Hello everyone,

I am currently undiagnosed, but I have surgery scheduled to remove a 7mm hard lymph node next week. My story so far, about a year ago, I felt a small pea sized hard cyst-like thing on my right neck. There was a corresponding small bump, harder to feel though, on the left. I went to see an ENT who felt all of my lymph nodes in my neck, and too small to even be FNA biopsied. He said it was nothing, and that even all of his colleagues in their head/neck surgery practice would disregard it as so. It was smaller than 1 cm, moveable, and spongy (the later of which I highly disagreed). He said to come back a few months later if it got bigger. It didn't, and I never returned.

Fast forward a few months ago, and I feel it again and it's still there, about the same size maybe a tad bigger, but there is a new extremely small sized lump above it. On the other side, the lymph node that I also noticed has gotten bigger. I was pretty shocked when I was able to grab the whole thing between my finger and thumb, and roll it around. It felt like a marble. Even the more shocking thing is that I also noticed more recently a bunch of hard lymph nodes under my chin. This is not looking good.

I find another ENT and schedule a visit. He ultrasounds everything, and says the one I noticed a year ago is a lymph node, 7 mm, but moveable and he thinks it's spongy (I don't understand why these guys dont grab them between the skin instead of pushing them against SPONGY muscle). The one on the other side, though, is 9 mm. He also finds a bunch of superficial lymph nodes under my chin. He thinks they are nothing, and that we should play the wait and see game in 3 months. He says the lymph nodes have sharp defined borders, are smaller than 1 cm, and feel spongy and moveable. He thinks we will just be biopsying lymph tissue. I leave feeling a bit perplexed and look up more info.

So, I found a study in a medical journal that shows that in their sample, contrary to wide held beliefs, sharply defined lymph nodes are much more likely to be metastatic cancer instead of reactive lymph nodes. Only in much advanced stages, when the cancer is beginning to invade surrounding tissue, does the fuzzy border start to appear. Also, the 1 cm diagnostic criteria is often not a good indicator of cancerous lymph nodes. So, I schedule ANOTHER appt with another ENT.

After some discussion, he thinks I should just have an excisional biopsy of the 7 mm lymph node. He did a scope, found nothing, said everything looks normal. He also said that usually, metastatic tonsilar and BOT cancers present with one or two very large lymph nodes. He says I have several diffuse smaller ones. Personally, I've read many stories of people who have had visible tongue cancers, and several small metastatic lymph nodes found during neck dissections. I don't mention anything since he thinks it's best if we remove one and get pathology on it.

Personally, I think this is cancer. It's definitely not cysts, since we already know they are lymph nodes via ultrasound. It's not an infection since I've taken antibiotics a year ago for this and it did nothing. I also know that I have oncogenic HPV, which is a well known etiology. I just find it odd that it has been a year since I found this little hard ball in my neck, and it hasn't really gotten any bigger; or that any visible oral symptoms have shown; or any of the common head and neck cancer symptoms have appeared (ear pain, bleeding, nasal fullness, asymmetry). I am actually kind of pissed that I didn't push for a biopsy earlier.

Oh well, we'll see by the end of the next week. Sorry for the rant.

Welcome to OCF,

It has been a long journey so far but it seems the biopsy next week will determine what is going on with far greater certainty. Remember that you have been seen by several ENTs and collectively they probably have been in university more years than you have been alive so you really can't discount all their opinions. Hang in there, the wait will be over soon; Keep us posted. don

As Don said, Welcome...

It's actually encouraging that 3 ENTs have essentially given you the all clear. One doing some insurance work for good measure.

The fact that it hasn't grown and no other visible or more common symptoms have manifested themselves bodes well.

Good luck

"T"

Welcome to OCF!

The only way to tell for certain what is going on is thru a biopsy. Sooner or later (no matter which path you take), the a sample of the tissue will be sent out to get checked to find out what you have.

Best wishes!

So, it's confirmed. I have SCC mets to the right side of the neck. Most probable that it's to both sides and under my chin, since I have hard lymph nodes every where. It might have even metastasized further.

Trying to figure out where to go. Getting my case forwarded to Stanford. Oh well, I guess there goes school and all that. I might not even be alive in a year. Geezus, I can't believe I've been misdiagnosed for the past year!

I know how disappointing, frustrated, and scared you must feel right now.

You have an excellent chance of doing very well based on what you have offered so far. You are young, HPV+, tumors are still relatively small and slow growing, and doctors who are moving forward with you.

Assume you are otherwise healthy and that fact will not create compromises in your therapies, you will get the best and full therapies designed for your case.

I know worrying for a year is a big factor, you have caught this still quite early and have an excellent prognosis. HPV+ SCC oral cancers respond very well to treatment.

best to you, don

I don't see where anyone said this was HPV+ SCC. Did I miss something?

Did they say where your Primary is/was?

When will you see someone from Stanford?

Thanks, Don. You seem like a positive, upbeat kinda guy. Best to you too.

davidcpa, I don't know if it's HPV related or not. They haven't said. All I know is that it's SCC. All I know is that I DO have oncogenic HPV (which strain, I don't know), so I'm not surprised if it's related to that. I told the ENT to transfer my case to Stanford, since from what I've read on here I should really go to a NCI CCC. So far, no primary. The ENT scoped me and couldn't see ANYTHING. A few others (ENT) looked in there too, and said the same. I myself have looked at my mouth MANY times, pulling out my tongue so I can see all the way back, looked at the tonsils, everything looks "normal". However, I know a good percentage of tonsil cancers can be subclinical. I was told by Dr. Gillison that about 30% of tonsil cancers are subclinical. So, maybe my primary is lurking around where it can't be seen. However, I figured after a year of having a positive MET lymph node, the primary WOULD have grown and become visible by then. I dunno.

I don't know about Stanford right now. Haven't heard from them yet. My doctor just forward my case to their ENT oncology department. Waiting for appt.

Hi, I'm so sorry about your diagnosis. Thank heaven you're doing such a great job taking care of yourself, you've had to be quite persistent about it too! Your diligence is another factor in your favor here.

CCCs are excellent choices, but not always your best choice. If you live closer to a large teaching hospital that has a dedicated HNC team, consider getting a second opinion there. Studies posted on this site show better outcomes at large academic hospitals, not specifically CCCs. You may even find, as I did, that the closer institution is on the cusp of CCC designation, if that matters to you.

For some people relying on a more distant hospital can be a significant added burden for you, your family and your finances. I would never have guessed the number of appointments and support treatment entails; for example, I have 21 medical appointments over the next two weeks!

Please also choose your own docs, not just whomever comes up in the rotation when you call. I looked at multiple doctors' published research, roles in professional groups and references from other docs to handpick my team.

My point is to choose your medical institution carefully, and rely on more than just the CCC "brand" to make sure you get the best care possible when all factors are considered.

Good luck and keep us posted!

Stanford is an excellent choice for many reasons. In particular, they offer training to physical therapists and athletic trainers to deal specifically with cancer survivors. The Livestrong Foundation program, Livestrong at the Y, gave grants to YMCA's to help with the recovery process after cancer.

If you have the luxury of choosing where you go finding an aftercare program is very important too. The Livestrong Centers of Excellence centers are very good choices. I know of Denver and Ohio State but not many others.

In the beginning, cancer is the easy part of this. Choose wisely based on outcomes and that may continue. Being at an NCCN institution would be my first choice, NCI institution would be my second. I chose a place well connected to MD Anderson and it is now an NCI institution. I clearly see how they could have helped me more, after treatment. The treatment is going to be similar most places but the real value is after treatment.

Ed