Halloween day 2003 my boyfriend of 5 years was Dx Stage IV (T2 N3 MO) SCC of right tonsil and tongue base. Don is a 51 year old who quit smoking 3 years ago on Thanksgiving Day. Avid golfer, papermill worker for 33 years. We optained 3 differant opinions before settling on IMRT/Chemo followed by surgery to remove lymph nodes on the right side. He's been doing great with the treatments. No Nausea. Complains about not being able to taste anything. Dryness not a problem yet, he's had 14 IMRTs and 3 chemos. He only gets chemo on Tuesdays and only about 1/3 the dose someone being TREATED with chemo gets. They tell us the chemo is only to help the radiation work better, not really to kill many cancer cell. The mass on the side of his neck really started shrinking over Christmas (WHAT A GIFT) But he's gone from 206lbs to 192lbs. He's blame it on quiting drinking??? But what brings me to this board tonight is because he is 100 miles away and I just got his medical records in the mail. (I have a release)There are things in there that I'm sure he hasn't been told or he would have told me. I was able to be with him through all the diagosis, 2nd and 3rd opinions up to 200 miles away and all the early consults. I've burned all my personal time and now, because of logistics, I can only go to a few treatments. The PET on 11/24 impression says all we knew about the neck cancer and 2) no additional sites of metastasis. Treatment started 12/9 and a CT on 12/8 says bilateral pulmonary nodules, the most worrisome are a 7mm nodulein the left lung, along the major fissure, and a 8mm nodule in the right lower lobe. These could represnt metastases given the patient's history END...???? What? We were told that it wouldn't spread that fast! Why didn't the DR. speak any of this to us? Why haven't they done another PET to be sure these are benign? I will be calling the Dr tomorrow. Right now I'm just numb and scared to say anything to Don! It also says there is paraseptal emphysema. The neck CT says there is cancer into the musculature of the tongue(it was just surface)also invasion of the anterior margin of the right sternocleidomastoid and possibly the right jugular vein! Also irreg platysmas and digastric muscle(whats that?)Now a couple level 2 nodes on the left side (with irreg enhancement)Yes the rug was pulled out from us 2 months ago, but 30 - 35 IMRTs/8 chemos and a much less radical surgery than one of the opinions(jaw split,salvage from thigh, learn to talk and swallow again etc.)Things were supose to be fine! Now I'm scared and alone til tomorrow. We were convinced our only fear was reoccurance and he's been sooo good. He now quit his 6 pack a day habit. NO BEER. We're still holding out hope that he will be able to golf again. He's a 8 handycap. Any golfer's out there? Is this a false hope? They said there's a nerve involved with the surgury and that he may need to get therapy to re-train the muscles. Not that golf is more important than life, but that was always so much a part of him, it breaks my heart to think. I don't want him to give up but I also don't want to give him false hopes. He's pretty optomistic and thats GREAT but how do I keep him from getting depressed when things aren't quite the same? This latest CT really has me scared but it was a day before treatment started. How long before they "peak" at the progress? PET, CT, or scope? I really need something to go on here. Any comments apreciated!

Hi Jeep,

Your post struck me with all of your anxiety and troubled heart. That goes with this cancer thing. There are plenty of things you want answers to that, frankly, no one can answer. You obviously care alot about what is going on!

That you care so deeply is worth more than any words can describe.

Some of your questions can only be answered by time and the process of care you and he are into. The good news is if everything goes ok he will probably be able to do almost anything he did before (but it will take time) As for the medical information you have in your hands, I'd recommend you put them away for now. Those records are a road map for the professionals. You are doing great by being diligent in watching out for his best interest but you may be seeing more than you need to deal with right now. The treatments need time to work and yes there will be more tests done. It is possible the cancer has spread to his lungs, but it is also possible that it has not. You are in a world that is different than we are used to and that takes a while to work out. For now trust in the care he is receiving, try to relax and be open to all the good that comes from these life events. Hugs work great and love is eternal.

Take care and try to have a happy new year.

Having read through hubby's medical records several times I can only pass along what we have found.

1) Reading xrays/scans is an art as well as a science and very often no two people will read them the same.

2) Xrays/scans can show something one time, be interpreted direly, be retaken in a couple of months and be fine. (We've had this happen several times, esp. with the lung issues - same here on the smoke/drink past)

3) They told hubby he wouldn't be able to raise his arm above his shoulder height after the surgery. He did almost immediately and still has lost very little function. He lost the spinal accessory nerve as well as the muscle but was in good physical shape.

4) The taste will return...it takes time. You can see hubby's recovery chart on our website (in sig).

5) Losing weight can come from many things. If he quit drinking substantial amounts just prior to his dx, then that is part of it. Another is that the treatment takes many more calories in order to help the body heal. Hubby needed almost 3000 calories a day just to maintain during his rads.

DON'T PANIC!!!! Sending you hugs....

Echoing what Donna said, xrays and scans are only a small piece of the puzzle and by no means definitive. In my case the radiologist(s) had all kinds of concerns about different suspicious areas (and this after Tx). Stuff like: "...mild prominence", "...increased enhancement of uncertain significance", "increase in fullness in right base of tongue", etc. It turns out that it didn't mean anything except for the head & neck surgeon to take a closer look. Comparing scans is tricky because you may or may not have scar tissue on this one that didn't show up on the last one or you may even be in a slightly different position from the last or you may have some fluid buildup or you may have a different radiologist who interprets things differently from the last one, etc. etc. If he has ever had pnuemonia anomalies may show up on the chest x-ray.
Thank God they're being diligent but it can be unsettling. My head & neck surgeon informed me that his visual and palpation exam is the gold standard.
I lost over 60 lbs. His weight loss isn't bad. Under 20 lbs is considered acceptable.

It sounds like the chemo he is getting is the type that oxygenates the tissues making the radiation far more effective. It is an adjunct to the radiation. Conventional chemo treatments (the kind that goes out and poisans the cancer) are typically not that effective in head and neck cancers. I am a little confused by the frequency though, if it was Cisplatin (or Platinol), the usual course is 2 or 3 sessions administered every 3 weeks, starting simultaneously with the 1st day of radiation.

Mark is right - ditch the medical records or use them to ask questions from the doctors to calm your anxiety. Doctors usually always take the worst case, most conservative, approach (to avoid liability no doubt).

His mental state sounds pretty good right now and that is a positive thing. Try not to freak out and feed the negative aspect of it. He may very well suffer depression later on in treatment or post treatment. It is very common in cancer patients and there are medications to manage it. Your doctor or team should be recommending them automatically (along with anti-anxiety meds if required). At least they should be asking the "right questions".

A 6 pack a day is a lot of alcohol. Some people would consider that "alcoholic or problem" drinking. When he starts feeling better he may drift back to his old patterns or he may "self medicate". Not a good thing if one wants to avoid recurrence. I would get some help and counseling for this.

Typically people tend to underexagerate their alcohol problem. When they say they drink a 6 pack a day (at home), they forget about the 3 beers they had with lunch and the 2-3 beers they had at the bar with the guys after work.

Cancer survival has a way of forcing one to become honest about their habits (or dead).

Thanks SO much for all your replys. WOW! What a differance a day makes! The radiolgist on Don's case returned my "frantic" message today. He explained that yes there are spots in his lungs,and that it is not uncommon,usually these are harmless but they will be monitoring them. This was a great analogy he gave me, and maybe it will help someone else out there. He said, " If we scanned your entire skin surface a few months ago, and scanned it again now, how many freckles, moles, age spots etc. would we find differant? WaaLA! I could sure relate to the age spots! He says Don is doing great. He looked in on his tongue today and there some major shrinkage going on! I know the nodes are about 1/2 the size of a week and a half ago! And now I learn on this board that there really IS hope for enough mobility to go back to the golf coarse! I can't wait to tell him tomorrow, he's asleep now. It's a really good day today. I can't remember the name of the chemo medication he gets once a week but I think it started with fluro something and some of the cita whatever...( forgive me for my ignorance there, but because it wasn't the major parts of his treatments I didn't get back to read those notes and thats one report I didn't get an update on yet but I will post it when I find out). Yes, he gets it for about 3 hours once a week. They say they've had a lot of success with this treatment for head and neck cancers. It's a University teaching hospital and on the "Best Hospital" list it's #20. We went to #5 for our third opinion but then learned that if you go to a surguon for an opinion, they want to do surgury first, If you go to a oncology radiologist, they want to do radiation first. Our decision was made when we went to a surgeon... and he said he, AND his oncology radiologist work TOGETHER to choose a plan (along with the chemo DR of coarse). As for the alcohol, your right most people don't tell the truth about their consumption, Don told his Dr's "a couple a week" at first. I jumped in and said CASES... That's weird why he would do that. I really exagerated with the cases bit, but I wanted him to be honest with the people tring to help him. And truthfully, all the DR had to say was "NO" and that was it.. It hasn't bothered him, he's not ornery, he didn't go into DTs or anything, He never drinks at home anyway and we really haven't felt much like going out since Halloween. Here it is New Years eve and we watched the Three Stooges marathon and played a couple games of scrabble. We're fine with that. It's culture shock more than anything, We're from Wisconsin! We eat cheese & brats, drink beer and root for the PACKERS! :rolleyes: I'll tell you though something that REALLY irritated us, (I think me more than him even) was to stop into a bar to see people you know and ask the bartender for a rootbeer and you get bombarded with questions! Does that happen in places other than Wisconsin??? How pathetic! I really hope the beer thing wont be an issue for him, when he makes his mind up he usually sticks to it. He knows now that this is what contributed to his cancer and that the reoccurance rates are bad enough and he wants to push the odds a little in his favor. He never batted an eye 3 years ago when he tossed the smokes. Nor did he light back up after the Dx. I pray that's a good sign. Sorry this post got so long but it's turning out to be great therapy for me whether anyone reads it or not. Thanks again for the reassuring words and great advise about the records. I guess I'm just as afraid of what I don't know as what I do. And my own worse enemy for being an info junky. I'll learn to be still but I'll always need information. Grasping for any more hope I can find. This board can help me find the balance.

Hi Jeepster88,

You can vent here anytime, Welcome to the club no one wants to join!!! You will find alot of support in this forum and I find it the most helpful of any other cancer site. Spoken from another Wisconsin golfer with a 8 handicap. Another name for Wisconsin is God's Country!!!!
Your friend, Dan