Brca1 - Some open questions

Your decisions should be based on your dr's advice and what you know in your gut is right for you but I did want to share some of my thinking.

My mom died from breast cancer when I was only 6 so I was certain I would inherit her genes and get it someday. And yet, even feeling this way, I never would have done the genetic testing for BRCA, etc. or a prophylactic BMX. I preferred to bury my head in the sand and hope for the best. Now that I have been diagnosed and treated for breast cancer (BRCA negative, as it turns out) I would do anything to turn back time and remove everything before cancer had a chance to start. Having cancer changes your psyche. I have read that no matter how early you catch it, the cancer always has the ability to spread. In my case my cancer was small and slow growing so my odds are very, very good but that fear, that knowledge that cancer might still be lurking is always at the back of my mind. Oh, to have had that crystal ball to know what was coming.

In your case you have that crystal ball. Can you live with the uncertainty, of always having the worry hanging over your head - or are you fairly comfortable with the frequent testing and then fighting the cancer if it starts? That's only something that you can answer.

While we have some very good treatments for BC, especially if caught early, they are "treatments" with side effects that have the potential to damage your health. I had it easier than most. I avoided the harshest treatments, radiation and chemo, but take Femara for the next 5-10 years. That causes side effects too, especially bone loss (and more drugs for that) and I just don't feel like myself anymore. At least it gives me the feeling that I'm doing what I can to keep the cancer from spreading. In your case you have the opportunity to stop it before it starts. Tough call but it least you get to make a decision. Most of the rest of us here did not.

I wish you the best in a very difficult decision.

Lucky

Hi Omina! I’m going to share my story because I’m another of those looking back on the “what ifs” of BRACA testing and results.

First, some family history. My mom and both of her sisters are BC survivors. None of them had ovarian issues. My mom’s brother is a prostate cancer survivor. My father and one of my 2 brothers are also prostate cancer survivors. So I’ve always known I was at a high risk. I’ve had cousins get BRACA tested in the past and got negative results so I didn’t get tested myself until AFTER I had been diagnosed. (Mine was negative as well, which I find interesting since I have a Bc diagnosis) I found 2 of my 3 lumps myself. Had 1 lumpectomy (negative) in 2001, a MRI guided needle biopsy (negative) in 2006 and a needle biopsy (negative) prior to my lumpectomy and subsequent diagnosis and BMX last month. I was never ready to make a decision about preventative procedures until it was too late to be preventive. I applaud you for being able to think about taking that step.

I’m on Tamoxifen now, and have been thrown head first into menopause. It has not been enjoyable but I can deal with it if it keeps cancer at bay. Ultimately, the decision is yours to make with guidance of your doctors. But for my part, I wish I had done something sooner.

Best of luck in your decision making.

Omina, keep working through it. I feel like I kinda always knew it would be me with BC. I didn’t want it, but in a way I really expected it. That’s quite a different journey from yours. Thank goodness for good doctors!

I’m short on my journey with Tamoxifen induced menopause but am trying to embrace the hot flashes when they come. So far it has been night sweats. Every night at about the same time. But if that’s what it takes to beat this, well, I can keep a clean shirt next to the bed, right!

Bless you on your journey. It isn’t an easy one with easy answers, we all just do the best we can. Sounds to me like you have a good head on your shoulders and an angel of a mum on your side as well. Hang in there