BRCA testing

Tina Brown · March 2010

When I was diagnosed with my cancer and I realised it was closely linked to breast cancer I requested screening for the BRCA 1 & 2 gene change. My mum had developed breast cancer at an early age of 51 (she was cured) and my Dad's mum had breast cancer at a similar age and died from it. Armed with this information I wanted to find out WHY I HAD DEVELOPED my cancer?

I got the results yesterday and they found a "change in the gene BRCA 2" which means my body does not protect me from breast cancer & I have an 85% chance of getting it. Well I got Primary Peritoneal cancer instead!!!!!!!! (Same tissue type as Ovarian)

The information did not upset me (as I suspected as much) but instead it gave me a reason as to "why I got cancer". Also I can let my daughter and sister know so they can get screening for breast cancer much earlier. My son can also can get screened as he could be a carrier.My Dad always says to me "It is as it is" which inspires me to just accept things we can't change and get on with life and fight if you need to. I can't alter the fact I have a change in my BRCA 2 gene but I can use the information to help my family.

Has anyone else been screened for this? If so how did you feel about it & did it affect your treatment. I am kinda hoping my oncologist can use the information with my treatment.

All the best Tina xxxxxx

Unknown · March 2010

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msfanciful · March 2010

Hi Tina,
I just had my BRAC
Hi Tina,

I just had my BRAC 1 & 2 screening maybe a couple of weeks ago? So I expect by next week (I will see my oncologist), I will know of the results. I'm a bit nervous however; why I don't know since I'm already going through the worst case scenario...cancer. I thought at the very least my daughter would benefit from whatever the results would be. She already has polycystic ovarian syndrome, which is said to have nothing to do with ovarian cancer.

In reading your post however; I realized that to have the mutant gene tends to fair better in the fight.

Buy yes either way at least I'll know why I got it.

Thanks, you guys share the most knowledgeable info.

Take care,

Sharon

Hissy_Fitz · March 2010

I am scheduled to be tested
I am scheduled to be tested on March 24th. I have no family history of breast or ovarian cancer, but the mutation, if it is present, may have started with me.

I have 3 sons (though one is adopted), one daughter, 6 grandsons and 4 granddaughters, so I want to know. Forewarned is forearmed.

Carlene

Tina Brown · March 2010

unknown said:
This comment has been removed by the Moderator

Mutated BRCA gene
Hi worldtraveler
Thanks for your comments about ladies with the mutation having a better chance at remission. I never knew that.

A reason for developing OVCA - I have heard that the "act of the egg being released from the ovary damages it everytime it happens" This damage contributes to cancer. Therefore ladies who start their periods very early and/or go through the menopause late are at a highe risk of OVCA.

nancy591 · March 2010

BRCA 1&2
My oncologist recommended I be tested because I was diagnosed at a fairly young age. The only non-smoking related cancer in my family is my dad's prostate. He has been fighting prostate for probably 7 years and doing well. Did you know that BRCA1&2 could impact breast, ovarian, prostate and pancreatic cancers?

My BRCA 1&2 was negative as I knew it would be. My surgeon did tell me that BRCA 1&2 postive usually have better responses.

Someone mentioned ovulation and ovarian cancer. I didn't start menstruation until the age of 15. I had my first child before age 22yrs. I nursed all three of my children for over a year each. BUT I did have one (successful) IVF treatment. UGH! It tortures me to think this may have been a contributing factor to my ovca. My surgeon tells me no, it didn't cause my cancer. But I asked her when I was first diagnosed and I was crying when I asked. I was imaginging my son thinking his life caused my illness. I wonder if she told me no to protect my feelings, thinking what does it matter now anyway.

survivor3innj · March 2010

Testing
I come onto this sight periodically to see how "my girls" are doing- yes you are all my girls!! When I ususally go on the computer I say to my husband "Gotta check on my girls!!" You've become my friends!!This subject compelled me to write. If you remember me, my sis has a "scare" with a possibility of OVCA. We are still dealing with the potential, but trying to be as positive as possible about it. She just went to a Dr. involved in a study (I don't know which one) and may take her ovaries depending on the resultsa of her genetic testing. My Mother , My sis and I had the BRACA testing in 2003. All 3 of us had breast cancer.. my sis in '02 my Mom in '67(she is now 88), then I got it in "08. At that time my Mom was positive, but my sis and I were "inconclusive". Now they've learned more since then,so we may learn more. Maybe this scare of my sisters will turn out for the best, and we'll learn more for her daughter's sake. My one niece actually has breast cancer on both sides of her family. My daughters are adopted, so I don't have the same type of fear(although I met someone who was adopted who had BC and so did her adoptive mother). You never know!! In that vein...I did IVF also 2 times, but I really don't think that caused my BC. I truly don't think we CAUSE our cancer, sometimes S__t happens!!I haven't eaten meat in over 30 yrs. and now we say that soy causes BC!! Please!!Before I had started a thread about the possibility of excess stress causing cancer. It just seems SO MANY people I have met had excess stress before DX. I still don't think that it necessarily causes it!! There's alot of people who go through excess stress all the time... they don't get cancer!! I feel that I could possibly have offended some people before when I started that thread. I never want to offend you guys!! You guys are the greatest!! Sorry I went on and on. Now you see why I only write once in awhile... I write books!! We are having a beautiful, sunny day here in NJ. I hope that there's a beautiful day for you all also!!It can really lift your spirits!! I wish you all the very best!! I'm so happy to hear so many of you are now dancing with Ned!! CONGRATULATIONS!! xoxoxo(((()))))

Tina Brown · March 2010

survivor3innj said:
Testing
I come onto this sight periodically to see how "my girls" are doing- yes you are all my girls!! When I ususally go on the computer I say to my husband "Gotta check on my girls!!" You've become my friends!!This subject compelled me to write. If you remember me, my sis has a "scare" with a possibility of OVCA. We are still dealing with the potential, but trying to be as positive as possible about it. She just went to a Dr. involved in a study (I don't know which one) and may take her ovaries depending on the resultsa of her genetic testing. My Mother , My sis and I had the BRACA testing in 2003. All 3 of us had breast cancer.. my sis in '02 my Mom in '67(she is now 88), then I got it in "08. At that time my Mom was positive, but my sis and I were "inconclusive". Now they've learned more since then,so we may learn more. Maybe this scare of my sisters will turn out for the best, and we'll learn more for her daughter's sake. My one niece actually has breast cancer on both sides of her family. My daughters are adopted, so I don't have the same type of fear(although I met someone who was adopted who had BC and so did her adoptive mother). You never know!! In that vein...I did IVF also 2 times, but I really don't think that caused my BC. I truly don't think we CAUSE our cancer, sometimes S__t happens!!I haven't eaten meat in over 30 yrs. and now we say that soy causes BC!! Please!!Before I had started a thread about the possibility of excess stress causing cancer. It just seems SO MANY people I have met had excess stress before DX. I still don't think that it necessarily causes it!! There's alot of people who go through excess stress all the time... they don't get cancer!! I feel that I could possibly have offended some people before when I started that thread. I never want to offend you guys!! You guys are the greatest!! Sorry I went on and on. Now you see why I only write once in awhile... I write books!! We are having a beautiful, sunny day here in NJ. I hope that there's a beautiful day for you all also!!It can really lift your spirits!! I wish you all the very best!! I'm so happy to hear so many of you are now dancing with Ned!! CONGRATULATIONS!! xoxoxo(((()))))

Further prognosis for BRCA2
I just had my letter today with a much more detailed and conclusive prognosis. It states that someone like me who has a gene change on BRCA is at a higher risk of developling a second tumour. They therefore recommeded that I had my ovaries removed as a precaution. Not sure if you ladies realised but I dont have OVCA but Primary Peritoneal cancer (same tissue and histolgy)

I go to see my oncologist Monday for blood results and to find out what they will do with me now I have these results. "It never rains but it pours"

I was reading that survivor3innj talks about extreme stress being a factor in stimulating cancer growth. I must say this makes a hell of a lot of sense because a year prior to my dx I been suffered a nervous breakdown and was on meds for depression (the cause of it is still effecting me now and is more unbearable than have the cancer!!!!!) That said I know we all have cancer cells in our bodies and I do believe we can both trigger them to grow and by having a positive outlook than help with treatment.

Unknown · March 2010

Tina Brown said:
Further prognosis for BRCA2
I just had my letter today with a much more detailed and conclusive prognosis. It states that someone like me who has a gene change on BRCA is at a higher risk of developling a second tumour. They therefore recommeded that I had my ovaries removed as a precaution. Not sure if you ladies realised but I dont have OVCA but Primary Peritoneal cancer (same tissue and histolgy)

I go to see my oncologist Monday for blood results and to find out what they will do with me now I have these results. "It never rains but it pours"

I was reading that survivor3innj talks about extreme stress being a factor in stimulating cancer growth. I must say this makes a hell of a lot of sense because a year prior to my dx I been suffered a nervous breakdown and was on meds for depression (the cause of it is still effecting me now and is more unbearable than have the cancer!!!!!) That said I know we all have cancer cells in our bodies and I do believe we can both trigger them to grow and by having a positive outlook than help with treatment.

This comment has been removed by the Moderator

Hissy_Fitz · March 2010

Tina Brown said:
Further prognosis for BRCA2
I just had my letter today with a much more detailed and conclusive prognosis. It states that someone like me who has a gene change on BRCA is at a higher risk of developling a second tumour. They therefore recommeded that I had my ovaries removed as a precaution. Not sure if you ladies realised but I dont have OVCA but Primary Peritoneal cancer (same tissue and histolgy)

I go to see my oncologist Monday for blood results and to find out what they will do with me now I have these results. "It never rains but it pours"

I was reading that survivor3innj talks about extreme stress being a factor in stimulating cancer growth. I must say this makes a hell of a lot of sense because a year prior to my dx I been suffered a nervous breakdown and was on meds for depression (the cause of it is still effecting me now and is more unbearable than have the cancer!!!!!) That said I know we all have cancer cells in our bodies and I do believe we can both trigger them to grow and by having a positive outlook than help with treatment.

Will you have your breasts
Will you have your breasts removed as well? An 85% chance of developing breast cancer seems huge.

Carlene

Tina Brown · March 2010

Hissy_Fitz said:
Will you have your breasts
Will you have your breasts removed as well? An 85% chance of developing breast cancer seems huge.

Carlene

Hi Carlene
I agree 85% is a high risk, but I think I will get constant monitoring on my breasts now I've been diagnosed with BRCA2, so any sign of cancer will be spotted quickly. I'm not the sort of person to have 2 healthy breasts removed without strong evidence to suggest cancer. I know 85% is high but I feel lucky in a way because I know the hospital will be monitoring me very closely now and breast cancer if caught early enough is very curable & treatable. At least I do not have the "fear factor" "fear of the unknown" of cancer. But saying all of that I will take advice from my oncologist regarding double mastectomy. But having an elective double mastecomy is a mutilation & I don't know if I could do it???????

Unknown · March 2010

Tina Brown said:
Hi Carlene
I agree 85% is a high risk, but I think I will get constant monitoring on my breasts now I've been diagnosed with BRCA2, so any sign of cancer will be spotted quickly. I'm not the sort of person to have 2 healthy breasts removed without strong evidence to suggest cancer. I know 85% is high but I feel lucky in a way because I know the hospital will be monitoring me very closely now and breast cancer if caught early enough is very curable & treatable. At least I do not have the "fear factor" "fear of the unknown" of cancer. But saying all of that I will take advice from my oncologist regarding double mastectomy. But having an elective double mastecomy is a mutilation & I don't know if I could do it???????

This comment has been removed by the Moderator

Hissy_Fitz · March 2010

unknown said:
This comment has been removed by the Moderator

New boobs don't sound so bad....
I might try and get my surgeon to remove my breasts if my genetic testing shows positive for BRCA.

I would definitely have had my ovaries removed years ago, had I had any indication that I might someday develop OVC. The nurse who does my blood transfusions is going to have hers removed at age 40 due to a strong family history of OVC, even though she is not BRCA positive.

Tina Brown · March 2010

unknown said:
This comment has been removed by the Moderator

You have given me back hope
To everyone who has posted here, you have given me back hope with your words of wisdom. Thank-you so much for your replies they have helped me alot in coming to terms with the news and helping me to put it in perspective. If by having my ovaries removed it can reduce my chances of BC to 35% then I will have no hesitation in consenting to the surgery. Thank-you Nancy for your advice it has given me hope again when I thought I had lost it

I will log on again tomorrow after I have seen my Oncologist

Much love Tina xxxx

msfanciful · March 2010

Tina Brown said:
You have given me back hope
To everyone who has posted here, you have given me back hope with your words of wisdom. Thank-you so much for your replies they have helped me alot in coming to terms with the news and helping me to put it in perspective. If by having my ovaries removed it can reduce my chances of BC to 35% then I will have no hesitation in consenting to the surgery. Thank-you Nancy for your advice it has given me hope again when I thought I had lost it

I will log on again tomorrow after I have seen my Oncologist

Much love Tina xxxx

Hi everyone,
Well I got my
Hi everyone,

Well I got my BRAC results Thursday. They were negative, so I guess that means I will continue the fight with this beast.

I am so finished.

survivor3innj · March 2010

Save the tatas
After reading everyone's posts about this, I realize I'm sort of the reverse situation as some of you. Knowing the history in my family and having alot of issues with my uterus, I had a complete hysterectomy in '03. I hoped that maybe it could help me in not getting BC also. Well, I got it in '08. AND I'm ER+! I still didn't get a double mastectomy. Part of that decision was because I was just moving so fast so that I could get the cancer out of me. I had a partial mastectomy in the left breast. Now that time has passed, I truly am not sorry about my decision. Sometimes I question myself, but I feel I made the best decision for me.My scar is a bit uncomfortable, but nowhere near as uncomfortable as a mastectomy scar.On the other hand, I have seen some beautifully reconstructed boobs! One girl referred to them as the pot of gold after all the treatments etc. were over. If I ever get BC again, now I know that the treatment isn't that horrible- I can handle it! Believe me it wasn't fun. Early detection is the key.

Unknown · March 2010

msfanciful said:
Hi everyone,
Well I got my
Hi everyone,

Well I got my BRAC results Thursday. They were negative, so I guess that means I will continue the fight with this beast.

I am so finished.

This comment has been removed by the Moderator

Unknown · March 2010

survivor3innj said:
Save the tatas
After reading everyone's posts about this, I realize I'm sort of the reverse situation as some of you. Knowing the history in my family and having alot of issues with my uterus, I had a complete hysterectomy in '03. I hoped that maybe it could help me in not getting BC also. Well, I got it in '08. AND I'm ER+! I still didn't get a double mastectomy. Part of that decision was because I was just moving so fast so that I could get the cancer out of me. I had a partial mastectomy in the left breast. Now that time has passed, I truly am not sorry about my decision. Sometimes I question myself, but I feel I made the best decision for me.My scar is a bit uncomfortable, but nowhere near as uncomfortable as a mastectomy scar.On the other hand, I have seen some beautifully reconstructed boobs! One girl referred to them as the pot of gold after all the treatments etc. were over. If I ever get BC again, now I know that the treatment isn't that horrible- I can handle it! Believe me it wasn't fun. Early detection is the key.

This comment has been removed by the Moderator

msfanciful · March 2010

BRCA Testing
Hi Tina,

I had to get my bearings together; and thank you sooo much for being such a supportive friend.
I hope I'm understanding my definition of my BRCA 1&2 being negative as far as having no gene change being evident. So if I understand correctly, doesn't this mean that since there is no gene mutation that my body will have a more difficult time fighting off the cancer?

I thought to have a genetic mutation was (I know this sounds crazy, but none of this is good), a good thing in having a fighting chance against this cancer. Maybe I am phrasing my facts wrong. But Tuesday I will get a better understanding of my BRCA results as well
and if I am totally off base, I would love to get back to you with the correct answers. :-)

I hope all is going well with you, you look great and that's the other thing...we all look fantastic and we're walking around with cancer; go figure!

Love,

Sharon

Hissy_Fitz · March 2010

msfanciful said:
BRCA Testing
Hi Tina,

I had to get my bearings together; and thank you sooo much for being such a supportive friend.
I hope I'm understanding my definition of my BRCA 1&2 being negative as far as having no gene change being evident. So if I understand correctly, doesn't this mean that since there is no gene mutation that my body will have a more difficult time fighting off the cancer?

I thought to have a genetic mutation was (I know this sounds crazy, but none of this is good), a good thing in having a fighting chance against this cancer. Maybe I am phrasing my facts wrong. But Tuesday I will get a better understanding of my BRCA results as well
and if I am totally off base, I would love to get back to you with the correct answers. :-)

I hope all is going well with you, you look great and that's the other thing...we all look fantastic and we're walking around with cancer; go figure!

Love,

Sharon

Wednesday, when I meet with
Wednesday, when I meet with the genetic counselor, I hope to have some answers to many of these questions.

Studies do show that women who are BRCA 1 or 2 positive tend to have better results, treatment -wise. Of course, the downside to that is they are at risk of passing on the mutated gene to successive generations.

Tina Brown · March 2010

msfanciful said:
BRCA Testing
Hi Tina,

I had to get my bearings together; and thank you sooo much for being such a supportive friend.
I hope I'm understanding my definition of my BRCA 1&2 being negative as far as having no gene change being evident. So if I understand correctly, doesn't this mean that since there is no gene mutation that my body will have a more difficult time fighting off the cancer?

I thought to have a genetic mutation was (I know this sounds crazy, but none of this is good), a good thing in having a fighting chance against this cancer. Maybe I am phrasing my facts wrong. But Tuesday I will get a better understanding of my BRCA results as well
and if I am totally off base, I would love to get back to you with the correct answers. :-)

I hope all is going well with you, you look great and that's the other thing...we all look fantastic and we're walking around with cancer; go figure!

Love,

Sharon

Hi Sharon
Hi Sharon, thank-you for your replies and I thank-you also for being a supportive friend. This site gives me such focus and helps me when I have fears.

To test negative for the BRCA 1 & 2 is actually a good thing. BRCA 1 & 2 is a gene that offers us protection against breast cancer. These 2 genes (as I understand it) helps prevent us getting breast cancer. To test positive means one of these genes has mutated or has changed. With me there is some information missing from BRCA 2 so my body does not have information contained in the whole gene to give me the same protection as someone with a completed BRCA 2 (If you know what I mean!!!!) It sounds complicated I hope you understand

Therefore if your BRCA 1&2 has no change it is very good news

You are protected.

I had my appointment with my Oncologist yesterday and my CA125 has come down from 156 to 115 which is great after 4 treatments. I have my last chemo on Friday & will get my CA125 results from treatment 5 them also.

You look so well & happy in your photo & I wish you such good news with your treatment.

Take care and love to all of you xxxxxxxxx Tina

BRCA testing

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