Oropharyngeal cancer diagnosis and I’m terrified. How do I stop thinking the worst?
The last two weeks have been a blur. I am 52 and started with a lump in my neck. CT revealed mass on back of my tongue and two suspected metastatic lymph nodes in my neck. Biopsy results confirmed “poorly differentiated invasive squamous cell carcinoma” and HPV 16 is “strongly positive”. Local ENT told me that the HPV result was great news. Headed to MD Anderson after Thanksgiving for 2 weeks worth of tests and consults. I’m absolutely terrified.
Here are the specifics:
- Remarkable for enlargement left oro pharyngeal palatine tonsil, focal mucosal space enhancement is rounded at 17 x 22 mm at the glossotonsillar sulcus and new, concerning for neoplasm.
- Lymph nodes are on the same side (left). Lymph nodes size: A cystic mass lies between the left sternocleidomastoid muscle and the submandibular gland, measuring up to 37 mm in AP dimension and 50 mm craniocaudad. This is most likely an enlarged cystic level 2 JD station lymph node. Smaller cystic area laterally adjacent, 9 mm. Medially there is a 9-10mm 2nd cystic focus. The left JD station lymph node is 17 mm and enlarged. No other significant adenopathy.
- No scans yet of anything lower than neck. PET scheduled next week.
I won't delude you by saying it will be easy, but there is a bright end to the tunnel ahead. What your ENT means by 'great news' is that there is about an 80% chance of long-term (10 yr) survivorship (avoiding the word 'cure' here since many are rightly sensitive to it) for oropharyngeal cancer (your kind) that is HPV positive from the 'base' (back) of tongue. See this literature published in 2020.
In addition, you are getting set up at MD Anderson, a great cancer center (I sent another patient with HPV+ HNSCC there) and keep in mind all statistics are old. There are a number of new treatments available for HPV+ patients too you may benefit from them if needed.
From the specific information, your tumor is likely to be T2 or T3 (doesn't really make a difference for staging in your situation), N2b, and M0, also written as T2-3,N2b,M0. This would translate into a Stage IVa (4a), as opposed to IVb or c. Two additional factors may influence the staging further that you will find out with the results of the pet scan 1) if there are any distant metastases (stage IVc) or if there is something called EME (extramedullary spread) of the lymph nodes (stage IVb). As previously stated, it is important to remember that stage 4 for oropharyngeal is NOT the same as for other cancers, so your outcome for Stage IVa HPV+ is still about 80% success long term. MD Anderson is doing some of the best new approaches there, and I see one that uses immunotherapy against the tumor that I think you should consider.
Do you happen to have an appointment with Dr. Maura Gillison? If not, I highly recommend adding one more to your list during the visit! She is running a study that you should consider, and find out how it compares to the standard chemo, radiation, and surgery approach. Having doctors weight in on the different options to me is always the best way to determine the best treatment. Print out this sheet and bring it with you to ask each one about it.
Jason Sager, MD
