A lump in my neck, under the ear. Several weeks, a biopsy and an MRI later, my ENT doc tells me I have a paleomorphic adenoma, a benign tumor of the parotid (salivary) gland.
Mister ENT tells me its not a big deal, just something to keep an eye on. Call him for a checkup in six months.
However, after some gleanings on the web, I now know just enough to be really nervous:
some percentage of paleomorphic adenomas eventually turn malignant. The quoted percentages vary widely from as low as 2% to as high as 15% (!).
Several sites claim that it cannot be reliably determined whether an adenoma is benign or malignant unless the tissue is removed and examined.
Removing the tumor involves removing the entire parotid gland to prevent recurrance. No big deal in most cases, there’s planty of saliva to go around, BUT:
Removing the parotid gland involves a moderate to high risk of damaging the facial nerves, resulting in facial paralysis.
Seems like you are doing the right thing by researching the situation. Maybe a second/third opinion is in order???
BTW, when I was in nursing school on my OR rotation, I got to scrub in on a parotidectomy. Of course that was a hundred years ago, but I remember it being a very long and meticulous surgery.
Lots of dissection of nerves and vessels, etc.
Best of luck to you, hope it all turns out alright.
I tend to agree on the second opinion part - I’m somewhat wary of anything ending in “oma” (biologically speaking - I’m sure Oklahoma is a very nice place!). Here’s hoping all goes well for you.
Whilst I’m the last person on the planet to say"trust your doctor" having a healthy distrust of them myself I think you can do yourself more damage by having a little knowledge: a little knowledge = worry. By all means have a second opinion, but, what if you had a third, fourth and twentieth opinion? Would it change things much? Just something to think about?
On the damage to nerves etc: I recall just before having my wisdom teeth yanked out by injection and a pair of pliers (or whatever instrument it was, no knock out gas for me ;)), having to read and sign the disclaimer that some facial nerve damage may occur - scary stuff, but, out came the teeth and there was no problem.
My cousin has recently undergone a major operation on her lower jaw (for dental reasons)and she’ll have no feeling in her lower lip and chin for 6 months :eek: which she said is weird to say the least.
I suppose everything is a gamble: your lumpmay not turn into something nasty. If you have surgery,you may not suffer paralysis. At themoment you’re not dealing with something that is cancer.
This is distressing news. And it takes time to fully digest. Give yourself some time.
Second opinons are frequently helpful, but don’t fall into a situation where you are shopping around for an opinion that simply resonates with your views.
The prospect of cancer can send patients scuttling for the most aggressive approach possible. If it can be cut out, cut it out. If hypertoxic chemotherapy has a small chance of helping, bring it on. Other patients are either frightened by the prospect of intervention or more willing to live with some uncertainty given the risks of any intervention. Ultimately, the decision is often a value judgement. It’s a kind of Rorschach test that incorporates the patient’s trust in their physician’s judgment, the patient’s own understanding of the odds and percentages, the patient’s age and current health status, the patient’s fear of or comfort with the medical establishment, and a healthy dose of personal style.
I don’t know much specifically regarding parotid adenomas, but allow me to provide you with some general advice.
The facial nerve (nerve controlling facial expression for 1/2 of you face) does indeed pass right through the parotid. Before any surgery, I’d want to know what are the odds of nerve injury. And more importantly, how does your surgeon’s past performance stack up against the generally accepted numbers (while crucial to the descision making process, such info is hard to come by unless you know an insider in the medical profession–try to find an insider.)
Benign lesions often grow slowly and generally do not cause pain. A rapid change in the size of you tumor or the onset of pain should serve as red flags to you.
Often a diagnosis can be established by taking only a small piece of the tumor out (called incisicional biopsy). This carries less of a chance of damagind healthy tissue. The flipside, though is that it is possible to miss a small island of malignant cells in the context of a larger benign adenoma due to sampling error.
2-15% malignancy rate is low, particularly if this is a lifetime rate and not an annual rate (if it’s annual then 2% is still pretty good but 15% is a bit dicey)
Carodin, my reasons for getting a second opinion are a) pure caution – what if it really is malignant and my ENT didn’t catch it? No harm getting the same answer and being sure that what I have is what he and the radiologist really think I have and not something worse.
And b) I have misgivings about my ENT – the way he tossed this off as no big deal without giving me any more information about what the possible risks are and what to expect if its removed or not removed bothers me a great deal. Plus it took him eight days to get around to calling me with the test results from my MRI (after I became impatient on day 6 and called his office, I still didn’t get a return phone call for 2 days), when according to the radiology lab he had been given the results 5 days before. I know doctors can be this way, and maybe I’m being unrealistic, but considering that I was waiting to find out if I had cancer or not, I’d expect a little more consideration.
And it really does bother me that I wasn’t given more information from my ENT, especially when I read in this forum the experiences of others with a parotid adenoma – it seems as though by far most people are advised to have it removed as soon as possible:
Sounds like some pretty darned good reasons.
choosybeggar:
Your point is well taken – I must admit this is does sum up my reaction upon reading more about this type of tumor. But I’ll try very hard to withhold judgement until I talk to another doctor and can ruminate more on the situation.
Darned straight. If the surgeon isn’t forthcoming with this information, at least I can judge his/her reaction when I ask the question. I’d also want to know how many of these operations they’d performed (my reading tells me it takes 3-5 hours, which sounds like its not a simple procedure) and how often. Luckily I’m in the SF Bay area which I’m told has more than a few good surgical centers and a zillion specialists of every stripe, so if it comes to surgery I can hopefully do some shopping around.
On the plus side, from my reading the experiences of others who have had a parotidectomy, it seems that true facial paralysis as a side effect of surgery may be quite rare, although temporary paralysis (from weeks to a year or more) is not unheard of.
Just to follow up (although I don’t see that this thread has garnered much interest. I can quite understand, health issues can be depressing):
I called back my ENT to posit more questions, and was told he was out of the country for a month. Gosh, it was nice of him to (not) mention that when he’d told me (3 days before) to call any time if I had questions or concerns.
After a mad scramble to find another ENT who could see me ASAP, I saw ENT#2 who took a look at my MRI and myself, and concluded: take it out. Now. It will only get bigger and more difficult to deal with, and it could be dangerous and we won’t know unless it’s removed.
It gets better: ENT#2 pointed out that the results of my previous biopsy were a crock (my re-interpretation of her words): the biopsy had not penetrated the tumor and had sample the lymph node, not the parotid. So, yes, I may really have cancer. Not a likely possibility, but not something to be taken lightly. And the only way to really find out is by operating.
So, I will be scheduled for surgery in the next coupla days to remove the tumor. please wish me luck.
First off, the good news is that the biopsy came back as benign. So there’s no real rush on this, you can take some time and make sure you make the best decision.
About the surgery…
Generally anytime they do work in the neck or head you’ll run the risk of facial paralysis, there are a lot of muscles and nerves up there and no matter where they actually do the work, you NEVER know what could happen during the surgery and what the have to end up doing.
My advice would be to call the best teaching hospital in the state and start asking question to whoever will talk to you in the oncology (sp?) department. Then try to figure out who the best surgeon in the state is for your procedure. The better the surgeon and the more familiar they are with the specific operation the lower your risks of anything going wrong. But definatly check out who the best person is. Most teaching hospitals won’t have a problem about suggesting the best person to go to. Usually that person works at their hospital and trains new doctors on this operation.
But the major thing is: do what the doctor recommended to watch it while you’re looking around.
