Having just been diagnosed with SCC of the tongue in Feb, 2004,I am glad I found this site. So many questions, so little time to ask the right sources. I had a biopsy of a white bump on underside of my tongue was told 1 week later "Sorry it is Cancer." The next week I was relayed to a head & neck surgeon who scoped me & pronounced me otherwise cancer free and said "See you March 2 for surgery." Between this time & my surgery I had nicotine overdose from the patch (yes I quit immediately after 24 years of smoking 10-20 daily!) loss of balance(related to ear pain perhaps?)and generally felt unwell enough to visit a hospital where I received CT scan, chest X-rays and fantastic care from informative Doctors who then also pronounced me "otherwise cancer free." One Dr. was concerned enough with swollen lymph nodes on my right side of neck to put this in her reports which were going to my H & N Surgeon & advised me to ask him about these & possibly remove during Partial glossectomy surgery. My H & N surgeon said "You are allowed to be paranoid, but I am not going to remove the swollen lymph nodes." My partial glossectomy was successful but I still dont know what Stage I am (or was), or what well defined SCC means, or why I still have swollen nodules on right side of my neck after course of antibiotics post my March 2nd surgery, my next visit isnt scheduled until June & I am uncomfortable with my ignorance as the bump started back in late 2002, early 2003 without diagnosis until Feb 2004..any suggestions? Some of your comments seem most inspiring I will post my pics later. Thanks

Hello Maran, and welcome!

I am not a doctor but to me you need a second (or third) opinion. While your doctor might be right, it is your life on the line here. A biopsy of at least some of those enlarged nodes would be cheap insurance. Too many people visiting here have been treated incompletely the first time around.

You didn't mention the experience level of your doctor, or if you were treated at a large comprehensive cancer center. Getting a second opinion is important not paranoid.

Take care and keep us posted.

P.S. If you need to educate your doctor more about paranoia, tell him/her you know someone who would have been treated 5 months sooner if the doctor wasn't inclined to blow a lump in the neck off. That would be ME! Tell her/him all about the paranoid thoughts my 3 sons had about loosing their father to cancer. Which, since my Life insurance agent still laughs at me when I call to UP my coverage, is still a possibility. For that matter give him/her this web site so I can tell the story directly.

Oh yes, doc's can get in denial big time too. Both the ENT and the Oncologist were in denial about the swollen node on my neck that showed up opposite side, about 2 months after end of radiation on first side. Finally, second monthly follow up in and saw a different head and neck guy, he suggested follow up PET/CT, actually about a month and a half early. Node shows up as "hot" on the CT, and the normal ENT and Oncologist still in denial, give me antibiotics and re-do the test a month later. STILL shows up hot, so they do the needle biopsy. Shows up positive, the rest is history.

It's no big deal to have an ultrasound guided needle biopsy, in the right hands with an experienced doc it can be good at finding out what's going on. There is a chance that they miss the cancerous cells with the needle, but cancer on the tongue, and a lump on the neck is awful suspicious to me.

Otherwise, I have to agree with Mark, get a third opinion, these two guys really don't know anything more definate than you do at this point, without a pathology report of some sort.

Good luck.
Bob

Absolutely get another opinion. The most likely place for the cancer to spread is your neck, or so I'm told by my surgeon. Sono-needle guided biopsy stings a bit, but to get any reassurance would be worth the pain.

Keep us posted.
Lynn

I am so scared. All of you are so brave. I have a small red circular(looks like blood filled) growth on the left side of my tongue. I have had it for a couple of months. The Hygenist wanted the Dentist to look at it but she was on vacation. The MD looked at it today and said it's probably nothing but I should have a bioposy. I am very scared. Any advice?

Hi Crystal, try not to be scared (easier said than done) but definitely get the biopsy. I don't know if this will help but my tumor was on the side of my tongue and I had a white spot rather than red. Get the biopsy and go from there, Good Luck and God Bless You, Carol

It's not cancer until the pathology report says so. Try not to worry!!!

Crystal,
Stop fooling with unqualified doctors or dentists and get a referal to a ENT or a head & neck surgeon (preferably ones with cancer treatment experience). Many of us wasted precious time with misdiagnosis. Diseases of the head and neck are a specialty.

Thank-you all so much! I have an appointment tomorrow. It will be comforting to hear it may be nothing, but I want to be assured it's nothing. I guess an ENT is the only way to go!!

Congratulations! You made the appointment, Crystal. I know how hard that was. Remember, it isn't cancer til pathology says it is then it is just one day at a time.

we have a thread diversion going on here, Maran started this post thread. :rolleyes:

Crystal, please start a new subject when you have a comment or question that is a new subject. You will get more attention for your question that way. Don't worry that you broke any rules

Sorry about the thread diversion. I am new and never did this before. Thanks for pointing it out

Hi Crystal....

Best of luck with your biopsy. I see you live in Wells. Maine is my favorite place in the country. My family is from Maine originally.

Khaja

Well thank you all for the encouragement! I am unsure where to post this but..because of your advice..thanks Lynn,Mark & Bob I have successfully persuaded my Head & Neck Surgeon to get me in for a needle biopsy this Friday! I am releived;for one to be putting our minds at ease (I am a mother of three, happily partnered and not quite 40) secondly to become more educated, informed and active in this passive role I have been playing of Cancer patient. I always used to say "Don't let anything but Fear & Common sense get in your way".....since my diagnosis I won't even let Fear ever get in my way again. My thoughts & prayers go out to you all.

I went to my family doctor plus others for 7 months to question a lymph node swollen the size of my thumb under my left jaw. I finally got a referral to a plastic surgeon because nobody else would remove it due to all the nerves in the neck and face. The plastic surgeon wanted and ENT workup for a second opinion and as luck had it, my wife was there, too. I asked her what she thought, she said...take it out. I said, there's your second opinion. Everything fell in place and two days later I woke up...with the darn thing still in there. It was so puss-filled and infected the doctor thought it was tuberculosis so he took some out and stitched me back up because it was hard to see where the chain really ended. I went home Friday thinking I was going to prepare myself for a year of antibiotic cocktails to treat TB. Monday I got a phone call that I had metastatic SCC in the lymph node. I have now learned that 90% of the time you have a swollen lymph node for very long, it is cancer. I lived through the treatment and 6 months out...cancer free. The ENT did not do the neck dissection because he believes my stage of cancer does not indicate an automatic neck dissection and the operation is my last defense because of the amount of radiation I had. Is a second opinion worthwhile? You bet it is and I wish I had pushed harder for 7 months than I did, even though the cancer is probably 1-2 years building in my body. I got three opinions before the treatment and one told me he uses my doctor for his second opinions and one said he could take care of it on an outpatient visit. We'll never know which one was right but I know which one I believed in!

Ed

Hi Ed,
Where was the primary?

Ed,your story brought my memory back to yr 2001 when I discovered a swollen lymph node round the neck. It grew from the size of a pea to that of a goose egg within a very short period. In view of my healthy life habits, my ENT also suggested tuberculosis and I was prepared for 6 months' antibiotics. Of course I was wrong and the rest is history. Like most of you here, I went for second and third opinion trying to seek the best option plan. It was hard time making the final decision. I am glad today that I have made the right one. I was also worried about time delay and it was my wish that the treatment could begin the next day I was diagnosed but my oncologist said that the cancer has been in my body for a long time (could be over years) already and the waiting of 2 to 3 weeks didn't have much impact on the status. So I allowed myself to seek more opinions!
Ed, my stage of cancer is T2N3M0 and I wonder why yours is a M1 if it is just a spread to the lymph node under your jaw?

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi I have never posted here before, I just log on and read, but this really caught my attention. I had cancer on my tongue in 2001 my ENT told me at
the time it was small and I could have surgery and
no treatment. We did the surgery the very next week I had swollen nodes that he told me not to worry about, but he needed to go back in my tongue and remove more. At that time I told him to please go in my neck, I just had a bad feeling about it. He did and removed 5 nodes 3 out of 5 had cancer. I did the treatments and this June will be 3 years clean. You need to also be involved in your treatment, and still wonder at what stage would the cancer in my neck have been found if I didn't put my foot down. My doctor even tells me I saved myself. I try to be proactive not reactive. At this time I have no regrets. I wish you the very best!!!

Gary,

My primary was base of tongue.

Karen,

I had two lymph nodes affected and the doctor stage as distant for whatever reason. I think it is close enough to the tongue to be "near".

Ed