Neuroendocrine Cancer: looks can be deceiving

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Is this the face of a cancer patient?

Yes, it is actually.  This photo was taken on 31st October 2010.   Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases.  Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week’s recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital.  Other surgeries followed.  In 2023, despite many side effects of treatment since 2010, he still looks like a picture of health, ……… but you should see his insides

Looks are deceiving.  Perceptions are powerful

It sometimes appears that every other cancer awareness article or TV advert involves someone undergoing chemotherapy and has no hair.  Many cancer advocacy groups and healthcare related websites like to talk about cancer in these terms, sometimes using a child for added effect.  This is clearly playing on the natural emotions we all feel when we see someone young in this condition.  

This issue was brought home to me when I once had to attend my local hospital to receive my monthly cancer injection. That hospital allocated this work to the chemotherapy department.  While I was there, I was sat next to patients waiting on their chemotherapy treatment – the “Chemo Ward” sign above the door gave it away.  As I looked around; the temporary beds and the waiting room were full and all I could see were people who didn’t look as well as I did.  Some had hats or bandanas partly disguising the loss of hair. I really felt for them.

No matter how many visits I made, I couldn’t help feeling out of place on a Cancer ward. I’m not sure why I felt like this; after all, I had metastatic cancer and I’ve had some very scary surgery and monthly somatostatin analogue treatment since 2010. However, this thought didn’t seem to balance it out – some of these people may also have had surgery and were now having adjuvant (follow-on) chemotherapy to get rid of remaining cells. Others could have been heading for surgery after their neoadjuvant chemotherapy treatment reduced the tumour bulk. Fortunately, I only had 17 visits to the hospital for this cancer treatment, I now receive my cancer injection at home

I look well but you should see my insides!
I look well but you don’t see my battles!

I just wish these healthcare and advocacy organisations would write an article or produce an advert about my lack of terminal ileum and ascending colon, the malabsorption issues as a consequence of that, my missing mesenteric lymph nodes, my retroperitoneal fibrosis which is still threatening one of my ureter vessels, not forgetting to mention my diseased liver, my lack of gallbladder, my left axillary lymph nodes (and the mild lymphedema I suffered after and which caused reduction in some nerve feelings after their removal), my left supraclavicular and left axillary lymph nodes, my thyroid lesion and my hypothyroidism which may be due to that thyroid lesion and needs a daily pill, my small lung nodule which continues to loiter, my rib lesion waiting to become painful; and my pulmonary emboli which I have taken anticoagulants for since January 2011.

However, they won’t because it just wouldn’t be an effective picture, nor would it be as powerful as one about a person with no hair.  Just saying!

My illness may be invisible, but I am not

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.  

Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person’s actual capabilities, and how they cope with their condition. 

I am sure those reading who have a Neuroendocrine Cancer and other diagnoses will find something similar to their own experiences. 

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You may also enjoy these similar and related articles

Things not to say to a cancer patient – click here

Shame on you! – click here

Things are not always how they seem – click here

Not every illness is visible – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

I don’t look sick, sorry not sorry – click here

You must be doing OK, you’ve not had chemotherapy – click here

Read more of Ronny’s Neuroendocrine Cancer Awareness Posts

Click here Awareness – Ronny Allan – Living with Neuroendocrine Cancer or on the photo

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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. 

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.   

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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3 thoughts on “Neuroendocrine Cancer: looks can be deceiving

  • This one really resonates with me, Ronny. I have the same feeling every time I visit the cancer clinic for scans, follow-up appointments, etc. I feel like I really don’t belong there even though I’ve been treated for three unrelated cancers over the past 10 years. One wouldn’t know it looking at me though because I never lost my hair!
    People who know me, but not really well, assume that I’m cured because in the minds of so many, when you have cancer you either die or you’re cured. They have no concept of a chronic cancer like ours.

  • Joe Sclafani

    Your article on “Looks can be deceiving,” hit home. Since we do not look sick and most every one I talk to never heard of our cancer, it’s no wonder that there isn’t a heck of a lot of research into the cause and treatments for our cancer. Thanks for being out there and writing what you feel.

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