Diagnosed with SCC on base of tongue

Hi @rakga, welcome to our group. The PET scan may or may not tell the oncologist much more than he/she already expects. Typically this is not a fast growing cancer however you do want to get treatment going sooner rather than later. It won't be enjoyable but it usually has good outcome. If your husband has any questions as to the treatments and recovery, please don't hesitate to ask. There are many people here who have gone through this and can help. Good healing.

Hello @rakga
I am over 7 years out from my stage IV base of tongue, throat and lymph node cancer treatments. With this said, there is hope so stay positive my friend!

I had allot of cancer and I was forced into disability which was devastating to say the least.

Feel free to message me and I can give you a list of things pertaining to my experience.

MOJO

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had 3 years of cleans scans. It's a tough disease but you folks will get thru it.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:

More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.

There is a very good chance all will be ok. I had tonsil cancer and was scared at first but as long as it hasn’t spread you are only in for an uncomfortable 3 -6 months. I did surgery and then radiation for seven weeks that I hear can be reduced to 3 weeks now. During radiation try and get a product called Mugard to protect throat from ulcers. My thought was to do surgery to get it out as fast as possible. His area may make it difficult to do surgery.

Hey @rakga. I was diagnosed with HPV16+ OSCC in March 2023 at 56 years old. Of course I was very fearful at the time. Since then I have learned that this type of cancer is very treatable and successful. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed as cancer had spread to a couple of lymph nodes and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I completed 30 rounds of Proton Radiation in July to "cleanup" and cancer that may have been left behind. I had NO chemo. As far as presurgery I don't recall doing much but waiting for the Surgery. The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) for about two weeks after surgery. I would suggest that he start doing mouth, tongue and swallowing exercises today. If He has a Speech therapist they can help you with this. As far as post op. The pain is fairly severe for one week after surgery. I had alot of mucous where you feel like you are almost drowning. It will be hard to eat and drink or sleep. Think soft foods and Boost drinks. I had pain medications which helped tremendously. As of today I would say I am about 80% back to normal . It is a SLOW climb back and you will never be quite "normal" again but you will be alive. He will have CT scans and throat scope every 3 months for a year or two to monitor any recurrence. He should ask your doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored. Good luck to your husband. It will be a journey for sure but He can do it! Stay positive.

Hi @hornb, how long ago were you diagnosed with tonsil cancer? How are you doing now?

2017. Took me about 12- 18 months to get back to normal weight and feeling. Neck still a bit stiff at times and hair on back of head still thin. Facial hair has not come back. Overall it mostly feels like I never had it as I do not think about it much and I am confident there is no return.

Hi, I'm new to the group. I have what you had, and am starting chemoradiation March 22, for 7 weeks. Your comment gave me hope. I'm so scared, but I'm strong, and healthy, and believe I can overcome this. I know radiation will be hard, but I'm determined. Keep me in your thoughts if you will. I've been having a hard time sleeping, with worrying so much. Thank you, Lisa

Hey Lisa,
I’m so sorry for your situation.
I will send you a private message

MOJO

I am a SCC base of tongue pioneer. I was diagnosed in 2006. Had 2 rounds of chemo but the worst for me was the 36 rounds of radiation. I have a lot of side effects due to the radiation-severe dysphagia, severe xerostomia, my airway continues to shrink and is now about the size of a quarter. So eating is very difficult so I now have a permanent feeding tube. I also have velopharyngeal dysfunction. I could take up a whole page discussing all the problems I have due to my treatment. And even though I had this cancer many years ago, new problems continue to surface due to the treatments. But please do not get discouraged. They have made great strides with treatment. Back when I was diagnosed, this cancer was rare. Therefore, they treated it very aggressively. They have since learned it doesn't need to be. Tell your husband to stay positive. I believe that is the biggest healer. Don't think about "the what can happen", think about the "what I'm going to do after this is over". Best of luck to you all.