Sorry if this post rambles... I have a lot to get off my chest...
I've had a little bump underneath my left ear for a year-ish. No idea how long it had been there, as it's not that big, nor is it painful. But it's one of those things you certainly can't "un-notice" (nor stop futzing with) once you find it. I saw my doc soon afterwards and he thought it was just a swollen lymph node. I should call him again if it got visibly larger or started to hurt. Fair enough.
About a month ago I got a physical and mentioned the lump again. He thought it was nothing, but decided to send me to an ENT (Ear, Nose and Throat Doc... aka Otolarynologist), "just to be safe."
Well, after the ENT finished his "doctor reflex" stuff (looking down my throat, in my ears, etc.) he massaged the lump for about five seconds and proclaimed "Parotid Tumor." My reply: "Pa-what? Tumor?"
The Parotid gland is the name for the large salivary gland on each side of your face, just below your ear and extending down about 6cm. Occasionally, it develops a tumor. Such tumors are rare-ish (3-5 per year per 100,000 people per year, usually in people much older than I am), which is why my primary doc didn't catch it. (I'm not mad at him or anything about it.)
80% are benign, the other 20%... well, aren't. (And, for somebody as young as I am (35), the long-term survival rates kind of suck, as metastasis rates apparently don't go down over time, so the younger you are, the more likely it is something else won't kill you first.) In all cases, the only treatment is surgery, and it has to come out no matter what, as even a benign tumor can turn malignant over time. (And even after removal, even benign tumors can re-occur, which means a 2nd operation and some delightful radiation.)
20% doesn't sound that bad, until it's YOUR head the thing is in.
The rub? I won't have any idea what kind of tumor it is until the damn thing is Out. Of. My. Head. A biopsy can give hints, but aren't definitive, so I refused one, as it doesn't change the treatment plan at all. (I'm a big fan of refusing tests when the results don't have any possibility of changing the mind of the doctor or myself.) The surgery to remove the tumor is not major (as in, no really nasty scars or blood transfusions), but it is tedious (3-4 hours) because the nerve that runs your entire face (from the forehead to the chin) goes right smack through the middle of the gland. If the surgeon rushes things, I could look like a stroke victim for the rest of my life. (Even if the surgeon works carefully, common side effects include numbness of the ear, and possibly "free Botox" of the forehead or paralyzed eyelids for 6-12 months.)
The thing that has infuriated me most about the whole process is how long it is all taking. I've been able to push things along by bugging the hell out of every office involved to get things scheduled as soon as humanly possible. My surgery is scheduled for my birthday, 8/27 (or 27/8 for you European types... , about five weeks after the preliminary diagnosis. (And I've read of plenty of people who can't get it scheduled for months...) If I'd waited for the first dates I'd been offered, it would have been a week until my CT scan, another week to follow-up and confirm my diagnosis, another three weeks for the opinion from the 2nd surgeon, and who knows how long until my surgery date.
This probably sounds mean (and it's not intended to be), but if I was a woman and I had a lump in my breast, it wouldn't take two damn weeks to get a scan and get it read, even though the malignancy statistics are about the same, and the mortality stats (if it's malignant) are worse for salivary tumors.
I'm confident in the surgeon I've selected, as he's done well over a thousand of these. Which is good, as it takes a lot of practice to work around the nerves. I'm lucky he's only a half hour drive from my house; plenty of people drive across multiple states to find an experienced surgeon. (The first ENT I went to had done "a couple hundred" over his 25 years, which is actually pretty decent, if not as good as the doc I went with. But the 2nd doc's plan involves less cosmetic disfigurement, and a MUCH smaller incision.) While he's officially an ENT, (which ostensibly covers sinuses, allergies, ear infections, tonsils, etc.) he outright refused to correct my deviated septum, as he hasn't done one of those since he was a resident decades ago. All he does is lower head and neck tumors and cancers. Period. (He will be bringing in another surgeon to work on my septum at the same time, so I don't have to have another operation later.)
There's an online support group for such tumors, and they've been a little useful (they insisted I not schedule surgery until my 2nd opinion, and I'm VERY glad I followed that advice), but they don't seem like my kind of crowd when it comes to emotional support. While I feel calm-ish about it, and I don't look frazzled, and I'm sleeping ok, I can't get my mind off of it.
I don't look or feel sick, and there's a 4 out of 5 chance it's nothing more than a minor inconvenience. (It's one night in the hospital, and recovery time from the operation is all of a week, tops. The nose surgery actually has longer and more painful recovery.) I'm very lucky in that I have excellent insurance, and can afford the $3k or so in out-of-pocket costs without more than minor cringing. But dammit... I cannot stop thinking about it. I'm nearly useless at work; e-mails that would ordinarily take me a half hour to put together take a whole freaking day. Problems I'd usually be able to solve in five minutes end up getting fixed by somebody else. I'm normally really good at my job, and right now I'm certainly not.
I'd like to ask my boss (who is excellent) for the next couple weeks off (plus 1-2 more weeks after the surgery), but I'm afraid I'll just look like a worry-warting wimp. (He just went through real cancer treatment last year; he was out for about six months and needed every day of it. Luckily my employer has very generous 100% paid sick leave: "Don't be sick more than six months out of a year." And it used to be "Don't be sick more than one year out of two.")
All I need to do is hold it together for another couple of weeks, and then I can feel relieved (or deal with it if the news turns out to be bad), but I have no idea what to do in the meantime.
If you got this far... thanks for reading. Any advice welcome.
I've had a little bump underneath my left ear for a year-ish. No idea how long it had been there, as it's not that big, nor is it painful. But it's one of those things you certainly can't "un-notice" (nor stop futzing with) once you find it. I saw my doc soon afterwards and he thought it was just a swollen lymph node. I should call him again if it got visibly larger or started to hurt. Fair enough.
About a month ago I got a physical and mentioned the lump again. He thought it was nothing, but decided to send me to an ENT (Ear, Nose and Throat Doc... aka Otolarynologist), "just to be safe."
Well, after the ENT finished his "doctor reflex" stuff (looking down my throat, in my ears, etc.) he massaged the lump for about five seconds and proclaimed "Parotid Tumor." My reply: "Pa-what? Tumor?"
The Parotid gland is the name for the large salivary gland on each side of your face, just below your ear and extending down about 6cm. Occasionally, it develops a tumor. Such tumors are rare-ish (3-5 per year per 100,000 people per year, usually in people much older than I am), which is why my primary doc didn't catch it. (I'm not mad at him or anything about it.)
80% are benign, the other 20%... well, aren't. (And, for somebody as young as I am (35), the long-term survival rates kind of suck, as metastasis rates apparently don't go down over time, so the younger you are, the more likely it is something else won't kill you first.) In all cases, the only treatment is surgery, and it has to come out no matter what, as even a benign tumor can turn malignant over time. (And even after removal, even benign tumors can re-occur, which means a 2nd operation and some delightful radiation.)
20% doesn't sound that bad, until it's YOUR head the thing is in.
The rub? I won't have any idea what kind of tumor it is until the damn thing is Out. Of. My. Head. A biopsy can give hints, but aren't definitive, so I refused one, as it doesn't change the treatment plan at all. (I'm a big fan of refusing tests when the results don't have any possibility of changing the mind of the doctor or myself.) The surgery to remove the tumor is not major (as in, no really nasty scars or blood transfusions), but it is tedious (3-4 hours) because the nerve that runs your entire face (from the forehead to the chin) goes right smack through the middle of the gland. If the surgeon rushes things, I could look like a stroke victim for the rest of my life. (Even if the surgeon works carefully, common side effects include numbness of the ear, and possibly "free Botox" of the forehead or paralyzed eyelids for 6-12 months.)
The thing that has infuriated me most about the whole process is how long it is all taking. I've been able to push things along by bugging the hell out of every office involved to get things scheduled as soon as humanly possible. My surgery is scheduled for my birthday, 8/27 (or 27/8 for you European types... , about five weeks after the preliminary diagnosis. (And I've read of plenty of people who can't get it scheduled for months...) If I'd waited for the first dates I'd been offered, it would have been a week until my CT scan, another week to follow-up and confirm my diagnosis, another three weeks for the opinion from the 2nd surgeon, and who knows how long until my surgery date.
This probably sounds mean (and it's not intended to be), but if I was a woman and I had a lump in my breast, it wouldn't take two damn weeks to get a scan and get it read, even though the malignancy statistics are about the same, and the mortality stats (if it's malignant) are worse for salivary tumors.
I'm confident in the surgeon I've selected, as he's done well over a thousand of these. Which is good, as it takes a lot of practice to work around the nerves. I'm lucky he's only a half hour drive from my house; plenty of people drive across multiple states to find an experienced surgeon. (The first ENT I went to had done "a couple hundred" over his 25 years, which is actually pretty decent, if not as good as the doc I went with. But the 2nd doc's plan involves less cosmetic disfigurement, and a MUCH smaller incision.) While he's officially an ENT, (which ostensibly covers sinuses, allergies, ear infections, tonsils, etc.) he outright refused to correct my deviated septum, as he hasn't done one of those since he was a resident decades ago. All he does is lower head and neck tumors and cancers. Period. (He will be bringing in another surgeon to work on my septum at the same time, so I don't have to have another operation later.)
There's an online support group for such tumors, and they've been a little useful (they insisted I not schedule surgery until my 2nd opinion, and I'm VERY glad I followed that advice), but they don't seem like my kind of crowd when it comes to emotional support. While I feel calm-ish about it, and I don't look frazzled, and I'm sleeping ok, I can't get my mind off of it.
I don't look or feel sick, and there's a 4 out of 5 chance it's nothing more than a minor inconvenience. (It's one night in the hospital, and recovery time from the operation is all of a week, tops. The nose surgery actually has longer and more painful recovery.) I'm very lucky in that I have excellent insurance, and can afford the $3k or so in out-of-pocket costs without more than minor cringing. But dammit... I cannot stop thinking about it. I'm nearly useless at work; e-mails that would ordinarily take me a half hour to put together take a whole freaking day. Problems I'd usually be able to solve in five minutes end up getting fixed by somebody else. I'm normally really good at my job, and right now I'm certainly not.
I'd like to ask my boss (who is excellent) for the next couple weeks off (plus 1-2 more weeks after the surgery), but I'm afraid I'll just look like a worry-warting wimp. (He just went through real cancer treatment last year; he was out for about six months and needed every day of it. Luckily my employer has very generous 100% paid sick leave: "Don't be sick more than six months out of a year." And it used to be "Don't be sick more than one year out of two.")
All I need to do is hold it together for another couple of weeks, and then I can feel relieved (or deal with it if the news turns out to be bad), but I have no idea what to do in the meantime.
If you got this far... thanks for reading. Any advice welcome.
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