tongue cancer

My husband had a very similar diagnosis in October 2015- SCC of the oral tongue, T1N0. The lesion was small, but it was locally invasive, poorly differentiated, and had possible perineural invasion. It was also HPV negative. He had surgery which removed the lesion with clean margins, and at the same time had a partial neck dissection which also came back clean for cancer. We had two options- wait and see and do nothing or go all in with chemo and rads and be sure. My husband was 40 at the time and in otherwise great health and we went all in. We didn’t want to wonder what if. So two years later he is cancer free and doing great. Did we need to do all that treatment? Maybe not. Maybe so. But if we hadn’t, would he be ok now? We didn’t want to take any chances with that.

Appear to offer 3 courses of action...  1)  resection of primary plus neck dissection  2) resection of primary plus sentinel node biopsy or 3) definitive radiation of primary and high risk lymph nodes.

I would seek a second opinion and specifically ask both providers how your treatment plan fits with the NCCN guidelines.

Brandon

katlou said:

Thank you for your responses

Thank you for all of your very informative responses.  To give a bit more information my cancer is HPV negative.  The second opinion doctor I will be seeing is an otololaryngologist who is a head and neck cancer specialist.  He performs cancer surgery, glossectomy, cervical node dissection, etc. and also does reconstructive surgery and he is out of one of the best hospitals in our area.  He uses advanced procedures like robotic surgery for some forms of cancer that he treats.  Had I suspected this was going to be cancer I would have probably gone to him to begin with.  The diagnosis was a total shock to me.  I have had two prior biopsies of this general area of my tongue and they were diagnosed as benign conditions and my prior ENT never suggested removing the entire lesion.  I went to my present ENT because I just wanted the entire lesion removed so I didn't have to think about it anymore and unfortunately it was too late but I have been diligent about getting biopsies done regularly.

Brandon - thank you for the NCCN guidelines.  My present ENT definitely isn't following those guidelines.  In fact all that has been done is an excisional biopsy that removed the entire cancer with clear margins, along with the ct scan. He feels this is enough and to now wait and watch.  I prefer the resection of primary plus sentinal node biopsy approach since my cancer seems to be very minimal but I will see what my new doctor has to say.  I am definitely not going to use the wait and watch approach after everything I have read and what others on discussion boards have had to say about their experiences.

I wish all of you well and continued good health.

Since HPV negative, I would be very nervous with the current recommendation. You are very lucky that you have caught this early.

Please keep us posted with the 2nd opinion

None of us are physicians and in no way should you take information on this forum and imply that your provider is doing something incorrectly.

Even within the guidelines there is room for clinical judgement.  The further I dig into them for oral cancers of the anterior tongue if your depth of invasion is less than 2mm there is an option to watch and wait.

The takeaway is that there are very specific care guidelines for all cancer types...and they should be followed unless there is good reason to not follow them...but you should be aware of how your plan either follows or deviates from those pathways.

katlou said:

I'm sorry

I apologize that it seemed like I was implying my doctor was doing something incorrectly.  I will be more careful about how I word things from now on.  I realize that a lot of people read these posts and I don't want to post information that may be incorrect. 

Actually, I am quite sure that the depth of the invasion of my cancer was less than 2mm because the tissue depth that he removed for the biopsy was 2mm and that margin was clear.  So maybe this is why he is recommending the wait and watch approach.  I will see what the doctor at my second opinion has to say. 

Thank you for pointing this out to me, Brandon.  You actually made me feel a little better by posting about the 2mm depth.

While we've all been through the ringer on here and certainly know alot about our diseases we aren't as smart as we think we are all the time! :-)  We also offer opinions and don't want to imply that we have the right answers.

Good luck and keep us updated...  We do like to help when we can. 

Brandon

Hi everyone!!! yesterday I was diagnosed with squamous carcinoma... back of the tongue. I had no symptoms except a swollen gland on the side of my neck. this was about 2cm. 

I only had this for about two weeks.. They said the primary tumor site is most likely at that right tongue base at about 2.5 cm. They said it appears to invade deeply into the posterior tongue musculature. 

Lungs, larynx, oropharynx, nasopharynx all appear normal. 

Chest and arm pits all normal........

When I talked to my primary care she classified it at a stage three because of the lymph node. She said bad news was suspected cancer, good news it was isolated no where else to be found. 

She did list the possibility of radiation, chemo and surgery were all a possibility. 

I have an appointment with the head and throat specialist this coming Tuesday. 

The first thing that ran through my head was how long do i have?? I did smoke for 35 years but have been cigarette free since 2009.... 

I thought this was caught at an early stage because my blood work three weeks ago detected nothing, I had no trouble swallowing, sore throat... etc... Just the lump in the neck.

Right now I am in limbo and hate the feeling of not knowing.. What was amazing is i had my cat scan yesterday and 90 minutes late my doctor called me. I wanted the no call

Anyway I figured i would introduce my self and look for a support group... 

Thx

again