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Neuroendocrine Cancer: Patient Power!

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patient-storiesThere’s a saying that the patient is the most underused person in healthcare and I think there’s a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it’s less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors.
If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people.  However, the ratio of NET Cancer patient stories still does not seem to be right.  I’m not ‘dissing’ breast, lung, bowel and prostate cancer patients, all credit to them for pushing their cancer awareness – respect!
I truly believe that patient stories, whether they are written, presented live or recorded for mass media, are an extremely valuable tool in spreading awareness of NET Cancer.  A ‘human being’ talking is a thousand times more potent than the endless stream of ‘memes’ and cartoons that seem to pervade our community – one reason why I don’t use them on my own site. It’s also the reason why I always jump at the opportunity to tell my story, because it’s real, it’s factual and I’m sensing an increasing willingness from the medical and healthcare communities to use patients in this way.  Quite right too, patients have a lot to offer.
Ipsen presentation
I’ve been video’d several times in the past 12 months and one day you might actually get to see those, there are some contractual reasons why I cannot yet share them with you.  It’s quite a scary thing to do and I found it mentally exhausting – but very worthwhile.
I was therefore delighted to find this recently published group of videos from Cure Connect.  Within the clips, there are 2 patients stories, one Pancreatic NET (pNET) and one Carcinoid and they are interspersed and integrated by input from NET specialist Dr. Reidy-Lagunes (a very knowledgeable and enthusiastic speaker).  Each clip is only around 5 minutes long so not too taxing.  The pNET patient, Michael, is a great supporter of my blog and one of the first NET patients I met on twitter.  I’m very thankful to him for alerting me to the videos.  Dr Reidy-Lagunes is fast becoming a ‘fav’ of mine and I note she emphasises some of the things I’ve been consistently saying in my blogs; i.e. this cancer can be treated and it’s not as rare as people think.
 ccf-logo
Another bonus is the addition of Carcinoid Cancer Foundation (CCF) and my friend Grace Goldstein.  CCF is the largest and most respected NET Cancer organisation on the planet and Grace works tirelessly to spread awareness and help patients including me!  CCF was the first site I found and remains my go-to site today.
Well done Michael and Brenda.  Thanks also to Dr. Reidy-Lagunes, Grace Goldstein/CCF and Cure Connect for once again highlighting our cancer. 
Take your pick!

 

Thanks for reading and watching!

Ronny Allan

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1 Comment

  1. admin4banets says:

    I agree that Dr Reidy is knowledgeable and enthusiastic, and I particularly appreciate how crystal clear she is when she speaks. I never have any question as to what she is communicating because she communicates so well. I’m very grateful that she is such an enthusiastic member of our community. Just wanted to mention though that, in the videos you list and in many others I’ve seen of Dr Reidy discussing NETs, my sense is that she is perhaps a tad too conservative. Although she doesn’t say so explicitly, FDA approval for a particular type of NET seems to be very important to her. While I understand this “safe” approach, I am concerned about patients who may not fit the study so perfectly, but who could very likely be helped by a treatment for which their group was not included. Other experts in the field have had good success applying treatments that were approved for one NET group to another group. I think this is particularly important when a NET patient otherwise runs out of treatments to try. In my humble non-medical opinion, I see no downside to trying something that worked for other NET patients, particularly in a setting where all of the more obvious treatments have been exhausted.

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