It has been almost 6 months since my diagnosis and the surgery, but I am still puzzled by what has happened during the diagnose process.

I was referred to my ENT doc by my family Doc. after I noticed a lump at my left tonsil and enlarged lymph nodes. ENT doc took the first biopsy (1cm X 1cm)which came back negative,the report stated that I had chronic tonsillitis, the ENT doc was not convinced with the result, he took a large piece tissue (1cm X1.5cm) from the same location and sent it for the 2nd biopsy. this time the result came back with tonsil cancer.

After that,the doctor order a CT scan, a Chest X-Ray and PET scan to see if the cancer has spread.
I was happy that the PET scan has showed showed no spread of cancer, however, the PET scan did not show the tonsil cancer either, although it has been confirmed by the 2nf biopsy. My oncologist said,pety my PET scan was false-negative and should be ignored.

I went for the surgery and RAD. now I am OK. but the process of diagnosis confused me a lot, two biopsy showed opposite result, the PET scan was negative. Does anyone has similar experience with PET scan.

As good a technology as PET is, it is not a definitive diagnostic tool for cancer. It has a (relatively) high rate of false positives and negatives. Even a positive PET needs to be confirmed by an actual biopsy of the hot area in the PET. I would place much greater faith in the surgical biopsy and that pathologist's report. It is not unusual for a very small biopsy, including FNB's to miss a cancer. Your doctor

Hi WZ,

My daughter didn't have a PET scan yet, but she had a CT scan in August. It failed to show the tumor or the 4 involved lymph nodes. The tumor was 3 cm. and the largest lymph node was 1.2 cm., but nothing looked wrong on the scan. I hope the MRI and PET scans are better.

Rosemary

My CT scan show the lymph nodess are around 1.0 cm but the surgical pathology report stated the largest lymph node being 3.0 cm. There were only two weeks between the scan and suegery.

My initial stage was T1N1 but final stage was T1N2 (stage 4) because they found 3 more positive lymph nodes during surgery (I do not know the size of these nodes). I asked the RAD Oncologist that for those who did Radiation before the surgery, how couod they determine their tumor stage because some of the positive nodes were shrinked by the RAD. He said that was a very good question, as a matter of fact, some people never know their stage.

Hi WZ:

Just to make things even more murky...both Dave's surgeon and the radiation oncologist confirmed for us that it is believed that tumors shrink after they are removed from the body, making true analysis of size variable. So, kind of gives new meaning to "size does matter". We also learned that some lymph nodes that appear normal via CT or on gross inspection can indeed prove positive on lab analysis. Keep in mind that pathologists are also dealing with virtually microscopic size nodes and when they are "counted" this is referring to only nodes that can be absolutely identified. Our surgeon further explained that the number and appearance of nodes varies like the shape of people's ears, which is why they can only "do the best they can do" removing them all.This makes a stronger case for post-op radiation to get the miniscule tissue that may have been left behind because it couldn't be seen by the naked eye.

Caveat to Brian-feel free to edit if I botched this explanation in any way.

Kim

Did Dave have Chemo with RAD or RAD only. What the type of cell he had. Mines was kind of rare, it was undeifferentiated SCC (lymphoepthelioma), Doc said this type of cell is very sensative to to RAD, that is the good side, on the other hand, it tends to spread easily. So, he convinced me to have concurrent Chemo.

Hi, My name is Sherrie my husband had Tonsil Cancer, I am looking at his pathology report and it says:
Invasive, poorly differentiated sauamous cell carcinoma. Stage IV He had radiation concurrent with Cisplatin. Doctor gave him no choice, told him they had to go at this with both barrels.
He had three large nodes also involved.
They did a Radical tonsillectomy as they call it, Mandibulotomy and a Radical neck dissection.
Good Luck!!

Hi, Sherrie.

It appears that I had similar treatment procedure as Dan. I had my surgery done in Aug 2002 and finished 33 rounds of RAD with weekly Cisplatin in Nov 2002. During the surgery, a pectoral skin graft was transplanted from my chest into my mouth to fill the void left by the tonsilectomy, did Dan have any skin flap transplanted ?

I am currently in hyperbaric oxygen treatment because of the infections occurred in my chin. My ENT doctor was worried the infection may get into the mandible causing osteomylitis Fortunately, the nuclear scan showed that the mandible was fine at this moment.

When Dan had his mandiblotomy, did he have a mandible plate installed ? Does it cause any problem to him ? To this date, I still felt sore around the plate when I chew, and lymphedema developed in my chin around the plate, did Dan have any of these problems ?

Hi WZ
Dan had all the surgery on the same day. We found a egg size lump on the side of his neck under the side of his chin at the end of June, by July 20th we knew what kind of cancer etc. Dr told us he would do the Mandiblotomy at the same time as all the other surgery. He wanted it all out in one piece, I never asked why.... He didn't get a skin flap, the Dr said if the void isn't too large he prefers streching the back of the tongue to cover the void. It makes his tongue a bit shorter on that side but not noticeable.
His main problem with the procedure is he can only open his mouth two fingers wide. (fingers going up and down) I can fit three and he has no feeling on that side of his mouth,lip or tongue. I think the opening problem is due to the plate.
The dr said there are so many chances for infection with a flap( food getting caught etc) and at the skin graph site. He only uses the flap when the area is large.

Dan did have a plate put it, no problems with infections, just not being able to open his mouth.
He never had a peg tube, he was actually able to eat through most of it. He was done with radiation and Chemo the early part of Oct 2001 and was eating meat by Nov. Lucky I guess.
Dan hasn't read too many posts from people who have had mandiblotomys, do you have numbness?

Good Talking to you
Sherrie

Hi, Sherrie.

I also had all my surgeries done in one day, it lasted 8 hrs and I was in ICU for 2 days before transferred to floor.

I did not have PEG put in either, because I was afraid that the Chemo has made me too weak to resist any possible infection. My radical neck dissection was on the left side, the Doc removed total 75 lymph nodes (4 positive). Untll this date, I still do not have any feeling below the left jaw bone, further, the rear left portion of my tongue was always numb. I could not open my mouth wide either, not even two fingers, just a thumb wide. I was able to eat soft food in Dec 2002 and some of real food this month (with water of course), I had Hyperbaric Oxygen treatment since Jan 6 this month, it helped a lot on the healing of RAD damaged tissues and prevent further infections.

The main problem I have right now was the dry mouth in the night, if I do not swallow when I am sleeping, it is OK, but if I do swallow, it will hurt big time because of the lack of saliva and I almost wake up every hour to drink some water. How is Dan dealing with it ?

Another problem I have is the skin graft. It become tight and stiff after radiation. The sensation of pulling/pressure is strong and constant. The left shoulder/chest is tighten up. It takes over my attention, preventing me from focusing on my daily routines. I do not know if the Hyperbaric Oxygen treatment will help on this or not.

Nice to talk to you.

Hi Sherrie and WZ,

My daughter had a mandibulotomy, partial glossectomy and modified radical neck dissection. Her cancer is base of tongue, but it extended along the tonsillar pillars. She did have numbness after the surgery. Now though, almost 3 weeks after her last RAD treatment, she has a lot of pain along her jaw where the plate is. Since her dissection was a modified radical, the major nerves and veins were preserved. We were told that she would have numbness at first, then the feeling would gradually return as the nerves healed. I'm not sure if it is normal to have so much pain in that area or not, but we will be asking the surgeon at her next appt.

If your dissection was radical, you may continue to have some numbness because some of the major nerves were not preserved. I'm not sure which would be worse, the pain or the numbness.

Heather also can't open her mouth wide. Before she started RAD, she was using a Therabite appliance and it does work. She had significantly increased her mouth opening. She will start using it again after the pain from the RAD subsides. It is expensive, but her insurance did pay for it. I understand some companies won't cover it because it is also used for TMJ and most companies don't cover TMJ treatments. Anyone that really wants one needs to convince their ins. co. it is for a surgically induced condition and not for TMJ.

Rosemary