BRCA1 positive

Hello BPos24  I have just come across your post and an so sorry to find you have not had any replies.  I can't give you an answer as I have a different cancer. however by me replying, your post will return to the top of the forum and I hope be seen by other Community members and you receive some replies.

Are you aware of the forum - BLOKES WITH BREAST CANCER  and there is also a blog Supporting men with breast cancer in the Online Community  just click on the links provided to read these..

if I can do anything else for you please don't hesitate to contact me.

Best wishes - Brian.

Hi BPos24

I'm so sorry to hear your battle with BRCA1, it's so unfair on you.

I am female with a recent diagnosis in November 2023 of BRCA1 with no family history. I am on my last cycle of paclitaxel, carboplatin and immunotherapy before starting EC next month. Surgery is due in June. It's been a massive shock and knowing that my son has 50% chance of having it too is devastating.  I'm still in the process of breaking the news to both sides of the family because it's not known where it came from. My parents separated when I was young so there are many more sprigs in the family tree to track it down. 

My appointment with the geneticist is on Friday but I haven't been told anything further as yet with regards to treatments after preventative surgery.  Knowing that this BRCA1 will be with me forever isn't much fun.

I hope your journey gets easier and you find out more.

Hello BPos24, I’ve just come across your post. I too am Brca 1 positive, I identify as female and am unsure if there are other men who have shared in this discussion forum. I hope if there are they will come forward and reply to you. I’m sorry to hear of your breast cancer diagnosis and then finding out your higher risk. I’ve been getting MRIs and mammograms each year to ensure any breast cancer appearance can be caught early but after 8 years I want to have the mastectomy and reconstruction done.

If you have any questions please ask, people who share here I’ve found are understanding and non judgmental. I am around but might take a day or two to answer. How is your chemo going?

Hugs,

Marie

Hi Rin,

I found out last week that I have tested positive gor the BRACA1  mutation, and by the sound of it I'm on the same treatment regime as you, with another 5 weeks to go before I start my 4 cycles of EC. It's a shock to find out about the gene as I also don't have any family history of it, and worried about the consequences if my children have it too. I've not really discussed my options beyond chemo but I'm being referred to a surgeon who can go through them with me, and the genealogy team who hopefully can help my siblings and children decide their next steps. Long way to go but hopefully things will make sense as we go along. Feel free to keep in touch and share any worries or info! Sending love z

Hi JJ42

Thank you for replying to me with your scary story too.  It's reassuring to know there are actually a lot of us out there going through the same thing.  Our own battles are very personal to us but it's warming to know there are people like you who know and understand EXACTLY what I'm going through. 

How are you coping with treatment?  Do you have a good support circle around you?

It's all actually a complete shock.  I cannot believe it's happening and that BRCA1 is now going to be the bain of my life mentally because as much as I hope this is the end of it, I know it's not going to go away.  

I am so, so grateful it's manifested in me and no one else first and it means that I can warn family so that they have the option to get tested. My mum lives in Spain and it'll cost her about 1000€ to get tested. My sister has to have counselling before she can get tested and she has twin daughters we're worried about. That doesn't even stretch to my dad's side. He passed away from lung cancer that had spread in December and he passed away before my diagnosis so he didn't have any testing done. My sister-in-law is pregnant and I have to break the news to my brother and my other brother has 4 children. Not to mention all my aunt's, uncle's, cousin's etc.  It's going to be conversations I wish I never have to do.

Let me know if you want to know what the geneticist says to me on Friday.

Hi, yes it was a total curve ball; my oncologist had to ring my insurance company to have the gene test authorised as there was no family history at all.

I'm lucky to have my family who are all fairly close by and amazing friends who are giving me such good support, how about you? 

It's definitely the guilt about putting the rest of the family through the tests that is the worst thing, if it was just on me I'd deal with it. I have a sister, 3 brothers, parents and nieces and a nephew, plus my own 2 kids. For the adults I guess it's an early warning system for them and they can all take whatever measures they see fit, but the kids will have huge decisions to make if they are +ive. I'm a one step at a time person though, so will get through chemo, talk to the people I need to talk to and go from there. Apparently there's a 3 month waiting list for genealogy where I am so if you are happy to share the gist of how you get on please do!

Hope you sleep OK tonight  I'm struggling a bit! 

Keep in touch , Jen x

Hi Jen

I don't know how this platform works but I think I've sent you a friend request for us to keep in touch?

Sorry to hear you're having a rough evening.  The dark mornings and evenings are hard when there's not much light on bad days.  Are you having positive times too and arre you sleeping ok?  Do you have something to look forward to?

I had a fabulous positive last Friday at my breast screening appointment,  the doctor couldn't feel the cancer anymore which is amazing.  That's my sign that all this chemo is working.  A smooth in all the rough.

It's good to hear you have support.  I know sometimes it's hard to talk to your nearest and dearest though.  I've surprised myself at opening up in this forum because it's not normally "my bag".  I think knowing that there is common ground has been eye opening.

I've got a really good circle of friends and my other half is being my absolute rock. He's got an amazing family who are very supportive of the both of us.  My sister lives an hour away but she has been taking me for some of my treatments too, bless her.

I was running 4 days a week up until treatment started and live a very healthy lifestyle to, you know, help keep cancer away yada, yada, yada.  This week I can't even cope with the 4 flights of stairs at work. My haemoglobin is too low so treatment was cancelled this week and I may need a blood transfusion.  I was kind of thinking I'd face something like this in my latter years of life so to get it in my mid-40's is side-swiping.  

How are your children coping with your diagnosis?