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!

I recommend getting treatment at a major comprehensive cancer center. Preferably a NCI designated or affiliated CCC

Also, it doesn't appear to me that in this case the current NCCN practice guidelines are being applied.

I believe those Guidelines definately call for a HPV testing and in most cases recommend chemo-radiation prior to any ND, since after TX a ND is often unnecessary. Also it probably isn't necessary to remove the tonsils because after the radiation they will likely be gone.

Multilevel precautionary node stripping usually is not an acceptable nor approved protocol these days and can lead to permanent undesirable side-effects.

A major CCC can precisely plan and deliver radiations treatments with pin point accuracy. This level of critical expertise and technology is seldom available at a community clinic.

Please go to a top cancer center. Even if you are able to combine some treatment with your local one, sometimes that works, you are going to miss something without consulting the doctors that see this disease all the time. Your husband is young, he'll go through treatment fine. Yes there are side effects to everything, but those NHI designated centers or CCC's know what it takes. You may have less "destructive" treatment there than at your local place.

I know it seems like a lot of trouble but believe me it will be worth it. You can have records sent, you can carry DVD's from CT & PET scans. People get second opinions all the time. You can sometimes get faster appointments with these places if you say you are considering having your treatment there rather than just a second opinion. Nothing should be more important at this time than getting this right. There is no way your local institution has more experience, or even adequate experience in dealing with your husband's cancer.

Best,
Anne

Let me repeat myself from my earlier post:

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.

PLEASE heed my advice before you let any ENT, who is a trained surgeon, perform a radical neck dissection or even a partial ND. I am relatively sure he will test positive for HPV and would avoid surgery if in the hands of a comprehensive cancer center.

Yesterday's appts were informative. Interesting how when we left the radiation oncologist we were leaning for radiation-chemo no surgery. After next appointment with medical oncologist, we are now leaning for surgery with radiation with chemo as determined necessary. Obviously we have not a clue but still working to understand. The medical oncologyst works with a local university in Denver who he is referring us to for a second opinion. If the appointment is not soon, we may forgo even tho I am hopeful we can get in this week yet. Scary part of second appt was the information that the cancer is growing rapidly -- 14X surrounding tissue.
So, selfishly, back to the removal of all nodes... has anyone experienced the repercussions of edema from a total removal of all nodes in neck? I ask because at the age of 11 they removed all my lymph nodes in groin resulting in a significantly disfigured leg I have managed emotionally and physically. Kids at 11 can be quite cruel. Anyway, no pity part here -- 'lived' is key word. My nodes had been removed in anticipation of finding cancer, which they did not. So, just some understanding of why we are nervous about the removal of all nodes. It's that weighing treatment vs long-term life quality. Thank you for allowing me to be open and honest and not feeling like a real ignorant selfish person.

Hi ... first off head and neck edema is a little easier than that in the extremities. Gravity is the helper. When it is leg related it all gathers below the groin area and is hard to clear (same with arms - though it is easier to hold your arms over your head for a bit). The more you are on your feet during the day the more your extremities swell. With head and neck edema it works the opposite. I find I am a little swollen in the morning and as the day goes on the swelling dissipates. Also there is lymphatic massage that is great and helps especially during the first year. I would go for it once or twice a week to start and once I learned how to do it, I would do it three times a day at home the days I didn't go to see the therapist. I am no longer seeing the therapist, and do the massage myself once or twice a day. It makes a world of difference as once you can comfortably do the massage, it helps by building new pathways for the fluid to drain. This helps stave off some fibrosis, and swelling (I'm not very swollen at all now) and I've been doing it for 6 months. I had 40 lymph nodes removed from my neck. One was positive.

I know everyone here is saying your husband should get tested for HPV, and they're right, and if you choose not to do surgery that's fine too, but if your MO is telling you this is a very aggressive cancer, I would do the surgery. I know no one wants to be cut for no reason, but cancer that is spreading quickly is hard to catch and you want to get out in front of it. The best way in my opinion is to remove what you can, and then blast the rest. I know it seems like overkill if you only have one node involved and they remove 40 - however, just because they can't see and measure it on a CT, PET or MRI, doesn't mean that there aren't microscopic cells there. So cleaning house isn't a bad idea. A neck dissection for me wasn't a bad surgery, (I also had part of my tongue removed) but the neck dissection was mostly numb, and stiffness no real pain, both of which are being helped by physiotherapy, yoga, and acupuncture. I personally would prefer them to remove whatever cancer they can find, and then use rads and chemo as a support measure, than leave the cancer there and try to blast it while it's still trying to spread.
HPV related tonsillar, and BOT cancer responds more readily to chemo and rads, so finding his status out will help with this decision. However, time is VERY important if it is as aggressive as it sounds, so if you can find out the results of an HPV test, soon, and get in with a specialist this week for your second opinion, that's great, if not... I would make a decision and jump in with both feet.
the tumor in my tongue was well differentiated, the spread to my node happened within a month (actually about 2 weeks - I went from not feeling a thing to being able to palpate a 1.4 cm node under my neck) my node was (moderately differentiated), poorly differentiated (rapidly growing) can move even faster.

Mine wasn't HPV related, but I also had no precursors for the disease (no smoking NO drinking (of any kind), no drugs, and I'm a vegetarian!

So it can happen to anyone, what you don't want to do is end up chasing it. You want to get out in front of it. Find out if it's HPV related. If its not hit it with both barrels.

Good luck.

You really should have HPV testing before you commit to anything. All head and neck cancer is not best treated exactly in the same way. Some kinds need surgery first, some need radiation & chemo only. Regarding lymph nodes, they won't remove all his lymph nodes in his neck. Some of us--you can tell from our signatures how many lymph nodes we had removed, a bunch, but that is not all of them. Most of us who had neck dissections had it on one side only. Please do not jump into this without checking another doctor's opinion. I have no vested interest in whether or not you do or do not have surgery done where you are, or have radiation/chemo done there, or anything. I'm just not sure you realize all the possibilities that are out there. Mostly these tumors do not grow that rapidly--I'm not clear as to how this information was obtained.
All the more reason to be with a center that deals with a lot of oral cancer.

Also--understand surgeons like to perform surgery, radiation oncologists prefer radiation, your MO, I would want to know their reasoning as well. Not trying to pressure you, but be careful. Your MO may be exactly right. But whatever you decide you will not be able to redo, so check it all out.

Best,
Anne

Where in Colorado are you? If you PM me, I can give you the name of my surgeon here! My primary sight was my right tonsil. They operated to take out my tonsils and to biopsy the tumors on my tongue and neck. I didn't have the neck dissection. They felt that they could get rid of the tumors in my neck with the chemo. After 6 weeks of recovery from the surgery, I started chemo-induction therapy (Cisplatin, Taxotere and 5FU). After the first round, the tumors in my neck were gone! I had a total of 3 of these treatments and I was one of the very lucky ones as my ONLY side effect was I lost my hair after the first week. 2 week break after that and then I started on the 7 week radiation/chemo therapy. I had a feeding tube but still lost 70 pounds in 4 months (luckily, I had excess to lose!).