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Millions of you are living with cancer. By the year 2022, researchers estimate more than 18 million people in the United States alone will be living with cancer. As our population ages, that number may grow.
In 1996, the National Coalition for Cancer Survivorship pioneered the definition of cancer survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his or her death. They later expanded the definition to include family, friends and caregivers who are touched by a cancer diagnosis in any way.
I've met many of you who don't consider yourselves survivors. People in the midst of treatment and/or dealing with recurrence don't always identify with the term survivor. Others say they don't like the label survivor and instead prefer the term thriver — putting the focus on living as well as possible, without the focus on cancer as a chronic condition.
Recently, I found a new term — previvor — in an article. It refers to people who have survived the risk of cancer due to genetic mutation. We're living in a time when, armed with DNA test results, you can make informed decisions to prevent a diagnosis of cancer.
An example of a previvor might be a woman who has a BRCA mutation and actively manages that risk by increased screening or preventive measures such as bilateral mastectomy or removal of ovaries to prevent breast or ovarian cancer.
As additional genetic mutations are identified that indicate a cancer risk, more people likely will be identified as previvors. Prevention strategies continue to be discovered that will help you take an active role in preventing cancer from occurring.
How do you feel about the terms survivor and previvor? I'd love to hear your perspectives on this topic.
Sheryl M. Ness, R.N.
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Words are important to me, which is how I came to search for a definition for survivor. On one hand, I felt I could be considered a survivor hher I was declared NEDS. Then when new tumors developed, I came to broaden my definition to the more medical definition of being 5 years NED.
"Previvor" doesn't resonate with me, as it suggests an outcome that may or may not happen, and doesn't offer a clear understanding of where the person with cancer stands.
my current opinion is that if you have cancer, and are alive, you are a survivor, which linguistically is the most accurate of the limited choice of labels we have to work with.
I still think labels are important, both to manage expectation levels of those with cancer, as well as to inform others who aren' familiar with cancer where a person stand in general, and help start the conversation with the person with cancer without embarrassing themselves.
So far, the only term that bothers me that I have found a more accurate replacement is "remission". I have found NED to be much more accurate,and it has no positive or negative subtext. Just clearly means what says.
I applaud your efforts in clarifying the layperson's cancer vocabulary, and would be glad to add any insights that pop up as I am working towards the same goal, assuming I can find your blog again.
I had an interesting experience a few years ago with a Relay for Life event - I was volunteering to help and asked not to be given a "survivor" t-shirt but was told I had to have one - so I didn't take a t-shirt and never volunteered again - I found that the survivors who walked first were always pretty maudlin and crying/etc - that's being defined by cancer!! I know everyone's a survivor of some sort - ours just happens to be cancer!
I now distrust doctors as annual mamograms stated for 15 years there was no cancer and then the next year I had an architectural distortion which was identified as several cancers of varying size in one location.
Could it be that those of us who have been misdiagnosed for years are prone not to declare themselves as "survivors" since they are told that cancer is microscopic and and can wander around from the original site and reoccur as a metastesis any time from today to more than 20 years later.
It feels ingenuous to say "I am a survivor" and feels like the many years that I was told there was no cancer in the mammogram when indeed that was not a fact.
So someone made up the term and we just get to decide if we are one or not?? I thought it was a medical term. I had surgery and radiation for breast cancer and am now taking a drug for five years. Survivor holds no affinity for me...it's all sstill happening. It could come back or else it won't.
The 3 steps of Human cancers. 1st step is a person who just received the news of Having Cancer. So you are considered a Person WITH Cancer.
2nd step is now you begin to understand the scope and the growth of YOUR cancer, so you become a Cancer Warrior as you and your doctors plan to war with it.
3rd step, the battle has been won, now you sit and wait to see if the enemy is really Dead as the wait goes on you are now becoming a Cancer Survivor. As a survivor with a renewal of Life you start to question HOW can I protect myself so I can LIVE a Life without Cancer.
You start as a Person With Cancer, continue with becoming a Cancer Warrior, and finish with Being a Cancer Survivor, and defender of LIFE!
The human body is a frail thing but the Human Spirit is relentless.That to me says it all.I was diagnosed with SLL/CLL 9 1/2 years ago and I have relapsed once and have been in remission for 2 1/2 years.From day that I was diagnosed I have refused to be a victim and I refused to be defined by my cancer. Some may call them survivors but I think of myself as a warrior that has fought a great battle and won.I beaten cancer and have won the chance to finish my life on a path with heart.A path with heart is a life filled with no regrets and no worries about the future.A path with heart sees the beauty in every second of the life extension that I have been give.Like a Roman gladiator I have made peace with my death and so there is no need to concern myself with what is waiting for me tomorrow. The peace that I have made takes away any barriers between me and what is life. Every day is a gift on a path with heart and so I am walking that path and around me I see what life is and and how special it can be and I am overwhelmed. EHG de Martinez
Regarding the use of the word "survivor", I personally have no problem with it. I think that everyone who has had cancer goes through many different emotional challenges and are entitled to think of that experience any way they like. If some people feel like they survived going through something horrific and are still here, more power to them. The term survivor doesn't necessarily mean you are a survivor forever. You might have survived a plane crash but that doesn't mean you are immune from surviving another crash. I have been through chemo treatments 5 times. My remissions have not lasted for much more than a year at most. I do not feel like a victim or that I have been labeled. I am very grateful for going through all my treatments and having survived, meaning I am still here. Yes, the cancer will probably reoccur and I hope I survive the next treatment too. I'm at peace and hope all who have cancer will find their own inner peace. It's not easy, I know.
This conversation means a lot to me as an educator and someone who works with people living with a cancer diagnosis every day. I appreciate hearing from each and every one of you! What I do know is that your ability to put your feelings into words will help others who are in the same place as you are...living with cancer, but not defined by cancer.
Labels are just words and the actions you take are worth much more. I found out I had cancer when I was pregnant with my twin daughters. They just had their 5th birthday. I have a genetic mutation and my daughters have a 50% chance of having the same. I chair the Relay for Life dinner for survivors and caregivers because it is a celebration. I do not do it for myself but to show my daughters that cancer is a diagnosis but does not make you who you are. Cancer has surrounded my daughters their entire life as we have know people that have continued to fight the battle and others that fought for a very short period of time. They will need to start testing at 10 years old because of the genetics and I never want them to be scared. I can tell you I have enjoyed each day more deeply and do not have regrets. My house may not always be clean but I never say no to reading a book or playing with my children. Am I a survivor? Yes. Am I a thriver? Definitely. But most importantly, I am a wife, mother, daughter, sister, friend, etc. and God has blessed me with today.
Amen Jan. Peace be with you
I have never liked the term "survivor." There are many others in the world who have just as serious diseases as cancer. In 2010 I was told I was terminal, but am still here. I responded unexpectedly to some treatment. More recently my cancer has progressed yet again. No other treatments are feasible, I've had them all. To be honest I am just tired of the struggle and ready to accept an inevitable part of life--death. Our society has such a hard time accepting it. Friends and family help. However, right now I just want to be by myself and not listen to empty conversations. I am at peace in my own way. It's hard to say how long I'll be here. I think that the hardest of all this is that it is always hanging over your head. Nature helps me to be at peace the most. I have made the most of the last few years enjoying nature, my friends, and being thankful for each day. All any of us need to do ultimately is accept God's plan for us to be at peace.
Thank you Judith. I am familiar with Theodore Dostoyevsky.We have The Brothers Karamazov on the book shelf. Might get it down and look at it again. It has been a rough week. One of my former co workers died from cancer this week and another has been told they cannot do any more. However, I also have talked to a couple who have been on this journey for twenty and ten years. So, that tells me no two patients are the same. I made Pigs in the blanket today (rolled cabbages). So, I am trying but not doing a very good job I guess. I just cannot deny have cancer for the third time
I have decided to ignore any words to describe me other than a cancer patient and hope it will not even be necessary to discuss it.in public We had an inspiring double rainbow over Lake Huron last night. . it was inspiring. Thank you again got noticing and I just might eat a hot dog soon.
AW, we don't have to be labeled anything at all. We are all people who have suffered misfortune from what seems to be the plague of modern times. I know you must be tired. So just know that I've read your post and I do care. About you...about me...about the others who have suffered...we need words to express how we feel...and most times, the words to communicate about cancer are pretty awful so we "clean" them up and use substitutions and euphemisms. Feel better and do whatever comforts you...watch TV or read Dostoyevsky...or eat a hot dog...or cry...or laugh...but know that I noticed your response and care about you....
I too, dislike the term survivor, (I am Thank God cancer-free for the second time)I don't define myself by what I went through, I define myself by the kind of person that I became as a result.
Thank God I have awesome family and friends who are comfortable enough about it to laugh and joke about it in a sensitive way.
May God grant you all good health and many happy healthy years.
continued......I am so tired and I would bet there those of you that would like to admit it and do not for fear of criticism of family, friends and doctors. Thanks for listening.
Survivor, thriver, prethriver...why do wehave to be labeled anything. One who has diabetes is called diabetic. Knowing that is something they will live with the rest of their life. cancer is no different. The word Survivor, in my opinion, is just a jingle word to give false hope and raise money. It give a person a false sense of hope. I thought at the end of my first five years I am a survivor and then "bingo" a re occurrence, then the second round of treatments and once again after five years I am now fighting it again. This time it can only be put into remission and no cure. Isn't it more truthful that once you have cancer we are not a Survivor but trying to survive. What is wrong with just saying you have cancer for the rest of you life just like many other diseases. I do not participate in Relay for Life as they have a dinner for survivors a victory lap for survivors etc. I am not a survivor. I am being kept alive by medication and treatments. Face the truth there is no so called Survivors. Well, that may be pretty strong I imagine there are long time people getting through the disease over many many years but are we surviving or survivors. Or just plain canceretes. As far as mutation goes there is a lot to think about before putting the family through that. Does a young girl whose family is prone to cancer really want to have a hysterectomy or bilateral on a blood test. Seems like it would put unnecessary anxiety on them. To be truthful I am so
I have enjoyed reading all your posts. I am 5 years " no evidence of disease" lynch syndrome colon cancer. I really do not label my self other than I will live forever without my colon and have follow up appointments. I also really hate all the language about fighting and being brave etc. I am a hospice nurse and no patient I have ever met wanted to die but sometimes it happens, it's physiology and sometimes there are no treatments. I do like previvor because my 3 kids in their 20s are in this place. They have the knowledge that this gene is present and they can make informed choices about their health and that gives them power and control which at their ages is huge.
In my metastatic breast cancer support group, no one considers herself a "survivor." We are not gloomy or fatalistic women, but the statistics speak for themselves. Three members have died in the three years I have attended; on the other hand, one woman has now lived five years beyond diagnosis and another, more than three years. So we have come to terms with our cancer, but we continue to be engaged with the things that bring meaning and joy to our lives.
I just had a mammo done and they asked me to come back for the another check. Paniky, I was thinking the worst. I got the check again, and guess what?? I was cancer-free! I like the thought of being a previvor. I posted it and everyone thought I just got done with treatment. I think it should be brought to the attention of the public of what it means to be a previvor.
Interesting perspective, previvor. I am one of those diagnosed with primary myelofibrosis. There is no cure treatment, only trial drugs to alleviate symptoms. Until you are at the transfusion stage, there is really no treatment, which eliminates you from the cancer centres where they have support groups. I guess this would put me in the thriver group, as I am thriving completely on my own(along with the internet which guides me to diet regarding my blood counts). I have thrived for four years since diagnosis. I do find the lack of support frustrating. Family can only do so much empathizing. I live every day to the fullest and love life dearly.
I had no pain before my cancer diagnosis in 2010. Now I live with pain daily as a result of my treatment. What I am surviving is the treatment....not the cancer. I watched my 89 year old mother-in-law die from cancer. She didn't do chemo so she had none of the side effects of treatment and lived with pain for only a short time. I'm not so sure that by choosing life on earth via treatment is really surviving. Maybe life with Jesus in eternity is what God intended for us survivors!
I was diagnosed with breast cancer in February 2013. I have completed my chemotherapy and radiation treatment and have just started my Hormone Replacement Therapy. I also like the term thriver. To me it means that despite the diagnosis and treatment you are thriving, in other words using myself as an example I am feeling good and positive and getting my life back on track. I have tried as much as possible to keep my life "normal" while having treatment and have managed to continue working. I have been very fortunate not to have experienced serious debilitating side effect, apart from tiredness, slight nausea and hair loss. My hair is now growing back and my next check up is in 4 months time. I am feeling strong and hope I continue to feel that way. I still rest regularly but am trying to start doing the things I used to do before my diagnosis and treatment and I am enjoying and appreciating them so much. It is like coming out of hibernation.
I am a cancer patient - diagnosed with Carcinoid cancer metastatic to my liver 7 years ago this december. I have had two surgeries and a chemo-embolization. I feel like cancer is a chronic disease that has to be treated not unlike diabetes. Just have to stay ahead of it - get treated - and live your life as normall as possible!
Reading the posts, I was most gratified to see that others also take issue with the term "survivor." The definition of survivor & anyone who has taken French in school can attest to, is "one who lives on." NO one lives on forever. I have had 4 different unrelated cancers so I have learned that "survivor" has no real meaning. If this desease comes to me again, will I be a survivor? Even though I am healthy, hale & hearty right now, I prefer to be designated as a "cancer patient." Yeah, that's a downer but it's realistic because that's what I am, with periodic tests & visits to my surgeon and oncologist. I am tired of the euphemisms & battle talk about people who have had the misfortune of getting cancer. I'd like to have a future blog about that, too. No one "battles" cancer whether they live through it or die from it. Cancer is the wrong side of nature & it will do what it wants to do. How we handle our illness is another story.But being brave is not how we handle the actual disease, it is how we choose to comport ourselves. There is so much fear and terror associated with cancer that no other disease has such misleading language when describing it.
Like a number of you, I find "survivor" a bit overstated. A "survivor" should be those who have accomplished something heroic. I have a chronic, rare form of Leukemia and quite frankly consider myself to be very lucky. It has taught me many lessons had I not gotten leukemia would have never known. I am lucky that it is chronic rather than acute. Whether the mutiple chemo's or the leukemia itself has caused permanent damage to my body is less important as I am still alive with a quality of life. I believe we should take all our life experiences, learn from them and make ourselves better people for them.It's not personal, just a part of our lives. I am not a "survivor", per say I have just survived my disease so far. I'm just happy we could share this moment together.
I don't like the term survivor. Some of us don't survive - does that makes us any less strong? Does that mean that we didn't try hard enough?
I appreciate all of the comments made.It certainly reflects how my feelings have and continue to change day by day. I guess for me it is a sort of "Club". There is an ease of similar experiences, similar humor and similar gratitudes that people who have experienced cancer share. I had breast cancer and endometrial cancer (as a side effect of breast cancer treatment). Thanks to all who share their experiences.
I am a survivor/thriver of Stage 3C2 endometrial cancer. I did not consider myself a survivor until I had completed treatment. That treatment was radical hysterectomy, three rounds of chemotherapy, five weeks of external radiation, three treatments of internal radiation, and three more cycles of chemotherapy. I survived the cancer and the treatment. This past spring a marked five years post treatment survival. Now I have no evidence of cancer. I do have peripheral neuropathy and need an ankle orthotic and use a cane or walker when leaving my home. Yet I am thriving. Thanks be to God for healing.
I am also one of those that don't fit well into the category of survivor, because I live with active metastatic breast cancer--have done so for close to ten years! I don't like the "war" labels that have become cultural metaphors for a lifetime journey with cancer. As my mother said, "Fighting doesn't solve anything!" I can appreciate that those dealing with difficult cancer treatments don't always feel much like "thrivers," but for today at least, I like the positive image of thriver, rather than the "war-torn" images of survivor.
I like survivor, except for the implication of victimization. To face and triumph anything has value. But it seems healthy if one can, to avoid letting oneself feel like a victim and all the stuff that implies.
Having thrived even before my cancer, I suppose that makes me a prethriver. So let it continue. Whatever one finds helpful, let it be.
I've read your post about meditation in nature and it is a great way to de-stress. My preference is Yoga Nidra as form of meditation and you can do it outdoors. It's good to do it under the guidance of a Yoga Guru.
the terms are somewhat misleading ,doesn't really speak to the all the different modes ..but the previvor would be disconcerting to those who had not prevented the cancer even though they really appreciate and would love to help any person's effort in that cause . the post here are right-on ..labels. its might be more of something like "THE C CLUB" with all kinds of people and their support groups in the battle for life on a daily basis ..previvor and survivor are all in 'THE C CLUB"
The last word of my previous comment got left off. It should read, and end, ... So is living. ;-)
All that follows is my opinion and my take on my situation. Its personal and doesn't necessarily pertain to anybody else. I have terminal cancer. CLL. I am in remission. Given the advanced stage of the cancer at the time of my diagnosis the remission will not last. Now "will not last" doesn't come with an expiration date and neither do I. At some point my cancer, and it is MY cancer because it IS a part of me (MY body), will be the death of me. So I never refer to myself as a cancer survivor. I have cancer and I deal with it. Dealing with it is the real issue, not giving it a label so that it can be compartmentalized and perhaps somehow separated from ME. Dealing with it requires the answer to one primary question. "How?" I was taught to love others as I love myself, which means I need to love me. My cancer cells are my own cells run rampant. They are a part of ME. So how do I deal with my cancer? Simple. And simplicity ought never to be confused with ease. I love it. I love my cancer. My definition of love is the hinge upon which my life, and my cancer, remission and all else, swings. To love means to honestly want the best for fill-in-the-blank and help bring that best about if its appropriate for me to do so. Because at times the best way to help is by taking a "hands off" approach, especially if I don't know what I'm doing. My cancer requires loving hands on and doing the next right thing. Cancer,survival, and love are just that simple. So is
Sorry, DNA-DID NOT ASK. THANKS.
Labels, labels, labels...I don't like any label per say that people define me as a person in a category. But, I do like individuals I trust, have faith in, respect, just good people who mean well. Selfless! In medical circles many disease groups are so supportive to each other, it is a honor to be a part of them, courageous individuals who have a passion for a CURE.
They don't want others to ever suffer the pain of what they experienced.
The transplant people and their families are beyond my imagination in faith. Life, is so precious, daily, daily we wake up with gratitude and go to sleep in a bed wherever. I have a dystonia, a neurological movement disorder, and am a volunteer advocate. I feel I am blessed with the disease because I am doing things in life, I never would have done and learned about life. But, I am very much supported and validated by other DMRF advocates and individuals who live with it and go for the cure!
Somehow I never have felt like I was defined by dystonia, we are so much more than an illness or disease. But it may be that from the disease we become more of what we are here on earth to do, GIVE LOVE, BE LOVED. Elle, I agree with you, who wants to be defined in one or two words, we are so much bigger than labels...don't even like fashion labels that's why I make all of my own clothes. Elle, laugh, at least cancer is cancer, dystonia is not known..".can we caught it from you?" I
wear dark glasses and a hat night and day. DNA-DID NO
I think these labels are ridiculous. I had cancer 12 years ago and I am not defined by it. I have also had appendicitis and many other illnesses over my 50+ years. I am not defined by any other illness I have had, why should I be defined by cancer?
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