Hi, there. I've been lurking for awhile, but this is my first post. Like Lynn, I had my little lump in my palate since 2007 and was told by oral surgeons that it was nothing to worry about. In November 2013, my dentist noticed a change in the lump and referred me to a different oral surgeon who did a biopsy on 12/5/13. Diagnosis came back PLGA and I was referred to an ENT at the University of PA Hospital. A CT scan revealed that my tumor was 1.8 x 2.1 x 2.3 cm in the midline/left hard palate, with bone extension. Nasal septum intact. Paranasal sinuses and mastoid air cells clear. No perineural spread found. Surgery was performed on 12/31/13 (Happy New Year to me, huh?) I lost over half of my hard palate, left maxillary bone and 5 teeth, but all surgical margins were clean and there was no evidence of perineural invasion per the pathology report. What bothered me was that the pathologist said lympho-vascular invasion was "suspicious."

I had a lengthy conversation with my surgeon, explained all the reasons that I was not going to consider radiation just because it was "standard protocol." The U of PA board meets every week to go over all H&N cases and he said he would discuss my case and get their opinions, but that he was not inclined to push me into radiotherapy. And, to date at my follow up visits, he has not.

My question to all of you is have any of you PLGA folks gotten a pathology report that said "lympho-vascular invasion suspicious" and, if so, what did you do? IMO, jumping into radiation on one pathologist's suspicion, without definitive proof, is overkill, given the life long, often severe side effects of radiation.

I also have an interim obturator, actually am in the process of getting the permanent one, so I would have a very big problem with radiation causing trismus and destruction of my teeth. I have to be able to open my mouth pretty wide to remove, clean and replace the obturator and without teeth I would not be able to retain it.

I am almost 67 years old and, at this point in my life, even if I am found to have cancer in my lymph nodes at some point, I cannot justify going through what so many of you have gone through to add a few years to my life ~ years that IMO would hardly be worth living with all the radiation side effects. I am one of those people who believe quality of life is more important than how long one lives.

Doctors always seem to gloss over the severity of the side effects of treatments and do not give you the true picture. That one has to get from people who have been through it. I know I was not made aware of the fact that I will never speak the same again (nasal now) and the nasal regurgitation, the difficulty chewing because of the wires on the obturator clamped to my teeth, etc.

Any thoughts from you PLGA patients would be appreciated.

_______________________
12/31/13 Maxillectomy (left), palatoplasty hard palate, split thickness autograft
12/13/13 Surgical obturator placement
pT2
pNX
pM Not applicable