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Interesting.
Turns out Audrey Hepburn died of an appendiceal tumor.
Much like mine.
Except hers had broken open and coated her intestines with tumor and mucus by the time they discovered it--i.e. she was already in an advanced stage of PMP by that time. They estimated that the tumor had silently been spreading throughout her abdomen for at least 5 years.
I had no idea. I thought she died of colon cancer. Apparently, until recently (and perhaps still?) appendiceal cancers were dealt with as colon cancers, and reported as such for public health statistical purposes, rather than as a separate phenomenon.
I am gradually learning that, despite the fact that my appendiceal tumor was technically "benign" (because it isn't aggressive in the same way that an adenocarcinoma would be--it will not invade lymph nodes or bone, etc.), it should still, medically, be treated as a malignancy. It could still kill me, and it could actually kill me quickly, if the tide turned that way. Then again, my appendectomy might have been curative, and I might never experience a single further complication from it.
I'm not sure if Hepburn's tumor was technically malignant or benign, i.e. I'm not sure if it started as a mucinous cystadenoma (like mine) or a mucinous cystadenocarcinoma, or perhaps a signet ring cell carcinoma (particularly aggressive). But it wasn't invasive cancer that killed her, it was complications from PMP, as the tumor cells choked off her small intestine and left her unable to absorb nutrition.
Cross your fingers for me, and hope that I have somehow managed to dodge this bullet.
But if not...OK, bring on life and bring on death. They are never separate anyway. All I can do is to grab aggressively onto whatever life I have before me, whether it's 5 years or 55. It's scary, though. I'm sure I'll never stop getting scared about it from time to time, even if my CT scans stay clear for years and years. It's hard not to, it's such a huge tangle of unknowns.
I have been investigating the PMP Awareness website, and have also joined the PMP support group and posted an intro on their discussion list. I have heard back from a handful of people from the PNW area who have dealt with this cluster of illnesses. It is surprisingly comforting. Some of them are advising me to continue following a cautious approach regarding potential treatments; and some of them are saying, "Run, don't walk, to the nearest PMP expert, and get a second opinion about your CT scan results!" Apparently there are a number of people who have died because their doctors were too inexperiened to detect small tumors on a CT scan, and therefore mismanaged the case.
Turns out Audrey Hepburn died of an appendiceal tumor.
Much like mine.
Except hers had broken open and coated her intestines with tumor and mucus by the time they discovered it--i.e. she was already in an advanced stage of PMP by that time. They estimated that the tumor had silently been spreading throughout her abdomen for at least 5 years.
I had no idea. I thought she died of colon cancer. Apparently, until recently (and perhaps still?) appendiceal cancers were dealt with as colon cancers, and reported as such for public health statistical purposes, rather than as a separate phenomenon.
I am gradually learning that, despite the fact that my appendiceal tumor was technically "benign" (because it isn't aggressive in the same way that an adenocarcinoma would be--it will not invade lymph nodes or bone, etc.), it should still, medically, be treated as a malignancy. It could still kill me, and it could actually kill me quickly, if the tide turned that way. Then again, my appendectomy might have been curative, and I might never experience a single further complication from it.
I'm not sure if Hepburn's tumor was technically malignant or benign, i.e. I'm not sure if it started as a mucinous cystadenoma (like mine) or a mucinous cystadenocarcinoma, or perhaps a signet ring cell carcinoma (particularly aggressive). But it wasn't invasive cancer that killed her, it was complications from PMP, as the tumor cells choked off her small intestine and left her unable to absorb nutrition.
Cross your fingers for me, and hope that I have somehow managed to dodge this bullet.
But if not...OK, bring on life and bring on death. They are never separate anyway. All I can do is to grab aggressively onto whatever life I have before me, whether it's 5 years or 55. It's scary, though. I'm sure I'll never stop getting scared about it from time to time, even if my CT scans stay clear for years and years. It's hard not to, it's such a huge tangle of unknowns.
I have been investigating the PMP Awareness website, and have also joined the PMP support group and posted an intro on their discussion list. I have heard back from a handful of people from the PNW area who have dealt with this cluster of illnesses. It is surprisingly comforting. Some of them are advising me to continue following a cautious approach regarding potential treatments; and some of them are saying, "Run, don't walk, to the nearest PMP expert, and get a second opinion about your CT scan results!" Apparently there are a number of people who have died because their doctors were too inexperiened to detect small tumors on a CT scan, and therefore mismanaged the case.
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