I'm a healthy female (age 53). Non-smoker, rare glass of wine. Plus, active mom to two kids (ages 11 and 13). I'm a patient at Johns Hopkins in Maryland, so one of the top otolaryngology centers in the world.

My first appt (not at Johns Hopkins) was with an oral surgeon who thought the spot on tongue was an injury caused by rubbing on back tooth. Since I had no pain, and wanted to believe him - I left it at that. A few months later it started feeling slightly painful. This time I went to an ENT surgeon at John's Hopkins. He performed a biopsy which came back positive for squamous cell carcinoma. Three weeks later I'm in surgery to remove pea-size section of tongue and level 1 lymph nodes (just an added safety net, he said). All post-surgery pathology was negative for cancer. No radiation or chemo recommended.

Now, 2 years later a sore lymph node has been biopsied and found to be cancerous. Why was it even there!! Told that they don't always find every lymph node. I am scheduled for a PetScan on Friday, Dec 9, and surgeon and separate radiation oncologist appt on Monday. Surgeon is currently recommending 2nd - possibly more extensive neck dissection - followed by radiation. No chemo at this point.

Knowing what I know now I would have opted for radiation after the 1st surgery, but I guess my low risk and test results from first surgery didn't place me in that category. Second surgery is deemed riskier due to scar tissue from first, so nerve damage may be more of an issue. The first surgery was minor nerve damage with only some residual numbness under jaw.


Kathy

Welcome to OCF, Kathy! Im so sorry you have a need for our group.

Im sure it must have been quite a shock being diagnosed with cancer again. All it takes is for one microscopic cell to get missed for the cancer to start up again. How much have you found out about this new cancer? Is this considered a recurrence or is it a new cancer? You probably will get much more info at your doctors appointment on Monday. If possible take someone along with you if for nothing else but to listen to everything the doctor says. All too often during these appointments the patients ears somehow stop working. With a second set of ears along, they can help you to recall everything the doctor said. You can also ask the doctor if you can record the appointment so you can play it back later when trying to remember everything they told you. I would ask how many lymph nodes they plan on taking out and if this surgery will have permanent side effects like shoulder pain and limited range of motion. Have you considered a second opinion? If not, it probably would be a good plan to at least hear what another physician has to say.

Best wishes!!!

Hi Kathy,

I'm also a patient at Johns Hopkins - it is one of the best hospitals for H&N cancer. My background is also similar to yours, although I did not have a neck dissection but did have radiation after surgery #1. Five years later I had a recurrence - same location (3 more surgeries over the next year). I was initially treated locally, but when I had a recurrence that is when I ended at Hopkins. Before this I did go for multiple opinions at a few different hospitals, but I found Hopkins to be the best.

Wishing you the best!

Kathy -

Don't waste too much time and energy in thinking about what you think may have helped. Even with aggressive treatment in conjunction with the removal of one lymph node, (radiation / and or chemo), recurrence of SCC H&NC is possible. Conserve your energy and focus on becoming cancer free.

Also I think the cause of the cancer is somewhat irrelevant, at least on this forum. Like you, I was a social drinker, non-smoker, non-HPV, athletic and active when first diagnosed. We fall into the 5 to 7% of patients that have no defined link or listed as genetic causation.

HNC is a viscous little cancer and will take a lot of effort on your part to get through the treatments. your oncology team should be able to help you with any issues that you encounter along the way. Trust them, but ready to question them as well.

Good Luck

I was treated at JH. Harry Quon is/was my Rad Onc. Best there is as well as the rest of my team even though they've moved on. Sorry to hear about this but you're in the best hands around and it sounds like they caught it early.

Have faith in your team. My team at JH saved my life and I was Stage IV!

Positive thoughts