Forum Discussion
BRCA2 Just Diagnosed
"How are you?" I am asked at least once every day. The answer comes well rehearsed, "I'm good thank you" Sometimes it's true, and then other times like this past week, it's not. When you've come to the end of cancer treatment you realise you have been in survival mode from day 1. You've mentally prepared yourself for the time it was going to take from diagnosis to final day of treatment to fight, be strong, cope, have faith and keep going. It's just like running a marathon. You mentally prepare for the distance it will take to reach the finish line. No matter how grueling, you manage to put one foot in front of the other and keep going even though your legs feel like giving in. You are in so much agony but because you've prepared yourself mentally for the distance you push on because with each step the finish line draws nearer. When you finally reach the 'end' of the race you exhale a sigh of relief and collapse in a pile of physical and emotional exhaustion. You have nothing left in reserve, you are exhausted and done. You've finished the grueling race and now you look forward to recovering and for your tired achy body to finally rest... Now imagine the race official telling you to get up and keep going. Telling you, you've been mistaken, you haven't finished yet! When you ask how much further?, he says "sorry not sure, just go untill you reach the end"..... That is how this past week felt like after being told I have the BRCA2 gene mutation. I've come to the end of what I thought was the end of my marathon. I had nothing left in reserve. I've only just picked my life back up, I've just started to see little glympses of 'me' returning again and was back at work 1 week when suddenly it all got brought to a screeching halt. I was not mentally prepared to be told that my marathon aint over and I had nothing left in the tank. Now I will have to come up with a new plan again, one to help me pick up the pace again. I have fear breathing down my neck again and with no strenght left I have to find some hope again to keep going. It's tough, it's challenging, it's a marathon. If you ask me how I am, my honest answer this week is, 'I'm really struggling'. If you ask me again in a week or so my answer will probably be, 'I'm running a marathon'.
20 Replies
Oh Ruth, I am so sorry that you find yourself going through all of this. I had to quickly look up Lynch Syndrome (I didn't know what it meant). That must be so worrying for you. My uncle died of stomach cancer (can be linked to Lynch syndrome I see). I think too my BRCA2 gene is from my dad's side, so wondered if my uncle had BRCA2 and if that is why he ended up with Stomach Cancer. You just never know what lies ahead but at least knowledge about these disorders/genes gives us some power. That goes for your daughter and granddaughter too, where they can be proactive in keeping a good eye on themselves and extra care. This website has been so valuable for me with regards to information and just that common bond that you refer too with other who 'gets it'. All the best with everything you still have to go through and may you be filled with a renewed hope and peace and all fear be driven away. Huggles x
Hi Ne, I feel for you as I know what you are going through after having an early hysterectomy. My Daughter and Grand-Daughter also carry the BRACA 2 gene and my Daughter had a hysterectomy last year. I also had a hysterectomy and a bi-lateral masectomy and even though I have my name down for reconstruction, I'm not sure if I'll go through with it. When I tested positive to Lynch Sydrome, (my Father died from Bowel Cancer and my Brother has Bowel Cancer), I was gobsmacked as I thought I'd be okay as I already had BRACA2. It feels like it's never ending at the time. People do not understand what you are going through unless they have been through it It is good to have this site where we can be ourselves and say what we are feeling. I hope everything goes well for you. xxx Ruth
Hi Ruth. Well done for starting a support group and for the work you do in your community. Trooper I'd say!
Ive since had my full hysterectomy and the other breast removed and surgical menoupause without HRT isn't fun Ill tell you that! Night Sweats, hot flushes...its been my life since last November. I am due for my final reconstruction surger in a week. Finally getting rid of the expanders.
Thanks for taking the time out to respond. Hope you are have a fabulous week. hugs
Hi NE. So sorry I have not been on here for ages. I hope things are getting easier for you. I have had a lot of health problems (not related to the cancer) I have stated a support group in my local area and that is going well. I am also cooking for the community kitchen and it keeps me busy as well as looking after my Grandson but it makes me feel I am doing something useful. Now I have got back onto the site I will try to keep in contact. Regards Ruth
Dear Ruth, wow!!! What a testimony of persistence and survival. I am so sorry that you had to loose your mum and then to be diagnosed with the same disease that took her life. And what an incredible story, you had so much surgeries and must have felt like your body was no longer your own. What encouraged me the most is the fact that you have come so far and that you are still here supporting others like me with your testimony. It sure sounds like the preventative surgeries have helped save your life. Thank you for sharing your story with me. I am due for my hysterectomy this coming Monday. I feel more empowered now. Blessings x
Hi Ne, I have just read your messages and would like to make some comments. I was diagnosed with Invasive Breast Cancer 7 Months after I lost my Mother to Breast Cancer. I had conservative surgery and a wide excision, then 6 Months of Chemo and 6 weeks radiation followed by Tamoxifin and the Arimidex. Then I found out that I have the braca2 gene and had my ovaries removed. Later I had a full hysterectomy and last year, I had a bi-lateral masectomy. I also found out that I have inherited Lynch Syndrome ( another gene mutation) and now I have to have yearly Colonoscopies. But I am a survivor and I am happy to say that it is nearly 16 years since my cancer diagnosis. I am grateful for every day and I am so glad that the treatments are always improving. I know what you are going through at present, but there is light at the end of the tunnel even though it doen't seem that way at the time. All the best in your journey. xxx
Thank you for this post. You articulate so well the emotional consequences of the treatment process.
Now that is empowerment! Fingers crossed by this time in a fortnight you'll have had your scan and results and you'll be breathing easier.
I've done just that! Iv'e just made an appointment to see my BS next Tuesday and will demand a scan on the achy breast not waiting for February to come by. I want them to look at it straight away, afterall it's been two weeks of pain and she did say anything that I cant sort out with panadol within a week is worth checking out. I do need peace of mind because I had a very aggresive cancer and now with BRCA2 thrown in the mix, I am not taking chances. We can have so many drs in our care teams but in the end we can't just rely on them we have to rely on our own instincts too.
Different doctors seem to have very different opinions. My oncologist is awesome but cautious and not in a hurry as she wants to give you time to heal, like yours. I'd probably still be waiting for my hysterectomy if she had of done the referral. When I saw the Onc in July she said she'd see me again in Sept and we'd discuss having my ovaries removed and any genetic testing results. But my breast surgeon on the other hand likes to get things done, she understands our finish line obsessions, I'd told her that the Onc was doing the referral next appoint but the BS just said 'no, we'll do it now'. By the time I saw my Onc again in the Sept I had already had the hysterectomy. I had a 5 week gap between hysterectomy and mastectomy and while I struggled a little by the 3rd general anesthetics in 5 months the rest of it was manageable. It was also my BS who sent me for a 6 months post diagnosis mammogram and ultrasound - couldn't do MRI due to the expander and Onc was happy with just bloodwork. I'd stand your ground on having a scan, there is a lot to be gained from having peace of mind.
I'll certainly stay in touch - only a few more months and then we get to start our new normal. x
