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I just found out 3 weeks ago that I tested positive for PALB2. And so my journey begins. 2 years ago my sister was diagnosed with stage 3 breast cancer. She had a mammogram in April of 2014 and nothing was detected. In June of 2014, SHE found a lump. My sister chose to have genetic testing done prior to her surgery. She tested negative for BRCA1 & BRCA2 but tested positive for the PALB2. She chose only to have the 1 breast removed. That was her choice, her decision and her body. I can do nothing but respect her decision and support it. I had a 50/50 chance of inheriting the PALB2 gene... I got the bad 50% of it. (of course I did)
I knew going in for the genetic counseling that it may turn out to be positive and if it was, what would I do with that information? Did I want to know? Did I want to have decisions to make? I thought that if I have the chance to be PROACTIVE in fighting cancer then I needed to do this. There is so much cancer on BOTH sides of my family. Both Grandmothers had a form of cancer, uncles, aunts, cousins. My one aunt was diagnosed with breast cancer at 40... passed away at 42. She was only 6 years older than me and it made me think that this could happen to me. It WASN'T me, it was my sister. Watching and helping my sister go through her battle with cancer was so painful to watch. I lived 3 hours away and couldn't be with her as much as I wanted to. She lived alone as well. I felt awful for her. Seeing my sister who I love and adore, battle this monster, made me so scared. For her and for myself and family.
Within a week or so of finding out I was PALB2 positive, I also had my Sjogren's diagnosis confirmed. I DO have the disease. Most people don't know too much about Sjogren's. (I sure didn't know anything about it until they pieced all my health issues together) Those who do know about it, think it's just about dry eyes and dry mouth. It is SO much more than that. It affects A LOT of different parts of your body. The fatigue can be debilitating. I don't have energy to do the daily things I usually do sometimes. Pain & pens and needle feelings (neuropathy) all over my body. Another invisible illness that nobody can see or understand. Just a lot on my plate right now. I'm really having a hard time with everything, that's why I came here!!
In these past 3 weeks, after my positive result, I have researched and read SO much about the preventative double mastectomy. Some say that it's too soon to make my decision to have the surgery done. My thoughts.... God gave us the knowledge to help PREVENT breast cancer. If I have that knowledge I'm going to do what it takes to save my life, try to prevent getting breast cancer and not go through what my sister and other family members went through. I know I have a HUGE journey ahead of me. I'm scared. Is this the right thing to do? I mean, I could NOT get breast cancer, right? But the odds are against me...I'd prefer not to sit around and 'wait' for cancer. If I can get ahead of the game... then let's do it! I hope that I will have all the love and support from my friends and family through all of this. God be with me!
I do not think the hardest part of my journey has begun yet. I am currently struggling with everyone's opinions. Some agree with my decision and some disagree. People have their own opinions, I understand that. But that doesn't mean that it makes it easy for me to hear them. It confuses me!!! It makes me doubt my decision. Am I doing the right thing?? I feel like I'm always in a debate about my body. I know they are just trying to be helpful and sometimes their opinion is helpful. Most of the time tho, it's confusing.
My husband, son (26) and daughter (23) don't talk about it unless I bring it up. It's all so fresh and new to everybody. I try to talk to them but it seems it's always a very brief conversation and ends in a slight disagreement. My husband supports my decision no matter what, but doesn't talk much about it. I don't feel my children really agree. I don't want to argue with them.. So I guess that's why sometimes I just keep things to myself. I do feel alone sometimes. I have my own little 'pitty party' for myself once in awhile. Party of 1!
I'm thankful for my mother, sister, and best friends support (even tho my best friend disagrees with my decision). I think my sister has a different opinion than me, but keeps most of it to herself. I think she does this to protect me. She knows personally what it's like to hear so many different opinions and how hard it is to take it all in. I feel she's trying to be a good big sister. Her way of supporting me! I love her so much and am so proud of how very STRONG she is (and my dear sister, if you are reading this... yes... I did say strong!!). I hope that I can be as strong as her going through this journey. This has been a difficult decision to make. It's ultimately MY body and MY decision to make and I hope that my friends and family can support my decision. It's already hard enough to deal with all of this... I just need you to be there for me. Talk to me! Help me make it through this!! I'm counting on you.
I haven't actually done it all yet as my journey is just beginning... But what thing would I do different? How about not test positive for the PALB2 gene!!! (I think I'm funny) If only I had a magic wand.
I thought this was very helpful for me personally to talk about this, to vent, to share my feelings with everyone. This is a great place to see other people stories... people who can relate and have gone through this journey or are going through this journey.