Hi! My sister just finished radiation several weeks ago and her last appointment went great. She had cancer of the parotid (salivary) gland and had surgery to remove it before radiation. They did not get clear margins and the cancer was found in one lymph node. She's scheduled for a ct-scan in two weeks. Yesterday she found a hard lump in front of her ear. We'll call the doc tomorrow morning first thing but we're scared to death it's come back already. We were told that chemo doesn't work on this type of cancer but I'm not sure why since it seems to be given for many other head and neck cancers. What are the options if it has come back? I know that they can't radiate the same area twice. Any info would be appreciated. I'm trying to stay positive but it's hard! She has no insurance and was just starting to look for work again. It seemed like she might finally be able to get on her feet after this nightmare.

Robin,

Do you know what kind of salivary gland cancer it was?
I was also told that chemo wasnt used for salivary gland cancers but there are several clinical trials for recurrant salivary gland cancer.
Call the doctor in the morning and try not to worry. It could just be a swollen lymph node from something else. A couple of months ago, I found a small lump below my ear. It turned out to be nothing and went away about a week later.

Thank you so much for the words of encouragement. I think it was andenocarcinoma (sp?) but I can't remember for sure. I'll find out when we go back to the doctor. The doc said it was a fast growing type of cancer. He also made the HUGE mistake of telling her it wasn't caused by her smoking (which I still can't believe he said) and she continued smoking until recently when I convinced her to quit. She's also a recovering alcoholic so her risk factors for this cancer were huge.

Chemo for H&N is not typically used as a first line treatment but as an adjunct to radiation therapy (enhancer). It can increase the effectiveness of the radiation by as much as 13%.

You're getting ahead of yourself here - wait until all of the diagnostic information is in. Like Mellay said it could be many other things besides a recurrence. It's all too easy to panic - we've all been there. Take a deep breath.

Robin - I agree with Mellay and Gary - its much too soon to panic. The whole diagnosis process is scary - the new vocabulary of scary sounding words and the implications.... Take that deep breath and slow down a bit. Are you getting second opinions about her options? Are there other docs you can consult there? There is always more than one way to treat a condition, especially cancer.

Radiation can be given until an upper limit is reached. And I did have chemo as a primary treatment for tongue cancer (not the same cancer as your sister's). It was part of a trial being run from the University of Chicago. Ask your doc to read up on other options and tell you about them. Be strong. We are with you both. Tom

Thanks Tom and Gary! I know the saying - it isn't cancer till the doc says it is. The scariest part about this is she's totally broke. No job, no insurance, no nothing. She's making $25 per month payments to the doctor for the last surgery and her radiation was picked up by our state's indigient care program. And if you're ever tempted to think that health care isn't influenced by finances - think again. I've just seen first hand that it IS. Do I think she's had the best care or advice? No way. But still I'm thankful that she got health care at all! As far as second opinions, I have no idea who would agree to see her at this point. MediCaid and every type of social services that she's applied for has turned her down.

I appreciate your support and we'll hope it's not a reoccurance.

In California the county health care system is pretty decent. I had a friend go through lung cancer treatment and she had all of the state of the art chemo cocktails that the CCC's are currently recommending along with IMRT (she had a 15% chance of 5 year survival and has over 2 years in remission). Many of the county hospitals are also teaching hospitals and not as bad as you think. A person who is indigent or with no property actually has better options than you would imagine. You need to set up an appointment with the hospital social worker to see what all of your options are. Qualifying for Medicare can be a bit daunting - you have to stay with it. The radiation being picked up by the state is huge - my treatments were 5K a pop (it was a $300,000 program in total). Why aren't they picking up the surgery as well?

If she had IMRT they may be able to irradiate again if the new region of interest is not the same as the original site, otherwise "salvage surgery" would be the last resort.

Gary:

She didn't qualify for Colorado Medical. In our state you have to have kids to qualify. Go figure. She's also been turned down for disability but she's finally getting strong enough to start looking for work again. In the meantime, my mom has been paying all of her bills. The state's indigent care program that she's on did pay for the surgery and radiation. The radiation oncologist told her that IMRT wouldn't work for her and I wonder if that was because of cost? They knew she wouldn't be paying. She has seen the hospital social worker and got some help through a program there that paid her rent for two months. The radiation oncologists wrote off part of the bill but she still owes about four thousand dollars to both them and her surgeon. They have been wonderful and are taking payments of about $30 per month. Not sure what will happen if the cancer has come back. She's seeing her doc on Thursday.

Well, my sister had appt. with her doc and the good news was he seemed very confident that this new lump isn't a reoccurance. Her CT scan is still scheduled for next Wednesday and another follow up with her doc on Friday. At least we can feel a bit relieved although I know we won't totally relax until we get the test results. The doc said something about it being part of her jawbone? I wasn't at the appointment so couldn't quiz him on this. It seems like a weird thing that her jawbone would suddenly form a lump. Any thoughts?

Robin - The lump in the jaw is familiar to me. After my rad tx, I had a number of odd after effects - some that lasted for months. One of those effects was a bump/knot/lump on the side of my jaw. Two of these came and went within a few days and were never dramatic. One lasted over a month though it was slowly shrinking. My rad onc gave the condition a name, but I was too foggy then to remember it now. Healing tissues can do some odd things - especially radiated tissue. Hang in there, and come back and tell us your news, Tom

Thanks Tom! I pass on all the wonderful info that I learn on this board to Reagan and it helps tremendously.

Just wanted to tell you all that the CT scan came back showing no sign of reoccurance! She is, however, having a LOT of pain in her lower back/spine so I just took her to my chiropractor. Hopefully that will help. She's also been throwing up a lot and I'm just not sure what's going on. Is it normal to have all these weird things happen several months after radiation ends? I've read about nausea but she didn't have a ton of mucous and that isn't an issue now. No chemo either. Should she request blood tests or anything at her next ENT visit? Does the CT scan show if the cancer has spread or does it just check the head/neck area? Sorry for all the questions but I'm just not sure whether this is radiation related or something more serious.