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arguchikthe news is...well, as with most news it's mixed. i think i'm gonna make this friends only for now. (7/30/06: decided to make it public after all...)
i saw dr. mann, the surgical oncologist, today. he's the expert in the PNW on this condition called psuedomyxoma peritonei (PP). this condition is related to the condition i had in my appendix, called mucinous cystadenoma (MC). basically, with PP, the mucosal cells escape from someplace (in my case the appendix) and "seed" the abdominal cavity, developing into tumors that: a) produce tons of mucous, eventually filling the abdominal cavity with it; and b) twist around major organs and cause all kinds of problems. as he was describing the condition to me, i said, "it sounds kind of like endometriosis, only with mucosal cells." he looked a little surprised, thought about it for a minute, then said, "exactly right, that's a good analogy. i've never thought about it like that before." anyway, as of right now, i don't have PP. dr. mann looked at my pre-appendectomy CT scan and said it's completely clear. that's the good news.
the bad news is that i *wouldn't* have had PP prior to having the appendectomy. the worrisome aspect of the whole deal is that my appendix was perforated, which means some of these mucosal cells may have gotten out into my abdominal cavity, and could ultimately develop into PP, which is a very serious condition, potentially fatal. dr. mann said he has done surgery on patients in the advanced stages of this disease--like 18-20 hour operations in which he removed multiple organs and fished around in the entire abdominal cavity tracking down tumors. after surgery like that, a patient faces 6+ months of recovery time (no mention of what they do about the missing organs...presumably if they're vital organs they need to be transplanted). the problem is, the condition isn't painful, and the only symptoms patients notice, even in the advanced stages of the disease, are weight loss with distension of the abdomen--so it looks like they're gaining weight when they are actually losing weight.
the other part of the bad news is that both MC and PP are extremely rare. they have no data on what percentage of MC cases later develop into PP. all dr. mann could really tell me is that i definitely want to catch PP early, if it starts to develop. i have to stay on top of it.
my options are as follows, from least to most invasive:
1. yearly CT scans for the indefinite future. this is not optional, actually; he said it's the bare minimum that i should do.
2. exploratory laproscopic surgery to see if any mucinous tumors are starting to grow anywhere in my abdominal cavity. if so, he would obviously remove them, along with a sizable chunk of whatever healthy tissue they are attached to. whether he sees anything worrisome or not, he would infuse my abdominal cavity with chemotherapy drugs for 2 hours.
3. surgery to remove part of my colon, along with the exploratory "look see" and the chemotherapy procedure in #2.
i have some research to do, and some decisions to make. because dr. horvath, the surgeon who did the appendectomy, didn't like the look of my appendix, she already did a more radical appendectomy than they usually do. she stapled off a small part of my colon and removed it along with the appendix (usually they just tie off the appendix and remove it, leaving a small stub of it behind). the pathologist said that portion of my colon was completely healthy, so as of right now it looks like the disease was confined to my appendix. it's that small perforation of the appendix that's worrisome...
and yes, i know, i should have listened to![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
glaucon when he wanted me to go to the hospital the night before i actually did go. he was right. i was wrong. i might end up paying a heavy price for it.
unfortunately, i can't rectify that mistake now. and i have no idea what i should do. i'm still sort of reeling from the information, still in the "poor me" stage. i think i'm just going to indulge that for a little while, get it out of my system so i can think more clearly. i'm currently leaning *away* from option #3, and wavering between #1 and #2. the big question i'm grappling with right now is...if i go with #1, what if i have that CT scan in a year and i have the bad condition and it has already progressed really far? otoh, i'm leery of flooding my body with chemotherapy drugs that are, in and of themselves, carcinogenic, and might cause a whole host of other complications.
wouldn't you know...i've always been really healthy, so here i am facing my first major health problem, and of course it has to be something really rare.
and i feel...i guess "i want my mommy" about covers it. which is pathetic, because it reflects an irrational, somewhat primal desire or wish that my actual mother was/could be/would have been a "mommy" in that sense. but she never was that kind of person, even when she was still "all there."
i saw dr. mann, the surgical oncologist, today. he's the expert in the PNW on this condition called psuedomyxoma peritonei (PP). this condition is related to the condition i had in my appendix, called mucinous cystadenoma (MC). basically, with PP, the mucosal cells escape from someplace (in my case the appendix) and "seed" the abdominal cavity, developing into tumors that: a) produce tons of mucous, eventually filling the abdominal cavity with it; and b) twist around major organs and cause all kinds of problems. as he was describing the condition to me, i said, "it sounds kind of like endometriosis, only with mucosal cells." he looked a little surprised, thought about it for a minute, then said, "exactly right, that's a good analogy. i've never thought about it like that before." anyway, as of right now, i don't have PP. dr. mann looked at my pre-appendectomy CT scan and said it's completely clear. that's the good news.
the bad news is that i *wouldn't* have had PP prior to having the appendectomy. the worrisome aspect of the whole deal is that my appendix was perforated, which means some of these mucosal cells may have gotten out into my abdominal cavity, and could ultimately develop into PP, which is a very serious condition, potentially fatal. dr. mann said he has done surgery on patients in the advanced stages of this disease--like 18-20 hour operations in which he removed multiple organs and fished around in the entire abdominal cavity tracking down tumors. after surgery like that, a patient faces 6+ months of recovery time (no mention of what they do about the missing organs...presumably if they're vital organs they need to be transplanted). the problem is, the condition isn't painful, and the only symptoms patients notice, even in the advanced stages of the disease, are weight loss with distension of the abdomen--so it looks like they're gaining weight when they are actually losing weight.
the other part of the bad news is that both MC and PP are extremely rare. they have no data on what percentage of MC cases later develop into PP. all dr. mann could really tell me is that i definitely want to catch PP early, if it starts to develop. i have to stay on top of it.
my options are as follows, from least to most invasive:
1. yearly CT scans for the indefinite future. this is not optional, actually; he said it's the bare minimum that i should do.
2. exploratory laproscopic surgery to see if any mucinous tumors are starting to grow anywhere in my abdominal cavity. if so, he would obviously remove them, along with a sizable chunk of whatever healthy tissue they are attached to. whether he sees anything worrisome or not, he would infuse my abdominal cavity with chemotherapy drugs for 2 hours.
3. surgery to remove part of my colon, along with the exploratory "look see" and the chemotherapy procedure in #2.
i have some research to do, and some decisions to make. because dr. horvath, the surgeon who did the appendectomy, didn't like the look of my appendix, she already did a more radical appendectomy than they usually do. she stapled off a small part of my colon and removed it along with the appendix (usually they just tie off the appendix and remove it, leaving a small stub of it behind). the pathologist said that portion of my colon was completely healthy, so as of right now it looks like the disease was confined to my appendix. it's that small perforation of the appendix that's worrisome...
and yes, i know, i should have listened to
glaucon when he wanted me to go to the hospital the night before i actually did go. he was right. i was wrong. i might end up paying a heavy price for it.unfortunately, i can't rectify that mistake now. and i have no idea what i should do. i'm still sort of reeling from the information, still in the "poor me" stage. i think i'm just going to indulge that for a little while, get it out of my system so i can think more clearly. i'm currently leaning *away* from option #3, and wavering between #1 and #2. the big question i'm grappling with right now is...if i go with #1, what if i have that CT scan in a year and i have the bad condition and it has already progressed really far? otoh, i'm leery of flooding my body with chemotherapy drugs that are, in and of themselves, carcinogenic, and might cause a whole host of other complications.
wouldn't you know...i've always been really healthy, so here i am facing my first major health problem, and of course it has to be something really rare.
and i feel...i guess "i want my mommy" about covers it. which is pathetic, because it reflects an irrational, somewhat primal desire or wish that my actual mother was/could be/would have been a "mommy" in that sense. but she never was that kind of person, even when she was still "all there."
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Date: 2006-07-28 08:53 pm (UTC)hey if you feel like getting out tonite or tomorrow, there are the INB events; maraude tonite, party tomorrow. i'd love to see you, it's been a while :)
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Date: 2006-07-28 09:38 pm (UTC)no subject
Date: 2006-07-29 09:41 am (UTC)no subject
Date: 2006-07-29 01:56 pm (UTC)no subject
Date: 2006-07-30 03:21 pm (UTC)