Supporting the

Neuroendocrine Cancer Community

Name: Michelle
Neuroendocrine Cancer Site: Primary: Adrenal gland with secondaries in lungs, liver, and lymph nodes behind the aorta
Michelle’s Story
I have suffered for years with sweating, anxiety depression, high blood pressure, high cholesterol, and type 2 diabetes. After several visits to my GP, they misdiagnosed me as having two spleens however the second ‘spleen’ turned out to be a 15cm pheochromocytoma tumour on my adrenal gland. I had my first surgery to remove this in 2017 at the Royal Liverpool Hospital.
I had scans every 6 months and blood work following this to see if I was still cancer-free however they found nodules in my right lung which was confirmed to be pheochromocytoma. In 2020 I had my first lung resection at Broad Green Hospital.

Then in February of 2022, I had my second lung resection as they found pheochromocytoma tumours. After further tests, the cancer was also found in my Liver so I had a liver oblation in the Royal Hospital Liverpool in January of 2023.Since the liver oblation, we found out I had cancer in both my lungs and liver. My doctor’s plan was a sternotomy and a second liver oblation. The worry was it may be too widespread to do this so I went and had a PRRT scan in London which was found to have neuroendocrine cancer in the lymph nodes behind the aorta, both lungs and liver.

Due to it being widespread spread the doctors/specialists have said they need to do systemic treatment, this is why I was put forward for PRRT treatment, told all the positives, and have waited months for the forms to be sent off to see if I can get the funding and also months to hear back. The funding team requested additional information which lengthened the waiting time. A meeting was scheduled for NHS England Tuesday 20th of February and I received a phone call the following morning to say unfortunately they won’t fund the PRRT treatment for me. They did not provide a reason why and my Dr has since requested this.

That night a Just Giving page was made for me following the advice of my doctor and I have been receiving donations to pay privately. I start chemotherapy to help in the meantime on the 29th of February which will give me months instead of the years the PRRT treatment would have gifted me.
Do you have any useful hints and tips you would like to share? 
I’m lucky to have a strong family unit and be surrounded by friends and family who are helping to raise funds for me to receive the PRRT treatment.

As an organisation dedicated to supporting neuroendocrine cancer patients, we’ve witnessed firsthand the challenges many face in accessing PRRT treatment. While PRRT holds promise for extending life expectancy, it’s important to recognise that its effectiveness varies from person to person, and it’s not guaranteed to provide years of additional life. The recent decision by NHS England to deny funding for PRRT highlights the ongoing struggle for equitable access to vital therapies. We stand with patients like Michelle in advocating for improved access to PRRT and other life-extending treatments, ensuring every individual has the opportunity for optimal care.