Neuroendocrine Cancer - a Doctor's experience

1 minute read time.

When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now.  I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening.  In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo.

As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to read a story by Dr Michael Richardson from North Carolina USA.  Diagnosed in 2011, he talks about his diagnosis and treatment for Neuroendocrine Cancer which is the basis of my blog.  Although Dr Richardson was not a Neuroendocrine Cancer expert at diagnosis, he has been able to put his medical knowledge and clinical understanding to great use.  Not only has he carefully interpreted his diagnosis and his treatment plan, he has also been able to explain the detail in a very understandable way - great for patients but also very useful for medical staff not familiar with Neuroendocrine Cancer.

This blog is to consolidate his patient story written in sections and as far as I can see it only appears to be published in his local newspaper where he is a guest contributor.

His story so far is written in three parts comprising a number of sections as follows:

Section 1 - Parts 1 - 4.

Section 2 - Parts 5 - 7.

Section 3 - Parts 8 - 9.

Section 4 onwards will follow when I have it (if you like my Facebook page, you will see future updates as they are published ) - click here and 'Like'

Thank you for reading

Ronny

I don't post everything on WordPress so please like my associated Facebook page to keep up to date (click here) (please make sure you have not already liked the page, otherwise you might end up 'unliking' the page :-) )

Disclaimer
My Diagnosis and Treatment History

Anonymous
  • Hi, I am a 57 year old lady and my journey started 12 weeks ago, I went to my doctor with an embarrassing bowel problem, she was a new GP and seemed concerned so she referred me for a CT scan with dye on a Sunday, I came away just knowing that I would have to wait a while for results. On Friday of that week my normal GP knocked on my door, I thought he was here to tell me something about my mum as she had recently had to go into a care home, he quickly stopped me while i was asking and asked if he could come in and sit down with me. I have suffered with lots of health problems over the last 10 years so i wasn't particularly concerned initially, however he then said "i'm here about your scan results, they have found a 2cm growth on your Pancreas", i felt like i was moved to another universe and looked at my other half who had tears in his eyes, my GP asked if i had any questions, I couldn't think so my other half asked him if it could be benign, the GP quickly cut him short and replied that they are not going down that road. That afternoon i got a phone call to go for another CT scan with DYE to take a closer look. 

  • Hi, I am a 57 year old lady and my journey started 12 weeks ago, I went to my doctor with an embarrassing bowel problem, she was a new GP and seemed concerned so she referred me for a CT scan with dye on a Sunday, I came away just knowing that I would have to wait a while for results. On Friday of that week my normal GP knocked on my door, I thought he was here to tell me something about my mum as she had recently had to go into a care home, he quickly stopped me while I was asking and asked if he could come in and sit down with me. I have suffered with lots of health problems over the last 10 years so i wasn't particularly concerned initially, however he then said "I'm here about your scan results, they have found a 2cm growth on your Pancreas", I felt like I was moved to another universe and looked at my other half who had tears in his eyes, my GP asked if I had any questions, I couldn't think so my other half asked him if it could be benign, the GP quickly cut him short and replied that they are not going down that road. That afternoon i got a phone call to go for another CT scan with DYE to take a closer look at my Pancreas, the next week my GP phoned me and said that they had found another lump that was 5mm. I then got a letter to go and see the gastro doctor at my local hospital, well it was a waste of time as i still didn't have a diagnosis, I then get prescribed Creon tablets by a nurse in that clinic, still no answers. All I needed to know was is it cancerous or not? (Hope your still with me and I'm not boring you)? 32 weeks later I had an appointment for a PET scan at a different hospital, i starved myself all night and just as I was leaving they phoned to cancel as the scanner had broken, (so another week wait) before i went for this scan I got an appointment at the Royal Liverpool to go for a tube down the throat to get a biopsy, I thought great ill get some answers now , but no! my biopsy was sent to London so another week of waiting anxiously. out of the blue a senior nurse from Liverpool rang to make an appointment for me to see the surgeon next week and asked if my local hospital had rang me with results, I said "no I'm still in limbo" , the next day i decided to ring them myself, however nobody is available until next Monday, (I am now going around the bend with frustration and anxiety) I know that Pancreatic cancer can kill really quickly, my other half and my children and friends are also going out of their minds with worry , so my eldest daughter rang my local hospital and told them that nobody is giving us any answers, this did the trick and I got a phone call of a different specialist who confirmed that it is cancer and there are now 3 lesions, it has been caught really early so it's good news but i will be having an operation next week, could be keyhole! So this is where i am currently at, oh also this type of cancer "Pets" Pancreatic Neuroendocrine cancer is rare, however now find out that my brother who has had cancer for five years has exactly the same cancer in his lungs, what are the chances of both sibling's having it? ( update after Wednesday) 9 weeks of waiting and finally I am getting somewhere!