Dear all,

I'm asking a question now that I should have asked months ago, but just recently realized meant so much.

What determines a resectable tonsillar cancer? Node involvement? Size of tumor? Stage? Differentation? Further involvement? Feelings of the surgeon?

My husband, on the advice of the ENT, was told that my husband didn't WANT to be operated on because it would leave him so disfigured. He instead, was given radiation along with chemo.

He was originally diagnosed with stage III... T2, N1, MO. (Left tonsil involvement....2 1/2 cm., floor of the mouth with possible involvement of the base of the tongue with a 2 1/2 cm. left lymph node involved. The SSC was poorly differentiated)

Would you have accepted this choice of treatment?

My concern is, was it just the opinion of this particular ENT, or was my husband's cancer truely not operable?

Brian????????????????? I'm really looking for some hard core facts here, and the internet is doing nothing but confusing me. There is no clear definition to be found.

We are scheduled to see a professor at Johns Hopkins in the next couple of weeks. I can't openly ask this doctor what we might be facing with a recurrance, because I don't want to undermine what faith my husband still exhibits. He is finally showing signs of rallying after a year of being crapped on. The lobectomy almost killed him.....literally. Emotionally, he gave up. And now this negative PET. I don't want to risk asking the Doctor what his true prognosis is, at least, not at this point.

Thank you all in advance for any insight you may have.

My prayers are with everyone,
Mandi

Hi Mandi, while I am not medically professinal, my case can give you some light.I was diagnosed with T2N3M0 stage 4 tonsil cancer with tonsil tumour measuring about 5 cm and the biggest nymph node on the left measuring over 7 cm. The team of doctors did not go for surgery because a large part of my neck would be involved. Plastic surgery would be a must and my vocal cord would also be permanently damaged which meant my voice would be seriously affected. Since I am a school teacher, my voice is very important to me if I can resume my work after treatment. So the final treatment was concurrent radiation and chemo in order to shrink the tumours first. Operation would still be necessary if the tumours did not respond well. Luckily, I did not need operation and my voice is saved and I could go back to my previous job. I just had my follow up appointment this morning and thank God, everything is fine.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Mandi,
I can pretty much ditto what Karen said. I am a musician, DJ and give teaching/training to companies for medical device regulatory affairs and need my voice. Like Karen also, my tumor was pretty good sized - 6 cm x 3 cm, on the tonsil.

My tumor was "well differentiated" and "focally invasive" which means it was pretty much contained in the immediate tissues and there was no mets detected. It almost filled my entire throat. Had it been "not well differentiated", my treatment course MAY have been very different. Then again, it may have stayed the same. They were taking out certain lymph nodes with the radiation, in fact, the radiation oncologist mentioned there were "...many regions of interest" besides the immediate tumor. I had IMRT. I presume that most of these were precautionary.

Disclaimer: My head and neck surgeon recommended against the surgery, maintaining that the odds of survival were just as promising with radiation and chemo alone. But this is my story and since each one of us is different, this is really more for entertainment value (or to provoke a healthy discussion of ALL available treatment options, especially for the newcomers) than should be considered a basis for their own treatment decisions.

Some would maintain that the "1-2-3 punch" - (slash, burn and poison) has the highest rate of survivorship. I personally have not seen any numbers (yet) to suggest one way or the other. If anyone knows of any scientific studies out there, please let me know.

What I am getting to is, IMHO, it is difficult to second guess what the original treatment plan would, should or could have been. I would think that the doctors would err to the conservative approach, not wishing a liability suit.

One option I do have (if necessary) is what is called "salvage surgery".

Your second sentence question is probably ALL true.

I did have a consensus among my three primary doctors that radiation and chemo would be efficacious for me. Had there been disagreement, then the outcome may have been different also.

A negative PET scan might just be showing scar tissue or other anomalies also (virtually all tests have a "false positive rate" -some are as high as 50%!).

I can truly empathize with your feelings, having recently had an MRI that I thought might have been a little more positive. We are programmed to run with the worst case scenario and the bottom line is you (or I for that matter) don't have all the data yet. I would have faith and keep a postive attitude that everything will work out rather than empowering it with negativity and fear.

I would also agree that maybe it's better to discuss the ramifications "off-line". My fears can infect my relationship and are passed easily to my wife (they call it "transference"). She gets scared, then I start feeding off it and it can be a very nasty cycle. You are wise to process it yourself first, especially since your husband has struggled with it.

And being a patient myself, I can truly empathize with his struggle also.

You will both be in my prayers also.

Gary brings up a really good point here and that is fear transference. This happens all the time, and it makes the path more difficult for both the patient and the caregiver. This would be a great topic to start a new thread on in the emotions or caregiver

Thank you all for your answers.

Being a caregiver is the hardest job I've ever faced. There are no words to explain how you lie down each night and prepare for tomorrow.

I hope I'm not out of place, but you guys with the cancer have a mission. We (caregivers) are here to hopefully guide the process. And when that process breaks down, we are the ones who are responsible. It's not always easy to be the "fix".

We all have personal issues......like me and Dennis.....we weren't on even ground when this all started. We are now dealing with life and death when before we were dealing with separation and divorce.

Of course I love him, but fate took the decision out of our hands.

Brian, you know I have much respect for this forum, but it seems at times that we can't honestly share our feelings, because we are admonished. This disease causes people to lie awake at night (like me now), and we need a place to air our grievances. We need to cuss, we need to rant, we need to cry........ We can't all be positive like the good people you are.

Thank you for the new forum. I know I may have needed the outlet more than most.

Mandi

Mandi,
I can't speak for Brian but I can say this, I have days in the toilet, days I struggle with fear but my counselor training tells me that someone has to be the "support" part of a support group.

I have worn the caregiver hat. I worked with and was trained by the hospice folks. Helped with the toilet, bathed, hand fed, etc. I had to counsel my own father to prepare him for his impending death. This is not about oneupsmanship, but rather my qualifications to comment on caregiving.

Caregivers are under appreciated for all that they do and suffer. The worst thing that could happen to me would be that I just die. That would be a relatively easy end to my problems. The worst thing that could happen to my wife and caregiver is the uncertainty, grief, poverty, loneliness, unfulfilled dreams, loss of companionship, etc. Certainly worse than anything I am dealing with.

You didn't volunteer for this either - it was just slammed in your face.

I had such serious anger issues from the radical disruption of my life when I was my fathers caregiver that I spent 2 years in therapy, weekly, one on one with an MFCC. Then I had guilt issues that I didn't do enough, or made the wrong decisions as his medical advocate.

In 1995, they didn't have all of the support groups that they have now. I had nowhere to turn to or any resources. I felt like a pioneer in the middle of the wilderness. I had to figure out everything from complicated medication schedules (not to mention contraindications and drug interactions), Medicare billing overbilling, I had to manage all my fathers bills and money. I took on the role of the meticulous, over-responsible. I had no power, my life was not my own. The girl I was engaged to at the time dumped me because she wanted me to put my father in a convalescent home (because it was taking away from our time together) but he feared that more than anything and insisted on being in his own home. I honored that. And this all happened when I had just 6 months of sobriety!

I am sorry that you have felt admonished simply for sharing your feelings. The forum should be a safe place in which to vent. I am sure that most on the site would not wish to admonish you or anybody else but rather offer as much support as they can.

We all have triggers also and it is difficult to know what are. Sometimes I don't even know my own triggers.

It is difficult to see the entire intentions of ones post when all you can see are words on a page and not their face or the emotion that went into it.

Gary,

Thank you babe. You made me feel understood, and lately that doesn't seem to happen much.

You are right....we didn't ask for this hat. For you to have rode both sides of the fence gives you such an original outlook. Bless you. I also had to care for my mother....even though it was a short illness, I was responsible for everything. Her treatment, her funeral, her bills, along with my husband being in the hospital fighting pneumonia. The boys????? Thank God for family, because I didn't see them for two weeks.

You are doing so well. Gary, please keep up your great outlook and spirit. I surely see you as a role model, and I know I'm not the only one.

Love,
Mandi

Mandi

I chose to remain silent for a while after reading what Mandi has posted on 22/8. I was taken aback when she said she (caregivers) couldn't share her(their)feelings honestly on this forum because she was (they were) admonished at times. Now after reading Brian's post, I need to write to back him up. I am a frequent visitor on this forum because I know very well this is the place I get and give support, I can vent and share my feelings, happy and miserable. So far, I have not seen anyone being offended personally or admonished deliberately. As a Chinese, my English is of no equal to anyone of you here and so I check the word 'admonish' in the dictionary to make sure I get the meaning right. Everyone here, whether the patients themselves or the caregivers, share the same mission.... to defeat the most devilish enemy in our life battle. Some are luckier than the others. Everyone has a story behind him/her. We also have ups and downs. Believe me, last year I was on the verge of giving myself up when I was in the very severe depressioin episode and at that time I have no support group to help me. Now I am standing on my own feet again but it doesn't mean my problems are over. As I have said before, we are in the same boat aiming at the same goal. I have never met Brian before but I can feel how he feels when reading Mandi's post.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Just read this post, so, I`ll add my two cents as a caregiver. I myself try to watch how much I say or vent as a caregiver on the Board. As has been said, caregivers face a separate set of problems, issues, etc. if I address my fears, hopelessness at times, and someone just joining us with a diagnosis reads how we feel, then they start to worry about how this is going to affect their loved ones, and that`s something that`s really personal. None of us want to scare those we care for more than they are............I`m a hoverer,it bothers Packer. I`m constantly on alert for new problems, I know my fear feeds into his and doesn`t help, but I also know I`m not going to change, that`s just me. I think as caregivers we walk a fine line, we try to keep everyone happy and half the time feel like we`re just going to fall apart, and I think sometimes we are too sensitive to what over what others say, we`re all trying to do our very best, but again we are only human, and we`re all this together, we just all have different parts we play......Dee