Any triple negative survivors out there?

[Whitfield]

Never made it back to work.  Pain too much and other health issues.   Sometimes better to,change life and take that reduced pension.  We don’t know how long we have and we need to enjoy what we have if we can survive on less that would be my choice.  X

[Woodie67]

Come on to the site for first time since I posted my very scared plea for help pre-surgery on this post on 29th January & so pleased to see all the positive messages of support - has really cheered me up after making the mistake of doing Dr Google on triple negative in the early hours last night and scaring myself again stupid convincing myself I’ll be dead in 2 years.. I had my mastectomy - small 7 mm tumour, Grade 2 but hit 6 of 26 axillary lymph nodes. I’m 2/3 way through FEC-T chemo & so far doable although must say my first Docetaxol was tough with longer lasting SE for me than FEC, penultimate one next week so building strength up for that & 3 weeks of rads planned for after my daughter’s wedding in July. My main dilemma in my mind is work & what to do - my surgeon insisted I go off sick in January as she knows the stress levels of my job in the NHS & wanted me to be as healthy & stress free as possible. Now as time goes on am questioning when I should go back and even IF I should go back to the same role or look to try & survive off a reduced early retirement pension given the high risk of recurrence within 3 years. Any advice as to how soon after all treatment ends is reasonable to go back to work - as I feel now I think mentally is going to be the challenge rather than physical?

[Shi]

Icarus 😘😘 so sorry to hear about your mum 👭👭 and hope you are 🥊🥊🥊🥊the chemo have they advised how many sessions and have you got a date for op yet? You can 🤸‍♀️🤸‍♀️🤸‍♀️It’s ass again beautiful you are 💪💪💪💪 car 👍👍👍good to know so we can all keep hope and ❤️❤️❤️ Strong in our lives, thank you 💕💕✨✨✨Shi xx

[car]

I was diagnosed as triple neg. stage 3 in 2009.Had 6 treatments of FEC followed by radiotherapy.

I am now 8 years in remission, was told it would probably return in 2 years so ther is hope !

[1852]

Sorry you are having to go through chemo again did you only have lumpectomy last time . I not surprised your emotions are all over the place losing your mum with same thing . Take care of yourself .💐🎀 DEN

[bel]

Oh icarus, i’m so sorry to hear about your diagnosis and that your loss of your mum. That's a lot to be dealing with. Just wanted to wish you all the best with your treatment. As you know, it's not an easy ride but you can and will get through it. Love bel x

[Icarus04]

Just been diagnosed for a second time with triple negative. Chemo starts soon and then I've opted for a bilateral mastectomy. Last diagnosis was 2010. Also just lost mum mum to secondary breast cancer so emotions are all over the place and this hasn't helped much but determined to remain strong and get through it 😊

[Shi]

Boogiebrat 😘😘thank you, jencat 👭👭we are 💪💪💪and i’ll Always have hold of your gold hot pants 👍👍💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Ladies jencat and I are from the Oct 🚂so I’ve just finished treatment and jencat nearly finished now too and it’s ❤️❤️To know you are all here, thank you 😘😘💕💕✨✨shi xx

[Jencat]

Just wanted to say thank you boogiebrat and Den for your upbeat posts. I was feeling a little down today so it was good to read them x

[boogiebrat]

I was diagnosed with stage 4, triple negative, invasive ductal carcinoma, I went thru 8 weeks of chemo, left breast mastectomy and then radiation. I am proud to say, on 4/20/2018, I will be attending a Celebration of life ceremony, for all of the 5 year survivors who were treated at CTCA. I just wanted to say, don't loose hope, make yourself a priority, make the health choices that will benefit you most and please, never never give up! 

[1852]

Hi everyone it's good to hear from you all good luck for your mammogram  bumblebee . Hope your appointment goes ok pam . Take care DEN

[bumblebee63]

Hi everyone, not been here for a long time, occasionally have a quick look. I was diagnosed april 2013, lumpectomy, chemo and rads. My 5 year mammagram is due in 2 weeks so starting to feel a bit anxious. Waiting for hip replacement now, had spine fused and a mini stroke event butstill working fulltime! As long as the c stays away I'm fine! I was part of the july junkies 2013 

[Buster]

Thanks, for the info, Colista, I had no idea tumeroc thinned the blood.Take care. xxx

[Warcol]

Hi Anne and Jane
If your taking aspirin please advise your medical team about taking turmeric as this is also a blood thinner and you may be thinning your blood too much if taking them together! Xxx

[Whitfield]

I’m on the Triple Negative One.  Px

[Marina]

Pam so good to hear from you. Which Facebook site do you use??

[Whitfield]

Pam here.  Sorry I’ve not been on this,site much recently.  I do the Facebook site now.

Im still struggling with l7mps and bumps and waiting for Marsden appt and still have pain.  That said 8m still around.

hope you guys are doing ok?

pam x

[1852]

I am 4yrs down the line from RT mastectomy and chemo , I have a few problems but am doing ok and getting on with life , I don't do Facebook and wish more came on this site to keep in touch welcome to all newcomers if I can answer any of your queries I will be happy to do so .DEN

[Marina]

Welcome Mooks. It's a shame this site no longer has much activity, I guess people prefer Facebook but I find that quite impersonal.
Any news of Pam??

[Mooks]

I have just requested to join!

[Marina]

So good to hear positive stories. I'm still counting to reach my 5 yr mark, but feeling positive.
Has anyone heard from Pam, she used to write so often on here.
Marina

[bel]

Thanks for this, MAM 1959! I was also diagnosed in 2002 - tho triple neg. and have no recurrences since, tho I still occasionally worry about it coming back as secondaries, so it is very reassuring to hear what your oncologist said. Years after my diagnosis I discovered I was a BRCA1 carrier, so I too had a (preventative) double mastectomy & reconstruction at the Royal Marsden just over a year ago, and I cannot sing their praises high enough. My new breasts look great & the whole experience was so much less traumatic than I thought it would be.love to all, bel x

[MAM1959]

Just found this thread so excuse me for being late to the party.   I was diagnosed with ER+ primary in 2002 and then triple negative primary in 2014.  6cm tumour in breast and 5mm in lymph nodes grade 3.   Thanks to the wonderful Royal Marsden I am still here.  Chemo (carboplatin I cant take the Taxol drugs as I'm allergic to them) completely eliminated the tumours over 6 rounds nothing left by the time I went for double masectomy.   Followed by 3 weeks of IMRT radiotherapy.   4 years later and no recurrence.   My oncologist told me that he does not know of any TN patient who has had a recurrence after 5 years.   if recurrence happens then usually in 2-3 years.   Not the same for ER+ which can recur up to 20 years later.   So 5 years is the big mental milestone.  I can think the mental side of treatment and survivorship is just as hard as the physical side.  But there are some great counsellors out there for the patient and their family.

[AnnDaw]

Hi Colista lm taking part in the aspirin trials and it's for 100mg 300 mg or the placibo and of course I don't know which im taking. I also take D3 and turmeric but the turmeric I take is is a organic curcumin root  one per day capsule. Im 8 weeks post reconstructive surgery with tissue expander which gets topped up fortnightly. Apparently they are stretching my skin as radiotherapy made it tight. Still got  a way to go yet but  very happy to have a boob back. I hope were doing everything right to keep it from coming back. I'm 2 and a half  years post diagnosis and it all seems just  like a bad memory now. Anne xxx

[Buster]

Thanks, Colista. I was going to ask my GP first. She was the one that said I was okay to take tumeric. Best wishes and thanks again, Jane xxxx

[Warcol]

It used to be advised that taking baby asprin 75mg was enough however the aspirin trials have 3 options I believe which is a placebo, 150mg and 300mg! After discussions it with my oncologist she advised to start with 75mg to make sure there was no effects to the stomach lining! I now take 150mg and I have no issues! I would always advise to discuss with your medical team before taking it unless your on the trials xx

[Buster]

Thank you for your story, Colista. It helps so much to hear positive stories. I hope you don't mind my asking, but I wondered what dose of Aspirin you take. It's something I'm interested in trying.

[Warcol]

Hi everyone
I don’t come on here very often but in the early days is was invaluable especially the threads for chemo! I’m 2 years free after having a 3.8cm tumour and multiple node involvement stage 3 grade 3! I achieved a pcr and take d3, aspirin, turkey tail and tumeric on my food to help keep it from ever coming back! I’m also the admin for Triple Negative Warriors Uk on Facebook which is a very active group should any of your ladies wish to join! It’s a closed group for sufferers or survivors of tnbc and offers support, advice and friendship! Love Colista xx

[Janet55]

I have been diagnosed with TNBC They said it’s metaplastic and quite rare. I am going in for wide local excision on Wednesday next week. My consultant says that it is very treatable but I am very anxious as the time is passing.  There were no nodes showing on scans or mammogram so hopefully the ones that are removed will still be clear when surgery comes. I will be having chemotherapy and radiotherapy and it seems such a long road to go down. I’m struggling with that too. 

[AnnDaw]

Hi Catz I'm sorry to hear that you are still so anxious. There is loads going on out there re-:trip /neg and I'm in a clinical trial for aspirin and research has shown this to destroy trip/neg cells in mice..I have a friend and one of her clients has a son who is a oncologist in London and something is on the horizon for us ladies so have hope.Meanwhile I feel well and I just keep taking vitamin D3 and a organic turmeric root capsule daily and hope for the best.. I did opt for reconstruction which I had 7 weeks ago. Our diagnosis and treatment plan was the same except  my tumour was 5cm so smaller than yours but the main thing is that they are long gone..I hope you can take some reassurance from this post and think of all the ladies who are long term survivors. We will be those ladies too. Anne xxx

[Catz]

Hello. I was diagnosed with right TNBC 8cm tumour Feb 2014. I was 53. Had 6 rounds of chemo FECT , bilateral mastectomy with right axillary clearance and left sentinel node biopsy. Lymph node negative. 15 rads over 3 weeks
No reconstruction.
Now 4 years since diagnosis but I’m still so anxious. My girls are still young 16 and 17 and it worries me that I am nit going to be there for them, being a single mum. I made the mistake of reading extensively on the internet and the fear remains with me.
I know I am being negative and should live life to full. But feel I am just waiting for it’s return . Life seems so linely

[Jill1998]

Great to hear such positive news Sl !!

[Slcarrey]

Today is 5 years since my diagnosis and I’m still here, cancer free and an extra child in for good measure despite being told I could have any more so hang on in there it’s beatable. Keep positive, you can do this!! Xxx

[Unicorngirlmummy]

Hi woodie, sorry to read of your diagnosis. I toknhave TNBC. I had a mastectomy in October & currently halfway through chemo. Although none of us want here, the waiting bit is the worst. Once you start treatment you feel more in control. The operation wasn’t anywhere near as awful as I thought it would be. Good luck with your surgery & I hope you have lots of lovely family & friends to give you some extra love xx

[AnnDaw]

Hi Woodie67 I'm 57 and had triple neg b/c. October 2015 had right mastectomy followed by fec-t chemo then lymph nodes cleared April 2016 and 15 rads. At first it is like a nightmare but once active treatment starts things get easier. Try not to worry too much about your op. (Is it tomorrow? ). I found myself not to be in pain afterwards just a bit tender and uncomfortable and not half as bad as I had imagined. The chemo is doable and  like 1852 says join the chemo threads when the time comes. As I said my journey began over 2 years ago and now its all just a bad memory and I don't worry about the cancer returning even though I know that's possible. Im living life exactly as I did before. I had LD flap reconstruction 6 weeks ago using muscle and tissue from my back. It was a 4 and a half hour op and I'm fine. I'm so trying to reassure you that all will come good for you. We are all afraid of the unknown and I find it's never as bad as the fear. Anytime you are worried or needing answers someone will be on this site to support you. I don't post on here nowadays cos as I say life returns to normal but I do look out for new ladies like yourself on here hopefully to support you. When you wake up from your op your cancer will be gone. Love Anne. Xxx

[1852]

Hi woody sorry you find yourself here your head will be all over the place at the moment .i had RT mastectomy in 2014 no lymph node involvement .my lumps weren't found on mammogram done 6months before I found them .i had 3doses e/c and 3doses of tax it is not easy but if you listen to your body and take medications it is doable . Good luck for your surgery hope all goes well . When you start chemo I recommend you join ones going through it at the same time ,I found the support helped 🎀

[Woodie67]

Hi - am 50 and diagnosed triple negative on 22/1 & am going in for right mastectomy & axillary clearance in 2 days. I’m so scared - I only found out due to noticing swelling in armpit on Xmas eve - they found a 7 mm tumour in my right breast which wasn’t there on my mammogram in September, the surgeon still can’t feel it & nor can I! Two lymph nodes involved under my arm &MRI picked up one internal mammary node that looks positive. Having 18 wks chemo then radiotherapy too after the mastectomy. My arm has started aching now like the nodes are pressing on a nerve & Im panicking the surgeon won’t be able to clear them and it will spread like wildfire through me. Had a Preop Assessment today & I just broke down on the nurse. I’m really struggling to stay positive today.. any words of encouragement gratefully received..

[Kaicorie]

Hi just popped in don’t come on much is so quiet on here. I’m on the Facebook forum it’s called triple negative uk, there are a few different ones but I find this the best one, It’s a closed group. Good luck xx

[Sdennis18]

Diagnosed grade3, stage2 ( 3cm tumour, 2mm from chest wall) in 2003 aged 58. Mastectomy, fec chemo, radio on 2 sites. I am still well with no recurrence despite poor prognosis.  I visualise, meditate,walk and do yoga each day. I am not overweight and try to eat healthily but not vegetarian or organic diet. I try to live each day to the full.  There is hope and the latest research on tnbc is promising. 

Should I consider removal of other breast and ovaries? How often should I ask for a mammogram? I have no follow up consultation any more.

Trust this gives hope to other sufferers - it is scary!

sue

[Current bun]

Hi I also have tnbc I have had a mastomy and awaiting chemo ,having gemcarbo,I was first diagnosed in 2006 all I can say is keep positive ,I'm a little bit frightened as it's my second time,but I have lead a normal life and enjoyed every minute ,keep strong and think of the future,take each day as it comes xxx

[Dee1945]

  I have notice mention of the Facebook page before. Is it an open or closed page? and what is the name? Our daughter is a two time TNBC survivor 5+ yrs out not from the first diagnosis. Double mastectomy after the second, 2 1/2 years ago. Only a few lymph (6) nodes removed the last time. 

  I really appreciated the support from the long term survivors, it helped me give encouragement to our daughter on those days when things looked dark.

  Thank you for your support for us and for those who write in looking for that reassuring hand. She is doing well and is happy now and I will be eternally grateful..

Dee

[Jill1998]

Welcome to the forum Daniela , sorry to hear about your friend but good to hear that you are doing well and enjoying life .Best wishes Jill.

[danielabright]

i’ve never posted before. but always read these blogs. i’m almost 3 years 10 months since diagnosis. stage 3 TNBC at 29 years old. was living in usa at the time so treatment may been different.
lumpectomy, 4 rounds AC 12 rounds taxol. lymph nodes removed. 35 rounds radiation. intense, but make the most of everyday since treatment.
i feel good and healthy.
found out today my usa friend who had same as me and went through it together she was 3 months behind has found nodules in her lungs, so feeling a bit anxious and sad. it never goes away these thoughts even after this long. hope to connect with some uk people - we’re in it together xx

[1852]

Hi everyone it's very quiet on forum take it others are on Facebook . Just popped on to say hope 2018 is a good year for you all. I Am 31/2 years from diagnosis and just finger end and toe tips perifral neurothropy am getting on with life .

 Best wishes DEN

[Marina]

Pam I have read that Gingo Bilboa supplements are good for tintinus.

[Marina]

Wow Lucille thank you so much for that positive news. I am a year a half out of treatment.
Happy New Year to everyone.
Marina

[Ali S]

Thanks for sharing your story Lucille. It's reassuring to hear that there are long term TN survivors out there x

[Lucille]

I was diagnosed Jan 1998. Triple negative 6cm. I was 37 with 2 daughters 4 & 18 months.
I had chemo FEC 2 cycles until hospitalised with neutropenia & Sepsis. Had surgery 6 months later (lumpectomy)then radiotherapy for over a month. I have had no reoccurrance.
In 2008 I had a genetic test. I am Braca 1.
I have subsequently had my ovaries removed.
I live life to full and accidentally came across this site. I thought I should let you know some of us are still here and having a great time. There will come a day when you will not think about cancer

[1852]

Sorry can't help with node involvement just wanted to say good luck with treatment ,I m sure someone will answer your query soon DEN