Carol is 3 months post TX of aggressive radiation, no surgery tonsillar pillar cancer. Her recovery was slow and just recently was seeing the end of the tunnel. I noticed a small bump on her left chin and she said her left half of her lips, chin and cheek were numb and painful. Trying to be positive she thought maybe a piece of tooth was left behind when they extracted her teeth in Jan prior to TX. Or she didn't want to think of what it could be. She saw the ENT who told her she was doing amazingly well and then Carol told him of her new symptoms. He couldn't see anything inside her mouth, began to feel around, didn't like what he felt and did a core biopsy. We went back this past Friday and the biopsy is positive. A 2cm mass invasive SCC floor of the left lower jaw. "2 cm mass overlying left mandible at the mental foramen." This new mass has stumped the ENT and the 2 surgeons the ENT called in.

The ENT ordered a PET/CT Scan, but due to the cost of the PET and Carol's insurance (FL Medicaid), she has a CT Scan w/contrast only scheduled for Tuesday am. And makes her 4th trip to the Tumor Board that afternoon. After reading other posters thoughts about PET scans and articles I found on the net, I too would prefer the CT Scan for more accurate readings.

The 2 surgeons, one of whom Carol met at her first tumor board in Dec, briefly told Carol about reconstructive options, but wouldn't say much more until after the CT scan. They want to see if there is any metastasis.

This new dx is overwhelming and Carol is keeping her head up. I know it's very hard on her, especially when she was seeing the end of the tunnel....she is a fighter, cancer be damned.

We haven't told any of the family of this news and will wait to tell them until after the tumor board. We don't want to put a damper on everyone's holiday weekend and having them think the worst until we know the battle plan.

Carol was never tested for HPV, but I will ask to have the test done next Tuesday. The results may not help Carol but it may help future OC survivors and the Drs path on different treatment options.

I will post next week once we learn of the battle plan. Have a Happy 4th of July!

Linda

Linda, Im so sorry to read about Carols problems. Im sure you both are devastated. Let me tell you that a recurrance can be done. Ive done it twice. So please try to relax and enjoy the holiday with all your friends and family. Try not to let cancer steal your time away with worrying instead of enjoying others company.

If the doctors are talking about having her mandible removed, I can help you with info. I know you are on top of things and Carols best advocate. Ask some important questions like how much of the jaw would be taken and what would replace it and where are they taking the graft from.

How I wish this hadnt happened. But Im so glad you have caught it now instead of months down the road.

Linda,

I doubt that the recurrence would test positive for HPV. Was she a tobacco user ever? Did she have nodal involvement the first time?

I'm so sorry Linda! Hoping for the best possible news for tuesdays CT scan.

Hoping for the best possible news also. I'll be sure to keep both of you in my thoughts and prayers.

I suppose I should have started this thread under the recurrence forum? From what I have read in that forum survivors have been a few years post tx not a few months. Carol was scheduled to have a CT Scan in August for her original dx, 4 months post tx. She would have found out then if any surgery would be needed? I was told any scans done earlier would show a lot of inflammation.

Christine - We were getting adapted to the new normal, but I suppose that's out the window now. I have read they can reconstruct the mandible from any one of 4 different bones. The fibula is the most common and most successful? Carol broke her left leg as a kid and her leg is a little shorter than the right. Could that make a difference in which leg to take the fibula from? Or would they use another bone, like from her shoulder? What about steel or whatever metal they use? I'm sure cold weather would affect the jaw? I want to be armed with info and try to ask all the right questions come Tuesday.

David - Carol was a smoker, quit at dx. Also loved good beer and vino during the holidays, quit at dx. She had 2 nodal involvement, one necrotic level 1 and one enhancing level 2. I'm going to ask about the HPV Tuesday, couldn't hurt.

Elizabeth and Patty - Thank you for your prayers. They are really appreciated.

Linda

Linda, the doctors probably would take that into consideration when selecting the bone. Their proirity is to the patients well being, remember their phrase...."first to do no harm". This is going to sound awful, but here goes. My doc told me that the most successful operations actually are now using cadavar bones. This would spare her the pain of healing another area and saving her legs. After you have more info then it will be easier on both of you.

A recurrance can come back very quickly. Ive seen it happen to some within 2 or 3 months.

Linda,

Even if the original primary tests positive for HPV with her smoking history I doubt that will have any bearing on this second primary which is likely a result of the tobacco history. The original HPV research demonstrated that HPV responds better to Tx and (therefore) has a less chance of recurrence compared to non HPV positive SCC. Further papers have indicated that when years of tobacco history are added to mix with a HPV positive test it changes the estimated outcome in a negative way moving toward a HPV negative Dx. Please remember this is purely a statistical approach and may not at all represent what actually happens to any one patient.

Christine,

Cadaver bones, huh? Well I never heard or read about that one! That would put a different spin on things. I wonder what the protocol for that would be? Would the bone marrow have to match? I'll have to get to googling. I'm all for keeping everything focused on the area of cancer and not having to worry about other body parts healing that were used to reconstruct. You know what I'm trying to say? Believe me when I say "I" my thoughts and intentions are focused on Carol, her treatments, options and healing processes. Tuesday will tell what options she'll have.

Unfortunately you can add Carol to the people you know of with recurrences in 3 months.

David,

I kind of beleive Carol's history of tobacco use resulted in her OC. But, I also smoked until I had a heart attack last August, and I have a history of problems with my teeth and gums. Some studies have linked problems with the mouth to heart disease and OC. I'm not dwelling on it but it does make me wonder, why not me? Everyone's genetic makeup is different (thank god - who needs two of me walking this earth?). It would be nice if the scientists could figure out the individual's makeup and treat the disease accordingly. Hell, if and when they do I'll be long gone.

You have convinced me to drop the what if HPV aspect of this disease as Carol has been diagnosed with another recurrence. It's time to move on and concentrate on what will be happening on Tuesday.

As always your input is greatly appreciated and well regarded.

Linda