Remission or "cured"?

Remission, Breast Cancer can come back after years of diagnosis and in any place of the body, this is the reason one has to be attentive to any changes and make sure to see your doctor yearly , or earlier if needed.

This IS a RANT, in part: 

mmm5 - The Topic of this thread is 'Remission or Cured' - a quite appropriate place for this debate.

You do realize that 'chronic' could mean that I am going to LIVE while cancer is still present in my body but with treatment, I may get to live with it and not find myself in the grave and get to die of something else - ripe old age would be nice, however, not likely.  

70% of BC is cured?  Ok, 1 in 8 women will develop breast cancer this year, that is roughly 13 out of 100.  Of that 13, 8 - 9 of them will be cured and never experience a recurrence but 4 - 5 of them will. 

I would love you to show me where your statistics come from, what reliable medical and scientific data you are siting and prove to me without any doubt or reservation that there is, in fact a CURE for breast cancer - not removing it, leaving a body 'cancer free' but something that actually attacks the disease, kills it and prevents it from ever, ever, ever coming back.  Show me. Show us so we call all take advantage of the 'cure' instead of being scared to death of a recurrence - erradication isn't a cure - it is removal of the cancerous lesion(s) and with clear margins and no node involvement, you may well live the rest of your life cancer-free.  You would be a true cancer survivor.  That would be like saying you had your foot amputated because it developed gang-green to save the rest of your body.  You no longer have gang-green but did it cure it or simply remove the infected part?  You survived it and live a long healthy life but would you call yourself cured of gang-green? 

I am putting my money in the off-on gene research that actually seems to be making progress in the ability to develop targeted treatments to prevent cancer cells from destroying the cells they invade offering a true 'cure' for the disease and not the present 'cut-it-out and its gone and call it cured' mentality. 

As annoyed and angry as I may make some - I am just as annoyed and angry at the medical profession for allowing so many women to believe that they are 'cured' and therefore are not as vigilant in watching for any and all indications that there may, just may be something going on that needs attention and by the time it becomes so utterly evident or some happen-chance test reveals an anomaly - this vibrant woman finds herself once again in the battle with the beast - only this time, erradication may not be possible and it is a fight to the death. 

Oh, by the way, after erradication (with removal of 25 nodes and yes, in 4) and chemo and Tamoxifin - at my 5 year mark, I was told I was 'cured' too - no evidence of disease.  I did the happy dance, continue my yearly mamo's, self examined my good booby but until my 10 year mark, it was not deemed 'medically necessary' to have any additional testing since I was considered cancer-free, NED, or 'cured'.  Funny, my breast doc requested a breast MRI because of my lumpy breasts to get a 'baseline' but I ended up having an xray first and low and behold...an anomaly, more tests, more funny stuff and finally a bone biopsy - bone mets after 10 years NED.  But I was cured?  Apparently not. 

So, am I just one of the unlucky 30 -40% that isn't really cured.  While it may look good to say 60-70% of BC are curable - I don't like the flip side that 30-40% are not.  Do you like the odds?  Personally, had I not been told I was 'cured', would I have maybe insisted on more thorough testing in those years?  Since there was no local recurrence, it was going to be mets but maybe only one small tiny one - who knows...and now from the program last night, they are saying that additional testing does not increase the overall survival and is medically unnecessary and only makes it more costly without having a significant impact?  WTF is going on?  It is my life, your life, our mother's lives, our sisters, our friends...'doesn't impact the overall survival rate' - that is a pretty good indication that too many women die too soon from breast cancer - 1 is too many.

Feel free to disagree if you believe that 30-40% of women diagnosed with breast cancer this year are likely to die from the disease (and NOT something else) is ok as long as 60-70% are 'cured'. That additional testing for those 30-40% would be medically unnecessary and too costly as it won't improve their odds of survival.  I shouldn't have read the article, I don't know what to believe - now I am madder than a wet hen in a coop full of roosters! 

My primary care Doc says early stage breast cancer is very curable. We just have no way of knowing which of us are cured at this time. I have to believe she is correct, as does she, as her mother has early stage breast cancer too...

lowrider54 - thanks for a great post!  It really puts things in perspective. 

I think people are getting caught up in wording.  There is no cure for cancer.  I think we can all agree on that.  However, yes, you CAN certainly be cured of the cancer via surgery.  The surgeon has cured YOU of the cancer, not cured the cancer itself. 

I think you either have cancer cells floating around, or you don't.  If you get a distant recurrence, then you've always had the cancer cells and now they are showing up as symptoms or on tests.  If you don't have the cancer cells after chemo and/or surgery, then you are cured.  As mentioned previously, there are lots of people who no longer have ANY cancer in their body, and will NEVER get a recurrence.  We just can't figure out who does and who doesn't.  I was told it was likely I was cured at surgery.  Am I cured?  I have no idea, I guess I will know in several years when I either get mets or I don't.  I am 35, diagnosed at 33.  If I live to 80 and die from something else, I am pretty sure we can call that "cured". 

mmm5 - I was stage II once too and thought I was cured - happy, happy - I do not mean to scare anyone - just be vigilant about yourselves - don't count on the medical community, trust your gut.  Just because I am stage iv now, my experience at stage II is irrelevant?  This board wasnt' here for my first time around or I would have been on it.  My cancer free 10 years mean nothing?  Being told I was cured has no bearing here? 

I am only a year new to mets - and I have googled and googled until I was googled out for 11 years - since I was stage II.  I have a 3 drawer lateral file filled with studies and documentation and findings and research - the result of my googling was a resounding - no known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence. 

Semantics are important - this is where I disagree - one could walk away thinking life is all fine, as I did and miss a miniscule clue to may have lead to an earlier dx that may have more easily been treated than what I face now. 

If I can educate 1 person - just 1 person and that one person does NOT end up with mets...then all this banter was worth it.  I am sorry if this offends - I just cannot express enough how much it matters that I never want anyone to ever end up stage iv that could be prevented from doing so by a adding a little bit of 'awareness'. 

I am not alone in my opinion, by the way - there are a growing group of us from around the same time frame that wish "If I had known then (at the early stage dx) what I know now (at the mets dx), I may not be a stage iv today".  If that makes this 'personal', then it is.

I found nothing that statistically supports your statements of facts.  I am concerned that too many will rely on they are 'cured' and find themselves in utter horror and disbelief and feel cheated and lied to that they were 'cured' - it can't be back rather than be viligant and err on the side of caution to avoid those things that could decrease the odds of living cancer free for a lifetime. 

Again, I say as a matter of fact based on 11 years of research from every available source I could find - the compiled overwhelming majority states:    No known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence.  Therefore, there is not always a stray cell. 

I've been reading this thread with great interest and I thank all of you for your POVs on the matter and for the information (where there IS information) as well.

Lowrider - my heart aches for you having recurred to stage 4 mets.  I just finished my Herceptin so I guess that means I'm a year out (I had two lumpectomies, then CHEMO, then my MX -- by which time the tissue removed was all NED)... which I recite to say: I'm still close enough to the whole experience that I don't feel like I am cured though of course I was thrilled to hear the NED pathology.  So I am cautiously optimistic -- and occasionally I live life without a care or a worry and that is countered with days of great worry -- most of the time though I'm just in a careful state of mind, maybe even an NED state of mind (which is not a cured state of mind).  I address all of this to you because I wondered -- since, if I read what you wrote right, you seem to feel you ignored a sign/symptom -- what was the symptom you ignored?

Thanks all for this very worthy subject. 

Lowrider - thank you for your excellent posts.

I saw my oncologist Monday and asked him this question. When I was first diagnosed he had told me that "we don't use the word cured anymore" and I had too much information to process to follow up with that at the time. He explained to me that with breast cancer (and melanoma) they do NOT consider them to ever be "cured" because both are prone to "late relapses." With most other cancers, if you make it to the five-year mark, your risk of relapse goes down to the same as the general population. This is not true for most breast cancers. That does not, however, mean that it cannot be successfully treated, particularly in the earliest stages. He also noted that it is impossible to determine WHO will be successfully treated and whether the cancer is actually gone.

I am one of those fortunate "Stage I, grade 1" people. But I get what Lowrider is saying - there is no guarantee in being stage I - I could be diagnosed next month with Stage IV - or I may never have another incident of cancer again. Odds are in my favor - low oncotype score,  no nodes, etc, but I do not  consider myself "cured". NED, yes; cured, no. Not unless they actually can come up with something that can TELL whether there are stray cells lurking dormant somewhere or actually succeed in coming up with that "off" switch that can make sure it will never metastasize. And I agree with Lowrider: 30 - 40 % having a recurrence are HORRIBLE statistics.

Karen

((((Sharon/Lowrider)))) I think I'm gonna go throw up.

Many people will live their lives with out having to deal with cancer again, true.  But, many people won't.  That's a fact not an opinion and I the reasons behind that are not going to be sorted out on this forum.  When I spoke with my primary care Dr. about this very topic....he said once you have been diagnosed it is deemed that you have cancer cells lurking.  He stated that very bluntly.  Where the dice rolls...who in the h*ll knows.

Lowrider, I agree with you completely. Breast cancer took my mother, my mother-in-law, my daugher-in-law's mother, and 4 close cousins. Most were caught early and some heard the word "cured" .... but clearly not. Until women stop dying of this disease - and I mean 100% of them - I cannot consider that there is a cure. ......and not only that.....even if you think you're cured (as I did once) it sneaks up on you and gives you a second dose...not mets....just another go round of surgery, chemo, rads etc. etc etc. I am glad that many more women survive now than they did 25 years ago but that is little comfort to my DIL who's mother died just a few months ago after being "cured" of stage IIa for 8 1/2 years. I have no need to convince anyone else ..... we can all believe whatever works best for us. And if it works, then it's good. I'm not interested in arguing different points of view.

All I know is once you've been diagnosed with cancer the insurance companies consider you un-insurable (right now) if you need to buy a new policy. Do I believe that some people will never have an recurrence, yes. Does it matter if I call them cured or NED, no. What matters is these NED or cured folks are living their lives without having to deal with cancer treatment.

Re: No known cure but it can be erradicated entirely if found very early leaving one to live cancer free for a lifetime without a recurrence.

I totally agree with this statement. It's a bit of a crap shoot, and until you die of something else, impossible to say for sure. Frankly, no one knows what the future will hold. My mom is now 20 yrs out from BC and has never had a recurrence. I'm 10 months out, and although I want to believe my onc who has said to me "you're cured", there's still a little part of me that wonders about whether there are some lurking cells. But such is life........there are NO guarantees. As long as you're NED, no reason to go looking for trouble. Be vigilant, but don't obsess, and live your life.

((Lowrider)) and thank you so much for all you do, and for sharing your research, and your heart.

I think I'll get a dog and name him NED; no one will think I'm too crazy when I go around singing "Here, NED.."

Winter..I think you have the right attitude...ok..maybe there is not a cure..but I know several women that have had breast cancer years and years ago and they are just fine...sadly I know of several women that have died of this disease also...you just can't think of it every day...I know how hard it is to NOT think about it..but you can eventually put it in the back of your mind and MOVE ON..you have to..we all just have too..IF the junk comes back..well..we will deal with it then...there is no way, no how we can sit in a corner and freak out about it..easy to say...harder to do..from your signature you are basically a newbie to this..I'm 18 months out and it does get easier....I really don't have time to focus on it so much anymore..got kids, a job..a wedding to plan, a good DH...I want to put cancer in the closet..hopefully I don't ever have to get it out again...