John finished treatment for advanced tonsil cancer 5 months ago. The CT Scan 7 weeks after chemo-radiation ended showed one neck node at 1.4 cm. Two months later all nodes were normal size so no surgery.

This morning he showed me a small (1/2 cm) very soft, squishable lump slightly lower in his neck than where his cancerous lymph node had been. He still has some uneven swelling in his neck from the radiation but this seems different.

Of course we'll call the doctor first thing Monday but has anyone else had anything like this?

Mary

To anyone who read my earlier post in this thread- the small lump has now disappeared so we guess it's just the shifting around of fluids.

I know there's no roadmap for how things unfold with this disease, especially as the healing from treatment contines.

Lumps of any kind now cause instant alarm after my husband ( prior to treatment) ignored a growing lump for about 5 or 6 months.

I recently read a manual prepared for physicians in Sydney, Australia on diagnosing lumps in the neck and the starting point for adults (not children) was: all neck lumps in adults should be considered cancer until proven otherwise.

The manual also went on to say that time should not be spent observing or giving antibiotics but, instead, the focus should always be on ruling out cancer first. I wonder how many doctors or even us average citizens know that.

Mary

When I was at the recent Hopkins Head and Neck Cancer Conference (which was primarily for doctors and nurses) two top ENT surgeons and a top medical oncologist all said -- repeatedly -- that "for a patient presenting with a neck mass, it should be considered cancer unless proven otherwise." However they also said that a two-week course of antibiotics to rule out infection would not have a significant impact on diagnosis and treatment.

My husband had a neck lump in November 2003 and his doctor thought it was an infection, it went away for almost a year -- then came back in October 2004. No one thought it was cancer -- even the ENT who did an immediate incison and drainage because of its size -- because in the MRI and CT scans it looked like a cystic node, per the radiologist. However, it was and was finally dx'd several months later. Luckily for him, there had been almost no growth (comparing the two sets of MRIs and CTs) but there could well have been!

In retrospect the 2003 lump was probably the first indication, on same side and in same place. That would have meant the cancer was even then in his lymph nodes, thus treatment would have been the same, but still an earlier diagnosis would have been very beneficial. Perhaps he cancer would not have invaded the base of tongue or the second node. (His doctors speculated that he may have had this cancer 5 years or so.)

Dr. Gillison (at the same conference) who is working on human papilloma virus-16 HNC (see the OCF web site for more info on this) also spoke. She emphasized that there is a changing demographic -- younger patients, fewer of them smokers, more cancers in tonsil and base of tongue. And many patients presenting at an advanced stage with an initial neck mass as the first symptom. Many of these are HPV-16 positive, as was my husband.

Doctors should be aware that any neck lump should be an immediate red flag for further investigation!

Gail

Hi Mary,

I have had a couple of the small squishy lumps. I guess they are just fluid build up because we don't drain as well as we did due to lack of lymph nodes. My ENT told me he was looking for pea size lumps or nodules to indicate recurrance (heaven forbid). The soft squishy ones seem to go away in a couple of hours. If anything stays though, I would call the Doc ASAP.

Steve

I have for years a place in my neck that is near my original positive enlarged node. This "place" feels like a soft lump and has caused me plenty of panic attacks when I discover it. Interestingly, when I would press on it a sharp momentary pain would follow with the "lump" would deflate. I assumed it was a pocket of trapped lymph. It would come and go very infrequently. I am interested to hear that some others have had similar "things" happen. I will stress that you should have these things checked out by the pros.