Angelina Jolie has double mastectomy

[oh_gal]

My SIL's mom died of ovarian cancer. So she had a complete hysterectomy at around 43, because she said "the doctors scared her into it." She now regrets it, because of all the ensuing side effects for a woman not into menopause yet. Every woman has to make her own choice, I guess, and what is good for one, may not be good for another.

 

[Tugela]

Do you care to share your statistics?

This article says that a prophylactic mastectomy helps young women with the mutation gain in life expectancy from 3 to 5 years. It's an average, meaning that some women will benefit little or none from the surgery but some who manage to avoid the breast cancer they would otherwise have got and don't get any other lethal cancer may live a lot longer than that.

I think I would take those odds if ever in that situation.



(It is an old article from 1997 and I expect some changes have occurred in cancer survival rates since then. )

http://www.nejm.org/doi/full/10.1056/NEJM199705153362022

That article doesnt account for improved monitoring of high risk groups, nor improved treatment protocols, nor does it consider non-surgical methods for reducing risk.

The gap in life expectancy would be smaller now, and it is far from certain that there is significant benefit from prophylactic surgery.

 

[jjenny]

There are also risks to having major surgery. By the way I have never heard about cancer skipping a generation. From mutational stand point, it makes no sense.
You either inherited the defective gene, or you didn't. If you did, your child migt have inherited it. Or might have not. If you didn't, then you child won't inherit it either. So in either case, you child will have less chance than you, not more.

 

[Donjeta]

That article doesnt account for improved monitoring of high risk groups, nor improved treatment protocols, nor does it consider non-surgical methods for reducing risk.

The gap in life expectancy would be smaller now, and it is far from certain that there is significant benefit from prophylactic surgery.

Firstly, improved treatment protocols benefit both those who have had prophylactic mastectomy and get cancer anyway and those who didn't have the surgery and get cancer. Secondly, mortality is not the only possible significant benefit to consider either. It is perfectly possible to survive breast cancer with treatments but on the whole many people would prefer not getting breast cancer in the first place to surviving it. Battling the disease and the unwanted effects of the treatments may severely decrease the patient's quality of life for a long time, sometimes even permanently.

JMO.

 

[Betty P]

The BRCA1 and BRCA2 mutations were discovered in 1994. Since then, the federal government has spent about $1 billion every year on breast cancer research. We still don't know what causes breast cancer, nor how to prevent it.

The fact that there has been no progress (and very little research conducted) in preventing breast cancer is sad. Twenty years later, and the only options for women with BRCA mutations are 1) risky chemoprevention (which increases your risk of uterine cancer, as well as strokes) or 2) lopping off your breasts. It's disgraceful.

I support Breast Cancer Deadline 2020 and the Accelerating The End of Breast Cancer Act



Mammography screening is not a cure, nor is it a prevention. It's just screening. It's time to change the conversation and push for real progress.

 

[LadyL]

With her mother dying from ovarian cancer and her positive BRCA1 test, her risk of breast cancer was 87%. Having the double mastectomy cut her risk of breast cancer to 5%. Her ovarian cancer risk is 50% and she addressed this in the article she wrote: “I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex."

I admire her for exploring her options and making an informed decision. When I found a large lump in my breast and went to see the doctor I walked in and said "I have a lump. If it's a nasty one I want a double mastectomy, I don't want to muck around with less invasive procedures" and the dr was very supportive. My lump turned out to be a fibroadenoma so I didn't have to go down that road.

I did the same thing as you - had a huge lump, walked in & said if it's cancer I want a double masectomy

my mom had to have a double (even though her child-rearing years were over, she said she wanted to live to see her grandchildren grow up) and it really drove home to me what's important in life

 

[Betty P]

Should women get the gene test if their mother or grandmother passed from ovarian cancer? My Mother in law died of that about 20 years ago and no mention of a gene defect. Or, is thd test something we all need but can't afford?

Talk to your doctor about your risk, but most women don't need to get genetic testing for the BRCA 1 or 2 genetic mutations. The biggest risk factor is having a "first degree" blood relative (meaning a mother, sister, etc.) who developed breast cancer. It may also be a risk if you have a mother, aunts, etc. more than one close relatives who have had breast or ovarian cancer.

Here's a great article on CNN today from a Dartmouth professor who explains that only 1% of US women are at risk of having a BRCA 1 or 2 mutation.

Doctor Says Angelina Jolie Double Mastectomy Story 'Not Relevant To More Than 99% of American Women'

http://www.hngn.com/articles/3140/2...astectomy-story-relevant-more-99-american.htm

What Angelina Jolie forgot to mention

http://www.cnn.com/2013/05/17/opinion/welch-jolie-mastectomy/index.html?hpt=hp_c2

Genetic testing costs about $3000 and not all insurance plans cover it, especially if you don't have a family risk.

 

[txsvicki]

I'm assuming that if her ovaries are removed she still won't take hormones due to cancer risk. That will really be hard on her.

 

[danzn16]

I think it's sickening that the company that makes the testing for BRCA genes own the patent on the gene and that's why the test is so expensive. They are the only ones you can go through to test for it so they spike the prices because they can. How can you "own" a piece of DNA? So strange.


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[danzn16]

Each child a woman has that has a BRCA mutation has a 50% chance of inheriting the mutation. Even males. It can also increase the risk for other cancers, not just breast and ovarian. The risk for ovarian cancer is actually higher than breast cancer for BRCA1 but I believe it depends on the exact mutation for what risk each individual has. Maybe that's why AJ said her risk for ovarian cancer was 50% higher. I've learned in school it can be 10x higher risk for ovarian and 5x higher for breast. It would be such a hard decision to remove your ovaries as you will have major side effects from that at such a young age. Maybe they can monitor her CA125 levels as a precaution? I know this is usually only looked at as a treatment response marker and not for screening but maybe it would be an option for someone high risk? Also regular ultrasounds? Surely Something has to be possible to monitor for ovarian cancer in a high risk patient that is not seen as useful to the regular population but would be beneficial to someone high risk.


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[Zoe Bogart]

I think it's sickening that the company that makes the testing for BRCA genes own the patent on the gene and that's why the test is so expensive. They are the only ones you can go through to test for it so they spike the prices because they can. How can you "own" a piece of DNA? So strange.

I heard that, too, and can't figure how anyone can own a patent on someone else's genes. Yes, that's the reason why the cost is so high.

I've also heard a few doctors on the radio saying the preventive double mastectomy is a very bad idea, claiming cancer can begin anywhere in the body and with body parts missing, it'll just find another part of the body to become the host, and the place most likely it will develop is in the lymph system.

Also, each doctor said the preventive precedures, as well as the gene testing, are too new to know all the pitfalls.

My advance to anyone thinking about it is do a lot of research. A LOT.

 

[Betty P]

I think it's sickening that the company that makes the testing for BRCA genes own the patent on the gene and that's why the test is so expensive. They are the only ones you can go through to test for it so they spike the prices because they can. How can you "own" a piece of DNA? So strange.


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Yeah, the Supreme Court has heard arguments against Myriad Genetics on this "patent". They're expected to issue a decision sometime this summer.

Though 99% of women don't need to take the test, it would be helpful to the 1% who are at risk to have something affordable. Their patent has also prevented researchers from studying these two genetic mutations, making it nearly impossible to find real prevention (breast cancer vaccine, etc.) or better treatment for women with these mutations who get breast cancer.

Myriad Genetics has also done a lot of fear-mongering among women's groups, trying to frighten women into having the test when they don't need to. Susan G Komen For the Cure has also been involved in pushing women to get unnecessary genetic screening, since they are investors in Myriad.

 

[Betty P]

I think it's sickening that the company that makes the testing for BRCA genes own the patent on the gene and that's why the test is so expensive. They are the only ones you can go through to test for it so they spike the prices because they can. How can you "own" a piece of DNA? So strange.


Sent from my iPhone using Tapatalk

Yeah, the Supreme Court has heard arguments against Myriad Genetics on this "patent". They're expected to issue a decision sometime this summer.

Though 99% of women don't need to take the test, it would be helpful to the 1% who are at risk to have something affordable. Their patent has also prevented researchers from studying these two genetic mutations, making it nearly impossible to find real prevention (breast cancer vaccine, etc.) or better treatment for women with these mutations who get breast cancer.

Myriad Genetics has also done a lot of fear-mongering among women's groups, trying to frighten women into having the test when they don't need to. Susan G Komen For the Cure has also been involved in pushing women to get unnecessary genetic screening, since they are investors in Myriad.

A sensible approach to genetic testing is best for patients, but we need to discover a real means of preventing breast cancer.

 

[danzn16]

Yeah, the Supreme Court has heard arguments against Myriad Genetics on this "patent". They're expected to issue a decision sometime this summer.

Though 99% of women don't need to take the test, it would be helpful to the 1% who are at risk to have something affordable. Their patent has also prevented researchers from studying these two genetic mutations, making it nearly impossible to find real prevention (breast cancer vaccine, etc.) or better treatment for women with these mutations who get breast cancer.

Myriad Genetics has also done a lot of fear-mongering among women's groups, trying to frighten women into having the test when they don't need to. Susan G Komen For the Cure has also been involved in pushing women to get unnecessary genetic screening, since they are investors in Myriad.

How absolutely sad. There should somehow be laws against conflicts of interests in medicine. There are for doctors. Why not for corporations also? It's sick


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[Elley Mae]

All I can say is lucky for her that she has the money she has. I would think that the whole bill for all she had done was paid for by her.

 

[Cherry]

Radical Sx options fuels debate:

http://www.bloomberg.com/news/2013-...-fuels-debate-on-breast-cancer-treatment.html

 

[Cherry]

I'm assuming that if her ovaries are removed she still won't take hormones due to cancer risk. That will really be hard on her.

She would be very wise to leave at least part of one ovary; done by "shaving" it down. She will suffer insomnia, and many other horrid side effects.

 

[Cherry]

I'm assuming that if her ovaries are removed she still won't take hormones due to cancer risk. That will really be hard on her.

She would be very wise to leave at least part of one ovary; done by "shaving" it down. She will suffer insomnia, and many other horrid side effects.

 

[belimom]

Angelina Jolie's aunt dies of breast cancer days after op-ed


....Debbie Martin was the younger sister of Jolie's mother, Marcheline Bertrand, whose own death from ovarian cancer in 2007 inspired the surgery that Jolie described in a May 14 op-ed in the New York Times.

According to her husband, Debbie Martin had the same defective BRCA1 gene that Jolie does, but didn't know it until after her 2004 cancer diagnosis....

http://www.cbsnews.com/8301-207_162...-aunt-dies-of-breast-cancer-days-after-op-ed/

 

[danzn16]

She would be very wise to leave at least part of one ovary; done by "shaving" it down. She will suffer insomnia, and many other horrid side effects.

Unless it turns cancerous. I'm not sure how they will determine what is best. Side effects and quality of life will definitely have to be taken into account with surgery, but leaving any ovarian parts will still have the increased risk of cancer, which is usually stated as higher than the risk of breast cancer in these patients. I'm not sure why the percentage is lower in Jolie's case. However ovarian cancer is much more deadly than breast so it will be interesting to see what she decides and what doctors suggest as best plan of action.


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