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Ronny Allan
Ignore this post about Neuroendocrine Cancer? Actually, you must share it widely, people out there will have this disease and need a diagnosis.
When I was diagnosed, I wasn’t feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the ‘long game’ and will sometimes take years before it’s finally discovered. It is very very very sneaky.
Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking – however, it will also try the physical route.
As it spreads, it can become noisier through growth but also by secreting excess amounts of hormones and other substances. It knows that tumour growth and these excess hormones and substances will mimic routine illnesses such as IBS, diarrhea, stool changes including steatorrhea, stomach cramps and bloating, asthma, facial flushing, menopause, weight loss, anaemia, fatigue, tachycardia (fast heartbeat), pain, and nausea – a real witch’s brew of symptoms. These may manifest themselves as common endocrine conditions e.g. it can mess with your blood sugar and thyroid levels. These are a few examples, there can be many others. Neuroendocrine Cancer thinks this is great because it fools doctors into misdiagnosing you with something else which means it can continue to grow undetected and unfettered, spreading further inside you.
If nothing is done to stop its relentless growth, it will eventually kill.
However, sometimes an inquisitive doctor or nurse upsets its progress by thinking ‘outside the box’. Neuroendocrine Cancer hates when people are aware of its devious nature and hates when people know which tests can be used to find it and which treatments are best to attack it. Inquisitive, proactive and determined patients can also add to this effect and sometimes a bit of luck is involved. Diagnosing the undiagnosed can be really difficult.
It doesn’t give up easy and tries to work around your treatment. It knows your treatment will come with certain consequences and it will try to exploit this situation by keeping you guessing between cancer activity and these consequences. It really hates observant medical staff and patients, particularly those who understand Neuroendocrine Cancer.
Unfortunately for Neuroendocrine Cancer, there is now more knowledge about its devious activities and the latest statistics indicate it’s starting to be caught earlier. Nonetheless, we cannot afford to become complacent.
Neuroendocrine Cancer hates awareness and it will be extremely happy if you don’t share this post.
Disclaimer
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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Other than the Pancreastatin test anything else?
I will have an appointment with my primary tomorrow and i am assuming the 5-HIAA will be repeated.
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I’m baffled. You could consider trying the capsule pill endoscopy, better than exploratory surgery? Did you have the ‘Extended’ colonoscopy, where they pop the scope into the terminal ileum ?
I know I’m frustrated as well and that’s why Stanford also said i am a mystery. I will consider doing the encapsulated endoscopy then, I believe only a regular colonoscopy was done but I’m not sure. But they do say that my Flushing and elevated Chromogranin A test cannot be denied of a very early NET.
I get all that. ‘Tissue is the issue’ . An elevated marker test on its own does not normally constutute a diagnosis
You need to back up the elevated CgA with a Pancreastatin test. Have you had 5HIAA either blood or urine version?
Yes in January the 5-HIAA urine was slightly elevated and Chromogranin at 56. I have not done a Pancreastatin test. I want to really thank you very much and I truly appreciate your support for i have been lost and depressed. I came across your info on Pinterest about NET early signs of late diagnosis.
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I have been suffering for decades with serious IBS that i get diarrhea every night almost on a daily basis since my late 20’s and now I’m 52, i just had to learn to live with it. Then I was diagnosed with Idiopathic Anaphylaxis last year November 2016 because I started to get monthly flushing that started Sept, symptoms like Anaphylaxis where initially would get a painful intestinal cramp for 20 secs then my fingers would have burning sensation that my entire body would turn deep red and hives, occasionally i would swell up around my lips and eyelids. One significant symptom with this my head and neck especially my ears are burning and this would last for 4 hours. But i was not sweating. Benadryl would help and never had to use an Epipen. Late January i was referred to allergy dept in Stanford they described my symptoms a mystery.
I got tested for chromogranin A and the numbers were at 56 now I’m diagnosed with Carcinoid. Endocrinology dept in Stanford denied my case but Gastroenterology took me there they had me do Dotatate Pet scan, endoscopy, colonoscopy and MRI which all came back normal they couldn’t find anything. Gastro did discover i was producing excessive amounts of bile acids and Welchol medicine helps and acts as a binder. Wow this now became a life changer i had no more diarrhea.This year months of January-April the flushing was now weekly, but if I didn’t have any flushing that day i would experience that head and neck warmth burning sensation that last for about an hour and sometimes have it twice a day. In addition i would also experience a light stomach cramps. In April the Chromogranin was at 5 so i was told Carcinoid went dormant. April – June i had no flushing but daily had that head and neck heat burning sensation. Early July i had a flushing attack. Stanford allergy was still puzzled and thought it could be Mastocytosis. They wanted a Tryptase test next time i get a flushing to confirm if its Mastocytosis and to check my Chromogranin numbers which happened
Aug 16, Tryptase is normal but Chromogranin test is elevated to 77. I still experience that head neck and ear burning sensation on a daily basis and sometimes twice a day. Also have that intestinal light butterfly cramp symptom . I have requested Stanford to internally refer me to Endocrinology dept so i am waiting by this week to get an answer. I am just wondering what Chromogranin high numbers test would they take a patient in. I have been so depressed and frustrated going through this so I am glad now to have found this support group, and have read your informative links as well.
Thank you so much !
Sorry to hear about all this. In regards CgA, please let me know the reference range as different labs have different ranges. You might want to ask them to test Pancreastatin which I’m told is more accurate and less likely to be skewed by other factors. If I’m reading this right, they still do have any clinical evidence of a tumor anywhere? Having diarreah for that long without any clinical evidence of a tumor doesn’t seem right to me, perhaps there’s another cause. Flushing can also be caused by a number of things. Have a read of my post https://ronnyallan.com/2015/10/05/i-bet-my-flush-beats-yours/
….. and https://ronnyallan.com/2016/09/28/neuroendocrine-cancer-tumour-markers-and-hormone-levels/
Gastroenterologists diagnosed me through my life with severe IBS due to the type of career i have. Endoscopy and colonoscopy test were always normal. Last year Nov – Jan, i was given Prednisone 20-40mg daily for 3 months and because i was not improving at all my primary physician suspected then of a NET due to the diarrhea history i had and flushing symptoms were getting out of hand. The normal range for the lab is 15 below is normal. And yes there is still no evidence of a tumor to be found but the Chromogranin is more elevated at 77. One physician that i know recommended a encapsulated endoscopy next but I don’t if that would be a big help because it would take random pictures and Carcinoids would be submucosal . At this point i am confused and waiting for next test, Stanford and my primary (outside Stanford) , friends or relatives who are physicians thinks its a Carcinoid at an early stage. I know it doesn’t make any sense that there is no tumor, at the same time i will buy that which i am glad there isn’t.
A gastro once told me that rather than people being misdiagnosed with IBS instead of a NET, many people do actually have IBS but that it had been masking the NET. Has anyone mentioned somatostatin analogues and a Gallium 68 PET scan (NETSPOT) ?
Not yet.
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Just spotted you had dotatate PET above. That is Ga68 NETSPOT.
Yes i had a 5-HIAA urine last January that was slightly elevated with Chromogranin A that was at 56. I have not done the Pancreastatin test yet. Tomorrow will see my primary and hopefully get an answer from Stanford to get in Endocrinology. I want to thank you very much for this support I really truly appreciate it. I have been so lost and depressed.
I came across your info on Pinterest about NET early signs of late diagnosis just yesterday. I am assuming my primary will want to redo the 5-HIAA again. What else should i ask my primary?
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Eleanor and Maui566 is the same
I experience diarrhea around a week before I am due for my next injection and breakthrough flushing. After the octreotide I experience the complete opposite and suffer from constipation. Si sick of this yo yo effect.
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So glad to hear about Neuroendocrine . Had two surgeries already. I’m Canadian live in Northern Ontario. My family DR. doesn’t Know to much about it. So glad to read you.
It took more than 10 years until I was diagnosed with Glucagonoma, which accounts for only 5-10% of PNETS. My initial symptoms were stomach ache, weight loss, and depression, which, as the article said, could be attributed to a plethora of conditions. I am so glad that I am still alive, and I am so thankful to my doctors who never gave up on me the whole time we were on a “wild goose chase”.
Thank you so much again, Ronny, for all the work you are doing in increasing awareness of NETs. Glucagonomas are among the rare PNETs, so if I may share the 4 Ds of Glucagonomas: Depression, Diabetes, Dermatitis (rash), and Deep vein thrombosis (e.g., blood clot in the legs). Not all of these findings may co-exist in each patient. I consulted so many psychiatrists, and they were all baffled why my anxiety/depression could not seem to be controlled through the years, given that I am basically a happy person with a happy life. After the diagnosis, one of them told me that she has learned from her experience with me to always dig deeper to rule out physical causes of a psychological illness.
thanks, I’ll be sure to add that to any blog I write about pNETs!
I was so lucky to have has a family Dr and a gastroenterologist who both thought outside the box. Grateful to them every single day.
Thank you for all the valuable information you post on this blog. I have a daughter who is affected.
Ingrid
Thanks for the kind words. I hope your daughter is getting good treatment?
Hi – I just wrote you back but my computer froze up – so… did you receive my comment?
only your original comment?
I think – now.. you got it? yes?
yes thanks, replied
received now thanks!
I think she is. At Stanford Medical Center, Palo Alto, CA – her attending physician is Dr. Pamela Kunz. My daughter had stomach issues on/off a few times annually – for years. Sometimes very bad, including ER visits… they checked her, ran blood, etc. all to no avail. Then, on March 30-31, 2014 she got very sick, bad stomach pains, constantly vomiting all through out the latter part of the day and all night. At 4 in the morning we went to ER at John Muir Medical Center in Walnut Creek, CA, a CT scan observed an abdominal blockage and a “mass” in her small gut. Surgery followed, and the surgeon came out after almost 3 hours and announced that he had removed an apparent carcenoid tumor, approx 2.5 cm, 14 cm of small intestine and 13 lymph glands. Pathology came back with stage IV carcenoid, NET tumor – malignant. 3 of the lymph nodes were bad. She recovered well after surgery and went back to work in 6 weeks. We felt that while treatment at this medical facility was fine, we wanted someone to watch her now that was a specialist in this type of rare, weird cancer. A friend found Dr. Kunz at Stanford where they have a department devoted to this particular cancer type. We have been seeing her since then. My daughter has scans and MRIs and blood tests about every 4 months. She has been fine. Then the CTscan and MRI last December, 2015, showed tiny cell lesions in her liver, 1mm, 2 mm – about 3 or 4 like that. Also, since this time she had a upper body CT scan too, they saw something in both her lungs, however, since they had never scanned her there, they can’t tell if this has always been there, could even be scar tissue – or what. She had no symptoms of anything. No flushing, no nothing. Current and most recent MRI/Scan whowed the same – but with no increase in size or change. No swollen glands anywhere – nothing. EXCEPT – her blood test (this time, which would be April 8, 2016) had much higher markers than before…which may be an indication of a change – somewhere. She has a follow-up appointment with Dr. Kunz in late May. We shall see…..and we remain hopeful.
Ingrid, you are very lucky as Dr Kunz is a well respected NET specialist. She is in good hands. Her spread of disease is quite similar and the liver tumours don’t look too bad at this stage. I have a small lung nodule (3mm) and they are not worried about it and it is constantly checked on each scan (apparently many people have nodules). When you say blood test, which one do you mean? Interesting about the symptoms so perhaps they have caught this a little bit earlier. Some people have non-functioning tumours but with carcinoid metastasised, they are normally functional in some way.
I mean the Chromogranin A blood test. her current marker was 140. Used to be in the 70ies. However, we have to wait and see what Dr. Kunz makes of it, I guess. Maybe she’ll also do the 24 hour urine collection again. She does not eat any red meat what so ever and has been on a very low calorie/carb diet for 3-1/2 months now, and showed some anemia which could have a little something to do with it…??I read and I read and I read about what it could, would and should mean. A mother’s worry, you know.
Good luck with those tests, please let me know how she gets on. It’s high but not terribly high. Could be a spike. Fingers crossed 😃
Yes, fingers and toes…I’ll keep in touch. Thank you.
Ingrid
Ronny thanks once again for your insightful blog.
Ronny, as usual you wrote an excellent to-the-point post. Thank you.
All things add up now, we lost our daughter in May 2015, Louise Bosley age 31, hers was the ugly, hers was in the wrong place, hers was rare, 9months from diagnosis and we had lost her, but she had been unwell for a long time, some years before with one thing and another.
So please be aware.
Don’t be like us, a shattered heartbroken family.
Lorraine, I was so sorry to hear about Louise which I saw on your Facebook site which I’m still following (as NET Cancer Blog). Neil Pearce is also my surgeon and although he no longer practices, I’m sure he will have tried his best.
I will continue campaigning so that more people can be diagnosed earlier. Thanks for taking the time to comment Lorraine and I’ll be thinking of your family once more today x
This is a great post Ronny!
Everyone should pin this on their local doctor’s door!
Reblogged this on sharlarblog and commented:
Great post from Ronny Allan!
Reblogged this on Tony Reynolds Blog and commented:
Cancer does not care if you read this blog!