Oh no....fears have been confirmed. I feel sick

maureen73

My older sister, had an abnormal mammogram and subsequently went for a compression mammogram on Monday. We are waiting for the results and have been terrifed. We lost my Dad to cancer and exactly three weeks earlier, my Aunt to Ovarian cancer in late 2012. Prior to that his other sister, now deceased had breast cancer and his mother died over 70 years ago of "woman troubles". No one in our family other than myself and my Mom are aware of my sister's current situation and we have been discussing our concern that we might have the defective BRCA1 or BRCA2 gene leading me to post here earlier this week seeking information. Out of nowhere, I just received a phone call from my Mom telling me to sit down. She said she had received a letter from my first cousin who we have not spoken to in over 30 years. The letter indicated that she was attempting to contact all cousins on the paternal side of our family to let them know that five years ago she was diagnosed with breast cancer and tested positive for BRCA1 mutation and it was narrowed to her father (my paternal uncle) as the carrier. I feel like I can not breathe, I am in shock and I don't know what to do next. We don't want to tell my sister until after she gets her results back because we are afraid it would be to stressful to add to her burden. Oh no, what do we do now.............

beacon800

Well, knowledge is power and it's good to have it.  Go to a large university hospital, or a comprehensive cancer center (many university hospitals are CCC) and get an appointment with a genetics counselor who specializes in breast cancer genetics.  They'll know what you want.

Get an appointment and present the whole business to the doctor.  They will then tell you who should be tested and what the risks/benefits/outcomes etc might be.  That is your first thing to do tomorrow, get that appointment.

Pretty much  you can get control of this situation.  If you have the mutation you can take action to prevent cancer from harming you.  Sorry you are facing this, but it is good your cousin did the honor of contacting her relatives.  BTW, you may not have this gene at all.  Even if your Dad had it, you might not have gotten it.

Tfosher

I understand how hard this must be. My sister, was diagnosed with TNBC 5 weeks ago, wednesday it was confirmed she is BRCA1+ as well. She is 32, but having a very hard time. She is considered Stage2 but has lymph node involvement. She has completed her 2nd cycle of Chemo. 

I am waiting to get an apt myself. The decision to talk to your sister about this has to be hard. Her mammogram will not change regardless of you telling her now or later. She may feel like she is getting a double slap in the face if she hears both at the same time, however I would talk with your Mom and make a game-plan. My sister hated waiting to find out the results as we had no idea about any family history on my fathers side, who was adopted. She also might feel hurt to not know... 

I pray your sister does not recieve bad news, hopefully you can be preventative... 

maureen73

Today I set up an appointment at the Florida Cancer Institute with a genetic counselor for Monday. There had been a cancellation so I was lucky to get in this soon. I am nervous and have decided to only get information and not the test which they offer at the end of the session. I then have an apt. with my OBGYN who is specialist in this area at 7/25 and will decide what to do at that point. My sister is extremely frustrated because she called the office this morning and was told, "We have the results, I will give to the Dr. and he will call you at lunch." No call by 2 p.m. so she called again and was told, "He only calls at 5pm when done with patients so he will call you then, I gave him your results". No phone call.........I did talk to her about it this morning because I felt she deserved to know and I could tell she was very concerned. This is just so overwhelming.................

Tfosher, I am so very sorry for your sister and you too for having to go through this. :0(

Pattysmiles

Maureen,

In a small way, please consider yourself fortunate to have found this information out.

It will be beneficial in the decision making process regarding surgeries.



In the interim, consider checking out the DIEP board and the reconstruction boards. There are a few alternatives out there (and not all doctors do the DIEP so they might not even mention it as an option!).



I wish your sister, you, and all of your family the best. It is not an easy journey to be on but it can be done, especially helpful is the support of loved ones like yourself, and the women on these boards.



God Bless,

Pat