Progression-Free Survival: Can We Find Another Term?
I know science is for scientists. And medicine is for medical professionals.
But to be of benefit in our health care system, science and medicine must reach the end consumer -- people. Regular, average, ordinary, everyday people. People with feelings who are sometimes struggling to cope with a very real threat to their ability to live a quality life, or to live at all.
For those people, the words of science and medicine matter. They help describe circumstances and set expectations.
Choosing words carefully can make a difference for people.
Frontline caregivers know this. That’s why bedside manner is important. You wouldn’t want medical professionals making a diagnosis of multiple myeloma to kick off the discussion with “Based on current data, most of you are dead within five years.” That would be bad.
So I want to know which scientist came up with the term “progression-free survival.”
I am sure the choice was made out of devotion to scientific precision or something like that, but talk about turning a positive into a negative!
I am extremely fortunate. I am in remission. Complete response. No myeloma detected. I got there with novel agents (another odd term that communicates nothing really about how they work and what they do, but we will save that discussion for another time.)
After balloon kyphoplasty, five rounds of chemotherapy and stem cell collection, none of which was fun, I feel great -- as good as I did pre-diagnosis.
Now I am told that maintenance therapy with Revlimid (lenalidomide) can extend my “progression-free survival.” Not my progression-free life, not my progression-free time, but my survival.
I don’t know about you, but survival is kind of a scary term. Precise perhaps, but not exactly optimistic. It’s kind of like being told that you are on the Titanic, but you haven’t hit an iceberg ... yet.
Another friend who has fought off cancer told me the main psychological goal for cancer patients is to try not to prepare to die, but to prepare to live. Focusing on “survival” is not the way to prepare to live. And while I don’t know how long my remission will last, I am focused on living today.
I suspect progression-free survival is a hold-over from an earlier period when multiple myeloma patients didn’t survive much. And it’s used widely for other cancers.
Now, however, we are in a new period when recent advances in drug development hold the promise of turning myeloma into a chronic disease to be managed for the long haul.
One of my doctors, Dr. Ken Anderson at the Dana-Farber Cancer Institute in Boston, spoke recently of a day when his myeloma patients will be cured. Given myeloma’s an incurable disease, he was pressed about what he meant. He replied, “When my patients grow old and die of some other cause.”
Carefully chosen, encouraging words. That’s what I’m talkin’ about.
When I was diagnosed, I asked every doctor I met to tell me the hallmarks of a successful cancer patient. To a person, each answered: “A positive attitude.”
So can we find another term, please? One that helps set a positive attitude. Can we remember that words matter?
When we invent new terminology in the future, can we remember the end user, and think about the importance of a positive attitude to promoting progression-free life?
This is a guest patient opinion article by David Mitchell. David was diagnosed with multiple myeloma on November 8, 2010 at the age of 60. He is currently living a progression-free life with his family in Potomac, Maryland.
If you are interested in contributing an article for publication in the opinion section of The Myeloma Beacon, guidelines can be requested by emailing .
Semantics -- how can it cover what the medical world needs and at the same time soothes and encourages patients....as you say, bedside manner.
I've never liked the word "survival" or "survivor" as applied to cancer patients -- it's like we are on boats with holes bobbing along with "median" statistics as to who makes it to shore. My young dr. thinks in terms of "control" and "quality of life." I've never heard otherwise.
Excellent point! I can't stand that term! I won't even type it.
It sounds to me as if once you start "progressing", the next step is death.
Thanks for bringing this up. I'm with you on the importance of language. We live with MM...maintaining a sense of wellbeing does not hinge on being disease free or having a positive attitude.
Excellent article David!!! Well said Stan, I find myself skipping past "those terms" when I'm reading let alone typing them. Lol
At the dialysis center, they use the term "better outcomes" .My doctor told me not to lose anymore weight (bless him Lol!) because people with a little extra have better outcomes. Now bad outcome is code for death, of course, but somehow better outcomes sounds more positive.
I admit to being an optimist. My glass is always half full, never empty.
Haven't seen one bit of my myeloma since it was put into remission 3 1/2 half years ago by velcade/ dex/ thalomid. My only maintenance is 6 grams of curcumin and I plan to have a kidney transplant in the future.
I don't feel great everyday since I am on dialysis but I make the most out of what ever part of the day I am given.
A turning point for me was when I realized that I was no longer worrying about myeloma much of the time. That made it easier to get back to my normal life, and I DID feel better than before since of course I had cancer even before my diagnosis, and i don't know for how long. I am sure it was for a few years anyhow. Having fractured vertebrae wasn't fun, but they are healed up now mostly, thanks to bisphosphonate treatments. So, being back to a normal blood system, and not having my immune system fighting mutant plasma cells tooth and nail all the time, led me to feel better, even though am a few years older now. Must have lost some time there, but am happy to live as well as possible now and just move forward along with the rest of my friends. And as for 'bucket list', I have changed it to 'wish list', because of course we all have goals, but mine have changed because of the recent experiences with this blood cancer. In our support group, we prefer the term 'warrior' to 'survivor'. I think that this is because one always has to be vigilant with myeloma....you can't literally say you have 'survived' it. It doesn't hurt to be careful with one's health anyways!
Nancy,
I LOVE THAT!
We are warriors. This is a much more pro-active term than a passive "survivor."
Thank you all for these interesting points! As a physician and myeloma patient, I can see both sides of the discusion. PFS is a scientific term used in therapeutic trials of certain cancers, where DFS (disease free survival) is not accurate, since the disease is most likely not cured. It is interesting to Google search this term: Progression Free Survival. Good entries explain this.
In the clinical setting, however, the term is best avoided for the reasons cited ( and agreed to by previous commentators). A skillful physician will always put trial and population survival statistics in context, since there are so many individual variables. No one knows their final departure date.
Personally I feel that the quality of life (and the amount of love given and received) is far more important than the quantity of life. Hope and a positive (yet realistic) attitude are important to nurture. Let us hope that we can soon speak of myeloma cures. In the meantime, this challenge can be an opportunity on many levels.
Totally agree with opinion that the standard scientific terminology interferrs with maintaining a positive attitude, a crucial ingredient of improving health.
My Doctor who is wonderful as a technician only contributed to my fear. It took a Livestrong nurse to put everything in perspective. Compare their responses.
Livestrong Nurse: I asked her, "should I sell my bikes?" She said, "Heck NO! You have an excellent prognosis based on your condition and metrics. And I don't BLOW SMOKE!"
My Chief Oncologist: My question, "What is my prognosis?" She said, "The survival data is old, but the regimen we will put you on has an excellent rate of Complete Remission."
Of course my Oncologist gave me the unemotional "facts." But in this emotional setting she fell short. It was like she was afraid of over-promising.
A positive attitude is crucial to following the regimen, diets, and habits to getting well. If I'm going to die from this at least give us me hope that I can fight it.
I was very grateful to have a Livestrong volunteer help give my attitude a boost. My Dr. is a wonderful scientist and technician, and maybe she needs to hire a cheerleader for a nurse. However, I don't need someone to "blow smoke" just someone to give me hope.
BTW I got to complete remission after two cycles of Vel,Dex,Cytox. We start the SCT process in two weeks. My Doctor's nurse wouldn't let me celebrate for more than 30 seconds without saying, "I don't want to burst your bubble, but the stem cell transplant is no picnic." Can you believe that?! Once again my Livestrong nurse came to the rescue, "YOU HAVE MADE MY DAY! What a great way for me to start out my day. I am so excited to hear this news. I was clearly confident that you would get a CR and will push on to SCT in great fashion!"
I rest my case!
I don't know, but for some reason the term that's always bothered me most is "salvage therapy." It just does not give me a very good mental image -- like some old, rusted, decrepit ship with welders' sparks all over the place that somebody's trying to make seaworthy again...before having to send it off the the big shipyard in the sky.
David,
I agree with you that language can make a difference when it comes to mental attitude. I suppose I consider the source when it comes to language. I don't anticipate the Docs being cheerleaders nor spiritual leaders. I pursue different avenues for that. Just as we do in most areas of our lives. Medicine hasn't ever been about nurturing our spirits but rather 'curing' the flesh.
In that sense, I agree with Jan and will add that physicians frankly are also liable for giving false or inaccurate information that can be misleading when it comes to diagnosis or prognosis. Jan mentioned that there is no disease free survival data for MM...but I think we should go a step further when looking at why the docs say progression free survival (PFS)...it is because nothing has be shown to increase survival. There is no data showing overall survival based on the current standards of therapy for MM not even with maintenance therapy.
What that means to me is that the drugs keep the disease from progressing rapidly and MM patients incurring all the end organ damage that can diminish the QOL we have, but they do not extend our lives even with the therapy.
Consequently, I seek spiritual support from other resources. One of my favorites is Joel Osteen. He has a new book entitled Make Every Day Friday. He talks about how it has been shown that folks are happier on Friday because they are looking forward to their weekend plans and how we can bring that level of happiness into our week on a daily basis and not just on Fridays.
You wrote that you do not want to focus on 'survival' but on life...and here is what Osteen wrote that may help you continue to achieve that and which you may already be practicing:
" Prepare for victory. Arrange your mind so that you choose happiness each and every day. Whatever challenges you face, whatever circumstances are weighing you down, you can choose your response. Tell yourself, I'm excited to be alive at THIS moment, I'm excited to be breathing today, I'm excited about my family, my health and my opportunities. I have plenty of reasons to be happy right now. Make up your mind to enjoy the day. It's not what happens to you or what you have or don't have that is important; it's how your mind is arranged and by the choice you make. So, prepare for victory at the very start of the day.
When you begin each day in faith, anticipating something good, God tells the angels to go to work and to arrange things in your favor. He gives you breaks, lines up the right people, and opens the right doors. That's what allows God to show up and do amazing things. You get some of those breakthroughs you've been praying for if you just get up in the morning and prepare for victory. Prepare for increase. Prepare for God's favor. Choose to rejoice. Choose to live the day happy. Choose Happiness"
God's angels have clearly opened doors for you Dave you likely will be here when MM therapy does succeed in achieving overall survival and never have to hear the term PFS again!!
suzierose
I think Lou wins. Salvage Therapy has to go! I picture those grainy videos of submarine cameras filming the Titanic thousands of feet below the surface of the ocean--broken china on the floor, barnacles etc.
The only people that need salvage therapy are the divers-ha.
Nice post Suzie.
Stan
Thank you all for taking time to read the post. Thanks for all your thoughtful comments. I, too, want precision in the information I get from medical professionals. In this instance, however, progression free time would be as accurate as progression free survival. It is possible to select terms that are medically precise and which are kinder to the patient. For example, "salvage" therapy--I have heard it as "rescue" therapy. The doctor said, "If you have an autologous transplant, we will destroy your immune system, and then rescue it with your own stem cells." There must be a better and still accurate term; how about "deep cleaning and replacement?" OK, I am being facetious, but only partly. New therapies are extending life after diagnosis. A few short years ago, one might have expected 2-4 years. Now that expectation is probably closer to a mean of 5-7 years, and growing. Twenty years ago, a diagnosis of HIV-AIDS was a death sentence. Today it is a chronic disease to be managed. We could get there with myeloma. In my mind, I am not a mutliple myeloma survivor or a mutiple myeloma patient--I am a person with multiple myeloma. As treatments improve, I hope to be able to say that for a long time. Meantime, I wouldn't mind changing the popular lexicon of the disease to match the evolution of the science. I hope everyone has a great day today.
I have issues with the term "transplant" unless it's an allogenic transplant. When they take your cells out and put them back in it should be referred as a rescue.
I think people get confused when they hear "the transplant worked" or it didn't work. The better question would be "did the chemo/melphalan work"?
If you opt to store your own blood before an operation, they don't call it a transplant when they give you back your own blood.
Ah..what do I know??
Hi David,
I see you addressed the term transplant in the post right above mine--you beat me to it. I like "deep cleaning"--that's a good one.
I'm going in for a marrow cleaning, back in 20 days!
Stan,
I agree with you 'transplant' is deceptive when it is auto. It is as you noted 'marrow cleaning'..we get roter rooted!!
lol
I think that the term 'transplant' originated from 'bone marrow transplant'. Before stem cells were used in treatment, actual slivers of bone marrow from a donor were sometimes transplanted into patients with blood cancers. ( Source -- There is a long article in 'Wikipedia' on bone marrow and stem cell transplants. ) You could say that stem cells are being 'transplanted', since there is a long procedure involved in harvesting them, storing them, and then returning them to the patient, or donor. There are also issues of potential rejection, as in organ transplants. One interesting thing I found when getting re-vaccinated after having lost all of my immunities due to the SCT, was that people who are receiving organs thru transplant also have to get all their shots again! I guess that those people have similar issues with immunity too. So perhaps 'transplant' is a term that evolved through differing treatments for the same diseases??
David,
Great article. The terms doctors use and the way they deliver it are so important.
I agree with everyone that the term "transplant" when used in the context of an auto is "overkill", though medically correct. While it is certainly difficult on the patient, it is a simple procedure for hospital personnel. I once used the term "rescue" to describe an auto in a forum and had a lot of people respond thinking that meant I was saying that I thought an auto should only be used as a last resort, to "rescue" a patient was dying.
At least when you are getting the melphalan at the auto, the oncology nurse does not refer to it as Liquefied Mustard Gas!
Mark
Mark
Here in Australia the term Autograft is often used instead of Autologous Stem Cell Transplant. I noticed in the transplant unit's office that this term was used on the filing cabinet with our records in it. Seems a good term as its makes it clear that the cells are your own and then when the stem cells start to produce new cells in the marrow the term used is engraftment so it all makes sense.
I agree that semantics is really important. When I was diagnosed I was told "its incurable but we can keep you going for a while" made me feel like a worn out piece of machinery and implied a pretty poor QOL. Fortunately that has not turned out to be the case, well not all the time.
Hi Mark!
lmao@ liquified mustard gas..talk about WMD's hahaha
..no patient would agree to therapy despite it being 100% accurate.
ICAM with you about the term 'rescue' as well...and what that person said about it being a last resort to save patient from dying..is absoLUTely true...your harvested stem cells ARE the last resort to save you.
Many times folks do not get that when it comes to auto. They place the emphasis on transplant which is not the therapy. The therapy is the high dose chemo. It's scorched earth for the bone marrow with liquified mustard gas..then they RESCUE you with your own stem cells. The stem cells were harvested TO rescue you!! You no longer have enough normal cells to bring yourself back. You need your harvest.
It is not a transplant in the sense of you getting NEW organ...you get back your SAME stem cells.
The people who are rescued with DONOR cells get a transplant.
Happy November! I enjoyed reading all the comments, esp. Susie Rose reply to mine. Since I'm used to reading medical jargon, I don't seem to have the visceral dislike to some of the terms discussed. I agree that physicians are not the best source of inspiration and support usually. There are other great resources for that.
The goal of holistic medicine is to combine the best of allopathic medicine (best for diagnosis and acute therapy) with complementary options (nutrition, carefully chosen supplements and hormones, acupuncture, mind/body therapies, etc.). Optimum health is physical, mental, emotional, and spiritual (whatever that means to an individual). We all need to take charge of our health, with the support of our friends and loved ones.
Yesterday's Mayo Clinic article has convinced me to delay ASCT (after harvesting stem cells) and concentrate on preventing a relapse as long as I can. We are not far from being able to talk about cures for MM, I am convinced! In the meantime, enjoy life. Don't sell you bicycles!