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NET Cancer Day   10 November 2024

Easily missed.Take a closer look at neuroendocrine cancer

 #LetsTalkAboutNETs    #NETCancerDay

I was diagnosed with NET after 3 years of searching for a diagnosis.
HEALTHCARE PROFESSIONAL / PATIENT
Corinne (France)

My name is Corinne, I am a 61 year-old GP, married to an A & E doctor, I have two children – a 36-year-old daughter, who is a radiologist married to a rheumatologist. Her in-laws are both doctors. I also have a 34 -years-old son who is a GP in geriatrics and his partner is also a doctor.

How were you diagnosed and how long did it take?

I suffer from a pancreatic tumor that was diagnosed in March 2019 after more than three years searching for a diagnosis. I have had liver metastases since 2021.  My issues began in  2016 with some non-specific symptoms such as fatigue, night sweats, hot flushes. I had tremors especially during the night and when resting, which made me wonder about this type of “fasciculations” as characteristics. Initially, I thought all this came from stress, fatigue and overworking. I worked a lot and I was also going through menopause. I didn’t have a doctor, I was never sick, and had never been off on sick leave in 30 years of professional life. I was my own doctor.

So I was now alone facing these symptoms and my colleagues were very busy, too. I neglected all this until a self-prescribed blood test revealed a slight hypercalcemia leading me on a red herring path of a possible myeloma. I then consulted several colleagues and friends who were hematologists and a professor who explored this further. He confirmed there was no “pre-myeloma”.

I then had some episodic diarrhea, more and more intense abdominal pains for which I took anti-gastric drugs while continuing to work a lot until I decided, after a very intense epigastric pain, to do an abdominal scan. The radiologist, a friend of my daughter, called me in the waiting room to tell me there was a tumor of the caudal pancreas.

From that day on, my whole life was turned upside down and it was the beginning of a spiral.

What treatment have you had and how did it affect you then and now?

Additional examinations followed one after the other and the tumor assessment was a grade 3 pNET with anapath, the extension assessment was negative. There was nothing else.

I was very quickly operated by an excellent surgeon, everything went well and I returned to work after 3 months of sick leave. My young colleague and I had just settled, some time ago, in a new magnificent recently renovated place where everything was going very well. I loved my job and was very happy to come back. My patients were waiting for me after seeing my replacements follow one after the other for 3 months.

I worked in 2020 during Covid and contracted it, of course. After that, I was monitored every three months and was hoping to be cured.

Then in 2021, multiple hepatic bilobar metastases were discovered during a routine scan. Nine courses of chemotherapy treatment were scheduled until October 2021.  Then in 2022, a second chemo allowed for a small regression of the lesions. I had not worked for 2 years. I managed the practice, the succession of a dozen different replacements who followed one after the other every week. I also definitively gave up my position at the faculty of Internship Supervisor (MSU), which consisted of supervising interns in the practice and I liked it very much. I tried to ensure my patients were always taken care of. They were grateful, understanding, and patient, waiting for me, checking on me, and sending me messages of support in the course of two years.

What impact has the diagnosis had on your personal life?

My health was not too altered, I tried to continue sports, running, pilates and mountain biking even during my chemo. Thus, when meeting patients, I felt obliged to justify my absence from the practice.

Then it was time to decide whether I could go back to work or not. I was offered a disability status for a ridiculous amount, barely a quarter of my initial salary.  If I accepted it, I had to certify on my honor that I would never do any consultation again, that my practice would be permanently closed, and that I would no longer be registered with the Order of Doctors. It’s all or nothing and it grieved me a lot. I asked to go back to part-time work but I was told that it was not possible. I tried to appeal evoking an ability to work “a little” but it was refused. No longer able to take on my previous workload and faced with the uncertainty of the evolution of the disease, I was forced to opt for disability.  The patients were aware that I would not come back but fortunately one of my replacements agreed to succeed me.

I’m now in a different life, it took me a long time to turn the page. And even though I’m busy through sports, travel, home, children, grandchildren and many other things, I still miss my previous life. However, I’m keeping my spirits up, I’m lucky there is no considerable impact from the disease so far and this allows me to lead an almost normal life.  Unfortunately, my last MRI of 8 days ago shows that my lesions are progressing again and I have to go back to chemotherapy.

On a medical level, this disease requires multiple consultations. I am fortunate to be under the care of several professors, including an oncologist, endocrinologist, surgeon, radiologist, and nuclear medicine physician. The monitoring process involves numerous consultations, additional tests, and heavy and expensive treatments, without any real hope of a cure.

What lessons have you learnt along the way?

I would like to mention that in my 30-year career, I have never seen a patient with NETs.

Neuroendocrine tumors (NETs) are briefly discussed during medical studies, but in a very limited manner. Similarly, my colleagues, family members, and general practitioner friends are not well-informed about this condition. It seems important to me that they are educated about the initial symptoms, which can be diverse, sometimes nonspecific, but may lead to considering this diagnosis and detecting the disease early.

Did you get any help from a patient organization during your journey?

I would like to express my gratitude to APTED for everything this patient organization has provided me with: support, information exchange, and symposiums. Even though I am a doctor myself, sharing experiences and participating in these events greatly guided me.

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NETs are more common than brain, ovarian, and cervical cancer and incidence is on the rise.

We need the help of our global community to raise awareness and improve diagnostic times and the quality of life for NET patients around the world.

On November 10, help us spread the word

Know the symptoms. Push for diagnosis. #LetsTalkAboutNETs