Hello everyone. My journey started last November when I discovered a painless lump on the right side of my neck while shaving. My primary care doc sent me to an ENT specialist who did a physical exam on me including a scope through my nose to view my tongue and throat area (no tonsils as they were removed when I was 5). He didn't seen anything unusual and did a needle biopsy which showed negative. He prescribed anti-biotics to see if was result of infection.

We took a wait and see approach and I had two ct scans which showed a mass that did get smaller but not gone over a period of months. There was no primary cancer shown in the scans. In May we determined to have surgery to have the mass removed.

After surgery the biopsy report said it was a "Poorly differentiated (grade 3) non-keratinizing squamous cell carcinoma; basaloid type. The majority of the specimen is fibrofatty tissue with extensive reactive mixed lymphoid inflammation; clinically branchial cleft cyst.

In addition, it said the tumor was strongly positive for antibodies to cytokeratin ae 1/3, ck5, and p63 as well as HPV surrogate marker p16.

So, I had a PetScan which came back clear showing no cancer. My ENT surgeon has set up an appointment for me to have a consultation with a radiation oncologist next week.

I have done quite a bit of research about my situation both on and off this site and my dilemma is what to do as a next step. Since no primary cancer site was found or determined and I received a clear PetScan should I do nothing or should I do radiation as an added precaution.

I would appreciate and comments or recommendations.

Welcome. A brachial cyst, should be highly suspicious of HPV, as is indicated, and oropharyngeal cancer. This is sometimes missed by doctors, and just diagnosed as just a brachial left cyst, but can be both, and sometimes cancer is even missed, but good they did a biopsy, but surprised they did not inform you of this possibility. They should do another type scan in the H&N, and an endoscopy, with biopsy under anesthesia of the oropharynx identify the primary. 90% of HPV are in the oropharynx anyways, as well as 80% of the unknown primaries. This also can be an unknown primary, since the body may have fought off the HPV infection at the primary, and or died off once it metastasized to the cervical neck or too small to be picked up by the PET scan. You will probably be treated as if the primary is in the oropharynx, if not found. Having no tonsils doesn't matter, actually there are 6, and mainly those involved with HPV cancer are the palenine, and lesser the lingual tonsils, and then the BOT can also be involved. Are you at a CCC, Comprehensive Cancer Center?

Good luck.

You need to get to Moffitt and let them give you a second opinion. Do not delay. Do not get another opinion from anyone else before you see Moffitt.

I agree with David, Moffit is a top CCC where they will be more familiar with treating unusual cases. There they will give you a whole team of specialists to review your individual case.

Best wishes!

Thank you for the responses. This whole thing has been a learning experience for me. When I first had the lump on my neck I was very na�ve about all of this and was approaching it with the hope it wasn't cancer. My ENT did tell me from day one that he had to assume cancer until proven otherwise. After all that has occurred I now know much more than when I started.

After having needle biopsy that was negative and two ct scans which did not show anything that would suggest a primary or where a primary was located, the biopsy report was a shock that is was cancer with HPV involved. The Pet Scan didn't show anything but I know it is not comprehensive and what Paul says makes sense.

I have not consulted a CCC up to this point. I am going to go ahead with my scheduled appointment with Robert Boissoneault Oncology Institute located in Ocala to hear what the radiology oncologist has to say. I am very inclined to make an appointment with Moffit in Tampa for a second and most likely more comprehensive opinion as has been recommended by you all.

Thanks, Walt.

Please keep us posted.

November was a long time ago. Moffit is close. Why wait?

I really didn't get confirmation that the cyst was cancer or HPV until the surgery and biopsy done in May. My ENT surgeon wanted me wait for the PetScan a number of weeks after the surgery. Now that the PetScan didn't show any spread of cancer I am at this point. He scheduled the meeting with the Radiology Oncologist for this coming week. I am in agreement with the advice I have received here about getting a second opinion. I am contacting Moffit tomorrow morning to set up an appointment. Hopefully, between the two I will be much clearer on what course of action I will need to take. Again, thanks for the input. Walt

Let me know who you will see at Moffitt.

Hi Walter I had exact same dx as you, first they dx'd branchial cyst, fine needle came back negative when they operated to remove cyst biopsy showed it was actually cancerous lymph node, they removed eight of mine with two others involved. Mine was strain HPV 16, David is right get a second opinion, in Canada standard treatment is chemoradiation with mine they only used radiation due to size and unknown primary. They are doing some robotic surgery up here for known primary on bot which can give you option for rads later if it recurs, good luck with your journey....ken