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#54197 - 12/26/03 08:23 PM Long Term Survival Chances
Daniel Bogan Offline
Patient Advocate (1000+ posts)

Registered: 07/21/03
Posts: 1163
Loc: Kaukauna, Wisconsin
Hello All,

Can anyone tell me what my chances of having a reoccurance of my Oropharynx cancer? I was a stage 4, with no lymph node involement and no metasistas and the ENT didn't get all the cancer cut out due to the location near or on the carthoid arterery.

They hoped that the IMRT would have killed off any remaining cancer cells. But they really don't know for sure if the radiation did that.

Having survived this far post surgery(5 months) without any signs of a reoccurance really doesn't tell me much does it?

I need to know what my chances of long term survival is? Is this something only God can answer?

When patients have a reoccurance what is the normal time frame and where does it reoccur most often?

Thanks for the help in advance. This is on my mind alot and is affecting my daily life.
_________________________
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away.

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#54198 - 12/26/03 09:19 PM Re: Long Term Survival Chances
Mark Offline
Patient Advocate (1000+ posts)

Registered: 03/31/03
Posts: 1375
Loc: Minnesota, land of 10,000 taxe...
Hi Dan,

You already know what the answer is, and of course that is also the problem. There is no way of knowing. Welcome to the Twilight Zone of survivorship. You have made it through all the treatments and now you have nothing to hold on to. I think these days are harder than the days of treatment. First you got to battle with the cancer, now you get to battle with your own mind.

Yes I have been there (yes to some extent I am still there). I compare it to playing Russian roulette every morning when I get up. You spin and then click...you live another day wondering about the next morning.

The solution is to put the revolver away. The gift of an illness like what you have had is now you can appreciate every moment you have. Forget about the unknown. The reality is nobody ever knows when and how this life will end. Even if you had a recurrance it might still be a runaway truck that gets you.

If I told you you had a 10% chance of surviving this would you live differently than if I told you you had a 95% chance? My suggestion is to live every day as though it was the last (we all should cancer or not) Yes you should have a will, yes you should plan with your spouse for worst case options. Then go back to living!

Dealing with this part of your survival does get easier with practice and passing of time. smile
_________________________
Mark, 13 Years + 2 months survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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#54199 - 12/26/03 11:05 PM Re: Long Term Survival Chances
Sherrie Lynn Offline
Supporting Member (50+ posts)

Registered: 08/07/02
Posts: 76
Loc: MI
Dan, if your cancer was near or on the artery isn't that nodal involvement? My husband had 3 positive nodes and one of them was right on the artery and the ENT Surgeon peeled it off...thats how he put it anyways. He had tonsil cancer, cancer grew on the inside of the tonsil into his neck, could not be seen from the throat.
His doctor gives statistics but said they really don't mean a thing. My husband is 27 months out of surgery ....
Have a good New Year.
Sherrie
_________________________
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001

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#54200 - 12/27/03 01:41 PM Re: Long Term Survival Chances
minniea Offline
Patient Advocate (1000+ posts)

Registered: 08/02/03
Posts: 1627
Loc: va. beach
Hi Daniel,
You are in the stage of this disease process that I just came out of and believe me, it's the toughest stage of all. Hopefully what you will learn from others will get you through it quicker so you can get on with what is important, which is living your life.
When I finished my radiation on July 10th just the thought that I was DONE gave me more energy. I started researching online, etc., and what I found scared me beyond reason. Here I had spent since April 1st believing that I had a true shot at beating this thing, yet everything I read was telling me that I might as well just curl up in a ball and wait to die. And that's basically what I did for a short amount of time. I literally took myself out of my life, exited my families life, and spent every waking moment online or reading about how I was going to die.
I began to come out of this stage when I found this website. On here I could find facts that were TRUE facts, could find people that had been through the same stuff and were still here, living and enjoying their lives. Brian and everyone had a way of telling the truth in a positive light. I didn't snap out of it overnight, but it did help me start to turn the corner. I spent lots of time talking to God and he helped me realize a very important fact, one that to this day is a huge concern for me. I realized that I wasn't afraid to die, maybe fearful of HOW I would die, but not afraid of dying. What I was so fearful of was leaving my children without a mother, that thought tears at my soul. After getting this straight in my mind, it dawned on me that if this disease was going to cause me to die young there wasn't a thing I could do to stop it. So, this meant that if I were going to leave my children without a mother, then I would leave them with AWESOME memories of me. Not memories of someone that lived as if she were dying. Does that make any sense?
Have my husband and I talked about me dying and what he will do? Yes, we have, but he pretty much refuses to talk cancer with me any longer as he is convinced that my time with the disease is over. His sureness is a huge comfort to me. Also, Daniel, do this one last thing. It's something I have done since I was a child and why my family tells me I am so much like my Grandmother. Ask yourself a question and then listen to yourself for an answer. I have this deep, gut feeling that I will survive this cancer, that I will win the battle. I don't believe that God will want me before my job here on earth is done, which has always been to raise my children and to make other peoples lives better and happier. Search yourself for that gut feeling, bet you find it and it will be an amazing feeling. Will you keep having times of anxiety and fear, yes, you will. I do and realize that I always will. But the times are easier to handle, not as intense and much shorter lived. A single phone call to my husband or a hug from one of my kids pulls me out of it.
Now you will enter the stage of every little bump and pain is a return of the cancer. I am still in that stage and find relief in laughing at myself over it, making a joke of it sort of. Brian has been correct each and every time I have asked about a spot or lump, etc., so post on here and you will get a pretty accurate answer.
More then anything Daniel, do not spend alot of time alone. Go for a walk, or just go out into the front yard, it will help.
I hope this site and the friends on here will hurry you through this stage as it did for me. Take care Daniel and listen to yourself, we usually know the answers to questions we ask before we even ask them.
Love, Minnie
_________________________
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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#54201 - 12/27/03 03:05 PM Re: Long Term Survival Chances
Daniel Bogan Offline
Patient Advocate (1000+ posts)

Registered: 07/21/03
Posts: 1163
Loc: Kaukauna, Wisconsin
Thanks for the replys Mark. Sherrie Lynn and Minnie. Mark was right I already knew the answer to my own question. His words make it seem so simple. The stst't say we don't have all that much of a chance but again tha stat's don't apply to me. I will either survive or I won't. Being off from work and taking all the medication and thinking about what will happen to me is not good.

My wife and I have raised two wonderful children and are proud of both of them. I will attempt to follow Mark's advice and live each day as the blessing it is. When I return to work in Feb my mind will not dwell on cancer all the time. I really am sick of thinking about it all the time.
I'm afraid it's easier said then done. But I will try my hardest. Thanks to all who have supported me and I wish everyone nothing but the best!!!

Your Friend, Daniel.
_________________________
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away.

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#54202 - 12/27/03 05:26 PM Re: Long Term Survival Chances
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4646
Loc: Laguna Niguel, CA
I don't think I can improve on what everyone before has said to you. I do know from my own experience now 5 years out, that cancer is never far from my thoughts, of course my situation is unique since I deal through the foundation with tons of people each week that have questions, or are in end of life issues. Often I see myself in them. Cancer scared me in a way that I had never been scared before, more than Vietnam, more than other events that nearly took my life. I think it was because I have basically lived an illusion most of my life, and that is that I was in control of it. When it comes to the small things there maybe some truth that your free will and decisions set you on various paths of success or failure, life or death. But with a disease like cancer, I was totally out of the control part of this experience. I didn't engage in lifestyle issues that might have caused it, and it was going to be up to doctors who I had just met to get me through it. Having lived the life of control illusion successfully before cancer, this came as quite a shock to me. I think less about death, than I do about suffering, or loss of mental or physical control. As Mark has stated so many times, there are so many ways to go, and you just never know when or how, why give cancer any more weight than that car that runs the red light?

Living in the now is the best we can do. Statistics offer us little help, as we are not the same as those in them, so to a certain extent it is apples and oranges. But like every survivor, I read them and thought about them. Without going into the minutia of it all (since they may not apply to you), statistically, recurrences happen MOSTLY in the first two years, after that their occurrence drops drastically off, and after five years drops drastically again. That doesn
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#54203 - 12/27/03 09:33 PM Re: Long Term Survival Chances
aussieh Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 12/25/03
Posts: 528
Loc: Australia
Hi Daniel, I also think about recurrence often and found the posts on the General Board, Odds of a recurrence very informative and helpful. Helen
_________________________
RHTonsil SCC Stage IV tx completed May 03

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#54204 - 12/27/03 09:58 PM Re: Long Term Survival Chances
karenng Offline
"Above & Beyond" Member (500+ posts)

Registered: 11/25/02
Posts: 541
Loc: Hong Kong
Dan, thank you for posting your question which has been lingering in my mind all the time. Your question also triggers a lot of stimulating responses and insightful thoughts as stated in the previous posts which I read word by word .You are very lucky to have found this forum so early and believe me you are at the hardest stage now waiting for going back to your job.I bumped into the OCF (11.2002)after I had suffered from very severe depression (4.2002).My story could have been totally different if I had found this support group earlier. People around me didn't know what had happened to me thinking that I should feel grateful when the treatment had successfully killed the cancer in my body and that I should be able to lead a normal life soon. They didn't understand my problem and feelings because they were just onlookers and of course I don't want anybody I know to be in my boat at all. So their words were not convincing to me and sometimes I rejected their words of comfort. Minniea, my husband also thinks that the cancer has left me forever and says that I will live longer than he and I should be the one taking of my sons when he leaves me! Brian is right that if you get yourself occupied, you won't dwell on the word cancer so often. I never think about it when I am teaching my students, when I am swimming, when I am reading a story book, when I am cooking dinner for my sons,when I... Dan, don't worry about things that we cannot control.

Karen stage 4 tonsil cancer diagnosed in 9/01.
_________________________
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.

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#54205 - 12/28/03 12:22 PM Re: Long Term Survival Chances
fr mike Offline
Contributing Member (25+ posts)

Registered: 06/27/03
Posts: 41
Loc: new jersey
Dan,

Others have already offered great advice. I try to keep myself involed in the things that I am passionate about. Distracting myself? Maybe. But hey, it gets my mind off of worrying about it. I also take the basic approach that since I'm a pig-headed sicilian it doesn't matter what the stats are since I'll beat them.

I was told when I was in Italy that we have a different approach to life. Genereally speaking the world eats to live, but for many Italians (and Italo-Americans wink ) we live to eat. Remember what it is you live for and live for it.

Peace,

Fr. Mike
_________________________
Fr. Mike
SCC on the base of tongue, right side. T2 N1 M0. July 25, 2003 partial (40%) glossectomy, forearm flap reconstruction, right side neck disection.

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#54206 - 12/28/03 01:13 PM Re: Long Term Survival Chances
DavidD Offline
Supporting Member (50+ posts)

Registered: 03/29/03
Posts: 62
Loc: Estevan Saskatchewan, Canada
Hello everyone, I just wanted to reinforce Brian's statics on survival percentages. I myself had made it to the 7-year mark without a recurrence and then.........surprise its back. After 7 years of positive check-ups and only facing and dealing with problems from treatment the news hit me hard. Even though it was caught at an early stage my world still came to a screeching halt yet once again. I feel apart this time more so than the first time or second time. Drugs helped (that is the legal kind) :p

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