The Cancer Words

Published July 13, 2015 by Deb Ragosta

Ever since I was old enough to know what having cancer could mean, and well before my own 1990 diagnosis, there have been an assortment of what I call “the cancer words” that were and are used to describe cancer, a person’s status with it or an oncologist’s “real” opinion of a patient’s odds after telling his or her patient the most dreaded words of all – “you have cancer.”

My earliest recollection of a famous person openly talking about having cancer was the Hollywood legend, John Wayne, on the Tonight Show, talking about his lung cancer diagnosis.  Wayne’s image was that of a larger-than-life tough guy who had starred in many westerns – always as the hero and always surviving to live for and fight another day.  I wasn’t a fan of his movies, but what I remember about him was that he always referred to his disease as the “BIG C.”  John Wayne didn’t have cancer, he had the BIG C and surely, the big movie star would beat the hell out of that “C.”  In the end, regardless of what he called it, even John Wayne was no match for cancer and the disease took him in 1979.

Of course, our world is much different now than it was in the 1970s.  President Nixon’s 1971 “War on Cancer” was a hopeful moment in time that has long past.  In fact, some sponsors of the legislation predicted a cure by 1976. Today, the internet and social media have changed the way we get our information and how we use that information.  Oddly, however, the words we use when talking about cancer haven’t changed and still have different meanings under different circumstances to different people.  For me, the most glaring of these is the word “cure.”  As a woman with breast cancer, I’ve done my share of walking, talking and raising money “for the cure.”  Although I know differently now, prior to my stage 4 diagnosis, I actually thought there was a cure for breast cancer.  After all – what was done with all that money raised?  I wasn’t alone in my ignorance.  Following my diagnosis, and my realization there was no cure for my disease, I engaged in a Facebook argument with a friend of a friend who posted that there was definitely a cure for breast cancer because one of her friends was diagnosed, took a pill for a few years and now she is cured.  As angry as that made me, I had to admit (to myself, at least) that I had the same misunderstanding of the how the word “cure” is used when referring to different cancers.  The reality is that, according to information provided by the Metastatic Breast Cancer Network, 20% to 30% of patients diagnosed at an earlier breast cancer stage eventually move on to stage 4.  Does that mean the other 70 to 80% are cured, or do they simply die from something other than cancer before the cancer resurfaces?   There is no time limit on making the jump to stage 4.  Up to ten percent are diagnosed with metastatic breast cancer from the get-go and others can live 20 or more years after their stage 1 diagnosis before they become one of the lifers.  Still, the word “cure” is tossed around by oncologists and medical teams, unintentionally giving many what turns out to be false hope.

Are you in “remission?” is a question I get asked often.  I guess because I have my hair and look healthy, people who know I have metastatic breast cancer assume I must be in remission.  Many people don’t know that stage 4 is terminal and they think being in remission is a good thing because they equate it with being cured.  Remission is a word used frequently in the medical community, especially as the word “cure” slowly falls out of favor because it doesn’t accurately reflect most patients’ relationships with their cancers.  According to WebMD, there are two types of remission – partial and complete.

“Partial remission means the cancer is still there, but your tumor has gotten smaller. . .  Some doctors tell patients to think of their cancer as “chronic,” like heart disease. It’s something you will need to continue to check. If you’re in partial remission, it may mean you can take a break from treatment as long as the cancer doesn’t begin to grow again.  Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

For us in the metastatic breast cancer community, being told we are “NED” is like getting manna from heaven.  We know cancer is still in our bodies, but our scans and tumor markers are normal, therefore, we can “dance with NED.”  We may never hear what we really want to hear (“you are cured”) but as long as we are NED, we are as close to being cured as we will ever be.  The hardest part is explaining to others that just because there is no evidence of cancer, it doesn’t mean it’s not there.

There are many words used when talking about cancer.  Some have changed since Nixon’s War on Cancer, but regardless of the words we use, it’s not the words that are the message.  The way cancer is treated has come a long way and more people with cancer are living longer lives.  In spite of new medications and protocols – cancer is still a killer, and that should be the message.  What has changed, is that we aren’t afraid to say the words that are part of every cancer patient’s dictionary.  However, we can’t begin to come to terms with the reality of our own cancer until we can understand the true meaning of the cancer words.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

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9 comments on “The Cancer Words

  • When I hear dumb comments or see dumb Facebook posts about some new miracle cure for breast cancer or what have you, I simply tell people “I have the kind of breast cancer that you die from” and then ask them if they’d like to “see my tits…well they’re not really tits they’re just plastic shapes…sort of…” that always shuts them up.

    Liked by 1 person

  • Can you please post the reference for your statement that 30% of early stage breast cancers will eventually progress to stage 4? I am a physician with recent history of breast cancer and I have only seen this statistic propagated along blogs but not in medical literature. Thank you.

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    • Dear Dr. Scharf,
      Thank you for reading my blog and for your question. I must offer a mea culpa for my statement that “30% of early stage breast cancers will eventually progress to stage 4.” What I should have written, was that “20 to 30% of early stage breast cancers will eventually progress to stage 4.” My source of reference was the Metastatic Breast Cancer Network’s “13 Facts Everyone Should Know about Metastatic Breast Cancer.” Fact #7 states “20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.” I have edited the information in my blog, as appropriate. I also edited my comment about the number of people diagnosed at stage 4 at their initial diagnosis, pursuant to MBCN’s fact #5.

      I feel comfortable using MBCN information and have referenced the organization as the source of my statistics.

      Wishing you well in your own breast cancer journey,
      Deb

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  • I’m not convinced that number 20-30% is accurate either. None of my physicians agree with it and we would all like to see this based on some evidence other than “facts” from MBCN. Ann from butdoctorihatepink blog just did an excellent post on this issue on July 21 just a few days after I wrote my comment here and she summed up the complex problem quite well. Unless someone uncovers some scientific evidence to back this number up, it is wrong to continue to propagate a fallacy. I have seen this in many blogs, not just yours and then it gets spread as gospel to everyone. It seems to me that the number is put there to shock people so as to help push for a cure which is desperately needed. There should be a better way but this is not it.

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  • After I wrote the above comment I noticed that MBCN has just posted an explanation of their statistics. The reference for the 20-30 % of early stage breast cancer which progresses to stage 4 if from an article in The Oncologist from 2005. I read the article myself and the author uses the number 30% with no reference. She makes a statement without backing it up. I have no idea how MBCN turned that into 20-30%. As far as the % of breast cancer initially diagnosed as metastatic, the article from The Oncologist from 2005 and the stats from MBCN reference SEER data from 2005. I read that data myself and they use 6%. Not 6-10%. MBCN also references ACR breast cancer facts and figures for their 6-10% but I cannot find that in the 40 page current document. So having said all that and done the research myself, I do not see scientific evidence to support the statistics given by MBCN and propagated along many bloggers. Everyone needs to be responsible for the content and try to ensure accuracy.

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    • Dear Dr.Scharf,
      Thank you again for your comments. I agree there is a lot of misinformation out there and I’m sure you are letting other bloggers know that they may be accessing and publishing incorrect information.

      That being said, however, please understand that although I admit I posted, what you pointed out as wrong information, my blog is intended to be a reflection of my thoughts as a woman living with breast cancer for over 25 years, 6 of which have been stage IV. However, that does not excuse or give me the right to share incorrect info and I will be sure to go to scientific journals, should I post statistics again.

      For me, and all women and men with metastatic breast cancer, how many people diagnosed with stage IV bc after being diagnosed at an lesser stage really doesn’t matter because we are part of that statistic, regardless of what percentage is attached to it. We are lifers and that won’t change, even if the statistics do.

      Although I can’t speak for the other bloggers who may be posting incorrect information, I certainly will be more careful in my future posts.

      Sincerely,
      Deb

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