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Ignore this post about Neuroendocrine Cancer

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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.

Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones and 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 steatorrhoea, stomach cramps and bloating, asthma, facial flushing, menopause, weight loss, anaemia, fatigue, tachycardia (fast heart beat), pain, and nausea. These may manifest themselves as common endocrine conditions e.g. it can mess with your blood sugar levels.  These are a few examples, there can be many other confusing symptoms. 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 spread 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.

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.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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24 Comments

  1. Laflamme Bella says:

    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.

    Liked by 1 person

  2. Desi says:

    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.

    Liked by 1 person

  3. Christine says:

    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.

    Liked by 1 person

  4. Ingrid says:

    Thank you for all the valuable information you post on this blog. I have a daughter who is affected.

    Ingrid

    Liked by 1 person

    • ronnyallan says:

      Thanks for the kind words. I hope your daughter is getting good treatment?

      Like

      • Ingrid says:

        Hi – I just wrote you back but my computer froze up – so… did you receive my comment?

        Liked by 1 person

      • ronnyallan says:

        only your original comment?

        Like

      • Ingrid says:

        I think – now.. you got it? yes?

        Liked by 1 person

      • ronnyallan says:

        yes thanks, replied

        Like

      • ronnyallan says:

        received now thanks!

        Like

      • Ingrid says:

        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.

        Liked by 1 person

      • ronnyallan says:

        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.

        Like

      • Ingrid says:

        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.

        Like

      • ronnyallan says:

        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 😃

        Like

      • Ingrid says:

        Yes, fingers and toes…I’ll keep in touch. Thank you.

        Ingrid

        Liked by 1 person

  5. Jan guhl says:

    Ronny thanks once again for your insightful blog.

    Liked by 1 person

  6. Mary Anne Edwards says:

    Ronny, as usual you wrote an excellent to-the-point post. Thank you.

    Liked by 1 person

  7. 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.

    Liked by 1 person

    • ronnyallan says:

      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

      Like

  8. SharLar6074 says:

    This is a great post Ronny!

    Liked by 1 person

  9. SharLar6074 says:

    Reblogged this on sharlarblog and commented:
    Great post from Ronny Allan!

    Liked by 1 person

  10. Reblogged this on Tony Reynolds Blog and commented:
    Cancer does not care if you read this blog!

    Like

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