Remission or "cured"?

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    That blog article is not very clear. There are many factors to consider. I think he implied that the younger age is higher risk but at an older age if lymph nodes are involed the risk is up too.

    If you are older with no lymph nodes you might not be at a 40% risk.

    We really need more details to fully understand. Blogs are good to bring up quick topics for discussion. I would do a bit more research on what he really means.

    Even if that is true in your case, you can be one of the 60% that lives past the 15 year mark. Technically the odds are more in your favor.

  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Interesting topic. I like mathteacher's succinct " I have a history of cancer." True. My oncologist actually used the word cure as his goal in treating my cancer.  I was surprised when he said that.  It is my coping style to be cautiously optimistic, because I am triple negative. It's more about my way to gain some control, even though I am told control is just an illusion.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2010

    The way I see it, human science has no cure for invasive BC. Some people are cured, but we don't exactly know how. Just as some medicines do work for some in ways that are not completely understood. I will only know if my body beat bc if I die of another natural cause, and even then, there is no knowing whether some other malady simply beat bc to the punch.

    We have no way of knowing how our genes will interact with the environment to switch off the cancer, disable the switch, switch cancer on or tear out the page on which the cancer DNA's latest pernicious chapter is written. The treatments we have are Byzantine at best. No one should have to endure what we and other cancer patients go through.

  • msphil
    msphil Member Posts: 1,536
    edited September 2010

    Hello all, me myself use the term (cancer free) , for I have been so for 16 yrs and I,m gonna beieve I will be that way, and pass of,( old age), Affirmations (Positive) are what I choose to say and as God is my witness I shall Always be (cancer free) God Bless Us All. msphil

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    Hi All...

    The news story I mentioned will be an investigative segment on Fox News on Monday and/or Tuesday (I think it is 2 parts...duh, brain mal-function again) at 9pm Central Time.  The topic is concerning - Breast Cancer Survivor - What Does It Mean and What Can Be Believed'.  I would imagine it is likely to be on their web site as well.  I tried to find it but it likely won't be up until after it is aired. 

    Myself, I would really like to have a straight answer - 11 years ago after surgery and treatment, I was declared 'cancer free' and at the 5 year mark and still cancer free, I could consider myself 'cured' - I did a great big happy dance!  Then I found that was not the case - it can, and did, come back - not locally but a distant site in my bones - my spine is sprinkled with it.  Now, at stage iv with bone mets, I am considered 'terminal' but 'treatable'.  It may kill me or I may die from something else.  They tell me (my treatment team) that the goal is to keep it in my bones as the next great thing in bc treatment will make bone mets a 'chronic' condition rather than the death sentence it is today.  Not a 'cure' but a treatment that I will forever get that will allow me to live a long natural life with the disease. 

    I hope this program gives some answers instead of more questions that have yet to be conclusively answered.  It should be a good watch.

  • lago
    lago Member Posts: 17,186
    edited September 2010

    Too bad it's a Fox "news" program. Not my source of trusted information. Hope they don't slant this report next week.

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited September 2010

    I originally posted on the wrong thread - (there is another one about recurrence/survival rates.)

    Very thoughtful discussion - thanks winterstorm for starting it.

    I had thyroid cancer when I was 20 and I'm almost 60 now.  Having cancer shapes the rest of your life.  However, I can't say that it was 'always' on my mind -- just nagging reminders now & then.  I decided long ago to enjoy whatever time 'cancer free' and live life to the fullest - that there would be plenty of time to worry about it if it ever happened again.  During that time I was blessed with two children & a great career.  That's how I intend to approach it this time too - do what's necessary to buy time & live my life. 

    Lowrider - I think you are exactly right.  Research needs to focus on the "on/off" switches and individualized gene therapies.  Everything has happened so fast, I haven't had time to look into who/where that kind of research is taking place.   If anyone knows where, please post, because that's where I'm going to place my bet & donate.

  • Monty
    Monty Member Posts: 197
    edited September 2010

    Hi Ladies,

    I have found this to be a very interesting thread.  Many times over thelast 2 years friends and family have asked me pretty much the same question.  My Mom likes to believe I'm cured and I try to tell her as nicely as possible that there is no cure and there are no guarantees that this disease will not come back but I did the full treatment once and I'll do it again if I have to.  I personally tell people "I was diagnosed with BC in 2008"  that way I don't have to say cured or NED or in remission - as I just don't know? 

     When I was first diagmosed I thought I was going to die real soon, after all it is the BIG C.  Two years later I have a more philosophical approach, I try to live life and enjoy my family & friends as best I can because now I appreciate how fast your life here can be taken. 

    I do not worry every single day anymore, but I cannot say that the thought of BC coming back doesn't cross my mind.  For some reason I have a feeling that it's not if but when, maybe a few more years behind me and my thoughts on that will change also.

    Great thread Ladies, thank you

    Gaynor

  • Pure
    Pure Member Posts: 1,796
    edited September 2010

    What about my mom who is 34 years out? So she is not cured?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2010

    Fixed Noise always reports for the lowest common denominator, although I have to say it's cheaper than downloading articles from The Lancet Oncology for $30 apiece....

    Yes, fascinating thread, everyone. I suppose cancer is like a visitation - like a severe weather event that may or may not strike again. We have all gone through at least one hurricane here, and we are now "hurricane prone" some will be revisited, some already have and the rest may encounter an earthquake instead.

    The more I read the more I wonder at the similarities between cancer and an infection that responds to some antibiotics, not to others, does not harm and kills many. I wonder if when they discover a cure they will have a new classification for viruses/infectuous diseases. It is telling that there is a cervical cancer vaccine and that they may one day be a breast cancer vaccine.

    I am crossing my fingers and hoping that stopping smoking and taking vitamin D, in addition to the surgery, will make the real difference.

    Do the rest of you go through periods where you have wild and not-so-wild pet theories about cancer? I do, and my current pet one is that if I could somehow change the chemical composition of my body, the switch that Lowrider refers to might not be triggered..... 

  • changes
    changes Member Posts: 622
    edited September 2010

    Lowrider - is there actually a treatment in development (perhaps waiting for FDA approval?) that they think will turn bone mets into a chronic, but survivable condition? Please share about this!

    Thanks,

    Karen

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2010

    Pure

    I believe your Mom is "cured" I have had many conversations about this with top Oncologists, I work in Diagnostics. There are some that will be "cured" of this disease and some that wont. Just like many diseases, I have family that are over 25 years out and one that died within 4 years dx. There are "journal papers" and much research illustrating that 60-70 percent are cured with surgery. Yes CURED! It has not traveled outside the area. This is not just stage 1, I asked a panel of Oncs this very question and they state that yes stage 3 can be "cured" with surgery as well.

    The other 30-40 percent may have had cells travel out of the area and chemo may help or may not, there are new chemos, molecular chemos like Herceptin that are "thought" to be able to cure or create death pathways or as Lowrider states turn off the receptors. (this has yet to be proved as it is too new)

    It is wrong to believe some are not cured and I think the statement that everyone has stray cells is incorrect.  I know many with BC or have had BC, of the 10 that I know best "in person" 2 sadly passed (one stage 1). But the other 8 make up over 90 years of survival between them, one (26 years,one 23 years, one 18 years, and 16 years.  Yes it is true that it can come back after this time but all 4 of these women's Oncs state that their chances now are the same as the general public. (and 2 of these women were stage 3)

    Just in the way that it is incorrect for any of us to come on here and state that BC is curable in most cases it is incorrect for anyone to come on here and say there are No cures for any types of BC and I think that really dashes some of the hopes of those on this thread. I know it would have for me 1 year ago. This is a horrible disease ... and I know by reading the boards how many are suffering physically and mentally, it depresses  me consistently...that being said I hope all will know that much like many things there are good and bad outcomes here but lets not discount the good as well.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2013

    Some women are cured of breast cancer and some are not.  It is not an incurable disease, it's just that the medical community doesn't yet know how to tell who will be cured and who wont. It's a seemingly arbitrary disease with no guarantees -that's quite different from "no cure."

    My oncologist once said in passing that I was on a "curative path" for treatment, as opposed to a palliative one, and that's not an uncommon phrase, I've read it in the literature before.  Breast cancer can be cured, even later stage cancer.  In fact, most women end up cured of cancer.

    I think a lot of the discussion about this topic (not here, I mean - in the media)  is emotional as opposed to scientific.  I also think a lot of it is brought on by the Pink October hysteria and the false statistics perpetuated by the media during that month, and really - all year long now.  And, maybe the misinformation causes these types of arguments, with two distinct sides.  I think part of the goal is to create a belief that breast cancer is incurable, always lurking in our bodies, in order to collect more money..

    I find it very interesting that many patients refuse to use the word "cured" or even NED in regards to having cancer.  Some seem to want to hang on to that diagnosis, and some are able to let it go, and I'd love to talk to a psychologist or something to find out what personality traits make two people with the same information and who had the same prognosis and treatment react in such different ways.

    Is it the old glass half empty/half full thing?  Is one person more imaginative, imaging that lone cancer cell lurking to get them, while others  look to statistics? Is one just preparing for a worst case scenario mentally while the other is just ignoring the possibility?  Is there just a misunderstanding of the information?

    Anyway, I  think it'll be a long time before we find out why some people end up having recurrences or progression to later stages, if we ever do.  I think it's a complex interplay of genetics, environment and lifestyle and something that is going to take decades to tease out.  

    In the meantime - some will be cured.  Some will not.  My heart goes out to those who will not. 

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2010

    coolbreeze 

    Excellent Post! 

  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    For me, other's are more invested in hearing if I am cured or not.  I don't feel any attachment to the word cured, nor do I imagine a lone cell with it's own agenda.  I just want to feel better, and found treatment to be horrific.  I am invested in not feeling like that again.

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited September 2010

    I was thinking about the "stray cells" comment that somebody made...can't remember who originally posted that...anyway, I think it's important to realize that yes, there may be stray cells left after tx, but nearly everyone has cancer cells in their body.  Not just former cancer patients, EVERYONE.  Nearly all of us (as in all of us humans, not all of us cancer people) will have cancer cells in our bodies at one point or another in our lives, probably multiple times.  But some people's immune systems fight off the cells successfully, while others do not.   I guess my point is, so what if we have stray cells? So does everyone.  Does that really make us more likely to recur, especially when a lot of us have taken steps to change our lifestyle and bolster our immune systems?  What do you guys think? 

  • hrf
    hrf Member Posts: 3,225
    edited August 2013

    There is no cure. We just continue to hope. If there was a cure, no one would die of this disease. If there was a way to prevent it, no one would ever get it.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited September 2010

    I believe I am cured, and am moving forward on that assumption.  And I believe that I am part of the 50% of Stage IIb who was cured with surgery, and that all the adjuvant therapy was "just in case".

    I also believe that I am an extremely healthy person who was invaded and had to get her butt kicked to make sure it was gone.  I just had a physical where my Internist confirmed that I am still extremely healthy even after this significant butt-kicking.  He particularly mentioned my "strong heart".

    I do have to get monitored, but people get monitored for other medical stuff all the time.  No meds other than aspirin, anastrazole, and some supplements.

    I am moving forward with that assumption, as I am out there embracing life once again, picking up where I left off 13 months ago.  True, I lived as much as I could during treatment, but a lot more fun with my full energy back.  (Evolving hairstyle/overall look being an added challenge.)

    So doing things like lifting furniture at my friends' moving party.....which I need to get to Tongue out

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2010

    mmm5 and coolbreeze have it right. Some people are cured through simple excision; they just don't know who has benefitted. The psychological drama that is cancer --and the suffering from treatment-- is the cruelty to which we understandably subject ourselves out of fear.

    How about this: there is no KNOWN cure. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • lago
    lago Member Posts: 17,186
    edited September 2010

    Ironically when I asked my oncologist how would we know if the chemo is working. She said we wouldn't. She said if they knew for sure why some people never have a recurrence or spread then they would know who they don't have to give chemo too.

    All we can do is plan on benefiting from chemo or assume we could be the ones that have that special something that keeps cancer at bay. I'm assuming the later but just in case doing chemo and hormone therapy. Keeps those odds in my favor!

  • hymil
    hymil Member Posts: 826
    edited September 2010

    thank you for this thread, it's just what i need today. thank you all for your stories too.

    I'm exactly a year out from diagnosis and finished all active treatment 4th May this year: so I'm now [ NED / in remission / cautiously optimistic ] , and trying to move on with my life.

    On my way back from seeing the onco last friday, I found a great book (it would be more accurate to say the book found me) by a young guy who had survived bowel cancer against the expectations of his medical tream, he wrote it at pretty much the same stage I'm now at, and he also raises these questions. Latest update I can find is that he was still alive and very well last autumn at nine years out. For him it's a matter of faith that God has cured him. "It's finished, don't look back."

    I love his approach, I admire his faith and the way he has noved on. I'm very glad for him and his wife that he stays well, and is released from the constant fear of looking over his shoulder waiting in case it comes back, but it does raise so many questions.

    I'm really strugggling with this. Great if I'm cured, but then so why am I bothering with all the hassle of losing my [sadly under-appreciated] loveable-cuddliness, severely rationing my chocolate like there's a war on, and spending so much time at the gym that "Jim" shoudl really be my better half, why am i bothering to fight oestrogen? I say it's to do with changing the chemical makeup so that any stray cells will meet a hostile environment and not grow easily, but actually... Frankly it's illogical, it's because i chose not to do tamoxifen and will really have egg on my face if the thing does recur. Doing something, anything, creates an illusion of control, when in reality the long drives i do each two or three weeks are a much more present and acute threat to my wellbeing. I can't imagine that i will still be gym-hogging in ten years time!

    I have the same issue with aged relatives who would just worry if they knew I have had cancer: being practical so long as I outlive them it doesn't matter if im cured, what matters is not letting them down by expecting to be allowed skip out of visiting duties!

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2013

    hrf wrote:
    There is no cure. We just continue to hope. If there was a cure, no one would die of this disease. If there was a way to prevent it, no one would ever get it

    This is not accurate, and is an example of the emotionality I was talking about earlier.  

    You can't make blanket statement because breast cancer is not one disease. There are ER+ cancers, there are HER2+ cancers, there are Triple Negatives - we all know this.  There are different staging within each and many people will be cured.

    Cure means to restore to health.  You can't say that no breast cancer patient is ever restored to health just because some die of it.  

    I know many women who were diagnosed 20-30 years ago and are fine. Sadly, I see that some die too.  But, what happens with the one is not the same for the all.  Most people are cured of pneumonia too - but a few are not.

    ALS is not curable. Creutztfeldt-Jakob is not curable.  Both are not only not curable, but they are always fatal.

    The common cold is not curable, but nobody dies from it.  There is no known treatment to get rid of it, unlike breast cancer, which has numerous treatments.

    DCIS is stastically always curable.  Many stage I, II, III breast cancers are curable.   

    Like I said, the only way you know for sure you are cured of invasive cancer is to die of something else.  However, after a certain number of years - five being the magic media number but not really correct for everybody - your odds of being considered cured go way, way up.

    Sure, you hear stories about women who have it come back 20 years down the road.  There are always people who fall outside the norms, which is why you sometimes hear of a woman with DCIS who ends up stage IV.  It's extraordinarily rare but it happens.

    Because there are no guarantees, does not mean there is no cure. 

  • Laurie_R
    Laurie_R Member Posts: 262
    edited September 2010

    I agree with some of the other posters here, I don't think we are ever "cured" of this desease, I think we can be in remission.  Some just longer than others.  If we truely felt that we were cured then at the first sign of a twinge or acheing bones or a strong headache I minds wouldn't go to mets.  Just a thought.

  • Halah
    Halah Member Posts: 352
    edited August 2013

    Bumping up for breast cancer program. I personally don't have cable so I'd love to hear what y'all learn. I shall also check oiut their web site as well.

    Lowrider54:

    "The news story I mentioned will be an investigative segment on Fox News on Monday and/or Tuesday (I think it is 2 parts...duh, brain mal-function again) at 9pm Central Time. The topic is concerning - Breast Cancer Survivor - What Does It Mean and What Can Be Believed'. I would imagine it is likely to be on their web site as well. I tried to find it but it likely won't be up until after it is aired." 

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited August 2013

    Karenlen....both my onc and the doc that did my spinal bone biopsy indicated there was a trial (didn't say where or what) in its final phases that the treatment may well be available in 3 - 5 years that will make 'bone mets only' a chronic condition - always treated but survivable.  That was a year ago - where it stands now, I don't know - I have been a bit busy with treatment, life style changes, eating habits and progression and a change of treatment and trying to keep working, preparing for the potential of disability, putting my finances in order, redoing parts of my house to make it easier for me - if these next scans (in 2 months) show progression, it may be chemo for me but I do have treatment on Friday and will be seeing my nurse practitioner - she is a sweetheart and I will be certain to ask and see if I can find any more info specifically about it. 

    Also...I keep trying to find the study on the 'off' gene - I read so much and duh, bookmarks?  Think I can remember to do that?  I am now calling it 'fade brain' - the thought fades in and then fades out and I spend the day chasing it around until it decides to fade back in again! 

    I would really love to have some answer - good or bad - but an answer that is more black and white than this gray area we are all living in - someone agree on something and get this train moving in one direction - killing the beast, not just slicing it out of our bodies, killing it, deader that a door nail - whatever that means...

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    I really am not talking out of my hat with the off switch, it has been looked at for some time - and I was very excited to see the two most current things on it from Dana Faber over the weekend: 

    This appeared on Saturday, 09/25/2010:

    http://www.thaindian.com/newsportal/health/first-molecule-that-blocks-key-component-of-cancer-genes-on-off-switch-created_100434251.html

    And from the Science Daily - same research - http://www.sciencedaily.com/releases/2010/09/100924134953.htm

    I found some of my stuff on the 'off' switch theory - it has been going on since 2003 (that I started to notice) and the links above seem to be getting closer.  http://news.bbc.co.uk/2/hi/health/3236563.stm  This was my first read in the off switch.  More of the same for the next few years and then the US begins to take it more seriously in 2008 http://agedcareact.wordpress.com/2008/03/16/us-research-could-switch-off-breast-cancer-gene/  

    And we have seen this with the cannibis  http://www.examiner.com/cannabis-revolution-in-national/cannabidiol-researchers-discover-the-switch-to-turn-off-aggressive-breast-cancer-gene

    Seems to work in some bc cases http://www.healthtree.com/news/research-and-development/gene-mutations-point-to-on-off-switch-for-ovarian-cancer/

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    Bone Mets Studies:  Excerpt from an older technical paper - it takes so long for things to progress from development, manufacturing process to wider human trials to FDA approvals to us being able to take advantage of the treatment - this was at the clinical development stage in 2000.  http://theoncologist.alphamedpress.org/cgi/content/full/5/6/463

    This is what we know have as Zometa. 

    Zoledronate is the most potent bisphosphonate in clinical development,and in in vitro systems has around 100-1,000 times the potencyof pamidronate. A phase I study in 30 patients with hypercalcemiaindicated dose levels as low as 0.02 mg/kg (1-2 mg total dose)were effective in achieving normocalcemia [27], and a randomizedcomparison with pamidronate in hypercalcemia has now been completed.This has shown more rapid and complete control of hypercalcemiawith zoledronate at doses of 4-8 mg [28].

    In normocalcemic patients receiving zoledronate, a dose-dependentreduction in deoxypyridinoline, a specific marker of bone resorption,was identified. These biochemical responses were at least aslarge as those previously reported after infusions of pamidronate90 mg, and pain relief was impressive, particularly at the highestdose of 8 mg [15]. Recently, a randomized double-blind, dose-findingphase II study of zoledronate has been completed for the treatmentof osteolytic metastases from breast cancer and multiple myeloma,which defined a dose of 4-8 mg of zoledronate as appropriatefor phase III evaluation across the spectrum of metastatic bonedisease. Recruitment is now complete and results from thesestudies are expected next year.

    Ibandronate is another highly potent amino-bisphosphonate whichis licensed in Europe for the treatment of hypercalcemia ofmalignancy, and in late clinical development for both the treatmentof metastatic bone disease, and the prevention and treatmentof osteoporosis. Preliminary analysis of a phase III placebo-controlledtrial of monthly infusions in breast cancer has shown a significantreduction in skeletal-related morbidity with ibandronate 4 mg[14]. Additionally, a film-coated tablet has been developedwhich has been shown to produce a dose-dependent reduction,at doses that are generally well tolerated, in both urinarycalcium and collagen crosslink excretion [29]. Further developmentof this oral formulation is anticipated.

    For now, there IS always tomorrow...Initial dx 04/99 left mas, 4/20 nodes
    Diagnosis: 9/16/2009, Stage IV, mets, ER+/PR+

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2010

    Again Chronic is considered some types of BC or stage V, or Cancer still present ....if it has been removed and no remaining cells are left behind it is cured and research Med Journals prove that 60-70 percent are cured with surgery.

    Breast Cancer is not "incurable" some are cured some are not. I guess I am unsure why posters wish to come on this particular thread and state all BC is NOT curable when the literature proves otherwise. Like Lowrider states it may be a gray area and a matter of semantics but one indisputable fact is some BC's (types and stages) are curable. End of statement, there is really no interpretation on that statement.

      

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