Stage 4 Tonsil cancer. Lymph node involvement both sides. No surgery. 7 weeks of cisplatin and radiation. Discovered with lump on right side just underneath jaw. Now a year out of treatment. After treatment the "lump" was gone. Then "grew back." Oncologist says it is just "scar tissue." From the radiation? Never had surgery. CT scan and then Pet scan a month or so after treatment completed show tumor almost nonexistent. But then this "growth" of "scar tissue." You can see the swelling on the right side of neck below the jaw line. But oncologist swears just scar tissue. However, he will not do any CT or Pet scans, ever, unless he sees "something." Insurance will not pay otherwise apparently. Now this "lump" or "scar tissue" will move side to side if pressed.

Any thoughts? No symptoms, no pain, no difficulty swallowing (or no more so than expected).

Hi Ron, radiation can cause massive scarring. The same kind of radiation burns that people get on their necks during radiation happens inside the body too. Having said that, I cannot say one way or the other what is happening with the swelling you have noticed, not being a medical person. Can you get a second opinion?

Ron, welcome to OCF! A couple things you wrote make me concerned. After finishing treatment your tumor is almost nonexistant? That does not sound right. The cancerous tumor should have been gone! If you had a scan only one month post rads that was too early to have one. At only one month post rads there would still be significant swelling which would show false results. A follow up scan should be at least 3 months post rads at the earliest to get accurate results.

Do you have an ENT following your after care? If so see them to get checked out. I also suggest going to a major comprehensive cancer center (CCC) for a second opinion. Below is a list of CCC's. They are the countries top hospitals to treat cancer. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get another opinion.


CCC list

US News Best Hospitals List

Please dont worry about what Ive written. I dont know if you have anything wrong or not. I always advise patients to get checked out if they feel something is not right. I hope its nothing serious!

Best wishes!!!

After treatment I first had a CT scan and then a Pet. The pet was a few months after the end of treatment. The CT scan earlier.

I don't know why I received the CT scan. The CT scan was ordered by the radiation oncologist, and the PET was ordered by the Chemo (Med) oncologist who asked me why the other oncologist ordered the CT scan-I told him I didn't know.

I am not clear as to what the oncologist said about the Pet results except that that he said the cancer was gone, but I do recall him saying that something to the effect that the tumor shrunk-not that the tumor is gone, the cancer is gone.

This is the treating oncologist, not the ENT, I don't see an ENT just the treating oncologist every couple of months, who told me after the PET scan a few months after treatment that their will be no more scans, ever, unless he finds evidence of a new primary or a reccurence.

With respect to the swelling, the first time he said it was muscle tissue. The next time it was scar tissue. The last time-again said it was scar tissue and he set the next appoint four months down the line. I got to contact the insurance carrier and look into the procedure to get a second opinion.

The ENT is really useless. When he ordered the original biopsy when all of this started, he failed to have them test for HPV. So I do not know if this was HPV related or not. When I asked about it, the radiation oncologist said it makes no difference as we treat it the same anyway. But I havn't seen the ENT since I was diagnosed, twice prior to starting treatment.

Thanks to all of you for your insight.

Ron, could you ask to have a copy of your CT and PET scan reports? It helps to have your own copy if you do go and see another doctor for a second opinion. Of course, you will also get to read what the radiologist said in the report.

Hi - you need to know if it was gone (at least on the scan) at the end of your treatment. There is no such thing as nearly non existent. With Cancer it's either there or it's not. And if it's there it needs to be dealt with. Period.

I would ask for clarification. No Dr. can tell you if you are cancer free as not everything shows up on a scan. But if you have a scan that offers up any questions as to whether the treatment was effective and if there is still something of concern there then you need to know what it is (via biopsy) so you can either have it removed or follow up with other treatment.

Hugs and best of luck.

Ron,
Please go see an ENT and tell of your concern! My Father had 2 tumors that were dissolved according to Dr's and now he has a 3rd tumor that was discovered, obviously not all cancer cells were killed, it keeps coming back!

I don't want to scare you, but you are the only one that knows your body. Get copies of your reports and go get a 2nd opinion at a CCC. Don't wait, keep calling your primary care doctor to refer you to another ENT or call the same ENT you had previously seen about this new lump. There must be a way for you to get seen through your insurance company, just find the way. I will be praying for you!