Yes, you read that right: managing breast cancer as a chronic disease.
If you have ever been diagnosed or know of one who has, you died a little inside, right? Or flipped off your screen, which was exactly my initial response.
You can take the gal outta West Texas…
Let’s look a bit deeper.
I recently heard a medical professional use the “chronic disease” term as a blanket thrown on all women who have had a diagnosis of breast cancer. I balked and asked for clarity.
Their reasoning (and maybe this is a shift in the medical community, I have no idea) was in part because of the constant monitoring post-treatment and the possibility of recurrence, even 10 years after an initial diagnosis.
Prescriptions for hormone blocker (some for 5 years, but new guidelines are now suggesting 10 years) for some women are also considered treatment, which walks hand-in-hand with a chronic condition.
The AMA state on their site:
Even after you have completed breast cancer treatment, your doctors will want to watch you closely. It’s very important to go to all of your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do exams and lab tests or imaging tests to look for signs of cancer or treatment side effects.
Almost any cancer treatment can have side effects. Some might only last for a few days or weeks, but others might last a long time. Some side effects might not even show up until years after you have finished treatment.
Yes, we watch. Yes, it’s important to follow-up. Yes, we do all of the above. No where does it tell us that breast cancer in itself is a chronic disease. Metastasized breast cancer, excluded, of course.
Acute condition is defined as: an illness that is of short duration, rapidly progressive, and in need of urgent care.
Chronic condition is defined as: In medicine, lasting a long time. A chronic condition is one that lasts 3 months or more.
Did my breast cancer last longer than three months? Yes. Do I still have it? No.
It was a chronic illness while being treated, yet the time of treatment has passed and I no longer need treatment.
Some may think this is nit-picking (eww), but let me say this to those who haven’t been touched by a diagnosis: When you’re told you have breast cancer (or someone you love does), it’s like walking straight into the gates of hell.
You have no idea if you’re going to be lucky enough to climb out of the fiery pit. So, if you do, if you’re lucky enough to survive what your medical team throws at you, afterwards you DO NOT want to be treated as if they’re waiting for it to come back.
Cause breast cancer is chronic, yo.
I call BS on this ridiculous medical over-reaching and I’m telling y’all now, I don’t know how much more of this redefining of a disease I can take.
Until anyone is diagnosed with anything, there is no need for treatment. We don’t say we have chronic anythings when we go for a yearly check-up to make sure we’re taking good care of our health, do we?
Some may see this as a fear thing. It’s not. I had breast cancer. I had chemo. I was sick in a way I’ve never been or hope to ever be again. Words are the least of things on this earth that scare me.
When I go in for blood work, or to see my oncologist, it is for a check-up. I do not and will not be plugged into a “chronic disease” model for their sake.
Please, do not misunderstand me: I am not disparaging anyone who has a chronic disease and would accept a diagnosis if I actually had one, my point is that I refuse to follow a standard of care if there is no known disease to treat, just because I once had said disease.
My head = explosion.
UpToDate: one of the most respected medical information resources in the world, used by more than 600,000 doctors and thousands of patients to find answers to medical questions, says that breast cancer is one of the most common female cancer in the United States, the second most common cause of cancer death in women (after lung cancer), and the leading cause of death in women ages 45 to 55. When found and treated early, breast cancer is often curable.
Emphasis, mine. Not chronic. Often curable.
The PR for breast cancer is remarkable. Lots of people are stunned women still die from breast cancer because the numbers surviving are steadily rising.
When some folks found out I was diagnosed with breast cancer, they were relieved, because “women don’t die from breast cancer like they used to, right?”
Right. Yet, many still do.
Those who don’t die from it are lucky ducks; I’m a lucky duck.
I understand that having a diagnosis puts one at risk for a recurrence, but I refuse to live in fear and I absolutely refuse to be treated as if I have something that needs to be treated when, it has ALREADY been eradicated.
I was diagnosed with melanoma in my 30s. Back then, there was no treatment other than cutting the tumor out and hoping the surgeon got it all. My dermatologist advised that it would “only take one errant cell” for me to have a recurrence.
I went on to live my life, yet with regular check-ups. I was not treated as if I had a chronic disease.
The Breast Cancer Action site states what I feel clearly: “…the push to view breast cancer as a chronic disease seems to be an effort by the cancer establishment to convince the public that we can manage it successfully, and therefore we need not be concerned by the fact that there are still millions of women diagnosed with breast cancer every year.”
Gives me chills. If the medical community views breast cancer as a chronic disease that can be managed, is the effort towards a cure really all that important?
Yep, I’ve been diagnosed. Yep, I’m still taking hormone blockers. Nope, I do not have a chronic disease.
Note to any in the Medical Community Insisting It’s So: Just because you say the words, doesn’t make them true.
Don’t push me on this.
~You are welcome to chronically share this post!~
Thursday 30th of March 2017
I am now two years out and BC free! Yeah Boobies! I am not chronic, nor plan to be! You asked the one question that I also ponder a lot: "If the medical community views breast cancer as a chronic disease that can be managed, is the effort towards a cure really all that important?" As a second part of that question, I ask, "do you realize how many people would be out of jobs if the cure for breast cancer was discovered?" Sometimes I think they are doing just enough to keep us hanging and to keep their jobs. This comes from a BC survivor who works for a very large pharmaceutical company with a drug on the market for metastatic breast cancer. I honestly think they do just enough to make us think they are looking for a cure, but not enough to cure it for the reason I mentioned above.
Thursday 30th of March 2017
You and I are coming from the same place: as ones who have walked this path. I'm sure your unwanted education into all things breast cancer has been as horrifying as mine. I honestly don't know that we'll ever see an end to this disease. I understand it's complicated and that it's a difficult fight, but I will not be put into the chronic disease column.
So happy for your two year mark (me too!).
Aletha Oglesby, M.D.
Wednesday 22nd of March 2017
Your points are well spoken. I have been a family medicine physician for 38 years and cancer treatment of all kinds has changed much in that time. I think the idea of cancer being a "chronic disease" is in contrast to it being a "terminal disease" like it often was 40 years ago. Fortunately, that has changed. Certainly someone who has been treated for and recovered from cancer usually needs to have periodic monitoring, but I would not call that "chronic". Someone still undergoing active treatment of any kind, even if the cancer is not detectable, could legitimately be called chronic. Sometimes the language we use in medicine reflects the way we understand and approach patient care. We physicians are individuals like everyone else, and we don't all think the same way. Perhaps thinking of breast cancer as a chronic disease helps that physician remain diligent in follow up monitoring. Thanks for sharing your insights.
Friday 24th of March 2017
Aletha - Thank you for your insight and perspective. I agree on all points and I understand the idea behind labeling cancer as a chronic disease, especially in the follow-up phase. And there's where I draw my line. (ha- makes me twitchy!)
I loved that you came her and offered your experience. Thank you.