Lynn, age 32 when diagnosed with a type of neuroendocrine cancer of the tail of the pancreas

I'm Female aged 32 at diagnosis of Pancreatic NET March 2006 although the NET part wasn't diagnosed until end April 06.

I had virtually no symptoms initially although looking back I had taken 20 days off work - term time, mostly with tummy upsets and I know I was ill during holiday times too that is unaccounted for. In the beginning of December 2005 I had an upset stomach that then left a collitis for a week or 2, I'm unsure if it was related. Over Xmas 2005 I also had another upset tummy, just bloating and bit of diarrhoea, then in beginning of January I had a couple of glasses of red wine and some cheese and that night I had bad cramping pains in the upper abdomen although not particularly to one side, it helped to hold pressure onto it but it was a crippling pain that wouldnt allow me to stand straight and wasnt relieved by having gaviscon or nurofen. I was unable to get dressed to go to our out of hours service and the car journey was a very tender ride. The Doctor that met me felt around my abdomen area and there was no obvious area of particular pain (although he did not ask me to inhale before applying pressure in any area). He sent me home with a jab of diamorphine (possibly can't quite remember) and some gaviscon saying it was indigestion.

The following day I was pain free but at night after eating a main meal the pain returned. In the morning my GP asked me to inhale and pressed on my gallbladder area and I jumped in pain. He thought it was the gallbladder and prescribed me pain relief and asked me to steer clear of fatty rich foods.

I was pain free until March when I had an ultrasound of the gallbladder which showed a shadow on the pancreas, I was phoned a day or 2 after to come in for a CT scan. The follwing day I was invited into meet the consultant, he explained what he had found and that it was a tumour 10x7cm on the tail of the pancreas with possible spread to liver (small spot on CT scan). He met with the consultant surgeon the following week and I was brought in for a chat with him to explain that they would operate and what he planned to do during the operation. (Before that an Upper GI nurse came to the house to visit, to explain what the surgeon planned to do and to answer any questions and organise vaccinations for me, she was a god send and I drew great strength from her confidence). I then had a biopsy take from the tumour with CT scan. The results showed it was cancer but couldn't determine type. All this happened in space of a few weeks. I needed some time then between vaccination and splenectomy, so I had to wait around 3- 4 weeks before the operation.

On 26 April I had distal pancreatectomy and splenectomy, The surgeon also removed my gallbladder and scanned the liver closey and couldn't find or feel anything there. The surgery was a success and the tumour was enclosed within itself with no trace in any surrounding tissue or lymph nodes. I had to wait approx 10 days for these results and that's when I found out it was a Neuroendocrine tumour. I was told it produced a growth hormone. During my stay in hospital the upper GI nurse regularly popped in which brightened up my day and she sat with my husband during the 7 hour operation and I know he was hugely grateful for her support that day and the days following.

My surgery left me with Irritable Bowel type Symptoms and I take Creon 10000 and Colofac along with Merbentyl Syrup when needed. I also take Penicillin daily.

I returned to work 6 months after surgery and was supported by telephone from the Uppper GI nurses, and my own GP practice. My GI nurses were a lifeline when I was having lots of problems with severe IBS pains as I felt very much alone with these.

I had no predisposed condition that indicated problems with the pancreas, I was underweight for my height (long and lean) and lived a fairly healthy lifestyle (2 young children to chase after). I have since been diagnosed with Breast cancer 1 year later, (Follow up octreotide and CT scans to watch liver showed spots on breast and one lymph node in armpit... biopsy and mammogram then showed these were early stage but invasive Her2 + breast cancer. I'm now under the breast cancer care team although still see my pancreatic surgeon every 3/4 months - Liver spots ; 1 remains unchanged and the other has gone). Currently undergoing FEC chemotherapy, mastectomy planned at the end and tamoxifen was mentioned as follow on to this.

I have just had blood taken for genetic testing, it appears that my mother's mother died from lung cancer in her early 40's along with her 2 brothers also early deaths (1 lung cancer, 1 other type cancer). The genetic counsellor I met said there was a chance that the lung cancer might have been a NET although if that was the case they would expect my mother to have developed cancer and she hasn't (now aged 55). I am concerned that my younger siblings or my children may develop NETs and am keen that they are screened if possible in the future.

As for a time when I started to feel unwell there wasnt really a particular time that it clicked in my head that there was a problem. Because I work with young children I just put it down to having bad luck and catching everything that came around! It wasnt until I applied for my present job and my line manager filled in my reference she had to write how many days off I had in a year and it was 20 days, I was aware that 5 days of that was for scarletina but I knew I had been ill for a week at Easter and days here and there in the long summer holidays. By upset tummy I mean feeling bloated and off my food and sometimes with diarrhoea. I also took a lot of Rennies - I went through a packet a week! I dont know if that was to do with it or not! Likewise I could say I also took a lot of nurofen for headaches on an almost daily basis but again I put it down to stress and lighting at work (?).