Anybody ever live 3+years w/this stuff?

[schmaydee]

..is there a list of survivors w/SCLC? on here? (or anywhere) 2-3yrs or more?..... i found one (kinda) for NSCLC...... but not for SCLC....

what does NED stand for...?

Doc has told me they dont do pet scans for SCLC.....but i hear of folks getting them.....i'm 'sposedly in remission maybe thats why.....but i'd kinda like to know if the stuff comes back....... thanks,

..s

[daggiesmom]

Hi Schmaydee,

Joanie (daggiesmom) here. i had sclc limited diagnosed 4.02. To date i am NED (which means No evidece of disease.) I just went to the oncologist on Thursday and he is very pleased on my progress. So far I am healthy for 32 months. I hope this gives you hope. Please keep posting if you have any more ?

Joanie

[Cindy RN]

Well I have made it almost 4 yrs. This Feb 2005 will be 4 yrs since my diagnosis. Read my bio below. I have had 1 reoccurance in that time. I have been 'chemo free' since last Aug. and am now working teaching at a local college nuring classes.

There is hope. I had extensive-it was in the mediastinal, around the heart, R lung and L adrenal gland.

I had 1 PET scan done after the first completion of chemo in Dec of 2001. I do get CT scans about every 2-3 months to watch for it to come back. When it does it is fast. I had a scan in Dec 2002 and it was NED then in Feb 2003 there was a baseball size tumor in the upper L lung.

God has been with me and the Drs thru out this.

YES there are some of us who are living --LIVING--much longer than what we are told in the beginning.

Love Cindy

[schmaydee]

yes,

i look at everybody's stuff.....there's not a lot of folks here over 2 years......ofcourse the people that go into remission (and stay that way) might not come back here ....

i have all the hope in the world..and a better chance than most....but i wanna know the real numbers .... i think you get what you got (the cancer and what stage)...they do what they can (treatment wise).... and your body does what it can .....then whatever happens happens....

@ this point they say i'm ned or in remission (i guess thats the same thing????)...but i dont know how he can tell w/a just a ct scan...there was still scar tissue (if not cancer) still in there...he xray'd me 6 weeks later and said it wasnt "growing"...

seems like they'd biopsy it.....or pet scan....who knows?

my onc-doc said that i prbly have a 45% chance for 5yrs after taking the pci.....but he's been way to optimistic before......only thing i'm pretty sure about is NOBODY REALLY KNOWS!!!...i figure 5 yrs is cured.....

i see vast differences in the #'s for LS SCLC.......usually 20-25% for 5 years.... ????

you can see who lives and dies here..and what they went (and are still) through....it would be good if there was a list of all of us that had it on it....prbly is but i cant find it......

.....s

[daggiesmom]

Hi Schmeydy,

Joanie, again here. I'm the SCLC survivor of 32 months talking to you. You sound very worried - understandable, of course. Don't worry about numbers of how long people survive with this - it's just numbers. This disease seems to be a very individule thing ; it depends on each person's body and how it responds to treatment. Please don't start panicking. If you have good doctors behind you working with you, follow what they say and don't worry about things that haven't happened yet. Take it one day at a time and remember there are people here who have gone through all the radiation and chemo and have come out of it feeling fine. Have faith and hope - that will pull you through.

And we're all rootin' for you

Joanie

[schmaydee]

..not really..(worried)

i disagree on the numbers thing......i wanna know the numbers.... their not gonna be good....weve got a pretty bad disease here....i accept that no prob.........some people beat the numbers ....everybody wishes everybody would...there's always hope....regardless of the #'s..... i'm just trying to find out what they are......

just kinda sleepless since NOVEMBER (steroids) and wondering about some stuff.....2 days ago i was 'sposed to "start" feeling better from the pci treatments and from being weined off of the steroids (pci ended 2 weeks ago)...it aint happening...

the cancer treatment ended sept 24 and i'm not convinced its gone........all the doc had to go by was a ct done 6 weeks after that.......i guess its enough????.... but i'm wondering why others are getting pet scans and my doc is telling me they dont work for sclc...

prbly just sick & tired of being sick & tired ......and everybody here knows what thats like....

...s

[lynn]

Hi

Just wanted you to know...my Dad was diagnosed with ext sclc in 1983 and after treatment lived for 20 years!!!I also have a family friend with the same diagnosis who was a 7 year survivor!There are long term survivors out there...you can be one too.

Hang in there,

Lynn[/b]

[Frank Lamb]

S.. I am like you are about wanting to know what the numbers or the odds are.Trouble is the numbers that they derive all the statistics from are badly outdated.Constant new medicines and treatment options are giving us the ability to live longer every day.

There are a lot of long time survivors out there.As for the number of them on the board here,quite a few. This website I don't think was even here 5 years ago.We are growing,as we do grow there will be more long term survivors join up.

Hang in there and thanks for your contributions.

[Addie]

schmaydee...

My onc doesn't do PETs either. He says they don't tell him enough!!?? You can have false positives AND false negatives with PET scans...so perhaps he figures (and maybe your onc does too) that PETs aren't any more definitive than CTs??

The thing is....if you have trust in your docs (and they got you this far, didn't they?) then rely on that.

This period of time in all of this.....the point where we are NOT undergoing any kind of treatment.....can be a scary time. We don't feel like we're doing anything to battle the beast. I'm basically in the same place you are. Chemo finished in September. PCI finished in November. First CT following tx was in October and they could find no sign of cancer in my lung/chest or anywhere. NED. Great news!!

Now I'm due for the next CT in January. Not getting nervous yet....but I am much more aware these days of that sense of...."What might the cancer be doing if there are still micro cells in me?" I try NOT to focus on that....and as for the #'s or statistics on survival???? Fuggedaboudem~! They are only numbers and they have to do with OTHERS....not necessarily with me!

I'm still convinced that a good attitude is a huge help. Do I feel as good as I felt before my diagnosis? No. Not really. I have some sore muscles in my back that the rad onc says are from radiation. I'm bald and my ears get cold. I'm packing about 10 extra pounds of weight that slow me down and have reduced my wardrobe to pull-on pants with elastic waistbands. I get tired more easily than I used to and too, there is the mental thing of knowing that cancer is part of my life and might be for a long time.

But...none of the above is intolerable! It's just a bit different than what my life was like BEFORE dx.

Yeah....we've got a pretty bad disease. So do a lot of people who don't have cancer....but have had strokes, or have diabetes, AIDS, Alzheimers, ALS....you name it. Knowing the numbers doesn't do a damn thing for you but give you something else to worry about! Use that energy for something more positive....and forget the numbers.

And keep in mind.....the person that crosses the street tomorrow and gets sideswiped by that beer truck Becky is always talking about....has no CLUE about the stats on beer truck deaths, either! Nor did he/she care when he/she stepped off the curb!!

Some days I'm not such a cockeyed optimist myself....you know? Some days I nod off on the sofa feeling older than my 58 years. But for the most part I try to stay focused on all there is ahead to look forward to....none of which includes a return of my cancer OR more treatment....but IF that happens, I'll deal with it when the time comes.

For now...there has GOT to be something better for me to use my mental energies on than worrying. Same goes for you, schmaydee. And anyway, it's Christmas. If nothing else....go bake some cookies for your neighbors or donate a toy to Toys for Tots. It'll get your mind off the numbers in a hurry....I promise!

The best way to relieve ourselves of worry.....is to focus on someone else! Relax. Breathe. Find a new focus....and enjoy, eh?

[Justakid]

Schmaydee -

Although I have non-small cell, I wanted to give my opinion to your post.

I agree...I like to know the numbers too, regardless ofwhat they mean or who is included, I want to know the numbers.

WHen my treatment was over my doctor wasn't going to do any scans for 6-12mths. She said if it came back it didn't matter when it was caught! I left and have not gone back.....how can someone say it doesn't matter when it's caught?! It does to me!!!!!!! This is a nasty disease, how can they not do scans?! How can we not be monitored every three months.

I have a new oncologist and I had my first PET Scan last month. Although it did come back "hot" in the center of my chest both the oncologist and radiation oncolocgist agree that it's from the radiation. I will have another in three months. My doctor is proacive and does not want to sit around waiting for it to come back. I started Tarceva (new drug for NSC lung cancer), he hopes since it works for advanced stages, it will keep mine away.

I am not an optimistic person, I wanna know what I'm up against and go from there!

[Cindy RN]

Just a quick note about CT scans and PET scans. First-- the PET is very expensive, I do have insurance so that has not kept my Dr from using it. They show up live cancer cells-(usually) --by an injection of radioactive glucose into the body. Cancer cells suck up sugar! They then glow on the scans. The CT scan does show up masses or tumors-much less expensive--and yes, it shows scar tissue but after a few scans they show that there is no growth or sometimes if we are lucky they show a shrinkage of that area. Once in awhile they will do just a chest xray and it will show anything new that may have popped up-if it has then a CT is usually done.

Please do not look for numbers of how many make it to 5 yrs with SCLC because they are very grave, and as said before VERY outdated. They used to say this CA could not be cured and nobody lives free of SCLC more than a few yrs.Many of us have proved this WRONG. You are just now in NED or remission for a few months and it takes time to learn to 'live' with this.

Your body is going thru so much right now, I did not do PCI so I can not imagine how that must effect you. If you are unable to work, do SOMETHING. Volunteer at a local charity org. Nothing feels better than helping others. I pray that you will have a peace that will see you thru this.

Love Cindy

[Justakid]

Hey Cindy -

Any ideas on why they don't update the statistics? There have been so many developments and changes in the treatment of LC, seems that they should do some more studies and change things.

[schmaydee]

many thanks for the public and private posts.... ......s

[SDianneB]

Honestly, I don't know what to tell ya. It's a beech, huh.

When I first heard my diagnosis, the Pulmonologist gave me a number -- it was my statistical chance if I did nothing from that point. Obviously not good! So, once I committed to treatment, that number began to increase. When I had good days where I could work a full day and be somewhat normal, the number inreased. With the PCI, it increased some more. I have no idea what the number would be today, because somewhere in all that, I came to see this as a chronic disease rather than a death sentence.

When I began to see it as a chronic disease, the challenge became to do what I needed to do while I'm enjoying my life, rather than to think that I'm doing all this just to squeeze out a few more days/months.

The people I know who are cancer survivors tell me that your life will NEVER go back to even close to what it was before diagnosis. Never. I truly understand that now. A few years ago, my sister had a heart attack that scared us all. She knows it can kill her without warning at any time, and she does what she needs to do to stay as healthy as she can. But -- her life will never be the same either.

The both of us have these little clouds over our heads, but by golly, we have things to do, so we just try to manage our disease and go on with life.

I think you'll feel better soon, and once you feel better and get back to work and into some kind of routine that doesn't involve chemo or radiation, your outlook will change. It's easy to be bummed out when you feel bad. Hang in there!

Di

[Remembering Dave]

My Onc did not want to do PET scans on me either. I bugged him and bugged him until he finally started giving them to me. My understanding is that they can give false positives and false negatives so Oncs don't like to use them. Maybe you should ask this question to the "Experts" here on this site. As far as #'s go, I was a little obsessed when I was first diagnosed until my sister sent me an article which I will copy below. It is kind of lengthy and I had to read it a few times before I fully understood its message but basically it that as far as you are concerned, the #'s don't mean a hill of beans. I personally feel it is not good to know the exact #'s. You read and make up your own mind. Here is the article. I was NED and now supposedly I am NED again (still waiting on results from MRI taken this past Friday) I found it difficult to live with NED due to the #’s I had read about. It took me a couple of months to feel anywhere close to “normal” after my PCI. Hang in there bud, we are all here for each other.

David C.......................................................................

The Median Isn't the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo's Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I'm concerned, Gould's The Median Isn't the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, "the statistics don't matter," and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn't the Message is reproduced here by permission of the author.

--------------------------------------------------------------------------------

The Median Isn't the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.

--------------------------------------------------------------------------------

Postscript By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn't mesothelioma, but a second and unrelated cancer.

In March 2002, Dr. Gould published his 1342 page "Magnum Opus", The Structure of Evolutionary Theory. It is fitting that Gould, one of the world's most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman - but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn't The Message .

[schmaydee]

....to some extent i think the chief determining criterion for a lot of the stats is who's doin' the funding...not so much w/us cause theres not very many of us...and the money potential isnt there ....(like viagra or something) drug corps pay for most of it....

i was up until 5:00am last night.... up @ 9:30am...but i feel pretty good today...after a steroid induced episode of glutony w/christmas candy* and coffee......i'm bouncing off the walls...... and i kinda like it...

*people who make that stuff and give it to adults should be made to eat it all themselves.... .......s

[Cindy RN]

I have no idea who keeps track of the number of survivors with SCLC. There have been many new drug combos (Camptosar) used and better survival rates since then. I know I was told without treatment a few months, with treatment maybe 1-2 yrs. Well I love proving them wrong. I still believe the stats they use must be old ones!!

Good thing to get some of the org. to do is to have them update the numbers!

Cindy

[Mouse]

Schmaydee! From what I've read there are a lot of factors involved in whether or not you can outlive this stuff. That includes overall health, genes, diet, exercise, attitude and good care.

Through my "live" support Group, I have spoken to a lady who was diagnosed in 1988 and is alive and healthy. That is 16 years! Soon, I hope to meet her in person. Her treatment, at that time was painful. She was so sick! She did say that the most helpful part of her treatment was Yoga and meditation and exercise. It calmed her!

When she tells me all her secrets, I will tell everyone here! In the meantime, I will "live one day at a time and enjoy that day!" This in spite of being scared to death! "God brought me to; He will bring me through it!" Marge

[cindi o'h]

s..

I just wanted to say that your last post made me laugh. I can totally relate!! I am bouncing from the prednisone and sugar too. I have been on this round since before Thanksgiving.. ooohhhh it'll do stuff to ya! Buyer beware! (but necessary medicine).

Cindi o'h

[jcawork]

You my friend had the guts to ask us what we all wonder every day. I have wanted to ask, but was too affraid of the answers.

I also wish we had a survivor list, easy to read kind of thing. With all of our tx's its hard to keep up w/ the profiles. I however, have no idea how to start that and this board is so terrific w/ these volunteers who do it all (Katie and Rick). I don't know if they know what an incredible gift they gave to the world by doing this.

I am also freaked out, not as optimistic as some, but still hopefull-horribly realistsic.

I also disagree w/ the "trust your doctor" mantra. I was misdiognosed for almost a year by some very top notch guys. It happens every day. I trust they have more experience than I do, BUT I know I must advocate for myself and I must double check thier work as they are busy and I am not "special". I am one of hundreds of patients they are treating. They make mistakes all the time.

PET scans are now considered "norm" in dx and staging of sclc. There isn't a reason in the world for you not have one except you may have a Doc who doesn't understand them (technology) or know what the results mean-basically hasn't kept up w/ the newest advances. It just cant hurt.

Yes, they can have false positives, but when you get familiar w/ the PET world, you understand why and you are almost comforted by the PETS ability to overreact, to light up at any highly metobolic activity (arthritis, radiation fibrosis, neulasta shots, vacines etc) . Yes, it takes extra time and work to illiminate false positives, but I feel my PET/CT fusions (the newest version of PET where they combine both ) is well worth the time and energy. I deserve the very best, the newest testing resources and I will drag my Docs into the future if need be. Mine however, relies on PET/CT fusions to confirm CT results as CT can hide a few problems, are not perfect etc.....I would accept nothing less. They have to catch up and get on board w/ the newest technology.

False Negatives, this is bunk. If it lights up it something. May not be cancer, but its something. I have had spine arthritis, cytic ovarian disease, fibrosistic breasts and radiation pneumonitis light up. Cancer IS highly metabolic and lights up period! Cancer does not stay dark, its too active. Inpaticular small cell. Small cell has the ability to double its size in less than 30 days.

My advise, get a PET/CT fusion. You deserve the best that is out there. I also hope we can survive even w/ these bleak numbers. I agree w/ all that was stated about the stats. Also, my Doc pointed out that the stats tend to be for much older people. This changes the stats considerably.

Thanks for having the guts to ask what I have wanted to ask all along.

Jen

[Andrewsmom]

Just wanted to add my 2 cents. I have been NED since 6/02 - that is 2.5 years. I will be 3 years from dx next month and I feel great - strong and healthy and able to do everything I was able to do before dx.

There was a time when I was obsessed with finding survivors - I still am, to a certain extent. The longer I am NED the less concerned I get although the feeling can come over me at a moment's notice. When first diagnosed I would have loved to hear about someone who is like I am now - nearly 3 years from dx. Now I want to hear about people who are 4+ years from dx.

[jcawork]

Andrewsmom,

Thanks for the reply. It made my holiday!

Thanks for sharing that you too felt this way and still do sometimes.

Jen

[Geri]

Hi, yes there are survivors out there. I'm 3yrs from dx and saw my onc last week - another clean bill of health. I'm to see him in 6 months and have CT scan etc (that will be one year after the last) and then if all is clear, in his words, " we may just have to stop meeting like this".

I was dx Nov 01 and by Feb/Mar 02 my tumor was gone to the point that really only scar tissue could be seen. Due to allergic reactions and a couple of side effects it was a while before I was up to speed energywise but once I was I found that cancer became less and less the focal point of my day.

I didn't find this sight until earlier this year - I was having a pity party one day and researched online to find someone who understood how I felt. I found the support I needed that day and have tried to give it to others from time to time. I don't come to the site often, cancer is not as all consuming for me any more.

That will happen to you too, when I was at your stage I couldn't have conceived that I would be able to put it out of my mind this way, but it does happen. Cancer is no longer who I am. Before my tests and onc visits I get a bit anxious about all the "what ifs" but it doesn't last long. Maybe that's why so few survivors are around on the site, now that we don't have to take care of our cancers any more we are busy catching up on time lost to tx and tests and dr visits.

My wish for everyone on this site is that they have the same outcome as me, survival feels great and hopefully I've been able to help a few people to stay positive about their survival too.

Stay strong, I wish you the very best

Geri

[schmaydee]

..thats good to hear... i think if anybody makes it 2yrs w/o it coming back you pretty much have it licked.... .....s

[Geri]

hi, again. I've just read your profile and may I make a suggestion..........take off the (supposedly) from behind the NED!

The hardest thing I found was to accept that the cancer had gone, I kept thinking that if I said it too many times I would be tempting fate. I've now realised that I should shout it from the roof tops and if fate is tempted and it comes back then I'll deal with that the same way I dealt with the first one.

Heart disease used to be terminal now it's chronic, I prefer to think of cancer the same way.

Think positive

Geri