radiation for head and neck cancer

Mary Ann

I just had surgery for oral cancer. The cancer was under my lower front teeth. This was #4.
I had wanted to have my remaining teeth pulled but was advised not to because I have a neurotic jaw. I got that because of having two years of intravenous Zometa. followed by Boniva. I was put on antibiotics to help with the pain, but my mouth hurt more and more. My surgeon kept doing biopsy's and they would come back ok,Then one came back malignant. His suggestion was to replace my jaw bone. I chose to have a lesser surgery that took out the teeth and some of the bone. He told my family that he thought that I had made the right decision and said that he had gotten all of the cancer and that I would not need radiation.
When I went for my 6 week appointment he said that he wanted me to have radiation. there are so many things that I am confused about. I won't even go in to those. Also I have a pituitary
adenoma. They want to remove that as soon as possible. He thinks I should do the radiation before the brain surgery. I have decided not to do the radiation because from what I know about the side effects I just don't think I would have quality of life. I own an Italian restaurant and I am the chef. I wouldn't be able to taste or probably eat my own food. Now I know that some of you are thinking that my life is more important than my food and my restaurant and it truly is !! I don't want to die but I want to live not exist.I could really use some suggestions or just thoughts. I know I have been blessed in so many ways and there are those of you that are a lot worse off than me and I hesitated to even write this because I don't want to sound like I feel sorry for myself, well some times I do, but then I pray a lot and get over it Anyway thanks for reading this and God Bless all of you beautiful souls that have suffered from any form of this horrible disease......Mary Ann

Kent Cass

AE gave us focus on this word, Mary Ann. All of our suffering and compromises are relative to our own experience. I, in truth, know that my physical suffering has been far less than a great many active in our ACS niche. Yes, I was bombarded with an aggressive Chemo regime that took a large toll for 5 weeks, but that is the extent of what I would regard as suffering mightily. And, I have recovered very well, with minimal complications, in comparison to you and so many others. So, don't sell yourself short on the enormity of the battle you have fought, and are still fighting. I would say, Mary Ann, that you must focus on what you want your life to be, to find what is acceptable, and what is not. In saying this, all of us insist that you give it a great degree of thought. It is your life, Mary Ann, ultimately. Your family is in this with you, of course, but it is your life; and, you are the one who must choose what is of the greatest of relative importances to you- what is acceptable, and what is not, going forward into the remainder of your life. It is good to be alive, Mary Ann.

Believe

kcass

Mary Ann

Kent Cass said:

AE gave us focus on this word, Mary Ann. All of our suffering and compromises are relative to our own experience. I, in truth, know that my physical suffering has been far less than a great many active in our ACS niche. Yes, I was bombarded with an aggressive Chemo regime that took a large toll for 5 weeks, but that is the extent of what I would regard as suffering mightily. And, I have recovered very well, with minimal complications, in comparison to you and so many others. So, don't sell yourself short on the enormity of the battle you have fought, and are still fighting. I would say, Mary Ann, that you must focus on what you want your life to be, to find what is acceptable, and what is not. In saying this, all of us insist that you give it a great degree of thought. It is your life, Mary Ann, ultimately. Your family is in this with you, of course, but it is your life; and, you are the one who must choose what is of the greatest of relative importances to you- what is acceptable, and what is not, going forward into the remainder of your life. It is good to be alive, Mary Ann.

Believe

kcass

Thanks Kent for your thoughts. I hardly do anything but think about all of this. I have always regarded my life as very precious. I enjoy my family, my friends, cooking at my restaurant and talking to the people who come in to eat.I love my life as it has been. Even though I have been through some big battles I have been in remission from any form of cancer for 6 years. So I guess I thought I was home free. So my big question to myself is what now?
I have always been a very positive person, and a total believer.I will figure it out with Gods help. Yes it is good to be alive!!!


Mary Ann

ratface

Mary Ann said:

Thanks Kent for your thoughts. I hardly do anything but think about all of this. I have always regarded my life as very precious. I enjoy my family, my friends, cooking at my restaurant and talking to the people who come in to eat.I love my life as it has been. Even though I have been through some big battles I have been in remission from any form of cancer for 6 years. So I guess I thought I was home free. So my big question to myself is what now?
I have always been a very positive person, and a total believer.I will figure it out with Gods help. Yes it is good to be alive!!!


Mary Ann

I think your arguments are flawed
Forgive me MaryAnn but I'm not pulling any punches here. I want you to be alive in another six years. Radiation is a significant effective therapy for killing this cancer and to not avail yourself of it because you argue that your taste will be comprimised is foolish.

Is this your fourth recurrence? Do you have yet another issue in the brain to deal with? I am not a chef but have fancied myself an excellent cook most of my adult life and honestly everything I now cook taste like crap since my taste buds are screwy. I however can instruct someone else on how to prepare my favorite dishes. You would have countless options on giving cooking classes or hiring another chef and still mingle with your customers. You relinquish all your options as a corpse.

Please sincerely seek some professional counseling because your comments are not those of a rational person. I apologise for my bluntness but I'm seeing two pyschologist trying to deal with the realities of this cancer and from my point of view you are not looking at all your options. I wish you the guidance and direction that is out there for the asking. Please seek some input outside of this forumn.

Kent Cass

ratface said:

I think your arguments are flawed
Forgive me MaryAnn but I'm not pulling any punches here. I want you to be alive in another six years. Radiation is a significant effective therapy for killing this cancer and to not avail yourself of it because you argue that your taste will be comprimised is foolish.

Is this your fourth recurrence? Do you have yet another issue in the brain to deal with? I am not a chef but have fancied myself an excellent cook most of my adult life and honestly everything I now cook taste like crap since my taste buds are screwy. I however can instruct someone else on how to prepare my favorite dishes. You would have countless options on giving cooking classes or hiring another chef and still mingle with your customers. You relinquish all your options as a corpse.

Please sincerely seek some professional counseling because your comments are not those of a rational person. I apologise for my bluntness but I'm seeing two pyschologist trying to deal with the realities of this cancer and from my point of view you are not looking at all your options. I wish you the guidance and direction that is out there for the asking. Please seek some input outside of this forumn.

Update, please
MARYANN- how are you doing? Please advise. Have you taken ratface's good advice, which I do hope you have? More than just he and I are wondering how you are- we all wonder, and hope and Pray.

Believe

kcass

Fire34

Kent Cass said:

Update, please
MARYANN- how are you doing? Please advise. Have you taken ratface's good advice, which I do hope you have? More than just he and I are wondering how you are- we all wonder, and hope and Pray.

Believe

kcass

Mary Ann
Mart Ann
As Kent has said we are all wondering. Hope you are doing well and will seek treatment. I felt like giving up during my time but didnt. Please Dont you either Best Wishes
Dave

Mary Ann

Fire34 said:

Mary Ann
Mart Ann
As Kent has said we are all wondering. Hope you are doing well and will seek treatment. I felt like giving up during my time but didnt. Please Dont you either Best Wishes
Dave

update
I am totally not giving up. I am talking with different Drs. about this, but right now I have to have this pituitary mass removed as it is already compromising my vision. I have had radiation for breast cancer which I didn't mention. That's why I was on all of those bone strengthening drugs. My jaw bone is already very weak. I was under the impression that radiation weakens it as well.These are things that I am trying to get straight in my mind.
One doctor tells me one thing and another one tells me something else. I really feel that patients totally get the runaround by all of the medical profession. I am not an irrational person and I certainly don't want to die, but I need to be well informed before I have anything else done to me. I hope that all of you are doing well and are cancer free. I will keep you posted.........God Bless

thegirlfriend

Mary Ann said:

update
I am totally not giving up. I am talking with different Drs. about this, but right now I have to have this pituitary mass removed as it is already compromising my vision. I have had radiation for breast cancer which I didn't mention. That's why I was on all of those bone strengthening drugs. My jaw bone is already very weak. I was under the impression that radiation weakens it as well.These are things that I am trying to get straight in my mind.
One doctor tells me one thing and another one tells me something else. I really feel that patients totally get the runaround by all of the medical profession. I am not an irrational person and I certainly don't want to die, but I need to be well informed before I have anything else done to me. I hope that all of you are doing well and are cancer free. I will keep you posted.........God Bless

so sorry
Mary Ann, Im sure its extremely agitating and exhausting to get so many different answers
to 1 or 2 questions, or 5 or 10 questions. From what Ive experienced, here you may have many different people with many different experiences, but so many things are the same amongst everyone.
All of the questions you have for the drs you are more than welcome to post here and see if you can get something a bit more settling or satisfying for you to make your informed decisions.
Unless the dr has also experienced cancer, which some have, but most not, then they can only go by their patients stats and everyone is different. I have found that there are more answers here that are similiar than different. That may or may not be a good thing, but all I mean is that this is yet another place for you to ask away, and although the answers you may get can be very different, they are coming from those who have gone thru it all.

so please just remember that you are not alone, people notice when you havent posted, people here care about wanting you to feel good and right about what you decide for your body and life. Know what one of the best things here is? People dont mind repeating themselves if you need them to.

so lets see if you can find out if you can have your life and have your treatment both.
ask away and see what you get. you have nothing to lose by asking everything here as you have asked so many doctors what they think or know.

take care
Kathy

ratface

thegirlfriend said:

so sorry
Mary Ann, Im sure its extremely agitating and exhausting to get so many different answers
to 1 or 2 questions, or 5 or 10 questions. From what Ive experienced, here you may have many different people with many different experiences, but so many things are the same amongst everyone.
All of the questions you have for the drs you are more than welcome to post here and see if you can get something a bit more settling or satisfying for you to make your informed decisions.
Unless the dr has also experienced cancer, which some have, but most not, then they can only go by their patients stats and everyone is different. I have found that there are more answers here that are similiar than different. That may or may not be a good thing, but all I mean is that this is yet another place for you to ask away, and although the answers you may get can be very different, they are coming from those who have gone thru it all.

so please just remember that you are not alone, people notice when you havent posted, people here care about wanting you to feel good and right about what you decide for your body and life. Know what one of the best things here is? People dont mind repeating themselves if you need them to.

so lets see if you can find out if you can have your life and have your treatment both.
ask away and see what you get. you have nothing to lose by asking everything here as you have asked so many doctors what they think or know.

take care
Kathy

How about
We start with specific questions that you are confused about. Lets take them one at a time. fire away?

Kaylee-parotid

Hi Mary Anne, Jst wanted to
Hi Mary Anne, Jst wanted to let you know that a year ago I had radiotherapy for parotid cancer, and within 6 weeks of RT finishing my taste was back to normal. All the best with your decision making.

Scambuster

Mary Ann said:

update
I am totally not giving up. I am talking with different Drs. about this, but right now I have to have this pituitary mass removed as it is already compromising my vision. I have had radiation for breast cancer which I didn't mention. That's why I was on all of those bone strengthening drugs. My jaw bone is already very weak. I was under the impression that radiation weakens it as well.These are things that I am trying to get straight in my mind.
One doctor tells me one thing and another one tells me something else. I really feel that patients totally get the runaround by all of the medical profession. I am not an irrational person and I certainly don't want to die, but I need to be well informed before I have anything else done to me. I hope that all of you are doing well and are cancer free. I will keep you posted.........God Bless

New Good things replace old good things
Hi Mary Anne,

Sorry to hear of your situation but thought I should give some insight from a fellow survivor. I am six months out now and recovering well. I had an SCC of the tonsil, had surgery and then 70 hits of Radiation with IMRT and Chemo (Erbitux). While I understand your concerns to some extent - I would strongly advise you to proceed with treatments. Even if you chose alternative therapies, it would be a fight, and better - than let this cancer(s) take their potentially nasty course.

I am a food lover, come from a family of restauranteurs and I do hear your plight. I lost all taste and saliva and am still compromised somewhat, but I can now look back and say I am glad I did do the treatment. My taste has returned for many but not all foods, and while I do miss certain foods, I am starting to enjoy many different types of food again. You do develop a different perspective, but it really isn't all that bad. Salads are great, I do a green salad with salt and Virgin Olive oil every day. I love buffalo mozzarella on tomatoes with lashing of V. Olive Oil and salt. I eat almost everything though in different quantities and now avoid sugars and processed foods (a healthier choice which is all good anyway).

I think your post treatment condition will depend much on where you are irradiated. I know using IMRT (the new more accurate radiation) can reduce collateral damage. Also it depends how much and which part of your tongue may be affected as what taste areas get damaged. Then there are the different degrees of recovery to consider. Bottom line is you can get through it and live a very full and happy life. The outcome and extent of recovery is unknown but from our friend here, I have learned that many of us resume very normal lives and the changes are more than manageable in the majority of cases.

I have a good friend who have a section of his lower jaw removed and replace with a piece of bone from his hip. He also went through a trial but is now good as gold and back to his old self for some 11 years now.

Mary Anne, I returned from a very dark place indeed and know during that period, pre, during and especially post treatment, I struggled to see the light. Now with the genius of hindsight, I can say I am so happy I did continue and did whatever it took to rid myself of the **** disease, went through a horrid struggle to recover, and am here as proof to my family, friends, colleagues and myself - this was a damn good choice.

I hope too you make the right choices. We remain here to help you however we can.

Wishing you all the best.
Scambuster