The "C" Word SUCKS - my husband has a 12 inch incision on his belly and had 12 inches of small intestine removed last week - he had a blockage - the blockage was Carcinoid Cancer! They were able to remove all of it from the intestine but he has a mass on his lymph node which they were unable to remove because it is to close to an artery! Now we have to wait for the Oncology Dept at VA to call us for an appt to decide on what happens next. From everything I have read on the Internet - this type of cancer is very slow growing with a life expectancy of 5 - 20 years. The problem is that Bob has had this blockage going on for the past 3 years. I had told him to go to the Dr. everytime he had an attack but he wouldn't! I don't want anything to happen to him - I am scared and I want my Mom (she would know what to do) but since she passed away just about 1 year ago I am alone! I am so sad!
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Dear Lynn, I am a carcinoid survivor. I was diagnosed in 3/2006 and had surgery a month later. I read your post and my heart went out to you and your family! I remember what a shock that diagnosis was and how traumatic it was for me and my family. The good news is that carcinoid usually gives you some time to make good decisions about the care and management of your disease. I would recommend that you contact a carcinoid specialist...right away. Most doctors view this as a disease that doesn't warrant much attention, but research has shown that your husband's life can be extended for many years with the right treatment! Please visit http://www.carcinoid.org and find the list of recommended doctors. They are few and far between in our country, but are worth their weight in gold for carcinoid patients. I wish I had gone to them at the beginning of my journey. It would have saved a lot of worry and heartache! It sounds like your docs have done the right thing so far as the best thing is to get out as much as you can surgically, but what one doc thinks is "inoperable" is often not the case with the carcinoid specialists. The Neuroendocrine Tumor Clinic at Kenner, LA is well known for their ability to get to tumors that others won't touch. You'll find them on the list under Dr. Eugene Woltering. Take heart! There are all kinds of possibilities to give your hubby and you many happy years in the future! I would also suggest that you contact a carcinoid support group in your area! You can find a link to all the support groups in the US on the www.carcinoid.org site. Your local support group can be very helpful in finding doctors that are helpful in dealing with carcinoid as well as just being a good source of all kinds of information. Your hubby is going to be dealing mostly with healing from his surgery for the next months...abdominal surgery is not fun and requires time to heal! Lots of time! Though the pain dissipates slowly over the first weeks, it took me over a year to really start to feel good again. However, I would caution you that every carcinoid survivor is different...so no one set of guidelines fits everyone. Your best course of action now is to learn all you can about carcinoid and contact the experts! You will save your hubby and yourself lots of "miscues" and believe me most carcinoid patients have been down those wrong paths before they get the help they need. Feel free to contact me directly at diannaboomershine@yahoo.com if I can answer any questions for you.
Blessed be, Dianna Boomershine
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