I have always avoided posting the same post twice in two different forums before but I'm making an exception here since I know that many OCF posters do not read the "recurrence" forum and many do not use the active topics submenu of active posts, but read mainly this general forum and the introduce yourself forums. so here is an edited version of my post there.
[quote]The conventional wisdom is that if you survive 5 years, you are out of the woods. But when does that 5 years start: at DX or when TX is completed. Even more importantly on a personal level, does the 5 year clock get "reset" when the Cancer comes back. I have gotten different answers from different doctors.
What have your doctors told you?[/quote]

Now there is a great question that I have wondered about too. Charm, you always help with your questions. LOL I hope my clock rewinds after my visit with my ENT and the Vascular surgeons visits the next 2 weeks. My mouth has changed daily for the worse the last few months unless it's the continually going to get worse and never better. Hell, we are toughys and going to make it.

Mine have told me that the clock starts ticking the the END of treatments and most definitely resets if a recurrence occurs.

Kevin

I am guessing but I would think at the end of treatment, that is why the dr. visits get spaced out longer and longer apart.

I think that when it comes to tobacco origin cancers, the 5 year mark does indeed mean something, but it's far from an absolute. Statistically (and everyone knows how much I hate manipulatable statistics) the odds of recurrence go down pretty low at five years, and are the highest in the first two. But that general statement made by oncologists for years, is far from accurate. Once you have had cancer, you can get it again. This is a genetic issue combined with lifestyle. Only part of that equation do we have any control over. Clearly, there are many factors that influence this, from field carcinogenisis which in tobacco which produces second primaries in new locations since they were all contaminated at some point, but turn into cancers on different schedules. And of course genetic predisposition to getting cancer itself, or perhaps the new exposure to virus causes, that if it bit you once they might bite you again (you certainly don't become immune to them). There certainly are a multitude of ways for things to go south, and I haven't mentioned all the ones that come to mind.

I'm about 12 years out from my primary, and there have been a couple of incidences during that time that were caught really early. I've met a 17 year oral cancer survivor, who cancer free for all that time, is in recurrence. Jeez that sucks. Biology is unpredictable. Hell, life is unpredictable. I still think about it all. I still skip a beat with every little sore that comes up in my mouth. I know my immune system overall is more incompetent as I age every year. Given all this, what can you really know for sure? Not much. I guess the question is can you every really be free of it emotionally? Since I know I can't get there intellectually, or through statistics, or by looking at others who are biologically "not me".... I don't think I can get there. Worse, I chose to stay in the fray by doing OCF - talk about a constant reminder and psychic debris.....

5 years is just a number. We all hope for a long life, one productive, happy, free from all ailments. But life isn't like that. Hope is a good thing, (and too much in the way of contemplating it all as it related to me specifically), yields reality checks that I don't like to dwell on, and is not helpful for me. When someone finds the key to not worrying about all the what if's.... I hope they write a how to book about it. In the meantime, I'm not counting days, months, or years since the intellectual and science part of me knows that they are not absolutes, but castles in the sand. I'm looking at tomorrow and trying to figure out how I can milk it for everting it's worth. Because even if you are not a cancer survivor, tomorrow ain't promised to anyone.

Brian

Quite an answer. You do realize your reply is half Zen and half Cancer Guru. AND I LOVED IT. Since I have never smoked tobacco my entire life, I guess I can retire that 5 year benchmark.
Like the very last Calvin & Hobbes cartoon said: "It's a magical world... Let's go exploring"
Keep the Faith
Charm

My simplistic answer is that you are a survivor from the minute that your diagnosis is made.

Although I am past the five year mark, I did not celebrate that day any more than any other day. To me every day is a milestone and another one that I have cheated death. When I was diagnosed I never thought I would see my 60th birthday. Now I'm on Medicare, retired and livng in a brand new home.

I guess that makes me a survivor.

Thanks Charm.... It is a magical world, a beautiful, and a horrible one at the same time. It's a ride with as many valley as peaks. I have often thought of William Blake's poem (I even have part of it as a caption under the Vietnam photo of me in Facebook) Tiger tiger.... it's the end that always gets me, after describing the fearfulness of the tiger. "Did He who made the lamb make thee" speaks to the dichotomy of life, and more than that our own nature. It all seems a delicate balance between the truly horrible, - wars, physical pain, cancer, famine, etc., and the days when you are blessed to really experience the joy of life itself. The beating of your own heart, the emotional rush of an unexpected, intensely profound moment that lasts only a second. We bounce between the extremes and exist somewhere in the middle, like a fragile dingy in a trough between two giant waves. At one moment we are at the crest of the swell in sun, and the next we are in the valley, the light blocked by the enormity of the water's walls on each side, worrying that it may crash upon us. A never ending cycle.

I have a friend, Ugo Panella, who is an Italian photographer. He travels the globe to conflict and war zones and more, but is recently finishing up a photo essay on cancer. Check this photo he just sent me as a gift, on the home page of his web site. http://www.ugopanella.it/

The story behind this photo is a microcosm of the dichotomy of it all. The father with with artificial limbs, embracing his daughter who he loves beyond all things, more than life it self. The daughter safe in her father's arms. The story behind this and the other images in the Sierra Leone links at the top of the page is staggering. The rebel armies that are populated with children soldiers, came to their village. The terror tactic that had been used there (with no intervention from the world for more than 2 years) was for them to not murder people, but to cut off their hands or arms if they refused to work the diamond fields as slave labor. The father refused, and the rebels forced his daughter at gunpoint to swing the machete that cut off his arms..... I have been staring at this photo for two months since he sent it to me, trying to get my mind around what these two individuals went through. What their life is like, what the depth of their love is. What they carry within themselves.

As cancer warriors we all go through some degree of hell. We become absorbed in what our own battle is, we have enormous empathy for our fellow travelers. When we emerge from it all we are different, physically, emotionally, certainly changed forever. If we get to live a month, a year, a decade, we savor things - if we have grown as individuals in our test of fire. There is a richness in our survivorship. I think your statement says it well. That we should venture forth into the magic of the time that we have been given fully, tempered for sure, but without reservation. Aware that the tiger lives in the forest we walk through. But certainly without a useless waste of thought, sweating the small stuff that will interfere with the richness of our next breath, and the experience of the miracle of it all.

Sorry to hi-jack the tread into this. But tonightI feel myself more introspective than normal. Much has happened to good people that I care about that seems to have little reason to it.

Powerful photo! Thank you, Brian for sharing this link with us. Your experiences and the depth of your compassion and empathy for others is what has brought us all together and taught us the value of our connectedness to each other.

Just to add to Brian�s statistics argument, we are constantly barraged by the �numbers� being thrown at us, usually by the medical and insurance companies. For me it is difficult not to set some of these artificial goals even though I for one should really know better.

My mom was first diagnosed with Thyroid cancer at the age of 16 (1941) had the tumor removed. She made the magical 10 years only to have a recurrence in 1957 right after I was born. Again she had surgery to completely remove her thyroid and radiation (general Xray). Again she went past the magical 10 year mark only to be diagnosed with uterine cancer in 1970, colon cancer in 1981, breast cancer in 1994 and finally pancreatic cancer in 2005. She died in 2006 a full 65 years after her initial diagnosis, the oldest cancer survivor in the state of Louisiana. Talk about genetic predisposition� Sometimes this lovely stuff just will not leave us alone.

So Charm, retire the benchmark if you can, I certainly try.

and *my* favorite Calvin:
"I have a hammer! I can put things together! I can knock things apart! I can alter my environment at will and make an incredible din all the while!"


Kevin