Barbara Bell
My story started when I was 24 yrs old.
I was told that I had PCOS- Polycystic Ovarian Syndrome. At that time I didn't ask a lot of questions. Then when I reached 29 yrs old I had Cyst Adenomas on my ovaries which was verified by surgery and Pathology. I was fine for many years until 1997 when I started becoming abnormally fatigued and lost interest in my job. It was discovered that I had high normal Calcium levels for months before my Family Practitioner even mentioned it to me. I was sent to see an Endocrinologist who then established that I had what he thought was MEN2. He refused to follow me up so I got a referral to another Endocrinologist.
In 1998 I had Parathyroid and Thyroid surgery but still not Dx with MEN1. My fraternal twin sister had a routine chest X-Ray at that time and they discovered she had 1 spot on both her lungs. She had one of them biopsied and it was benign. I thought this was rather strange and suddenly decided that I should get checked out. I went back to my Endo and begged him to do a CT scan on my abdomen and chest. Low and behold, I had 'stuff' in my Pancreas. I was then seen by another Endo who did all the very rare blood work from the Research Papers on MEN1. This was conclusive for MEN1.
She moved to Toronto and I was referred again to a new Endo who just appeared to not be knowledgeable and did very little follow-up. After 2.5 yrs of deep dissatisfaction and frustration I managed to get a referral to my previous Endo who was now at Toronto General Hospital. Prior to that in year 2000 I had my left Adrenal gland and tumour removed.
I now commute to Toronto regularly to see 3 specialists- one is a Pancreatic surgeon and the other is an Endo/Oncologist at My. Sinai Hospital. I have a Respirologist and GI specialist here in Hamilton. I have been having regular CgA and 5HIAA done along with 25 other blood tests. My 5HIAA tests have always been normal but my CgA results have been elevated from the start.
I have 2 known NeuroEndocrine Tumours in my Pancreas -one being 1 cm already. I also have foregut problems and am dealing with Gastro-Intestinal Hyperplasia, GERD, growth in my stomach plus small bowel problems. There is no Dx of Carcinoid at this point. I also have a growth in the upper lobe of my Liver which is considered to be a possible Hemangioma. My Pathology Report showed it was benign after a Liver Biopsy was done in 2006. The CT scans show that I have growths on my Spleen, on top of my left kidney and now small growths in the middle lobe of my right lung. I have been experiencing ongoing problems with multiple periodic partial Bowel Obstructions- I have constant bloating and abnormal stools for the past year.
As I am a Caregiver for my husband I have not pushed to have my GI tract followed up. I have had 4 Endoscopies done now but no Colonoscopies. I have for 2 yrs in a row gone to the Carcinoid NeuroEndocrine conferences in the USA and both of these were invaluable. They increased my knowledge base greatly and I was very fortunate to have met and spoken with Dr. Stephen Marx of the National Institute of Health who is an expert when it comes to MEN. I also met other MEN1 people and this was very beneficial when it came to sharing our own stories and Treatment modalities.
The one phrase that I hear from all my Drs is that I am a very complicated case so I tell them that yes, this is so but let's just get on with the task and don't leave me stranded- thank you very much. What helps me through all this is that I am a retired RN and have a fairly good knowledge base of my own.
Hope this epistle is helpful.
July 27, 2009
I have been having CT scans done every 6 months, but no MRI's. I still go to see my Endo at TGH about every 6 months or more but she wants Dr X at Mt. Sinai Hospital to cover my other medical problems being caused by my MEN1 diagnosis. I have not seen Dr X since last fall. Since then I have been widowed quite suddenly and so have not been seeing any doctors. I now have mobility issues that are slowing me down.
I do have a chronic cough, which my Respirologist at the Firestone Clinic is ignoring. He says my lung issues are just asthma. My last two CT scans show nodules in the right lower lobe and a possible inflammatory process going on in the upper lobes of my lungs. I become quite 'winded' after just walking half a block and I cough and cough. I now cough so much that I regurgitate a little of my food after I eat. I have Oesophageal Reflux Disease, which is being treated long term with PPI's. As a result of taking PPI's long term, I now have GI Metaplasia plus a big lesion on my stomach wall. I have not had an endoscopy done for two years and am presently trying to get a referral to another GI doctor here in Hamilton.
My GP feels that I do have lung carcinoid cancer but my Respirologist is negating all of this despite my family history. I haven’t had any surgery to confirm these suspicions.
I have both foregut and midgut problems, none of which have been diagnosed. I have had many partial bowel obstructions and abnormal slow emptying of both the stomach and the bowel. I have chronic bloating, abdominal cramping and pain almost daily.
I am borderline diabetic due to all the lesions and NETs in my pancreas. The last CT scan showed two tumours on my liver- one of which was biopsied in 2006. The Radiologist felt it was possibly a haemangioma or just a `fatty liver`. The second lesion or tumour has not been dealt with at this point in time.
Ninety-nine percent of the specialists have no knowledge of this hereditary disease called MEN1. The only reliable doctor is Dr Stephen Marx at NIH in the United States. I haven’t found any knowledgeable doctor here in Canada who knows much about Multiple Endocrine Neoplasia Type 1 or MEN1 for short.
Sincerely, Barbara Bell