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I had the colon cancer equivalent genetic test (I was DX'ed with CC last July) for Lynch Syndrome. It was a cheek swab. If it came back positive (it didn't), I would have had to have a radical hysterectomy as my chance of ovarian/endometrial cancer was somewhere around 60%. Also, my kids, niece and brother would've needed testing and if positive, my niece/kids would have had to start colonoscopy screening in their early 20's (instead of 34).
If I had the BRCA mutation - mine would be lopped off tomorrow. ANYTHING is better than a cancer DX. I give her a lot of credit for telling her story, which is bringing to the forefront that we need better screening and coverage across all socioeconomic strata.
How is telling people to "think this through carefully" --- my last paragraph -- a paranoid post? I have worked in the insurance industry, I know how underwriters think. I see a much larger picture and again, I find the trend a bit worrisome. Doctors are saying they are removing 10 times more healthy breasts than just a decade ago. This is worrisome. Especially when you continually read in Scientific Journals that the tests are not completely conclusive. Yes, she has the history. I said, it's her body. Her decision.
But I'm cautioning other readers without her financial resources to be very careful about following suit. I just grabbed the first study that came up when I googled for cautions on this surgery. Even WebMd has a caution on it: More Women Choose to Remove Noncancerous Breasts
Prophylactic Mastectomy: No Improvement in Survival Rate
Despite dramatically lowering chances of future breast cancers from developing, prophylactic breast removal has not been shown to cut down a woman’s chances of dying from breast cancer – a distinction that study author Stephen B. Edge, MD, FACS makes to caution patients against choosing the surgery without careful consideration.
I was once told by a researcher that 1 in 600 men will get prostate cancer by the time they are in their 60's, and if they live to be 100, that number increases two fold. So does that mean men should go around lopping off their happy parts in an effort to stave it off? That's not going to happen. The number one killer of women is not breast cancer, BTW, it's Heart Disease. So shall we have tests for that and then have heart surgery on a healthy heart? There are a lot of sheep out there who follow what their favorite celebrity does. It's not "paranoid" to caution people to think about this. There are some docs who would be more than happy to cut off body parts if they need to make another mercedes payment. And there are some insurance underwriters who would LOVE to have another reason to raise your rates. I'm just shining a light on all that...
My cautionary response about this elective mastectomy is that it may not solve anything, it doesn't mean you can stop getting checked regularly, and there just are no guarantees in life. My dad was in 100% remission from his prostate cancer, and he died in an accident. Life is funny like that. When it's your time, it's your time. Stay healthy. Eat healthy. Make good decisions in your life. Don't freak out and be very cautious when doing elective surgery of any kind. Hospitals are places to avoid if you can. A lot of people get sicker AT the hospital* than they were when they went in.
* From the above article: Dr. Barry Farr, an infectious disease expert in Charlottesville, Va., notes, "There are about two million people who acquire infections in the hospital each year and become sick. Most don't die, but some do."
I had the colon cancer equivalent genetic test (I was DX'ed with CC last July) for Lynch Syndrome. It was a cheek swab. If it came back positive (it didn't), I would have had to have a radical hysterectomy as my chance of ovarian/endometrial cancer was somewhere around 60%. Also, my kids, niece and brother would've needed testing and if positive, my niece/kids would have had to start colonoscopy screening in their early 20's (instead of 34).
If I had the BRCA mutation - mine would be lopped off tomorrow. ANYTHING is better than a cancer DX. I give her a lot of credit for telling her story, which is bringing to the forefront that we need better screening and coverage across all socioeconomic strata.
Lynch Syndrome is nasty. Know a few people who have it - all got ovarian cancer before they were 20 years old (which is how I know them). I bet you they wish they had the option of a preemptive hysterectomy instead of a hysterectomy AND chemo AND radiation... all during high school no less!
Lynch Syndrome is nasty. Know a few people who have it - all got ovarian cancer before they were 20 years old (which is how I know them). I bet you they wish they had the option of a preemptive hysterectomy instead of a hysterectomy AND chemo AND radiation... all during high school no less!
exactly.
wow - before 20? that's horrifying I don't know of anyone who has it, I never heard about it until I got my diagnosis.
wow - before 20? that's horrifying I don't know of anyone who has it, I never heard about it until I got my diagnosis.
I'm an anomaly knowing so many - when you're diagnosed with cancer at 23, everyone introduces you to other people they know who were diagnosed young. I've also been involved with the young adult cancer community so some of the people I "know" with Lynch syndrome are only online.
My dad smoked himself into lung cancer which grew outside the lungs and became lymphatic cancer. He's the only known relative with cancer so I wouldn't do a test. But I would not take an 87 percent chance. Women alter their breasts with implants or reductions and do not feel violated. Why should they if it is to likely save their life? I've had other 'altering' surgery and may need more to fix it, but it would have killed me if it hadn't been fixed so all the years inbetween have been worth it.
Cost - if you have a legit reason to be concerned (i.e. strong family history of breast cancer), insurance will cover the test. Otherwise it is very expensive.
How - yes, it is a simple blood test, and it does take 2-4 weeks to get the results back.
To the poster who asked why Angelina wouldn't "just get a mammogram every six months:" maybe because while mammograms are effective, they are not foolproof. Also, some breast cancers spread very quickly. Getting a mammogram every six months is no guarantee that a cancer will get caught before it is "too late."
Also, the article posted above about how prophylactic mastectomy may not change the risk of death - the data in that article is not based on women who were BRCA1 or BRCA2 positive. I have the most common type of breast cancer, and had a single mastectomy. In my case, my team of oncology professionals advised me there was no increased risk in getting breast cancer in the other breast. However, that is not the case for all types of breast cancer, and certainly not with BRCA+ people.
If I were BRCA+, I would not hesitate to get a double mastectomy + my ovaries removed. Nothing is 100%, but being BRCA+ is pretty darn close to being guaranteed to get cancer. And no, getting a mastectomy doesn't mean that a person has a 0% chance of dying of cancer, but the odds are much better. I like to live, so I want the best odds I can get.
Kudos to Angelina for sharing her story. I wonder if she found out she was BRCA+ before or after she chose to adopt. I am not BRCA+ but after having breast cancer plus having a strong history of breast cancer in my family, striking younger and younger with each generation, I made the decision to not have any biological children.
Insurance covers the cost, and the procedure is 95% effective in eradicating breast cancer in the future. If I had her genetic background, I would do it in a heartbeat.
I applaud a celebrity being public with an issue like this. Maybe other women will consider this life saving procedure.
If there are true and accurate genetic markers that can firmly predict the onslaught of cancer...they would have a CURE for cancer...This is still theoretical. If you can predict exactly if a disease will take place in a healthy body then surely you can come up with a treatment that STOPS the disease from ever appearing. To lop off body parts is not a cure. Most people don't have a clue how genetics really works or how it can be altered...it's still a mystery.
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I give her a lot of credit for telling her story, which is bringing to the forefront that we need better screening and coverage across all socioeconomic strata.
