Breast Cancer Support

Hi Ladies I am not in a very good mood today. I am a one year survivor Stage 1C Rads only.

I went for that BRAC1 and BRAC2 test today. I will find out in 3 weeks if I have the defective gene. I am almost sorry I went, I am not sure I am ready to find out if I carry the gene. My sisters (3) have been asking me to have it done so they can have it if I have the gene.

I am in such a crappy mood, mopping around and my head is spinning. If I have the gene it will be recommended and advised I have a bilateral mastectomy and a hysterectomy, that thought scares me to death. I told my sisters and they said I am making too much of it. If I have the gene then go for the surgery. So needless to say, I only have myself to talk to about my feelings.

I get so mad because when I am having a bad day they tell me "Why are you so uptight now. its been a year and they caught it early" I feel like they are saying "NOW GET OVER IT AND MOVE ON" Its not that easy, they don't know anything about having Cancer. I am also worried if I have the gene, my son will need to be tested, if he does he has to worry about Prostate Cancer.

Almost in tears  now. AM I making too much of it?

It doesn't sound like they are being very supportive. I can understand you wanting to go and get the test for yourself, but if they are concerned, THEY need to go and get the test, not wait on your results.

As for it being a year and "get over it". I am sorry but this is not something we just get over, that fear of reoccurence for me is always hovering somewhere. Many times I completely forget what I went through (it's been 3 1/2 years since my diagnosis), but I am telling you, the smallest thing brings it all back to me. I worry when I go in for my check ups that something will show up, I worry when I get sick that it's somehow something else etc.

So no, I do not think you are making too much of this. Not at all. Please let us know what you find out from the test, I will be praying they are all negative.

Hi, Luvs!  Welcome back to the board.  You are entitled to having a bad day once in a while.  It's normal.  I need to ask you if you spoke to a genetic counselor before having this test done.  If not, I think it is important to know a few things.  And if you decide that you truly do not want the results, you can cancel the test results.  It's not too late.

I always tell people that before deciding to get the BRCA gene testing, you should know what you will do with the results, whether they are + or -.  For me, if I was +, I was going to have my ovaries removed as well as have the bilateral mastectomy.  I was going to have the bilateral no matter what so really it was just about my ovaries.  If you are not going to do anything differently with a + result, there really is no reason for getting the test done.  If the test comes out +, it also doesn't mean that you have to have a hysterectomy or a bilateral.  It just simply says that you have a better chance of a recurrence or of having BC or ovarian cancer.  This can just make you aware of it and keep you on your toes with watching out for signs and for getting regular screening and testing. 

Even if you are +, your sisters may not be.  And even if you are -, your sisters could still carry the gene.  This is your decision, not theirs.  If they want to know if the gene is in the family, the only way they can be sure that they carry it or not, is to get tested themselves.  This doesn't involve you at all.  Simply having a BC survivor as a sister makes it one more person that could possibly be a link to a genetic cancer.  But, this doesn't mean that a radical decision has to be made if one or more of the family does carry the gene.

Some women get tested for peace of mind.  Others get tested in order to make the decision to have other body parts removed or have more aggressive treatment.  Some women with high numbers of family members with cancer don't get the test because they feel that it would just make them more stressed out if they know they carry the gene.  This is a very personal decision and you shouldn't feel like you have to do the test out of pressure from your family.  Make the decision that is right for you.

Good luck and I hope that you are feeling better about things.

I look at like this...as you already have BC, your family is going to be more aware of the signs of BC and other related cancers so they will more likely be more diligent in having screening and taking care of themselves.

Yes, I must admit, those that have not walked in our shoes do not and will not "get it" the way we need them to. Not that they are not supportive in their own way, as they do try, but once treatment is over, life goes back to normal for them but yet, each day in some way, we are reminded of our journey. I was 41 yrs. old diagnosed after my second mamm. I had a very aggressive form, fortunately found at stage 1. I had a lumpectomy, chemo, radiation, and herceptin and then a complete hysterectomy after 18 months of treatment. I have not chose to have a prophylactic masectomy as of yet. I did originally but had been through enough and chose not to. If I get a reoccurence, I'll go for it and reconstruction then. It may never happen again. I'll take the 50% chance right now. I was adopted so I had no family medical history. It made me begin to wonder so I tested. I tested positive for the BRCA2 mutation. At the time, as soon as my daughter turned 18, I had her tested as well and she too, tested positive. Needless to say, each diagnosis was a whirlwind. My out take, now a four year survivior, is that yes my life has changed forever. Not a day goes by that I don't think of it whether for a second or an hour. Do I let it run my life, no!!! What may help you is trying to find the right support group. I joined one a few years ago and today I must say, my best friends are two women from my support group and another woman, I actually met "online" who is BRCA2 positive as well. I don't know where I would be today without their love and support and understanding. No matter how good or bad I feel, these dear friends always understand and are there to support, even these four years later. If it's forty years from now, I know they will be there. A positive attitude is very key. You don't have to have one all the time, no one does. I still have some serious dark days. I have it and then I say ok, move on. Just know that you are not alone. It's just a matter of finding what works best for YOU. I recently went to a retreat for BC survivors and the facilitor, who was a survivor as well, flat out stated....no it never ends....Not that I didn't know that already, but when she said it, somehow I felt better. Find someone you can talk to, even if through email, as writing is very beneficial too. A journal can be helpful as well. You can write whatever you want to in it. Some take it and burn it, never to be read again. It's actually very empowering. You may think I'm crazy, but
I can honestly tell you that having breast cancer has been so much more of a blessing than a curse. So so many good things have come from it. Yes I was terrified and yes the black cloud still is over my head, always will be but because I chose to live my life much more than I was doing before the diagnosis, although not always easy, I wouldn't change a thing. On those dark days, I just remember how fortunate I am. I have even lost friends from this evil disease and know I still may lose more in the years to come but I would rather have enjoyed whatever time I had with them to the fullest, than to never have had them in my life at all. Hang in there, it is a process. You will get there and again, you don't have to get there alone.

Hugs,

CB