BRCA2 Just Diagnosed

Oh Jen, you describe my life!  I also have one perky boob and now they first have to take the healthy breast and put an expander in that one too.  I heard the keyhole surgery is the easier one of the two.  What does bug me a slight bit and I am unsure though if it is just hormonal with ovaries shutting down from zoladex injection, but my healthy boob at the moment is really sore, especially on the outside area and I am petrified of if although my oncologist recons I should still be 'covered' by the chemo i had this year so he is not concerned and hasn't asked for ultrasounds or scans for this at all.  My 1 year post diagnosis MRI is due Feb 2016 that is when they are happy to look at and discuss my planned mastectomy, not any earlier as they want me to finalise the hysterectomy and get that out of the way firs.  Please keep in touch Jen, it is nice to hear from someone who's done it.  Hugs and hope your recovery goes well x

Hi 

I feel for you and am lost for words. Do take care.

rosemary

BRCA2 diagnosis is a kick in the guts and I took it harder than my actual BC diagnosis, like you I'd just returned to work, I got the call on my second day back. I was 41 and my mum was 42 when we were diagnosed yet I still wasn't expecting it.That was in July, it was the first time through all the treatment- lumpectomy, chemo, mastectomy that I lost it. When people asked how I was I answered truthfully that, 'I'm not quite finished feeling sorry for myself yet'. They actually reacted better to that than my polite, 'I'm good' so now I tell it like it is.

Once I'd dusted myself off it was possible to see the finish line again, it is a little further away but at least it's there. I've decided I'm doing an obstacle course rather than a marathon as some parts are a mammoth climb and I need help but other are much easier to get through. Hopefully you get a little time to stop and cocoon yourself until you are ready to put your head up, then catch your breath before you have to set off again  and I hope you can still at least see glimpses of your finish line as it does make it a whole lot easier.

The hysterectomy/tubes/ovaries if it is being done laproscopically is a breeze compared to the breast surgeries  (the GO said not uncommon for some women to go back to work after 7 days but others need 14). The thing that helped give me a new bit of energy was a discussion with the Gyny Onc.He told me that the outcomes for BRCA patients are actually really good (sorry, I can't remember the actual stats).

I had the prophylactic mastectomy on my remaining breast 4 weeks ago and I'll admit to not wanting to play the game anymore. It was supposed to be my exchange surgery..the finish!... but instead the expander had to stay in and the other breast gets taken. Now on the other side I can see it as another obstacle cleared, another step closer. And when I start to feel myself wilting I remind myself that there is an up side; rather than one perky boob, soon I'll have a matched pair and I NEVER have to have another mammogram or pap smear again. When you can smile at that, you know you are ready to go again.

We'll be cheering for you at each obstacle and I'll see you at that finish line, Jen x

Hi Rene Another big shock for you, and I think it is shock we go through, the knowledge is power comment is excellent though, so much research on your side.

You've all made me appreciate my two best friends though - both have lost their sons, and one her parents to cancer and now her husband, the other being diognosed with lupus.  They don't sugercoat things - ie you look like crap, hope you feel better than you look, and you have aged ten years!!!  But I can go to them and tell the truth - and we all can agree that things have gotta get better.  And get on with it Pam

Oh Rene, how my heart aches for your struggle. Nothing about this battle is fair and to change the goalposts just as you reach them seems particularly cruel. None of us know what the future holds.....sometimes that can be a kindness. When I was first diagnosed, the future looked overwhelming. But at the beginning of my battle my team painted a picture of surgery then chemo then radiation then hormone therapy. It gave me a framework to get my thinking around. If they had told me at the start that it would be the heaviest chemo followed by extra long radiation, I don't think I would have found the courage to persevere. I only knew each step along, what was needed just for this treatment. You've been there Rene, you found the courage day by day to just deal with here and now. You persevered and triumphed through your treatment. Look back on all you have achieved and be proud of your courage and your stamina. Now you have new knowledge, shocking & unexpected,  but knowledge is power. Take the time to breathe and recover from the shock. Take time too, to think I now know about the BRCA2 gene, I am empowered to make new and brave choices. 

Praying you find strength and hope and joy, with love, Tracey xx

So true Christine.  I like your response to the 'you look good' one.  So nice to come to a place where people 'get' what I feel.  And yes, everyone asking means so well and honestly don't know what else to say to us but "you look good' or "so glad your treatment is over" etc.  and we can't crucify them for this.  Just really comforting to know that everyone on here understands what goes on in my head.  Hope all is going well with you too Christine, Hugs, Rene x

Thank you for your reply.  I too had a virtual 'shelf' during treatment to just deal with today's issues today and not try and deal with more than what is required at the time.  Everything else like the next chemo sessions or radiotherapy or testing etc all went to the virtual shelf until it was time to deal with it.  Keep putting one foot in front of the other, we all find our way through and before you know it you will come out on the other side. We all have to believe that while we are standing in the shadow of the cloud, the sun is definitely still shining behind it.  Keep strong xxxx

Goodness - what a journey thus far!  Someone moved the damned goal posts - as you say you will continue on the marathon knowing that this hurdle is just that, a hurdle to strengthen you character and determination!!

Take care............people are always asking us how are you but when you give an honest answer they almost duck for cover like they wished they hadn't asked........stock answer; I'm fine Thank you!

It is difficult as someone will say you look good, it's almost got a but in the sentence but not quite; and I say to myself, thank you I try hard to disguise the discomfort! 

Goodness they mean well but some days we find their responses difficult to cope with.  May they never find out what it is all about as it means another one is in the same boat.

Sending you positive vibes

Christine xx

Hi Ladies yes I'm also sick of telling people I'm ok. The look on peoples faces when you tell them you feel crap, is one of disbelief. I'm so sorry your marathon has started again it ishard sometimes to find that wariour strength but somehow we do. Thinking of you and sending you a hugxxx

I'm so sorry to read this Ne.  I know I'm counting the weeks and months to the end of this treatment and I'm pretty sure we all fear an extension of any of it.  I don't know what to say except yep I constantly do the I'm fine answer I find it easier than the truth how can we possibly explain what really goes on.  My love and strength keep posting we all get it here all the fears the marathon I prepare myself for each step and try not to think about the next til that time ( that doesn't always work, aniexty has become my new unwanted friend xxx big hugs