Hi all,
I am a new member.

Background:
Upper respiratory infection at New Year. Had a left cervical lymph node that would not reduce in size after a course of antibiotics.

Referring to ENT who diagnosed 2nd branchial cleft cyst. Had ultrasound, MRI with contrast and fine needle aspiration. "Cyst" was removed 3/6 and on 3/7 diagnosed with P16 positive SCC.

Biopsy inpatient laryngoscopy on 3/16. All samples were benign. Occult primary. PET/CT showed no activity other than the area of the neck healing from the node removal.

Referred to Stanford and will have TORS on 5/9 - palantine tonsil removal and left back of tongue denuded. If primary can be found we can reduce radiation volume.

So glad I found this website. Look forward to your insight and support. I have a lot of anxiety about not being able to work and radiation fatigue. Hope people can share their experiences with me.

Thank you,
Stef
(Typing on phone apologies for any typos)

Welcome to OCF, Steph. You have found the very bast place for info and support.

Hopefully you will be one of the lucky ones who sails right thru rads with barely a side effect. The people I see who do that are the ones who focus on what is most important.... their intake. Every single day you need to hit the bare minimums of taking in 2500 calories and 48-64 oz of water. This should continue until at the very least you hit the year anniversary post rads. Starting right away, eat all your favorite foods and have dessert too. You definitely do not want to go into this with cravings. Your sense of taste will change and your ability to swallow will also be affected by rads. Its only temporary but when going thru rads, it can feel like its forever until you can eat normally again, so eat now.

Most patients are able to continue working at least thru the first few weeks of rads. Of course this depends alot on what type of work you do. When going thru rads you will become susceptible to picking up the most minor illnesses quite easily. But a mild common cold can make someone who's immune system is compromised very ill. Its best to pay attention to avoid crowds, frequently wash your hands, use hand sanitizer often and avoid any situation that brings you in contact with young children (usually walking germ factories) or anyone who is sick. Some (not common, maybe only 10%) patients have worked part time thru their entire treatment and recovery while others have more intense reactions to rads and have bothersome side effects in the first week or two. Other patients have flexible jobs where they can work at their leisure from home. Many, many options are available to patients when going thru rads. I suggest playing it by ear as you do not know how rads will affect you. Rads gets progressively more difficult as treatments continue. It continues working well after the treatments stop. The first few weeks after treatments end are usually the most challenging.

Line up helpers. You may be on strong pain meds which make you tired and most find they are unable to drive. Call the American Cancer Society to see if there are volunteer drivers available to help get you to your treatments. Many patients are ok at least the first 2 weeks to drive themselves, some make it thru the 4th week but very few can drive thru the entire 6 or 7 weeks of treatments. Im hoping you have caregivers with you to help take care of you while your going thru this. If not start lining up those you are the closest with to help out. Theres a million small things that can be done to help you get thru this easier.

Stick with us and we will help get you thru the upcoming appointments, treatments and recovery. Its not easy but we have been there and know all the little tricks to make it as easy as possible. Read and absorb as much as possible (main OCF site has TONS of info) to make yourself the very strongest advocate you can be. Stop in often, ask questions and know we are in your corner.

Best wishes!!!

Hi Stef.... Christine has great advice! As far as working through rads, I am on week 3 and not doing too bad. Work is really on how you feel everyday. I am still doing 40 hours. My short day is Thursday due to chemo and rads. You may also want to consider a PEG tube to be safe. It will help you get nourishment. I am positive everyday and I am agressive in my fight. Develop a good support system!

Thank you so much. This was very helpful.

I do have someone at home who can help and I have a good group of friends. Will be sure to not be shy and ask for help.

Swallowing has changed somewhat; I need to drink water with my food. I guess it's good practice!

I read your profile - wow, you are an amazing fighter. It's inspiring. Thank you for sharing your knowledge

Thank you CougarDad! Wishing you all the best in your treatment. I tend to be positive, too and want to blast this cancer wherever it may be! Thank you for sharing your personal experience.

I would just like to add my welcome to ChristineB and Courgardad's. Sorry you had to join our circle of friends but everyone here has been through the cancer journey in one capacity or another; we understand what you're going through.

My husband's cancer also manifested itself initially as swollen lymph nodes and mouth ulcers. He was given antibiotics, the swelling went down. SIx month later, it came back and we were referred to the hospital where he had a quadroscopy and cancer at the base of tongue, P16 positive. I can never shake the thought that the ENT should have investigated more carefully the first time the swelling appeared. We were traveling in China and he assumed that the water was polluted. I'm glad your doctors acted more decisively. Hoping for the best outcome for you in your case.

Hello Stef!

Welcome to OCF! 👋 (Waving to you)

I'm a newborn here too. Just a little over a week old but have found this site to be an excellent resource for information and life experiences.

Deb

Thank you for the warm welcome, Deb!

Thank you gmcraft - I am so sorry that the ENT was not more aggressive in finding a source. My ENT wanted me to wait on surgery until summer or Christmas vacation but I insisted - feel lucky that I did.

I am sorry for the loss of your husband. Thank you for welcome and good wishes.

Stef, adding my welcome. You've come to the right place for help and camaraderie, and you're now a part of our family!

Your story is similar to my own and I'm sure with your great attitude you'll get through treatment with flying colors. I too was diagnosed with a branchial cleft cyst. The first time they did a FNA it came up benign; it was only after removal that it tested positive for SCC.

The notion of a PEG isn't a bad one. I found it incredibly difficult to swallow even water after a couple of weeks of rads. I got to the end, but on reflection wish I'd had one put in. That is, my RO told me the treatment was tough either way but that I could get through it without. And I did. But it wasn't easy.

I also found that the radiation did me in for work. Luckily as a freelance writer I could just take a break. After a few weeks I found I didn't have the energy to sit up for more than 10 minutes at a time, and it took a few months afterward for me to regain my normal energy levels.

Please ask any and all questions here - it's a good bet that someone will have gone through it and offer useful suggestions.

Courage!

Welcome Stef! Glad you found us. People here can offer great support and advice as well as compassion.

Doctors told me I most likely had a branchial cleft cyst for close to 2 months before a surgeon diagnosed me with stage 4 BOT SSC. A real kick in the head but came through 8 weeks of treatment with positive "results."

The ability to keep working varies with each individual as well as the type of work you do. My work requires I drive a lot and I started feeling lightheaded and dizzy about a week into treatments from low blood pressure. I figured getting into an accident trying to drive would be a little anti productive so I hung up the keys. I also had a hard time concentrating and it would take me twice as long to write a report and I was worried about making mistakes that could impact on my professional license.

In the end I decided to stop working and concentrate on getting better. Being a bit of a workaholic this wasn't easy but I put all of my efforts into getting better and decided this was going to be my "job" for the next few months.

I don't regret my decision as beating cancer, especially this cancer, takes everything you've got. I have been back to work for a while now and performing just as well as before.

Just listen to what your body is telling you and don't try to be a hero by plowing through it. Rest is incredibly important. Your body will be trying to recover from the cancer AND the treatments.

I wish you the best of luck in your journey and am sure you will do well. Better days are ahead of you! 😃

Ed

David,
Thank you so much. Stanford seems to frown on the PEG but I will ask if we can do it proactively.

Really appreciate learning about your experience!

Stef

Hi Ed,
Wow! I am so happy that your cancer responded to the treatment and appreciate your advice.

I hope I can work a few weeks of the treatment; I am a scientist and pretty much just work at a desk. I do a lot of writing and some speaking to different teams.

Very anxious but trying to stay focused on the day to day and not worry.

Stef