I have heard the word "previvor" used to describe somebody who carries the BRCA genetic mutation. I strongly disagree with this term. Why should anybody who HASN'T survived cancer even be associated with part of the word survivor at all?
You don't have to agree with me, but I would like to share my opinion. The term "previvor" is offensive and degrading. How could you ever compare something that is simply a higher risk to the battle of breast cancer? That's not even anything close to being comparable. I feel like the word degrades anything that a cancer patient has ever had to go through when battling cancer and that's just wrong. To think that someone is deserving of a name associated with the word survivor, when you haven't actually survived anything, disgusts me. Yes, I am BRCA II positive, but I have NEVER had a breast cancer diagnosis. I don't know what it feels like to have to go through treatment, lose my hair, or even know what it feels like to have something take over parts of your body. I have never had to give up my breasts because cancer decided that they would satisfy it's hunger. I've never had to look in the mirror at scars that remind me of something so painful and something so emotional. BRCA positive people, who have never had a diagnosis, are not "vivors" of any kind. They are simply unaffected people with a high risk. Cancer was NOT promised by this mutation and it is offensive and degrading to survivors to think that somebody who hasn't had a diagnosis would actually feel that they deserve the title "previvor." Breast Cancer survivors should be respected for what they have had to go through. People who refer to themselves as "previvors" only disrespect and degrade the emotional, scaring, uncontrollable, life threatening and sometimes life taking experience a breast cancer survivor has ever been through. You HAVE NOT survived anything unless you have had a diagnosis. Until then, you are only BRCA Positive.
"There's no such thing as adults. We're all just kids trying to grow into life."
Wow - I have to say that I find this entire entry to be very offensive and rude. THIS is your idea of being BRCA positive and encouraging other people with the mutation? It's one thing to have an opinion that differs from another put to completely rip it to shreds the way you've done here, well in my opinion, you should be ashamed of yourself. With a close-mindedness that I can see in the entry I'm sure you'll delete my comment so no one else can see it, and if so, that's fine by me. I'm very sorry I happened across this blog.
ReplyDeleteI agree. No one would ever compare a previvor's struggles to that of a survivor. But it IS a struggle. And it does impact people's lives.
DeleteI disagree with everything you have posted here!!!
ReplyDeleteI can comment and post a lot of things to tell you how offended I feel, but I won´t.
One thing I will tell you is, come back and tell me how you feel when you have gone through all of this mentally and physically.
"I've never had to look in the mirror at scars that remind me of something so painful and something so emotional"
You have NO clue at all!!!!
Disappointed and sad.............
You don't have to agree with the word, but the word, previvor, brings light to a category of women at high risk. Many do have scars...internally and externally (from all the years of biopsies, scares, etc). You are entitled to your opinion but try to be respectful to this category of women. I personally like the name.
ReplyDeleteI have to agree with you Lisa. I lost my mom to ovarisn cancer and only recently (last year) found out I carry a BRCA 1 mutation. After 8 years of being petrified of my own body (my ovaries at the time) as a result of watching my YOUNG and VIBRANT 56 years young mom succumb to this disease ripped my heart out and took with it my confidence in my own health. I only found out my BRCA status after a routine checkup revealed "abnormal" spots on my ovary and an elevated tumor market test. At the time my main concern was only my ovaries- after doctor suggested I test for BRCA because of my mom's disease, I was introduced to statistics that I never even thought involved me- 87% risk of Breast cancer in my lifetime. Now not only was the ovarian cancer risk an issue but now I'm facing an even bigger Breast cancer risk??? Decisions that I didn't want to or ever thought I would have to consider are now staring me in the face. I was a just turned 40 year old mother of two who now not only has to accept the fact that I'm going into forced surgical menopause but also now I'm facing a double mastectomy because it's not really a matter of IF I'll get a Breast cancer diagnosis but WHEN. So YES, I won't EVER compare myself to a CANCER survivor in the same sense but damnit I've SURVIVED the loss of my mother and the loss of every part of me that made me female. I am now living as a different person- I'm living with decisions that I don't wish on anyone. I'm living with the fact that my two children could carry this potentially deadly mutation. I'm living with guilt that my mother didn't get a "warning" prior to her diagnosis. I felt every emotion under the sun when I had to process all this information. I am a "vivor" - I am a PREVIVOR and A Survivor. No I haven't by the Grace of God had to undergo chemo personally or hear the words " you have cancer" but after all is said and done I've fought another kind of battle and in this world we need people to be supportive of our INDIVIDUAL journeys and not tear others down by getting caught in the traps of comparison. You are entitled to your opinion as much as I'm entitled to mine and in this instance I feel sorry for you. You are honestly the only person I've ever come across with such a negative attitude. If my mom were still alive she'd tell me I was a survivor. What I wouldn't give for her to be alive to hug me and tell me that my situation might not be exactly the same as anyone else's but my journey and my pain and my experiences are MINE. Mine to cope with, live with and GROW FROM. I continue to hope that few people harbor your negativity towards a growing group of people who have very unique and scary choices to make.
DeleteTo Unknown that posted on April 1, 2015, Wow! This is my life story as well. My mom passed 22 yrs ago at the age of 48 from ovarian cancer. At 32, I began forced menopause due to having a hysterectomy. At 46, I tested positive for BRCA1 Gene Mutation. My oldest daughter tested as well. In October, I get the privilege to have a bilateral prophylactic mastectomy at the age of 47. I can't even add to this story because you couldn't have said it any better. I was 25 when I lost my mom & it still seems like yesterday.
DeleteI feel very personally hurt by this blog. Not because you disagree with the term "previvor" either. But because you claim we are unaffected.
ReplyDeleteI have been through hell with my diagnosis, because my mother has had BOTH cancers and I know EXACTLY what is in store for me. BECAUSE I WILL HAVE TO GIVE UP BOTH MY BREASTS AND OVARIES IN THE NEXT YEAR. I know many MANY women who wear scars, who do not have breasts because of this...
YOUR WORDS HURT. And I think I have been through enough without judgment from from within the community. You are entitled to your opinion, but you show you have NO idea what I have been through.
I've held the hand of my hairless mother when I got the diagnosis and heard her weep because she felt she "did this to me." I look at my baby daughter and my heart breaks again... did I give this to her?? I live with it everyday. Maybe its not as hard as fighting cancer, but its not without pain.
Her broken heart, my broken heart mean something. Maybe not to you. But to others--
I found the commentary hard to read as well, I have to admit. I have known so many BRCA previvors over the nearly 12 years since my own breast cancer diagnosis and treatment, and watched how so many have gone through the loss of their breasts for preventative reasons and without any acknowledgement that they have had a tremendous loss despite not even had breast cancer -- and also virtually no acknowledge from the breast cancer community that they to have lost their breasts, as previvors, because of breast cancer. Perhaps someday you will be able to step back and see that previvorship is in fact, and in most cases, very early stage breast cancer.
ReplyDeleteI can understand that you don't want to be associated with the term, because of how you'd like to view your BRCA2. But that is not the case for others and to use the word "disgusting" for their choice of identification of it is simply hurtful and unnecessary. I'm a BRCA2'er as well albeit not a previvor -- and consider myself more than a survivor -- but respect what others need to do to cope with a BRCA 'diagnosis'. I hope you find your way to this too since, as BRCAers, we are all in the same boat no matter how what peripheral titles we choose.
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ReplyDeleteOMFG! I AM a Breast Cancer survivor, so here goes: You are a disgrace!!! My twin sister IS a Previvor & in my opinion, is stronger & braver than I. She went through a hell of a lot MORE than I did! She ELECTIVELY chose to have a bi-lateral mastectomy after finding out she as well had the BRCA2 gene. She experience the SAME emotions as I did. As a woman, losing her breasts, & much more. As Maxine would say..."Did you eat a big bowl of stupid for breakfast?" I am SO offended by this post!
ReplyDeleteHi,
ReplyDeleteI wrote a blog entry a while ago expressing my distaste for the word "previvor," because I don't feel I am a "survivor" of anything and I don't think my battles are anywhere near as hard as they are for someone with cancer. On this I agree with you.
At the same time, it is important to recognize that BRCA+ people who don't have cancer are not "unaffected." Most of us are dealing with this issue medically in some way -- whether it be through surveillance, chemoprevention, or prophylactic removal of healthy body parts. These things are not insignificant. I am an otherwise healthy 28 year old woman, and I know people my age at my level of health with no health insurance. This would be much more difficult for me, seeing as I would have medical bills totaling several thousand dollars a year if I had no insurance. I can't take the risk of not getting bi-yearly tests because I am only three years younger than the the earliest diagnosis in my family (which was not an early stage diagnosis), making me at risk NOW. Furthermore, most of us got tested in the first place because we knew of or even watched family members die of breast or ovarian cancer, and there is an incredible fear, and an incredible amount to deal with mentally and emotionally. As you write your own blog about this, I am quite certain that you understand this. I do not think that it is disrespectful and degrading for a woman, if she chooses to do so, to apply the term "survivor" to herself. I do not choose to do so, but I understand how other women might. People have applied "survivor" to things far less significant than BRCA mutations. I hear students call themselves "survivors" of finals week. Is this not much more insignificant than dealing with a BRCA mutation? The word "survivor" has multiple meanings, and no one who identifies as a "previvor" is saying that she has gone through the same thing that a woman who is a breast cancer survivor has.
Wow, how can you judge when you have never had to go through it in your life? I have never been throught it, but to watch someone go throught it, is an awful experience. To lose parts of your body that make you the most divine creature on this earth is hard to go through. I just hope you never have to go through the Previvor part or the Cancer part, because you will have to eat your whole blog and wish you never wrote it in the first place. Remember you never know what life surprises may be for you.
ReplyDeleteI agree with the others who've left comments here, and I disagree with your position. But I just want to point something very simple out: the root of either word, survivor or previvor, is the latin word vivus, which means life. Both groups of women have confronted their lots and live despite the complications. The emphasis here, for either group, should be how to LIVE, fully and gracefully, with the experiences they've had. This community should be about celebrating life, not condemning or belittling women who are on the same difficult journey as you.
ReplyDeleteIn response to the abundance of comments, no, I am NOT going to erase anybody's comments. Yes, you might not agree with my OPINION and that is fine. I encourage comments. This is simply my own. And it seems like many of you have forgotten that, yes, I am dealing with a genetic mutation as well. And I actually have seen somebody go through Breast Cancer, My Aunt. For any of you to say to me that I don't understand or am stupid, you must have forgotten and obviously haven't read most of my blog. I have seen how cancer takes over a woman's body and for that reason I don't feel we should be glorified with the word previvor because we ultimately have the choice to keep our breasts and ovaries. People faced with a breast cancer diagnosis don't have as much control. And yes, it is emotional, but what isn't in life? At least you don't have Breast Cancer and you can control that and yes, Betty E. there may be many surprises in my life and I fully REALIZE that Breast Cancer might be one and if I didn't then Lyn, I might have "eaten a bowl of stupid for breakfast."
ReplyDelete*And when I say control over Breast Cancer I mean that we have the choice to remove our breast and ovaries because having the choice means you have some control.
ReplyDeleteI am BRCA2 and I agree with what most of what these women have said. You are entitled to your opinion but to openly insult those that you are supposed to be helping is just disgusting. Why blog about it if you are just going to insult others (which is exactly what you're doing) My cousin chose screeing for years rather than take the test. When she finally decided to have the preventative surgery to remove her ovaries, it was too late. They went in to remove healthy organs and came out removing stage 3 cancerous organs. I bet if you ask her, she would tell you that she would have rather been a previvor than survivor. Just because we don't have to deal with chemo or radiation or hair loss or any of the other horrible things that comes along with cancer doesn't mean that we haven't been affected! I know that you say removing healthy body parts is a choice but what's the alternative, playing the waiting game. Watching our family members die of breast or ovarian cancer. Hiding our heads in the sand. No, we take control Empower ourselves. If you don't like the word previvor than don't use it but don't for one second feel that you have the experience to judge others. I have spoken to many cancer survivors who, if given the opportunity to be proactive about their health prior to a cancer diagnosis would have jumped at the chance. We are just as brave and just as affected and if you feel that you need to ridicule and insult others, I don't see the point of your blog. You have alot of growing up to do.
ReplyDeleteYOU, might see it as a choice. I do not. I do not see making sure I do everything I can to be around to watch my children grow up and be there for them as choice.
ReplyDeleteI really struggled when I read your response to our comments, "glorified?" I do not see anything glorious about what I have been through. My great grandmother, grandfather, aunt all DIED. My cousin nearly died at age 28. They told us my mother would not survive ovarian cancer.
No its not a choice for me. It's a fight for my life to be a part of child's life.
I don't like the term "previvor," but I do not think it's used to glorify people. It's simply a term that some people use to describe their own situation, to bond with other women, and to relate their situation to the outside world. You are welcome to your own opinion, but you would have probably gotten a different reaction if you hadn't been insulting to other women who have been through a lot in the process. You have gone through, you are going through, and you will go through quite a bit. As a woman with a BRCA mutation, you have it tough. What people have a problem with is when you minimize their experiences.
ReplyDeleteMay I add another, negative voice to this conversation? I am a BrCa 1 previvor. I had many conversations with a friend who had breast cancer and chose the bilateral mastectomy, about 4 months ahead of my prophylactic, bilateral mastectomy. Yes, she had BC and luckily, no further treatment for her was needed. But one day, over lunch, she said to me, "I think your decision was harder than mine!" And I think she was right for many reasons. It's never easy to contemplate a difficult surgery, but if you have cancer, the decision might be to "just get rid of these things because they will kill me." Her decision is the only choice, so really, there is no decision. I had to make the same decision, only deciding to surgically remove perfectly healthy breasts. It was the most difficult decision I have ever made. And "previvor" does not mean the same as "survivor." The important difference is in the prefix. The suffix vivor means "someone who manages to stay alive." That defines both previvors and survivors.
ReplyDeleteI'm not minimize there experiences and how is the term previvor maximizing them at all. And if that's all that the term does, is maximize, then isn't that looking to have their struggles recognized? I'm sorry if this is offensive, but I am not somebody who feels sorry for myself. While this mutation could bring negative things, there are people out there who have it way worse. While everybody is sitting here trying to talk about everything they've been through and how I'm a bad person for my opinion you haven't stop to realize that little kids lose their lives to cancer. That's a hell of a lot worse than our situations. And there are much worse situations out there. Do I miss the people that I've lost? Hell yeah. Do I sympathize for them because of what they have had to go through? Hell yeah. Am I going to sit here and lie and say that my risk isn't ever scary? Hell no. But I am not going to sit here and feel bad that this is a reality that I have to face. Yes, life throws you curve balls, but that happens to everyone. Everybody has to try to get through them and because of that, I am not going to sit here and try to make my situation seem so much worse. With power and strength I can get through it, but life isn't easy. That's nothing new. I don't feel that I need a word to describe my situation because that word does not describe me at all. That word does nothing for me and does nothing for my situation so I will not be recognized having anything to do with it. If you have witnessed loved ones who have had to go through a diagnosis like this, I would think you would realize the difference between the two situations, but I guess I must just be in outer space.
ReplyDeleteHmmm...well let's see, I had my PBM on May 4th 2009, w/immediate reconstruction using implants...after suffering with SEVERE infections and developing necrosis 3 weeks later, I was back on the table, having the implants, the necrotic tissue and most of my pectoral muscles removed...and had tissue expanders put in. Approximately 13 days later I was on the table yet AGAIN, with infections so severe the expanders came through the skin. I have lived without breasts now for 9 months, and am finally being reconstructed...yet again...So guess what? I am a SURVIVOR!
ReplyDeleteI follow this blog regularly and always enjoy reading the posts. I, too, am BRCA2 positive and bristle at the term "previvor" While I agree it is only a word, it is one that I feel is unnecessary. Yes, it is an affliction. It is heartache. It is torment. It is indecision. It is so much more. But I do not feel I need to put a title to it. Have I given up healthy body parts due to genetics? YES! Have I spent sleepless nights wondering about my future health? YES! Have I given up a part of who I used to be? YES! I very strongly dislike my genetic make-up, or at least this part of it.
ReplyDeleteBut, having said that, I have also sat by and watched my 46 year old mother die of breast cancer. And I have watched my sister receive a diagnosis at 36. She has fought through the treatments to win her battle. She has given up healthy and unhealthy body parts. She has given up so much of herself. So much more than I have. Would I ever say that I have been through just as much as she has? NO WAY!!! SHE IS A SURVIVOR OF BREAST CANCER. I would never presume to call myself a previvor. It just seems like an attempt to draw attention to oneself.
And you people need to give this blog poster a break. Stop calling her harsh names and beating her down. As far as I have seen, she has been supportive in offering her opinion and sharing her experience. Shame on those of you who have berated her for speaking openly (in this open forum)about her feelings and opinion. I, for one, will continue to follow this blog.
I could not agree more with the woman who wrote this blog. You Go Girl! I happen to be BRCA Negative, however I do have 2 sisters and a niece that are BRCA positive. One of my sisters was diagnosed with BC at the age of 35, and I am very happy to say that she is now cancer free. My sisters have gone through all of the preventative measures (double mastectomy, hysterectomy)recomended by their Dr's. All 3 of them live life to the fullest with very positive attitudes, unlike the rest of you who already have your graves dug. I do have one sister who is a survivor, however my other sister and niece are not "previvors". Why would you even want to be labeled in that manner? SO KUDOS TO YOU, for voicing your opinion on this matter!
ReplyDeleteI think that everyone is missing the point. I don't feel sorry for myself. I don't pretend to know what it's like to be a cancer survivor and I personally don't care if you hate the word previvor or not. I care with how you voiced it. You were rude, degrading and disrespectful and if you start a blog to "educate" then you should "educate" and not insult. There's a fine line between sharing your wisdom and insulting others.
ReplyDeleteYou obviously feel very strongly about the term previvor, and you have every right to your opinion. And you have every right to voice it too.
ReplyDeleteThere is a part of me that thinks perhaps you wrote your opinion so harshly only to see if you could ruffle feathers. I guess I just don't understand why there is so much anger and judgement on me. I'm a good person, and I feel like you attacked me. You don't know me. You don't know that I watched my mother die of BC when I was 19. You don't know that I lost two children. You don't know that I decided to have my surgeries which means I will not have any biological children. You don't know how that was my heart's desire since I was a child. You don't know how selfless it was to make that decision so I could be around for my step-son. I didn't want him to see the horrid scenes I did. You didn't know, but you do now. You don't know that I would hold your hand and support you. That I would rally to encourage you and drop everything if you needed me. That's the kind of woman I am.
I understand feeling strongly about something so deeply personal. Why couldn't you just have said that you didn't like the term, and in your opinion, you feel it invalidates breast cancer survivors?
Can I help you walk out your feelings? Are you having a rough time with this gene and the diagnosis since you are so young? Anger is okay as long as it's constructive and not aimed at a community of people whom you don't know. I'm so sorry on so many levels that you carry this in your heart. Again, I'm not sure if you wrote this to see if you could increase your stats or to see what response you would get. Please don't be so mean next time!
Can I just ask a question? Why is everybody emphasizing so much on what they've been through? You're totally missing the reason why I don't agree with the word. I didn't realize that having an opinion made me angry and in denial. Sorry that I'm somebody who is brave enough to be different and doesn't need to go along with the majority of the crowd and can lead in her own direction. Yes, I realized that being different isn't easy, but I never thought I would be attacked for an opinion I'm allowed to have. Yes, you're allowed to have your own as well. I'm sorry about your hardships, honestly, I am. But why does everybody feel that the point of this is to comment and share all their hardships? Thats not the point of this at all.
ReplyDeleteAnd I'm not angry about my situation at all. It makes me angry to know that I'm supposedly narrow minded because I have an opinion that differs from almost every single opinion here. Yeah, maybe the way I stated it was very strong, but everyone here just accepted that word, most likely, without giving it any thought. You probably thought, well thats pretty good and is a word to describe people like me. Answer me this, though. What if the word you first heard to describe us was mutants or broken breast geneticans? Would you have been so quick to call yourselves that?
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ReplyDeleteI do go what all of you go through. I think about all of this all the time. It's hard not to think about it. Is it hard to make this decision? Without a doubt. If I go through with anything am I going to feel like I went through something that a cancer survivor went through? No. Because I had time to think about and I was able to make that choice. Yes, I will have lost my breast, but it was because I knew I was doing a good thing and being proactive; not because a bad thing took over my life and my body. I can't feel sorry for myself. I'm not that kind of person. I don't mind the challenge you all have given me to even make you understand in the littlest bit. I don't mind looking at things so differently that you'll never get it because this is what defines me and makes me stand out. This is who I am and I am going to stay true to it and stay true to my beliefs. Sorry if you can't accept that. I never asked you to. If I was afraid of not being accepted I wouldn't be who I am today.
ReplyDeleteYes, it is supposed to be a supportive place and as you can see when I stated my opinion is wasn't really supported. Thats just how it goes sometimes. Not everybody has to agree. Thats the whole point of a support type group. To listen to everybody's views. You don't have to like or agree with them.
ReplyDeleteI think I can speak for many of us, in saying that we do relate to the term mutant. We can certainly relate with our genes being broken. You just happened to strike a nerve, in an obviously emotionally loaded subject. No matter the path you walk on your BRCA journey, it's good practice to approach such a difficult subject with sensitivity and tact. Previvor, mutant, you name it, we all have a common thread...our genes are broken.
ReplyDeleteYes, we are mutated, but I'm not sure that people would be so quick to label themselves as mutants.
ReplyDeleteI don't even think it is worth anyone else commenting on this blog. BRCAPositive clearly states how she feels and doesn't have much regard for how it lands on others. This is her blog and she is entitled to write what she wants. Freedom of speech at its finest.
ReplyDeleteSo here I go....my freedom of speech.
To all my fellow BRCA sisters, you ARE amazing and you have been through so much. I don't give a damn if you call yourself the Queen of England. "Previvor" is just a word.
Call yourself what you will. I call you BRAVE.
And never once in my post did I say that we aren't brave. How many of you have actually read my whole blog? Because I bet most of you just read this one article and decided to jump down my throat. I just feel like a better way to describe the group of us would be PREVENTERS. Because we are preventing cancer. You can't survive something before that something happens, but you can prevent it before it happens. For the reason, the word contradicts itself completely. Pre means before. You can't survive what hasn't happened, but you can prevent it.
ReplyDeleteAs Catz said, in the end, no matter what term you use, it doesn't change the reality of our situation.
ReplyDeleteI'm not asking you to change your opinion just how you expressed it. I accept you and support your decisions. I just don't like how you said I disgust you. That's a really hurtful thing to say.
Btw, would you say that you are unaffected by this gene if you end up not having children like me?
--The classy genetically broken mutant woman
"Preventers" makes sense too and if you read my post, no where will you see that I said, YOU said that we weren't brave. I think you might be jumping down throats now.
ReplyDeleteAs far as surviving goes (dare I talk about my experiences), I have survived more in the last year than I have in my lifetime all the while watching my mom battle stage 4 metastatic breast cancer. We BRCA+ carriers are ALLOWED to say that we have not only endured horrendous surgeries....we have survived them. All though most of us don't feel sorry for ourselves and applaud our bravery at jumping at the chance to ensure our future, we go through a tremendous loss of body parts. The pain is brutal and not being able to pick your child up is depressing. There are days when we felt like we couldnt take much more, however, we broke through the depression and kept going.
We survived all of that! We KNOW we are not cancer "survivors" but we are survivors in our own right!
Okay, this needs to be cleared up. I didn't mean we are unaffected by BRCA. I mean that we are unaffected by a breast cancer diagnosis until and if we have one. I want kids, yes. I can understand that this is a very hard reality for you and for that I am sorry. I am young and am not planning to remove my ovaries until I have children. If the plan doesn't work that way I will be heart broken, but I will feel that I wasn't meant to have kids. I am not taking preventative measures, though, until I have kids and if cancer happens before that then I feel like everything happens for a reason. I have thought about this, though, and I don't think it was fair at all for people to assume I haven't.
ReplyDelete"People who refer to themselves as "previvors" only disrespect and degrade the emotional, scaring, uncontrollable, life threatening and sometimes life taking experience a breast cancer survivor has ever been through. You HAVE NOT survived anything unless you have had a diagnosis. Until then, you are only BRCA Positive."
ReplyDeleteThose were YOUR words. This is the last time I am going to write, because if you can't see how those statements might have been hurtful to someone who finds strength in that title-- or chooses to cope with our diagnosis in that way then I think you have some growing to do.
We are telling you your statements were HARSH and JUDGEMENTAL, of people who have been through enough and frankly do not deserve any of your judgement.
Even if somedays we feel sorry for ourselves, that does not warrant judgement either.
No one is arguing with your dislike of the word previvor, we are saying you hurt us when we read that you ANYONE WHO USES THAT WORD to degrade our mothers, aunts, sisters, cousins.
You hurt me with the judgement in your words not your opinion. Maybe you should take a step back and reread them. You hurt enough people that they have responded over and over on your blog. I was hoping you might read my comments and understand that hurt. But since you can't, I won't be coming back for anymore abuse.
My mother, a cancer survivor has not a problem with how I deal.
I will tell you that after a couple of years (seven to be exact in my case) you may be a bit less judgemental and cruel.
I am strong wonderful mother, daughter and I don't look in the mirror and "feel sorry for myself."
I hope the next time you lash out with such strong words you think about the person behind the issue you are hurting.
Lisa, if I am jumping down people's throats, why do you think that would be? Have you read all of the comments and have you counted them? There are many negative comments on here. I have posted my opinion about everything else concerning BRCA, but have never once had so much negative feedback. So if I feel the need to defend myself I won't hesitate since everybody here hasn't. Like you said before, FREEDOM OF SPEECH!
ReplyDeleteBri, you have said it well.
ReplyDeleteBRCAPositive, its interesting that now you are feeling hurt by our presumed assumption at you for not taking into consideration all that we've had to take on. What we have all been trying to say is....we respect your dislike for the term. We do not respect, however, how you delivered your blog to the world. Once again, it is your blog and you may write what you please. I don't think you'll find much support though with harsh words like the ones you've expressed throughout this. Through this difficult time it is important to support one another...not judge or condemn. Respect is what we all strive for and what we all deserve.
BRI, I AM THE PERSON BEHIND THE ISSUE. You all seem to forget that. And I have years behind me as well (3 to be exact). Am I a mother yet? No, I am not. I do have a mother, though, and I know how this has affected her. She feels it is her fault, but what does that have anything to do with the term previvor. Yes, those are my words and I'm not ashamed. And I do believe that. You have prevented a diagnosis for yourself. That is a brave and amazing thing. People who have had a cancer diagnosis survived cancer. To me, there is a difference. I never said that people weren't brave. I never said that you needed to read my blog. Like I said before, most of you probably haven't and this is the first you know of. An opinion is not in anyway abuse. I'm sure if somebody belittled your mother and her strength it would be upsetting for you. To me, the world previvor belittles my grandmother's battle and my aunts battle. That's my opinion, though. You don't have to agree with it.
ReplyDeleteBri - beautifully put! I just came back here to try to explain to 'brca positive' exactly what you said. First off, I often refer to myself as a mutant - many of brca+ friends do as well.
ReplyDeleteNo, I have not read any of your other entries - this one was offensive and off-putting, why would I want to read more?
The point that many of these fine ladies are trying to make to you is NOT that they have a problem with your not liking the word previvor. No one really cares about that. In fact, as Mymutantlife above mentioned, she wrote a blog post stating that she didn't care for the term. The difference was she did it in a respectful way. She stated her opinion and didn't feel the need to rip to shred's those that may feel differently.
Your opinion is is just that, your opinion, and yes, it's your blog, to say what you want, how you want. But when you blog openly then you also open yourself up to feedback about what you say.
The problem here isn't your opinion, it's how you've stated it. You've attacked the very community you say you are trying to help. You've told us that we are 'unaffected' - which in answer to your question, is why many have explained to you how they've suffered because of their mutation.
You've obviously struck a nerve with many people - please, re-read what you have written and I'm sure you'll see how very rude, hurtful, accusing and angry your words are.
Again, no one cares if you have a differing opinion about the word 'previor' - it's the blatant and disrespectful way that you shared it while lashing out at an entire group of people that are going through the very same things you are.
I think we all feel that you should have known better, but with each comment that you've made (except possibly the last) you've shown that you aren't really reading the comments that are being left for you, or truly understanding WHY you've upset so many people.
I truly hope you 'get it' soon.
I'm taking it that you blog on the internet because you want people to read it. I believe that although we have freedom of speech, we have a responsibility to treat others with kindness. Many women aren't as strong and secure as we are and look to "bloggers" as a source of comfort and support. They don't even know where to begin most of the time and use our insight as a stepping stone into their own journey.
ReplyDeleteIf you are fine with the backlash and don't care about offending others, than by all means, blog away. Good luck to you!
I don't think defending myself has anything to do with being defensive and I find it ironic that everybody seems to ignore the point I made about how previvor contradicts everything everyone would like it to mean. Like I said before, you CANNOT survive something that has not happened yet, but you can PREVENT IT.
ReplyDeleteTeri, I have read every single comment. And I have read over what I wrote. See, this is the major problem: People don't like honesty. Everybody would like everything sugarcoated so it sounds nice and politically correct. That is not what you will get with me. People are supposed to be honest, but often we find they are not. If you can't except my honesty then I don't know what to tell you, but I am NOT going to sugarcoat things just so that people will accept me.
ReplyDeleteLisa, it's not about offending others. If you had read anything I have written on here you would know that. If you dare, read "Writing Is My Therapy". The title of the post should explain itself. I don't sit down and plan out what I am going to write each week. If I feel a certain way that's how it goes down as I type. I'm not going to treat this as a newspaper column. That's not how life is. You don't plan life out. This should be known from our discoveries of this mutation. If you cannot accept that I write the way things in life happens than take your blog reading elsewhere because writing is how I cope and I'm not changing that to satisfy a world like likes everything SUGARCOATED.
ReplyDeleteHoney, there is a difference between sugarcoating and being kind.
ReplyDeleteYou can be the most honest person in the world and deliver your opinion with respect for others. Thats what people do who care about other people.
I don't believe any of us here have once said that you shouldn't be honest. If you didn't like the term for yourself than writing things like "I don't believe the term fits me because...." and "For myself,...".
We don't care about being PC...we just don't want to be belittled or to have our feelings downplayed.
This seems to be going in circles so I will quit.
You ALL don't want to be belittled. THIS ISN'T ABOUT ME. This isn't supposed to be a selfish matter! "For myself," this is about MY GRANDMOTHER and MY AUNT because I feel that the term previvor belittles everything they ever went through with their diagnosis' and battles.
ReplyDeleteFurthermore, I will not write like that because that is how everybody wants you to write. I have my own style and as I have learned from my favorite english professor, you shouldn't have to do things a certain way because thats what people tell you to do or because thats what is socially acceptable. I dare to write how I want and if this is what becomes of it then oh well. The ones who actually support me are still behind me and for the ones who never were, oh well.
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ReplyDeleteDear Positive:
ReplyDeleteI am a 13 year breast cancer survivor and I'm also BRCA Positive. I am founder of the nonprofit organization Facing Our Risk of Cancer Empowered (FORCE). I coined the term previvor. I respectfully disagree with your post. I understand choosing not to identify with the term, but before the term was coined, those with BRCA and no cancer had no way to organize and advocate for themselves.
I do hope that you will read our blog on the origin of the previvor term, and why we coined it at:
http://facingourrisk.wordpress.com/2008/07/22/previvor-past-present-future/
As a breast cancer survivor, I invented the term to help the previvor community organize and advocate for more research and resources. Sue Friedman For more information on the previvor term, and why we coined it, you can read my blog on it at:
http://facingourrisk.wordpress.com/2008/07/22/previvor-past-present-future/
As a breast cancer survivor, I invented the term to help the previvor community organize and advocate for more research and resources. Before the term "previvor" was coined, the medical term for someone with a mutation and no cancer was "unaffected carrier." This is dismissive to previvors who have to make agonizing and life-altering decisions.
When I was first diagnosed with bc 13 years ago (at 33) and before I knew about my BRCA status I was initially diagnosed as having DCIS (very early BC). After my mastectomy I went to a support group and was told by someone there that I didn't know what pain and suffering were because I only needed surgery for treatment. I was devastated. At 33 I was dealing with issues that my peers couldn't understand or relate to. I felt dismissed and had nowhere else to turn for support. I felt pretty alone.
Nine months later I had a recurrence and required chemo and radiation. I wondered if I had suffered enough at that point for support. After finishing treatment and learning I had a BRCA 2 mutation, I began meeting other women with the mutation...many didn't have cancer but were making agonizing, tough decisions and at that time (before FORCE) they had nowhere to turn for support. I learned many things from my experience:
1)There is no one who "hasn't suffered enough" to deserve support. We all deserve support
2)Life is unpredictable and we never know what the person next to us has suffered through or might suffer through next week or month. We need to support each other.
3)The best way for us to assure better options and research for ourselves and future generations is for survivors and previvors to unite
The term is not meant to dismiss, invalidate, or insult survivors-as a survivor myself, it is not my desire or goal to negate or dismiss my own personal experience and that of my sister survivors. The goal was to validate and shine a spotlight on a community of important stakeholders in the cancer community who were not being acknowledged, and had few resources or ways to connect with others facing similar challenges.
I understand that not everyone will like or adopt the term, but I think that anyone who has to face cancer whether it's through a diagnosis or being high risk shouldn't have to face it alone and deserves support and resources.
For those who are unfamiliar with FORCE and the work we do to improve the lives of individuals and families affected by hereditary breast and ovarian cancer can visit our website at: http://www.facingourrisk.org.
I never said that there shouldn't be support for these people, but I do not believe in or like your term in the slightest. It contradicts itself completely. You can't survive something that hasn't yet happened. Pre means before. You can prevent though and as BRCA Positive people that's what we do. We prevent having to go through what you and our family members went through. I do not agree with the term and I cringe when I hear it. I will not use it because I have not survived anything worth using the word survivor for. There is a difference between surviving and being preventative and proactive.
ReplyDeleteHi Positive,
ReplyDeleteActually the term means:
survivor of a predisposition to cancer.
Some definitions of the word survivor according to the dictionary:
"a person who continues to function or prosper in spite of opposition, hardship, or setbacks"
Having a BRCA mutation certainly can be perceived as opposition and setback. Anyone living with a BRCA mutation could indeed be classified as functioning in spite of hardship and setbacks. Previvors are survivors of a predisposition, vs. cancer survivors who are survivors of a diagnosis of cancer. Two important and distinctive populations both deserving of support and validation.
At the time we coined the term (it was actually in response to someone on FORCE's message boards posting "I need a label") we polled the community for ideas. IMHO the term itself is not as important as the concept of providing a label for an important group of stakeholders. My post above was meant to provide background and context for why at the time (8 years ago) we coined the term. I wasn't suggesting that you are saying the community doesn't require support. However, at that time, when there was much less awareness and support for the BRCA community than there is now, it was a call to action to raise awareness of this group and their needs. We chose the term knowing not everyone would love it but it was at that time what members of our community responded to most and selected.
It has been gratifying to see the issues and concerns of the BRCA community (both previvors and survivors) being considered and researched. I am proud of the role that FORCE has played in shining a spotlight on the needs of our community. The story is not finished and there is always room for differing opinions and further advances in advocacy and action (including new terminology) for those at high risk for disease. But I believe that labeling a community with unmet needs was a good start and has effected positive change for people with a BRCA mutation and no cancer.
Warm regards,
Sue
Yes, that might be your own definition, since you did come up with the word, but the word doesn't even appear in the dictionary. I got enough support without having to be labeled as anything and never had heard the term until I was at a support group a few months back. I wasn't the only one who opposed this term. Yes, you are trying to help, but I don't need a term to describe my high risk. People have high risks for heart disease and they don't label themselves. As the founder of FORCE, one of the leading support sites, you should understand and take into consideration my distaste for this term. I wasn't the only one in my support group who opposed it and I will not belittle my grandmother and aunt's battle by using this word.
ReplyDeleteYou are supposed to represent all of those who are BRCA mutation carriers. It is obvious that you advocate for those who like the term previvor, but for those who don't you have yet to advocate for. I highly recommend that you take this into consideration. You claim BRCA carriers should always have support, since you did not, but you have yet to show support towards those who don't take your coined term lightly.
ReplyDeleteHi Positive,
ReplyDeleteAs I said above, I do understand and respect you in your distaste for the term.
I am pretty sure that given the amount of print and electronic newsletters and other printed materials we supply and the traffic to our website, that there are many among our mailing list who likely don't like the term either. FORCE and our programs are available for all who seek them regardless of their feelings on the term previvor. Other than our conference, our programs which include our expert-reviewed information on the website, our print and e-mail newsletter, our free webinars (one next week on GINA), our toll-free helpline, our outreach groups, and our chat room are provided free for whoever needs it.
I wanted to share with you and your readers the history and resulting change in the landscape that arose from coining the term. As I posted above, I believe that cancer advocacy and the accompanying lexicon of terms are constantly evolving and changing and there is room for more work and improvement. My goal is to educate, not change your opinion. The BRCA experience is a personal one, and in many cases a painful one for the families devastated by these cancers and my thoughts and support are with families facing these cancers.
Warm regards,
Sue
I understand your goal is to educate, but I have been doing that on my own. I know about your support site and although it is great what you did I do not choose to use FORCE. Newsletters and articles can only take you so far. Those aren't going to help me for long. They will help me in the beginning, but that is all. With my experience with FORCE I have found that people are more judgmental and quick to say how you should deal with things. Sorry that's not how I work and that's not how support should work either. Don't be surprised if this isn't the last that you see of me because I promise you that I will make a difference in the BRCA world before I die. You just wait. Until then, you can do things how you please and I will use my blog how I would like.
ReplyDeleteI think at this very moment all the children in ST JUDE who BATTLE CANCER everyday are trying to come up with a TITLE for themselves.Put your efforts more for a cure RATHER THAN A TITLE. These CHILDREN can only HOPE to ever become an adult.AWESOME comments BRCA positive I agree with you. There are way to many people battling cancer or a form of cancer that dont have a title.TIME is PRECIOUS to ALL lets not waste.
ReplyDeleteWell, well, well. Seems I am a bit late to this party. After Sue, Teri, Bri, Karen, Steph and the others have weighed in, there really isn't anything more for me to add.
ReplyDeleteHowever, I will add that the majority of the commenters to this post have responded with far more patience and consideration that the original poster deserved, given the tone of her post.
As for BRCAPositive, you come across like a selfish, spoiled, hard heated and callous little baby who will keep repeating the same tired arguments over and over again despite the fact that so many others have pointed out to you the errors in your thinking.
From where I'm standing, your central argument is disingenuous - this isn't about the term "previvor" as a choice of language issue. It's about the substantive feelings of "pain" and "suffering" of women who face cancer risks - it's about whether those women are deserving of comfort and support because they haven't actually had cancer. But that only makes sense if BRCA positive women must be compared to those who have had cancer, which of course they don't.
But the simple truth is that once you go down
the road of "who's most worthy", you will quickly discover that no one is. Why should women who survive breast cancer get sympathy when there are CHILDREN with cancer? Isn't a brain tumor worse? Or how about dying of starvation in Haiti after an earthquake, for that matter?
The rational grown ups in the room hold the hands of our friends going through divorces as readily as we hold the hands of our friends who's been widowed. Does that mean we think they suffer equally? Of course not. But we don't have to ration our love, our sympathy and our support because there's enough to go around, not matter what you call yourself.
Grow up.
Care.
Dee, Mutant and Previvor
http://sandradginzburg.typepad.com/imamutant/
To quote: "although it is great what you did I do not choose to use FORCE. Newsletters and articles can only take you so far. Those aren't going to help me for long. They will help me in the beginning, but that is all. With my experience with FORCE I have found that people are more judgmental and quick to say how you should deal with things"
ReplyDeleteI'm not even going to engage in a discussion with you about previvor, but I can't let your comments about FORCE go.
FORCE is not a website or newsletter.
In the last ten years FORCE has literally given a voice to this community.
We lobby in DC (for the EARLY Act, the need for genetic counseling, and other issues that impact our community);
We bring together on an annual basis the largest gathering of healthcare providers, researchers and those effected by hereditary cancer to educate, support and share concerns;
We work closely with the medical and research community to share the unique needs of our community and to ensure our community is represented in their research and studies;
We maintain a toll free helpline;
We have support groups in 65 cities across the US so women can connect locally with others in their situation;
We run monthly educational webinars on topics of importance to our community;
And those are just some of the highlights.
I sincerely wish you luck at whatever it is you plan on doing to make a difference and help this community. I respectfully request though that you look at ALL that FORCE does before you reduce us to a "newsletter and articles".
Barbara Pfeiffer
Vice President, FORCE
Comte de, you said this perfectly. I couldn't agree with you more and i love your explanation. Brilliant. I only hope that women who are looking for support after hearing of their mutation don't stumble onto this blog and see it as a form of support because they would be sorely mistaken. I feel that I have wasted enough of my time on this. BRCA positive will obviously remain in her bubble. All I can say is good luck to you and I hope that people in the future won't judge you and your decisions the same way that you have so rudely judged others. I don't care one way or another what you think of the word "previvor". No one does!
ReplyDeleteDee,
ReplyDeleteThe post was not about whether or not people like us deserve support so what you said about that is irrelevant. Your comment isn't even worth commenting on. It's funny how I'm supposed to grow up but the majority of people commenting on this blog are at least over 30. You took my post way too personally. It wasn't directed as a personal article. It was simply how I view the word and how I see it defined. I never called anybody disgusting, but said that I was disgusted. There is a difference. Get it straight and don't let your pride get the best of you. I could care less what you think of me. You don't know me at all. I'm not expecting you to understand and I would never care to make you understand.
Maybe you should take your own advice and do some growing. The world isn't this little narrow place.
Barbara Pfeiffer,
ReplyDeleteSince you are the Vice President of FORCE I see that it is very unprofessional for you to even get involved in this matter and try to even tell me how I should feel. That is just one more reason why I will not be affiliated with FORCE. YOU OF ALL PEOPLE should understand that I don't have to agree with the term and I can voice that as strongly as I want, but of course you wouldn't. You are supposed to show support to people of all kinds. People shouldn't have to agree with everything you do in order to be supported and backed by you. I would be embarrassed if I were you of even involving yourself. At least Sue was professional and respectful. You, though, have a lot to still learn especially if you're supposed to represent ALL OF THE BRCA COMMUNITY. I am appalled by you and can't believe your nerve. I can't believe you actually admitted you were the vice president of FORCE. You should be ashamed.
Karen,
ReplyDeleteIt's apparent very few care. That just goes to show how narrow-minded you are, especially if I am. And if nobody does care then you are just as judgmental.
I am truly disappointed. I have been following this blog from the beginning and it is clear that some of you have not.
ReplyDeleteHave any of you had one of those moments where you felt so strongly about something you just said everything you were thinking and didn't look back? You meant everything you said, yet it came out in just a way that it seemed a whole lot more extreme? We've all had these moments.
For those of you who don't follow this blog as much, I would like to point out that it is here to be supportive and educational. It is a place for people who are BRCA positive to band together and support each other, not turn on each other. Yes, some harsh statements (and may I point out that the author is not the only one making harsh statements…) may have been made but they were not made to offend. They were made to show a passion. It bothers me when people don't know how to support each other. How much more effective would it have been if, instead of jumping down the author's throat, the commentors had explained why they feel the term previvor fit them? I understand you felt hurt by the words and statements written but can you honestly say they were written to offend you? Personally, I know they were written to express what the author was feeling right then and there.
Instead of taking offense and arguing, let's use this blog for what it's meant for, support. We all know we could use it.
Oh and Barbara,
ReplyDeleteJust something I thought i might add because I feel this is important. There was never a FORCE support group in Rhode Island until recently and when it was asked why you big shots hadn't started one for Rhode Island you responded and said that it was too small of a state. WHAT THE HELL IS THAT SUPPOSED TO MEAN? Too small of a state? The support group Woman and Infants hospital put together for us drew in about 30 people affected by BRCA. What is that not enough affected people for you and your group for one state? And the only reason why one was actually started was because two women, one of which I am very close to, volunteered because they said they didn't mind helping us out. That's something you should be extremely ashamed of. Too small of a state? What kind of garbage is that?
Thank you Jenny. I really appreciate that more than you even know. You truly just made my day. You made me smile. That is enough for me to say that if it was my time today I would be satisfied. Thank you for that. I appreciate your understanding.
ReplyDeleteThis a collaborative comment from me a daughter of a breast cancer survivor, and my mom THE SURVIVOR standing next to me right now. how dare all of you attack brcapositive for her opinion. aren't all of us supposed to be able to express our own opinions without the fear of being attacked? and here she is being attacked for voicing hers. I am a survivor and i am a daughter of one and we have no problem with her being offended by the term previvor. yes, if you have the genetic mutation you are at a much higher risk of many cancers. HOWEVER, if you choose not to call yourself a "previvor" what right do other people have to put you down for your choice of terms. we are all supposed to be in this together regardless of how we view our genetic mutations. we are sickened by a group of people who are supposed to support each other acting like immature ingrates when someone doesn't agree with one of their terms. as far as FORCE i applaud sue, however FORCE has become like high school if you are not in the "in crowd" you do NOT get the support that you are looking for. so BRCAPositive you say whatever you feel and whatever makes this unfortunate genetic situation better for you. we are behind you 100% and for all of those people who don't agree, life is about differing opinions.
ReplyDeleteBRCA Positive - I'm a VP yes and I think it would be completely dishonest for me not to disclose that. I should add though that I am a full time volunteer - I don't take a penny for my work with FORCE. Like you -- I am BRCA+ and have lost many family members to breast and ovarian cancer.
ReplyDeleteI am posting only to correct the information about FORCE in the event other people reading this thread get an incorrect view of what FORCE is.
I didn't comment on the previvor discussion because I agree - you have a total right to feel what you feel. Please read my post again. I said absolutely nothing about you not having a right to your feelings. I don't advocate for any positions around HBOC other than the stated positions on the FORCE website.
Even on second reading I don't see anything at all disrepectful but I do apologize if something I said made you feel like I was being disrespectful or was in any way negating your feelings.
As far as Rhode Island being too small of a state - we set up groups in ANY area that has enough people to sustain a group. The size of a state has absolutely nothing to do with it. There are far larger states than Rhode Island that don't have groups.
But yes - you are right - we do only set up groups when someone steps forward. Our groups are completely run by volunteers
If we don't have volunteers in an area - there's unfortunately no other way for us to set up the group. Once the two wonderful volunteers from RI stepped forward - we were thrilled to set up the group.
Again - I'm sorry if there was something in my post that led you to feel I was saying you were not entitled to your opinions.
I just feel like it is not your place to be commenting on this and this is not a place for you to advertise your group and if that is all you are trying to do then please do not visit my blog.
ReplyDeleteU.S constitution First Amendment: freedom of speech.
ReplyDeleteso stop all the bullshit. i feel like I’m in high school again. Reading about different people trying to be cooler than the other person by calling them names. its ok that you all might have different feelings on the topic but we are all old enough and have grown up enough to not be calling other people that are in the same situation that we are a hurt full name. A famous quote from Martin Luther King, Jr. "
We must learn to live together as brothers or perish together as fools" YOU ALL HAVE THE SAME PROBLEM BEING MEAN TO EACHOTHER AND HURTING EACHOTHERS FEELINGS ARENT GONNA MAKE IT BETTER FOR YOU.
so everyone grow up and live together you all have one life to live and if you want to be none as a the blogging asshole that died from beast cancer so be it but go to a different blog this one is for support this isn’t FORCE we care about the support or us the people all they care about is the drama that life brings and not the happiness and care of us the people with this problem. if anyone would like to write anything bad about my post go ahead you are wasting your time I’m a strong person and people that shit on me puts a smile on my face it makes me stronger. if u really want support and not just the label FORCE can give you stick with it there is hope there is rumor that there will be a group that is made that is for people that are living there daily life to the fullest and don’t need a label to get them by.
I am not what happened to me,
ReplyDeleteI am what I choose to become.
Carl Jung
I agree with BRCA positive. I am BRCA positive as well as my three siblings. Both of my parents were BRCA positive. My dad passed away from Pancreatic Cancer and my mom passed away from Breast and Ovarian Cancer. I am 38 years old. I had an oophorectomy in '07 and I am having a PBM in the Fall of this year. I do not and will not consider myself a "previvor". I will not be surviving anything because I am lucky enough to be able to prevent Breast and Ovarian Cancer. I don't feel sorry for myself that I am BRCA positive...I feel lucky that I know that I am.
ReplyDeleteBRCApositive, you've taken so much flack here... and that's terrible.
ReplyDeleteI have metastatic breast cancer and I have a very strongly negative visceral reaction to the term "previvor". I wish FORCE had never made up that word. I wish they'd used something a little less inflammatory.
And I wish that there was an alternative to FORCE.
And I agree with you Chantelle. Maybe someday I'll be able to create that alternative.
ReplyDeleteAdmittedly, I stopped reading comments perhaps halfway though, so I don't know if what I'm about to say has been covered. But here it is...I don't believe being BRCA positive is what makes one a previvor. I believe it is saving your own life by taking preventative measures that makes one a previvor. I am a previvor. A proud one. And I don't compare myself to cancer survivors, because I didn't have cancer. But that's why we're not called survivors.
ReplyDeleteLike a woman mentioned earlier, some survivors believe it is more difficult to be a previvor. Or at least see the honest struggle. My sister was diagnosed at 27 & she has told me that she did what she had to do to live. And she was a freaking superhero throughout it all. The crazy thing to me, is that she feels similarly about me. She is beyond proud that I made the decision to have a prophylactic bilateral mastectomy & reconstructive surgery. And we will both remove our ovaries by age 35, if we haven't gotten ovarian cancer by then (I'm having a bit of a scare right now). I mean...we're both doing what we have to do in order to live. And we respect each other greatly for what we each went through/are continuing to go through.
I guess my point is this...being BRCA positive doesn't make you a previvor. Facing the terror & having the guts to save your own life...that's what makes someone a previvor. And I'm a proud one.
I'm 21 years old and just underwent my first needle biopsy. It's a terrible process and I can't imagine having to go through it every 6 months - which is why I'm having a preventative mastectomy and reconstruction next week. There are a LOT of worse things in life than being BRCA positive. But that doesn't mean that this is easy. My mom survived cancer and I'd never claim this requires half the strength she had. But it does require strength and the name provides a way for us to identify with one another. Be respectful.
ReplyDeleteI am a brain cancer survivor, career cancer fighter, and have a much better word than previvor for this blogger: awesome.
ReplyDeleteThis young woman was faced with the very difficult decision of getting tested, and when she found out she was positive she decided to start this blog and raise awareness.
Cancer is an emotional issue if you have it, a loved one has it, or you know you may get it.
People deal with cancer differently (support groups, writing) and use different words to describe themselves, but even if we don't use these same ways or words, there is one thing I hope everyone remembers: we are all in this fight together - or we should be.
This blogger decided to take her situation and create a place for anyone dealing with BRCA - you should be thankful for that even if you don't agree with everything she says.
If more people dealt with difficult life situations the way she did, the world would be a better place.
Wow! I am just coming across this blog now, and after months of depression, suicidal tendencies, chronic pain, panic disorder and disgust from a prophylactic bilateral mastectomy I think you are obviously a narcissist, with severe mental health problems and I truly feel sorry for you. I can only assume that you deeply regret publishing these thoughts publicly. I sincerely hope you get the help you need.
ReplyDelete