I am a 77 yr. old woman who was just diagnosed with squamous cell carcinoma in the parotid gland. I had a lump appear under my ear and after a biopsy and pet scan, this was the diagnosis. I have had many squamous skin cancers removed in the last few years and I assume one of them got away and settled in the parotid gland. I am scheduled for surgery May 10, to remove the gland and surrounding lymph nodes. My concern is that a PET scan shows no other involvment except for the gland and I am questioning the need for removal of lymph nodes in the neck area. I was also told that I will have to have radiation after surgery and I am reluctant to participate in that. I have been told by friends that I should get a second opinion, but getting an appointment on such short notice is impossible.

What questions should I be asking when I go for my pre-surgery appointment next week.

Yes by all means get another opinion and I would go to Johns Hopkins or a similar CCC (Comprehensive Cancer Center).

Make this a huge priority.

Welcome to OCF! Im so sorry you have had the need to find this site. Oral cancer is very different than skin cancer and comes with different treatment options. Since you ave already had SCC previously then I really would stress the importance of being treated at a cancer center. Even just going for a second opinion at one of the country's top comprehensive cancer centers is a very good idea. Here is the list.

Best wishes!!!

Top Cancer Center List

Hi there... Hopefully surgery will be a quick recovery. I know some people are against doing a radical surgery and want to do the minimum. The concern with this is that a dr. will then be hesitant to do what he - in his educated opinion - knows he should. If your dr. is good and well versed in head and neck cancer, and hopefully is part of a CCC - I would take his advice. Chances are if he does what he is supposed to do and gets clear margins that will be the end of it. SCC is sneaky it can hide in the nodes and on a cellular level it is not detectable on a ct, or pet scan. Only when it becomes a certain size does a scan pick it up, or the node swell to a noticeable size. So your dr. is actually being proactive. The alternative is that you have the gland removed, and then often what happens is a few months later you note a swollen node and have to have a second surgery regardless.

With an HPV positive cancer it's different because HPV cancers (base of tongue and tonsil cancer - primarily) respond well to radiation and chemotherapy (which is the main treatment for this kind of cancer) so surgery is often not performed - though they do seem to take out tonsils.

With regular SCC - which is likely what you have -they tend to remove nodes as a precaution, knowing that the cancer cells can hide in the nodes.

It is entirely your choice - of course, and I know the surgery seems daunting but it's relatively painless (as they cut the nerves in the neck - and you are numb!) The only difficulty will be with your arm and shoulder post op - you will likely have to have physio to regain function. and massage to clear the build up of fluid.

I would do what I could to try to avoid having radiation and chemo - which may be a possibility if you do go ahead with the neck dissection. best of luck.

Thanks for the info about a second opinion. I just hope that I can get an appointment soon. Gurley

Hi Gurley, I' a male who'll be 74 in the day you are scheduled for your surgery.

Your case sounds like mine, it was not until she was in my neck that my surgeon saw that it was actually in an enlarged lymph-node and not the Parotid gland.

My further treatments were delayed (after the surgery) until they located the primary tumor (golf-ball sized) in the base of my tongue, and then more delay until they ran a PET scan and found three more tumors in the other side of my throat. All were in lymph nodes, and none showed in a PT or CAT scan (I had all 3).

I strongly urge you to follow your doctors recommendations re removal of the lymph nodes around the site of your Parotic gland. Not only is this standard practice in most internal cancers, but it is also part of the staging process. If they all come clean, that's good news. If they don't come clean, that's important information for determining the ultimate path to your successful treatment.

Good luck!

Gurley - Whoever you talk to about that second opinion, make sure you tell them how serious it is and that you are very anxious and stressed about it (even if you aren't). Tell them about your history and how urgent it is that you get a second opinion. Or if you have a very persuasive friend or relative, you could get them to call for you to explain how urgent it is that you get an appointment as soon as possible. Just waiting for something to happen can be very stressful and that doesn't do your health any good. When my son had an appointment two weeks away I was so anxious that my ex-daughter-in-law called for me and got the appointment moved up to the next business day! It can happen! They can move appointments around or fit you in between other appointments. Ask about cancellations. And let us know what happens.

Hi everyone - I will get a second opinion before my surgery, if I can get all the necessary med. records. I will be having the second opinion at Johns Hopkin and they will determine what they think the course of treatment should be. That will be the decision in my mind of what my next step will be - have the surgery already scheduled or wait to see what Johns Hopkins recommends. I don't know all of the medical terms but I seem to be able to describe in layman's terms what my problem is to people who need to know and my ignorance isn't as bad as I thought it was. Gurley, who is feeling pretty optimistic

You come across just fine here on the forum. Spend some time reading the forum and main OCF pages and educate yourself. When I first started out I knew NOTHING! I never even heard of oral cancer before. Thanks to this site I have learned an incredible amount of info.

Your plan sounds very good, getting a second opinion at one of the countrys top CCC. They will have a team based approach and have an entire team of specialists discus your individual case before they will make a treatment plan.

Please feel free to ask questions and we will help you as much as we can. Good luck with everything!!!


PS.... Please add a signature, it helps us to help you. Detailed instructions are included in the link I sent you thru a private message (PM).

Gurley,

You're right getting a second opinion at one of the top Cancer Centers.

Get all your medical records and the disk of your Pet/CT scan they'll want to look at the disk and go from there. That's what I did for Moffitt Cancer Center I had everything in hand when I saw the Surgeon. There was no going back because I didn't have this or that. I was told right then and there what would take place. You'll be able to get everything from your Doctor's, it takes a few days.

Keep us posted.

Take care,
Connie