Scared...

mamaof3bugs

I have finished my chemo, will be starting my rads in a few weeks, I am having my ovaries out at the end of Sept. and I will have my BRCA testing on Tuesday.  I am scared to get my BRCA results, I only had a lumpectomy because I was going to be having rads no matter what due to my age, triple neg status and size of my turmor.  What if I am positive, then I will have to have a masectomy and that scares the hell out of me!!  I have three daughters and that too scares the hell out of me   Please I need some input or at least some encouragement.  Thanks ladies, Angi

Carlatap

Hi Angie, I'm awful sorry you have to go through all of this.You first need to take a few deep breaths.  I first had cancer in my rt breast at age 42 back in 02. I was healthy, breast fed my kids, and was told that the biopsi would mostly likely be benign. It was not. I had a lumpectomy, followed my 33 rounds of radiation. Then in 09 I was diagnosed with triple negative tumor, followed by lumpectomy, chemo, and radiation. Half way through radiation I was tested for BRCa testing. B/c of family history I knew there was a good chance of being positive. The test came back positive for BRCA 2. Before my radiation was done I had my overies and fallopian tubes removed which is supposed to decrease your chances of developing a new breast cancer. Because of work I decided to wait until this summer to have a bilateral mastectomy. It was done on August 11 with immediate reconstruction using the flap. Its been quite a journey. I am still in the healing process. But because its been more than a year going through it all you allow yourself to go day by day. You give yourself time to make decisions. After I was tested, my sister tested positive, and my daughter of 23 was tested positive as well. My 25 year old is not ready to be tested yet. It definately changes your world. But there are choices of how you are going to handle it. I don't know how I could do it with out my faith in God. He is my Rock. I can cry out to HIM, I can shout at HIM, and I can pray that He carry me through the bad days. And I certainly pray for healing. Through my family He gives me joy to carry on.

My onc. encouraged me to have 4  rounds of CT. I didn't want the chemo that starts with A b/c I heard that it can effect your heart. If I get a recurrence, then I would go with that chemo but I felt that the 4 rounds of CT was enough every 21 days. I was still able to work part time. I spent most weekends in bed following the chemo rounds.

Please look for a group like Gilda's club to join for this can help a lot! Also try the FORCE (facingourrisk.com) web sight. This is also extremely helpful. Whatever you do, don't try to do this alone. You need an outlet, and people to talk to and share with who have gone through this and who can give you info according to what they have experienced. This web site has helped me immensly.

I wish you all the best and I pray that your test turn out negative . I believe that only 10% of breast cancer patients come out positive for the test. I hope you are one of the 90% that are negative.

"Be strong and couragious"

Carla

imbell

My husband's family on his mother's side all have the gene, 3 of them were diagnosed 15 years ago. They are all alive and have not had metastases whereas I was diagnosed 2006 and had metastases to my bones in 2009. No BRCA gene in my family. You may be more likely to have cancer but your chances are as good or better than some of us. Have hope.

AnacortesGirl

I know this is rough but try not to be scared.  Getting the results back will be a good thing.  It's the unknown that is scary.  Once you know what you have or don't have to deal with then you can move on with life.  My BRCA2 positive results came back while I was doing neoadjuvant chemo.  It took away the stress of trying to decide if I should have a bi or uni.  The mastectomy surgery and recovery was really pretty easy (much easier than the chemo!).  I was 51 with a very supportive husband.  We talked about the options because it affects him too.  He liked the idea of waiting to decide about reconstruction at a later date.  So I've been using prothesis forms.  The bras and forms are so comfortable that I really doubt if I'll ever go back for reconstruction.

If you're negative then you can give out a big sigh of relief because then your girls will also be negative (unless there is a possibility that their father has the mutation).  If you're positive then they will have the knowledge to get into a high risk survelliance program.

Had my sister done the testing before she passed away from BC I'm sure she would have been positive (my Mom and I both came back positive).  That knowledge would have come to us at least 5 years ago -- 10 years ago if it was done when she was first dx'ed.  I would have immediately gotten tested and most likely would have had an MRI that would have detected my lobular cancer before it reached stage III.  It was detected by the mammos.

The rest of our family are in varies stages of either being tested or waiting till their closer to 30.  My cousin, who is the same age as me, came back positive and immediately had a bilateral mastectomy with immediate reconstruction.  She is thrilled with her new, smaller boobs.  She works with agility dogs and she loves the fact that she can run with the dogs and her boobs no longer hurt while she's doing it.  And odds are very high that she will never go through what I've had to face.

Latte

Don't assume that positive results mean a BMX. I am positive, and my oncologist and surgeon both told me that they recommend an ooph, but that the chance of a reoccurence in a breast is only 3% higher for someone with the gene mutation than someone without, and that 3% is not a good reason to remove a healthy breast (for someone who already has BC - otherwise they would recommend prophylactic removal). I am still undecided and am going to see a genetics counsellor tomorrow for another opinion.

tibet

Latte

I am surprised your doctor told you the change of new primary in the other breast is only 3% higher for someone with the gene mutation. I read, ones with gene mutation have risk of 80% to get BC than those without the mutation.

Latte

hi newalex - from what i know, the high % you mention is correct for an initial BC, but since I already got that one it's irrelevant... the 3% difference i mentioned is for a reoccurence, not for a new primary. the new primary is higher (from memory something like 20% over 15 yrs, but I don't recall exactly).

Anyway, i decided (after my BS and onc both recommended it) not to have a BMX at this point, but just a lumpectomy and close screenign afterwards. They said I can always change my mind down the road, but after you have the BMX there is no reversing it :-)   and anyway, because I am stage 3c, a BMX doesn't affect my life expectancy at all - the chances of dying from my current cancer are much higher than dying from a new primary in the other breast. 

but we all need to decide what is best for us individually, after weighing up all the options. good luck to all of you with  your decisions!

LISAMG

FYI- Latte, Just some advice for u to consider with your BRCA testing being recommended, especially given that your BC is triple negative, high grade. You may be higher risk for recurrence and/or a new primary This can be a red flag for a positive mutation, not always, but there is plenty of supportive research. Please consider genetic counseling, if u have not done so already. They are the BEST, most up-to-date professionals to guide u with your decision making. Best wishes.

cassou1

i finally made peace with myself-saw my BS on Nov.3, told her that i was ready to have the PBM in Jan.  shse told me what will happen, how long the surgery will take. 

BRCA1 POSITIVE