BRCA1 Anyone survivor breast cancer ?

Kim2
Kim2 Member Posts: 5
edited March 2014 in Breast Cancer #1
Lookin for someone who is BRCA1 ?
«1

Comments

  • ohilly
    ohilly Member Posts: 441
    #2
    Me too
    Kim 2, I am also BRCA 1. In January I had stage 1 cancer of my left breast. After I went thru chemo and had a mastectomy, I then was tested and found to be BRCA 1. I had already had a hysterectomy years ago because of fibroid tumors, so on Sept. 18 I elected to have a preventive mastectomy of my right breast. In my case, the gene mutation was passed through my father's side. In case you don't already know about it, there is an organization called FORCE that deals with the BRCA gene. Their website is www.facingourrisk.com

    I'd be happy to communicate with you about being BRCA. Let me know if there is anything else more specific you'd like to know.

    Ohilly
  • Kim2
    Kim2 Member Posts: 5
    #3
    Thank you for sharing. Yes I
    Thank you for sharing. Yes I have been to website. I was diagnosed in 2000 at 36 had lumpectomy. I did chemo and radiation. 7 years later onocologist suggested genetic testing. The test came back positive BRCA1. First in my family. Had ovary removed and planned to wait 1 year for masectomy. God had other plans. Found lump in other breast in 2007 . I did chemo and had masectomy in Feb 2008. Completed reconstruction and had port out past Friday. Now, I am just wanting more contact with someone who has BRCA1. Its like what now?
  • Kim2
    Kim2 Member Posts: 5
    #4
    ohilly said:

    Me too
    Kim 2, I am also BRCA 1. In January I had stage 1 cancer of my left breast. After I went thru chemo and had a mastectomy, I then was tested and found to be BRCA 1. I had already had a hysterectomy years ago because of fibroid tumors, so on Sept. 18 I elected to have a preventive mastectomy of my right breast. In my case, the gene mutation was passed through my father's side. In case you don't already know about it, there is an organization called FORCE that deals with the BRCA gene. Their website is www.facingourrisk.com

    I'd be happy to communicate with you about being BRCA. Let me know if there is anything else more specific you'd like to know.

    Ohilly

    How did you know which side
    How did you know which side mother or father?
  • ohilly
    ohilly Member Posts: 441
    #5
    Kim2 said:

    Thank you for sharing. Yes I
    Thank you for sharing. Yes I have been to website. I was diagnosed in 2000 at 36 had lumpectomy. I did chemo and radiation. 7 years later onocologist suggested genetic testing. The test came back positive BRCA1. First in my family. Had ovary removed and planned to wait 1 year for masectomy. God had other plans. Found lump in other breast in 2007 . I did chemo and had masectomy in Feb 2008. Completed reconstruction and had port out past Friday. Now, I am just wanting more contact with someone who has BRCA1. Its like what now?

    BRCA 1
    The reason I knew it was my father's side is because the only history of breast cancer was on my father's side, not mother's: then after I tested positive for the gene, everyone in the family was tested. I have three sisters, none of whom had it, but my cousin (father's brother's daughter) turned out to have it. This particular cousin got bc in her thirties. Then she had a recurrence years later. However, she is in her late 50's now and is perfectly fine. As for myself, as I told you I got bc in January of this year at age 53. As soon as I found out I had the gene, my mind was made up to have a preventive mastectomy on the other breast. Listening to your story (that you had a recurrence) I am very happy that I didn't wait to have the preventive mastectomy.

    I try to be as aggressive as I can in my treatment because I know I have the BRCA gene alteration. That's why I'm in a clinical trial for Zometa, a bone drug which has shown promising results to prevent recurrence in early stage patients. I am probably a little obsessed with it since every week I look at different breast cancer websites searching for clinical trials. The FORCES website has information about clinical trials if you're interested.

    When I first found out I had the gene, I felt doomed. Sometimes I still feel that way, but I feel better since I had the second mastectomy. I still worry about it, especially the possible connection to other cancers (I am due to have a colonoscopy for the first time: my doctor told me that as of now, there is not strong evidence to connect the BRCA gene to colon cancer, but that in her opinion she believes research will show a connection in the future. However, there is no history of colon cancer in my family at all).

    How are you coping with having the gene alteration? Ohilly
  • ohilly
    ohilly Member Posts: 441
    #6
    ohilly said:

    BRCA 1
    The reason I knew it was my father's side is because the only history of breast cancer was on my father's side, not mother's: then after I tested positive for the gene, everyone in the family was tested. I have three sisters, none of whom had it, but my cousin (father's brother's daughter) turned out to have it. This particular cousin got bc in her thirties. Then she had a recurrence years later. However, she is in her late 50's now and is perfectly fine. As for myself, as I told you I got bc in January of this year at age 53. As soon as I found out I had the gene, my mind was made up to have a preventive mastectomy on the other breast. Listening to your story (that you had a recurrence) I am very happy that I didn't wait to have the preventive mastectomy.

    I try to be as aggressive as I can in my treatment because I know I have the BRCA gene alteration. That's why I'm in a clinical trial for Zometa, a bone drug which has shown promising results to prevent recurrence in early stage patients. I am probably a little obsessed with it since every week I look at different breast cancer websites searching for clinical trials. The FORCES website has information about clinical trials if you're interested.

    When I first found out I had the gene, I felt doomed. Sometimes I still feel that way, but I feel better since I had the second mastectomy. I still worry about it, especially the possible connection to other cancers (I am due to have a colonoscopy for the first time: my doctor told me that as of now, there is not strong evidence to connect the BRCA gene to colon cancer, but that in her opinion she believes research will show a connection in the future. However, there is no history of colon cancer in my family at all).

    How are you coping with having the gene alteration? Ohilly

    another question
    A question occurred to me: are you estrogen receptor positive? I am ER positive: I have been told that the majority of BRCA 1 patients are triple negative. Ohilly
  • Kim2
    Kim2 Member Posts: 5
    #7
    ohilly said:

    another question
    A question occurred to me: are you estrogen receptor positive? I am ER positive: I have been told that the majority of BRCA 1 patients are triple negative. Ohilly

    I am negative. I will check
    I am negative. I will check into trials. My next oncologist appt. is Dec 5 . This will be my first real visit to discuss the BRCA1 I feel like. Ive had so many problems pop up after chemo and of course then the masectomy and reconstruction. I had 2 foot surgeries as a result of ganglin cysts in sides of both feet. Praise God they were cancer free !!! But still have trouble walking somewhat.
  • Kim2
    Kim2 Member Posts: 5
    #8
    ohilly said:

    another question
    A question occurred to me: are you estrogen receptor positive? I am ER positive: I have been told that the majority of BRCA 1 patients are triple negative. Ohilly

    Triple negative is that
    Triple negative is that negative for ER,PR,Her2 which is 3? Brain dead I am right now thanks for the help?
  • dbs1673
    dbs1673 Member Posts: 203
    #9
    testing
    I am not BRAC1 or 2 positive but I did have the testing done. I had a history of multiple biospies and finally an atypica hyperplasia in my right breast. I started tamoxafin nearly 3 years ago when I was 45. My mother had breast cancer when she was 47 so I thought thes testing would be valuable for me. I approached my mother about having it done first since she had already been diagnosed. What a horrible rift that created between my mother and me. She was totally against it and felt that I would be "doomed with the information" and would unnecesarily scare my teenage daughter. It got ugly but what I really think was the issue was she didn't want to feel responsible for "giving" me something. I have a younger sister who is the queen of denial and clearly wanted no information. I know this sounds strange and I'm really not a morbid person but somehow I always felt that I was going to have to deal with this. One and a half years ago I got the testing on my own without telling my mother. It was negative. This past May after being on the tamaxafin for nearly 3 years,I was diagnosed DCIS in the right breast. Even though my BRACA 1-2 testing was negative, I simply couldn't endure any more biopsies so I had a double mastectomy in June. I decided to tell my mother that I had the testing done. I guess my assumptions were right as she just cried and said "you mean I didn't give this to you." I don't think cancer is something you "give to someone" just like someone can't make the whole thing go away. What I hope to have learned is to not let fear paralyze us. There is still so much I'm anxious about but I know I won't hide from it.
  • Joycelouise
    Joycelouise Member Posts: 482
    #10
    dbs1673 said:

    testing
    I am not BRAC1 or 2 positive but I did have the testing done. I had a history of multiple biospies and finally an atypica hyperplasia in my right breast. I started tamoxafin nearly 3 years ago when I was 45. My mother had breast cancer when she was 47 so I thought thes testing would be valuable for me. I approached my mother about having it done first since she had already been diagnosed. What a horrible rift that created between my mother and me. She was totally against it and felt that I would be "doomed with the information" and would unnecesarily scare my teenage daughter. It got ugly but what I really think was the issue was she didn't want to feel responsible for "giving" me something. I have a younger sister who is the queen of denial and clearly wanted no information. I know this sounds strange and I'm really not a morbid person but somehow I always felt that I was going to have to deal with this. One and a half years ago I got the testing on my own without telling my mother. It was negative. This past May after being on the tamaxafin for nearly 3 years,I was diagnosed DCIS in the right breast. Even though my BRACA 1-2 testing was negative, I simply couldn't endure any more biopsies so I had a double mastectomy in June. I decided to tell my mother that I had the testing done. I guess my assumptions were right as she just cried and said "you mean I didn't give this to you." I don't think cancer is something you "give to someone" just like someone can't make the whole thing go away. What I hope to have learned is to not let fear paralyze us. There is still so much I'm anxious about but I know I won't hide from it.

    YOur post was beautiful and
    YOur post was beautiful and very meaningful. I don't know if this is a good time for a joke, but one I always liked is: If Cancer is a gift....where's the RETURN receipt!
    I really respect the way you considered other people's feelings even when they were seemingly working against you. You are wise. Today I had my first year appt. I feel better now, everything looks okay, but this morning I might have let fear paralyze me a little. Thanks for the lesson! love, Joyce
  • hward2007
    hward2007 Member Posts: 62
    #11
    Kim2 said:

    Thank you for sharing. Yes I
    Thank you for sharing. Yes I have been to website. I was diagnosed in 2000 at 36 had lumpectomy. I did chemo and radiation. 7 years later onocologist suggested genetic testing. The test came back positive BRCA1. First in my family. Had ovary removed and planned to wait 1 year for masectomy. God had other plans. Found lump in other breast in 2007 . I did chemo and had masectomy in Feb 2008. Completed reconstruction and had port out past Friday. Now, I am just wanting more contact with someone who has BRCA1. Its like what now?

    BRCA1 "triple-neg" & 34
    Hi, Iam BRCA1 so is my mom and a few dozen aunts, the gene comes from my grandfather's side of the family, I was dx in Jan. of this year just finished getting expanders out and implants put in, now they want my overies,falloipen tubes, and uterus. Not real jazzed about it. I will be getting a second opion. my ca125 levels have gone up so maybe that is where the need is but like I said not jazzed.

    The nut Heather
  • dbs1673
    dbs1673 Member Posts: 203
    #12
    happy anniversary
    Happy Anniversary Joyce and may you have many, many more!!

    dawn
  • KathiM
    KathiM Member Posts: 8,028 Member
    #13
    Not me, but my girlfriend...
    She tested positive for both. One type in one breast, the other in the other breast, a year or so later.

    She still has her breasts, but the docs are suggesting removal...she is 5 years post-dx and cancer free.

    Hugs, Kathi
  • kit45
    kit45 Member Posts: 89
    #14
    KathiM said:

    Not me, but my girlfriend...
    She tested positive for both. One type in one breast, the other in the other breast, a year or so later.

    She still has her breasts, but the docs are suggesting removal...she is 5 years post-dx and cancer free.

    Hugs, Kathi

    test results
    I go back tomorrow for my genetic tests results. I pray its negative and would appreciate good thoughts and prayers.

    Love, Kit
  • dbs1673
    dbs1673 Member Posts: 203
    #15
    sent!!
    The prayers are sent, Kit along with a reminder that we're here for support. Let us know the outcome.

    dawn
  • kit45
    kit45 Member Posts: 89
    #16
    dbs1673 said:

    sent!!
    The prayers are sent, Kit along with a reminder that we're here for support. Let us know the outcome.

    dawn

    Thanks dawn,

    Love, kit
  • mmontero38
    mmontero38 Member Posts: 1,510
    #17
    kit45 said:

    Thanks dawn,

    Love, kit

    Kit, do you have your
    Kit, do you have your results yet? Was praying that everything would work out for you. HUgs, Lili
  • kit45
    kit45 Member Posts: 89
    #18
    mmontero38 said:

    Kit, do you have your
    Kit, do you have your results yet? Was praying that everything would work out for you. HUgs, Lili

    Hi Lili,

    Thanks for thinking of me. I got my results and I am negative for the gene mutation!!! Yahooooo!!!!

    I was thrilled and sooooo is my family. Couldn't ask for better news at Thanksgiving.

    Thanks again. Love, Kit
  • Joycelouise
    Joycelouise Member Posts: 482
    #19
    kit45 said:

    Hi Lili,

    Thanks for thinking of me. I got my results and I am negative for the gene mutation!!! Yahooooo!!!!

    I was thrilled and sooooo is my family. Couldn't ask for better news at Thanksgiving.

    Thanks again. Love, Kit

    So glad to hear it. Good
    So glad to hear it. Good job to you for being able to test, prepare for the truth, wait for the truth, and deal with the whole thing. Pass the turkey! love, Joyce
  • kit45
    kit45 Member Posts: 89
    #20
    Joycelouise said:

    So glad to hear it. Good
    So glad to hear it. Good job to you for being able to test, prepare for the truth, wait for the truth, and deal with the whole thing. Pass the turkey! love, Joyce

    Amen
    Amen to that sister!! Love, Kit
  • KathiM
    KathiM Member Posts: 8,028 Member
    #21
    kit45 said:

    Hi Lili,

    Thanks for thinking of me. I got my results and I am negative for the gene mutation!!! Yahooooo!!!!

    I was thrilled and sooooo is my family. Couldn't ask for better news at Thanksgiving.

    Thanks again. Love, Kit

    Hummmmm....
    Giving-thanks, Thanksgiving...

    SUCH good news!!!

    I'm dancing for you!

    Hugs, Kathi

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