Tuesday, September 07, 2010

Words

Language is a funny thing. I think of it as fixed but it's fluid, with new words and meanings being added to our vocabulary all the time. Even popular phrases come and go. People give "150%" to find something with the "wow factor".

One word that was made up only a few years ago that I strongly dislike is "previvor". According to the people who made it up, "cancer previvor" means "survivor of a predisposition to cancer" although nowadays the "cancer" is assumed and they're called just "previvors". Apparently people who've been diagnosed with the genes linked to ovarian and breast cancer want a label other than "unaffected carrier", which apparently is what the medical community uses.

I have a strongly negative visceral reaction to the word "previvor". I get that people want a label, but this one implies that they're going to develop a disease - which is by no means certain - and that they're the only ones who are genetically predisposed to develop it - which they can't know, because researchers have only found two genes so far that are connected to breast and ovarian cancer. Apparently I'm not the only person who's had cancer (or "survived it") who reacts the same way I do to this phrase.

An organization called FORCE (the ones who made up the word) is trying to get legislation passed (H Res#1522) so that the US recognizes a Hereditary Breast and Ovarian Cancer Week as the last week of September, with the Wednesday of that week to be designated "Previvor Day". Apparently this designation is critical in the fight against hereditary cancer. They talk as though this is a fight for all hereditary cancers, but it's only for the few genes for breast and ovarian cancer.

Honestly, there are more diseases out there than hereditary breast and ovarian cancer and researches don't know all of the genes that define this hereditary cancer. And what about other hereditary cancers? Why should they be excluded? What makes these genes more important and deserving of notice than any other?

I'm deeply offended by the idea of this proposed legislation - especially the idea of a "Previvor Day" and hope it won't pass. There is nothing critical about designating the week or a special day; honestly, the calendar doesn't need the extra clutter.

If I was in the US I'd write my House Representative and speak out against this legislation and especially against a "Previvor day".

39 comments:

Kimberly said...

This article may interest you. http://www.energypsyched.com/gene-expression/EP_and_Gene_Expression5.pdf It's about how energy psychology can turn genes on and off. I think that previvor is a horrifying addition to the English language. In my little world, it is my belief that you could actually make people sick with a word like that.

Allison said...

yeesh, people have predispositions for all sorts of things! I think identifying genes and so forth is great if it can help lead to treatments or preventions, but talk about an unnecessary weight to dump on someone ... imagine if we knew all the possible genetic markers! Here's all the diseases you *might* (but probably won't) get! UGH!

I think applying this information to an individual who is NOT sick is ridiculous. It seems like such an American attitude to treat people as potentially sick like that. They really do have a focus on illness and medication rather than on health and preventative activities. I find the attitude to health here in the Netherlands is so much more laid back and well, sane!

PussDaddy said...

I have never heard of this word before.

PussDaddy

sloth003 said...

yuck.

that word is awful. and it seems like a bunch of attention whores making mountains out of molehills. "wah wah wah pay attention to me i have a weird gene or two" get over yourselves and spend your time and money on actual folks with cancer or survivors.

wow. seems i have an opinion on this.

Robin said...

It sounds like a group of people want their turn in a spotlight. Offensive.

Anonymous said...

Force is a GREAT message board for people with a DEADLY gene called the BRCA gene. Ignorant people that have posted may want to read up on it before offering their much not-needed opinion.

Chantelle said...

Speaking of ignorance.... BRCA is NOT a deadly gene. Having it does NOT guarantee that the person will develop breast or ovarian cancer.

If FORCE is teaching anyone otherwise, it is not a great place no matter how much anyone likes its message board.

Anonymous said...

i am so proud HBOC WEEK PASSED today!!! Yes, as a previvor, I couldnt be any happier. Especially in knowing i did all i could to PREVENT myself from being another victim from this devastating hereditary disease of breast cancer. I just recently had a risk reducing mastectomy...a priceless gift denied to six of my family members. Sorry u all dont get it!!! Ignorance wont get u too far, but empowerment has prevailed today. Woo hoo!!

Anonymous said...

Most BRCA1 and BRCA2 carriers learned of their status after losing family member after family member to breast and/or ovarian cancer. The risk conferred by a BRCA1 or 2 mutation is not just theoretical--the death toll in BRCA1/2 families is often jaw-dropping. I am in optimal health and I still have an 85% chance of getting breast cancer. (If the weather report says there's an 85% chance of rain, do you pack an umbrella or do you do nothing and just hope for sunshine?)

My family members (the ones who haven't died from breast cancer) assure me that cancer sucks and they would have loved to have the opportunity I have to prevent it. Identifying BRCA1 and 2 carriers is a very important piece in preventing and ultimately curing breast cancer. I don't care if I'm called a "previvor," an "unaffected carrier," or something else altogether, and quite frankly, I don't see what's so controversial about any of this.

Anonymous said...

FORCE rocks!!! To those who are not educated about hereditary breast/ovarian cancers, I will not respond to ignorance as another poster just acknowledged as well. U are clueless and un-informed since you do not even know how HIGH the risk for breast cancer is when you have a positive mutation. Is 85% too low??? Let me think about it long enuff... gosh, I have about a 15% chance of NOT getting breast cancer. Let me think about it again. NOPE, I wanna be a previvor and not a survivor. We must all choose whats best for ourselves, but to make a mockery of hereditary cancer or to belittle those of us who, as previvors, will do whatever it takes to live without getting an aggressive cancer or have it found at a late stage, despite all the diagnostic screenings....well,again its all about increasing awareness and the representatives of our government agreed today big time!

Chantelle said...

It is a sad, sad, day when the US government passes any bill that promotes "previvors". There is more hype here than realism.

It just goes to show that lobbying, emotionalism, and ignorance are more important than scientific facts and reason, at least in the US.

Anonymous said...

When someone told you, you have cancer, did you believe them? It is scientific knowlegde cancer exisits, did you see your cancer? Do you have to see a genetic mutation to see that it exists? Do you see the air you breathe? When multiple Dr's recommend to me my risks are so high that they recommend a double mastectomy because and it is the same Dr that treated my dying brca+ mother I don't call that hype. Did you do what your Dr recommended? You are probably here because of it.

Anonymous said...

I have a BRCA mutation and found out about it before I got cancer. A number of my relatives were not so lucky. Yes, I acted on this information, even though I was NOT SICK. I decided to have a double mastectomy without cancer. Before the surgery, my risk for breast cancer was so high that it was all but certain. I am offended that anyone would label this as ridiculous, or making a mountain out of a molehill.

I consider this information a gift from God that may very well have saved my life, not an "unnecessary weight."

To the poster who wrote "wah wah wah, I have a weird gene or two" - please do some reading about BRCA before you mock us like that. And by the way, everybody has the two BRCA genes. If you don't understand that remark, you might want to educate yourself.

As for the "get over yourselves" and "people wanting their turn in the spotlight" remarks -- the point is to bring attention to the issue and SAVE LIVES! And what makes you think that Previvors don't spend our time and money on "actual folks with cancer." We have lost mothers, sisters, grandmothers, aunts, and cousins to breast and ovarian cancer.

Why are all of you so bitter toward people who have learned something about their DNA and chosen to act on it? How does that hurt you?

Anonymous said...

Go on the FORCE website and look at the message boards. These are real people, and most of them have had cancer. The "previvors" are the exception.

They're not a bunch of crybabies trying to call attention to themselves. They seem to me like some good people who have been dealt a rotten hand. Haven't we all, in one way or another?

Anonymous said...

Hi Chantelle, first, I want to say thank you for leaving up comments that don’t agree with you. I appreciate your willingness for a discussion on the topic.

Frankly, when I was diagnosed with a mutation in the BRCA 1 gene, I was rather put off by the word “previvor” as it did seem a little dramatic. However then I realized it was a lot shorter than “someone with a significant predisposition to have breast or ovarian cancer due to a genetic defect”, and sort of embraced it. As someone who has to decide if I want to wait until I get cancer (up to an 87% chance in my case) to get my breasts and ovaries removed, or remove them as a preventative measure and dodge the bullet, this is not easy to deal with. I am trying to avoid what cancer survivors have gone through. I have tried to avoid my sisters fate-death because her cancer was so aggressive at age 32 that she couldn’t be treated and leaving her 3 kids without a mother. I am not trying to take away anything from cancer survivors, and frankly, I don’t want any attention.

My main goal in supporting HR 1522 was in getting the word about HBOC out there. To help educate people that you can a HUGE genetic disposition to getting breast and ovarian cancer that you need to keep an eye on. Ovarian cancer has less than a 50% 5 year survival rate, and I have a 40% chance of getting it. Quick diagnosis is key to survivial-but how you can you get quick diagnosis on something if they aren't checking you for it?

I don’t think other diseases should be excluded-I think that they need recognition too. Education is always key in fighting to cure diseases. However, should HBOC wait to have recognition until someone in those other groups organizes their own recognition?

Jill said...

Here's another way to look at it: Knowledge of BRCA-1 and -2 status saves millions of $$$ every year--Don't believe me, look it up on Pubmed. The cost-effectiveness of prophylactic surgery vs. cancer treatment in the % of people with gene defects is well proven. All we want is for people who may not even know their genetic status is to have access to this information, and the right to decide if they wish to seek treatment. It has nothing to do with "my genetic status is sadder than yours."

Chantelle said...

Of course I'm willing to leave these posts up because I believe in open discussion. It is hard to take y'all seriously when you don't put your names to your posts. Posting as "anonymous" doesn't count for much.

For those that don't think I understand what it's like to be afraid you'll get cancer, you're wrong. I was diagnosed with stage 2b er/pr+ infiltrating ductal carcinoma with 3/7 positive lymph nodes when I was 31. 5 1/2 years later the cancer metastastized to my sternum. Unless I get hit by a truck or die in an airplane crash, I WILL die of breast cancer.

I understand the risks associated with a mutation of the BRCA1/2 genes. My main point is that having a mutation doesn't *automatically* carry a death sentence. It increases risk which means that extra vigilance is needed, but it doesn't automatically mean the person will die of breast cancer (or ovarian cancer).

That said, I do understand how hard it is to lose multiple family members to cancer and having a deep-seated feeling that you'll die the same way. I imagine that families with lots of heart disease or diabetes feel the same way.... which is why people think those who call themselves previvors are just calling the waaaahmbulance.

I also understand the fear. I know how terrifying it is to face test results and to be afraid that something's happening. And I understand that people with the known genetic mutations are in a unique category, without any understanding and support from the general population. And I love the idea that people in that position have others to turn to via a message board. I understand this more than most because I get lots of support from online support groups.

I just wish that there was an organization other than FORCE that provided knowledge and support. It bothers me that so many of the arguments people are making here are based on emotion rather than facts which to me is fear-mongering.

Anonymous said...

If being called a previvor helps save one persons life by genetic testing or early detection, then the FORCE organization has been successful. As for being anonymous, your forum allows it. I wish you the best of luck with your cancer, with or without a mutation, cancer sucks. I hope you enjoy a long and happy cancer free life from here on. You have traveled the road I never want to be on.
Hugs to you,
A FORCE SISTER

Chantelle said...

FORCE isn't needed to do early detection or genetic testing because if someone has a lot of family members with cancer, that person will be monitored by their doctor and possibly given the genetic testing. And if someone doesn't have a family history of cancer, the genetic testing is unnecessary.

I guess I am allowing you to be anonymous but what do you have to hide? Why not post your name and stand behind your words? Just because you can do something doesn't mean that you should or that it's the right thing to do.

To be clear, when a cancer has metastasized, as mine has, it means that the cancer has spread beyond the breast. At this point the cancer is considered a terminal disease because the cancer will kill the person who has it. My days will never be free of cancer.

Anonymous said...

Chantelle,

My cousin had breast cancer mets to her bones and lung in her mid thirties- she went to MD Anderson on a clinical trial...and is still alive today at age 62. So, to be clear, it is not always terminal. Like you stated about the mutation, it isn't 100%...to be clear, and scientific. Although you know scientifically and statistically, yet unemotionally, breast cancer mets and testing positive for a mutation...neither one ain't good.

Were you in debate in high school? Who cares who we are, we are probably in different countries, thank God. Lighten up Francis.

Chantelle said...

I have disabled anonymous comments on this blog for the time being.

People living with metastatic breast cancer for longer than 10 years are very, very rare. Not to mention lucky.

Splash said...

Chantelle,

I'm grateful for FORCE. The other support organizations and groups that are available in my area are for women with cancer, like you and like my cousin. I'm healthy. And I couldn't relate. I was shocked when they sent me to an Oncologist (and the Oncologist was not very interesting in spending time with me -- not sick yet). I needed someone to talk to who was in the same boat as me. I hope you can understand the need for that.

I for one loathe the "pink ribbon" stuff, but to each her own.

Chantelle said...

Comments are still welcome here as long as they're not anonymous.

I deleted a "comment deleted by author" comment earlier. I haven't, as far as I know, deleted anyone else's comments but if I have inadvertently deleted someone's comment, I'm very sorry. Please post it again.

I hate (as much as I hate anything) the word "previvor". I think that it diminishes what it means to survive something. It's a word that people react to. It's hard not to think of people who consider themselves "previvors" as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word "previvor" seems to say that the two genetic mutations are equally as fatal or severe.

I don't hate FORCE. It provides a place for people who do have the BRCA1/2 mutations to get support and understanding and as I've said, I like that.

I don't like FORCE in part because it made up the word "previvor". As well, it seems like the people that are defending the organization have an exaggerated view of what it means to have the BRCA1/2 mutation, which indicates that FORCE is not doing a great job of educating people with the mutation.

I wish that there was another organization out there as well as FORCE that provided balance and a different point of view.

And I do hate (again, as much as I hate anything) pink ribbon month. IMO, it places too much focus on breast cancer - which isn't the most fatal cancer in the world. There are other, more serious, less treatable cancers that could benefit from some of that exposure and some of all that research money.

Having written all that, I'm wondering if part of my reaction against "previvor" and FORCE is an expression of my dislike of the breast cancer juggernaut. I'll have to think on that.

Melanie said...

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Melanie said...

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Melanie said...

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Melanie said...

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Melanie said...

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Chantelle said...

I'm sorry, everyone, but changing to non-anonymous comments seems to have messed something up so that your comments aren't showing. I get a notification of the comments but they don't show up. I don't know why this is happening.

So we're back to allowing anonymous comments so that your comments show up.

Chantelle said...

Melanie left this comment earlier:

You are right in assuming that there's a discussion on the FORCE message boards about this blog. Earlier this week, I stumbled on your blog when I was looking for information about the proceedings in Congress. I posted a link with the comment "A different perspective on HBOC Week and Previvor Day." I guess that makes me the can-of-worms opener.

It's obvious from your comments that this is an emotional issue for you. In your initial post, you say that you have a visceral reaction to the word, and later you say that you hate it. “Visceral” is an especially strong word, so I assume that you want your readers to understand that, for you, this is an issue for which reason does not prevail. You write, “It's hard not to think of people who consider themselves ‘previvors’ as wanting the attention that people who have serious genetic mutations or serious illnesses get. Having a genetic mutation that causes a predisposition to breast or ovarian cancer isn't nearly as severe or fatal as having the genetic mutation that causes cystic fibrosis (for example). But the word ‘previvor’ seems to say that the two genetic mutations are equally as fatal or severe.”

In fact, the word has a simple, unambiguous definition which doesn't suggest or imply anything. You've drawn all sorts of conclusions about previvors, as if we all had the same ideas, opinions, and agendas. We share a biological phenomenon and its inherent risks. Otherwise, we are as diverse as any other group, comprising different races, religions, ages, nationalities, political opinions -- you name it.

It’s unreasonable to suggest that all previvors want to call attention to themselves, as if we were all narcissists. Unfortunately, there probably are some previvors who exploit the term because they enjoy the attention. Others discuss the issue openly, not for selfish reasons, but because they believe that it might help others. There are also previvors who take great care to protect their privacy and confidentiality, and who would never consider going public. The rest of us are somewhere in between, all along the continuum.

I respect and celebrate your right to publish your opinions about the word "previvor," or anything else. Just please realize that you've created a stereotype and applied it to a lot of people that you don't know. I find that offensive.

Anonymous said...

You said:

"FORCE isn't needed to do early detection or genetic testing because if someone has a lot of family members with cancer, that person will be monitored by their doctor and possibly given the genetic testing. And if someone doesn't have a family history of cancer, the genetic testing is unnecessary."

Oh HOW I wish you were right. If you were - maybe my Mom would still be alive. She had the family history and nothing was done. More to the point, it was only in an a casual discussion with a new doctor did the possiblity that I carried the mutation came up.

I live in NYC - had what I thought were really, really good doctors and not one ever mentioned it to me.

And even if every single doctor was aware and referred appropriate people for genetic counseling and testing - it wouldn't make FORCE obsolete. Genetic cancers react differently to treatments and research is needed specifically for this community. Then there's the impact of having multiple cancers in a family (not for all BRCA women but for some) and then the additional impact of knowing you can pass this onto a child.

I'm sorry you don't like previvor - but I wish you wouldn't paint an organization with a broad brush just because of a single word.

tweekerbeeker said...

Chantelle, I am so sorry that you have to face this dread disease, and at such a young age. My mother and baby sister also faced it at a young age. If you could have avoided it, and the treatments, wouldn't you have done it? I'm sure you would have.
Please understand that being BRCA+ does not in itself=previvor. Our founder at FORCE was diagnosed with cancer in her early 30's. She founded FORCE b/c those with a mutation have different issues to struggle with-not more important-just different. For example, a brca+ woman with cancer has a higher risk of recurrence, a higher risk of developing cancer in the other breast,and increased risk for many other cancers, as well as the possibility of passing this gene on to her(or his) children.
A previvor has an 85% risk of developing cancer, compared to the average woman's risk of about 12%. We prefer the term "previvor" in part b/c we are anything but "unaffected"! In fact, "unaffected carrier" is an outdated term. Most doctors now use "previvor"
I wish my baby sister had had the chance to be tested. And I would never have been tested myself if she had not died from cancer, joining my mother and several generations of men and women in my family.

A previvor is one who is predisposed to cancer(as you rightly said) but may or may not get it.All we wantr is a way to get the word out-so people know it is important to test in certain circumstances. Dr.s RECOMMEND mastectomy and oophorectomy for us-we sure don't jump at the chance to have these surgeries.
Please rethink this, Chantelle. If someone had told you that you could avoid cancer altogether--yes, I'm sure you would.
On a bright note to end, research being done on the brca genes is helping scientists to understand cancer better, so maybe someday...

Bethany said...

Frankly, I am surprised that anyone who has been diagnosed with cancer of any kind would have a problem with a word. Obviously, you have struggled through treatment, and cancer will always be a part of your life. Cancer has always been a part of my life too. I have never been told that I have cancer, but out of 10 women in the 3 generations above mine, only 2 have NOT had breast cancer and most of them have had early onset, premenopausal, aggressive, metastatic FATAL cancer. Statistically, BRCA mutation related cancers are MORE AGGRESSIVE than non gene-related cancers. They are VERY often not found before they have become metastatic and terminal. Those of us who carry a genetic predisposition to developing cancer deserve to have a word to describe us, it is as warranted as your title of survivor. I've watched enough family members die of these genetically linked cancers that I am absolutely going to do my best to avoid ever hearing those words. I completely understand your difficulty with pink ribbons, which are everywhere, and for a survivor might be a reminder of what you have been through. Sometimes we define that feeling as being "pinked out". Please remember that seeing a pink ribbon has likely reminded millions of women worldwide to schedule their screening mammogram, make an appointment for their clinical breast exam, perform their own monthly self exam. FORCE is an invaluable community that has never EVER had any other community challenge or oppose their work. Perhaps the reason why there are no other forums with other viewpoints is due to the fact that FORCE represents EVERYONE. Previvors, survivors, family members, even generally curious people. There are people who are adamantly opposed to preventative surgery and choose close surveillance on the boards, as well as those who have had preventative surgeries. NOBODY is ever sent away. For so many of us, it is the ONLY outlet for what is a very frightening, serious, personal experience. Why would anyone want to deny any group with ANY condition, opinion, position, a voice? That is very selfish. If you do not like the term, don't use it. If you don't want to visit FORCE, don't visit. Give us our place, it doesn't affect you. As you surely know, the legislation passed UNANIMOUSLY this week. I am so thankful to live in the United States of America, where physicians, scientists, researchers continue aggressively search for a cure for this dreaded disease. I am proud to wear the title PREVIVOR. Bethany

Bethany said...

Frankly, I am surprised that anyone who has been diagnosed with cancer of any kind would have a problem with a word. Obviously, you have struggled through treatment, and cancer will always be a part of your life. Cancer has always been a part of my life too. I have never been told that I have cancer, but out of 10 women in the 3 generations above mine, only 2 have NOT had breast cancer and most of them have had early onset, premenopausal, aggressive, metastatic FATAL cancer. Statistically, BRCA mutation related cancers are MORE AGGRESSIVE than non gene-related cancers. They are VERY often not found before they have become metastatic and terminal. Those of us who carry a genetic predisposition to developing cancer deserve to have a word to describe us, it is as warranted as your title of survivor. I've watched enough family members die of these genetically linked cancers that I am absolutely going to do my best to avoid ever hearing those words. I completely understand your difficulty with pink ribbons, which are everywhere, and for a survivor might be a reminder of what you have been through. Sometimes we define that feeling as being "pinked out". Please remember that seeing a pink ribbon has likely reminded millions of women worldwide to schedule their screening mammogram, make an appointment for their clinical breast exam, perform their own monthly self exam. FORCE is an invaluable community that has never EVER had any other community challenge or oppose their work. Perhaps the reason why there are no other forums with other viewpoints is due to the fact that FORCE represents EVERYONE. Previvors, survivors, family members, even generally curious people. There are people who are adamantly opposed to preventative surgery and choose close surveillance on the boards, as well as those who have had preventative surgeries. NOBODY is ever sent away. For so many of us, it is the ONLY outlet for what is a very frightening, serious, personal experience. Why would anyone want to deny any group with ANY condition, opinion, position, a voice? That is very selfish. If you do not like the term, don't use it. If you don't want to visit FORCE, don't visit. Give us our place, it doesn't affect you. As you surely know, the legislation passed UNANIMOUSLY this week. I am so thankful to live in the United States of America, where physicians, scientists, researchers continue aggressively search for a cure for this dreaded disease. I am proud to wear the title PREVIVOR. Bethany

Bethany said...

Frankly, I am surprised that anyone who has been diagnosed with cancer of any kind would have a problem with a word. Obviously, you have struggled through treatment, and cancer will always be a part of your life. Cancer has always been a part of my life too. I have never been told that I have cancer, but out of 10 women in the 3 generations above mine, only 2 have NOT had breast cancer and most of them have had early onset, premenopausal, aggressive, metastatic FATAL cancer. Statistically, BRCA mutation related cancers are MORE AGGRESSIVE than non gene-related cancers. They are VERY often not found before they have become metastatic and terminal. Those of us who carry a genetic predisposition to developing cancer deserve to have a word to describe us, it is as warranted as your title of survivor. I've watched enough family members die of these genetically linked cancers that I am absolutely going to do my best to avoid ever hearing those words. I completely understand your difficulty with pink ribbons, which are everywhere, and for a survivor might be a reminder of what you have been through. Sometimes we define that feeling as being "pinked out". Please remember that seeing a pink ribbon has likely reminded millions of women worldwide to schedule their screening mammogram, make an appointment for their clinical breast exam, perform their own monthly self exam. FORCE is an invaluable community that has never EVER had any other community challenge or oppose their work. Perhaps the reason why there are no other forums with other viewpoints is due to the fact that FORCE represents EVERYONE. Previvors, survivors, family members, even generally curious people. There are people who are adamantly opposed to preventative surgery and choose close surveillance on the boards, as well as those who have had preventative surgeries. NOBODY is ever sent away. For so many of us, it is the ONLY outlet for what is a very frightening, serious, personal experience. Why would anyone want to deny any group with ANY condition, opinion, position, a voice? That is very selfish. If you do not like the term, don't use it. If you don't want to visit FORCE, don't visit. Give us our place, it doesn't affect you. As you surely know, the legislation passed UNANIMOUSLY this week. I am so thankful to live in the United States of America, where physicians, scientists, researchers continue aggressively search for a cure for this dreaded disease. I am proud to wear the title PREVIVOR. Bethany

Chantelle said...

tweekerbeeker left this comment, which didn't show up:
Chantelle, I am so sorry that you have to face this dread disease, and at such a young age. My mother and baby sister also faced it at a young age. If you could have avoided it, and the treatments, wouldn't you have done it? I'm sure you would have.
Please understand that being BRCA+ does not in itself=previvor. Our founder at FORCE was diagnosed with cancer in her early 30's. She founded FORCE b/c those with a mutation have different issues to struggle with-not more important-just different. For example, a brca+ woman with cancer has a higher risk of recurrence, a higher risk of developing cancer in the other breast,and increased risk for many other cancers, as well as the possibility of passing this gene on to her(or his) children.
A previvor has an 85% risk of developing cancer, compared to the average woman's risk of about 12%. We prefer the term "previvor" in part b/c we are anything but "unaffected"! In fact, "unaffected carrier" is an outdated term. Most doctors now use "previvor"
I wish my baby sister had had the chance to be tested. And I would never have been tested myself if she had not died from cancer, joining my mother and several generations of men and women in my family.

A previvor is one who is predisposed to cancer(as you rightly said) but may or may not get it.All we wantr is a way to get the word out-so people know it is important to test in certain circumstances. Dr.s RECOMMEND mastectomy and oophorectomy for us-we sure don't jump at the chance to have these surgeries.
Please rethink this, Chantelle. If someone had told you that you could avoid cancer altogether--yes, I'm sure you would.
On a bright note to end, research being done on the brca genes is helping scientists to understand cancer better, so maybe someday...

Chantelle said...

About the word "previvor"... I think that people who've had cancer are the ones most likely to respond negatively to that word. The word is a play on "survivor" and while people with the BRCA1/2 mutations are more likely to develop cancer, they aren't surviving that cancer before they get it.

Moreover, using the word "previvor" equates the experience of dealing with a genetic mutation that might lead to breast or ovarian cancer with going through treatments for those cancers. They are not the same. To say that they're surviving knowing about the mutation diminishes what it means to be a "survivor" (in the same way that giving a prize to everyone in a contest diminishes the value of winning or the pain of losing). So using "previvor" in this context cheapens and diminishes what it means to really survive something.

Language and words that are important because they define how people think about themselves and how other people think of them. I'm not the only person who dislikes the word "previvor". "previvor" carries with it baggage that gets in the way of any good FORCE might do. If you all really don't care what word or phrase is used to describe those with the BRCA1/2 mutation, then why not use "unaffected carrier" or "BRCA carrier" or something else that doesn't include "survivor"?

Mica Harris said...

I am a nurse and the daughter of a mutant. I shared your blog today at work with some oncologists and also a general surgeon specializing in breast cancer patients. They were actually speachless at first and then quite verbal about your ignorance and lack of education. Please refrain from further embarrassing your self and do some reserach on genetic mutations.

Lisa F said...

The word Previvor and the organization FORCE helped save my life because I learned information online that my doctors never told me. If my doctors had thought clearly about the concept of Previvor, I could have avoided breast cancer. People have commented above, asking why you would want to know about cancer ahead of time? There is one very important reason why: Women who have genetic testing and learn their risk ahead of time have options to find their cancer early and even to avoid it altogether. One in ten women who are destined for breast or ovarian cancer carry a gene that can give them advance warning, and then they have medical choices to help them avoid cancer. That's why they want to know.

"Previvor" is a powerful concept that needs a word and a day so men and women at extremely high risk for cancer -- and their doctors -- will begin to pay notice it. Right now, too many don't know. Women and men are getting cancer who never needed to have this disease -- and I was one of them.

My family history of ovarian cancer indicated I should have had genetic testing long before I did, but I didn't know this. I learned this information on the web by chance, and signed up at a Direct-to-Consumer online genetic testing service (DNA Direct). When I learned I carry a BRCA1 mutation, and after educating myself from information on the FORCE website, I had an MRI I never would have had otherwise. Only weeks after my normal mammogram I learned I already had breast cancer -- a very aggressive triple negative cancer similar to 85% of the women with BRCA1 mutations. I often wonder what would have happened if I had never known I was a "Previvor," and had never known to pursue high-risk screening after my normal mammogram?