Forum Discussion
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
lol on the upside of having another body part removed! I agree!!! Take it all! I just want to live and honestly I am looking forward to a boob job that I have always wanted but was too afraid to get. New perky boobs at 40, too awesome...hehe....
About your treatment, it must have been a big shock for your system and I know how upsetting the news when they told you that lymphnodes were involved. I understand better now why they do chemo first for some patients, which I didn't understand before, thanks for explaining that to me it makes prefect sense that your health would have been compromised and infection riks etc after chemo. We learn so much through this all. If you dont mind me asking, do you work?
Hi again NE. Glad you are feeling better. This really is a roller coaster ride isn't it? When I discovered my BRACA2 status I remember the genetic counsellor telling me I was remarkably calm. I think this is because with or without BRACA2 I had breast cancer, that fact remained unchanged. Finding out that I had the BRACA2 mutation in a way made it easier for me as it gave some sort of answer to all the why questions which most breast cancer suffers never get. It was good to know my BRACA2 status before surgery but this was only because I started my treatment regime with chemo - which actually isn't the best sign - starting with chemo is typically for those with bigger tumors or considerable lymph node involvement - I fit the later category. I had wanted to have a double mastectomy straight up but my surgeon declined. When I had my initial surgery (mastectomy and expander on cancer affected side) I had just completed chemo and was still considered to be in a compromised state health wise due to cancer still in my system and the impact of chemo, and therefore vulnerable to infection and poor healing after surgery. Hence the surgeon insisted we would complete treating the cancer I had before starting preventative steps. I was also prescribed Zoladex but now that I have no ovaries to shut down it is one less drug that I need - the up side of having yet another body part removed! (sorry if this is in poor taste - my humor tends toward the dark especially since cancer entered my life). The oncology gynocologist who removed my fallobian tubes and ovaries said in a way those of us with confirmed genetic breast cancers are in a more fortunate position than those with a visible family history but with negative genetic testing outcomes - the dilemma remains for them as to whether to consider preventative treatment where as for us the decision is pretty much made. Love to stay in touch, keep well : )
Thank you so much for writing about your experience. It helps to hear from someone that has gone through a similar experience. It sounds like you are ticking all the right boxes with your proactive approach. I have since calmed down heaps since my initial post. I was struck with fear and looking back at my post now I actually had to smile at myself. It is still a shock but I have since had the zoladex injection which is shutting down my ovaries and had a good long talk with my amazing oncologist who definitely put my worried mind at ease. I realize now that my gene status does not mean my initial cancer treatment was futile. I am meeting the gynae-oncy at the end of November to discuss my hysterectomy and my breast endo dr is happy to see me in February to discuss mastectomy (this is when I will have my 1 year post diagnosis checkup anyway too). For now I have calmed the farm heaps (chuckle). I hope you recover well and feel better soon. I have to say, in hindsight i also wish they had done my gene testing in the beginning because I could have had both removed back then but with me it was mastectomy followed by chemo and radio. It is what it is though and I am just glad I have options. Options are always better than no hope hey. Hugs and get well soon. Keep in touch too if you'd like. It's neat to know another 40yoish person on here. x
Hi NE,
Sorry you are doing it rough at the moment. I was diagnosed at 42 yo with invasive ductal carcinoma in October 2014 so have just ticked over my 1 year anniversary. I too am positive for the BRACA2 mutuation. I just had my ovaries and fallobian tubes removed yesterday & came home from hospital today. The genetic element certainly prolongs treatment doesn't it?
I initially thought I'd be finished with treatment months ago but the preventative treatment after completing active treatment has stretched things out. Because of lymph node involvement I started by treatment with chemo, then mastectomy after genetic testing revealed BRACA2 status (otherwise would have had a lumpectomy). Then radiotherapy then mastectomy on non cancer impacted side. Ovaries went yesterday. I will swap my expanders for implants in Feb & hope to get my new nipples mid year. There is a light at the end of the tunnel which you will see soon. After a couple of really tough months emotionally May thru to July I can now say I actually feel good again and have regained my optimism for the future, hopefully free of cancer. Sorry this is a bit of a ramble, still drug affected from yesterday! I probably shouldn't type whilst high!!! The one positive of my BRACA2 diagnosis has been informing other family members so they can make informed decisions regarding their risk.
Best wishes to you. XXXXXX
Thank you Lisa it completely does my head in and I think it all just finally caught up with me yesterday. I feel more in control today. I had my 1st zoladex injection this afternoon and I will see the Oncologist this Friday to discuss all my concerns. Thank you for taking time out to respond to my post, it is so nice to know there are people who care and understand. x
Hi Christine. I just started writing down my questions to ask my Oncologist this Friday. I also had my first zoladex injection today, so I feel more in control now. I was a mess last night when I wrote my post. Thank you for taking time out to answer me and for your practical suggestions. x
Thank you Pam x
Thank you RosG, I at least got the Zoladex injection today and that is giving my some peace of mind. I had a massive emotional breakdown this morning and it was the first tears I cried since last Friday when I heard my result. I guess it all caught up with me today. I do feel so much better though, just letting all of the frustration out and just getting acknowledgement from everyone on here that "yes this isn's easy" and for just listening. Thank you so much for that. x
Sounds to me like you need to take some more time to recover first.
You articulated so well why breast cancer is such an awful disease. It isn't a simple situation. It really does your head in.
For now though I hope you can congratulate yourself, at least a little bit, on getting through round 1. You got rid of the local cancer and you survived chemo and radiation. That takes time to get over.
Can you get your team to buy you some space in which to get strong again before starting round 2? Get their reassurance that a month here or there won't matter.
These are big decisions to make.
Hi - goodness you have so much to deal with at present. As to friends, we've all experienced their well meaning comments and they just don't realise; this is not a competition; none of us want to have our condition played off against someone else.
Writing your thoughts down helps to understand where you are at. Do you have a breast care nurse who maybe able to guide you along and or a counsellor? At diagnosis I saw a counsellor and she had said to me whenever you start to feel overwhelmed take a deep breath and pat one leg saying yes this is my leg and it is still there and then the other leg. It helps to calm you down and brings you into now as your focus has come back to the now.
Take care
Christine xx
