December 9, 2000
Is Metastatic Breast Cancer A Chronic Disease?
The Masked Author
Well, I don't know really what to think about the thesis that advanced bc can be classified a chronic condition. I agree about the concept of living with advanced cancer, and I think this group is an example of this. However, when Doctors compare advanced bc with diabetes, heart disease or renal failure, I respectfully disagree. Maybe I'm thinking simplistically, but diabetes, heart disease or renal failure will cause death rather quickly if left untreated. But when treated, I believe any or all of these conditions can be expected to extend one's life considerably. On the other hand, advanced breast cancer can and does cause death rather quickly, treated vigorously or untreated. At least, until advent of the Cure, that has been the case so far.
And again, this may be simplistic thinking on my part, but the treatments for diabetes, heart disease and renal failure seem to be concrete protocols that have had proven results in life-extension, and that show medicine as the science it set out to be. But with advanced breast cancer, as I think we're all aware, the treatment for each of us differs, there is no set protocol, and contrary to the above, the treatment options we as patients have to live with mandate that we get involved in decision-making because there is no protocol that has had proven results at this stage of the condition. Medicine then becomes an art, a beautiful, life-extending art in some cases, (but not by any means all) and medical treatment of bc mets is not at all a hard science.
I'm kind of angry today. It just occurred to me that even if I were to live a full life span (I'm 53) I'd still be tied to this damn oxygen canister for the rest of it. As a prelude to death, or in abeyance of it, life on a 50 foot line is definitely great! But I don't know if I'd be happy doing this for another twenty years. Anyway, thanks for taking me out of myself for a while.
Why don't you just tell us what you think???? GGG!! I hear your anger and I agree with you. This is simply a variation of the Well, you could get hit by a bus tomorrow we HAVE been hit by the bus and we are doing damage control.
I do have a chronic disease-hypoparathyroidism (I do not absorb calcium correctly)-which I have had since I was 23 (I am also 53). Believe me, my concerns about my chronic disease and my metastatic breast cancer are worlds, no universes, apart. My chronic disease has been an inconvenience---my BC is going to, eventually, kill me. No, I agree with you. I think there are times when the disease becomes like a chronic disease--like a long term response to a hormonal treatment. Is he considering that most of the treatments for chronic breast cancer can actually KILL the host (me)????? I don't think long term use of insulin will kill you (maybe I am wrong).
I believe I read somewhere (remember I was an auditor in the health care industry so I was exposed to a lot of medical info and data) that the highest risk population for suicide were people on dialysis. Why? Because they feel bad most of the time and are tied to a machine for life, like Ruth and her Oxygen tank. The only time most dialysis people feel well are the few days after they have rested up from their treatment. Then they slide back down, have dialysis and start again. Sounds a lot like a chemo cycle doesn't it?
Anyway, I am with you on this issue. How dare that doctor belittle how hard it is to live like this??? We are asked to make life and death choices for ourselves on an on-going basis. I have been thinking lately how really incredible most of you are. Your spirits keep coming back at the disease, the setbacks, the picking it up and starting again. I guess I mean myself as well but I think we are pretty incredible to have to live the way we do, making the choices we have to make, and maintaining a sense of spiritual, mental, and physical connected-ness to our lives and the world.
Here is a BIG PAT on the back for all of us..
Love and hope,
Melanie and Angela, you have said it so well. Yes, it is in GREAT TRIBUTE to us that we focus on whatever quality of life we can achieve with this disease. But, this man (MAN!!) doesn't have a clue. I am 46 with two children and I am DYING INCH BY INCH. That I do it with any dignity does not make it any less insulting that I am dismissed as being focused on the less sunny side of this disease.
Stop focusing on the fatalities? What world does he live in? Forty four thousand women a year!!! Time to get real.
Chronic disease? I think not! Accepting it as such demeans the whole effort to understand it better.
I guess my angry warrior attitude believes that nothing should ever be labeled incurable since it seems to lessen the efforts to research it and advance treatment methods. That we don't understand it well enough yet doesn't mean it's incurable. It places cancer back in the death sentence mindset when it was whispered about and called the big C". Can you imagine people like Jonas Salk taking that attitude? Where would it have gotten him or any of us?
It all sounds and feels like the precursor to throwing in the towel on aggressive research to me. Isn't focusing on the fatalities and epidemic numbers of this disease what has fueled the latest and greatest strides in research in the first place? I don't think we can afford denial of the epidemic numbers that currently exist with breast cancer. Of course we all need to accentuate the positive aspects of living with cancer and all the possibilities to maintain sanity and some focus. Still, I don't think the surface has been too deeply scratched when it comes to breast cancer and metastatic disease. Not from what I've been reading.
I would ask this guy if there are any other chronic diseases that might effect 1 out of 3 women by the year 2010 if the numbers continue to grow at their current rate? Outside of AIDS I'm not sure there are any others. Am I over reacting?
Yes, it is a chronic condition until it becomes terminal. I was diagnosed with bone mets 6 years ago and was then Stage IV. Through all kinds of chemo including a Stem Cell Transplant I had disease progression. Some chemos stabilized me but only for short periods of time, never over 6 months. But I was lucky, even with bone mets I had an excellent Quality of Life and no pain whatsoever. I am thankful for this good time. However this "chronic disease" keeps progressing. Six months ago I was dx. with brain mets and more recently spread to the liver.
I think not.
We can only hope that we will all live to see the day that stage IV breast cancer becomes a chronic disease and not necessarily a terminal one. Can we hang on long enough for this?
Three and a half years ago I would of felt the same way you do about mets being labeled chronic. Now, having mets I don't. Chronic to me means something we can treat and live with. I will take that over dying any day. It means ongoing treatment to manage the disease and side effects, but I will take that over leaving my 3 children motherless. I become outraged when I hear media suggest that new treatments and drugs have cured most breast cancer, when so many of us are still dying. Our life span with mets is increasing all the time, there is no cure yet, but every year counts as far as I am concerned. Gives me another year to help my children become more independent, teach them the live skills and morals that will carry them into adulthood, and another year to build our memories together.
Chronic, not cure, still not perfect but better that it was.
To weigh in on this topic, I think the balance lies somewhere in the middle. In some cases advanced breast cancer can be thought of as having some of the same considerations as a chronic disease. Certainly the location of the mets and how they respond to treatment and medical management is important if one wishes to consider this a chronic disease. However, calling it chronic does a disservice to all who are diagnosed with mets and progress rapidly to death despite the best that medicine has to offer. It minimizes their experience and the fact that the outcome is a "Sword of Damocles" hanging over them at all times. Chronic implies that it will be a long-term struggle and those that don't have the luxury of long term survival may be thought of as not measuring up to some arbitrary standard. Since we have many different ways of coping with disease and defiance is one of them, I might react with an "I'll show you" attitude in my determination to outlive all the projections from doctors. If being called chronic imparts some degree of hope and peace to those that have advanced disease, I see no harm in doing this. However, it is my knee-jerk reaction to say that this is just another attempt to minimize the experience of the woman who is living with advanced disease. Chronic, to my way of thinking, would be a more appropriate adjective for early stage breast cancer. Someone on the Club-Mets-BC said it best and I apologize that I don't remember who said this - Having metastatic breast cancer is a tug-of-war with death.
Many of us with mets, myself included, have good months, or even years, then the disease flares up again and must be treated, just like any other chronic disease. I think this does decrease the fear of having mets, and tells us that we can live with the disease, just like anyone with diabetes, heart disease, etc. We know it will get us in the end, but that end is just a little farther away if we know that we can live with the disease and a diagnosis of breast cancer mets is not an automatic death sentence.
I think I reacted very strongly to this since my father died of Hodgkins in 1971 and were he alive today and diagnosed he would live. I vivedly remember being a teenager and people just shaking their heads when I would express hope in his survival and possible research breakthroughs. The attitudes of people seemed detrimental yet the reality of how very serious the illness was and how little was known about it lit fires under research pioneers and the families who lost loved ones. I marvel at the great strides that have been made since then.
I also lost my mother to pancreatic/liver cancer in 1993. She had breast cancer in 1980 with no other hints of cancer until 1993. My mom had the tumor removed then seed implants and stayed in the hospital for a week and that was all. She became an alcoholic after my father's death in 1971 and I believe this was a very big factor in her cancer.
My mom refused chemo based on what she had seen my dad go through. She was also a brilliant RN and had diagnosed my father's Hodgkins at least a month or more before any of the oncologists at Yale New Haven did. I remember her lamenting how wrong the doctors were because they thought my dad (a veterinarian) had caught Rocky Mountain Spotted Fever. She had to harrass them and called Sloan Kettering in NY before anyone at Yale would take her seriously.
So, as you can see, there are many underlying issues that make me react! I'm so blessed to have an oncologist who stays current with research and isn't the kind of guy to throw in the towel. He is definately reality based about the seriousness of this disease and the statistics, but his hope and attitude about cancer research is contagious and so helpful to me.
I am sure the most positive person that has breast cancer mets, no matter how up of a person they are, thinks that once in awhile. I am going to die from this Not to say, they think of it constantly,but to me it is only normal. It's just that some of us are in different circumstances where it is harder to accept. I feel the only way we are not going to feel that way[even though we accept it ] is if they find a cure. The key word is acceptance and that does not come easy. I try to count my blessing everyday but sometimes I just don't feel that way. One of the things I love about this listserv. is, we all can say how we feel and understand and respect someone elses feelings. I loved With Hope you can Cope
I guess I could CONSIDER thinking of advanced BC as chronic the day that a Doctor can tell me he has a treatment that will hold the disease....FOR SURE...no more of this, "we can try______" stuff.
I have hope and I can hope.
But I have been told very honestly by 4 oncologists (yeah, I believe in lots of opinions) that this disease will kill me. And that Quality of Life should be my goal at this point.
That does not take away my hope, as what's important to me is the life I do have left. And I intend to make it as good as possible. And maybe it will be much longer than they expect!! They don't have all the answers.
Not chronic, actually terminal, but living each day,
Well said Jeanne! I am one of the Stage IV ladies with no evidence of disease, today, and I am grateful for that. I had been given that death sentence-- by Thanksgiving 96, my diagnosis was only confirmed on 7 Oct 96. Less than a two month life expectancy. I don't take any day for granted, but I also don't have any days when I am free of the fear of cancer, or free of the pain of multiple side effects.
Thanks for writing so eloquently what I felt.
I like the paradigm of bc mets as a chronic disease. But the reality isn't there yet. Like Melanie, I have a chronic, fairly benign, disease (hypothyroidism). Properly treated, I am fine. Sure, I need bloodwork on a regular (but infrequent) basis, and I have to stay clued in to how I'm feeling, but a little pill a day makes me close enough to normal to not care about it much.
Cancer, and cancer mets, is a whole nother thing. I can't take a vacation from thinking about it, because I've just had a treatment or I'm just going to have a treatment (it's better now with every three weeks, rather than weekly, of course), or I'm scheduled for or just had some bloodwork or I'm scheduled for or just had some scans or I'm going to see or just saw my onc(s).
Now, from the diabetics I know, it's the same thing. They can't get away from it, either. But every time they do a fingerstick, every time they see their doctors, they're not finding out what NEW, TOXIC treatment they might have to think about. They're not worrying about being told that they could die SOON. If they're in otherwise good health, and exercise good blood sugar control, they aren't likely to die anytime soon. Sure, there are exceptions. But for us the exception is the one who lives to within 20 or 30 years of their normal lifespan (unless they were diagnosed near that age already).
And Angela's comments about the oxygen are a more nasty version of what I sometimes think too. I'm 43 and I've been in complete menopause for 2.5 years. I have NO sexual desire. My hair will never be the same. My bone marrow will never be the same. My feet, from neuropathy, will never be the same. If TOMORROW I was cured, I would have lost immeasurably by having been under treatment after treatment after treatment. Not to mention that my spirit will never be the same. And I'm relatively lucky no metal plates, no lung damage, etc.
We are strong, to continue each day. To wake up each morning with hope, if not for the long term, for the moment. But I have friends with diabetes, and I can tell you, they'd never swap places with me, but I'd swap with them in a minute (except for feeling unbearably guilty afterwards :-)!
Amen! I totally relate to what you said about the chronic nature of this disease. I am asymptomatic, but constantly worry about how long the drugs I am taking (herceptin/taxol) will continue to hold me steady. It's not like one path answers all problems. And you are right about how much we relinquish with each new treatment. I, also, am 43 and have been in complete menopause since 38. The treatments alone have taken alot out of me. I grieve for the woman lost.
Thanks for your eloquent posts. I always enjoy reading your updates and thoughts.
Martha, thanks for your kind words :-).
And thanks for reminding me that at least I'm not one of the very youngest ones! The ones I feel worst about, the ones this chronic thing must make crazy, have to be those who are in their twenties and early thirties. At least for us, within a decade or so of menopause, the concept was there (although 41 beats 38 since I'm in the numerical decade, too). Menopause at 27? Younger? No way!!!
Hi Karolen: How about menopausal at age 22 (my daughter), misdx at age 20, dx at age 21 Stem Cell at age 21, she has been menopausal since age 22.
I think part of our problem with this terminology is that we are talking about a continuum, it's not black and white (terminal vs. chronic). Medical research is moving us farther along on the line toward "chronic" every year, we're just not there yet. Perhaps some intermediate term is needed, like calling it a chronic yet progressive condition...?
I have been living with cancer for 14 years and living with diabetes for 11 years. My bone mets has been in remission for 6 years and I only take tamoxifen and aredia. My diabetes is in my face for the last 2 years and I am adjusting diet and meds, sitcking my finger, seeing the doctor, and every time we get it in range it goes high again. Right now diabetes is a constant pain and cancer is just there. When I lose my remission, cancer will once again take 1st place. For now diabetes is the possible killer. For today I will just enjoy my day off from work and get ready for Christmas. I have taken my meds and I will eat with care and see the doctor later this month. Can't dwell on cancer or diabetes, I have things to do. Just My two cents.
I have liver mets. Not bone mets. I have not been in remission for more than 10 months since my diagnosis in January 1998, and that was following an HDC/PSCR procedure. I am on chemo and on chemo and on chemo. And I am lucky and doing well, given that the median lifespan for women with liver mets is 9-11 months post-diagnosis.
Hey, I know the median is a statistic, not me or anyone on this list. But I doubt that many diabetics face that life-expectancy immediately post-diagnosis. So... if I'd been in remission, on hormonal treatments only, for 6 years, I'd probably have another attitude (better!) altogether.
Not one of us would say that living with any chronic illness is easy. I think that Karolen is right, a big difference is that in most the patient does not have to hear that their Median time of survival is X number of months.
I know women who are living quite normal lives, in remission at stage IV. The best I've had is stable and that has slipped to considerable progression recently. Hopefully the change to Arimidex will get me back to stable. (Christmas is an appropriate time to get to the stable, right?)
My body, scars, etc. do not allow me a day, even before mets, that I could forget BC. Hours yes, but a day, no. Dealing with any serious disease is very difficult.
I think our major worry about being in a hurry to call Stage IV BC Chronic, is the fear that that belief will hurt the effort to obtain a cure.
I heard this weekend that there is hope for a cure for diabetes within the next two years. I hope that is true, as this disease affects so many. I hope we are ALL celebrating the end to our diseases very soon.
When treating metastatic BC, the goal is to buy as much time for the patient as possible, while minimizing the side effects of therapy. No one ought to spend the rest of their life in misery caused by therapies which are harsh (obviously, there are individuals who are willing and even eager to try ANYTHING, no matter how harsh, but lets's set them aside for the moment).
So, next one looks at what therapies have worked for that particular patient in the past, what has not worked, and what remains in the medication armamentarium.
Again, with metastatic BC, you try something,, ride out its success and when it stops helping, move on to the next...always bearing in mind that quality of remaining life takes precedence.
Kathleen (the onc nurse)
Yes. I think they are aiming for long-term chronic--leading to a day when it can be beaten. Better chronic, than a when? Fifteen? Twenty? years ago when there was only terminal. No hope of anything beyond the six months to a year. Better to have the time to live with than............. Yes. I have had mets since 1994. (For sure. I could have had it much earlier.) I had my first bout in 1992. Nine years. I have all the markings of the chronically ill. Never well. Never healthy, but managing. Getting along. Coping. Dealing. Alive. Planning.