Comments for The Oransky Journal

Comment on Happy birthday, Dad: My eulogy for Stanley Oransky, May 16, 1941-August 27, 2010 by cczivko

cczivko — Fri, 17 May 2013 01:05:46 +0000

Lovely and moving. Ivan, your life honors his name. May you move from strength to strength.

Comment on Happy birthday, Dad: My eulogy for Stanley Oransky, May 16, 1941-August 27, 2010 by Michele

Michele — Fri, 09 Nov 2012 23:06:48 +0000

Wow! I grew up just a few houses away from you. I lived on Liberty Circle. Our parents socialized a bit. Your dad was wonderful to my father (Jerry Horwitz) . He helped my Dad so much when, so many, many years ago my father first got ill. My parents moved to Florida in August 2006 and my father passed away in October of that year. Your parents came to the graveside service. I was too emotionally wrought to say anything that day and don’t keep up with New City much. I thought about your father recently and stumbled onto this. Jeez, it is years too late but I want your family to know how much we (the Horwitz family) appreciated your Dad.

Comment on Transsexual woman castrates herself: What one person did when insurance wouldn’t pay by m

Sun, 21 Oct 2012 05:19:31 +0000

Here’s a true story for you… I live near central USA. So it’s hard to find someone that can do the procedure of removing the testicles from my body. So, I actually attempted to cut mine off. It was December 25, 2004 and I had rational thought to proceed with what I was doing. I had all the items to do it with: disinfecting, cutting, burning, sewing, etc.. Except that I chose not to use any type of numbing. That is how I messed up my castration. I got as far as holding one my problems( testicle) in my hand and could not cut it due to too much pain. I didn’t realize the pain from the tubes that held on to the testicles had just as, if not more sensitivity than the testicles themselves. By then it was too late to try to numb it so I decided to rethink my situation. I decided that I couldn’t cut it slow. The tubes would have to be pinched by hemostats and then have a swift and direct cut to the part with the testes to detach them. Then have to be burned and cauterized to stop the bleeding. But I never got that far. I only had a surgical blade and it was not big enough for the swift cut that I presumed I needed. So I stuck my problem back in the scrotum and stitched it back together. I decided to try again tomorrow. However; I didn’t think about the swelling and didn’t want to further the chance of infection so I halted the castration part and let it heal and try again in the future. I had swelling for about 2 and a half months along with a leakage of fluid draining from between the stitches for an additional month. I had videotaped the procedure but I erased it later that week from fear that someone find it and post it somewhere.
But if you think that that failing attempt has stopped me, you are wrong. I plan to finish what I started. The next time I do it I will have help and more equipment for the procedure. I already have one friend willing to help me, and maybe a second one. I do plan to record and document it again, but this time for more reasons than just my own.

Comment on September 11, 2001: A day in my life, 11 years later by Lesley Oransky

Lesley Oransky — Thu, 13 Sep 2012 04:08:32 +0000

Ivan,
Our school was in lock down mode. A fellow educator came in to ask where you lived in the city. I called Dad to learn that you had been in touch with him and you were safe and hoping to volunteer. At three, I rode a bus full of elementary school students to their homes and walked each one into their house to make sure someone was there to meet them. Families were grateful that their children were safe. In our school we had a parent who had been in the first tower to go down. We all rallied around that family and supported them for the remainder of the year. I feel the pain of loss and I am so proud that you posted your thoughts. Keep this going.

Comment on September 11, 2001: A day in my life, 11 years later by Barbara Glickstein

Barbara Glickstein — Wed, 12 Sep 2012 14:35:16 +0000

Reading this brought me back to 9/11 and some shared experiences – living downtown, seeing the towers collapse and heading to Beth Israel Medical Center to assist in helping victims. Instead, I found lines of people waiting to donate blood and the ER bay quiet. We live on Broadway and friends who worked downtown came to our home with colleagues to shower and call home to family on our landline. So many deep moments of humanity, sadness and connections. I usually ride downtown to the site on my bike every year just to stand for a moment of silence. This year I couldn’t. This post served as my personal moment. Thank you Ivan.

Comment on Pre-games, previvors, and pre-death: My TEDMED talk on what medicine can learn from Moneyball by 84% chance of being voted off the island

84% chance of being voted off the island — Sat, 16 Jun 2012 22:16:33 +0000

I sincerely hope that no one you love gets voted “off the island” as so many in my family have. What a cruel way to get a laugh. Shame on you. Take issue with definitions all you want, but don’t make jokes about a very real condition. I didn’t sign up for this BRCA mutation, but thanks to FORCE I am finding ways to deal with it.

Comment on What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED by BRACHA - living with a high risk of hereditary breast and ovarian cancer

BRACHA - living with a high risk of hereditary breast and ovarian cancer — Sat, 16 Jun 2012 20:34:45 +0000

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.

Comment on What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED by Michelle

Michelle — Sat, 16 Jun 2012 11:36:56 +0000

You know the ironic thing is- most people associate the term Previvor with the BRCA mutation and nothing else. I’m an outreach coordinator for a local FORCE group and I asked them to change the verbiage since it talked about BRCA so much and I didn’t want anyone to feel excluded. Now it seems that the opposite could be happening. Maybe going back to the old form of the definition would be better.

Comment on What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED by Laura

Laura — Sat, 16 Jun 2012 02:06:45 +0000

Dear Dr. Oransky,
In response to the outcry from the hereditary cancer community regarding your crass and careless handling of our community’s word “previvor” you have done little more than focus on the semantics of three words in the definition intended to provide inclusion for a diverse group of women who suffer similar fates to women with BRCA mutations. The intention of FORCE in this matter is clear and your point is duly noted.
Moving this discussion along to your place in all of this, I would like to provide a thorough analysis of your choice of words in referring to FORCE and the hereditary cancer community it represents.
“If you survive until the end of my talk, you’ll be a previvor. Now, I made up “pre-death”…. I didn’t make up previvor. Previvor is what a certain cancer advocacy group would like everybody who just has a risk factor, who hasn’t actually had that cancer to call themselves. You’re a previvor. We had HBO here this morning, I Mark Barnett is in the audience, I’d like to suggest a reality TV show called Previvor. If you develop a disease, you’re off the island.
First of all, in discussing previvor, you note you are referring to FORCE’s term. You ignore the genuine population to whom this term genuinely applies and infer that this organization, in some disingenuous way is recruiting previvors (rather than providing support which is the true intent). In turn, you make farce of the term previvor, which to many of my sisters in the hereditary cancer community has been a lifeline and an identity.
Further, you go on to say, “We have advocacy groups, like the one who came up with previvor, who want to make more and more people feel they are at risk, or might have a condition so that they can raise more funds and raise visability, etc.” Again you infer that FORCE has some sinister motive in providing an inclusive definition of the term previvor. At this point, it has been pointed out many times that the motivation is truly the utterly benign intent to provide support to diverse women with similar issues.
To quote you a final time, “There are no bad people, there are just bad incentives.” I personally believe that had you actually researched the support and advocacy group known as FORCE, you may have chosen to address this term with a bit more respect and sensitivity. As a good person, your hesitance to provide any type of apology causes me to believe you must be bound by bad incentives. We do live in a litigious society and I am sorry that causes you to withhold a due apology in addition to ordering unnecessary tests.
I urge you to spend as much time responding to your own choice of words as you have on the three words “other predisposing factors”. The hereditary cancer community struggles constantly with misunderstanding regarding the difficult choices we must make regarding diagnostics and prevention. This community would really like to hear from you regarding three different words and those are “I am sorry”.

Comment on What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED by A genetic counselor

A genetic counselor — Fri, 15 Jun 2012 22:21:11 +0000

This “debate” certainly has changed since the controversial TEDMED lecture. That lecture was entitled “Pre-games, previvors, and pre-death: My TEDMED talk on what medicine can learn from Moneyball”, which ends with the statement “…in our healthcare system, we need to figure out is that really a good pitch or should we let it go by and not swing at everything”. It really does seem like the main point is that the preventative surgeries offered to BRCA positive women is overtreatment. It was never mentioned during the lecture that, for some individuals who are labeled previvors, the term is appropriate. It was also never mentioned that, given the cancer risks that many of these women face, preventative care is an excellent use of medical resources.

With all due respect to Dr. Oransky, it appears as though the backlash that this talk created necessitated a change in your position. I believe this is why the “debate” has morphed into a dissection of five words. In fact, the “lesson” BRCA positive women could learn from Moneyball seems to be all but forgotten, except of course by the BRCA positive women who have watched the talk. Now it appears as though there is a “debate” about semantics with a very narrow focus on five words.

These five words allow the inclusion of women with Li-Fraumeni syndrome, Cowden syndrome, Peutz-Jeghers syndrome, hereditary diffuse gastric cancer syndrome (just for a start), women with a history of LCIS, ADH, a previous history of radiation exposure to the chest wall, a strong family history of early onset breast cancer without a known gene mutation, a strong family history of early onset breast cancer with an uninformative negative BRCA testing result who have no living family member with breast cancer for testing, a mother who took DES during pregnancy, etc. This list is incomplete and exactly why the words “or some other predisposing factor” are necessary. It may seem this opens the door for “all women” to be considered high risk, but really this just opens the door for any women who is at high risk for any reason and does so without making the definition paragraphs longer and missing women who should be included.

Previvors have something in common, their high risk for breast cancer and the choice to take action prior to being diagnosed. This choice is not an easy one and should not be taken lightly. FORCE has given these ladies a label, it gives them a common bond no matter the reason behind the preventative surgery. No one person should aim to divide these women by nit-picking the hidden meaning behind “some other predisposing factor”. I would suggest FORCE not make any changes to the current definition and instead, work to enlighten healthcare professionals and the general public about the multitude of other “predisposing factors” that put a woman at risk.

I would also propose that we agree to drop this debate about these five words, congratulate FORCE and medical community for practicing what is probably the best example of preventative medicine since the advent of the vaccination, and move on to a real example of overdiagnosis and overtreatment.