Hi, 

Sorry to read your post, hopefully by now you have more information about your condition. My husband also has a neuro endocriine tumour, I have found the NET foundation site very useful. 

Good luck with your treatment

Hi. About to have my 4th lanreotide injection. Still hunting the primary tumour and planning surgery. My biggest worry is `life expectancy`. No website seems to give that info. I don`t worry for myself, but for those I may leave behind eventually.

Hi Peter

It can be difficult to be very specific about life expectancy with NETs.  However, if you are able to find out the exact type of NET it may be a bit easier.  You can find out more about NETs here .  The only one that we have information about on survival on the website is carcinoid tumour, as this is one of the more common types and therefore there are larger numbers of people with it to collect statistics on.

Your doctors may be able to give you an idea of what type it is from the pathology (the samples looked at in the laboratory when you were diagnosed) and whether or not it is producing any hormones and releasing these into the blood stream.  But they might also have to find out where it started to be completely clear.

I hope this is of some help.

Martin

Hi pete,

I hope the below gives you some answers and helps you. Before you read to let you know im on some great treatment at Sheffield and im living with my cancer and enjoying life. I am now cancer Research UK Ambassador. Great job helping others. I could not have been much worse when they located mine but the people in the NHS and hospitals are amazing. All the very best Pete. Andy xx

The below story is my ten years in full. This should hopefully explain the highs and lows during this time. This has been used by my local MP who has taken it forward to the health department to hopefully obtain a substantive response as to why the drug has been removed from the NICE list?

My story started approximately ten years ago, whereby I was diagnosed with a Neuroendocrine Tumour to the pancreas.

I was at my Doctors surgery and I noticed that they were providing well man checks for the over 40s Male. I decided to take these basic checks. After a couple of weeks the initial blood test that I had given came back with abnormalities.
After further checks I was sent to the local hospital for an ultrasound check. Not long after having this check within minutes I was given a CT scan that resulted in a large mass being located on my ride hand side of my upper body that was the size of a football. I had felt no pain.
It was diagnosed as a Neuroendocrine Tumour to my pancreas that must had been secreted there for years and years.
The surgeons moved quickly and remarkably it was supposedly all removed and I was given the all clear. I lost my spleen and tail end of my pancreas during surgery as well as the large tumour.
This remained the same for approximately seven years when I returned to the Doctors for an unrelated matter, Due to my mental state at that time the Doctor recommended me for another CT scan that picked up that tumors had returned to my Liver and pancreas that were in operable.
I was subsequently allocated a Specialist Professor. He took care of me for the next four years providing routine treatments in order to control the tumors. This worked for about five years whereby I was able to live a normal life with hospital visits whilst still living with my cancer.
Following this period I was allocated another Specialist Professor who continued the treatments He also used other treatments in order to control the tumours. Also during this time I was provided with a Nuclear scan that was supposed to light up the areas affected by the tumors. A number of limited areas showed up on the scan. I was provided with Everolimus, but due to my low immune system I contracted Encephalitis and nearly died as a result . I was seriously ill and at this time I had to retire from my job as a Detective Sergeant serving 26 years within the police.
During this time my family were very worried and struggled to cope and became increasingly worried and aware that my treatments were becoming limited and that my

options were running out as my calcium had also started to rise as the tumors sought more calcium from my body and my levels started to increase alarmingly.
This continued for approximately two years whereby I was in and out of hospital on a regular basis. Whilst in hospital I was provided with fluids and other medications that did

not succeed at lowering my calcium levels that continued to rise. The Doctors became worried because nothing would lower my calcium levels,
It was also starting to take its control over Myself.
I began to lose my speech and ability to hold a conversation. I also could hardly walk a few feet as my legs were becoming increasingly weak, I was more or less bed bound at this time. It also made me increasingly susceptible to loud noises and I became withdrawn in Myself.

It was also very hard for my family who had to increasingly get used to my regular mood swings. It was also impossible for me to button my shirt or my trousers due to my deteriorating health. During this time I also suffered heavy falls in hospital and at home leaving me Badly bruised and sore. The Specialist staff continued to give me treatments that did not work and allowed my calcium to become at dangerous levels threatening my bone marrow and other parts of the body.
By this time my normal treatment options for reducing calcium were ending and showed no signs of any improvement and I continued my very poor health remaining weak and withdrawn. About six months to nine months ago, I was being considered for palliative care at home such was my state of health.
The route of all my problems was my calcium levels being so high and were affecting my basic bodily functions.
At this point Professor X recommended me to Sheffield to speak with Doctor Y who was performing a relatively new treatment that involved nuclear medicine that was non evasive and injected into my arms. It was clear to the Professor that one of the tumors appeared to stand out and was requesting the extra calcium to enter the blood stream. An earlier nuclear scan was provided to Dr Y along with my medical records. The scan showed up limited areas where I had been effected.
Despite my very poor health I was accepted for the treatment by Dr Y
In October 2016, and had my first treatment staying overnight at the hospital before leaving the next day.
Nothing really happened for the next week apart from me being tired but I suffered no real side effects.
Within a week and without any warning I started to feel subtle changes and the benefits of the treatment.
It was life changing because all of a sudden I was able to join in conversations and my co ordination became back allowing me to eventually walk five miles. Walking my Golden Retriever dog. The change was unbelievable and people started to comment on how well and coordinated I had become. My memory is becoming sharper as I am able to recognize names and faces again. I also more tolerant with family and friends. I can now dress Myself and walk and run in a straight line. It’s incredible how this has become true after only one treatment. My family and Myself have recognized a massive change in my overall health and the fact that they are able to perform less tasks on my behalf. I am now also able to get up early in the morning and occupy Myself rather than staying

in bed to lunchtime or late afternoon. The health benefits have been terrific and unbelievable. I feel like person reborn and given another chance in life. Before I always used to think how long I have got and when am I going to die ? Now these thoughts have gone and I intend to live my life to the full with the help of Dr Y whom took that chance with me and that has handsomely paid off with added bonuses to my health. Only recently, I am able to compile this report to you as it was impossible previously.

I am now so enthusiastic about life and enjoying it with my family. Life is now a joy a

s I communicate on face book with my many friends and tell my story to give help to others with the message never to give up. I am sure that this treatment will provide others with the unbelievable health benefits that I have achieved through the treatment.”

Never give up Pete there are treatments out there and some coming through.It was classed as rare but now it is named Less Common. I mentioned the drug Everolimus in my story. As you will read. IT WAS NO GOOD FOR ME BUT FOR OTHERS IT HAS BEEN VERY POSITIVE :). It is easy for me to say and you will probably not do it. However, try as much as possible to keep calm as a neuroendocrine tumours react to hormones in the body so being angry or worrying is not doing your body any good at this time. xx Andy.

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Read more at www.cancerresearchuk.org/.../my-ten-year-plus-story-that-will-hopefully-inspire-someone