adenocarcinoma of the appendix

amel38 · Posted: Sat Sep 10, 2005 1:39 am Post subject: adenocarcinoma of the appendix

My husband just found out he had an adenocarcinoma of the appendix after having emergency surgery to remove the appendix. It was perforated, we understand that this type of cancer is very rare and at this time very confused. He had had an additonal cat scan and is scheduled for a pet scan this coming week to look at a site in his liver that the doctor thinks is non-malignant but want to take a closer look. the other organs look fine. We have read about the Sugarbaker method but we live in Denver Colorado where we have been told there is not many oncologists with experience with this type of surgery. Has anyone had this type of surgery in this locaion, if so where, what were the results, should we go to any of the cancer sites that specialize in this type of surgery? Any information would be greatly appreciated, especially from someone who has had this surgery. The more we read, the more we become confused. Crying or Very sad

pattie miller · New User Joined: 03 Jan 2006 Posts: 5

how is your husband doing?

have you found any answers to your questions so far?

there are a couple of excellent sites to go to. one is PMP awareness which is a new site as of dec 2005. it has alot of imformation. also, there is a forum called bellybuttons (named after the idea that many no longer have a bellybutton after surgery)

the most important thing i can tell you is to see a specialist. even if you have found an oncologist in the pasdt couple of months, unless it is one of the specialist, i urge to see one of the doctors listed on the pmp awareness site.

as far as living in denver, there are organizations that help fly patients to their needed surgeons. initally you can contact the doctors office by phone or email. you can send copies of reports and CT films as well to be reviewed prior to making the decision to go to a partticular specialist.

PMP is a rare disease and it hides itslef well. my friends CT scans looked good with the exception of a small spot in the lower right quadrant. his markers were within normal range. however, when the specialist opened him, tumor was evertwhere. it did not show on the CT as it was "glazed" on his organs and that thin of a layer wasnt noted.

the best thing you can do is educate yourself. my friend poured over info and articles (you can cut to the chase and start with the articles listed on bellybuttons site) if he had followed the surgeons advice who removed his appendix, he never would have been properly diagnosed at this time. the surgeon assured my friend he looked all around while removing his appendix and only found a small hernia on the right and some diverticili on the left. the truth is, the PMP mucus was everywhere but the surgeon cant identify something if he doesnt know what he is looking at.

good luck to youl please post an update when you have a chance.

lesleyjames

My husband was diagnosed over 2 weeks ago with mucinous adencarcimo of the appendix. He had symptons similar to a ruptured appendix but after a colonoscopy they found a mass that had formed in his colon and was blocking his bowel. Everyone with this cancer seems to have the same story and yes, it's very frustrating to know what the 'right' treatment is. My husband had 6 out of 11 lymph nodes involved and we are planning to have a 6 month stint of chemo. probably followed by another surgery and the heated chemo. with Dr. Sugarbaker in Washington D.C. We live in Los Angeles and have been told the surgery performed by Dr. Sugarbaker will probably not be covered by insurance. The cost could be between $15,000 and $30,000. My husband can not bear the thought of another surgery. If anyone has any helpful info. or if we can be of any help please contact us.

pattie miller · New User Joined: 03 Jan 2006 Posts: 5

my friend had this surgery. i went with him to his 3 "second" opinions as well as his testing. i then stayed with him st agnes in baltmore when he had surgery with dr sardi . he was in the hospital for 8 days.

i am at work right now and cant reply at length right now but would be more than happy to help where i can. you can wirte questions here or write to my email address. it is pattie1102@comcast.net

pattie miller · New User Joined: 03 Jan 2006 Posts: 5

by the way, the belly button site will more than welcome you. many have been where you are now. they have had the "no insurance issue" and they know how to beat it. they know how to get free flight to the surgery. they know where to stay for free at some of the places (baltimore for sure) or where to stay cheaply.

sign on, tell your story and start with your basic questions. i promise you will find answers and friends and most of all, support there.

i too will be happy to be in contact with you. at the very least, let me know how your husband is doing.

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