Decision Time

gdawg55

HelenBack said:

choices

I just saw this and can offer up my husband's experience. He was given the exact same choice for the exact same diagnosis. Actually, initially the plan was just chemoradiation after the initial biopsy surgery which, itself was no piece of cake. His pet scan was inconclusive as to whether there were lymph nodes involved.

He got a second opinion at Stanford and their tumor board suggested that he have left side neck dissection and tongue surgery to see if any tumor remained after biopsy surgery. Their hope was to find no lymph node involvement and if he had clear margins, no radiation. If there was lymph node involvement he would have radiation, but no chemo, unless they found extracapsular spread.

His recovery from the neck disection was pretty straightforward. I know that tonsilectomies are quite painful but only for a few days. you have to stay on top of the pain with meds and really must also take a laxtive since the meds really mess things up. Don't wait on that!

But more to the point: they discovered that he had 4 lymph nodes with cancer,  one with minor extracapsular spread. So he needed the chemoradiation after all. But here's what I believe: even though he needed the treatment anyway, it seemed that more information was better. The field of radiation is more targeted and it seems compared to many on here that he had fewer side effects from radiation. If he hadn't had the dissection, we wouldn't have known about the extracapsular spread and perhaps not treated that enough. 

The whole ordeal was pretty terrible of course, but I'd say within a month or so from the end of treatment, he was 80% back to normal. Now, a year and a half out from the end of treatment it just seems like it was all a bad dream.

We were hyper-vigilant about nutrition and somehow either througnh luck or diet he avoided thrush which was big. If you can start some kind of strong probiotic regimin (doctor approved, of course) it might make all the diffrence.

Of course, every person reacts differently, my husband was pretty lucky, I guess, and I hope you will be too.

Helen

Good Luck,

Helen

 

Helen, thank you for sharing

Helen, thank you for sharing your husband's experience.  Glad he is doing well 1.5 yrs out of treatment.  I'm hoping to be able to say the same.  I will make sure to stay on top of the pain meds and thanks for the advice on the laxatives....don't want to have any troubles there.  Whatever happens (whether they find lymph node involvement or not) I'm ready to fight this thing.

Thanks again.

petroglyph

For me, I think you are

For me, I think you are making the best call. As always the choices are yours.

Although I had my tonsils removed as a child there were portions left that were removed this last Feb. They went ahead and removed all FIVE tonsils, yeah weird hunh. I also thought we only had two. Not so, wonder why we don't know this stuff?

I am really glad you are taking this option. Like you have already said if the other options are warranted you can do them when you heal up. I think they break the news to us in stages. The first time they scare the hell out of us to get our attention. It works.

Did you contact your state insurance board about putting pressure on the insurance company? Has the insurance company denied your dr's request for a PET in writing definitavely or left it sort of ambigous? The decisions will be all yours and it looks like you have accepted that, a big strong "good for you" sincerely, from me.

You may not wish to, but on another matter I contacted my state senator and I was just about floored when he actually stood up for me. You can usually get ahold of them as they will be home for the holidays. It is only a phone call, and often this time of year you can at least talk to their office help. I don't know how your senator leans with all the conflagration over the ACA, but like I said it is a phone call. I personally think it is a crime that although you are diagnosed your insurance company has "apparently" declined you of the benefit of a pet versus a ct, while allowing you other cancer treatment. I hate to have any vindictiveness in my person but may they have the opportunity to be in your place sometime, fighting for their lives.

I hope you are aware also of the neck resection. What happened with me I think is maybe sop, but when they opened my neck they removed 17 lymph nodes, only the first two were positive. Part of my decision for surgery in the beginning versus burn and poison was to get the big chunks out of my body. Sooner or later your body [immune system] will have to fight off any disease in us, better to fight a smaller problem?

You probably won't be able to eat solid food for a while after the surgery. What is popular around here is a Nutra Bullet, blender type machine. It works great and I make my own smoothies with all kinds of good stuff in them. I have posted this before and hope I'm not bothering you, if so let me know. Also before I have mentioned I didn't think much of what was offered to me to keep my weight up, the Ensure given to us or recommended. Go to a whole food marked it there is one around and get some nutrition beforehand. It isn't just about putting in calories, it is about nutrition.

My fave when I couldn't swallow for awhile was/is cooked yams blended with almond milk, cocanut juice and vanilla. Also as a sweetener, Stevia is superior to others. IMO.

I am glad you have taken charge. I have been told that nerves will grow back at about half inch per month. It is anavoidable to clip a few, more of a nuisance than a problem. Probably going to lose some weight, hope you are eating well now. Don't let them short you on the pain medication, it is not their pain, you can discard it if not needed. An addiction can set up in as little as two weeks with narcotics, beware. The constipation thing is real. Dehydration is real. You will be FINE, you will.

I am glad others have stepped up on the radiation thing. You can always get some. I just saw my ent 2 days ago and he again said I was right and they were wrong about my refusing rad. I told him again I didn't need to hear it but thanks, he is still my dr. We are still monitoring, if something shows I will be on top of it. Refusing the rad, I got lucky. But "statistically" they wanted to give it to me, "just in case", but in order to do so they wanted me to go get my molars pulled and a mask built. I'll save that for another day. Be well my friend!

gdawg55

petroglyph said:

For me, I think you are

For me, I think you are making the best call. As always the choices are yours.

Although I had my tonsils removed as a child there were portions left that were removed this last Feb. They went ahead and removed all FIVE tonsils, yeah weird hunh. I also thought we only had two. Not so, wonder why we don't know this stuff?

I am really glad you are taking this option. Like you have already said if the other options are warranted you can do them when you heal up. I think they break the news to us in stages. The first time they scare the hell out of us to get our attention. It works.

Did you contact your state insurance board about putting pressure on the insurance company? Has the insurance company denied your dr's request for a PET in writing definitavely or left it sort of ambigous? The decisions will be all yours and it looks like you have accepted that, a big strong "good for you" sincerely, from me.

You may not wish to, but on another matter I contacted my state senator and I was just about floored when he actually stood up for me. You can usually get ahold of them as they will be home for the holidays. It is only a phone call, and often this time of year you can at least talk to their office help. I don't know how your senator leans with all the conflagration over the ACA, but like I said it is a phone call. I personally think it is a crime that although you are diagnosed your insurance company has "apparently" declined you of the benefit of a pet versus a ct, while allowing you other cancer treatment. I hate to have any vindictiveness in my person but may they have the opportunity to be in your place sometime, fighting for their lives.

I hope you are aware also of the neck resection. What happened with me I think is maybe sop, but when they opened my neck they removed 17 lymph nodes, only the first two were positive. Part of my decision for surgery in the beginning versus burn and poison was to get the big chunks out of my body. Sooner or later your body [immune system] will have to fight off any disease in us, better to fight a smaller problem?

You probably won't be able to eat solid food for a while after the surgery. What is popular around here is a Nutra Bullet, blender type machine. It works great and I make my own smoothies with all kinds of good stuff in them. I have posted this before and hope I'm not bothering you, if so let me know. Also before I have mentioned I didn't think much of what was offered to me to keep my weight up, the Ensure given to us or recommended. Go to a whole food marked it there is one around and get some nutrition beforehand. It isn't just about putting in calories, it is about nutrition.

My fave when I couldn't swallow for awhile was/is cooked yams blended with almond milk, cocanut juice and vanilla. Also as a sweetener, Stevia is superior to others. IMO.

I am glad you have taken charge. I have been told that nerves will grow back at about half inch per month. It is anavoidable to clip a few, more of a nuisance than a problem. Probably going to lose some weight, hope you are eating well now. Don't let them short you on the pain medication, it is not their pain, you can discard it if not needed. An addiction can set up in as little as two weeks with narcotics, beware. The constipation thing is real. Dehydration is real. You will be FINE, you will.

I am glad others have stepped up on the radiation thing. You can always get some. I just saw my ent 2 days ago and he again said I was right and they were wrong about my refusing rad. I told him again I didn't need to hear it but thanks, he is still my dr. We are still monitoring, if something shows I will be on top of it. Refusing the rad, I got lucky. But "statistically" they wanted to give it to me, "just in case", but in order to do so they wanted me to go get my molars pulled and a mask built. I'll save that for another day. Be well my friend!

Thanks, petroglyph.  My

Thanks, petroglyph.  My insurance provider would only approve PET for stage III or higher.  Doesn't really matter I guess since I'm going the surgery route with neck dissection....so if it's in there they'll find it.  They did kinda infered to the radiation oncologist that if I decided to go the radiation route that they may approve the PET for that treatment only.  Go figure.

Thanks for your helpful information.  I have one of those magic bullet contraptions that my wife will use to blend up a bunch of yucky stuff after my surgery.  Not really looking forward to it, but something I have to do.

God Bless!!

donfoo

gdawg55 said:

Thanks, petroglyph.  My

Thanks, petroglyph.  My insurance provider would only approve PET for stage III or higher.  Doesn't really matter I guess since I'm going the surgery route with neck dissection....so if it's in there they'll find it.  They did kinda infered to the radiation oncologist that if I decided to go the radiation route that they may approve the PET for that treatment only.  Go figure.

Thanks for your helpful information.  I have one of those magic bullet contraptions that my wife will use to blend up a bunch of yucky stuff after my surgery.  Not really looking forward to it, but something I have to do.

God Bless!!

Thanks, petroglyph.  My

Thanks, petroglyph.  My insurance provider would only approve PET for stage III or higher.  Doesn't really matter I guess since I'm going the surgery route with neck dissection....so if it's in there they'll find it.

If you can get a PET somehow I would push for it. It is more thorough than neck dissection which looks for locoregional mets in the nodes. It is an "educated" exploration approach and can miss mets. The PET is far better at indicating abnormal neoplastic activity throughout the head/neck region, indicating potential active cancer tumors. Don't mean to scare you but it does matter.

petroglyph

gdawg55 said:

Thanks, petroglyph.  My

Thanks, petroglyph.  My insurance provider would only approve PET for stage III or higher.  Doesn't really matter I guess since I'm going the surgery route with neck dissection....so if it's in there they'll find it.  They did kinda infered to the radiation oncologist that if I decided to go the radiation route that they may approve the PET for that treatment only.  Go figure.

Thanks for your helpful information.  I have one of those magic bullet contraptions that my wife will use to blend up a bunch of yucky stuff after my surgery.  Not really looking forward to it, but something I have to do.

God Bless!!

I agree with donfoo, as far

I agree with donfoo, as far as C goes, the Pet is the superior diagnostic tool.

I too am thankful of my wonderful wife and her strength.

Would you be willing to seek help at a church or seek another benevolent group or med school that might help defray the cost of a Pet?

Do you have recent bloodwork and know what your wbc is as well as a direction it may be going, up or down?

It is a great feeling to be able to have a baseline to compare your tests afterwards and watch as your condition improves.

Nothing like a little confidence builder as this whole journey can get pretty emotional as well as physical.