Another one diagnosed with BRCA2+ with 26

Just bumping this thread to see if anyone has any advice and support for Catarine. Thanks!

The Mods

Hi Catarine - I'm so sorry for the loss of your mother, and for your positive genetic testing. Knowledge is power, so it is better to know and be able to do something about it. I agree wholeheartedly with BarredOwl's suggestion of visiting the FORCE website, and also finding a professional genetic counselor. I'm not sure how available they are in Brazil, but you might be able to get a remote opinion by a facility like Johns Hopkins, in Baltimore, Maryland in the US. I recently requested information, and discovered that they can have a doctor look at all your information and speak to you over the phone or over the computer. The cost starts at around $550.

Take things a step at a time. There is plenty of time for a baby. Gentle hug.

There is only a limit on carrying things for 6 weeks after a bilateral mastectomy. I am a firefighter and was back to work within 3 months of my mastectomy, hauling fire hose and other heavy equipment. You'll still be able to hold your baby.

I do have 2 friends (one a childhood friend and one a local friend) who had babies after having mastectomies. I know it may be frustrating not being able to breastfeed, but the plus is being able to be their healthy mom. There is formula, and there are breast milk banks.

Hi Catarine,

First of all, I am also sorry to hear about your mom and your diagnosis. I can feel with you regarding both, however I will hopefully manage to convince you that the second "problem" isn't so bad after all.

I will tell you a little about my luckily positive history so far.

All started in 2006 when my 30-year-old sister (8 years older than me) suffered from breast cancer. Her young age, 2 sick cousins, 1 diseased aunt gave reason to think that we might have inherited the BRCA gene. Luckily, my sister had surgery (breast-sparing at first), radiotherapy and chemo and finally was cancer free.

Her whole experience and knowing more about the high risk of also falling sick at a very young age I decided to have a look at my options.

1. Find out whether I am positive, and if yes, think about next steps.

2. Don't get tested and just wait and fear!

Actually, it didn't take me a minute to decide what I wanted, and I was only 26 years old, just ending my university career. I wanted to know about my fate. How many people get the chance to find out about a live-threatening condition BEFORE anything happens? So I got tested, was positive and said to my doctor: " So what can I do about this?" His answer was prophylactic mastectomy. A little shocking at first but then I thought .. 90% risk of getting sick in the next couple of years and go through the same as my sister, or have this done, get beautiful breasts that will never hang :-), and reduce my risk to close to 0. My choice was made fast. Half a year later, after my university diploma I had DM with immediate reconstruction with silicon (2 reasons for that:1. I was too slim for using my own fat, 2: I didn't want any more than the two scares below my breasts.

I won't go into detail about the whole surgery, but I just tell you I NEVER regret being tested or taking the step of mastectomy. I know opinions differ, about whether or not it is necessary to remove (still) healthy tissue, but for me this was the only logic consequence.

After seeing the beautiful result, my sister soon decided to have the same thing done too and has been healthy for the past 12 years now, so ...

According to my doctors the risk of ovary cancer increses from 40 years with BRCA gene, which is why they told me to have kids before that, since ovaries should also be removed later.

The other thing is that I am now 34 and just pregnant (:-) - very fresh, so shouldn't really be writing about this) and of course I am now also thinking about things like breast feeding (or NOT breast feeding, etc). I currently hope this is the only "negative" effect the DM had on this. No problem conceiving or anything ;-).

I hope this helps and please feel free to ask anything you would like to know about my experience.

LOVELIFE

hi,

Glad I could help a bit. Any news on this front? All the best, lisa