Squamous cell throat cancer

Thank you! We was hoping the surgery would be enough, but after finding in lymph nodes radiation is what they suggest now. That part is making me very nervous.

11 years ago it just took one phone call to set up an appointment with Mayo ENT for my cancer. There is a lot of work arranging all your scans and medical information to be sent to Mayo. I believe a referral from your doctor can expedite the situation. Video visits are another option but you must submit all your information for these as well. I think a second opinion is always valuable to know you are heading in the right direction with your treatment. But you have received care at a highly rated cancer center and if you are comfortable with your doctors and their advice, just ask the question if the radiation and aftercare closer to home will be of the same quality as they can provide. Good luck to you.

I just had surgery at Barnes in St Louis MO. for my throat. While in there they removed some of my lymph nodes and found the cancer was in 2 of them. They are suggesting radiation as the next step. This will be set up at a place closer to me. I'm wondering do I need another opinion and how hard to get get somewhere like Mayo?

Sue, thank you so very much for all this information. Thank you for telling me you and your dads story and I’m happy to hear you are well. I will surely do my research for him ❤️🙏

Hello jenhope and I am sorry your brother is facing this. I have metastatic SCC and it has been 10 years since my first surgery. While mine began in my ear, my father had oral SCC back in the early 90s. I know a few people with tonsillar SCC due to HPV. Surgery is sometimes an option, and radiation with or without chemo is often used, especially with lymphovascular invasion. HPV associated tumors are more responsive to radiation than nonHPV. Radiation is tough and sometimes a feeding tube is needed but we all get through it and it is worth it for positive results. One acquaintance who declined radiation due to side effects was still battling it years later when it continued on in his lymphatics. There are also now immunotherapies approved for use for H&N SCC that were not available 10 years ago. I am on Libtayo infusions every 6 weeks for 2 years now and my last metastasis has disappeared. I am tolerating it very well. I can't emphasize enough about getting a second opinion at a referral center or large teaching hospital. He wants the most up to date treatment, not just the standard of care. My cancer surgeries and followup care has all been at Mayo Clinic Rochester MN, with my radiation and chemo at University of Michigan closer to home. When I asked my Mayo radiation oncologist if radiation was equal wherever it is given he said no, that it depends on the skills of the doctors designing the treatment plan. He recommended UM for their world renowned head and neck radiation oncologist. Insurance often covers a second opinion so don't be afraid to travel for it. We continue to drive 10 hours each way for what I consider the best of care at Mayo Clinic. A couple of books that have helped me to keep a positive attitude: How Not to be My Patient by Ed Creagan MD, a Mayo palliative care doctor, and Radical Remission- Surviving Cancer Against All Odds by Kelly Turner. Lots of optimism and suggestions for a healthier lifestyle in both books. Best of luck to you both. Caregiving is a tough job so it is good to educate yourself and be prepared. This Connect site can be so helpful.

Thank you so much

Welcome @jenhope. I know this is frightening. You must be very worried about your brother.

I moved your message to this existing discussion in the Head & Neck Cancer support group (https://connect.mayoclinic.org/group/head-neck-cancer/)
- Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/

I did this so you can read the previous helpful posts and connect with other who have been there like @fwpoole @cooper12345 @rwdow @leelee70 @sepdvm @hrhwilliam @michael3319 and more.

Jen, as you begin your research into what this diagnosis means and how you can support your brother, what questions would you like to ask?

Hello, my brother of 59 years old has been diagnosed today with squamous cell Carcinoma possible lymphovascular
Lession present - tumor positive for P16. The lump in his throat/neck is quite big and has been there for over a year now but in past few months has grown substantially. I just started my research in this and his doctor will speak with him later in the week to let him now how he thinks he should be treated. Has anyone on here have any information on this or been treated or know someone who has. Thank you in advance for any information

Hi, I was diagnosed with HPVp16 of an Unknown Site on 4 Jan, 2017. Simply stated, they believed the cancer site was back and under my tongue area. Thus, treatment would be focused on the left side of my head. Diagnosis was made based on an evaluation of 31 lyme nodes which were removed. It was determined that the cancer, from the unknown site, had traveled to the first 2 nodes, one u under my left ear and the other under my left clavicle.Further, that it had not spread outside of those 2 nodes. Surgery NOT recommended but radiation, with a higher dosage, was with the UW-Madison, WI Cancer Team. Treatment began on 26 Jan, 2017 and ended 25 March, 2017 (35 treatments).
Recovery process included feeding tube (best decision or I would have starved to death). Still, I loss 65 lbs but had strength due to the high protein drink. I COULDN'T EAT! Removal of the tube felt like a quick, hard and sudden stomach punch when they removed the tube port. Mask/face cradle was a necessary evil but without it, I wouldn't be sending this message. My only support team came from the VA nursing staff, my radiation oncologist and most importantly GOD! Without them, I had no one. I highly recommend you have a team of supporters because in the first 9-12 months, the ride has many bumps in the road. Thanks to my team, I had someone to talk to. Dry mouth was TERRIBLE because my saliva glands stopped producing any saliva. Fact is, I would never get back my full salvia but, I would say I have 60% back during the day but waking up, I have 0%. I just LIVE with it. It has been 5 plus yrs with no evidence of reoccurrence. I see my Oncologist and ENT on a rotating 6 months schedule. That way, I have 2 sets of professional eyes evaluating my throat. They say 1 year and I said no! It is my body and they work for me. They have no problem with that approach.
In sum, i suggest a 2nd opinion unless it will take a lot of time. I believe waiting will only give the cancer cells more time to metastasize which can be a roll of the dice. For me, it was my best informed decision to do what I did. If I
hadn't removed the cancer cells, I would be dead today. Good Luck! You can get through it if you want to. God Bless!

Feeding tube is an excellent idea and he will learn quickly to deal with it. The alternative is to slowly starve as eating will not be a good experience after a couple weeks.
"Difficult and unpleasant", his handlers are being honest with him. Many of us on this site have been through "difficult and unpleasant" so if he feels the need for help or encouragement, please get him connected with us or others. It is not an easy path but it is the right path.
Courage! This may be one of the toughest battles he will face in his life but he will come through most likely. The alternative is to search for a nice place to be laid to rest. But whilst in this battle and the weeks and months to follow, I think as most can agree that this battle will make him stronger, appreciative of life more, and be grateful to those around him.
He may never get back to "normal" but he will have a new normal and life can be fine with a new normal. Let's get through the hard part first, the treatment. After radiation he most likely will continue to go downhill for a couple of weeks and then slowly, bit by bit, recovery begins. He will complain. He will fuss. And if he is human he will cry. But giving up is not an option.
Good luck to him. We are here. I'm twenty-one years out from my cancer and two years since my last cancer related repair. If I needed to go through that hell again I would. I'd cry. I'd fuss, but I would fight. God be with you both.