I think it's very important that, when discussing "cure" for stage IV, we define what we mean by "many." It's a nebulous word that really, push come to shove, means very different things to different people, and IMO, it's too carelessly used when it comes to stage IV CRC and the word "cure."
Many (more than some, fewer than a majority) of us are surviving
longer with stage IV disease. But there is a huge difference between surviving for a longer period of time and being "cured." For me, to be cured would mean that the disease is gone and it doesn't come back. Period. I am not so willing to take this definition as a "cure":
fcancerIsay wrote:Of course, it is all just semantics, but being deemed "cancer free" or "without evidence of disease" at any time after an initial Stage IV diagnosis is to be "cured" in my book. And, stubborness and determination are traits that I believe do help to get you there!
FcancerIsay, you are relatively early in your life with cancer. I was dx'd in stage IV and initially ruled inoperable. I know what it's like to long to hear the report "NED" - and how some people will never hear that. I'm also quite possibly one of the most stubborn, determined people you'd ever meet. I'm still dying. The drugs have stopped working, even though I was stubborn about pursuing any reasonable option.
In time, you might want to rethink whether you still feel that NED = "cured." Maybe after you're NED for 21 months, only to have a locally advanced recurrence and a third major surgery. Or maybe after your docs discover a second inoperable, untreatable bone mets recurrence following 34 months NED - maybe then you won't be so willing to equate NED with "cured." NED is a nice place to be...but I promise you, it ain't "cured." Not by a long shot.
But back for a minute to the casual mis-use of the word "many" referring to stage IV CRC survivors.
"Many" is relative. Use it to refer to 36 people out of 100, and yeah, I'll give you many. Use it to refer to 36 weeks compared to 36 MONTHS or better yet, 36 YEARS of cancer-free survival, and I bet you'd get a very different reaction. But that's the thing - doctors say that they can, with treatment, help patients live a productive life for a long time and patients HEAR a time frame that is far longer than the doc has in mind. Patients hear years when the doctor means months, or maybe even weeks. Patients hear that someone knows "many" patients with stage IV CRC who are living "many" years and I wonder if they're asking themselves in what context "many" is being used.
I've been around cancer support boards since my stage IV rectal cancer dx in 2004. In those 8+ years, I've met (in person) more than a dozen stage IV patients who survived for an extended period. I've only met, in real life, a handful (fewer than five) people who have lived for more than 10 years, and MOST (3 out of 5) have not been cancer-free for that entire time. A couple of them have NEVER been cancer-free...they have survived those X years since dx, but they've had active disease for all or most of that time. I'm not talking song-and-legend people (I know a few of them, too.) I'm talking real, breathing people who I've met, had dinner with, hugged, etc. So "cured"? Nope. Many? when compared with the number of new cases of stage IV CRC that will be dx'd this year and the number of stage IV patients who will DIE this year? Hardly.
fcancerIsay wrote:This is the thread I have been looking for! It is so important that Stage IV's let us "newbies" know that they exist and are living their lives many years after having been diagnosed with not only cancer, but Stage IV cancer. Current statistics for Stage IV's are not what they should be and aren't really even up to date, which is why I have joined this forum.
I agree that finding others who have lived what you are living is important, but please don't lay that burden to fulfill what YOU need on stage IV patients. First of all, in proportion, support forums typically have more stage IV members than members of other stages. Second, a whole lot of us, MOST of us, are in active treatment or living from scan to scan in follow-up. And like to admit it or not, most of us don't live "many" years (more than 5) after having been dx'd so we can't be here to hold the hands of more newly dx'd stage IVs forever. Most stage IVs live the median or maybe, if we're lucky, we live a bit longer - and median is still, legitimately, somewhere around 3 years after dx. (Many? do you consider 3 years "many years"? Nah, I didn't think so. It's "many" compared with the prognosis 20 years ago of less than 6 months, but it's still not "many" as a measure of time in the minds of most people.)
I don't know what you mean exactly when you say that current stats aren't what they "should be." If you want up-to-the-minute survival stats for every variant of stage IV...well, that is an impossibility considering the numbers involved. But OTOH, current stats for stage IV patients (from the NCI) are as current as possible - and they still reflect an amazing accuracy in life expectancy for most stage IV CRC patients. Those who surpass median life expectancy are still the exception, not the rule, and are often special cases who qualify for special, newer surgical treatments.
But one very simple example of life expectancy is right here for you to see if you choose to see it. Search for the "In Memoriam" threads, which some of us have tried to maintain since 2009. Take a look at the member profiles, the year dx'd vs. the year of the poster's passing. Better still, go read the two current
threads for members who have passed within the last couple of days. Matthew lost his wife yesterday (May 30.) She was dx'd a year ago.
fcancerIsay wrote: I want to hear what Stage IV's out in the trenches of this battlefield have to say. Can a Stage IV ever be cured?
You may say you want to hear it - but you're gonna have to take your fingers out of your ears and stop singing "la la la, I can't hear you." Can a stage IV ever be cured? I've heard of a guy in Australia who had 5FU (and only that, and surgery) for his stage IV colon cancer more than 20 years ago, and has had no evidence of disease ever since. I know of a couple people who are 10 year+ survivors who, after their initial treatment for the disease (5FU, surgery) have been cancer-free. Are they cured? Maybe. But are they "many"? Um, no. I know that's the title of this thread, but most of the people who are still posting and still alive today are survivors
- not yet cured. And many (truly many, maybe as many as half of the posters) have passed since they posted.
Anita was my first buddy (hi, Anita!), dx'd about the same time as me and the person who talked to me about the HAI pump surgery. Suzanne Lindley, who's survived 13+ years with active disease the whole time, is the survivor who set me up with Anita as a buddy. I'm happy for both Anita and Suzanne - happy for each of them every day. However, I had periods of 21 and 34 months NED, I'm 8+ years out from dx and while my liver is fine, chemo is no longer working and there are no treatments left for me. My bone mets are increasing in pain, and I can only assume that my lung mets (which were small but growing in December) are growing because I'm no longer in active treatment.
I did a fine job of surviving for the first 8+ years...but now, I'm not living with cancer - I'm dying
of cancer. I'm not "cured." I'm not going to be "cured." I'm likely not even going to be NED again. So can I answer whether stage IV can be cured, or even read the question without tears? Nope. I've mourned the loss of far more stage IV friends than I've been able to celebrate long-term survival.
say to me, "surgery is not an option for you". They
say, "you probably only have 2 - 3 years". I
say, "La, La, La, I can't hear you"; "La La La, I can't hear you"!
FcancerIsay, you do whatever it takes to get you through the day. But please remember that at the end of that day, cancer will have also done whatever it needed to accomplish its deadly goals - and it doesn't care if you don't like the stats; or if you're stubborn, determined, religious; or if you'd rather say "I can't hear you." Cancer doesn't need your participation, consent or active engagement. Cancer does what it will, and modern medicine can only accomplish so much.
And like it or not, most of the time for stage IV patients, what modern medicine can accomplish is not enough.