I am a 40 year old male, no smoke or drink. Over the last year I have noticed a lump on the back right side of my tongue where the throat starts. I thought perhaps it was from my tongue rubbing against my last molar on that side. It got worse over the last two months so I went straight to the ENT. He was very concerned and wanted to take a biopsy and sent me in for a CT scan. 4 days later I went back to the ENT who told me the biopsy was negative for cancer and the CT scan was pretty unremarkable. No lymph node swelling and no sign of tumor. He did say however that he did notice something on the left side of my tongue on the CT scan that looked more like what he would of expected to see on the right side. But after a thorough visually inspection and another look from his colleague, he was pretty certain there was nothing on the left side. After breathing a sigh of relief, the ENT still had concerns. He told me to stick out my tongue and then informed me it was coming out slightly sideways, usually the characteristic of something pressing on my hypoglossal nerve in the base of the tongue. Because of this, he did a much more extensive biopsy on the right side where the lump/sore is. He got as deep as the muscles in my tongue. Now, the results have come back and this time they are positive for Squamous Cell Carcinoma, non-invasive, moderately differentiated...positive for p-16. I am very confused as there seems to be a lot of conflicting information. He is transferring my case to the Stanford Medical Clinic where I hope to get a bit more clarity. He was pretty confident that the tumor was confined to that area only as the CT scan was negative and there were no swollen nodes or any other complications. He visually estimated the lump to be close to 2cm. Any thoughts on this would be greatly appreciated---thx

Hi Matthew,
Welcome to OCF. Sorry for the reason why you are here. It seems like you do have a cancer diagnosis. I've never heard of someone who has a biopsy that says positive that is wrong. Much more often the case is a biopsy is done and shows negative while there is cancer.

You should be grateful your ENT has a lot of experience to probe further and very thorough until he found the cancer. Also, you are very lucky to be working with Stanford.

All in all, you are in perfect position to receive the best advise and treatment available. Stay in touch here and keep posting your progress as there are many practical tips and advice that you can get here to make the journey more comfortable.

Don

Don,

Thank you so much for the reply, it means a lot to me right now as I try to wrap my head around this situation. I knew the biopsy wouldn't lie but it was the CT scan that was a little unclear that threw me off. Perhaps the spot is small enough and just didn't show up on the scan.

Welcome Matthew. No diagnostic scan is 100% accurate nor will always pick up cancer, and depends also on the person reading, and interpreting them, and is too small, can be between the scan slicing, unidentifisble. A CT could detect cancer usually 1cm or larger, but had PET/CT, which works on glucose uptake, can pick up less than 5mm, and are more accurate in certain aspect, and each are better than the other for different reains. Only a biopsy is 100%, but then even human error can effect tests. Did they confirm HPV-16?

Good luck with your treatment planning, seeing specialists.

Thanks Paul, the printout of the biopsy said positive for p-16, I am assuming that meant the HPV 16. I think this is what the ENT verbally told me. I vaguely remembering him telling me that it would be a better prognosis. One day at a time, keeping fingers crossed until I get over to Stanford

Usually it's associated, but not all the time and/or HPV can't be found or in other cancers outside the oropharynx, and may have different prognastic factors.

http://sph.unc.edu/key-biomarker-has-new-role-in-head-and-neck-cancer-24/

Hi there and welcome I am going to second to what Paul said about he scans . This cancer can move quickly it does respond well to treatment but catching it fairly early and helps get out in front of it. Your ENT sounds very good thankfully he has pointed you in the right direction. since it sounds like your oral tongue that's involved I would say you may end up with surgery as a first line of defence - hopefully you be seen ASAP I would push push push. Hugs and take care

Matthew, welcome to OCF. At this time treatment is the same weather your cancer is HPV+ or -. From what you wrote, the tumor was too small to get picked up on the scan. This can happen when the cancer is caught early, which is great for an optimal outcome.

You have a long road ahead filled with many appointments and tests. You will meet all kinds of doctors and hopefully go for a second opinion at a comprehensive cancer center (CCC). Best to get a hearing test, dental exam with flouride trays made, full blood workup with testosterone and thyroid levels prior to beginning any treatments. If you have any teeth that wouldnt make it thru radiation then its best to get them pulled before having rads (that is if you will have rads).

Eat everything you can now. If doing rads you sense of taste will change temporarily and eating probably will become difficult, so eat now. have all your favorites and done worry about gaining a few pounds, most lose weight with OC treatments.

As far as HPV goes, there is still much that is unknown about this disease. It is known to cause not only cancer of the oropharynx but also anal, cervical as well and genital warts. If between the ages of 12 and 26, the guardisil shot is available in a series of 3 shots. Getting children vaccinated prior to them reaching sexual maturity is their best bet at being protected against these diseases. Studies are being conducted to determine if the shot would help older, already exposed patients. Also a study is being done to see if lesser treatments can be given to HPV+ OC patients as they generally respond much better to certain OC treatments than non HPV patients. There is still so much to learn about HPV.

Read and educate yourself about not just HPV but also your OC so you can be your own advocate. Its important to understand what you are facing and make good choices.

Best wishes!

Thank you so much everyone, will keep you all posted as I learn more.

Please take some time and review the private message (PM) I sent you. It contains a link that will help you make a signature. Having a signature really is important, it will help us to help you.