Rebecca,

That's very young for SCC especially if it's HPV positive. Do ask to have her cancer slides tested for HPV. A PAP will only tell if she has HPV cervically, not orally. With a BOT Primary she has a 70+ % chance that HPV is the culprit which would be a good thing.

Are they planning to do a PET to determine if any nodes light up?

What do they say is the next step?

Where is she being seen?

Are you near a comprehensive cancer center?

She will be having surgery at Vanderbilt within the next 2 weeks. Doctor's plan is to cut from below her ear to her chin, make a zig zag incision up to her lip, remove a tooth and cut through her jaw bone for better access to the area. He estimates that he'll need to remove about half of her tongue. She'll have the transplant from her forearm main artery and veins and skin graft from her thigh. Trache and feeding tube. I've searched everywhere to see pictures of people who have had a similar surgery to see how they healed and what the scars look like, but with no luck.

Thanks for the advice. Do you know where we might find before/after pictures?

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Most people who have had mandibulectomies do not pose for before and after photos so Im not surprised you havent be successful with finding photos. Its going to be a very long road for your sister. She needs to prepare herself for the possibility of looking different for at least the next year. Anything that is done can be changed after a minimum of one year of healing. Looks fade with age and they really arent as important as everyone thinks. It took me waking up disfigured to understand how unimportant looks are in the whole scheme of things. I would much rather be unattractive and be alive than be pretty. I have always been a very strong independent person so I adjusted easier than most people to my situation. It might be a good idea to have your sister seek out a therapist to begin working with to handle everything.

Right now she should focus on her nutrition and hydration intake. Every single day she needs to take in a minimum of 2500 calories and 48 oz of water for at least thru the next year, maybe 2. This will help her body to recover and get thru everything she is facing. At this point she should eat all her favorite foods and drinks, without worrying about gaining a few pounds. That probably would be a good idea to get a little extra weight on as she will most likely lose that plus more during all the upcoming treatments.

Best wishes to your sister with everything.

Hi there. I think the outcome of the surgery will depend on the skill of the surgeon. My dr. Wanted to do the same to me. My tumor was under my tongue on the left side, my dr wanted permission to split my jaw - which is what you described. I told him he could have it but not to go into the operating room with that as a plan of action. That I do film work for a living, and if he were to split my jaw that would damage my ability to ply my trade. If he absolutely had no choice to get all the cancer then that was fine, but to do his best not to if he could avoid it. (He said he lost 10 lbs in the OR that day - trying not to split my jaw) The smallest margin was 6mm which is quite good I'm told, he got it all and did not have to split my jaw, he even did hidden stitches in my neck. God bless him. That said. my first room mate in the head and neck ward had had the surgery you described and after 20 days in the hospital (they were being stuffy about sending her home without her eating a lot so they kept her a very long time) she looked okay, I gather that when then area was completely healed the scarring would have just been thin and white. I would ask why a zig zag and I'm assuming there will be a plastic surgeon present to rebuild the graft area - hopefully he will be the one to close her up. Is she being seen at a comprehensive cancer center? Usually they use a team approach that includes a plastics guy. Since she's so young I would ask that they try to have minimal scarring, in the long run her life is far more important but a young woman does tend to value her looks. Dave the Aussie (Dave 1987 or something like that) was 18 at time of dx for the same cancer and he had the same operation and his scarring isn't too bad - he's on Facebook you can friend him. this is in no way like a mandiblectomy which Christine mentioned. Best of luck

Thanks for the feedback. He explained the zig zag incision would be used because the eye follows a straight line, so this will make for a less noticeable scar.

NOT TRUE!!!! a thin well formed straight line is far less noticeable.
just saying.

Anyone else have input on this?

I had a selective neck dissection. My surgeon used a crease in my neck for the incision line. You can't see the incision at all. I'd have to point it out and even then it's hard to see.

"T"

I would agree following the natural crease or wrinkle in the neck would hide the scar best. I just had mine and I think it looks pretty good and hopefully it will get even better with time.

[quote=CWB]I would agree following the natural crease or wrinkle in the neck would hide the scar best. I just had mine and I think it looks pretty good and hopefully it will get even better with time. [/quote]

I had the same kind of surgery (hidden in a fold in the neck, which as others have stated, is invisible unless pointed out) to remove a tangerine-sized tumor from under my jaw.

The surgeon originally thought that it was in the parotid gland, but it turned out to be a metastatic tumor in a lymph node. It took nearly two months to locate the primary in the base of my tongue, and in the search, three more metastatic tumors were found in lymph nodes in my throat (on the other side.)