BRCA testing results
It's not often that I post but this has been bothering me so much that I thought I'd throw it out there and see if some of you can help me. In Mar 2010, I was diagnosed with breast cancer. There were 2 tumors (3 cm and 2.2 cm) in the same quadrant of one breast. My mother had bc 43 yrs ago (double mast and cancer free today) and we believe her mother died of it. The oncologist gave me the option for mastectomy, double mastectomy, or lumpectomy. At the time, I was confident that given the choice, lumpectomy was right for me. I also had the BRCA testing but didn't have the results yet. Either way that test turned out, I would still want a lumpectomy. So I had the lumpectomy surgery and soon after found out I DID have BRCA1 gene.
I had 6 rounds of chemo (Taxotere & Carboplatin), 33 radiation, and Herceptin. My cancer was grade 3 (agressive), stage 2A, estrogen +, progesterone +, and HER2 +...triple positive, very rare. I also had ovaries removed and take Arimidex daily.
Last week, I met for a routine checkup with chemo doc and he asked me if I was considering a double mastectomy! What???! This shocked me. He claims we discussed it before. Yeah, in Mar 2010 I remember having discussions about this, but not since. I felt like I went through everything in 2010 and a prophelactic double mastectomy has not even crossed my mind! Chemo doc said this is nothing urgent but something I should consider because of having the BRCA gene. He said it has nothing to do with my previous cancer but would reduce the risk of any future cancer. He said that I'm young (now 43) and because of the mutation I'm at a higher risk of developing new cancer.
I don't know what to do. Help!
Thanks,
Chris
Comments
-
Chris sorry
Chris,
Sorry that you have this mutation. You need to make an appointment with genetic counselor again and discuss your test outcome. You Mom is probably the best sourse for you to make decision. I was fortunate not having this mutation, however my consultation with genetic counselor resulted in a plan what if...
Prophylactic mastectomy is recommended for brca 1& 2 as well ovary removal. You do not need to make quick decision, however there is a science behind this statistics, which cannot be dismissed. There are new reconstruction options you can still look sexy and hot after mastectomy.
Good luck and let us know
Hugs
New Flower0 -
that is a difficult decision to makeNew Flower said:Chris sorry
Chris,
Sorry that you have this mutation. You need to make an appointment with genetic counselor again and discuss your test outcome. You Mom is probably the best sourse for you to make decision. I was fortunate not having this mutation, however my consultation with genetic counselor resulted in a plan what if...
Prophylactic mastectomy is recommended for brca 1& 2 as well ovary removal. You do not need to make quick decision, however there is a science behind this statistics, which cannot be dismissed. There are new reconstruction options you can still look sexy and hot after mastectomy.
Good luck and let us know
Hugs
New Flower
but I am glad that you got tested and know your results so that you have the information you need to make the best decision for you. I know that not all get tested and therefore don;t have that information.
A woman in my local breast cancer support group had cancer in one breast and was NOT tested for the BRCA gene. Several years later she developed cancer in the other breast and was so angry that she had never been given that test as it turned out she was BRCA positive. She had the other breast removed as well as her ovaries and is now doing well several years later.
Laura0 -
Hi Chris. I was also young
Hi Chris. I was also young (34) at diagnosis, and i opted for a bilateral mastectomy (both removed). I had the genetic testing AFTER my surgeries and chemo were finished, and found out that I am also BRCA1 positive. While i dont have to worry about cancer affecting my other breast because they're both cone, I am having a total hysterectomy next month to protect me from ovarian cancer. I have 2 very young daughters, ages 2 and 10, who need me, and I'm going to do EVERYthing within my power to prevent me from dying or getting cancer again. Just my experience with being BRCA1+, not trying to say my plan of action is any better than anyone elses.
*hugs*
heather0 -
Chris, This is a very
Chris,
This is a very personal decision to make.
The one I made was for a bilateral mastectomy. My sister died at 43 of breast cancer. She was diagnosed at 30. When I had a negative biopsy 5 years ago I decided that if I were to get CA I would have a bilateral mastectomy. I found out after diagnosis that we have 3 generations of BC on my mom's side. (we did not have contact with my mom's dad) I too had the genetic testing, it came back negative. My oncologist feels they just haven't found the gene yet for our type. I also had my ovaries out in july.
Breasts do not define who I am. They served their purpose in feeding my 2 daughters. Now, they are a liability.
Cindy
ps I was 47 when I was diagnosed last year0 -
About my momNew Flower said:Chris sorry
Chris,
Sorry that you have this mutation. You need to make an appointment with genetic counselor again and discuss your test outcome. You Mom is probably the best sourse for you to make decision. I was fortunate not having this mutation, however my consultation with genetic counselor resulted in a plan what if...
Prophylactic mastectomy is recommended for brca 1& 2 as well ovary removal. You do not need to make quick decision, however there is a science behind this statistics, which cannot be dismissed. There are new reconstruction options you can still look sexy and hot after mastectomy.
Good luck and let us know
Hugs
New Flower
she is very negative and she said to me....why are you having a lumpectomy, everyone I know that's had a lumpectomy has had to go back for a mastectomy. Not the kind of supportive mom I would like. With the research progression since her cancer 43 yrs ago, I'd like to think that the route I took was the best for ME.
Thanks for your feedback! You really have me thinking now...
Chris0 -
thanks everyonemamolady said:Chris, This is a very
Chris,
This is a very personal decision to make.
The one I made was for a bilateral mastectomy. My sister died at 43 of breast cancer. She was diagnosed at 30. When I had a negative biopsy 5 years ago I decided that if I were to get CA I would have a bilateral mastectomy. I found out after diagnosis that we have 3 generations of BC on my mom's side. (we did not have contact with my mom's dad) I too had the genetic testing, it came back negative. My oncologist feels they just haven't found the gene yet for our type. I also had my ovaries out in july.
Breasts do not define who I am. They served their purpose in feeding my 2 daughters. Now, they are a liability.
Cindy
ps I was 47 when I was diagnosed last year
I know this is a personal decision but I really wanted to see what others were faced with and what decision they made. It sounds to me I keep hearing mastectomy, mastectomy. I guess it's something I need to consider now. ughhh.
Thanks for all your comments! They really do help!
Chris0 -
Chris- just a little fyi -mckevnic said:thanks everyone
I know this is a personal decision but I really wanted to see what others were faced with and what decision they made. It sounds to me I keep hearing mastectomy, mastectomy. I guess it's something I need to consider now. ughhh.
Thanks for all your comments! They really do help!
Chris
Chris- just a little fyi - it took me weeks to make my surgical decision. I was actually surprised at how much easier my mastectomy was than I had imagined. Not trying to tell you to go that way AT ALL! But just letting you know that in my experience, the surgery and reconstruction was by far the easiest part of my cancer journey. Only you know what's best for you & there is no right or wrong answer. The right answer is the one that YOU are most comfortable with
Sending hugs your way, i know it is ALOT to think over.
*hugs*
heather0 -
Hi Chris:Heatherbelle said:Chris- just a little fyi -
Chris- just a little fyi - it took me weeks to make my surgical decision. I was actually surprised at how much easier my mastectomy was than I had imagined. Not trying to tell you to go that way AT ALL! But just letting you know that in my experience, the surgery and reconstruction was by far the easiest part of my cancer journey. Only you know what's best for you & there is no right or wrong answer. The right answer is the one that YOU are most comfortable with Sending hugs your way, i know it is ALOT to think over.
*hugs*
heather
I am sorry that you have the mutation and have difficult decisions to make.
I am BRCA negative- BUT nearly every female relative on my Mother's side of the family for the past three generations had BC or ovarian cancer, so I chose to have a double mast. after I completed treatment for Stage 1 BC. I also had my ovaries removed.
As noted above, there is no right or wrong answer. We know that this is a difficult decision and you will choose what is best for you.
Best of luck~ Jane0 -
I have the same diagnosis,BunnyJane said:Hi Chris:
I am sorry that you have the mutation and have difficult decisions to make.
I am BRCA negative- BUT nearly every female relative on my Mother's side of the family for the past three generations had BC or ovarian cancer, so I chose to have a double mast. after I completed treatment for Stage 1 BC. I also had my ovaries removed.
As noted above, there is no right or wrong answer. We know that this is a difficult decision and you will choose what is best for you.
Best of luck~ Jane
I have the same diagnosis, grade 3, stage 2, etc. I also made my decision to NOT have a double mastectomy before I received back positive test results on the BRCA. Now that I tested positive, I have been struggling with my choice. I'm seeing my onc this week as it's a chemo week, and discussing what she feels is best, but I'm 99% positive, she will recommend a double mastectomy now. I always felt if I was diagnosed with breast cancer, I would just do the double, and I was going to do that, when they originally thought my cancer was not so aggressive. Once they told me I had to do chemo, I decided to just do the lumpectomy, but again that was before the test results. Nice to hear for some that it isn't so bad. I'm nervous as well. The good in this is, that my twin daughters tested negative YAY!!!!
I would get a couple opinions and go with what makes you feel most comfortable. I want to avoid going through chemo again, so I'm leaning towards the double....of course, even at that, I've heard of many getting it in the tissue. WE just have to move forward with what we think is best for us, and deal with what comes later....LATER!!!!
Wish you all the best!0 -
I was not positive for theSueRelays said:I have the same diagnosis,
I have the same diagnosis, grade 3, stage 2, etc. I also made my decision to NOT have a double mastectomy before I received back positive test results on the BRCA. Now that I tested positive, I have been struggling with my choice. I'm seeing my onc this week as it's a chemo week, and discussing what she feels is best, but I'm 99% positive, she will recommend a double mastectomy now. I always felt if I was diagnosed with breast cancer, I would just do the double, and I was going to do that, when they originally thought my cancer was not so aggressive. Once they told me I had to do chemo, I decided to just do the lumpectomy, but again that was before the test results. Nice to hear for some that it isn't so bad. I'm nervous as well. The good in this is, that my twin daughters tested negative YAY!!!!
I would get a couple opinions and go with what makes you feel most comfortable. I want to avoid going through chemo again, so I'm leaning towards the double....of course, even at that, I've heard of many getting it in the tissue. WE just have to move forward with what we think is best for us, and deal with what comes later....LATER!!!!
Wish you all the best!
I was not positive for the genes. I had BC at 34 then again at 49. I had been anxious and was planning a propholactic mastectomy. I had seem several docs and had a mammo, it was lobular (the first one was ductal) and it was more advanced than my first one. I had always thought if it got detected again it would be early as I was watched closely.Not so. This is not to scare you, I am sure I have some undiscovered gene. I just wish that I had done it sooner. Do I miss my breasts yes I do. Do I wish I had done it before I got the second cancer? yes. Its a tough decision I wish you the best.0 -
I have had the BRCA test and
I have had the BRCA test and don't have the results yet. I want my ovaries removed if I have it and my onc is willing to discuss that. I would like to have my other breast removed but at this point my insurance won't pay for it.
Still, it's a personal decision, but the doctor told me my chances of having cancer again were greater if I have the mutation.
Judy0 -
progression shows why your Mom is correct-mckevnic said:About my mom
she is very negative and she said to me....why are you having a lumpectomy, everyone I know that's had a lumpectomy has had to go back for a mastectomy. Not the kind of supportive mom I would like. With the research progression since her cancer 43 yrs ago, I'd like to think that the route I took was the best for ME.
Thanks for your feedback! You really have me thinking now...
Chris
Chris
your Mom wants best for you
Today's science is clear with respect to bcra. mutation.
Please see generic counselor for clarification0 -
Our lives are mirrored!SueRelays said:I have the same diagnosis,
I have the same diagnosis, grade 3, stage 2, etc. I also made my decision to NOT have a double mastectomy before I received back positive test results on the BRCA. Now that I tested positive, I have been struggling with my choice. I'm seeing my onc this week as it's a chemo week, and discussing what she feels is best, but I'm 99% positive, she will recommend a double mastectomy now. I always felt if I was diagnosed with breast cancer, I would just do the double, and I was going to do that, when they originally thought my cancer was not so aggressive. Once they told me I had to do chemo, I decided to just do the lumpectomy, but again that was before the test results. Nice to hear for some that it isn't so bad. I'm nervous as well. The good in this is, that my twin daughters tested negative YAY!!!!
I would get a couple opinions and go with what makes you feel most comfortable. I want to avoid going through chemo again, so I'm leaning towards the double....of course, even at that, I've heard of many getting it in the tissue. WE just have to move forward with what we think is best for us, and deal with what comes later....LATER!!!!
Wish you all the best!
Everything you wrote I could have written myself. Amazing! I'm so happy that your daughters don't have the gene...that's great! My daughter is only 14 and my son is 17 so neither will be tested for a while. I worry about them. You said you wanted to avoid another chemo but I thought that if you had mastectomy, you don't get chemo after? I was thinking I would wait and see if I get it again, then opt for the double mastectomy but I certainly don't want to have chemo again, so now I'm more confused.
Good luck with your discussion this week. Let us know what happens.
Chris0 -
Well that's what they toldmckevnic said:Our lives are mirrored!
Everything you wrote I could have written myself. Amazing! I'm so happy that your daughters don't have the gene...that's great! My daughter is only 14 and my son is 17 so neither will be tested for a while. I worry about them. You said you wanted to avoid another chemo but I thought that if you had mastectomy, you don't get chemo after? I was thinking I would wait and see if I get it again, then opt for the double mastectomy but I certainly don't want to have chemo again, so now I'm more confused.
Good luck with your discussion this week. Let us know what happens.
Chris
Well that's what they told me at first. If I did the mastectomy I wouldn't need chemo. I have been through chemo for a different cancer 3 years ago, and really anted to avoid it, so I was all for the double M....then my onc calls me back after all my pathology reports come back and says it is a more aggressive cancer than originally thought, and the recommended treatment would be chemo, (taxotere and carboplatin), herceptin, then a hormone pill for a year. So once I heard that and discussed with him, I thought well then why go through a double mastectomy if I have to do chemo anyway.....then comes back the BRCA test!!
So things kept changing and it took a while for me to wrap my head around it and feel confident that I was making the right choice. Read a couple books on alternative methods, and a couple on standard, and watched a movie about herceptin....then actually got excited at how much the survival rate increases with those of us who are candidates for it.
This is quite the roller coaster though huh???0 -
I agree with New Flower.New Flower said:Chris sorry
Chris,
Sorry that you have this mutation. You need to make an appointment with genetic counselor again and discuss your test outcome. You Mom is probably the best sourse for you to make decision. I was fortunate not having this mutation, however my consultation with genetic counselor resulted in a plan what if...
Prophylactic mastectomy is recommended for brca 1& 2 as well ovary removal. You do not need to make quick decision, however there is a science behind this statistics, which cannot be dismissed. There are new reconstruction options you can still look sexy and hot after mastectomy.
Good luck and let us know
Hugs
New Flower
I agree with New Flower. Talk to your genetic counselor and go over your results.
Good luck to you!0
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