I am Karin from Belgium, 64 years old. I live in a green village in Limburg and am a mother of 3 children and grandmother of 3 precious grandchildren. Walking, dancing, painting, reading, my family and friends make me happy.
How were you diagnosed and how long did it take?
I was diagnosed with a pancreas-NET in March 2011.
The first complaints started around my 46th birthday, six years before the diagnosis. Low blood pressure and floaters, sweaty, hot flashes, tiredness, feeling unwell, occasional unexpected abdominal pain and diarrhea, lots of bubbling in the abdomen and more migraines, sometimes lower back pain and difficulty getting up from a squat. These symptoms were varied and usually short-lived so I paid little attention to them. The migraine was part of my life from an early age, so I was used to some discomfort.
The GP saw me about every six months because of these vaguely diverse complaints. Blood tests showed nothing and we continued as usual…
Two years before the diagnosis, I started vomiting heartburn during migraine attacks, for which antacids were prescribed. Hot flashes and fatigue also became more frequent, as did insomnia. Everything was assigned to the onset of menopause, stress, busy family, job as a home nurse and caregiver for parents.
An NMR was taken in early 2011 after I noticed additional pale and grayish stools. Then the correct diagnosis was immediately made, a tumor of 6 cm on the tail of the pancreas and grown into the spleen. For my GP, I was the 2nd NET patient in his 26-year career. He referred me to a surgeon with good knowledge of NET.
On April 1st, I underwent a splenopancreatectomy (removal of the spleen and pancreatic tail). There were no metastases. All previous complaints disappeared after the procedure. Only the migraine reared its head when I took too much on my plate.
I was followed up every three months by a very involved oncologist who, if necessary, consulted with a professor from a NET knowledge center.
When I wanted to go to work almost a year later, liver metastases were found and I underwent a partial liver resection.
What treatment have you had and how did it affect you then and now?
Already a year later again liver metastases and a referral to the NET knowledge center. Here they started with Somatuline 120 mg (exactly from the clarinet study for P-NET’s) in the hope of slowing down the growth to enable a subsequent liver surgery. This was done at the end of 2014.
The Somatuline injections were continued and I remained stable for over 3 years.
At the end of 2017, metastases were again found in the liver, but also 2 lesions in a rib and vertebra. For this I received a PRRT treatment from January to June 2018 that worked well with reduction of metastases.
Now, 5 years later, I am still stable. Every 28 days a nurse comes for the Somatuline injection, so I still have a short chat with my colleagues.
I could not resume my work as a home nurse because of the multiple scar hernias and faster fatigue. It was very strange at first to be on the other side of the care and to have lost confidence in your body.
Half-yearly checkups remain exciting, but I know there are still treatment options.
Who’s been your hero? Perhaps it was you!
My husband and family are the biggest heroes in my journey.
When the diagnosis came it felt like a relief, something was really wrong. I once asked my GP; “Is it in my head, then?”
In the early stages of my illness there was little information about NET. Thanks to the patient group ‘NET & MEN Cancer Belgium’ we are now kept informed of the latest developments.
With more than 12 years on the cancer counter, we continue to look ahead …
