I am curious to know how long most of you had symptoms before you were diagnosed with your cancer? Also, what were your symptoms? It seems that most are in later stages and I'm trying to figure out if people are asymptomatic or if health care providers are not picking up on this type of cancer early on and being aggressive with evaluating symptoms.
Thanks,
nancy

Nancy,
It took me from March until November to get an accurate diagnosis. My first bio at the local hospital said no cancer. Wrong! I therefore believe that a second opinion is required and to be done at the top rated cancer hospitals. My symptom was a lump under my jaw bone that you could feel and you could move it around from the outside with your finger. There was no pain at all.
Vernon

From my experience on this site and with my own cancer it seems that cancers with Primaries in the forward part of the tongue or gums usually present themselves early with pain and are often misdiagnosed by front line doctors at first. Primaries of the BOT or Tonsils usually present themselves only after the cancer has spread to the nodes and without pain as a factor where the lump in the neck is the first symtom. Fortunately for this latter category, the cause is more often than not HPV 16 which has so far shown to be more responsive to Tx.

Usually certainly does not mean always.

Thank you David and Vernon for responding, My husband had a constant one sided sore throat for over a year with radiating ear pain for 6 mos, abnl CT scan and a ?neg biopsy and was seen by 2 different ENT's who didn't think he had cancer. This is why I'm curious about other individuals' symptoms and experiences with diagnosis. His BOT tumor was 3.6 cm when he was finally dx
I wonder how many other people's symptoms were blown off before they were finally diagnosed. The lesson I learned is get a third opinion and don't let a neg biopsy fool you.

Count me as one with symptoms that were blown off. By me and my doc.
Went to GP for an earache. He couldn't find anything wrong. He told me it was an allergy. I took psuedephed and OTC pain meds for 18 months. Thought it was everything from sinus problems to a bad tooth. Even after my lymphnodes swelled so large you could see them from across the room. No one said cancer. I was give a month of antibiotics. Sent to an ENT that agreed. Peritonsillar abcess. The ENT has since told me he had no idea until he cut into me that it was cancer. I had no idea until I went back for my recheck. Knocked me right off my feet! I really thought I was going back of a recheck of the tonsilectomy and not for test result for a biopsy!

I went for about a year with an ulcer on my tongue. I wore night guards and it never got better and finally my dentist (whom I worked for at the time) said "Suz, I think this needs to be biopsied" and off I went. At that time I never thought biopsy meant we were checking for cancer. I realize now that was dentists' fear but I didn't know it then.

So...here I am 3 years later:) Just so happy I finally found this site!

Hi Nancy:

I was diagnosed with tonsil cancer in November 2007. The cancer was discovered only after I insisted my tonsils be removed. Some time in October 2007, we had a blood pressure machine put in the breakrooms of where I worked. I was checking my blood pressure and kept getting a high pulse rate, which I had had before; one of my coworkers told me that I could check my pulse by placing a finger on each side of my throat. When I did that, I felt a swollen place, only about 3" long, under my right cheek on my neck. It wasn't hard, and had never hurt. I would have never noticed it because it wasn't even visible in the mirror. Being concerned, I went to my family doctor who said I had a sinus infection and that was what the swelling was caused from. He gave me something for the infection and told me everything was okay. After another two weeks, I still could feel the swollen place although it hadn't gotten any larger. I called the doctor and his nurse proceeded to tell me that I should just forget about it; she had the same thing all the time and to quit worrying. After another several weeks, I decided to go to an ENT doctor on my own. He had a scan done on my throat and a needle biopsy was performed on the spot that was swollen. The scan was inconclusive as to whether it was something or nothing; the needle biopsy was NEGATIVE. But, I still just didn't feel right. I'm not sure why, but I decided to get a second opinion from another ENT. He couldn't tell either, but said since my tonsils were red on that side and a little swollen, he'd recommend taking them out. I did, and sure enough, there was squamous cell cancer underneath. I believe it was also in a gland or lobe. Nevertheless, I ended up with 7 weeks of radiation, with one day each week of chemotherapy. That was quite a trip - it'll be two years in November, and thank GOD, so far all my follow-up CAT and PET scans have been clear. I do, however, suffer from many of the side effects from radiation. That is just something you have to accept. It's better than the alternative
Julieann

I had asked every Dr I saw, even in Erooms to chek my louth. I was always told, it will be OK . Just a bruise or something else. I finally gor a surgeos thaty scopes me every 3 months to check on one of his journeys downward and when I came to, he had the ball not only rolling but bouncing too. Even had my 1st appts made for me.

LOL what's a louth??

thanks for everyone's responses, it does seem that initially sxs are attributed to sinus, dental, ear infections which makes sense considering the area. What concerns me is when sxs persist and people go to health care providers and there is still such a long delay to diagnosis, especially when swollen lymph nodes are present
and there abnl or inconclusive scans. I think a major effort has to be made to educate all health and dental providers to keep oral cancer on the list of possibilities.
it's Monday morning and I'm on a roll!
have a great day everyone
Nancy

Nancy

Let me join in the chorus of having an earache misdiagnosed for over a year, so it was stage IV when they finally found it after I insisted on a CAT scan after being told it "was all in my head"
OCF has been very active in promoting early detection.
Unfortunately as I replied in a different thread, I had zero symptoms for the recurrence.

Same here. Was blown off for 4 months with "you're young, don't smoke, don't drink, it can't be anythng bad". Had a brush biopsy by ENT, was negative. Went to ER twice with pain, was told to use mouth (louth?) guard, said it could be stress-related, etc. During my routine dental appt I asked my dentist to take a look, and he sent me to the oral surgeon to be biopsied ASAP. Here I am.

I am one of the few who was diagnosed very early. I had a sinus infection and went to my primary doc. I also told him about a sore on the inside of my cheek that had been there about 2 months. My family doc told me flat out it could be cancer. He put me on antibiotics and sent me to the oral surgeon for a biopsy. The rest is history.

My family doc is the best. Before he even took a look, he said if the sore has been there that long and hasnt healed its a very good chance that its oral cancer. I wish more people had a doc like mine. My cancer was caught at Stage 1 all 3 times.