Recently, we asked our Facebook community this question:
We often hear the words “survivor” and “survivorship” in connection to breast cancer. If you’ve finished treatment, you may feel comfortable thinking of yourself as a survivor; others might be uncomfortable with that word. And some living with metastatic disease consider themselves “survivors” as an ongoing part of living their lives; others don’t see it this way. How do you feel about the “survivor” words?
Here are some of the responses:
It offends me. Stage 4 is terminal. Calling me a “survivor” is denial. I am living as fully as possible now, but, eventually, cancer will kill me. Just call me [name withheld] and then hug me.
I struggle with the word survivor because others I knew were too but died of cancer eventually. I just like knowing I survived 1 day at a time and in June it will be 13 yrs since I was told I have breast cancer.
I don’t think of myself as a survivor but I am a warrior. I will always have to make sure to get my mammograms, pelvic ultrasounds and keep my fingers crossed that there will be no new diagnosis in my future!!
I don’t like the term. “Survival” isn’t my goal in life. Thriving is my goal. Survival was tolerating what happened and continues to happen. Thriving is finding something to gain from the experience, paying it forward, and having no regrets.
Ten years ago I was called a “patient” or a “victim” of cancer. Go ahead and label me “survivor” now. All that matters to me is that I’m “alive” and “living”!
I hate that word. How do you know if you’re a survivor unless you die of something else? Maybe I am a little hard, but I don’t want to call myself that then have it come back.
I think of it as surviving! Even when treatment is complete, most of us are left with the fallout. Pain, both emotional and physical is too often ignored by all around us who say “but the cancer is gone.” If they only knew. There is no such thing as gone.
For me, I don’t mind being called a survivor… I have survived many things in my lifetime. I’m very thankful for all of my tribulations, because I was strong enough, though I didn’t think I was at the time, to survive them all!
To me the word “Survivor” does not mean surviving from ill event …
To me the word survivor means a lot to myself because I can carry my life totally in a different life style which I never had earlier with a different routine with which enjoying my life in a constructive way to some extent. Somehow this word gives a new ray to me as well as to other patients who are undergoing treatment to feel that breast cancer can’t take away one’s life so easily but it provides them a hope to live life again. So I am proud to carry my life with this word.
My mother has metastatic breast cancer and although she is living comfortably for the time being, she will not survive this. “Living with cancer” is more appropriate in her case much like one “lives with” any other chronic illness.
It’s fine people can call me survivor. For myself, I’m just me and who I am living life!!! It was another roadblock in my story.
I not comfortable with having a battle against cancer. I just did the treatment, what needed to be done. So far I guess I am a survivor or am I just living.
I think the word “survivor” relates more to “surviving the brutally harsh treatments” than it does traversing the intricate details of this disease. People survive war. People thrive through adversity… Have we really survived something we still and forever worry about? Obviously, I am not a fan. No clear meaning to me.
Well, I’m not dying today! But I don’t understand the word! I was stage 1, supposed to be great forever, but instead only made it 1 year. Now stage 4 with lung mets. So survivor to me is a hard word. Lifer more describes what I feel. My onco says I’m great, but I don’t feel great 10 out of 21 days. But, I’m alive… not dead today and the sun is shining!
All I know is, at stage 4 with metastatic disease, I survived today. Many people who believe they are survivors will probably have a future recurrence. I’m surviving… a day at a time. No labels….
Yes, I am a survivor but it does not define me. I am so much more. Yet I remain thankful for every day.
I think of myself being a normal human being, getting on with life, sure, I have a deep rooted worry, but I try not to dwell.
I am not a fan of the word, but I use it sometimes because I haven’t come up with a good alternative either. Still it bothers me.
Survivor, how? That’s why I hate labels. We survive treatments. We survive the emotional woes ups and downs and side effects and such. But being there is no cure for cancer, how are we survivors? All we can hope for is NED. I guess you could say we survive each moment we know we are NED but that doesn’t do much for me.
I don’t think of myself as a “survivor.” I think of myself as someone who has been treated for cancer, like many others, hopefully it won’t come back.
We are are each a survivor from the day of our diagnosis. We aren’t guaranteed how long that will be…Every one is terminal from the day of conception. Just depends on how long life is given to us.
The labels don’t bother me. I have been “cancer-free” for 14 yrs. I think of myself as a survivor because cancer-free sounds strange. How can I ever be sure I am cancer-free?
As the song goes one day at a time and yup I am a survivor don’t mind being called that just so very grateful to be alive.
I never liked the term. I had cancer almost 13 years ago. Of course I think about getting it again, but not as often as I used to think about it. Mostly it’s just a disease that I once had.
I don’t want to be called a survivor. I want to be called blessed! I was diagnosed with breast cancer early stage 1. I had double mastectomy with reconstruction on February 9, 2016. I’m blessed to be home healing, amen.
Am I survivor I suppose I am, but when diagnosed with cancer I gave it to God. Trusting God helped me survive. So maybe I am just blessed. That works for me.
Well, I think I am survivor, but that doesn’t mean forever! I will still need to be accountable for my health… annual mammos, paps, and all. I, unfortunately, have a family history of cancers… but right now, I am going through radiation for breast cancer that we caught early on a mammogram. Lumpectomy and cancer is gone… doing maintenance to hopefully keep cancer away.
It’s ok, I use Pathseeker even tho I prefer survivor to all that journey business. Maybe if they had rehab for survivors I would feel differently about the “journey.” But I know people object to survivor so I just chose a middle way.
About to actually go for my survivorship but I guess with the unknown I don’t feel like one. Yes I survived the surgeries but can we be 100% sure we survived the cancer. I’m still terrified mine is still there. I guess it can be a positive and negative thing. I’ve made it this far, and those of you that have as well I’m glad you did.
I asked my oncologist what my “status” is. She said I am in remission up to 5 yrs. After 5 yrs with no recurrence, I will be cured. A survivor? I’m really not sure when I’ll reach that point.
Don’t like the words. I have stage IV which at some stage is terminal but I don’t think of it and that way, I live each day and am happy.
I like to say that I experienced cancer or describe my “journey with cancer.” To me, “survivor” implies that I did something to be cancer free, when in fact it is simply good luck that, so far, my cancer has not come back or metastasized! Those that have died from cancer or are still dealing with it are no different in their character or their determination or their hopes than those of us who are currently cancer-free!
I am a survivor and I am very grateful every day but there’s always that fear of it returning.
It makes me feel like I’m jinxing myself. I survived for now, but that can always be taken away.
I’m not a fan of labels. I’m just a girl who had breast cancer grateful for every day. Aren’t we all just trying to survive?
I am also a survivor because I put my life in God’s hands six years ago. Amen.
Survivor? The days I have no pain maybe! Survived another day.
I’m not a breast cancer survivor, I’m a winner girl. My oncologist tells me “My powerful girl.”
Don’t think I’m a “survivor” just because I’m NED. If I die of something else, then I’ll know I was a BC survivor.
I’m in remission — Feb 16th will mark 1 yr — every day is a gift to survive 1 day at a time.
I’m aware that the words cancer free are premature in my case. I’m still living with the ongoing fear of a recurrence of breast cancer or the development of a secondary cancer. So, it’s important for me to celebrate milestones along the way and I’ve learned to accept the term survivor. I’ve overcome a great deal and I’m still here two years after my initial diagnosis.
Survivor? Or is it a warrior?
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We invite you to share your thoughts about being called a “survivor” in the comments below.
funthing42 says:
Please help I’ve been surviving since 2009. I started with a small stage 1 no nodes. Lumpectomy and rads. I had 4 years but didn’t realize it was the best time I would have after being dx’d.
It returned 12/2013 .Jan 2014 I removed both breast and hit up the chemo still no nodes envolved. Finished in July 2015.
1 month later after chemo it came back in my skin locally .
This time more Rads. Well I finished the Rads last April 2015.
I went for a Onc f/u and my CA markers are up of course did the Pet scan found out today it showed a node in the axilla region.
So my opinion of survival is jaded. But thank you for sharing it helps.
lisa2012 says:
Never liked the word. When people say it I say, or think, “for now.”
4 years since diagnosis, including BRCA positive. What are the odds? My sister is 11 years out. So we will see how it all unfolds. But it does seem like a recurrence is not unlikely.
trinigirl50 says:
I don’t like the term. It gives cancer too much power. We don’t ‘survive’ life. We live it. I didn’t survive cancer, I had cancer, I treated it and I am living my life. Hopefully I will live long and well.
BookLover1944 says:
Let’s face it: you are either surviving or you are dead.
grangran2 says:
I too don’t like the word either, I had breast cancer in both sides, had surgery lumpectomies back in September 2015. I also had 33 treatment of radiation, and now I am living my life, but it does change your life completely and you always have feelings is it really gone. The afterward effects I have a lot of muscle spasms and cramps and just the emotional side as well. But I am very blessed as I gave it all to God and he saw me through and still is caring for me through the times I feel down.
Cookies says:
I don’t like it: it is positive and that’s important but too often we finish treatment and everyone around us expects us to “flip” back into who we were before the diagnosis and often we have physical and emotional health issues that have changed who we are. I feel the term glosses over the collateral damage of treatment and the threat of recurrence. Maybe No evidence of disease would convey to those who have never had cancer a better understanding but it doesn’t examify hope –
Dancebyatree says:
i am thankful to be a survivor since 2001 , even though the journey has aged me greatly. i have multiple joint and pain issues , obesity , depression , and have recently been found to carry mutation called lynch syndrome.
SusieM49 says:
Interesting comments- I can see all sides to this. I personally feel that as soon as I was diagnosed I became a survivor, because it DIDN’T take my life. We found it before that happened, so I survived what could have been.
MaddieH says:
I think the term ‘breast cancer survivor is the hokiest term the medical community has foisted on women with BC. I figure I will be a BC survivor when I die of something else. After a lumpectomy (DCIS stage IIA), chemo which left me with permanent CIPN, and radiation, my quality of life is crap. And in today’s article about AIs and why you should take them – well yeah! AIs will cause bone loss, cognitive decline, a poor lipid profile, and joint pain because the function of the residual estrogen post menopause is the support of bone health, joint health, maintenance of a favorable lipid profile, stable weight, and cognitive function. So if you take the AI, which I don’t, (the final insult) then you have to take a med for the bone loss, a med for the cholesterol, NSAIDS for the joint pain, splints for the carpal tunnel syndrome, and as far as I know, there is nothing for the impaired cognitive function. Is it any wonder women are depressed?
MaddieH says:
I realize that my post above is quite negative, but is anyone out there delighted to have BC?
Idun says:
When I was first diagnosed with breast cancer at the age of 31, I felt so blessed that I was caught early. I did not need to undergo chemotherapy or radiation, but had mastectomy and reconstruction in the same surgery. I was A SURVIVOR! In my heart I knew though that my relationship with breast cancer was not over, since it was very common in my family. I had BRCA2+ diagnoses in 2008 and following I was dx with breast cancer in the other breast that had spread to the lymph nodes. I had mastectomy, followed by chemotherapy and radiation. I still felt like a survivor, but a bit less. In 2012 I am dx with mets in spine. It was my hardest news in this crazy cancer life I have lived in. Still I was in some kind of survival mode. Then it hit me when I attended the support groups. I had become the elephant in the room and I didn’t fit in anymore. Not until I was so fortunate to learn to know a little support group of few woman in same situation, at similar age, having young children, and we could share our fears and feelings of being livers knowing the end was somewhere around the corner, we just did not now how far. I have sadly to say followed some of them already to their graves. And sadly I have started tolerating the survival term much less and frankly it gets on my nerves. The pinktober makes me plain sad, but I know the participants are meaning well, celebrating “survival” and reminding women to learn to know any change in their breasts. But the money gained and the money spent does not come to a benefit for cure, and certainly not for research for curing metastatic breast cancer. Living with metastatic cancer is so far from living on a pink cloud and I believe we need to make some big changes so much more of us have the change of using the survival term.
B1016 says:
I hate the “survivor” term – I thought I just had a bad attitude! I am so happy to hear that I’m not the only one who feels that way. I had no idea when I was diagnosed how much I did NOT know about breast cancer and treatment. Navigating through all the information to find the truth is so challenging. I view cancer and the treatments as a crap-shoot. I am doing my best to live each day to its fullest and to appreciate every moment that is a good one.
Pinkwashmenot says:
I am so GRATEFUL that you all posted your dislike of SURVIVOR. It is like we are giving all our power over to the word. Bad enough the word Cancer has been weaponized so much that it has driven some women to not even get tested…
But to to add a moniker like Survivor onto the term Breast Cancer is just unfortunate. I am not a Breast cancer Survivor, I am a person with a name on a path that you may be traveling.
The endless celebrations of Pink, the walks, the runs and Pink ribbons are not producing cures – they are producing a cultural system, much like religious traditions, to celebrate the cancer or the survivor.. I’m not sure. Their intentions may be well meaning but are not on point – if finding a cure is their point.
Celebrating Breast Cancer or Breast Cancer Survival seems rather twisted to me. If they ever went through the surgeries, chemo and post chemo meds, the emotional disruptions, they might not make such a wonderful celebration of it. They might be more thoughtful and solemn about it.
Thank you all for your posts. Even if we do not agree, I have gotten much from each.
I am a grateful person who travels on your path.
Lauriemay says:
I have read all your posting I never knew there was a place I could vent. In August 22 2016 I had a double mas and have terrible pain from the nerves I suppose trying to reconnect. Where they use to be don’t know I have had a terrible time with this. I completed chemo July 14 2016 / surgery that was botched that it wouldn’t heal as the drainage tube was leaking air. I just want to say thank you for having some one to vent to.
Laurie May
Lauriemay says:
As for the word SURVIVOR it is just a word. Not a sentence
Just like CANCER is just a word I have found out who my true friends are during process. Some are people stupid sometime so theyou don’t know what to say. They are afraid to ask how you are it is not their fault it is society like lost my father to stage 4 cancer it was awful he would tell me that he would survive 10 days later he died now has gone to be the LORD. Life is to short to be hung up on words.
Enjoy your life
Laurie May
Why2015 says:
As one woman indicated, there is collateral damage that goes along with the breast cancer diagnosis. I know I live in constant fear of it returning. My body has changed. I hate that I lost my beautiful hair and walk around with a short ugly hair, projecting the image of someone I’m not ☹️️. I got tired of wearing the wig and felt it was so fake. The cramps of my leg it’s a paralyzing and debilitating. As the other person said, he had cancer and was treated for it. That is the way I like to think about it. I don’t like the word survivor. Wishing you all well and wishing none of us ever had to be here!
Wisknitcat says:
Thank you so much for letting me know there are others who hate the “survivor” label. I much prefer to be and to be called a “thrivor” .