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Breast Cancer Haven
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Hi I was diagnosed with triple negative breast cancer last January 2017. I had a lumpectomy followed by 8 rounds of chemotherapy and 20 sessions of radiotherapy. Have had my first mammogram and was clear😊. Is there any one out there with TNBC?? I haven't met anyone who has it. Would be good to hear from anyone.

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Hi there

Welcome to our lovely forum! I didn't have TNBC but I'm sure someone will be on soon to share their experience. I just wanted to congratulate you on your recent clear mammogram, grear feeling isn't it?

I hope you get out of this forum as much as many of us do, the advice and support is invaluable. xx

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Hi Dawsa. You will find a few of us on here. I have blogged my way through this so if you want to have a read feel free. It may help you in your journey. elainemurphy66.blogspot.com

I was diagnosed on 2 Oct 2015. 18 days before my 49th birthday. I am now 51 and have retired early. Life is more sedentary however not in a boring way.

I hope you find comfort in the blog its been a hell of a ride.

Take care and remember to keep your good side out. Positivity is half the battle.

Lainey66 xxxx

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Hiya yes I had triple negative breast cancer but a very rare one. It was in fact lung cancer in my breast!! I had chemo followed by lumpectomy and then radiotherapy. The chemo I had was for lung cancer and it shrunk the tumour thank goodness. I’ve had no one else to compare with. There has been so few people in the world who has had what I had.

That was in June 2015 and I’ve been clear two years!

It certainly changes you although I’m still working in London doing four days a week now.

Just trying to stay positive.

Gill Twist

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Hi Dawsa

Welcome to the forum 💐

I was diagnosed with multifocal TNBC so l had to have a Mastectomy to catch the multiple DCIS’s that had started to appear, l found my lump in June 2015 after a clear routine mammogram in the April 2015

It was very aggressive Stage 3 Grade 3 but hadn’t spread to my lymph nodes, thank goodness. My surgery was followed up by FEC Chemo, radiotherapy was not necessary as I’d had a Mastectomy & there was no node involvement.

There are quite a few of us TNBC Gals on here, so hope that comforts you & any questions just ask away, I hope you’ll see you’re in good company.

Best Wishes

Mrs N 💅🏼

PS Good News on your first clear Mammogram, I’ll be having my year 3 in June🤞

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Hi Dawsa,

Great news on your mammogram, I hope you are feeling really well. I too was diagnosed with TNBC last January 2017. 2017 was a hell of a year. I am now clear. My first mammogram isn't until June which is the anniversary of my surgery. I wish you continued good health. Caroline

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Thanks Caroline the same to you too . Did it go to your lymph nodes?

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Dawsa

Sorry I didnt get back to you sooner - I was fortunate to have no lymph node involvement. Be good to yourself . Caroline xx

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Hiya,i was triple negative in march 2016,had chemo,lumpectomy,radio x20-in that order,first 3 lymph nodes removed for testing and luckily it was stopped in it's tracks by the chemotherapy which also stopped me in my tracks.(i really suffered with all the side effects).My annual mammogram was clear too,it's a relief isn't it-this forum is great for support and advice for you.Welcome,luv Vicky.x

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Hi thanks it's good to hear from you, it's nice to speak to people who have been through the same thing. Apart from your mammogram have you had any other follow up care ? Alison xx

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Hi there Dawsa. I was diagnosed with TNBC in both breasts Feb 2017 and I was stage 3, grade 3. I had chemo, small lumpectomy (for what was left after chemo) with node removal from both arms and radiotherapy. Had my mammogram in the anniversary last month and all was clear. The only thing I’m struggling with now is peripheral neuropathy to the feet and my skin. I’m trying to get back to the gym as this removes the problem from my skin, but it looks like I’m stuck with the neuropathy to the feet for the time being. I’m glad to hear you are clear, it’s always great to hear good news. Good luck and I hope the good news continues 👍🏼💖

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Thanks for your reply it's good to hear how other people are getting on. Glad all is going ok for you. I know a lot of things will take time. All the best xxx

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Hi, I was diagnosed TNBC April 2015. We’re like left-handlers on here. About 10% (and yes I’m a leftie). Lumpectomy, chemo and bisphosphonate infusions every 6 months for 3 years. Have just had my 3 year mammogram and all clear 😊. I did have a bit of a scare a month ago as I was getting stiffness in my back. Had a bone scan and all clear. Radiographer said nearly everyone with BC has a bone scan at some point. I tend to follow another forum on the Macmillan site specifically for TNBC people as anything hormonal doesn’t relate to us. Also the TNBC foundation which is based in USA is a site dedicated to all things TNBC.

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Hi thanks for your reply. Can I ask why you had to have infusions every 6 months,? Had it gone to your lymph nodes? Xx

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Hi, no lymph nodes all clear. Where I live in North Wales just over the border from Chester I think it’s quite standard for TNBC. The bisphosphonate are supposed to stop the cells in the bones from changing. It’s just a precaution. It’s once every 6 months for 3 years.

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Ok thanks, they didn't offer me that. It's good that you have that added protection. All the best xxx

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Hi there

I was diagnosed 2013 July and will be approaching the five year mark at the same time as my 50th birthday so cause to celebrate to be honest at the time didn't think was gonna see this far

I had the same treatments lumpectomy , chemo, radiotherapy

It's taken a few years to actually feel normal and good , although don't think I will ever be same, each year I thought I was great but further on I realised I wasn't as good as I felt the following year if that makes sense

Changed me to a softer each day as it comes person, back on the work roundabout though but try not to let it stress me like it used to and it keeps me in the real world

The only real thing I am struggling with is the decline in sight could just be old age , too much computer or effects of chemo who knows

I do things and enjoy things in moderation, in the early days I read what I should and shouldn't do but on looking back I would say just be you and take each day as it comes , keep the people in your life who are there for you and let others go ,

Triple negative diagnosis was hard and still leaves some worries even now , it's always there no one understands unless they have been diagnosed with it , the negative press and possible outcomes

But it's not all negative and I have a few friends who are years ahead of me

Don't read too much into what everyone else is left with after treatment just take each day and each symptom you get and you will find a way to manage it

It was hard at the time , but time really is a healer be kind to yourself , stay strong and enjoy you

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Hi, thank you for replying. It was great to hear from someone who is that far ahead. Good for you celebrating your 50th and 5 years clear this year. I know it's still early days for me so I do have to be patient, just want to few like I did but I think you are right this is the new me. It makes you see life and people differently. All the best to you xx

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Hi dawsa,

I was diagnosed TNBC March 2017. BC stage 2 , 1 lymph node involved. I had lumpectomy with 26 lymphnode dissected followed by 3 rounds of FAC and 12 weekly doses of PAClitaxel and Carboplatin . Genetic test done and shockingly found out I am BRCA 1 positive without any family history of BC :-( I went for BMX instead of radiation. I am going to do oophorectomy in next month. It's been hell of a year.... Too much in my platter and I am overwhelmed by continuos treatment. Nowadays I can't talk about myself withou crying. May I know your stage or any lymphnode involved?

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Hi Arumana thank you for your reply, I am so sorry to hear all that you have and are still going through. It must seem never ending for you. I do hope you have a lot of support from family and friends. I was stage 2 grade 3 no lymph node involvement, and thankfully brca gene was negative. I have finished all treatment now. I wish you lots of love and luck, and hope soon you will be able to move forward once all your treatments have finished xxx

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Thank you for your wish dawsa. Good luck, love and best wishes for you too. Just waiting to have normal life again ....

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I was treated for triple negative breast cancer in 2003, large tumor but no lymph node involvement. Chemo, lumpectomy, more chemo, and radiation. Recently I was diagnosed with triple negative inflammatory breast cancer in the same breast, no indication of any spread, and I tested positive for the BRCA1 gene mutation. I’m about to have my third infusion of Taxotere/carboplatin which I am tolerating well. My sister in England just completed treatment for ovarian cancer. We have no other family history of such cancers. I don’t know what surgery is advisable for me now with the news about being BRCA1 positive but I suspect it will be more than a single mastectomy. It’s all pretty scary, but my family has been fantastic, rallying to my support. That is a great comfort to me and definitely a silver lining. How are you doing?

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