Just found out BRAAC 2
Hi all! I just found out I am BRAAC 2. I am overwhelmed. First breast cancer now this. I am reading about the risks for ovarian, pancreas and melanoma.
I will need radiation? Won't this increase my risk of melanoma? However, I guess I need it so bc does not reoccur.
My aunt had pancreatic cancer. Praying that is not my future.
Also, I am 45 and was youthful. I wonder what I will feel like with my ovaries out and on either Femara or Arimedex.
Feeling a little trapped and hopeless. Does anyone else have experience with this?
Pam
Comments
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Pamela, I am negative on the brca tests but while I was going through everything and getting that test I met with a group of women from the FORCE group in my area. They all had all the surgeries and many were young. What I can tell you is they looked great. They were doing well. It gave me a lot of hope and assurance. I was weighing BMX and after meeting them I realized that it would all be ok. If there is a FORCE group near you, find them and go to them and they will help you. Great people.
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First of all, know that you are in a really crummy part of this. It does get better emotionally. It is a lot to not only hear that you have BC, but that you are BRCA+, too. I am BRCA1+ and elected for a BMX and hysterectomy following chemo. I did not have radiation because I scheduled the BMX right after chemo. Everyone is different, and so is the treatment.
I do not feel like an old woman, but I can tell that my body has been through a lot. I work every day, spend time with my children, and do everything that I did before. I did not look at the surgeries as negatives. Honestly, I was glad to have the mastectomy. I had BC once, and I don't want it again. I could frame it mentally that my breast were trying to kill me and they had to go. As for the hysterectomy, that was no biggie. My family was complete and chemo put me in menopause anyway.
You do what you have to do. There are trade-offs. Your life will not be the same as before, but that doesn't mean it can't be a good life. I will warn you that I spent way too much time reading about BC and BRCA. The statistics are just that, statistics. Your story is unique. You are not a number. You are not a statistic. I had to move away from the research, data, information to just breathe.
Hang in there. Getting through chemo is a huge milestone. Visit the FORCE website if you are feeling anxious and don't troll the internet. Most of the research is outdated, and there are so many more options available now than even a few years ago.
I still have anxious moments, wondering what the future holds for me. It is normal to feel overwhelmed and anxious. Seek help from your oncologists if you feel like you are not coping well. They can help.
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Hi, I am BRCA 2 + also, found out after the BC dx. Yup its scary, but we kind of get more screenings and attention do to our added risk, so thats comforting. Best thing to do is to talk to a genetic counsellor about your screenings and get into a clinic that will help manage all your appts! I am 28 so I get to hold off on the ovary removal for a few mroe years. My aunt also had pancreatic cancer and another had unknown source cancer, but other than that we also had no trending in our family. it definately takes some time to get adjusted to the BRCA+ thign, but its really not bad. I responded really well to chemo, which both my MOs say is typical of BRCA patients! Thats definately a perk! Good luck. Big hugs!
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Minimac, Interesting how your Aunt had pancreatic cancer too. I was the first one with breast. I seem to be responding really well to chemo to so that is a plus. Thank you.
Demiller, you mentioned a hysterectomy but did you have your ovaries out too? You mentioned you feel good. Maybe because you still have your ovaries???? I know people who have had just hysterectomies and they can feel good after. The ovary removal and taking away estrogen is my concern.
Pam -
Hi again,
I had my ovaries removed during the hysterectomy. I was given the choice to do an oophrectomy (ovary removal) or a complete hysterectomy. Honestly, I know that not all will agree, but I was happy to get rid of any body part that might harbor cancer. I had a history of abnormal cervical cells, so it made sense for me. I'm not saying that I feel the same as before, but I do have a good quality of life. No estrogen does affect libido, skin, hair, etc.
I have two girls who need me. My bottom line was that I was willing to do whatever it took to increase the odds that this would not be back. I did not want to look back with regret. I respect everyone's decisions, but I would not go against my onco's advice. She said if she were me, she'd do a complete hysterectomy and BMX. She is one of the leading researchers in the country. I, of course, do research and discuss decisions with my husband, but I pretty much go down the path she has laid out for me.
You have some decisions ahead. Best wishes on whatever you decide to do!
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Thank you DeMiller. Reassuring though that you feel good. Pam
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BRCA1 here. No personal history of BC but family history of BC, OC, PC. Your genetic counselor (do you have one?) can tell you about your risks + screening and preventative steps to take.
I have read that there may be studies to greater define the risk of BRCA 1/2 as it relates to familial cancer. For instance you have the gene but only have OC in your family, perhaps you would be OK with breast surveillance. Same with BC and other cancers.
I will second FORCE as a resource. Invaluable for me. I also see you are in Florida. The FORCE headquarters are in TAMPA so I would bet there is a group that meets there. Also, the FORCE annual conference is in Orlando in October and I have heard that many women have benefitted from the information shared there. I am hoping I can make it.
Good luck!!!
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BRCA2 here. I found out late last year....my mammograms didn't cause any concern. Since i was BRCA2 they referred me to the cancer center. First, I received a full hysterectomy (to reduce the risk of cancer)...I am 42, have 3 children, and was VERY happy to oblige. My hot flashes aren't bad and no more cramps :-). But while this was going on , my breast oncologist started doing additional testing, including biopsy, then lumpectomy ( 10 days after the hysterectomy). I then had a complete masectomy Jun 7th. I'm SOOO thankful that I was tested., and thankful for the mastecomy, as now I have a lot less to worry about in the future. I am also thankful to educate my children on this when they are older. If I had tested for BRCA a few years earlier, maybe I wouldn't have needed the masectomy. It certainly is overwhelming, but I am feeling very blessed and feel I can help others understand the benefits of BRCA testing. Not to say I'm not having many troublesome feelings dealing with the masectomy, but I believe I this is one more path I will take in life, and I will learn something from it. Stay strong!!
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Pamelahope- I am also brca2+. It is a lot to take in. I found out a year ago at age 48 right after my lumpectomy. I had never even heard about it before. I had a nipple sparing BMX in June 2011 and ovaries removed in December 2011. I did not have to do radiation. I am taking letrozole now and feel I have done all I can to prevent a recurrence. Feel free to PM me if you have questions.
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Ginger, You are right, it is a lot to take in. However, it is getting easier. Good luck to you! Pam
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Pam
I want you to know that I had the same feeling when I find that I had breast cancer..especially, when I took the first chemo treatment. I actually, drove to a lawyers office to ask for help since there was a huge delay in getting me the information that I had the breast cancer. The knew in Sept or Oct and i was not told until 8/13/2002 of the next year.
8/13/2002 I faxed the report to MD Anderson Houston and was assigned a Oco. doctor to review my case. Had many tests and each day that a FREE class was available at the clinic I was there to hear the teacher. I learned as much as I could in approximately two week of waiting for my test date and studying.
I choose to have the chemicals prior to the lump being removed. Lump removed from the right breast 4/17/2003 followed by rad. 33 treatments.
Months after all of that I found I have Brca2 R2520X gene mutation. Then, 8/26/2009 before I had a second cancer I opted to have double Mast in Birmingham, Alabama. My next appointment for my first MRI after the surgery is schedule for one day the first week of October 2012.
I so would like to meet folks with the same Brca 2 R2520X. I have joined FORCE out of Sav. GA; however, only get information via computer. Hope to attend one of their meeting next year in Sav. Ga.
I was born in rural Webb, AL. Retired in Tallahassee, FL and hope to sell my home in Tallahassee as soon as I find that buyer..... I own another home in AL which I hope to live once the Tallahassee home is sold.
I would need to pull my medical reports to give all the details and I will do this.
Would like to get a POST... GHD
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GHD, The delay in getting your diagnosis is unconscionable! I am glad you are all right.
I hope you sell your home and get back to AL. My mutation is 6633.
Pam
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