Never in my life did I think I would be on this site for oral cancer. My husband a 62-year-old, healthy, very fit man, 1 week before Thanksgiving developed a neck mass. After receiving 2 weeks of antibiotic therapy and no change in the size of the lymph node, a STAT CT of the neck was performed. Diagnosis at that time was tonsil CA with mets to lymph node. He underwent a wide resection tonsillectomy, as well as a radical neck dissection. Only 1 out of 27 nodes was positive. However, the tonsillar tumor was described as invasive poorly differentiated squamous cell carcinoma, 2.3 cm, margins were not clean. His metastatic lymph node was 5 x 3.2 x 2 cm, necrotic. All nodes above and below that node were negative. We were told by the surgeon, he would need to undergo radiation therapy. On the original CT scan, they also included part of the upper lung fields, which identified 5-mm nondescript lung nodule. We saw the radiation oncologist today who is ordering a PET scan to make sure there is no other metastatic disease. We were also informed he will need chemotherapy. I was overwhelmed by the introduction of chemotherapy and by the fact the tonsil specimen did not have clean margins. I am beyond upset. Looking for those who have been in similar situation with some positive results and for those who have been through this with a firsthand account of things. My husband is already a thin man, has lost probably 40 pounds. His health is of the utmost importance. Thank you in advance for any advice, help that you can give.

Well I haven't been through exactly what your husband has but there are many on the boards who have dealt with tonsil cancer and I'm sure will reply. I was diagnosed originally almost 5 years ago, had a recurrance last year and both times had mets to lymph nodes. I think you will find that with oral cancer each situation is different, and while you can draw some parallels between individual results, it seems everyone's story is different.

I had chemo with my radiation - cisplatin - and while it wasn't a walk in the park for me - others got through that particular drug virtually without effect! Go figure.

You sound very knowledgeable about what as gone on so far but there is lots ahead with radiation and survivorship. You have come to the right place - this will be a challenging year for both of you and we will do anything we can to help you.

Do you know what type of chemo, how much radiation, treatment start dates?

Breathe deeply - you have found the right source for advice and info.

Donna

Hi Lori

you have had a real baptism of fire with the diagnosis and treatment plan.Speed is of the essence in this disease,and the doctors certainly havent dragged their feet have they?

so much information in such a short time can be very daunting,and there is no hard and fast rules where oral cancer is concerned.The bleakest diagnosis can have brilliant outcomes and the most benign looking disease can actually turn around and devastate you,so advice is hard to give.

On a practical level,the best advice you will get ,is to maintain nutrition and hydration,as these are the most important aspects of tx and recovery.Rapid weight loss is common,and needs to be redressed as a matter of urgency.Can your husband still eat and drink,and if not has he had some sort of feeding aid applied?
Chemotherapy running concurrently with radiotherapy is also fairly standard practice when you have secondary nodes,so dont be too alarmed by that.With Oral Cancer you need to throw everything but the kitchen sink at it.

You have had a lot of information landed on you in a very short space of time,but you have the found the best support group in the world.Any questions you have will be answered honestly and with the knowledge of experience,so just take a deep breath and ask away.


good luck

liz

Thanks Liz.

He is just 2 weeks out from his initial surgery. Just within the last 3 days he has finally been able to eat "normal food". The wide tonsillectomy as the surgeon referred to it was absolutely barbaric. I understand why, however it did not prepare me for the amount of pain he was in. The neck dissection has not bothered him at all and is healing quite nicely. The radiation oncologist gave him the speech of eating everything he can get his hands on and to gain as much weight as possible in the next 2 weeks before RT starts. I have no qualms about having a PEG tube inserted if need be. I did get some inform today at the dr's office regarding foods, working on increasing his caloric intake even in the small meals he is eating. He absolutely hates the nutritional supplements ie Ensure or Boost, so that is kind of out of the question. Thank you again for your input. It is good to have someone to talk to, it is hard to relate to someone who has not walked down the path before.

Lori

Lori Ann,

Please read this and have your Husband read this also.

http://www.sptimes.com/2007/04/17/Floridian/Clues_to_the_cancer.shtml

While I didn't have my cancer in my tonsils it was in the Base of Tongue which is in the same region of the oral cavity that studies have concluded that HPV is the cause 72% of the time.

Hello Lori Ann,
What I had was somewhat similar except my tonsil tumor was rather small. I had 3 positive nodes. It sounds like you are getting very good care too.

With regard to the lung nodule, this could very well be nothing to worry about. If he hasn't had a chest x-ray for a while it is quite common to have "things" show up that are non cancer anomilies. Sometimes scarring from some past illness etc.

I have to agree tonsil surgery results in some of the worst pain I have ever experienced (and they only took one side)

Feel free to ask questions and or vent if you need.

HI lori Ann, I had my left tonsil removed and did induction Chemo for nine weeks and then seven weeks of rad with weekly chemo, I am now one year free of cancer!! I had no surgery or PEG Tube, but most should have one inserted before rads begin, also have him eat and drink as much as possible, try ensure and other drinks, he should take in 3000 cals per day. The WAR ahead will be hard and tuff but well worth the fight in the end!! Listen to the Doctors and hang tuff. Semper-Fi Bob

Hello Lori Ann

Sorry you and your family have to go through this. However, your husbands treatment has every chance of being totally successful. Six years ago I was in the same situation as your husband and am now fortunate enough to regard myself as an oral cancer survivor.

I would suggest that your husband has a thyroid function test before radiation begins. Like many others here I take thyroxine daily now, it is important that it is monitored.

I stopped working, had LOTS of rest and found that laughing with those around me kept me balanced.

Let us know how you both are getting on. People here have travelled similar paths and want to help.

Love and light from Helen

Hello, Lori, I am another who had tonsil scc met to 2 nodes. I had 7 weeks of rad with weekly chemo. If your husband has a feeding tube as is likely, get the ensure going down that. He won't have to worry about the taste. Once therapy begins, sense of taste will change drastically. What he can expect is that a mesh mask will fitted over his face to make a snug fit and hold his head still for radiation. I found it a very good idea to take valium before each treatment as mine laste about 20-25 minutes which is an eternity when your head is immobilized. Also, take any relaxing music cd's he might like. They should have a player. Take nausea meds as directed for chemo. For me, the nausea hit axactly 2 dqays after chemo ttx. Twice my wife took me in for hydration therapy because I couldn't even keep water down. Like me, your husband is lucky to have a wife who pays attention to what goes on. It can totally overwhelm the patient so, if not for Linda taking note the whole time, I would have been lost. My tx ended march 22 and in sept I was declared cancer free. Best of luck to you both, be strong.

Hi, Lori Ann,

I can understand how shocked and overwhelmed you must feel and how surprising it is that surgery did not remove the entire tumor. Many people with base of tongue/tonsil SCC on this board did not have surgery to remove the tumor (just a biopsy) and radiation and chemo represented the actual treatment. My husband is a similar age, is a healthy non-smoker and light drinker, and had a poorly differentiated tumor on his left tonsil/base of tongue area and one positive node as well. However, his ENT did not remove it given that the tumor had spread to adjacent areas as well (which have similar tissue to the tonsil). He had a "surgical" biopsy. He did not have a neck dissection (this option was presented as a possibility that might occur after radiation and chemo if necessary) and it turned out to be unnecessary after he had completed chemo and radiation. He had induction chemo and then 7 weeks of chemo/radiation. He had a peg tube inserted prior to chemo/radiation as well as a chemo port. If your husband has already lost so much weight and is thin, I would strongly recommend a feeding tube as even on that, he will lose more weight (my husband lost about 30 pounds on the feeding tube and 10 before getting it). As Cookey said- hydration and nutrition are critical in getting through treatment. I remember at first thinking that my husband would get surgery and that would be that and then being shocked and scared as the intensity and duration of the treatment plan was described. But, the good news is that a year out of treatment he is doing pretty well and his scans show no evidence of cancer. I know you will find support and information on this board to help you get through this.

Let me know if I can provide any help, support or information- Sophie H.