This is now a Three Part Post. So.. the fragmented stuff.... Additions.... I'm scattered but I'm usually more careful with my writing... Having said all of that...
Part ONE:
Of course I have to comment. With props to so many. I will name those who I’ve been able to identify. Please identify yourself if quoted and not credited.
Part ONE:
Of course I have to comment. With props to so many. I will name those who I’ve been able to identify. Please identify yourself if quoted and not credited.
Angelina Jolie.
We have the same
chest. So do many of you. Tissue expanders followed by implants. And in AJ's case, followed by media whores and haters and .....
I'm throwing this to Lexie who left a message on Facebook that was shared with me. Pretty much tells the whole story:
Woman Makes Personal Decision About Her Health, Suddenly
Everyone on the Internet is a Doctor: News at 11
Perhaps the best write up
was in the NewYorker by Rebecca Mead. If you only
click one thing, make it that one.
Really, read Angelina’s own story which appeared in the Op Ed section of the NY Times. As if there is a person in the western world who hasn't already seen the story.
Now, my pointed comments and some observations because yes, we really DO need some additional commentary about AJ.
- Angelina Jolie made an informed medical choice with her docs based upon her individual circumstances. It's NO ONE's business to judge.
- When someone makes such a difficult decision, as I see it, you have two choices: Support them or SHUT up.
- AJ was BRCA+ which, when combined with other risk factors carried an 87% risk she might develop breast cancer and a 50% chance of might develop ovarian cancer.
- Her mom died at age 56 of ovarian cancer. She was diagnosed in her 40's.
- I’m sure plenty are saying, "Why speak at all?" C'mon. Don't ask the dumb questions. You don't THINK this would have gotten leaked?
- “It was a bold and public step for a woman well known for her privacy.” CNN Entertainment.
- See prior comment and adding: How long do you think it would be before some tabloid journalist might have gotten his/her hands on this story? Then what? Can you see the headlines at the check out aisle in the grocery store? Me too…
- Kudos to Angelina Jolie for being brave enough to tell her story in her own words before someone embellished the story w/half truths. And downright lies.
- And, before everyone gets hysterical about getting BRCA tested, read abt importance of genetic counseling. MSKCC has an excellent genetic counseling service. Yes, I do know first hand.
- And I can hear this, “So why didn’t she get her ovaries removed, too?” For those who are asking with sincerity, the recommendation made by my doctor is to remove at 40 years old. She is 37. For those who are being a bit bitchy with their question…. Just go away.
- I'm learning that there are people that had no idea what a mastectomy is which is a bit frightening. Twitter. And the twidiots.
- The cost of the test is quite high but it IS covered by insurance when it is medically indicated.
- The cost of the test COULD be drastically reduced if there is competition in the arena. The Supreme Court already heard the arguments. A decision is expected "later this year." I think it will be next month if my sources are to be believed. It would have been great if the decision was ready NOW. BRCA mutations are the buzzword of the moment.
- If I offer kudos to AJ for making such a difficult decision, off the top of my head I can think of at least six people who made the same choice for the same reason. They didn't get op-ed's but they are MY heroes... heroes of epic proportions... You know who you are.
Some links to read with good information:
And a few other places but I'm going to follow her advice and get to bed early for a change!
Yesterday was about Pink Bats. If you are bored with the Angie thing... please do read what happened on Mother's Day on the baseball diamond.
Tomorrow.... it's about Kites.... and two very special people.....
Oh... and the Kites and the Bats.... both stories involve bullies.
Come to think of it, AJ's BRCA gene involves a bit of bullying too. I had to ask people to Leave My Genes Alone.
I'm always asking nicely and I'm getting tired of being pushed around. It's time to PUSH BACK.
Post Script..... An add on.... the bonus round.....
Post Script..... An add on.... the bonus round.....
Part TWO:
Now that we have The Angie Gene, The Angie Factor, The Angie Frenzy, I added this information to my original post.....
Now that we have The Angie Gene, The Angie Factor, The Angie Frenzy, I added this information to my original post.....
I'd hoped this would be a teaching moment. How simple minded I was. It's Media Mania. Soundbites, headlines and a big ball of confusion. Maybe it would have been better if this was kept quiet?? My head is aching.
Allow me to share the man who sat down with me to review my "pedigree" for two hours BEFORE a decision was made as to whether or not I was going to be tested. Bear in mind, I already KNEW I had cancer. Here's the thing. That test wasn't about me. It was about my daughter. If I tested positive, would my daughter want to know, would I want to tell her, would she want to be tested. This is why a genetic counselor is essential.
Listen online or download the podcast. This is the best explanation you will find ANYWHERE on genetics, risk reducing surgery, etc etc etc....It's Dr. Kenneth Offit, Chief of Clinical Genetics at MSKCC. Nothing but facts.
And for the record... there is a BIG difference between proven risk reducing surgery in very high risk patients BEFORE there is a cancer diagnosis. In the case of AJ, her risk of developing breast cancer was 87% (according to every report I've seen) when all factors were taken into consideration. Surgical intervention reduced that risk to single digits.
My own prophylactic mastectomy AFTER my cancer diagnosis may have afforded me a significant risk reduction of developing a second new breast cancer because of my very strong family situation. It did NOT however, do much in the way of preventing a recurrence.
A nod must be given to the fact that there are intangibles that should not be discounted. Hyper-vigilant monitoring, being called back for every suspicious image--having a cancer that by nature is sneaky (lobular) and unlike ductal MAY be hiding in the other breast which is not typical of most breast cancer--many things come into play when decisions are made and it's not up to any one person to question or critique an informed choice between a woman and her doctor(s).
These are important distinctions. These are three different scenarios yet they are all being lumped together and that is a tremendous dissemination of inaccurate information. It's causing lots of confusion and muddying the waters.
The End of the Addition...
And lastly, Part THREE which contains much of the same info but was a Facebook update...
The Beginning of what I hope to be my last word...
Here's a Facebook update I wrote:
My own prophylactic mastectomy AFTER my cancer diagnosis may have afforded me a significant risk reduction of developing a second new breast cancer because of my very strong family situation. It did NOT however, do much in the way of preventing a recurrence.
A nod must be given to the fact that there are intangibles that should not be discounted. Hyper-vigilant monitoring, being called back for every suspicious image--having a cancer that by nature is sneaky (lobular) and unlike ductal MAY be hiding in the other breast which is not typical of most breast cancer--many things come into play when decisions are made and it's not up to any one person to question or critique an informed choice between a woman and her doctor(s).
These are important distinctions. These are three different scenarios yet they are all being lumped together and that is a tremendous dissemination of inaccurate information. It's causing lots of confusion and muddying the waters.
The End of the Addition...
And lastly, Part THREE which contains much of the same info but was a Facebook update...
The Beginning of what I hope to be my last word...
Here's a Facebook update I wrote:
Cliffs Notes .... The Doctor T Report (for the four of you who know Dr. T)
I'm on Angelina burnout BUT I've read a ton of incorrect info.... Bearing in mind I am NOT a doctor, just someone who reads too much, some info which I believe to be factual:
1-We ALL have "the gene" -- guys too.
2-We inherit the genes, one from our mother, one from our father.
3-If either of your parents has a faulty gene you may (or may not) inherit this faulty gene.
4-Both parents do NOT have to have a faulty gene in order for your gene to be mutated. For example, to get blue eyes, you need to inherit the "blue eye" gene from both mom and dad. Not so with the BRCA gene. (That's kind of important since I read a piece today by a woman with a BRCA mutation who is "not worried about her child because dad's gene is okay") which leads directly to......
5-GENETIC COUNSELING. Anyone who feels they are at risk of having a BRCA mutation should first meet with a genetic counselor which leads to.....
6-Check the LIST before you hunt down a genetic counselor. I suspect they are a very busy bunch of people these days. There is a very good check list on MSK website. Most of the population does NOT fit the guidelines for meeting with a genetic counselor.....
http://www.mskcc.org/blog/
7-Which in turn means, if you don't need genetic counseling, you likely don't need the test.
8-The only reliable test result is finding a mutation that is known to increase the risk of developing breast and ovarian cancer. Notice the words..."increase the risk" ... Not... "getting cancer" .....
9-Having the test come back negative may mean there is a mutation that has not yet been identified. There are other possible test results but in the interest of not adding further confusion, let's stick with positive (which is bad) or negative (which is useless).
10-Understand that the test results are not only going to affect you. Picture this. A woman recovering from surgery is sobbing her eyes out. Why? Not from the surgery or the pain or those drains... she was on the verge of hysteria because she didn't know how (OR IF) she was going to tell her young adult daughters that she did the genetic test and was found to be BRCA positive for a mutation known to elevate risk.
11-Presume you don't have cancer and you have positive results.... it makes perfect sense to consider risk reducing surgeries. Some women choose screening which could be anywhere from 2 to 4 times a year, others choose surgery so that a 60% risk (that's the norm, the celeb in the midst of this had additional things to raise her risk-her mom's ovarian cancer diagnosed in her 40's amp'd it up for AJ) is taken down to single digits. There's scientific evidence to back these numbers.
12-Still with me?? Those surgeries should not be confused with the decision some women make AFTER they have already been diagnosed with cancer. There's no evidence to prove that removing healthy breasts will prevent a recurrence. It may, however, depending upon all of the other risk factors, afford a significant reduction in the chance of developing a second breast cancer.
13-The more important surgery? Ovaries..... there is absolutely no effective screening method for ovarian cancer at this point in time. This was made crystal clear to me by..... Welll.... here... have a listen
14-Listen to Ken Offit's videos, too. Very informative. Every question you have and even ones you never thought of... asked and answered...
http://www.mskcc.org/videos/playlist/new-genomics-susceptibility-pinpointing-your-risk
I'm on Angelina burnout BUT I've read a ton of incorrect info.... Bearing in mind I am NOT a doctor, just someone who reads too much, some info which I believe to be factual:
1-We ALL have "the gene" -- guys too.
2-We inherit the genes, one from our mother, one from our father.
3-If either of your parents has a faulty gene you may (or may not) inherit this faulty gene.
4-Both parents do NOT have to have a faulty gene in order for your gene to be mutated. For example, to get blue eyes, you need to inherit the "blue eye" gene from both mom and dad. Not so with the BRCA gene. (That's kind of important since I read a piece today by a woman with a BRCA mutation who is "not worried about her child because dad's gene is okay") which leads directly to......
5-GENETIC COUNSELING. Anyone who feels they are at risk of having a BRCA mutation should first meet with a genetic counselor which leads to.....
6-Check the LIST before you hunt down a genetic counselor. I suspect they are a very busy bunch of people these days. There is a very good check list on MSK website. Most of the population does NOT fit the guidelines for meeting with a genetic counselor.....
http://www.mskcc.org/blog/
7-Which in turn means, if you don't need genetic counseling, you likely don't need the test.
8-The only reliable test result is finding a mutation that is known to increase the risk of developing breast and ovarian cancer. Notice the words..."increase the risk" ... Not... "getting cancer" .....
9-Having the test come back negative may mean there is a mutation that has not yet been identified. There are other possible test results but in the interest of not adding further confusion, let's stick with positive (which is bad) or negative (which is useless).
10-Understand that the test results are not only going to affect you. Picture this. A woman recovering from surgery is sobbing her eyes out. Why? Not from the surgery or the pain or those drains... she was on the verge of hysteria because she didn't know how (OR IF) she was going to tell her young adult daughters that she did the genetic test and was found to be BRCA positive for a mutation known to elevate risk.
11-Presume you don't have cancer and you have positive results.... it makes perfect sense to consider risk reducing surgeries. Some women choose screening which could be anywhere from 2 to 4 times a year, others choose surgery so that a 60% risk (that's the norm, the celeb in the midst of this had additional things to raise her risk-her mom's ovarian cancer diagnosed in her 40's amp'd it up for AJ) is taken down to single digits. There's scientific evidence to back these numbers.
12-Still with me?? Those surgeries should not be confused with the decision some women make AFTER they have already been diagnosed with cancer. There's no evidence to prove that removing healthy breasts will prevent a recurrence. It may, however, depending upon all of the other risk factors, afford a significant reduction in the chance of developing a second breast cancer.
13-The more important surgery? Ovaries..... there is absolutely no effective screening method for ovarian cancer at this point in time. This was made crystal clear to me by..... Welll.... here... have a listen
14-Listen to Ken Offit's videos, too. Very informative. Every question you have and even ones you never thought of... asked and answered...
http://www.mskcc.org/videos/playlist/new-genomics-susceptibility-pinpointing-your-risk
My reaction to Ms. Jolie's news was one of anger. I've been processing that emotive response for a day now. Part of that process has been to read her own words, as well as supportive blogs like yours. The bottom line is that it was a personal decision and nobody's business. But Ms. Jolie is a celebrity, so it's everyone's business. I can say this to her: "Thank you for sharing the reasons for your decision." As for my anger, I guess I will continue to evaluate the source, and maybe write something for my own blog.
ReplyDeleteFirst Heather, THANK YOU for the very respectful way in which you left this comment. I mean that.
DeleteI have very strong opinions about celebrity health stories. In the interest of not veering of course, which is ALWAYS a danger with my wordy chemobrain, I'll stick to just this issue and why I supported the release of the story with a few concerns I may address in a future post.
The biggee:
Gene patents are a big problem for me. I blogged about it here and I did another piece on BC Action blog. They are a plaintiff in the case that is being decided in the Supreme Court. People don't understand that "having the gene" isn't the same as having a mutated gene. We all have the gene and hearing that question, "Did you have the gene?" drives me nuts. I want to say, "Yes, I have the gene. In fact, I have both of them AND I got them from both my mother and my father." Then, I want to add, "So do you." ......But like **you** have done here, I choose diplomacy.
In the case of Angelina Jolie with SUCH a high profile, I looked at this as a real teaching opportunity. (Again, maybe another more expanded post) I just WISH that more reporters would have connected the dots to the issue of gene ownership, even as an anecdotal ending to the splashy headline.
I do believe this story would have hit the tabloids and there would have been a media frenzy filled with all sorts of sordid untruths. On some level, although it may bug me on behalf of the women who do not have supportive partners and initially I felt like that was rubbing salt into their wounds, the mention of her relationship sets aside round two for the tabloids. "BP leaving AJ because her boobs are fake" .....
Having a sense that this would have gotten out, I wholly support her telling the story in her own words. Beyond that, I don't think any one of us has a right to dispense medical opinions about the choice she made. I did sit with a genetic counselor and I had to make similar choices based on ambiguous information. I understand the difficulty in the decision making process. I agonized so perhaps I am a bit more empathetic? I haven't realized analyzed my reaction.
I will say that the real heroes to me are those every day women who made the same choice as AJ whose names are not splashed across the news. I have expressed to many.... I already had a cancer diagnosis and my surgical choices were made because I HAD to do something to treat a disease. The previvors (of which my daughter is one by virtue of a really lousy family tree), those who bravely take matters into their own hands, altering their bodies to reduce their risk... they are, in my book, heroes.
This one was personal for me on so many levels.....
Thank you, again, Heather... for sharing your feelings and for doing so in way that speaks to your compassion as a both woman and a person. I treasure your honesty.
AM
What I am finding frustrating in all of this is the across the board praise for being proactive. If I'd done the test earlier (before I got cancer), and received my negative result (which I got during chemo), I would have taken no action. So when cancer did happen, I would've been even more confused and angry, protesting "but I got the BRCA test, it was negative" much like I did with the false negative mammogram. How much you want to bet, given the misinformation flying around the media now, that people are looking at us BRCA negatives with strong family histories and wondering why we didn't do something proactive too. No offense to everyone with BRCA+, but the mutation is still not exactly common. And I still hate that the only preventative measure is the slash portion of Dr. Love's description of treatment as slash-poison-burn. At the end of it all, I still have cancer, so do lots of other people, no matter how much we think we can control it. Another ta-ta bites the dust.
ReplyDeleteCC...
DeleteLike you I have a "strong ++ f/h" That was written on my lab results by the radiologist who found abnormal cells. That was before I had a cancer diagnosis, it was before my mom's 2nd dx and subsequent metastasis, it was before both of my sisters were affected.
After seeing the way this story is being spun, I'm weary and I feel like I should do something to dispel the myths. Dr. Love did an interview on Huff Po (video):
http://live.huffingtonpost.com/r/segment/angelina-jolie-writess-nyt-op-ed-and-lays-down-the-gauntlet-against-brca/518c1f5e02a7600f1b0002b1
And Salon has an excellent piece: http://www.salon.com/2013/05/15/angelina_jolie_meet_nate_silver/
This "teaching moment" has turned into a wildfire and we are going to have to work to contain it....
I too have some mixed emotions about the news stories regarding Angelina Jolie. But as far as celebrities sharing health information goes, I give kudos to Jolie for the way in which she did it and the frankness she used. I think her approach is doing more good than harm, which isn't always the case. I appreciate that she clearly states "I do not feel any less of a woman." I am comfortable with the decisions I made when I was diagnosed, including the decision not to have reconstruction after my mastectomies. I put it this way: "I am not less of a woman, just a woman less her breasts." Jolie was faced with difficult choices and did what she felt was best for her and her family. I wish all women felt empowered to do just that. Thanks AnneMarie!
ReplyDeleteLisa...
DeleteI'm exhausted from reading and listening to the talking heads....
It's turning into a feeding frenzy anyway....
Can you imagine if this had hit the tabloids on TOP of what is going on now???
Highly recommend the Salon link and of course, listening to Dr. Love...
Comprehensive post as always! I don't know Angelina Jolie nor am I ever likely to meet her. But I would like to thank her for going public with her decision as it has and will help so many. Just in the last 3 days, patients of mine who are BRCA positive have expressed that they are grateful to her for sharing her story and for taking some of the flack for the decision she made - my patients have all said that it will make it easier for them as they won't have to do as much explaining, especially to the many who remain ignorant.
ReplyDeleteAnd that's precisely why I supported her decision to share her story. Now, to make sure to control the pandemonium around who needs genetic counseling and who should be tested!!!
DeleteAs for the surgery... no matter who decides to do this.... We really must mind our own business and just support those who make this decision. It's a heart wrenching choice. Last thing any of us needs is to have it questioned.
We questioned ourselves enough....
Great piece, AnneMarie.
ReplyDeleteI am blown away by the awful comments people made about Angelina as a person and about her personal decision. Comedians will comment and I exclude them--hell, that's what they do. But the vitriol and hatred. I was taken aback by that level of toxic spew. My lord!
I think that while we have media mania now, the teaching moment(s) will emerge over time though they may be more subtle. As I commented over on Marie's Weekly Roundup, this is a story that has all atoms colliding: discussions of diagnosis, treatment, access and class, gene patents, etc.
My friend Crystal underwent a bilateral mastectomy for DCIS. It was a gut wrenching decision but she noted how odd it is that breast cancer seems to be the only cancer where the decisions of the woman who has it are questioned, Monday-morning-quarterbacked to death, and judged. And it's usually not even behind her back BUT TO HER FACE! Andnot only that, but people have the temerity to tell the person to their face that they're tired of hearing about her cancer. AS if cancer wasn't bad enough women have to deal with arrows of judgement coming from all corners.
I'm with you ALL THE WAY on this. I'm generally with you all the way on everything because you always speak the truth.
DeleteI hate what happens to all the Crystal's in the world. It's disgraceful.... and for the love of God.... the comments seem to always be from other women which pisses me off even further.... Should we not be supporting each other?
There is a maelstrom of topics to discuss and they are getting confounded by the fact that too much is swirling at the same time. Yes. All atoms colliding....
Love ya, Scorchy...
SPECTACULAR post. Indeed. So many things are making my ears ring loud. "Risk reducing surgeries"....whew.
ReplyDeleteThanks, Heather....
DeleteSo much to discuss. Too much lost in the frenzy....
Important that we all keep talking and sharing information..... ACCURATE info.. or we turn to the docs who give so freely of themselves....
Love and Hugs,
AM
Love, love, love this post, AnneMarie!
ReplyDeleteI get so fed up with people who judge. Angelina Jolie's decision was her decision, and the flurry of criticism was unwarranted. She is a celebrity, but most of all -- as the general public is apt to forget -- she is human.
Thanks for an enlightening post. I also love your Cliff Notes.
Love,
Beth