4 Comments
June 12, 2012
Kate says:
Sue -
Thanks as always for representing our community so passionately and eloquently!
Kate
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June 12, 2012
Carol says:
AMEN SISTER!
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June 12, 2012
says:
Double amen from Lori. BTW in my web search about this man I found that Ivan asked his tweet followers to suggest words and perhaps only then did he learn the word 'previvor'. I pasted it here:
Ivan Oransky @ivanoransky
Help me out: Looking for uses of the term "pre-[disease]" eg "pre-diabetes," "pre-hypertension," etc. I have a list, want more. Thanks!
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Michelle N. Meyer
@MichelleNMeyer
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@ivanoransky You mean like "previvor" (usually wrt cancer)? See, e.g., https://www.facingourrisk.org/FORCE_communit …. Also similar: various uses of "subclinical."
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June 12, 2012
Lori A. says:
I found Ivans tweets!
Ivan Oransky @ivanoransky
Help me out: Looking for uses of the term "pre-[disease]" eg "pre-diabetes," "pre-hypertension," etc. I have a list, want more. Thanks!
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Michelle N. Meyer
@MichelleNMeyer
Follow
@ivanoransky You mean like "previvor" (usually wrt cancer)? See, e.g., https://www.facingourrisk.org/FORCE_communit …. Also similar: various uses of "subclinical."
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June 12, 2012
Carol says:
PREsumptuous, PREconceived, PREACHiness, PREtentious, PREordained,PREinformed, PREcritical, PREfocused, PREsuming, PREACHifies, PREclude, PREjudge, PREhistoric,.What more is there to say? I'm a breast cancer survivor and a 2 time ovarian cancer survivor. Maybe he'd like to tell the 3 children of my late sister who died of breast and ovarian cancer that they shouldn't be concerned about being PREvivors. He is PREposterous!
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June 12, 2012
says:
Sue-
I watched the presentation and also read your blog. I agree with you that he absolutely went to far when talking about the word "previvor". He has no idea what women and men go through when faced with hereditary cancer, what their families go through, and the worry it causes. Comparing acne to cancer is like comparing apples to oranges; it's just completely inaccurate. A person with acne does not have to go through chemo treatments, radiation, nausea, diarrhea, losing hair or losing their life. He was way out of line comparing acne to cancer.
I do agree that sometimes things are over treated, but not with hereditary cancer. Great blog!
Julie post
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June 12, 2012
Suzanne Citere says:
Excellent reply Sue!
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June 12, 2012
facingourrisk says:
Excellent comment on his blog: http://theoranskyjournal.wordpress.com/2012/06/05/pre-games-previvors-and-pre-death-my-tedmed-talk-on-what-medicine-can-learn-from-moneyball/
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June 12, 2012
Carey says:
Thank you Sue your reply was perfect! He is exactly the kind of doctor consumers need to be afraid of. He's the kind of doctor that caused me not to be diagnosed until cancer was stage 4. Too be sarcastic "Oh she's perfectly healthy, that cyst in her breast is nothing , or her family history of cancer means nothing. She's fine."
Sue please never stop fighting for us! I love you!
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June 12, 2012
says:
I just listened to the webcast. Wow love, love, love your response. I also want to send you a big warm heartfelt hug for all that you do. because you have empowered so many women and families with knowledge and truth. My family is now walking around in the dark and knowledge and truth are powerful in making informed decision. GOD bless you.
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June 12, 2012
ivanoransky says:
Thanks for all of the feedback and discussion. I've responded here: http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/
I look forward to more conversation.
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June 12, 2012
facingourrisk says:
Dear Dr. Oransky,
I would like to clarify that although I do disagree with your use of the word previvor in your talk, my personal objection to the content of your talk has more to do with 1) your tone which struck me as dismissing and making light of people facing inherited risk of cancer 2) the generalization about over-treating pre-conditions which omits factual information about some serious conditions for which interventions could be life-saving 3) what in my opinion seems to be an implication that our organization uses the word irresponsibly to raise money and make more people think they are at risk who may not be and 4) what in my opinion seems to be an implication that our organization contributes to the overmedicalization of preconditions. However, if I'm understanding your latest blog correctly, it appears that your objection is to the definition of the term itself, not to the work of our organization, why we coined it, or the community it identifies. Unfortunately that didn't come across so well in your presentation so I appreciate your clarification.
To your point about updating the definition of the term: at the time that we coined it, we did so to address and respond to a specific need expressed by members of our community. We are open to and might consider serious and thoughtful suggestions for reframing of the term that would still define and empower the community for whom it was coined. Having said that, outside of your talk, I have not personally seen the term misapplied in a way that inappropriately inflates people's concerns about diseases that they may or may not ever contract. Perhaps you could send us some examples of where the term itself has been misused and caused harm and we can determine if there would be benefit to tightening the definition so that it will not be misapplied.
Respectfully,
Sue Friedman, DVM
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June 12, 2012
Lee Asbell says:
http://leeasbell.wordpress.com/2012/06/12/brca-genes-dr-ivan-oransky-previvors-and-common-sense/
A link to my thoughts on this topic.
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June 12, 2012
Previvors have powerful knowledge « Ellyn Davidson says:
[...] Oransky, I hope you will learn more about hereditary cancer mutations, about previvors and about this wonderful organization that continues to save lives. Share [...]
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June 12, 2012
Lee Asbell says:
Sue,
Now that Dr. Oranksy has made a public reply I hope we will hear more from you on this topic. Many thanks for your continued good work.
Cheers,
Lee
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June 12, 2012
Robin says:
Thank you, Sue, for your well-articulated points and your compassion.
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June 12, 2012
says:
Sue,
Thank you for your levelheaded response to Oransky's ill-conceived and—frankly—inflammatory talk.
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June 12, 2012
Lori A. says:
Dr. Ivan:
I am a 'previvor' and an MD (a retired psychiatrist who started out in ob/gyn). My husband is a research (MD) scientist and has taught me much about the unique barriers to research and progress in American healthcare. Without going into too much detail please hear me out. Please do not lump "previvors" with preclinical acne or even pre-diabetics. We are a different lot entirely. My sister was dxd age 51 with 1cm ER+ breast cancer, no meds 'needed' aside from some post opTamoxifen for five years. She elected to have her contralateral breast removed at time of the cancer surgery (mastectomy and node resection) as she somehow thought: why worry about cancer in my other breast? She travelled to see some of the nations top oncologists although her home doctor was mentor to most all of them. None wanted to give her chemo with such a small tumor. She only found out about the BRCA status AFTER her surgery (1996).Thirteen years later she felt a small a supraclvicular node (same cancer but now ER negative :( and was found to have mediastinal mets which were kept at bay somewhat with Xeloda but then, 2.5 years ago she got a rare syndrome: leptomeningial carcinomatosis (huge word for mets to her brain lining) when she was unable to walk or balance, and she died within a few months. In retrospect we are finding that BRCA mutants fare better if they are given neoadjuvant chemo. In other words, our cancers behave differently! So had this info been around for my sister perhaps, just perhaps, she might still be alive today. I had elective prophylactic mastectomies and oophorectomies long before the word 'previvor' was around, and trust me, no surgeon was jumping to do my surgery!! The word was coined so that we have a way to communicate easily. Survivors are ones who have had cancer, previvors have the gene (or in some case if no gene has been found or the proband never was tested, then they have no way to tell if they inherited a mutation. it also includes those who have lobular carcinoma in situ with family history of breast cancer, as they seem to fit in this risk group as well. I do agree with Sue, that maybe as time goes on we can tighten the term somewhat, or make subset terms.....but I have not seen it misused and in fact it is not used medically but more just in our groups so we understand one another. I just saw my gyn today for my annual exam and he was very thankful to learn we have a local chapter of FORCE as he just saw two women in their 30's with BRCA mutations and is glad they have somewhere to go for support, as it it is a lonely confusing road indeed. BTW I agree with most everything else you said in your talk. American healthcare is a mess and we waste a lot of money on tests that may not be needed...and I applaud you helping communicate with lay public and doctors. Just try to understand that our word, unlike the others you referred to, was NOT coined by doctors..but rather by people groping for understanding! thanks Lori Adelson MD
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June 12, 2012
says:
Sue, wonderful response and thank you for all your do for the BRCA community. We are blessed to have you as our leader!
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June 13, 2012
facingourrisk says:
Dear Friends, here is a link to a letter signed by members of FORCE's Board of Directors, Advisory Board, and staff in reply to Dr. Oransky's presentation.
https://www.facingourrisk.org/advocacy/documents/2012-dr-oransky-response-website.pdf
Note that two additional signatures were added since sending this to Dr. Oransky.
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June 13, 2012
Gail Escobar says:
Excellent response to a medical "professional" who is clueless!!!
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June 14, 2012
JanetheWriter says:
Sue, thank you for your response to this doctor's remarks. You've inspired me to write my own response (blog style) to Dr. Oransky: http://janethewriterwrites.blogspot.com/2012/06/my-three-names.html.
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June 14, 2012
says:
Sue, this is a beautiful response that captures the expereinces of previvors in such and honest manner. As a researcher in this field, I have seen first had the benefits of women being aware of thier risks. Thank you for all that you and FORCE do to improve the lives of women everywhere!
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June 14, 2012
crunchster says:
Dear Sue,
Thank you for being the face and heart of this organization. Your patience and forbearance in trying to rebut this unwarranted attack bespeak a level of class that Dr. Orlansky would do well to emulate. Unfortunately, he seems to choose defensiveness rather than candor.
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June 14, 2012
Sonja says:
I am a 4 time survivor...2x breast, 2x ovarian, with the first diagnosis at age 24. I carry the BRAC1 gene. I have 2 daughters, ages 22 and 27. They both carry the gene. After a year and a half of seeing genetic counselors, many doctors, much debate, discussion and lots of prayer they both made their own decisions. 2 and a half weeks ago they both had mastectomies and the beginning of reconstruction at Stanford on the same day, with the same teams of doctors. They are recovering beautifully and with plenty of pride!
To Dr. Olansky...I only have to say SHAME ON YOU!! I find your thoughts arrogant, glib and uninformed. I wonder if you would have the courage to sit down with my two BRAVE and COURAGEOUS PREVIVOR daughters face to face and share your thoughts with them? I think not! My girls spent many years witnessing the difficulties of facing cancer...they decided to take the power OVER cancer! They took their chances of developing breast ca down from 87% to 1%...they will address the issue of their 60% chance of ovarian ca in the near future. For your sake, I only hope you never have to face this issue in your family...your thoughts on this matter will be a very bitter pill to swallow.
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June 16, 2012
BRACHA - living with a high risk of hereditary breast and ovarian cancer says:
Dr. Oransky,in his video mocked and humiliated all previvors throughout the World who have been helped, educated and inspired by FORCE.
In his video he laughed not only at the word previvor but also insulted FORCE who he says raise money from previvors.
Whilst I have no respect for anyone speaking about things they DO NOT understand I would like to point out that FORCE has only ever sponsored the International previvor community and never had any aim of “making money”.
Since the Previvor community has pointed out Dr Oransky’s mockery of both previvors and of FORCE he has come up with a new idea that he has a “problem with the deffinition” of the word previvor. If that was the truth then we would have heard it in his video. Did we? NO!
Instead, we heard in his tone and in his words complete abuse and mockery of previvors and of FORCE.
He is trying to get out of what he said by changing the issue. Typical journalistic tactics, that can not be respected by intelligent and educated people.
Dr Oransky – YOU made a HUGE mistake out of ignorance.
YOU owe the Global Previvor Community an apology.
YOU owe Dr Friedman an apology.
YOU owe FORCE an apology.
After all three apologies then maybe you will be able to regain a small amount of self respect.
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July 4, 2012
says:
Sue,
I have one word for your responses-brilliant! Thank you for all you do.
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