in London the day before, and the nurse there is wonderful. It’s a full day in hospital so I take my laptop and watch Netflix. The following 2 weeks I mainly spend resting at home as fatigue is one of the major side effects. It’s been difficult to adjust to a slower pace of life but the rest is so important and I have to remember how much my body is going through right now. I have also experienced a lot of nausea but the anti-sickness meds work wonders if I stay on top of it. I also have lots of hair shedding but my hair is so thick since it regrew post chemo that it doesn’t show at all. Overall, it has been easier to tolerate than the chemo and I would urge others to investigate PRRT as an option, if suitable for their disease.