How do you feel about the term "cancer free"?

In My Humble Opinion
1

I have a bone to pick with this term. How can anyone know for sure that they’re cancer free?

Background: I am a member of the club no one wants to belong to, diagnosed with breast cancer almost three years ago. Lumpectomy, radiation, estrogen-blocking drug for another two years or the rest of my life (I guess the oncologist will decide that later). I got off fairly easy compared to many other women. I had mammograms every six months for the first couple of years and will go on having them annually.

No one has called me cancer free, and if they did, I’d say, “How can you be sure?” If you have an all-clear mammogram, to me that just means the radiologist has not spotted anything in your breast today that looks like cancer. It doesn’t mean your whole body is cancer free, and WRT your breast, it just means “cancer free for now.” I find FOR MYSELF that that term is as substantial to hang on to as a soap bubble. FOR MYSELF.

People cope and find strength/comfort in their own ways with their own words, and I’m not here to criticize or throw rocks at *anyone *who uses “cancer free” to refer to themselves or loved ones. But I’d be interested in knowing how and why you derive comfort from using it? Maybe I’m missing something, and if so, I want to learn.

2

I take the term to simply mean no detectable cancer. It doesn’t mean you don’t have a single cancer cell, or that you won’t have a reoccurrence down the road. I’ve heard it said that if you live long enough it’s likely that you will eventually have to deal with cancer of one form or another. It just means that for the moment they can’t find any cancer in your body to deal with. If I had been fighting cancer and a doctor said I was cancer free I would take that to mean that I can take a breath and not stress about what might have been… for at least the moment. I don’t have a problem with that term.

3

It is not meant to be a literal term. Someone who’s had cancer may have individual cells that are undetectable. IMO it is a label for a general category of recovery and level of cure.

4

I’m not an expert, but the deaths of my father and husband has introduced me to cancer and how our society looks at it in a new way.

I suspect “cancer-free” is like the term “former addict” - it’s used by people outside the affected group, either through ignorance or some sort of magical hope. The reality is that once someone has been an addict they will have to deal with addiction for the rest of their lives - “former addict” means “not currently experiencing an active addiction today”. As noted “cancer free” simply means “we can’t find any today”, someone who has had cancer will have to be on guard and watch for it the rest of their lives. Even if the original cancer never comes back statistically they’re more likely to experience a different type of cancer down the line.

While we’re on the subject - I definitely have strong opinions about the whole “battle” and “war” metaphors used for cancer. I get a definite notion that for some people choosing comfort care over aggressive treatment is seen as giving up no matter how advanced the disease or how frail the patient at time of diagnosis, that choosing hospice is the same as outright killing people, that if conventional treatment fails you
have to push for clinical trials or experimental treatments, and Hallmark Special tales of “brave, strong, courageous” folks who “won the war” are held up as ideals - but those who don’t survive are no less brave, strong, or courageous even if that seems to be implied. I don’t see any good in subjecting someone past the point of no return, who is dying, to more and more aggressive treatments with punishing side effects that will not benefit them, just make their last days even more miserable than they would otherwise be.

Which, circling around…

People want to hear “cancer free” because, I believe, to some people that means the war was won. Yay, Victory! It’s clean and it’s neat and it means they don’t have to worry any more. Often the same people who believe modern medicine has a fix for everything (newsflash: it doesn’t).

But… that’s not reality.

5

Well, some people do seem to be effectively cured. I know a kid who had leukemia; diagnosed at age 9, underwent treatment for two years, and declared free of detectable cancer. He had to go a year without a recurrence before he could start human growth therapy. The radiation therapy he needed to combat the cancer destroyed his ability to make HGH, so he stopped growing taller. HGH can promote cancer cell growth (because it promotes all cell growth), though, so he couldn’t take it to grow taller until he was free of detectable cancer cells.

At almost 12, he finally started HGH. He looked like he was still 9 years old, but he started to catch up really quickly, and by his bat mitzvah, he was almost at tall as a normal 13-year-old.

He is in his 30s now, and has never had a recurrence. He is 5’10, and slightly taller than his father. At first, he had blood tests every six months, and a CT scan every year. He no longer has CT scans, and has blood tests every two years, but was told to marry, have children (because he has his treatments before puberty, he wasn’t rendered sterile, apparently), and plan his life for a normal life expectancy.

Now, I have most of this information through his father, not directly from him, but I have no reason to think it isn’t accurate.

If he wants to call himself “cancer-free,” I think it’s pretty good shorthand for his status.

I also have a cousin who was diagnosed with colon polyps that were malignant, but had not spread. This was about 25 years ago. The section of her colon was removed as a precaution, but she did not undergo any chemo or radiation. She did have regular blood tests for about ten years, and they never showed anything. She considers herself “cancer-free” as well.

I’m not going to argue with anyone about what they can call themselves.

ETA: I almost forgot about this: my paternal grandmother had breast cancer in the 70s, when mastectomy was the only treatment. She lived for a good 24 years after, and died at 86 of a stroke. She never had a recurrence. So never having a recurrence is certainly possible.

6

The alternative “in remission” recognizes uncertainty, but is it a valid substitute for “cancer free”?

7

IMO/IME Broomstick nailed it. If a member of the club takes the words “cancer free” at their plain dictionary meaning, they’re doing it wrong.

There does come a point after enough successful treatment that one’s risk of recurrence is said to be back down to the population background level. If somebody gets to that spot I suppose they could say “I’m as cancer-free as the rest of humanity. Which is to say, sorta but not completely.” Only including the first of those two sentences is wishful thinking for everyone, but especially for club members.

The real failure of “cancer free (now)” is that it implies " … and I’m not gong to get it later either". That second half’s not strictly true for anyone regardless of their history. No matter how many incantations we utter.

As to kayaker, IMO/IME “in remission” means “not currently growing”. Which is different from “not currently detectable”.

8

Similar to “recovering alcoholic”.

9

Of course no one who has had cancer (like me) can know if they’re truly cancer free. But then neither can any one who’s never had cancer. Would you (generic you) want to be described as not-diagnosed-with-cancner-yet? That’s more accurate isn’t it?

Note by “accurate” I mean in the literal interpretation of the words in the phrase. Languages evolve and phrases take on meanings other than their exact literal interpretation. When you see “money-back-guarantee” you still have to read the fine print.

10

I don’t like it. I also dislike, “Cancer Survivor”.

11

My mother is cancer-free, to the best of my knowledge and hers. She had ovarian cancer, it was treated via hysterectomy, chemo, and a “second-look surgery”. It’s been more than ten years, she’s had CA 125 tests regularly, and no reason to think that any form of cancer she develops now is related.

She objects- or at least did-- to having it called a “mild” case of cancer, but really, it was caught early, and the treatment caused her more issues than the cancer had.

Being told she was cancer-free was not especially comforting for the first year or two, especially since she’d felt like she was in such good health at the time of the surgery. (Cancer was diagnosed post-hysterectomy, due to biopsy of the removed tissue. Hysterectomy was recommended based on suspicious mass(es), which were endometriosis and fibroids, I believe. It’s been a while). At this point, she generally only gets nervous about a recurrence when she’s got an appointment coming up or when other health problems crop up.

My aunt, on the other hand, has lung cancer, and has been told she will never be cancer-free, and the best she can hope for is managing it. (Her cancer is situated in such a place that they can’t do surgery on it without killing her). She’s had several good years, but, things aren’t looking so rosy right now.

I think there’s nothing particularly wrong or weird with feeling like cancer-free is not a useful description, even if you’ve got one of the forms of cancer that can be cured. And unfortunately, I think there are a lot of forms of cancer that can’t be cured.

12

I wouldn’t routinely address the subject in casual conversation. There isn’t an accurate way to address it.

Ditto to cancer survivor, too. A week after my lumpectomy, someone at work greeted me with big smiles and congratulations as a “cancer survivor.” It was a nun. A nun I’ve never liked. Some period of time (I don’t know *what *period of time) would have to pass before I’d ever apply that term to myself. Maybe never.

Maybe it has something to do with the fact that I’ve lost dear loved ones to cancer. They were not survivors. Why me and not them? Did they do something wrong? Did they not fight hard enough? If I am a survivor, it’s not any particular accomplishment that I can lay claim to. It makes me uncomfortable to claim it.

These are great, thought-provoking comments, y’all. Thank you. Great post, Eureka, and an excellent distinction pointed out.

Each person has to find his/her own relationship with the many variations of this disease, whether in oneself, a loved one, an internet pal, or even a total stranger.

13

In many ways, saying one is “cancer free” is about like saying one is “death free”. It might be a 100% true fact today, but it’s a crappy prediction about the long-term future.

Ultimately, each of us dances with Death every day. Sometimes wittingly, sometimes not. It’s usually far enough hidden from view that we can pretend it’ll never loom large. That’s (obviously) naïve. But it’s also real commonplace, especially in modern societies where a lot of death has been eliminated (postponed really) and been moved behind professionally-closed doors.

Cancer is a microcosm of the human life cycle itself. It’s unpreventable, semi-manageable, and strictly speaking, ultimately non-curable. Which leads me to the idea of embracing it as an eye-opener to the larger reality: death awaits us all. Not to be depressive about it, but all else equal the unknown or un-thought-about is scarier than the familiar or well-considered.
In a related vein I read something interesting this morning. One of the people who was a survivor of the recent Las Vegas mass shooting was killed recently by a hit and run driver. It’s always something.

14

Very good post, LSLGuy.

Before cancer or some other life-threatening condition enters your life, you have the luxury of keeping death “out there” someplace. This is especially true if you are or were ever lucky enough to be young and healthy. (Not every young person is that lucky.) Which is why you have to force healthy young people to buy health insurance. They feel immortal and invincible.

My late husband had multiple health problems, and during our ten-year marriage we took one good vacation and had one 12-month period with no hospitalization or surgery. How we envied ordinary people who could avoid facing their mortality. It was always there for us until the inevitable day when it came calling and would not be turned away.

I think the term “cancer free” applied to oneself or a loved one is an attempt to turn back the clock to those ordinary days before the diagnosis when you worried about work or the plumbing or bills or yard work–those lovely quotidian problems now displaced by the big, ugly, roaring elephant in the middle of the room.

Once you’ve had a diagnosis of cancer or M.S. or a heart attack, you can’t go back. There’s a new reality and part of it is seeing your mortality on the horizon, whether it’s a pinprick in the distance or the sheer face of a cliff in *your *face. You can live in the new reality and be happy and even look forward to the future. Because as **LSLGuy **points out, death is there, somewhere in the future, whether a disease has forced us to face it so far or not.

I’ve learned from this discussion.

15

I’ll recommend two books to anyone moving along this continuum. They’re better read during the better times than in crisis, but they’re valuable in any case. He has written several other books that I’ve not read.

They’re both by a guy named Stephen Levine who, to me, is the “replacement” for the late Elisabeth Kübler-Ross as a guide over the edge. IMO ultimately his approach is very humane and is compatible with whatever your personal approach to spirituality may be, including (like me) none at all.

The first book is Meetings at the Edge: Dialogues with the Grieving and the Dying, the Healing and the Healed. It forms a gentle-as-possible intro into how various people have dealt with this part of life. I think of it as a map of the landscape one will someday find oneself in. The stories of how others have navigated their way into, out of, and through this landscape offer us lessons of both what to do and not to do.

The second book is *much *harder. A Year to Live: How to Live This Year as If It Were Your Last. It amounts to a dress rehearsal for your own demise. He describes doing it for himself and invites the reader to do it too, not merely read about it.

Ultimately his point is the same as what I go through at work every few months during refresher training. If we are well-practiced at something we’ve thought carefully about, we’re likely to do a good job when faced with it for real. Failing to carefully plan and practice guarantees an unskillful performance. The end of your, or a loved one’s, life is a big deal. Do it thoughtfully and, ideally, skillfully. The pain of gross error and the terror of the unknown are both largely preventable with prior preparation.

I have not yet started, much less completed, the exercise. But I have read it through twice, and much else by other authors as I seek a philosophy appropriate to one’s mature years.

I am struck by how often these authors plead with their audience to not let this inevitable event catch them unprepared. No matter their perspective or their creed, the message of preparedness seems universal. Yet is evidently absent from so many peoples’ thinking.

Good luck to us all.

16

I like NED (no evidence of disease). Many snappy replies occur to me when people ask, “Did they get it all?” or “Are you cured?” but I confine myself to “As far as I know.”

17

I think “cancer-free” is intended as, and OK as, a loose term.

If someone just paid off a massive $90,000 college-loan + credit-card + car-loan debt, he can fairly exult and proclaim himself as “debt-free” even if he technically still owes Jake $17 for lunch yesterday.

18

I’m a part of the club. While I didn’t mention it much on the boards, I was diagnosed in May with a form of throat cancer caused by HPV. Yay for me.

Two months worth of radiation and chemo can kick your ass.

On the other hand, I had a PETscan a few weeks ago and I was told I was cancer-free. The PETscan - which I admit to not understanding a thing about - apparently goes down to the cellular level. The report my oncologist read me said, “No evidence of any hypermetabolic cellular activity”.

He cautioned me to consider my in remission and not cured and that I’d need a PETscan every six months for a few years to make sure I stayed cancer-free. At five years of being cancer-free - as proven by PETscan - I could say I was cured. But I’ve only started the process.

19

I never heard NED, but I like it. Strikes me as accurate.

Jonathan Chance, welcome to the club. :frowning: Glad the recent news is good. :slight_smile:

20

I was also going to post about NED. With my form of cancer, those are the three little words we pray to hear after our yearly CAT scans (I was NED as of early June).

Thanks for those book recommendations, LSL Guy. Do you mind if I ask what your occupation is? I’ve been told by my professors I’d be a good hospice social worker. I’m not sure I have it in me.