My name is Amanda and I stumbled across this group on my first visit to bcna site that my breast nurse told me to check out so thanks for letting me be part of the group. I am 32 and was diagnosed in august. Have had double mastectomy in sept, with full auxiliary clearance and tissue expanders inserted... Worst decision I ever made so far, so much pain! Mine was stage three triple neg ductal carcinoma and I am officially this week half way through chemo which has been completely debilitating for me, I have ended up in hospital more then out with severe reactions, then an ruptured appendix and two extra ops, and when I finish this chemo I have another op for skin removal over tumor site then six weeks radiation, then breast implants put in. I have tested pos for the faulty gene brac1 hence the extreme ops. Wow, do I sound like a complete winger now! On the positive side, I have three gorgeous kids... Well most of the time they Are, who are 3,8,9 and a hubby of ten years. Just wanted to introduce myself, hope you all are having a great festive season, personally I have been a wreck as been so emotional and cry every time someone looks at me. Enjoy your night, cheers amanda

Hi, I just wanted to say hello and welcome to the network. We are here for you to have a good old winge! Horrow stories are the ones that give us the most backbone, mothers, we seem to take the worst and turn it round into a positive. Our kids, well, they are the life blood and keep us moving forward ( Oh shit! I sound like Julia!) but truely they are the reason for us being positive and it funnels through to everything we do. I want to say, chin up and keep in there, but they are just platitudes. Instead I will send you a vertual HUG and a shoulder to winge to whenever you want. Take care, Keryn xxxx

Hi Amanda I am also triple negative and 35 years old. Haven't had surgery as yet and about to have my 4 th round of FEC next week. This site is great the people are fantastic and it's full of great support and information. I will be having a double mastectomy after my chemo is finished so I would love to hear as much info as I can about the surgery. I hope your new year is a happy one. Take care Olga

Hi keryn and Olga, thanks for that :) It's lovely to meet you and I'm sending the virtual hug right back to you also. My double mastectomy went really well, managed to save both my nipples, nearly lost one after three weeks but dressed it everyday with vasoline and padding and it survived. As I said I have had constant pain with expanders, ended up going from d cup, to a small b it's all I could cope with, but the fluid pump up were ok, it's just because I've lost so much weight due to being so sick, went from 65 kilos, to 51 in a few weeks and haven't managed to put on weight yet, my body has shrunk so much so I really ache, hopefully will improve when I return to my normal weight and my chest stretches more. My surgeon was great, scars are from bottom of boob toxics corner and have four drain scars under boobs, but didn't have trouble. One of my drains fell out in first week, and was the major one draining lymph fluid but my body adapted and I had to wear bra all time so the support of bra pushed fluid down to next drain site, take all painkillers you can take don't try be hero and do too much, it's pretty draining. Let me know if you think of anything else? X amanda

Hello ladies Firstly let me say Happy New Year and lets hope this is gonna be a healthy and happy one. I was diagnosed in 2007 when I was 36, I met two other women online that were both diagnosed at a similar time to me. They are both triple neg..Sam was 36 too and Kylie was 32. They both carry the BRACA1 gene. All three of us have had bilateral mastecomies, chemo, tissue expanders and now permanent implants. Life is kinda back to normal now or at least the new normal!! so whilst there are ups and downs and lots of tears along the way, in time you will look back and it will be in the rear view mirror and t:he road ahead is good again. I have met many wonderful friends along the way and many of them like the two mentioned above will remain life long friends. My baby was 2 when I was diagnosed, she is heading into her second year of school this year. so d:rop in any t:ime for a chat. Love Tanya xx

Hi ladies | BCNA Online Network

11 Replies

SamzRusty
Member
12 years ago
Hi Ladies,

Not sure if any of you still visit the site or not, but heres hoping.....

I'm Triple Negative & BRCA1 positve too. I had a lumpectomy in May, and have just finished 6 months of chemo. I have a full Hysterectomy booked in 30th Jan 2014 & bilateral matectomy with Lat Dorsi reconstruction 25th Feb 2014.

Just wondering how you're all feeling after the surgeries? There don't seem to be many of us here with the gene mutation.

Thanks, Sam xoxoxox
CatherineP
Member
14 years ago
Hi everyone, I must comment the pain of the tissue expanders is bad!!!! It is so different from just having a mastecomy. It just felt like someone was sitting on my chest. Things we do. I have my op 4 weeks ago and go an infection so am only just going for my first fill up. I don't know what size I will end up, I guess it depends what I can take. Hope you are all getting on OK. Thanks for the help with the tops.

Love CatherineP
Fushiamandy
Member
14 years ago
Hi ladies, thanks for all your replies, what a remarkable, strong and inspirational bunch we have on here. Catherine, I wore button up winglets after surgery and a bra that did up at front as couldn't do bra up at back at all. I also had my mum make a drain bag, so I could just put my drains in bag when I went shopping or moved around the house, just a smallish bag with long straps so it hangs down near your but, for gravity to drain into drains. I have the hysterectomy at end of this year so will be asking your advice then ;) I couldn't put things over my head so shouted myself to five button up winglets from kmart for about ten bucks each, they were heaven S easy to get in and out of. All the very best with your upcoming surgery, think of all you have been through aleady... You are almost at the finish line! lots of love and hugs xo
CatherineP
Member
14 years ago
Hello ladies, it is sad and nice to read your stories I wish they were different! Mine is similar too. I was diagnosed feb 2011 with triple neg breast cancer then underwent right mastectomy, 6 rounds of chemo which was interesting to say the least. I have also found out I carry the BRCA 1 gene. I had a hysterectomy with removal of overies in December and am about to have left mastectomy with tissue expanders. What other helpful hints can you ladies give me heading into this surgery! What is the most comfortable clothes to wear? Thanks CatherineP
CatherineP
Member
14 years ago
Hello ladies, it is sad and nice to read your stories I wish they were different! Mine is similar too. I was diagnosed feb 2011 with triple neg breast cancer then underwent right mastectomy, 6 rounds of chemo which was interesting to say the least. I have also found out I carry the BRCA 1 gene. I had a hysterectomy with removal of overies in December and am about to have left mastectomy with tissue expanders. What other helpful hints can you ladies give me heading into this surgery! What is the most comfortable clothes to wear? Thanks CatherineP
moira1
Member
14 years ago
well. Whinge?????? i think after reading your blog, you have every right to whinge, so welcome to the club nobody wants to be a part of, but we are soooo lucky to have. here we encourage people to come and vent, chat, laugh or cry, and while doing that, we are helping ourselves and also helping others. there are ladies/gents on here at all stages in their journey, so loads of support, which is sometimes just what we need, and hints and tips to try to make the journey a bit easier, so please keep comming back, and let us know how you are doing. here's to a healthier 2012. regards Moira
Tanya
Member
14 years ago
Hello ladies

Firstly let me say Happy New Year and lets hope this is gonna be a healthy and happy one. I was diagnosed in 2007 when I was 36, I met two other women online that were both diagnosed at a similar time to me. They are both triple neg..Sam was 36 too and Kylie was 32. They both carry the BRACA1 gene. All three of us have had bilateral mastecomies, chemo, tissue expanders and now permanent implants.

Life is kinda back to normal now or at least the new normal!! so whilst there are ups and downs and lots of tears along the way, in time you will look back and it will be in the rear view mirror and t:he road ahead is good again.

I have met many wonderful friends along the way and many of them like the two mentioned above will remain life long friends. My baby was 2 when I was diagnosed, she is heading into her second year of school this year. so d:rop in any t:ime for a chat. Love Tanya xx
Fushiamandy
Member
14 years ago
Hi keryn and Olga, thanks for that :) It's lovely to meet you and I'm sending the virtual hug right back to you also. My double mastectomy went really well, managed to save both my nipples, nearly lost one after three weeks but dressed it everyday with vasoline and padding and it survived. As I said I have had constant pain with expanders, ended up going from d cup, to a small b it's all I could cope with, but the fluid pump up were ok, it's just because I've lost so much weight due to being so sick, went from 65 kilos, to 51 in a few weeks and haven't managed to put on weight yet, my body has shrunk so much so I really ache, hopefully will improve when I return to my normal weight and my chest stretches more. My surgeon was great, scars are from bottom of boob toxics corner and have four drain scars under boobs, but didn't have trouble. One of my drains fell out in first week, and was the major one draining lymph fluid but my body adapted and I had to wear bra all time so the support of bra pushed fluid down to next drain site, take all painkillers you can take don't try be hero and do too much, it's pretty draining. Let me know if you think of anything else? X amanda
olga_m
Member
14 years ago
Hi Amanda I am also triple negative and 35 years old. Haven't had surgery as yet and about to have my 4 th round of FEC next week. This site is great the people are fantastic and it's full of great support and information. I will be having a double mastectomy after my chemo is finished so I would love to hear as much info as I can about the surgery. I hope your new year is a happy one. Take care Olga
Keryn
Member
14 years ago
Hi, I just wanted to say hello and welcome to the network. We are here for you to have a good old winge! Horrow stories are the ones that give us the most backbone, mothers, we seem to take the worst and turn it round into a positive. Our kids, well, they are the life blood and keep us moving forward ( Oh shit! I sound like Julia!) but truely they are the reason for us being positive and it funnels through to everything we do. I want to say, chin up and keep in there, but they are just platitudes. Instead I will send you a vertual HUG and a shoulder to winge to whenever you want.

Take care,

Keryn xxxx