My husband was diagnosed last week with SCC in right tonsil and lymph node(s) in right neck. Seeking attention was prompted by a significant lump in neck. Berrium (sp?) swallow and CTs and more CTs to confirm that cancer is only localized. We did just do a PET yesterday. Also met with Radiation Oncologyst yesterday. Several options being presented. We may be getting ahead of ourselves trying to figure it all out until we see results of PET but to help make the best decisions for short-term treatment vs long-time quality of life, I have several questions (boy, how much room do I have here?). Question 1: Should we pursue surgery first and if so to what extent? Tonsil only or both? Concern with surgery first is that ENT who tested and did original diagnosis talked about removing all nodes in right side of neck and maybe the trapezoid nerve which would compromise my husband's ability to throw. He is an avid ball player himself and volunteer coaches along iwth my son the girls hs softball team. My husband lives for baseball so this scared him but no so much to hinder the fully required treatment. Our thought is that if it was just radiation and chemo, the nerve may not be impacted unless indeed it had been invaded. Will the PET show that? The surgery is obviously irreversible so again while we want to assure long term life, we are factoring everything we can think of into our decisions. Have more questions but this box is kinda freaking out on me.. Probably my computer. I thank you so very very much for your feedback and sharin gof knowledgeg and experience. Never thought I would have to be in a support group like this but ever thankful there is one! Thank you again!

Hello Soldier's Wife
In 11/2007, they found squamous-cell cancer under my right tonsil when I was having a tonsillectomy, and removed both tonsils. The cancer had spread to some of the nodes on the left side. Others on this Forum have had treatments for tonsil cancer, and I think without removing tonsils, but with chemo and radiation. After they found the cancer when taking out tonsils, I had 7 weeks of radiation, with one day/week chemo. So far, I haven't had a recurrance and it will be 4 years in February since last treatment. Others will have to join in about plus or minus factors with not removing tonsils. Of course, I have, and still have to a degree, effects from the radiation. Did ENT suggest removing tonsils?
julieann

Welcome to OCF! Glad you found us, sorry you had to! Treatment protocols generally depend on staging , tumor size, location, metastisis etc... Treatment really depends on the specifics your husband is facing.

The best advice is to get the absolute best medical opinion available to your husband and get a second opinion from a CCC and then follow what makes sense to you. My opinion is there's more to life then throwing a baseball so by whatever means to keep breathing and beat this thing.

Good luck and keep your chin up, you've found the best place for support on Head & Neck Cancer so you've already got a leg up.

Eric

Welcome to OCF! You have found a great place for support to help you and your husband thru this. At this point there are all kinds of appointments and tests. Some things you may want to take care of prior to starting treatment. Get a full blood test so the doctors know what your husbands normal numbers are. Make sure to include the thyroid. Visit the dentist and get a mold made of his teeth in case he needs radiation. He would be using flouride trays. Get a complete hearing test including high pitch frequencies. Some chemo can cause hearing issues. Most importantly, have your husband eat everything he is hungry for. He should try to put on a couple pounds as any treatment he gets will probably make eating difficult for a while. Most oral cancer patients lose significant amounts of weight. When he is going into treatment weather it is surgery or radiation with or without chemo, he wants to be in good shape. Eating healthy is very important.

I understand all of your concerns regarding your husband's treatment options. While we can give you lots of info and support, only you and your husband can choose his path. Personally, I would consider throwing everything at curing his cancer so he only has to go thru this once. That should take precedence over playing or coaching sports. I dont want to scare you but this is way more important than a hobby. Many of us oral cancer patients have completely different lives now that we have gone thru treatments and become survivors.

Best wishes with all the tests and planning!

I would get his cancer slides tested for HPV which I am 70% certain will test positive. I'm also guessing here that he's a non smoker, if not that will change everything. Assuming non smoking I would then seek another opinion from a comprehensive cancer center who deals with HPV+ SCC tonsil primaries every day. My best guess is that he can avoid the surgery and just (not be belittle that Just word) do the concurrent chemo and rad. Whatever you do don't let some cut happy doc perform any cuttings until you get him tested for HPV AND get a 2nd opinion.

Thank you all so much for your quick responses! I am so grateful for this forum to know people have been through it and have experiences and thougts and advice. I am grateful for each of you! I know about being concerned about life QA post treatment. I feel almost selfish now asking. Of course our priority is 100 clean survival, but I have to wonder if it is all necessary seeing that the QA issues we have been able to identify so far stem from surgery and yet postings here and speaking to a friend (who happened to be a cancer surgeon) who just finished up treatment 6 months ago, have been shown clear by going through chemo and radiation. Not that those don't come with their own long term potential impacts on QA.
As you can tell, I'm very green to this, very naive, and just wanting to be sure we make the best decisions. Surgery is a one time irreversible event. We have feedback from the one of two ENTs in a reasonably small community. We have engaged ourselves with the one cancer center in the small town as well. I just wish they -- the oncologist in this town -- could consult with a more advanced center, e.g., MDAnderson who everyone says is the best. Do we rely on our small town alone? Is there a way without travelling hundreds of miles away to get a cancer center to work with our doctors? We'll find a way to travel if we need to be sure we are making the best decisions. With a son still at home and daughter in military, it's difficult, but we will. I apologize as I feel I am venting and that was not my intention. I cannot seem to cry because I remain so overwhelmed. I am instead very angry. And I do not like that I take it out on special people like yourselves. Forgive me.
I assume as a result of the PET scan last week, and follow-up consultations today with both Radiation Oncologist and Medical Oncologist that we will be presented options for treatment. I would like to put our options out there, sharing with this forum to help educate and inform our decision. So I will probably write more this evening.
Thank you again so very very much!
P.S. details about my husband... he is 52, never smoked, casual drinker. Will be able to add more medical facts after appt today. Thank you again!

I wouldn't rely on small town clinic. I would get the best; I would try to get to the nearest Cancer Center. It seems to be divided with surgery/chemo/radiation vs chemo radiation. If you goto a major cancer hospital they will have a tumor board that will chose his treatment. I recommend at least 2 2nd opinions. Good Luck!

My experience was much like Julianne's, except they didn't even remove the tonsil as the radiation burned it away to practically nothing. There are long term affects from the 7 weeks rads and weekly chemo, mostly to do with swallowing, reduced saliva and messed up taste buds, as well as shorter term affects such as weight loss and fatigue. Get him to eat as much as he can of all his favorite foods. It may be quite a while before anything tastes right again.

ENT indeed suggested tonsillectomy with neck dissection and removal of ALL lymph nodes, not just one displaying invasion..

Thank you! Will be back tonight. Heading to meet new oncologist now. Also will have chance to see results of PET which may show more activity in other nodes. not sure. praying not. Thanks again!

It's good to have several levels of nodes removed if they are going in. I am a remove as much as you can surgically - girl - then sweep up anything microscopic with rads and chemo. Rads & chemo isn't easy but it is doable. quality of life can range from not great to good, depending on your body, and possibly and post treatment therapy you may do. Good luck!