What do you think? I have put off being tested for the Gene. My mother has had five recurrences of Breast Cancer over a forty year period and I have two aunts as well who have had masectomy. I am reluctant as I have a 21 year old daughter.
November 5, 2012 LONDON (Reuters) – British celebrity Sharon Osbourne has had a double mastectomy after discovering she was carrying a gene that increased the risk of her developing breast cancer, she told Hello! magazine in an interview published on Monday.
Osbourne, 60, told the publication that the decision was a “no-brainer” in the end.
“As soon as I found out I had the breast cancer gene, I thought: ‘The odds are not in my favor’,” she said in remarks that also ran in the Daily Mirror tabloid.
“I’ve had cancer before and I didn’t want to live under that cloud: I decided to just take everything off, and had a double mastectomy.”
Osbourne, who put the eccentric life of her family on view in the reality TV series “The Osbournes”, said she did not want to spend the rest of her life with “that shadow hanging over me.
“I want to be around for a long time and be a grandmother to Pearl,” she added, referring to her son Jack’s first child.
“I didn’t even think of my breasts in a nostalgic way, I just wanted to be able to live my life without that fear all the time. It’s not ‘pity me’, it’s a decision I made that’s got rid of this weight that I was carrying around.”
I was tested and had it confirmed I had the BRAC gene when I was thirty, as soon as I learned it was something that was in my family, I never thought twice about it. I was told that I have 90% chance in my lift time to get breast cancer.
It is on my dads side of the family, three of his sisters have had breast cancer, one dieing when she was 34. Alot of people do not think breast cancer can come from your dad and some doctors, as before my dad got tested many doctors told us that it was impossible, my dad tested positive, so them me and my sister 4 years older than me got tested. I have the gene… Am glad I found out as I am looked after well, I get MRI every year and a mammogram every two years. I decided when I was 32 that I would get my breasts removed, this brings the risk down to 45%, only to be told my BMI is to high, unfortunately I have always been a big girl. I want to have the surgery while I am still young enough to get over an operation easier. So I am now desperately trying to lost weight, so I could have the surgery. Although getting looked after by the breast clinic, I still find it hard as I have nobody to speak to about it, my sister was negotiable and my dad just feels guilty. It would be good to find some kind if support group. Hope I haven’t bored you to much,
It’s not fair, but, currently there is not lloiseatign that prevents this type of discrimination by an insurance company.I, myself, visited a Genetic Counselor to talk about the possibility of having the BRCA gene. We overlooked my family history and then the counselor advised that there is no protection against an insurance company dropping your coverage if they see the genetic testing in your file, and there is no protection against the Insurance company denying your claims should you get the disease.The best thing that you can do, if you know there is a high risk of Breast cancer (and even ovarian cancer, as there is a link between the two) for you, is to begin having mammograms as early as possible and having any unusual lumps checked out right away. Do a monthly self-exam. Talk to your doctor about the best time of the month to do the exam as the tissues change due to hormonal fluctuations. Breast tissue is on the dense side until about 35, but, that doesn’t mean that you shouldn’t have baseline scans done if you are younger than 35.One thing to consider, also, if you undergo the testing an are found to have the gene and elect to have the prophylactic mastectomy you can still get Breast cancer. The Susan G. Komen website has excellent information regarding genetic testing, prophylactic mastectomies and how to reduce your risk of Breast cancer.My choice was to opt to be more proactive with screenings rather than go through with genetic testing. Until lloiseatign is put in place to protect those who have undergone testing from being discriminated against by insurance companies, I don’t see a real benefit to patients who opt for the testing. Good communication of your concerns with your physician should lead to early prevention and detection techniques.
I was tested and had it confirmed I had the BRAC gene when I was thirty, as soon as I learned it was something that was in my family, I never thought twice about it. I was told that I have 90% chance in my lift time to get breast cancer.
It is on my dads side of the family, three of his sisters have had breast cancer, one dieing when she was 34. Alot of people do not think breast cancer can come from your dad and some doctors, as before my dad got tested many doctors told us that it was impossible, my dad tested positive, so them me and my sister 4 years older than me got tested. I have the gene… Am glad I found out as I am looked after well, I get MRI every year and a mammogram every two years. I decided when I was 32 that I would get my breasts removed, this brings the risk down to 45%, only to be told my BMI is to high, unfortunately I have always been a big girl. I want to have the surgery while I am still young enough to get over an operation easier. So I am now desperately trying to lost weight, so I could have the surgery. Although getting looked after by the breast clinic, I still find it hard as I have nobody to speak to about it, my sister was negotiable and my dad just feels guilty. It would be good to find some kind if support group. Hope I haven’t bored you to much,
It’s not fair, but, currently there is not lloiseatign that prevents this type of discrimination by an insurance company.I, myself, visited a Genetic Counselor to talk about the possibility of having the BRCA gene. We overlooked my family history and then the counselor advised that there is no protection against an insurance company dropping your coverage if they see the genetic testing in your file, and there is no protection against the Insurance company denying your claims should you get the disease.The best thing that you can do, if you know there is a high risk of Breast cancer (and even ovarian cancer, as there is a link between the two) for you, is to begin having mammograms as early as possible and having any unusual lumps checked out right away. Do a monthly self-exam. Talk to your doctor about the best time of the month to do the exam as the tissues change due to hormonal fluctuations. Breast tissue is on the dense side until about 35, but, that doesn’t mean that you shouldn’t have baseline scans done if you are younger than 35.One thing to consider, also, if you undergo the testing an are found to have the gene and elect to have the prophylactic mastectomy you can still get Breast cancer. The Susan G. Komen website has excellent information regarding genetic testing, prophylactic mastectomies and how to reduce your risk of Breast cancer.My choice was to opt to be more proactive with screenings rather than go through with genetic testing. Until lloiseatign is put in place to protect those who have undergone testing from being discriminated against by insurance companies, I don’t see a real benefit to patients who opt for the testing. Good communication of your concerns with your physician should lead to early prevention and detection techniques.
I’m not sure where you are getting your inoftmarion, but if you do test positive for the gene it is illegal for any insurance company to use this as a preexisting condition, to deny coverage or to base the cost of coverage under HIPAA. They also do not have the right to decide if you have a bilateral mastectomy or not. That decision is up to the patient period.The doctors I work with recommend the person already diagnosed with Breast cancer get the test first, because if they do not have the gene there is no reason for anyone else to be tested. If you are still concerned and you are paying for the test yourself I suggest you have it done under an alias so there is no way the results can be tracked back to you. This is common practice when working with famous and/or celebrity patients and your doctor should have no problem with it. If you do choose this route however, be very careful about keeping you paperwork as you may have a difficult time should you need copies later.EDIT: Okay, well I have received mine from a physician who spoke at a cancer meeting at UCLA. So after seeing your response I did a little searching and found it is not as clear cut as I thought, partially because it has also not been tested in the courts. There is also another point not brought up here regarding employers. I posted a link to one of the most current documents on found on the Department of Health and Human Services website so that you can read it over. Apparently this problem has been discussed for 8-10 years now and I read doing this search that Bush was supposed to sign a bill regarding this, but it did not list the bill number and did not read confirmation that it was signed. Hope this helps a little.I would go the alias route.
I’m not sure where you are getting your inoftmarion, but if you do test positive for the gene it is illegal for any insurance company to use this as a preexisting condition, to deny coverage or to base the cost of coverage under HIPAA. They also do not have the right to decide if you have a bilateral mastectomy or not. That decision is up to the patient period.The doctors I work with recommend the person already diagnosed with Breast cancer get the test first, because if they do not have the gene there is no reason for anyone else to be tested. If you are still concerned and you are paying for the test yourself I suggest you have it done under an alias so there is no way the results can be tracked back to you. This is common practice when working with famous and/or celebrity patients and your doctor should have no problem with it. If you do choose this route however, be very careful about keeping you paperwork as you may have a difficult time should you need copies later.EDIT: Okay, well I have received mine from a physician who spoke at a cancer meeting at UCLA. So after seeing your response I did a little searching and found it is not as clear cut as I thought, partially because it has also not been tested in the courts. There is also another point not brought up here regarding employers. I posted a link to one of the most current documents on found on the Department of Health and Human Services website so that you can read it over. Apparently this problem has been discussed for 8-10 years now and I read doing this search that Bush was supposed to sign a bill regarding this, but it did not list the bill number and did not read confirmation that it was signed. Hope this helps a little.I would go the alias route.
Suhir,
Thank you for your insight. I really look forward to seeing the diary of your journey. Best of luck to you this summer!
Maria
Here’s what the National Cancer Institute has to say about Insurance Companies and Discrimination:
Genetic discrimination occurs when people are treated differently by insurance companies or employers because they have a gene mutation that increases their risk of a disease, such as cancer. However, in 2008, GINA was enacted to protect U.S. citizens against discrimination based on their genetic information in relation to health insurance and employment.
Some of the protections under GINA with regard to health insurance include the following:
Premiums or contributions to a group health plan cannot be increased based on the genetic information of an individual(s) enrolled in the plan.
Insurers cannot require an individual or family member to undergo a genetic test before enrollment in a group health plan.
Insurers cannot request, require, or purchase genetic information about an individual before the person’s enrollment in a group health plan or in connection with that person’s enrollment in the plan.
Health insurers cannot use genetic information as the only basis upon which to claim a pre-existing condition is present and, therefore, to deny coverage.
Hope that helps… Lets keep the conversation going.
This is what the website says about testing positive…
What does a positive BRCA1 or BRCA2 test result mean?
A positive test result generally indicates that a person has inherited a known harmful mutation in BRCA1 or BRCA2 and, therefore, has an increased risk of developing certain cancers, as described above. However, a positive test result provides information only about a person’s risk of developing cancer. It cannot tell whether an individual will actually develop cancer or when. Not all women who inherit a harmful BRCA1 or BRCA2 mutation will develop breast or ovarian cancer.
So just because you test POSITIVE- it doesn’t mean you will develop cancer nor will those who inherit it from you. But the emotional knowledge of knowing that you have it can be overwhelming. Is it worth getting the test?
Here’s what the National Cancer Institute has to say about Insurance Companies and Discrimination:
Genetic discrimination occurs when people are treated differently by insurance companies or employers because they have a gene mutation that increases their risk of a disease, such as cancer. However, in 2008, GINA was enacted to protect U.S. citizens against discrimination based on their genetic information in relation to health insurance and employment.
Some of the protections under GINA with regard to health insurance include the following:
Premiums or contributions to a group health plan cannot be increased based on the genetic information of an individual(s) enrolled in the plan.
Insurers cannot require an individual or family member to undergo a genetic test before enrollment in a group health plan.
Insurers cannot request, require, or purchase genetic information about an individual before the person’s enrollment in a group health plan or in connection with that person’s enrollment in the plan.
Health insurers cannot use genetic information as the only basis upon which to claim a pre-existing condition is present and, therefore, to deny coverage.
Hope that helps… Lets keep the conversation going.
This is what the website says about testing positive…
What does a positive BRCA1 or BRCA2 test result mean?
A positive test result generally indicates that a person has inherited a known harmful mutation in BRCA1 or BRCA2 and, therefore, has an increased risk of developing certain cancers, as described above. However, a positive test result provides information only about a person’s risk of developing cancer. It cannot tell whether an individual will actually develop cancer or when. Not all women who inherit a harmful BRCA1 or BRCA2 mutation will develop breast or ovarian cancer.
So just because you test POSITIVE- it doesn’t mean you will develop cancer nor will those who inherit it from you. But the emotional knowledge of knowing that you have it can be overwhelming. Is it worth getting the test?
Hi ladies,
I’m a 29 year old Londoner.
Ive known I am a BRCA1 carrier for 2 years now and I had just got engaged and wanted to get married before I decided what I was going to do.
Since then I have seen a series of Doctors & been to a few hopsitals (all in London) before finally finding one that I felt right about.
I am doing so much research my head hurts but its because I’ve found that (esp within the UK) they don’t really arm you with too much “user friendly information to go away with.
You go to all of your appointments and you leave and your head is spinning and usually that means you don’t retain quite all of what you are told.
I haven several concerns about the support readily available for Young women.
As word spreads that these BRCA genes exist, young girls are finding out and if they go through anything like the journey I’ve had in terms of accurate, understandable information given to me, then it’s a real worry.
I’m trying my best to put all of my findings, research and experiences into “English”, as well as the facts / stats & a diary of the journey from start to finish (hoping to have my surgery this Summer).
Although it can be worrying and stressful being a carrier, we have been put in an awesome position whereby we have been given a heads up. Lots of people don’t have that chance so i feel obliged to do this, even if it only helps just one person then its all worthwhile. 🙂
I personally haven’t has any experience with insurance companies, as being in the UK we have the NHS but even so it hasn’t been all plain sailing, it’s still always about money at the end of the day….
Lots of love to all.
http://brcaandme.wordpress.com/me/
Hi ladies,
I’m a 29 year old Londoner.
Ive known I am a BRCA1 carrier for 2 years now and I had just got engaged and wanted to get married before I decided what I was going to do.
Since then I have seen a series of Doctors & been to a few hopsitals (all in London) before finally finding one that I felt right about.
I am doing so much research my head hurts but its because I’ve found that (esp within the UK) they don’t really arm you with too much “user friendly information to go away with.
You go to all of your appointments and you leave and your head is spinning and usually that means you don’t retain quite all of what you are told.
I haven several concerns about the support readily available for Young women.
As word spreads that these BRCA genes exist, young girls are finding out and if they go through anything like the journey I’ve had in terms of accurate, understandable information given to me, then it’s a real worry.
I’m trying my best to put all of my findings, research and experiences into “English”, as well as the facts / stats & a diary of the journey from start to finish (hoping to have my surgery this Summer).
Although it can be worrying and stressful being a carrier, we have been put in an awesome position whereby we have been given a heads up. Lots of people don’t have that chance so i feel obliged to do this, even if it only helps just one person then its all worthwhile. 🙂
I personally haven’t has any experience with insurance companies, as being in the UK we have the NHS but even so it hasn’t been all plain sailing, it’s still always about money at the end of the day….
Lots of love to all.
http://brcaandme.wordpress.com/me/
Suhir,
Thank you for your insight. I really look forward to seeing the diary of your journey. Best of luck to you this summer!
Maria