BRACA

LPack
LPack Member Posts: 645
edited March 2014 in Ovarian Cancer #1
Good Afternoon Lady Friends,

I have not been online since about December 13th or so. Had some catching up to do with several posts, some wonderful and some makes my heart break.

Got to sing in the cantata Christmas Eve both services with my daughter-in-law and niece. What a blessing! Also had our daughter and her family (total 5, including 7 week grandson) at our house for 11 days - just left this morning. (Tired?? yes, but a good tired)

My sister called this morning and is to see her doctor in person at 1:30 for results of the on site gene. Our daughter will get her results later this week.

I do begin Hexalen a week from today. My onco/gyn has decided along with my husband and myself that I will take the remaining 5 cycles every other month instead of 14 on and 14 off.

I do pray each and everyone of you have a blessed 2009 and whatever it brings that we each give God the glory and each have a merry heart. You have become my "family".

In His Grip,
Libby
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Comments

  • LPack
    LPack Member Posts: 645
    #2
    I went with my sister and yes she is positive too. Same gene mutation. Her family doctor has already scheduled her to see my gyn. for further decisions. She is being proactive due to my circumstances. She is 48 and experiencing some premenopause, but nothing like what I did.

    I praise the Lord that she is aware of what could happen and can be on top of this disease instead of being surprised like I was.

    My daugher will have her results January 8th and my niece will now probably have the test.

    Have a great day.

    Libby
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • LPack
    LPack Member Posts: 645
    #4
    BRCA 2
    Latest update on family testing:

    Not only is my sister positive, but my daughter called this afternoon and she is too. She is currently breast feeding her 2 month old, but will soon begin alternating mammograms and MRI's.

    She is 33 and will be able to have her ovaries removed at 35 if she so wishes. The genetic specialist that she went to today asked her how she could remain so calm with the news. Jessica said that there was no sense in getting upset about it, she can now be proactive.

    Have a great evening ladies!

    Love,
    Libby
  • catcon49
    catcon49 Member Posts: 398
    #5
    LPack said:

    BRCA 2
    Latest update on family testing:

    Not only is my sister positive, but my daughter called this afternoon and she is too. She is currently breast feeding her 2 month old, but will soon begin alternating mammograms and MRI's.

    She is 33 and will be able to have her ovaries removed at 35 if she so wishes. The genetic specialist that she went to today asked her how she could remain so calm with the news. Jessica said that there was no sense in getting upset about it, she can now be proactive.

    Have a great evening ladies!

    Love,
    Libby

    My mom is BRCA 1 positive. I
    My mom is BRCA 1 positive. I was tested and I am also. The good news is they are on the verge of a new test to detect early ovarian cancer. I am 53 just had my ovaries out last year. No cancer. I have to have my daughters tested also.
  • saundra
    saundra Member Posts: 1,370 Member
    #6
    LPack said:

    BRCA 2
    Latest update on family testing:

    Not only is my sister positive, but my daughter called this afternoon and she is too. She is currently breast feeding her 2 month old, but will soon begin alternating mammograms and MRI's.

    She is 33 and will be able to have her ovaries removed at 35 if she so wishes. The genetic specialist that she went to today asked her how she could remain so calm with the news. Jessica said that there was no sense in getting upset about it, she can now be proactive.

    Have a great evening ladies!

    Love,
    Libby

    So sorry
    I'm of the same attitude as your daughter. Knowing to watch for it is much better than getting hit between the eyes with the diagnosis! I envy you with the new grandbaby. Our youngest will be 12 next month and I miss the little ones. He's 12 going on 17, I think. LOL Saundra
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #7
    saundra said:

    So sorry
    I'm of the same attitude as your daughter. Knowing to watch for it is much better than getting hit between the eyes with the diagnosis! I envy you with the new grandbaby. Our youngest will be 12 next month and I miss the little ones. He's 12 going on 17, I think. LOL Saundra

    I just went for genetics counseling and testing
    My results should be back next week. The counselor believes that my cancer came from genetics because of my family history. I am alittle concerned for my two daughters - The oldest (18) is very anxious to find out and my little one (12) is already complaining that she knows she is going to "get" it :(
    Someone told me that it is not necessarily the best thing to tell your children the truth when they are too young. What do you think?
  • JanQ
    JanQ Member Posts: 236
    #8
    newhopechurchli said:

    I just went for genetics counseling and testing
    My results should be back next week. The counselor believes that my cancer came from genetics because of my family history. I am alittle concerned for my two daughters - The oldest (18) is very anxious to find out and my little one (12) is already complaining that she knows she is going to "get" it :(
    Someone told me that it is not necessarily the best thing to tell your children the truth when they are too young. What do you think?

    testing
    I also have a 21 year old daughter and she has not been tested. The doctor's have not nmentioned it either????
  • LPack
    LPack Member Posts: 645
    #9
    JanQ said:

    testing
    I also have a 21 year old daughter and she has not been tested. The doctor's have not nmentioned it either????

    positive
    My sister's daughter is 23 and pregnant her first. She will get the test after she is done having children. As with my daughter who is positive (age 33) she will not be able to have a hysterectomy until age 35.

    My sister who is age 48 will be having her surgery February. Since there are no signs of cancer she will be having her surgery performed by a gyn surgeon - total hysterectomy with washings and a look see at her pelvic, etc. 45 minute surgery but more thorough because of being positive with BRAC2.

    Have a great snowy day. We are still at level 2, but better than level 3 as we were all day yesterday.

    In His Grip,
    Libby
  • jamilou
    jamilou Member Posts: 200
    #10
    LPack said:

    positive
    My sister's daughter is 23 and pregnant her first. She will get the test after she is done having children. As with my daughter who is positive (age 33) she will not be able to have a hysterectomy until age 35.

    My sister who is age 48 will be having her surgery February. Since there are no signs of cancer she will be having her surgery performed by a gyn surgeon - total hysterectomy with washings and a look see at her pelvic, etc. 45 minute surgery but more thorough because of being positive with BRAC2.

    Have a great snowy day. We are still at level 2, but better than level 3 as we were all day yesterday.

    In His Grip,
    Libby

    BRCA2 positive
    Hi Ladies

    It has been a while since I have been on the site. I am an 8 year survivor of OVCA stage IIb and was recently tested and found positive for BRCA2. My daughters and sisters are in the process of being tested. I met with my genetic counselor two weeks ago and after much discussion with family and doctors I have decided to have a prophylatic masectomy. My odds of getting breast cancer in my lifetime are up to 87% and after beating one cancer I am just not willing to chance another. My only other options are tamoxifen which they say is not proven to lessen your risk and screenings 3 to 4 times a year. I don't think I can live my life waiting for test results again. Has anyone else had the preventative surgery? If you have I would love to hear from you!

    Jami
    Live, Love, Laugh
  • marcy
    marcy Member Posts: 58
    #11
    jamilou said:

    BRCA2 positive
    Hi Ladies

    It has been a while since I have been on the site. I am an 8 year survivor of OVCA stage IIb and was recently tested and found positive for BRCA2. My daughters and sisters are in the process of being tested. I met with my genetic counselor two weeks ago and after much discussion with family and doctors I have decided to have a prophylatic masectomy. My odds of getting breast cancer in my lifetime are up to 87% and after beating one cancer I am just not willing to chance another. My only other options are tamoxifen which they say is not proven to lessen your risk and screenings 3 to 4 times a year. I don't think I can live my life waiting for test results again. Has anyone else had the preventative surgery? If you have I would love to hear from you!

    Jami
    Live, Love, Laugh

    BRACA2
    Hi Ladies. My MIL tested positive for BRACA2. She is a ovarian cancer survivor. She has 2 sons. (I'm married to her oldest) We have 2 daughters.
    My DH is currently taking Humira for his Psoriatic Arthritis. One of Humira's side affects could be cancer.
    What are the risks of him getting cancer? (being the son) Also..what about our daughters?
    Should all of them take the BRACA2 test?

    Another question. Is this test covered by insurance? Will the insurance company hold anything against the patient if their test comes back "positive"

    Sorry for so many questions..I'm confused. Thanks.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #12
    marcy said:

    BRACA2
    Hi Ladies. My MIL tested positive for BRACA2. She is a ovarian cancer survivor. She has 2 sons. (I'm married to her oldest) We have 2 daughters.
    My DH is currently taking Humira for his Psoriatic Arthritis. One of Humira's side affects could be cancer.
    What are the risks of him getting cancer? (being the son) Also..what about our daughters?
    Should all of them take the BRACA2 test?

    Another question. Is this test covered by insurance? Will the insurance company hold anything against the patient if their test comes back "positive"

    Sorry for so many questions..I'm confused. Thanks.

    I am BRCA2
    The gene can be passed down to sons or daughters, if your husband got tested and didn't have the mutate than your girls won't have it. If he did have it then the girls may. I have 3 children, two have been tested and have not inherited the gene mutate. My oldest daughter has never been tested. Hope that helps, and there are never too many questions. Hugs Bonnie

    PS Most insurances cover this as long as you get referal to see genetic counselor, and I have not heard of any repercussions if one tests positive. My sister did and had her ovaries removed.
  • marcy
    marcy Member Posts: 58
    #13
    BonnieR said:

    I am BRCA2
    The gene can be passed down to sons or daughters, if your husband got tested and didn't have the mutate than your girls won't have it. If he did have it then the girls may. I have 3 children, two have been tested and have not inherited the gene mutate. My oldest daughter has never been tested. Hope that helps, and there are never too many questions. Hugs Bonnie

    PS Most insurances cover this as long as you get referal to see genetic counselor, and I have not heard of any repercussions if one tests positive. My sister did and had her ovaries removed.

    Thank you BonnieR
    Thank you so much for your reply. :) Take care. :)
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #14
    marcy said:

    Thank you BonnieR
    Thank you so much for your reply. :) Take care. :)

    I got so upset..
    After reading on line that your insurance company can drop you if you test positive. I flipped out and tried to stop the test but it was too late. The woman I spoke to at the hospital told me about the "Gina Law" Has anyone heard of it? It is supposed to go into effect in november 09 I believe and will stop genetic discrimination. Has anyone else read or heard of anyone having problems with their insurance companies?
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #15
    newhopechurchli said:

    I got so upset..
    After reading on line that your insurance company can drop you if you test positive. I flipped out and tried to stop the test but it was too late. The woman I spoke to at the hospital told me about the "Gina Law" Has anyone heard of it? It is supposed to go into effect in november 09 I believe and will stop genetic discrimination. Has anyone else read or heard of anyone having problems with their insurance companies?

    No problem
    I had the test no problem, my sister had the test and tested positive and no problems. I think they have to warn you legally but the fact of the matter is, lots of women get this test and their families without any problems. Hope that helps you flip back in. :-) Bonnie
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #16
    BonnieR said:

    No problem
    I had the test no problem, my sister had the test and tested positive and no problems. I think they have to warn you legally but the fact of the matter is, lots of women get this test and their families without any problems. Hope that helps you flip back in. :-) Bonnie

    Insurance companies
    I did eventually flip back in :) I was told that there would probably be no problem - but that it has happened to some people when they tried to switch insurances (which my husband was planning on doing) I guess the bottom line is that there is already enough to worry about - you can't worry about potential problems. I mean - i already took the test so I guess it is too late to second guess (I can say that now that I have calmed down) But could you imagine not having insurance and no money to pay for treatment? It sounds barbaric!
  • jamilou
    jamilou Member Posts: 200
    #17
    newhopechurchli said:

    Insurance companies
    I did eventually flip back in :) I was told that there would probably be no problem - but that it has happened to some people when they tried to switch insurances (which my husband was planning on doing) I guess the bottom line is that there is already enough to worry about - you can't worry about potential problems. I mean - i already took the test so I guess it is too late to second guess (I can say that now that I have calmed down) But could you imagine not having insurance and no money to pay for treatment? It sounds barbaric!

    Insurance
    By law they can't use any genetic information against you. Here is a site that gives you all of the infomation on GINA's law http://www.facingourrisk.org/finding_health_care/insurance_privacy_issues.html?PHPSESSID=d773f65a571e8767b9f9ed1c340fdc0e

    I also worried but had no problems when my husband's insurance changed after I had the testing.

    Hope this helps!
    Jami
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #18
    jamilou said:

    Insurance
    By law they can't use any genetic information against you. Here is a site that gives you all of the infomation on GINA's law http://www.facingourrisk.org/finding_health_care/insurance_privacy_issues.html?PHPSESSID=d773f65a571e8767b9f9ed1c340fdc0e

    I also worried but had no problems when my husband's insurance changed after I had the testing.

    Hope this helps!
    Jami

    Gina Law
    Thank you for the site, i found it and read the information. I was glad to hear that you had no problem switching insurances, I will be getting my genetic testing results this week and my counselor is pretty certain it will come up positive because of my family history. I read in your bio that you will be having preventative surgery ... my sisters friend just had it and feels relieved!
    When will you have surgery?
  • jamilou
    jamilou Member Posts: 200
    #19
    newhopechurchli said:

    Gina Law
    Thank you for the site, i found it and read the information. I was glad to hear that you had no problem switching insurances, I will be getting my genetic testing results this week and my counselor is pretty certain it will come up positive because of my family history. I read in your bio that you will be having preventative surgery ... my sisters friend just had it and feels relieved!
    When will you have surgery?

    Surgery
    I am glad that you found the site helpful! As long as my breast MRI is clear than I will schedule surgery for mid-July. We have a cruise in May that we have been planning and a Church mission trip in late June that I would like to be healthy to attend. I am trying to keep cool and calm until the surgery although sometimes that is easier said than done. I hope your counselor is wrong and you are negative but if you need anymore information or just want to vent I can certainly relate and would love to listen.
    Take care
    Jami
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #20
    jamilou said:

    Surgery
    I am glad that you found the site helpful! As long as my breast MRI is clear than I will schedule surgery for mid-July. We have a cruise in May that we have been planning and a Church mission trip in late June that I would like to be healthy to attend. I am trying to keep cool and calm until the surgery although sometimes that is easier said than done. I hope your counselor is wrong and you are negative but if you need anymore information or just want to vent I can certainly relate and would love to listen.
    Take care
    Jami

    Thank You,,,,
    so much! I am very happy to hear you are going on a Mission Trip with your church. I have gone on many mission trips myself and it is such a wonderful feeling to give to others and share the good news of the gospel. Be Blessed!
  • LPack
    LPack Member Posts: 645
    #21
    topic
    We may need to change to another page. This looks like it may just go off the page!!

    Hugs,
    Libby

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