hello everyone,

I'm really happy to have found this site, and for all the wonderful folks that take the time to post. No one wants this, but having others to help with the journey is comforting.

My brother had a right lateral tongue biopsied in early April. The initial pathology report showed 'mild dysplasia'. Being an experienced patient myself, I asked for a second opinion on the pathology. The second report graded the biopsy as "high grade dysplasia".

I immediately took my brother to a CCC near us (University of Chicago), and had the lesion taken out via a wide local excision. The final pathology report showed, "Ulcerated mucosa with moderate-severe dysplasia, and a focus of microinvasive squamous cell carcinoma"; the margins were negative.

I know he is relatively fortunate; it could have been worse. But, I know this disease is notorious for its varied behavior.

My question is - now what? We have a follow-up meeting with the ENT oncologist next week. But, what is the typical protocol after this? I'm wondering:

1. Will (or should) he undergo neck dissection?
2. Will (or should) he get MRI/CT/PET-CT (or all 3)?
3. His biopsy wasn't tested for HPV. Should it be?

Sorry for the flurry of questions. I'm still digesting this. A small part of me was hoping that the final pathology would show just mild dysplasia. Now I have to accept the reality of the situation. I'm planning on getting a second opinion at MSKC or MD Anderson, regardless of what our ENT tells us next week.

Tom

Hi, Tom --

Your brother is lucky to have you in his corner! His case sounds very similar to my husband's (see my signature below).

Once cancer was diagnosed, my husband got an appointment with a cancer specialist (an ENT) at Johns Hopkins -- he hadn't gone there initially because the first biopsy by an oral surgeon of a very small piece of his leukoplakia showed moderate dysplasia, not cancer, and I didn't know enough at that point to push for having the excisional biopsy done there. SCC in situ (small bit superficially invasive) wasn't diagnosed until the excisional biopsy, a month after the oral surgeon's biopsy.

The general ENT (not a cancer specialist) who did the excisional biopsy ordered a PET (I think; it may have been PET/CT) scan, which came back negative for any spread. He also was talking neck dissection, etc. The cancer specialist at Hopkins whom my husband saw for a second opinion got all the test results, biopsy reports and so on from the oral surgeon and the general ENT and also did his own examination. He said additional treatment wasn't necessary at that time and watched my husband very closely -- every six weeks or so for the first year. The time between appointments gradually stretched out, so by five years out he was being seen at Hopkins once a year.

My husband still gets thorough exams every six months, using a VELscope, at his dentist's office. In the seven years since diagnosis he has been referred a time or two to the oral surgeon (a specialist in oral pathology) out of an abundance of caution, with nothing untoward or suspicious being found.

Given the location of your brother's cancer, HPV+ is unlikely -- it's far more prevalent in base-of-tongue (BOT) cancers -- though if testing is offered, he might as well get it checked. My husband didn't, as testing wasn't routinely available in 2006 -- his was on his mobile tongue as well.

Your brother is in a great place if he's being seen at the University of Chicago, and a second opinion from MDA or MS-K certainly wouldn't hurt. Just be sure that wherever he gets his follow-up, it's with cancer specialists who see this all day, every day -- not a "general" ENT who spends most of his time taking out tonsils and putting in ear tubes.

Thanks Paul.

Persistence is the name of the game in our medical system. It's unfortunate, but unless you're lucky enough to find a great team of physicians, you have to do a lot of legwork.

My brother did have a period of 5 years where he smoked 1-2 cigarettes a day, chewed tobacco, and drank socially. All that stopped about 7 years ago. Since ~2006, he just drinks socially.

I don't think tissue was saved. The surgeon did not send frozen section margins. The entire specimen was submitted. I wish I had known about the requirement to have frozen tissue saved. I can ask to see if they can do the test on the existing tissue.

Welcome, and good work being persistent. I had Tonsil, BOT cancer with lymph node metastases that was confirmed by CT, FNAB, PET/CT, and direct biopsy.

1. I doubt it, unless they do a scan, see something suspicious or FNAB confirms. Also depends on tumor size, location of tumor like floor of mouth, which may spread differently than lateral tongue.

2. Maybe. I would want one. Chest x-yay too. Did your brother smoke.

3. Yes. They still can do a test if the tissue from biopsy was frozen, saved. Most HPV, 90 percent, are in the oropharynx. If HPV, they should look at the tonsil, BOT by endoscopy/triple scope.

Hope this helps.

Thanks Leslie. Anyone going through this will attest to the fact that it's easy to spiral into dark places when digging around online. Very happy to hear of your husband's continued good outcome, and grateful that you share it.

If the ENT surgeon does not offer imaging (unlikely), I will likely insist on it.

I'm torn on the elective neck dissection, however. From my reading, there seems to be quite a bit of controversy over it (for early lesions). A few posters on OCF seem to have benefited by it.

Anyone have experience about the side effects/morbidity of a full/modified neck dissection? I feel like if there's a 20-30% chance of picking up an occult metastasis, it's worth going for it. But, I'd hesitate if the morbidity afterwards was quite significant.