From dying to living, to hell and back

I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was “The shock effect never wears off“.  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases).

This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as ‘Patient E’. I just felt that someone somewhere might learn something very important.

The Story of ‘Patient E’

In December 2018, Patient E was told ‘Stage 4 Pancreatic Cancer’ and had 10 months to live. Chemo was to be attempted in January in an effort to extend life but in the meantime was told to spend Christmas for the last time with the family, a spouse and 3 young children.   On 2nd January, Patient E was then told (with apologies) it was actually a ‘Neuroendocrine Tumour with a pancreatic primary’.  The only good thing about this story so far, is that they told the children nothing over Christmas. “Why worry happy little people” was the bit of the story which brought out my tears.

Initially I was quite angry this could happen to anyone but I was then calmed by Patient E who now had fresh hope and optimism, perhaps realising that there were possibilities for many more years with the family.

The Story of ‘Patient F’

In March of 2017 I was having bad indigestion and since I already had two cardiac stents went to a local hospital to make sure I wasn’t having cardiac issues. They found a mass on the pancreas and metastasis to the liver. I saw a surgeon a couple of days later and he told me it was inoperable, adding that I should pretty much get my affairs in order. A biopsy was then carried out confirming it was neuroendocrine and we were thrilled. I then received a call a couple of days later, saying they had it wrong, it was not neuroendocrine and they wanted to start chemo ASAP! I then received a further call a few days later, saying they were not sure and needed to do more tests. We then went a different hospital where two different surgeons said that it was inoperable. One oncologist said she did not know; and another thought it might be a combination of the two. At this point. they sent my slides to a NET specialist hospital for their opinion, coincidentally we had already scheduled an appointment there. When we walked into this appointment, the NET Specialist greeted us with a big smile and hug, saying that that both she and the surgeon had reviewed my slides; and that it was definitely neuroendocrine – they could operate. Two weeks later the surgeon removed the mass from my pancreas and my spleen. He said that it was probably there for years and looked like it was ready to burst. I was unbelievably lucky.

So why do these things happen?  Apart from the serious communications lapse by the hospitals, this is another example of the problems we as a community face with the anatomical approach many doctors take with cancer, with some even describing a pancreatic Neuroendocrine Tumour as a type of Pancreatic Cancer (this happens with other parts of the anatomy too).

Patients E and F are not alone, I once wrote a story about rock star Wilko Johnson (of Dr Feelgood fame) who was given a very similar prognosis.  However, Wilko was in the later stages of his life and decided instead of undergoing gruelling chemotherapy, he would forego any treatment and tour with his band in the final 12 months of his life and …….. make an album with Roger Daltrey of The Who. It wasn’t until someone enquired why he wasn’t dead after 12 months, that they re-checked and changed the diagnosis to Neuroendocrine Tumour with a pancreatic primary.  Read the whole story here.

I wonder how many other times this has happened.

Neuroendocrine Tumours with a pancreatic primary (pNET) is a totally different cancer to Pancreatic Cancer.  With Pancreatic Cancer, most people die, quite the opposite with pNETs where most people live.  Read more about the main differences here.

I’m grateful to Patients E and F for contacting me to let me know that my blog and my other support sites have been helpful in the transition from despair to hope since finding out the correct diagnosis. I do hope Patients E and F will keep me updated.

Thanks for reading


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6 thoughts on “From dying to living, to hell and back

  • My Ek

    I went to a doctor with an aching knot under the ear; he gave me an oil to put IN the ear and sent me for a test of my next to perfect hearing and ignored my tumour that was found a year later when I went to another doctor. The oncologist I was sent to based her diagnosis on a preliminary answer from the pathologist, gave me 6-8 months to live without chemo, 1 1/2 years with and not enough time for a second opinion, which I wanted. Three days after my first chemo session the definitive answer came, but none of the three doctors who had had a joint discussion about me looked it up. After the fourth session they told me that I had NETs, but without giving me any information. I had then lost my long hair and had bone marrow issues that made it impossible for me to tolerate Temodal. The new doctors kept me on watch and wait for almost a year, while I felt the tumours growing. I contacted another doctor who in his turn contacted the ward who then let me have a PET-scan, which showed growth and a breast cancer thrown in for good measure.

    This is not intended as trying to be a worst case scenario and certainly not as a plea for sympathy. The most important things I learnt was how much strength we can accumulate when we need it and how important it is to take a front seat in monitoring our treatment. I put my feet down and think I can trust the doctor I’m seeing now, but I won’t let go completely and stay on top of things the best I can.

  • Nicole

    A familiar story, although ours was fortunately not around Xmas, but around the 1st day of our son’s new student life and made the other son refrain from going on a working-holiday-year Down Under and even later, with the NET dx, he was discouraged of going by the specialists… .
    To be fair to the oncologist: he did think about PNET immediatley but didn’t want to give us false hope so didn’t mention it and therefore had to wait till biopsy and pathology info which took some weeks. But yes it is a roller coaster every time again when changes come along (growth different therapies etc.)
    However and this may seem a strange thing to say but 5 1/2 yrs later we are happy it was PNET and not pancreatic cancer.

    Thank you Ronny for your continuous effort to inform all of us, we will keep trying to inform the world !

  • Lori M

    Misdiagnosis seems to be a common problems with NETs. I was originally diagnosed with terminal stage 4 ovarian cancer. Although I have to live with neuroendocrine cancer for the rest of my life, I am grateful for the time I will have with my family as I manage this slow-growing cancer.

  • PRRT Seattle

    This is a crushing experience that could have been avoided. I suffered through a misdiagnosis for a good 4 or 5 years myself. It seems that many gastroenterologists especially are set on finding the more common answers or no answers at all. Thanks for sharing this.

  • Elaine Nord

    We need to push through legislation for better education and screening for Neuroendocrine Tumors. In the US, the CT Legislature(Public Health Committee) is considering HB 6522 to require Continuing Education in Rare GI (including NETS)for all Medical Professionals. This education will help those looking for a diagnosis for their mysterious illnesses and symptoms! After 7 years as a Chronic Cancer Survivor, I gave oral testimony in support of HB 6522.

  • Anne Dabbs

    Ronny, this is the exact reason I follow your writings and many other Neuroendocrine Cancer support groups and educational venues. To receive a cancer diagnosis is such a struggle, but to be misinformed is heart wrenching. Thank you once again, a million times over

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