I have not been active on this forum for a while but I received a lot of help from members in 2005 and 2006. I am thankful for that help.

My wife was diagnosed with T2N1MO SCC left lateral tongue in Jan 2005. She underwent surgery and completed 35 XRT radiation and 4 Cisplatin treatments in July 2005.

Life since has not been easy. She underwent additional tongue surgery at the tumor site in December 2006 to remove "hard tissue" which turned out to be scar tissue. She has had at least seven dilations of the esophagus for inability to swallow and multiple swallowing tests. She is still on morphine for mouth pain.

Her past yearly CT scans were clear. This year however the medical oncologist requested a PET/CT and we received the results this week which read as follows:

�Head/neck area: narrowing of the supraglottic trachea and loss of preepiglottic fat on the left side with increased soft tissue obliterating the left piriform sinus with moderate activity, SUVmax 5.4. In view of length of time from radiation and current symptoms, this finding is suspect for dyssynchronous primary neoplasm. Recommend direct visualization if not recently performed. Patient status post modified left neck dissection. There is fatty placement of left parotid gland. Unusually prominent right retromandibular vein. No pathological significant cervical adenopathy.�

The oncologist tried to reassure us that this could be scar tissue and that these reports have to be written a certain way due to legalities. Nonetheless, we are terrified by the findings.

We have an office visit scheduled with our ENT for next Tuesday. We are anxious.

I would appreciate hearing from other forum members who may have had similar experiences with PET/CTs.

Thank you for your help. It is much appreciate it.

Vin,

First realize that while good, PET's and CT's are fallible and have driven medical teams to jump to conclusions as well as operations that turn up nothing.

Her SUV uptake is higher then norm (normal is 2.5) it's still relatively low and the PET has a 30% false positive read. Don't jump to conclusions based on these tests, your oncologist was spot on. I say this from experience as I had several hot spots (4-4.5 SUV) in a read earlier this year...my ENT told me he believed them to be scarring and healing spots and to wait out till the next scan. I did and my next scan was superb.

As hard as it sounds, put it out of your mind, enjoy your holiday and remember...It's NOT CANCER until a biopsy says it is!

Good Luck, Merry Christmas....and be at peace. Every breath is a gift and this time of year should remind us of that, no matter our religious affiliations or lack thereof.

Eric

Eric,

Thank you for your kind reply and for sharing your experince with your tests earlier this year showing hot spots. I am very happy to hear that nothing showed in your next scan. This is encouraging for us. As in your case, we hope that our oncologist was correct in saying that this could be scar tissue.

We have an office visit with our ENT tomorrow at the USC Norris Cancer Center in Los Angeles and hopefully he won't find anything. He has been our doctor since 2005 and we trust him.

Thank you for the information on the PET false positive rate and SUV. I was not aware.

Likewise, please enjoy your holidays and have a Merry Christmas.

Vince

We saw our ENT yesterday. His first reaction after reading the PET/CT test results was to do a biopsy. He then examined the area which lit up on the PET at the base of the tongue on the left side with a small mirror and he also felt that area. He did not see or feel anything suspicious.

He gave us three choices: 1) Do the biopsy; 2) Do an MRI; and 3) Keep monitoring the suspect area.

The ENT told us to come back in three weeks while we contemplate our options and decide.

I would like to ask other forum members about their experiences with MRIs.

We are not sure if an MRI would help in identifying the suspect area as cancer, scar tissue or an inflammation. If the MRI would leave additional doubts as to what the problem is than it would seem best to proceed with the biopsy.

Thank you for your help and assistance.

I was given a similar choice last June. I chose to do the biopsy right then and there. Turns out it was cancer for the 3rd time.

A biopsy is the only way to tell for sure if its cancer. Not sure exactly why an MRI would be suggested, it would not prove you had cancer. I was given an MRI before my surgery. It was for measurements to make the steel jaw.

Not sure if you are aware, but PET scans are known to give false positives. I speak from experience with that, Im sure its happened to many others on here too. Hope it turns out to be a false positive reading and nothing more.

Vin,

Christine said it, not sure why he wants an MRI when a biopsy is the only way to know if it's cancer or not. If he's examined the area and not found nor felt anything suspicious you only have 2 choices, a biopsy or wait it out and monitor.

PET's are fallible as stated several times above, just keep that in mind. I was in the same situation in spring of this year, unlike Christine I waited it out and the next test came clean. My policy in business though was always error on the side of caution.

Good luck

Eric

Hi Vin,

I see you and your wife are in my neck of the woods! To be on the safe side, I would have the biopsy. My husband Ron is 5 year's out and just found a "spot" in his throat that didn't look good to the Doctor. Ron goes to UCLA and they performed a biopsy this last Tuesday. I can't tell you how glad he was to have it done. Best of luck to you and your wife.

Shelley

Hi Vin,

personally, i would have the biopsy.
keep us posted and hang in there!
teresa

Christine,

Thank you for your reply. I am very sorry to hear that your biopsy showed cancer again. My wife and I send send you our best wishes.

After discussing it some more, we feel as you do about the MRI. We have decided to contact the ENT's office and schedule a biopsy. We are hoping that this is a false positive but we are anxious. We have had a few other scares in the past 4.5 years and all turned not to be cancer so we are hoping this time is same.

Vin

Eric,

Thanks for your replies and help. Having between through this for 5 years now since initial diagnosis, we feel as you do in erring on the side of caution so we are going to schedule a biopsy.

Vin

Hi Shelley,

We have been going to USC Norris for about 5 years. Overall we are happy with the the doctors and Norris as they have taken good care of us. We also have a support group (www.hncsupport.org) at Norris which meets the first Saturday of the month and which we have attended for the last several years and find helpful.

We have decided on the biopsy.

I read your other posts and I was very happy to hear that in Ron's case the doctor feels that it may be an infection which is great news indeed.

Best of luck to you and Ron also.

Vin

Teresa,

Thank you for the encouragement and help. We have decided to do the biopsy. I was happy to see that we made the right decision as everyone who responded feels the same.

My appreciation to this great forum.

I will post after we get the results.

Vin

Sorry I never posted. The biopsy result was negative and we were very very happy about that. We are experiencing a new problem.
My wife has been having pain in the right jaw. The cancer was on the left lateral oral tongue.

We saw her dentist in mid July who took x-rays and did not find anything abnormal. We thought it could have been a tooth problem. He prescribed penicillin. Right after, we saw her ENT and he said to take the penicillin. The pain went away.

She stopped taking the penicillin because we travelled to Europe on July 19th to celebrate her 5-five anniversary of the completion of the treatments. One week after we were in Europe the pain came back and the right side of the face was swollen. She started taking the penicillin again and the pain went away again along with the swelling.

When we got back from Europe we saw her ENT asap, which was the first week of August. He felt that she may have gotten de-hydrated in Europe which caused the pain to come back. Also he felt that there may be a stone present as a result to the radiation she had five years ago. I never heard of stones forming as a result of radiation.

I would appreciate any help with this.

Thank you.