Hello everyone, my name is Mike. I am 35 years old and live in southeastern Michigan. I was diagnosed with SCC of the tongue (moderately differentiated) on Monday 6/29/2020. I know that this isn’t common for someone my age to be diagnosed with this, as the oral surgeon that did my biopsy told me that I am the youngest person that he had to tell that they have SCC, but it is what it is.

I have a surgery date of July 14th, I still need to do my CT and PET scans, those are coming up this week. The surgeon has given me the details of what they have planned to do, remove 20-25% of my tongue, replace it with my forearm muscle and artery (crazy that they can do this), and removing my right lymph nodes (possibly my left side if the right side doesn’t look good). They didn’t mention chemo and/or radiation, I am guessing that this is determined after surgery? I didn’t go and get a second opinion as I felt comfortable with the surgeon — he heads the division for head and neck cancer surgery at the hospital I am going to and has authored books on how to do the surgery.

I am as positive as I can be dealing with this, and I’m looking forward to getting into surgery and starting the road to recovery.

If anyone has any advice for recovery I would greatly appreciate that. Maybe some item that made life easier that I should go and get beforehand.

For others that have had their forearm muscle and artery removed has it hindered the use of your arm?

Thanks and stay positive!
Mike O.

I've posted this in the past, I hope it helps. I've also sent PM.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only about 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff (CCC)

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

In some cases where they take lymph nodes they will probably do an RND, (radical neck dissection). Be prepared for a scar across your neck.

Hi Mike. I am from southwest Michigan and was diagnosed last fall with SCC (stage 4) at the age of 43. My surgery and treatment were performed in Ann Arbor at U of M's hospital. They have a Comprehensive Cancer Center (CCC) there and they specialize in treating Head and Neck cancers.

A third of my tongue was removed during surgery and reconstructed with a donor flap from my arm. I also had a modified neck dissection on the same side to remove lymph nodes from my jaw, of which one was cancerous. I spent about six days in the hospital to recover and before transferring to a rehab home for a few weeks.

What you are about to go through will be painful and tough, but you can endure and pull through it. You will likely have a temporary feeding tube in your nose after surgery for several weeks while your mouth heals, into which you will get your "food", hydration, and any medications you take. During this time you will drop weight since nothing solid is going in.

I had to have radiation and chemo because my cancer had spread into a lymph node. This took place about six weeks after surgery. I had 33 days of radiation and only 2 doses of Cisplatin chemotherapy. Mouth sores from treatment are painful. It can be grueling, but is necessary to kill off any possible remaining cancer cells left behind from surgery.

To answer your question about the forearm flap and artery removal affecting usage of the arm, for me is minimal. After a long bike ride the elbow area can get a little sore. I continue to have nerve pain along the scars, but usually only from being touched. My neck dissection scar on the other hand remains sensitive, but it has improved since surgery. I continue to rehabilitate my neck and shoulder with therapy.

Your overall health going into this ordeal will play a factor in how well you do. As you are young, you will likely be able to recover faster than others. You can do this.

Sleep will be hard to come by as you recover from surgery. Doctors, nurses, and techs will be visiting hourly to check the blood flow to your tongue flap and help clean out your mouth and trachea. So get sleep when you can get it.

Thank you for the response. Surgery is Going down on Tuesday, and to be honest, I am very happy to be going in. Thanks for the tip on sleeping, I’ll take advantage when I can. Hopeful to get out of the hospital sooner than later.
I hope that your neck and shoulder fully recovery soon. Take it easy.

Hi Mike,
I was diagnosed with CC last year, at 39. It sucked. I understand how you feel about the surgery. I was in so much pain and talking so badly that I couldn't wait to be pain and (hopefully) cancer free. The treatment and healing process is tough and slow, but your positive attitude will help massively.