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Ne's avatar
Ne
Member
10 years ago

Overwhelmed, BRCA2 gene mutation

I'm so overwhelmed I don't even know where to start.  Quick history: I was 39 yo when diagnosed with Stage 2 Invasive Ductal Breast carcinoma in January 2015 (Hormone + and HER2 -).  Had a Mastectomy (Left breast), three tumors removed (biggest 3cm), 2 lymph-nodes in breast tested positive so had full auxiliary clearance, 22 lymph-nodes removed, none tested positive.  6 rounds of chemo finished July this year and 6 weeks radiation finished in September.  I had not had my period and blood results showed no ovary function so my oncologist prescribed Exemestane which I only started taking in October 2015.  I did end up getting my period last month and the Oncologist said I shouldn't get it again but if I did, he will have to prescribe the monthly Zoladex injections to shut my ovaries down.  So this month i did end up having another period, so he suggested I start the Zoladex and was going to send me a script in the mail.  In the meanwhile, my gene testing was done and results was due last week.

I was referred to a geneticist for gene testing due to my young age and tumor size.  I never knew my dad's family and we had no breast cancer history on my mother's side but I wanted reassurance so I went for the test.  5 weeks later and the results came back last Friday.  It wasn't good news... I tested positive for the BRCA 2 gene mutation.

I've just had the weekend to try and comprehend everything and feel totally overwhelmed because it is just so much to take in. The geneticist referred me to a Gynae-Oncologist which I can only see the 26th of November.  I am definitely considering a full hysterectomy and my breast surgeon since day one said if I was to test positive for the gene she would definitely want to do a mastectomy of the remaining breast as a precaution and I agreed.  I just didn't think this would happen.  I was so ready to put 2015 and all the trauma behind me and now this.  

I'm nervous because my breast surgeon suggested I still get the Zoladex injection to shut my ovaries down,  I know once I had a hysterectomy and ovaries removed I won't need the injections but now I find myself stressing over the fact that I can not see the Gynae before the end of the month.  I feel panicked that the longer we wait the more I am at risk.  My breast surgeon also said she wanted me to do a tumor marker blood test this week and I am now even more panicked, because I wonder if she is worried that she would ask that and it means another test for which I just don't want a positive result.  I'm petrified of the tumor marker test.  A couple of weeks ago my oncologist said he was pleased that a blood test revealed my ovaries had shut down which meant the Chemo did it's job, I was happy too, but now I since had two periods!! does that mean he was wrong?  does that mean the chemo didn't do its job?  And to know I have functioning ovaries which equals HORMONES!!! (FOOD FOR CANCER in my case) I just want them out!

I don'r really know what I want to ask or say, I just know someone on here will understand my fear and I feel so alone and scared.  A friend over the weekend told me that "at least I wasn't as bad off as another friend of ours who has Myeloma (blood cancer) because that friend has to live with that horrible cancer for the rest of her life"...I was soooo upset that she could even try to down play my cancer against someone else s suffering and for suggesting that I should feel "glad" or "thankful" or "happy" in any way or that "at least" i have what I have!!!  

My poor daughter and mum and sister are all now subjected to this too.  

I've started back at work last week after nearly 10 months off work and everyone is asking how I feel and everyone is so glad I got through my cancer but I am nowhere near THROUGH!  How do we do this for so long? How do I refocus and get myself ready for the next couple of months.  My hormones are a mess, my remaining breast is so painful from my period but I keep thinking the worst of that pain too!  I'm just totally unnerved and feel so helpless.  Please forgive my negativity and my rambling babble, I just wanted to let it out somewhere where someone might understand. 

This is soooo hard...

12 Replies

  • Hi Ne, ramble away, and maybe contact a breast care nurse or the cancer foundation.  At least your friend is still there for you, and I suppose I  hope they never understand, cause understanding only comes if they are in the same boat!!

    Pam

  • OMG - I fully understand your rambling babble - I would be scared just like you.  It's funny how people feel the need to say things like "glad you got through your cancer" - I'm not sure you are ever through it - always that lingering doubt.  I will be keeping my fingers crossed for you and hope there is no more bad test results.  Keep us posted - looking forward to more rambling babble.  RosG