Remission or "cured"?

Halah

If there are no signs of cancer, is it called "cured" or "cancer free", or "in remission"? If "in remission", is it still cancer?

What about after 5 years? 10 years?

Twinmom77

I have no idea what the "official" word is on this.  I can bore you with my opinion   For me, as a stage I or II person, " in remission" means I had cancer once, I don't now, but I expect it to come back.  Since I choose to believe it won't come back, I don't use the term "in remission".  The mind is such a powerful thing and I truly think that what you put your whole heart into believing and feeling will come to fruition, no matter if what you believe is good or bad.  I've witnessed this too many times to believe otherwise. This is not to say that I don't have bad days where I have a weird headache and I'm convinced I have brain mets, but for the most part, I choose to believe that I am cancer-free and healthy and will remain so.

gfbaker

The official term these days is NED: no evidence detected. But use whatever works for you!

lago

I though NED was  no evidence of disease.

There is no cure for breast cancer… yet.

VJSL8

I was a cancer "survivor" for 22 years, 10 months and 27 days (stage 2), now I'm a cancer patient again (don't know the staging yet and was told it's not going to be exact--since they took all the lymph nodes the first time). They are calling it a reoccurance. So for a very long time I thought I was "cured", now I know for me, there is no such word. Over the many years, whenever I had anything medical come up--the first place the doctors would go is--lets make sure it's not cancer. I would poo-poo them thinking they were over cautious but now--I'm so glad they were over cautious. My reoccurance is very small and hopefully contained (Just had surgery last week, don't have path reports yet).
I too, believe in the power of the mind, so I choose to believe that this is just a "minor" case of cancer,  a "minor" inconvenience. Have a joyous day, VJ

Lowrider54

As of today, there is no cure for breast cancer in any form.  There are extremely effective treatments that can place the cancer cells into an 'inactive state'.  The treatments can 'heal' the affected area and there are preventatives as well.  This state would be NED - 'no evidence of disease' where in other cancers, it would be determined to be in 'remission'. 

Sadly, there are still microscopic little teeny tiny bits of it still floating around that cannot be 'seen' by any of today's technology.  It seems in the current research (not quoting but summing up my reading) that breast cancer would appear to be 'trigger-based' - something (and they have no idea what or how) turns them on and they grow.  Something in the treatments is able to turn them 'off' although it is unclear how exactly that works as it works in some but not in others and more effectively in some and not at all in others.  A group in Europe believes they may have discovered a gene in rats that seems to be an 'on' switch - their research is now how to turn it 'off'.  This is one gene which carries one type of breast cancer - there are many types of breast cancer - this would only be a 'cure' for one but may lead the research down a path that could actually discover how to isolate the 'on' switch for many and lead to how to turn them all off.  This is where I want the research money to go - to the source of the disease.  The new 'targeted therapies' are based on this hypothosis and although reaching more people, has not yet become the wide-spread accepted treatment of choice. 

Whatever the case, survivors experience extended periods of time with NED because of some yet undiscovered reason that the cells are not 'triggered' to grow.  A recurrance happens when that unknown switch is turned on and they grow.    As VJSL8 wrote - she has been NED for 22 years, she is experiencing a local recurrance and hopefully it will be contained and 'turned off' again. 

The mind is a powerful thing...I believed that after surviving 5 years NED, I was 'cured'.  I believed that whole heartedly and went into my 10 year full body scans with the idea that I could celebrate - I went on my birthday!  I am now stage iv with bone mets.  I believe I can treat this and keep it in my bones until the next great thing in treatment comes along that will make bone mets a chronic condition and although still stage iv, it will not be the death sentence it is today.

Sorry to bore ya'll with my opinions but we are on the verge of the 'Pink Parade' and awareness of the type of research is where the dollars should be going is of the utmost importance - the world is overly aware of Breast Cancer - lets make this years goal to begin the march to never hear of it again.

Anonymous

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mmm5

I don't agree with the statement there is no cure. Actually approx. 60 percent of breast cancer is cured by surgery, that is the cancer was contained and removed at time of surgery. Some small cancers that have not yet travelled to the lymph or vascular system can be removed surgically. Many researchers are also stating that some of the molecular chemos, such as Herceptin can also offer a cure, Of course it has not been around long enough to prove otherwise but Herceptin does offer death pathways for any remaining cells. Also the thought that highly aggressive BC's (ie Her2 and Triple neg) that don't recur after 5 -8 years are thought to be "cured" per both of my Oncologists. There are many women out there that have been NED, or Cured for 20, 30 40 years. My aunt is 26 years and my aunts sis n law is 33 years.

jancie

Personally I don't use the term "cured"  I tend to lean towards saying I am in remission.  The reason why is that at any time I can get it again.  It may be 2 years from now or 20 years from now or I may never get it again but nobody can guarantee that.  Look at all of the beautiful women that have gotten it again a 2nd time around. 

changes

Lowrider,

Thank you so much for your thoughtful post! Your post said what I had begun to deduce from studying up on this, and what oncologists seem to not want to say out loud. At my first meeting with the medical oncologist, he made the comment, "We don't use the word 'cure'" anymore, but I had so much information I was processing that I didn't follow up with it then.

I guess we all have different ways of coping. For me, denial has never been a particularly useful coping skill. I prefer to know what I'm dealing with, figure out what I can control, and what I can't control, and proceed accordingly.

Thanks again!

Karen

changes

Here is a quote from Dr. Susan Love on this topic:

"Breast cancer can be cured. In fact we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can't tell that woman that she is cured, until she dies at 95 of something else. So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time."

Lowrider54

mmm5 - If there is a cure, why do 40,000 women die each and every year from breast cancer?  Herceptin is a tremendously powerful drug and can offer a non-recurrance for many many years or never.  As mine was contained and removed at the time of surgery, the prevailing thought was if it did not recur at the 5 year mark, I was 'cured'.  Not the case.  At the 10 year mark, its back and in my bones and it will kill me.  Where is my cure? 

While it is true many women will never experience a recurrance or be NED for a very long time, there is something in the genetic makeup or better reaction to treatment that allows that to happen.  With 1 in 8 women that will develop breast cancer this year, a true 'cure' would mean that not 1 of them would die from it.  It remains a mystery - one that even many in the medical community have differing points of view.  If there was a real 'cure', why does the pink keep racing/running/ walking for the discovery of the cure? 

Your family must have the right genes - bless you...I hope you never have to take the cruise on the SS Mets!  Anyway for you to share some? 

Hugs and continued wellness to you!

Bren-2007

My radiation onc said I was cured.  My surgeon would not use that term.  To my knowledge, I am cancer-free at this time.

Just after I was diagnosed and before treatment, I was talking to my sister about the whole concept of survivor.  I didn't get it or why women referred to being a survivor for X amount of years.

She then said there was no cure.  I have never forgotten that one sentence.  If there was a cure, then I wouldn't be so frightened that it might come back.

JMO.

Lowrider54

Oh, by the way...I am totally NOT a fan of the 'Pink Parade' - although I am grateful for the much kinder treatments that are available to me today due to the money raised by the pink. 

Annabella58

I used "cured", as I don't want people to worry about me.  Felt kind of dumb when we had a 5 year "cured" party, and then I got it again the very next year.  People kept saying "but we just had your party!" (as tho it was my fault, or like the party was some kind of charm).

That said, the mind is super powerful.  A bus could hit you tomorrow.  Life itself is a fatal disease.  Many women have horrible metastises and suddenly go into remission and live another 35 years (my aunt, pancreatic).  People with gorgeous cholesterol, perfect blood pressure and strong bones have heart attacks and die.

 Here's the thing, after 5 years, even after 3 years, both times I have noticed that the "red flags" drop a bit.  They are still cautious up til the two year mark, but they do seem to quit overreacting so much.  I don't mind, I'm here due to an overreaction on the part of my oncologist for an MRI.

Look at Lance Armstrong.  No one knows.  But after 5 years, go have the party!!  You cannot live looking over your shoulder.  Live like life is NOT fatal.  Don't wait for it to be 5 years NED.  Let's just say you are in full remission.  That sounds nice .  Declare yourself to yourself that you are cured and then believe it unless your body tries to show you otherwise.  If it does, you'll deal with it.  Eat the cake.  Drink the glass of wine.  You are here now and it sounds like the news is good for you.

Lo Rider, may you be well, get into remission and stay there, hon!!!

LuvRVing

I agree with "there is no cure" at this time.  You can argue that if someone lives to a ripe old age after breast cancer, they must have been cured...or whatever triggered the first event never recurred.  It just happens that I wrote a blog about this topic earlier today:

 www.mch-breastcancer.blogspot.com

I'm hoping for a cure...the one that ensures breast cancer will never affect me again and that future generations can look forward to never facing this ugly beast. 

Right now I think the best we can expect is NED or remission.  But some day...

Michelle

Lowrider54

annie...I was just coming back to post a more positive slant and here you done did it already!  Yes, I lived after the 5 year mark without looking over my shoulder waiting for the other shoe to drop. I went for my testing but I was so certain, that it became routine and to say it never entered my mind would be a fib but it sure wasn't the first thing I thought of every morning.  I always made the bus comparison and still, even now with stage iv mets - it may not be what actually kills me - life itself is a roll of the dice.

But, if your body starts talking to you...listen - we were chatting about 'if I knew what I know now back when first dx'd 10 and plus years ago - we may not be stage iv today'.  Perhaps if I wasn't treated as a 'wait and see' that it took 10 months from when I found the lump until surgery and treatment started...I may not be stage iv today. 

Today, my mind is going to take control and since it is only in my bones, it is going to stay there and I will have a 'chronic condition' that will require treatment for the rest of my life but it will be a long life - not 'cured' but treatable, very treatable.  A snuggle with the Stable Boy would be nice followed by a long, slow dance with NED. 

Live like it isn't coming back - don't think about it or worry yourselves...trust me, you will have plenty of time to have that lovely added feature if it should come back - no need to waste the good living time on it now!

Here's to the end of it for everyone - in our lifetimes!

mathteacher

Okay, I'm putting on my math teacher hat here. For once it came in handy.

 Both "I'm cured," and "I'm in remission" are statements that can't be proved. NED is a medical, "damed if we know" statement.

The only thing we can say with accuracy is that we have a "history of cancer."

mmm5

Lowrider

Unfortunately the "genes" are not mine as it is my Step Aunt. The genes in my own family actually did not work out as well, Paternal Aunt died of BC within 4 years of DX. (so I don't have my head in the sand)

I hope I didn't offend with my post and if so I apologize, obviously semantics can be interpreted many ways. However I did not mean to imply that there is a overall "cure" to bc.... you are right women are going to die of BC. 

What I intended to say in my post was that there are those with BC that will not have it return and many view  that as they have been cured. My Onc who is nationally respected at a teaching hospital states the same as Dr. Love, we do cure BC in some cases with surgery, and some times with chemo, however we don't know of that cure until she dies of something else. I think we need to let women out there know that there is hope that they may not have a recurrence and in some cases their BC has been cured. It sucks to have that question mark hang over your head your whole life but in many cases it has allowed many to find more value in life knowing there is that question mark.

In the end it is all semantics but I will tell you that in the literature and research papers and Many Oncs will tell you that statistically 60-65 percent of BC is cured and that number is rising. Cure, Remission for years until you are die of something else, whatever word you want to use it means the same thing in the end.

Annie thank you for your wonderful post! 

momand2kids

I think everyone has to use what works for them.  My oncologist's first words to me were "this is 2009 and we cure breast cancer... you are likely cured from the surgery and the rest is insurance".  that mattered SO much to me at that moment.  Of course, I know it could come back, but for me (and I stress, this works for me, may not for others) I consider myself cured.  that does not mean that I am unrealistic, but I live my life as someone who had a run in with cancer and it was taken out and that is that... I could choose to live other ways, but this works for me right now.  Maybe it won't in the future-but I agree that the mind is very powerful---- and for me, that power has been in using the term cure.... again, just works for me..... I am planning to die at 95 of something else!!!

SunnyCoconut

My oncologist said, "You don't have cancer anymore, we removed it and it is in some pathology lab somewhere."  My surgeon said, "It's gone, you are a survivor!"  So I just tell people "it is gone."

Lowrider54

mmm5 - rats...I was hoping we could use your family for a 'gene pool' - sorry, sometimes my humor is a bit warped.  I tend to get this way right before the 'Pink Parade'...the statistics they use to raise money - yes, money is needed - but I so think it gives a warped view - they would never indicate that 60-65 % of bc is cured - who would see the need to donate money? 

My father died of colon cancer but that was not what was listed on his death certificate - liver failure was the 'official cause of death'.  There was no autopsy...unless we wanted to prove that the cancer was the killer.  He died of something else but that something else was a direct result and caused wholely by the cancer. 

I am thankful that more and more women and men are living longer and healthier lives after a cancer dx.  There is hope, a lot of hope and for early detection and treatment, the best hope of all.  Annie has the right idea and inbetween my rants...it is the way I live - I have a wonderful new respect for life and people in my life and I value things in ways I didn't before - not in a monetary way but in the true value of my family and friends that cannot be replaced.  There is always and forever hope and it keeps me going everyday.

Another down side to the statistics is people that knowingly let themselves die.  I have known some women personally that continued to live in denile until it was so deeply invaded into their tissues before seeking treatment and of course, it killed them.  Oddly, although respecting their choices, I could never understand that to choose death over life was a proper thing - over vanity?  In my small world, I have known 3 women pretty well that elected their boobs and hair over the possibility of living longer.  One started treatment (no surgery) and quit, one finally consented to surgery but refused treatment and the 3rd only accepted treatment when she realized she was going to actually die - she was gone in 4 months.  This type of person alters the statistics too.

Anyone when first dx'd should never find the statistics - find this site and come here - the darn things will scare the beegeezus out of you! 

MarieKelly

Lowrider54 wrote: mmm5 - If there is a cure, why do 40,000 women die each and every year from breast cancer? As mmm5 already mentioned, surgery cures a large percentage of breast cancers.  Additionally, chemotherapy cures some as well.  If the cancer is COMPLETELY excised  before it has a chance to spread anywhere beyond the breast, then it's cured.  Just because someone might again get another localized breast cancer in the future doesn't necessarily mean that the original cancer wasn't cured.  If complete surgical excision prior to spread wasn't accomplished or if the "horse was already out of the barn and running off to distant pasteurs" when the excision occured then no, surgery alone wouldn't have cured it and systemic treatment is needed and may or may not cure it.   For those people, NED is a more appropriate description.  But for those who have had the good fortune to have their tumor completely removed prior to it spreading anywhere, then "cure" is the best description. Many people, both young and old, die of bacterial pneumonia every year but to say bacterial pneumonia isn't curable just because some people do die from it is akin to what's being said about breast cancer not being curable. Breast cancer is a highly heterogenous disease and some people can be cured and some can't.  Saying breast cancer isn't curable is an extremely broad, generalized statement that only applies to a limited segment of the population who get breast cancer.From the perspective of those who are stage IV, those who may have had a locoregional recurrence of their original cancer despite follow all treatment recommendations and those who have watched friends or family die despite all attempts to prevent it,  I can understand the skepticism regarding the cure of breast cancer.  It's all a matter of personal prospective.   But in reality, more are cured than not and the mere existance of those who have had breast cancer in their younger years and then lived out their lives to a ripe old age and die without any evidence of breast cancer completely contradicts those who insist breast cancer can't be cured.  EDITED TO ADD  - Lowrider, In your explaination of why you feel that everyone who was ever diagnosed with BC is never cured but rather is only NED until some as yet undiscovered reason triggers a regrowth, you gave VJSL8 as an example as someone who is now having a local recurrence after 22+ years.  I can't help but wonder - did it ever occur to you or anyone else, that a local recurrence after so long a time might actually be the carcinogenic result of the radiation therapy she recieved after her lumpectomy almost 23 years ago??  It seems far more logical than the dormancy theory in someone who has gone so long without any evidence of systemic disease.  Radiation-induced breast cancer takes at least 10-15 years or more. Nobody really knows how many women are having radiation-induced recurrences because nobody seems to care enough to study the issue other than to acknowledge it''s potential existence. Oncologists simply say "it's a recurrence" but either don't give it another thought or don't feel compelled to look into it any further or initiate any kind of study if they do recognize the possibility. But this public blind eye to the real problem of radiation-induced cancers is almost criminal.The dormancy theory has possibilities and it really might be one plausible explaination of how some women have distant disease resurface seemingly out of nowhere after an extended period of time. It could be that some peoples immune system is capable of keeping things in check for a while or some other obscure mechanism of control. BUT - there is another explaination for a local recurrence so far out.I'm getting off the soapbox now, but I could go on for hours - days on this subject. Ki-67 5%. Wide margin lumpectomy and biopsy track removal. Refused radiation and hormonal therapy.
Diagnosis: 2/22/2004, IDC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-

Halah

After my surgery, my surgeon said I got clean margins and that I am cancer free. I wasn't sure what that really meant. I think I'll probably be looking over my shoulder until I get used to this idea of being "cancer free" or dancing with NED, if that is indeed the case (only 3 weeks out from surgery so who knows).

This has certainly made an interesting discussion, one that will continue to play out in my own mind. I hope that we can all be free from this disease, even if it only means in mind only. I know since my dx it's overwhelmed me.

Wishing the best for each and every one of you.

Mindy

Lowrider54

This is a debate that will never end.  The medical community is divided, the information put out is split on the subject and the scientific community has yet to step forward and declare without reservation that breast cancer is 'curable' in some instances.  What does one believe?   

Aside from my reading/research which I have loosely based my summing up, my personal opinion is quite different. 

I do believe that what we eat, what we encounter in our enviornments, the treatments we undergo, the testing we are made to believe we need and all the other 'external' factors play a role in which individual a cancer will grow or not, whether it can be completely removed or treated in one and not another, and the genetic makeup that makes us individuals that contributes to it.  And I believe there are 'triggers'.  For instance - a severe blow to the breast or in my case, repeated blows to the same breast starting from a ice ball as a teen, a serious car accident as a young adult and the final blow from an abusive husband at 43 and within 6 months, I had a lump that my onc said 'could have been so small, it went undetected for years and was suddenly 'turned on' and grew to the size of a small plum rapidly'.  And then we played 'wait and see' for 10 months before treating - sure, my horse was out of the barn despite the surgery and treatment but I was 10 years NED.  Now, even though it is what my onc believed to be true - the severe blow was a likely the trigger, he would not go on record and say so.  But I know and that is what I believe.

I think if more of those onc's would go on record and state emphatically that some bc's can and are 'cured' (removed entirely would be more appropriate) and that some are not such a mystery in what caused it to occur, perhaps the research would be much further on to truly developing a real cure for the disease itself - not just to be able to remove it but the ability to stop it dead in its tracks, no matter the what the stage.  That is the 'cure' I pray for everyday. 

Blessings to everyone that ever has to deal with the crap and continued success to those who have been fortunate to have it removed and live a long, long life without ever encountering it again!

Lowrider54

Interesting timing for this topic...there is a special coming on concerning what to believe...I just got a glimpse of it this morning on the news - will try to post when it is going to be on and what channel as it addresses the very issue here - what to believe when the information concerning breast cancer is so different depending on who is issuing the information.  Should be a good watch!

Halah

I'll look out for your post, lowrider!

Isabella4

I-

BarbaraA

I'm with you Isabella. It is never over.

Halah

"It is never over". It's a frightening thought, but I agree. Although I got a BMX to avoid a recurrence, I still have the fear.

Anonymous

There is no cure for breast cancer.  There are surgeries and treatment that extends years to women.  I personally believe that from what I've learned from my onc, researching, and sharing education and experiences from the wonderful women and men on this website.

Barb