Meet others living with Head & Neck Cancer: Introduce yourself

Welcome to this group! It helped me a lot when I had questions,,, 4 weeks ago my husband had his TORS surgery for hpv throat cancer,,, he is coming along quite well, as I’m sure you will also,, he had his tonsils and 36 lymph nodes removed,,, no need for feeding tube, just pureed all his food for a couple of weeks after,,, also I no radiation or chemo,, they said they got it all, and we were given the choice to closely monitor him for two years or do 5 weeks radiation,, the percentage dif between not doing radiation and doing radiation was only 5 percent,,,, so we chose not too,,,, radiation in the throat is quite tough,,,, I know it’s a very scary time for you, but I’m sure you will be fine,,, it’s unbelievable how many have this type of cancer! Everyone over the age of 50 seems to be getting it!! Our neighbor had it last year as well!!!! We didn’t have a vaccine for it in the 70s,,,,,also trust in the lord!!! He will get you through this!

My problem is not related to my tongue cancer. This is relating to problems my son, whom I live with, is having with his tenants, one of whom happens to be my 28 year old grandson. And his male friend and a female friend of both of them. My son got upset with the partner of my grandson. My son turned it off as the temp last night was in the low 50's. You turn off the air and let the cool fresh air in.
They want it on all of the time. No windows open. So my grandson is sticking up for his partner and disagreeing with me also. He has hurt me very much how both of them are showing no respect at all.
They said they would complain to local police about matter. I do not want the police coming here
The three of them have been consistently late with their rent payments , payments which are lower than what they would pay anywhere else! My son is an electrician. This has upset him very much and I don't know what he can do. I just want to ignore this and just take care of myself but when your grandson who is involved, it hurts. He has a bipolar problem and is on medication I do not approve of his boyfriend. Tat doesn't help any.
I have tongue cancer could not have surgery. I have a feeding tube for eating I am working on eating what's left of my tongue to move. It's hard hard to swallow. I am on a diet of ice chips and small sips of water. Food smells so good and my son is a very good cook! My tongue is getting a little more movement, but not enough to swallow real food. I am 75 years old and other than the cancer am in good shape and can get around quite well. My life has really changed. What a surprise. My son does the feedings but I can do them. I have quite a bit of medicine which has to be injected into my feeding tube. I can not do that yet. My granddaughter gave up her room in the house. It has a small bathroom attached which I need. She is in college and isn't home much. She will be a junior this fall. She isn't home much. Also a grandson who will be a senior in the fall and then will be going on to college. We have plans to convert the basement where I did live. It's a complete apartment and the two of them would like to have that for themselves. That is fine with me. I guess I just need someone else to talk to. It's really getting hard to watch others eat. I am having cancer treatment. Which consists mainly of immunotherapy drugs and they are working. I will have a
Pet CT scan next month. I hope they can shrink the tumor that showed up in my tongue.
Please talk to me and tell me about yourself! Thank you

rosie100, I'm glad that you have a good attitude. I had a feeding tube. It was hard to watch others eat. I had tonsil cancer. My tongue was OK and I was able to sip room temperature water when I had the feeding tube. That helped later when the feeding tube was removed.

I had physical therapy exercises to help keep my swallowing muscles limber while I had the feeding tube. Maybe you could ask for something like that.

You said, "My life has really changed". How true.

If you want to read more about me, I posted my introduction recently.

Best wishes.

Hello @morgansmith99 and welcome to the head and neck group. HPV squamous cell carcinoma is often quite successful in treatment. It’s just not an easy road and will put your daily life on hold for a few months. It’s not a journey anyone wants but here it is and it must be taken.
There are folks here with experience in these cancers and treatments so feel free to ask or vent if you will. Good luck and courage.

SCC , skin with deep involvement including facial nerve, zygomatic bone and periosteum, parotid gland and multiple anterior neck nodes as well as the majority of the skin.
Now on a 30 cycle proton radiation course with a weekly Cisplatin chemotherapy which is about half dose but being used to increase the sensitivity of the cancer to the proton therapy.
Interesting note is I’m A PA retired following a 43 year career In medicine starting with 4 years regular army and national guard then 39 years as a PA the last 32 years in a large Otorhinolaryngology/Head and Neck Surgery group.
Could this cancer be karma for my lifes work?

Hi @larsonsec and welcome to our head and neck group. No. Cancer is not getting back at you for all you have done. At a reach we could possibly see a virus connection to many if not all cancers. I think time will tell. The advances just in the last twenty years with Squamous Cell research are amazing.
If you have any questions please don't hesitate to ask. I would think you could also help many here with issues beyond what our layman patient heavy group can advise others with.
I'd much rather welcome you to retirement or a gathering at the local Legion Hall but here we are, cancer vets. You can win this battle. You've got this!

Hi, my name is Barry, I live in Florida, 72 years old. Two months ago I developed a lump on the right side of my neck. No other symptoms. I was diagnosed with squamous cell carcinoma in my neck, which I had to have a radical neck dissection of 3 tumors and removed all my lymph nodes on the right side of my neck and shoulder. After healing somewhat, 3 weeks later I had a second TORS surgery to remove a tumor and cancer in my right tonsil, the primary cancer, that spread to my neck and lymph nodes. Its been about 3 weeks now. And it was HPV P16 positive. I have some trouble swallowing food, dry mouth, drool from the right corner of my mouth, a slight lisp, and much atrophy in my right shoulder. Infact, I was a good tennis player, and now my shoulder is so weak, I can not hit a ball over the net. I will start physical therapy.
Now, my BIGGEST CONCERN. I can manage ok the way I am now. They want me to start 6 weeks of Radiation Therapy as a added measure to hopefully prevent reoccurrence. When I read all the side effects that can greatly effect the quality of my life, I am extremely cautious and petrified to start radiation. I am sure many people have the same situation and same dilemma. I am kind of frozen with fear and do not know what to do. I need guidance. I would greatly appreciate any advice and support. Thank you

Hello @big123 and welcome. This certainly isn't something to have in your life plans at your age but here you are. As a patient, not a doctor, there has been a lot of success with drugs such as Keytruda in place of radiation with HPV +16 variant SSC. We know that radiation therapy has had an excellent track record in stopping or holding off SSC but you are correct in the assumption that there will likely be damage both short and long term from radiation. Ask around if drugs might be a better option. Second opinions here can be a life(style) saver.
If radiation is the only option, the side effects can be worked out over time usually. For me it was the only option twenty years ago, yet I still fly airplanes, ride horses, play a bugle, laugh, cry, live life. It's not the end, just a really bad bump in the road.
If you have any questions as you go along, there are a lot of good folks here who can help you out. Courage!

Thanks William

Hi Tom from Illinois, 8 months out from neck dissection, 6 weeks of radiation and chemo.
seek out alternatives to radiation. yes, it can be overcome but there are some long term effects that can be life changing. If radiation is only alternative hopefully you will receive proton and not photon. If it can be done on only one side that would be very helpful