I have found this forum online recently. I'm 58, casual drinker, never smoker. I'm currently in treatment at a CCC in California. Right now, the docs cannot find the primary. The cancer was found due to an enlarged lymph node near the jaw line. They've done the PET scan, and MRI, and still can't find it. They say it's called an occult primary. The oncologist thinks it's caused by some head or neck primary.

I've been doing some research online, and have been putting things together. I've had my tonsils removed a long time ago. I've recently heard about HPV causing oral cancer. Has anyone heard of people with tonsillectomies getting tonsilar cancer? The reason why I ask is, sometime ago I knew a nurse that had what essentially was ovarian cancer. The odd thing was, she had her ovaries removed a long time ago. It turns out, even though they were removed, there's still a slim chance that the cell linings could still be there to form ovarian cancer. It sounds alien to me. Has anyone heard about anything like this for the tonsils?

Even when the tonsil is removed earlier in life, they never get all of it, and in many people tonsillar tissue has been shown to grow back. At Johns Hopkins they are doing prophylactic bilateral tonsillectomies on patients with a positive cervical node and what appears to be a completely occult oral/oropharyngeal cavity. In 70 % of those patients they are finding positive SCC in one of the tonsils. This philosophy is spreading to other centers. Food for thought.

Sorry to welcome you.

Likewise I had a jawline lymph node involved with my Occult Primary.

Since your tonsils were removed, your Primary is likely elsewhere in you oropharynx region. I know base-of-tongue is often mentioned as a possibility for a near microscopic size tumor.

For sure you want them to do everything possible to try and find your Primary. These days it is very rare for a CCC team to not find it.

In my case, in addition to the PET/CT and several scope session (one while I was in surgery for my neck dissection and tonsillectomy) they tried an ultra HiRes CT scanner, but no luck.

If they can't find it they will likely have to blast a lot more real estate with a lot more with Radiation.

Have you been tested for HPV? If not I would ask them to do it. They either have testing ability in house or they will send your slides to a recognized testing site, Johns Hopkins being just one of a growing list.

I tested + for HPV and like you I only had a swollen node in my neck. Turned out to be 2 but Moffitt put me under and found my Primary at my BOT (Base of Tongue) by taking a biopsy of that suspected area. Moffitt was determined to find my Primary and was prepared to take several biopsies if need be. Luckily for me the BOT was their first stop. Finding the Primary gives them a more precise targeted area to concentrate the radiation.

BTW there is now a ton of information on HPV's link to Oral Cancer (just click on HPV), unlike 2 years ago when I fought the battle to identify what was trying to kill me. For instance over 70% of all new SSC originating in the Oropharynx region is now associated with HPV and with the decline in smoking habits may one day surpass tobacco as the leading cause of OC.

I'm going to stop lurking long enough to ask:
How swollen does a node have to be to be alarming? I've had constant swollen nodes on one side for some time. Doctor says they are normal enough size and moveable, some people always have swollen nodes. I'm being treated for acid reflux and my tonsils, especially on that side, always look red and irritated; they're also very large. One dentist suggested a tonsillectomy to help me breathe easier (although that's really not a big problem). The ENT said he would remove my tonsils and test if I wish but that it's an awful surgery for an adult. I also have had HPV for a long time (probably low-risk), so that just adds a little to my concerns. Any thoughts?

SABW,

The smallest bit of a "maybe" is just too dangerous to brush away. Even if it's probably not cancer, it's so very much better to make certain it's not than to find out later that it is.

I don't know if you need the tonsillectomy, or if a biopsy would do it - but then you have those swollen nodes, too. And with the HPV thrown into the mix, I would definitely suggest that waiting & seeing are the only way NOT way to go.

Lani

SABW- I had my tonsils removed when I was 27. It is a hellish operation butI would go through it again to make sure it isn't cancer. Please get a second opinion-there are many on this board who have been misdiagnosed, my husband being one of them.

Sue

Hey David,

70% of all new cases? Where did you read that??

Hey SABW, i'm currently going through the same exact thing as you, except my lymph nodes feel normal. I did an upper GI series that came back negative for acid reflux, and I really doubt I have that. They gave me some medications to try for acid reflux, and it didn't really make things better, except it made my stomach feel a bit more settled. I'm seeing another ENT this Friday to figure this out.

Thanks all, for the advice. If anything comes of it, I will let you know. My next appt is the end of the month. Interesting, my ENT didn't suggest a GI workup, nor any specific test at all for the reflux. I will ask about that too.
Stay healthy, all of you.

Like Brian said, with an Occult Primary the tonsils go -- "prophylactic bilateral tonsillectomies". This is NCCN treatment guidelines that NCI and CoC Cancer Centers should be adhering closely to.

By what my RO said, when they took mine out they made sure they got all the real estate -- plus.

But, on the upside I had a two and half day hospital stay which allowed them to get on top of my pain management so I never really had a bad go of it.

Like David I had BOT Biopsies. I was told biopsies can easily miss very small Primaries, particularly if they are deep and/or there are no visual tissue abnormalities.

SABW,
Likewise I have always had problems with swollen nodes and tonsils, but I read where a lymph node should be checked if it stays swollen for more than a week for no reason (no flu or cold).

My visible SCC node was also alway loose, but it was hard with no feeling. If there is any doubt I would ask about having a Needle Biopsy.

I can't remember which particular study or paper I read that statistic from but that 70% has stuck with me. Remember I said 70% of the new SCC cases in the Oropharynx region (BOT, Tonsils, etc) not all new OC cases. I also remember one study profiling the "typical" HPV candidate as white male, college educated, non smoker, income > $50,000, BOT or tonsil primary with nodal involvement. That particular study was released over a year ago and as with everything under constant query, newer studies may change previous understandings. I'm pretty sure Brian has posted all creditable studies on HPV so read away.