Gastric Carcinoid

In June of 2006, my family doctor referred me to an internist because of left upper quadrant discomfort that I had been experiencing for many years, intermittently. I had not pursued the investigation due to recurrent Baker’s Cysts in my knees during which I was forced to leave my employment of many, many years, since I could not walk properly.

Firstly, I should tell you that I have pernicious anaemia and hypothyroidism which figures prominently into my problem I was sent to Dr. X for upper and lower scopes at which time two NETS were discovered in the cardia of the stomach and multiple small ones in the antrum. The two larger ones in the upper part were removed and biopsied positively for NETS.

Dr. X was ready to do a partial gastrectomy to see if this helped and if need be a total gastrectomy. He also wanted to repeat the gastroscopy to make sure he hadn’t missed anything, as he was surprised at the outcome. This was done two weeks after the first one and nothing further was found. But at that time, I had a talk with him saying that I felt a gastrectomy was really drastic and asked what the alternatives were. On my return visit after the scope, I asked that he give me a referral to London and he called while I was still in his office. I also asked my Family Dr. to do the same. Around the same time I had been reading the www.carcinoid.org website and contacted X who urged me to get to London.

In August, X contacted me and I had my scans in October and returned to see Dr. X in November. It was decided to have yearly scopes and scans and remove any noids that were large enough to excise.

In January, I had a scope at SBH and it was completely negative. Last week, I was in X for my O-scan and am to return in Dec for the results.

My family Dr. has been very knowledgeable and helpful. She actually has a family member with noids. For those interested and living in the Scarborough area, she has given me permission to publish her name. It is Dr. Donna Vlahos and she will see noids patients who intend to be her patients, but by referral only.

I find that I have to take regular digestive enzymes to help with digestion. I have also recently removed wheat from my diet and this has helped with the gas and bloating, plus my joints are better than they have been in years.

It is now 2009 and after a few visits to London, there have been no recurrences of my gastric carcinoid tumours. However, in January 2009, on a routine chest x-ray, an area in my right upper lobe was seen and subsequently, a CT of the thorax was performed. It was decided that I return the end of April to see if there were any changes in the area. This time I had a complete body CT with contrast and again the area was seen, but without change.

I again trekked to London three weeks later for the 120 minute scanathon and it was said that this may be a mould rather than a carcinoid and that it should be rechecked in 9 months here at home and again in London in about 12 months or whenever the weather allowed me to make the trip. So for now I am playing the waiting game.

Also on these scans, bilateral ovarian cysts were seen which had been present 4 years ago. There was no significant change in size or configuration. These will be investigated this summer.

Additionally, my husband had an appendiceal carcinoid, discovered by accident during a gall bladder surgery. It was excised many, many years ago and to our knowledge there has been no recurrence. We call ourselves "the carcinoid kids".

My hubby who turned 88 in 2009 has undergone a difficult winter. In the process of trying to find out what his problem was, I asked that a CGA and 5HIIA be done. Both returned within normal range so they have concluded that his problems are not carcinoid related.

I feel very fortunate so far in that my situation is not as drastic as some and my heart goes out to all those who are suffering.

Dawn Hicks