66.5K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Any triple negative survivors out there?

Janesi
Member

Re: Any triple negative survivors out there?

I was dx 2 yrs ago with TNBC - underwent MX with node clearance - 11 out of 25 removed were cancerous. I had 6 chemos 5 x fec and 1 x tax (couldn't take tax, ended up in hospital) followed by 25 radiation. I am still here, obviously but very depressed. Cannot get out of my head the dire warnings I was given during treatment - you are at high risk of it returning in 1-2 years.
I am seeing a rhuematologist tomorrow to see he can get to the bottom of the extreme bone/joint pain that I have had since finishing treatment 16 months ago.
It is good to read such positive stories - I thought by now I would be 6ft under.

Bevlaar
Member

Re: Any triple negative survivors out there?

Hi Kat.
Yes I was diagnosed triple neg bc in 2005. Grade 3 but no node involvement. 2.9cm tumour. Clear margins. I had lumpectomy followed by 6 x chemo and rads. Everything was fine until Aug 2009 when my mammogram picked up another 1cm tumour in same breast under my lumpectomy scar! But this was a new primary which also turned out to be ER+ this time.
I had mastectomy and then started on Tamoxifen and have been absolutely fine since.Have since had reconstruction with nipple tattoo in Feb 2011.
I'm 8 years on from the first and almost 4 years from this second one....so a twice survivor! Don't be too pertubed by what you read on the net about triple negative cancers. Everyone is dfifferent.
I'm sure you'll do fine. I also have 2 friends who were triple negative. One is now 10 years on and the other 12!
Good luck with everything 🙂
Bev xx
Guest user
Not applicable

Re: Any triple negative survivors out there?

Not been on here for a long time but I wa s diagnosed with Triple neg in December,2010. Had wle no node involvement. N
Had 3 fec 3 Tax and 18 radiotherapy. treatment finished 2 years ago next month. My cousin is now 7 years finished treatment after same treatment but with mastectomy.
I've been absolutely fine but since retired not having young family or having to get back to work it is much easier for me.
In fact we formed a group locally and still meet for lunch regularly in Glasgow. We now have to go to a larger restaurant there are so many of us - some newly diagnosed and some old hands- not old in age necessarily!
Good luck with your journey everyone,
Margaret xxxxxx
Morwenna
Member

Re: Any triple negative survivors out there?

Deb,

Try not to be anxious about the scans. If anything it should set your mind at rest that they are checking you out. Likely it is just routine follow up as you don't say that you were having any symptoms that would suggest recurrence?

I am just over halfway through my chemo, but I had to have a spiral CT recently because I developed dvt (thrombosis) in my leg and they were seeing if the clots had spread to my lungs. They had, which did not surprise me, but I was very relieved to see on the report that there was no sign of mets, and the nodule on my lung (which was spotted on my pre-treatment scan, but of undetermined nature) was unchanged in size and appearance, so I am hopeful that means it is B9!!
Guest user
Not applicable

Re: Any triple negative survivors out there?

Everyones comments on here are amazing, some scarily honest but still admirable.
My mum has just been diagnosed with TNBC at 48, she is only on her 2nd lot of Chemo - FEC. she has 3 of those then 3 of a different kind, but the cancer has already got a lot smaller so feeling positive. Although they say she will definitely still be having a masectomy and radiotherapy. As soon as she is ready i will definitely point her in the direction of this thread just so she can see all of your amazing stories and know that she isn't on her own. She isn't quite at that point yet though as really struggling with treatment and getting her head around the whole thing. This site is certainly helping me understand more of what she is going through.
You are all fantastic women and I wish you all very happy futures 🙂
debbie_t
Member

Re: Any triple negative survivors out there?

hi eat more cake,

I know exactly how you feel. The fear of reoccurance and spread is overwhelming most times of the day. I am now taking anti anxiety tablets which have helped me a little, the doc said it's 20% tablet, the rest is up to me.
I try and say every day is a blessing and instead of thinking about the worse scenario (which we have no control over), we should embrace the miracle of a new day and make the most of it. None of us know the future.
Its really difficult to cope some days and they are just a blur, I am nearly 1 year since diagnosis and the ride has been really difficult, I have come a long way though since then, had surgery, axilliary clearance and lumpectomy (4/12nodes affected) chemo Fec T and rads x15 plus 4 boost. When I think of how far Ive come I am proud of myself.
I do try and get out for a walk most days, that clears my head

Just try and think of the new day as a blessing and try not to worry about the future, as none of us are able to see that. We are all survivors. Take care and post to me if you wish.
big hugs
Debbie
xx
debbie_t
Member

Re: Any triple negative survivors out there?

Hi there fellow triple negs
. I was diagnosed last may. Grade 3 4/12 lymph nodes positive 😞 had fec t treatment 15 rads 4 boost. Really chuffed to get through all my treatment And felt really happy as hair growing back. felt better so treated my self and partner to new york trip but theday I got back a letter arrived from the hospital asking me to have a ct scan again, abdomen, thorax and pelvic contrast( had one before chemo last July) this was out of the blue, not mentioned previously as I would have prepared my tortured mind for another one. This has totally thrown me. I phoned the hospital to get some tips of explanation but nobody rang me back so now I fear the worst. Has anyone else been for ct scan before and after treatment? I'm under salford royal/ Christie. Don't know if that's just their standard practice. Would really like to hear anyone else's post treatment stories please.
Big hugs to everyone in the pink army
Deb
Xx
rosie28
Member

Re: Any triple negative survivors out there?

hi Im a two year and three month survivor from tn bilateral breast cancer which was grade three but thankfully hadnt spread to my lymph glands.I was finally diagnosed properly when I was twenty four and nine months pregnant after initially being diagnosed as having a fibrodenoma in one breast nine months before!Unfortunetly I have a strong family history of breast cancer as my mother and aunty both passed away from breast cancer in their early thirties.I had genetic testing last year and discovered not very surprisingly that I carry the faulty BRCA 1 gene.I always worried that I did so wasnt too much of an issue for me but a huge worry for my two young daughters, who are only five and two.
A week after my baby girl was born i started eight cycles of chemo , sentinel biopsy, double masectomy with imed recon using tissue expanders and twenty five rads in 2011.Talk about a busy year!Mentally and physically I feel like Im only getting back to "normal" lately as Ive had a few scares along the way.

Jo_BCC
Member

Re: Any triple negative survivors out there?

Hi Mistyr123,

Welcome to the BCC discussion forums where I am sure you will find good support from others treading a similar path to yourself. To help you I have put below links to a couple of BCC's publications which you might like to read. Our helpline team are at hand if you find you would like to talk to someone in person away from family and friends. Calls are free 0808 800 6000 lines open Mon -Fri 9-5 and Sat 10-2. We also offer a 'Secondary Live Chat' service where you can 'talk' to others in a similar situation in real time via the computer each Tuesday evening between 8.30pm and 9.30pm, just follow the links to Live Chat if you are interested.

http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/support-people-living-seco...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/take-each-day-living-second...

I hope you find this helpful. Take care,

Jo, Facilitator

Guest user
Not applicable

Re: Any triple negative survivors out there?

April 2011 at age 49 found small lump, did not show up on mammogram but did on ultrasound. My dr and ultrasound confirmed a begnin dcis. went ahead to camver center for another mammo and ultrasound but with needle biopsy. All confirmed no cancer, DCIS. I decided I wanted it out, May 30 had it removed and turned out to be TNBC. He did not clean margins so I asked for an MRI and there was an additional tumor behind it. Double mastectomy, 6 out of 19 nodes positive, stage 3. Did the Adriamycin Cytoxan every other week for 4 cycles, 12 Taxol and 23 radiation. After it was finished in Feb 2012, I asked for a scan. had not had one since right before the mastectomy but was told it was not neccessary, I was in remission. 3 months later found a small lump at incision site under arm. very small. Needle aspiration showed it was a lymph node with TNBC. Pet scan showed 6 areas of activity with mets on chest wall, collarbone and under the arm. I did 3 1/2 mothns daily Xeloda.. went to 11 tumors. Did 8 cycles of Ixempra..some new growth and tumors increased in size. Just started carbo/gem Gemcarbo today for 8 cycles. I have been very aggressive in my treatment but to no avail yet. Brac1 and Brac2 negative. I have mets in lungs also. My tumor markers have always been in the normal range, according to them, I have never had cancer. Surgery is out of the question and just continuing the fight. After this only clinical trials exist and I am not interested. This May will be 2 years battling. In the mean time i missed both of my childrens weddings, the birth of my only grandson. 1 year after me my dad was diagnosed with stage for metastic pancreatic cancer and lived 5 month. 6 days before my dad passed, my only broterh committed suicide because he could not deal with the stress of our cancers. BUT I live each day as fully as I can, love love life here and don't want to go. That is not up to me and honestly nobody is promised tomorrow. God is so good and I could not do this with the Grace he provides. I have lost 6 friends to cancer, diagnosed since me. 4 were TNBC and under 32 years old. i had a friend in year 5, and was celebrating byt pulled something in her back. Found out 2 large tumors had grown in her spine and broke the vertbrae. It was also in liver, lung and brain. She was convinced she was ok because her tumor marker test were normal. Had not been scanned in 3 years. They are trying to remove the tumor marker tests. please get scans.
Morwenna
Member

Re: Any triple negative survivors out there?

I don't think its worse Mandy, but its obviously not the same as being hormone or her2 receptor positive.
To me it is "swings and roundabouts", ie lose on the swings but gain on the roundabouts or vice versa!

Ok, we have a high risk of recurrence in the first 5 years, and that is why we accept all this sucky treatment, but down the line, if it hasn't recurred early, it is much less likely to come back, and we can move on with more confidence than those hormone people!

That's my theory, and I'm sticking with it!!!
mandyp
Member

Re: Any triple negative survivors out there?

Thanks for the tips Giddy. I think you're right it's good to feel we're doing all we can. I've just finished chemo and am about to start rads on the supremo trial. I chose to have a mx first so like Morwenna will never know if my tn responded.
Is it really worse being tn?
Mx
Giddy
Member

Re: Any triple negative survivors out there?

Hi all, i'm triple negative and finished trestment last June.
I've read that the following things can help prevent a recurrance but you might want to check with your doctor first.......
Vitamin D3, blueberries, camu camu berry (i have it in powder form mixed in a flavoured yoghurt), turmeric, black pepper.
At least 30 mins of exercise a day. Cut down on sugar. Lose weight if overweight.
I'm not sure if any of it works but it's good to feel i'm doing something. The camu camu berry is recommended by Olivia Newton John who is 20 post cancer (not sure what cancer she had). It's full of vit c and is an anti oxident
love Chris xx

Guest user
Not applicable

Re: Any triple negative survivors out there?

hi

i am two years free so keep positive. you have no choice but to be positive keep on fightening.
jo xx
Guest user
Not applicable

Re: Any triple negative survivors out there?

hi

i am two years free so keep positive. you have no choice but to be positive keep on fightening.
jo xx
Guest user
Not applicable

Re: Any triple negative survivors out there?

hi

i am two years free so keep positive. you have no choice but to be positive keep on fightening.
jo xx
superfit123
Member

Re: Any triple negative survivors out there?

So far I am still a survivor. It is now almost a year since I finished chemo and about 18 months since the horror of the dx. I had a small tumour, no lymph node involvement and so far I am doing well physically. The emotional cost is another issue!
None of us know what will come next, regardless of our original dx and the prognosis we have been given.
But I think we need to embrace each day, despite feeling down or gloomy, as I frequently feel.
I now have HAIR again, have gone back to work part time and have realised that life is about so much more than day to day rubbish. I am now trying hard to do something about that realisation and learn to work less, spend less and live more. It can be hard to orchestrate I think, when you been through the mill like we have.
I am sending lots of love to Moondog and really hoping that she is feeling strong.

Morwenna
Member

Re: Any triple negative survivors out there?

Where did I read recently .... oh lord, I don't know, but somebody's oncologist said he didn't use the term triple negative for cancer that did not have hormone or her2 receptors as it was pointless to describe something in terms of characteristics that were missing. He said it was like describing a readhead by saying that person whose hair is not dark, blonde or brunette!

I guess it just struck a chord. I wonder if "triple negative" could actually be describing more than one type? That could explain why not everybody's will respond well to chemo.

One of the things that bothers me is that I had surgery first, (lumpectomy and then mastectomy), and the second surgery showed no evidence of disease. At least if you have chemo first you can see the cancer responding ...... or not, I guess, ... but I don't know if I have any cancer cells remaining, let alone whether they are responding to the chemo ......

Thats why when a friend said "but you're responding well to treatment, yes?", looking all expectant and encouraging, I had to swallow the urge to poke him right in his eye! 😉
Claire_1977
Member

Re: Any triple negative survivors out there?

Thankyu for your inspiration my daughter of 35 has under gone a mastectomy in june last year followed by 3 months chemo and 6 wks rads not responded to the treatment, she has now a local reacurrance and tripple negative the oncologist at the royal marsden has now put her on tablet form chemo hoping this will help xx
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi everyone 🙂

I was diagnosed with TN last May - a week before my 30th birthday. Some birthday present, huh?! My tumour was large (4cm) and had involved lymph nodes. I had chemo first 3xFEC and 3xTaxotere, followed by a wide local excision and lymph node clearance, followed by 22 rads, including 5 booster sessions. The chemo worked really well and my surgery results showed all lymph nodes were clear and only 1mm tumour left, removed with clear margins. I finished my rads a month ago and despite the encouraging response to treatment, I am completely frozen with fear. I am so terrified of it coming back or spreading, I am constantly getting myself in such a state about it. I've been having weird discomfort in my neck on the same side as the cancer, pain in the breast and also a pain in my chest on the other side that won't go away. I'm so scared that the cancer has come back already. I'm seeing my BCN on Wednesday and I really hope she can reassure me. I worry that my concerns aren't going to be taken seriously or investigated - does anyone else have this?

I do think some of you are right that if it's going to come back, it will no matter what we try to do to prevent it. Everyone I know can't believe that me of all people got cancer. I was 29, slim, don't drink or smoke, have eaten a healthy vegetarian diet for 20 years. It's so unfair, but none of it seems to matter - cancer doesn't care who you are 😞 I am encouraged by your posts, Josie and some others I've seen on here. I keep being told that it's normal to feel this scared once treatment has ended, but that doesn't really help! I can't stop crying and feel sick whenever I think about what could happen to me :'(

Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi all,
I have not been on here in ages. I was diagnosed with Basal TNBC IDC Grade 3 stage 2 in September 2009. It was a 2.5X2cm tumour. Fortunately my lymph nodes were fine - I had neoadjuvant chemo but the cancer did not respond at all - even to to the chemo which specifically targetsTN. I do get a little frustrated sometimes when people say that TN cancers 'always' respond well to chemo - that's not the case unfortunately. My medical team decided to withdraw the chemo after 4 rounds. I did not find chemo easy and my liver enzymes were not good - plus as the MRI showed very little response, I was happy with the decision to stop treatment. I had lumpectomy in Jan 2010 and rads so treatment finished March 2010. Then October 2011 I was diagnosed with TNBC in opposite breast (contralateral breast cancer). I had a bilateral mastectomy and I am doing fine at the moment. I have a BRCA1 mutation of 'unknown significance' and I am taking part in BRCA research in the UK. I have lots of BRCA type cancers in the family and mum had ovarian cancer at my age. I was first diagnosed when I was 45. My oncologist has suggested that I have my ovaries / tubes removed but I would just like one year without surgery! I am planning to have my ovaries removed soon though.
I am running 10k in the Race for Life this year. Work is as busy as ever (I am a teacher) and I am busy preparing students for their A level examinations. Like some of you on here, at times I have been filled with the fear of this cancer coming back again. A year post my second diagnosis, I am starting to feel more confident about the future.
Thanks for sharing all your stories and nice to meet you all! I often feel that TNBC is little understood.
Karen.
Guest user
Not applicable

Re: Any triple negative survivors out there?

HI Emjayjames, think it is to do with size, grade, and stage i also has nodes involved. I had 23 rads to the whole breast and under arm then a booster set of 5 to the area were the lump was removed. Had mammogram on tuesday got all clear results today what a relief!! Take care x
horace
Member

Re: Any triple negative survivors out there?

My nipple went almost black but then it sort of peeled like sunburn and now,6+ years later it looks normal.

Guest user
Not applicable

Re: Any triple negative survivors out there?

hi Lea W thanks for the information and support . I have had 15 sessions of rad .. Why is it different for everyone ?
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi Emjayjames, i had 28 sessions of radio to my breast and under my arm, finished end sept, my breast and armpit were all different colours especially my armpit it was really dark, does seem to have settled just looks like ive extra sun around the treated parts, think this is normal and nothing to worry about you can always ring your breast nurse who will reassure you, and there is a leaflet on this site which mentions discolourment of the skin Take care x
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi lea w thanks for the advice . can I ask if anyone had radiotherapy, my breast where I had it has got really dark marks on it . is this normal ?
Guest user
Not applicable

Re: Any triple negative survivors out there?

hi Josie, just wanted to say thanks for sharing your positive story, gives encouragment x
josyemarie
Member

Re: Any triple negative survivors out there?

I'd keep away from all animal fats organic or not and definately anything with milk in it. Reading Jane Plant's 'Your Liife In Your Hands' during chemo started me off dairy free and its probably the best thing I've ever done! I was ridiculed by a few girls on here but knowing I was doing everything I could kept me going. I think being dairy free was my crutch in the early days. I've only ate organic when I've grown it myself and have never given up alchohol, I was drinking my usual pint of guinness all through chemo. My end of chemo blood tests showed my liver count very high so I had to embarrassingly tell them that chemo hadn't affected my social life down the pub! It was an allergic reaction to the taxol so I should have kept my mouth shut!
Josie xx

Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi Emjayjames, they do advise organic, but i find the supermarkets don't have enough variety, buy organic when you can wouldn't stress over it, some good promising stories on here it defo helps, it hasn't got the best topic name has it, stay strong and take care x
horace
Member

Re: Any triple negative survivors out there?

One interesting thing about tnbc is that the evidence shows that,whilst tnbc is more aggressive than +++ bc in the first three years ,if you get to 8 years post surgery with no recurrence then the doctors will regard you as 'cured' which never ever happens with ++ bc.
It is further complicated because tnbc is especially receptive to chemo,especially taxotere and since the widespread use of taxotere some oncologists are talking about 'cure' after 5 years.
Of course it is all statistics and percentages.Some will never have further problems if they have only surgery,others sadly will have recurrences/secondaries whatever treatment they have.
I hope you all have long cancer free years ahead to enjoy your lives and your families 🙂
I posted at the beginning of the thread but quick stats from me-dx October 2006 with 2cm grade 2 tnbc.No nodes involved and I had WLE, 4xfec and 4xtaxotere followed by 15 rads.
There is nothing to say I wont get a completely new primary of course or develp a totally different cancer somewhere else but for now all's well.

Guest user
Not applicable

Re: Any triple negative survivors out there?

Thanks for giving advice on what I should be eating . should the fruit and veg be organic ? I am feeling a little better seeing other ladies talk about TN an having survived.
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi Josie, my god your story is amazing how the hell you got through all that is beyond my thoughts you must be one strong lady, i have just come in from a 4 mile walk in the snow!! very much like you love getting out walking it helps my mind. I have walked 45 miles this month try and go 3 - 4 times a week, i have changed my diet too hopefully i will be ok, my onc says i am doing everything i can and they have. Its really out of my hands, so glad you are past all this and it definitely has helped hearing your amazing story, Take care and Thank you xx
josyemarie
Member

Re: Any triple negative survivors out there?

When I was discharged from follow ups my lovely consultant gave me a big hug and said she never thought she'd see that day, and now recommends her TN patients to do as I did - a very low fat diet, keep as slim as possible and take up exercise - power walking being about the best!. When I first met her and asked her advice about keeping mets at bay I was told to just get out there and enjoy each day (might as well have said write your will) Being a life long vegetarian I gave up all dairy produce and took up power walking. I was like Fforest Gump out in all weather. Every time things got to me I'd grab my coat and off...the more worries I had the faster I walked!..
My first year after diagnosis was horrific. I was attacked by a lunatic and had my ribs broken half way through chemo, then just after my last rad my bro in law in Ireland came out of the closet and took a massive overdose, I had to rush over with the moral support. Then my beautiful little grandson was born dead at full term, I was with my daughter and held him in my arms. A few weeks later my 20yr old fit as a fiddle son had a suspected heart attack, a few wks after that my other son was nearly killed in an horific car crash and is now badly handicapped, My best friend Bruce the rottie who wouldn't leave my side throughout chemo died unexpectedly outside my bedrm door one morning...it went on and on and on.We are just ordinary folk but in the end I was afraid to pick up the phone and my consutant sent me to a stress councilor. She told me she wouldn't be able to handle my situation any better herself...and gave me her number if ever I needed a chat (I never did). I'm telling you all this for you not to worry about stress bringing cancer back because if it did I wouldn't have made two years let alone nine!
Josie xx

Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi Josie, Its great after 9 years that you are still think about how others are feeling, Thank you for your post it is really helps, there are many negatives on here its nice to hear some great promising news, i was diagnosed tn age 40 with 1 node positive out of 7, had 3x fec 3x tax 28 rads, go on tuesday for my 1st mammogram, take care x
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi Marigold, think you are right about stress i have always lived life in the fast lane not really taking time out to relax, i do try and have some me time now, as for diet and exercise the experts dont know what causes bc so i would stick to there advice prevention is better than cure. Processed food again like you say is a no no. I have never been overweight, eat healthy very rare i drank alcohol but still got it so i can also see what border collie is saying also, but i don't think we dont really have a choice, i really do try and do everything in moderation. Good Luck everyone x
Rubydoo
Member

Re: Any triple negative survivors out there?

I was diagnosed in December 1.5 IDC grade 3, 2 nodes out of 12 and possibly vascular invasion but decided not to delve into that so not 100% sure. I got my diagnosis in french so didnt understand it all and probably for the best. I keep visiting this site when im crushed with fear and it always reassures me to read the successes of our amazing long term winners... You give me the hope i need when all seems lost. TN comes with its own bag of fear and its rubbish!! This disease took my mum from me way too young and i'll be damned if my one year old will lose his mummy so young... No no no! Please keep up the positive news its a lifeline xxxx
josyemarie
Member

Re: Any triple negative survivors out there?

Forgot to say mine was 2.4cm but just 1cm when I
had the biopsy 3+wks befre the op!

josyemarie
Member

Re: Any triple negative survivors out there?

Hi, I was diagnosed with TN just before xmas 2003. It had spread to my nodes and had so much vascular invasion it was off the Ricther scale and expected to come back during chemo. That was nine long years ago and it has never come back I had 4xFEC. 4xTAX and 6wks of rads. I let them throw what they could at me and it worked. May my luck rub off on you all.
Josie xxx

yellow
Member

Re: Any triple negative survivors out there?

spot on boarder collie
I do think your genetic make-up determines whether or not we develop cancer. There are so many people including those in the medical profession who dole out advice on diet etc.l, too thin, too fat, the list goes on. Please remember that there are so many women out there who do eat healthy, they exercise, and do not do drugs or alcholol and by all accounts should never be at risk of developing breast cancer yet they still do. Please don't beat yourself up. If breast cancer is going to return, it will, regardless of the lifestyle you lead.

Border_Collies
Member

Re: Any triple negative survivors out there?

Marigold I was diagnosed with TN in November and am on my 5th Fec with 15 rads to follow.

I'm 68 years old, weight 7st 7lbs, don't drink, am a vegetarian, never eat processed foods and am extremely activ e. I'm a dog trainer and owner of three dogs so I'm out every day in all weathers walking and training for competition work . I really do think it's written in our blueprint when we're born. If it's in the blueprint then you get it.
Marigold24
Member

Re: Any triple negative survivors out there?

hi Lea, I was diagnosed in August 2012 with TN and have had a mx, 6FEC-T and will be having 25 rads in March. My surgeon recommended two things - being as thin as possible without actually being underweight, and lots of exercise. I've always had a good diet (lots of fruit and veg) but am now also trying to cut out processed foods. I've also stopped drinking alcohol. I think trying to reduce stress is also a good idea
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi i was diagnosed in Mar 2012 with triple negative bc had lumpectomy, 6 months chemo, fec and tax, 28 ses of rads, age 40 i go next week for my 12 month mammogram, the only thing i can suggest is try eating really healthy lots of fruit and veg, little alcohol and excerise, i too am very anxious about triple negative. Stay postive i know its easier to say then actually doing. Take care x
yellow
Member

Re: Any triple negative survivors out there?

Hi I was diagnosed in 2008 (almost 5 years) with tnbc - 7.7mm tumour (small less than 1 cm) no nodes or vascular invation grade 2. I was aged 55 at diagnoses, I am now 60, had wle and rads (can't remember how many). I was never offered chemo as this was considered over treatment by my onc. You can imagine how scared I feel when I read on here that nearly all tnbc have been offered chemo to maximise there life expectancy. However, regardless of treatment, you can never take this disease for granted, no matter how many years you survive. I remember reading recently that a lady had survided 20 years with no evidence of secondary disease, but it still came back. I must admit, I have read the secondary site several times, only because I have to be realistic as breast cancer can never be considered a curable disease and maybe one day my cancer will return, as so many do. Five years on, you may wonder why I am not putting out the flags or having some sort of celebration, but the only thing I ask my self daily as I am sure every women on this site has asked, Why did I get it in the first place. I just hope that one day our daughters and granddaughters will be able to say, Remember when women use to die of breast cancer. Sorry if this sounds like a rant.

Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi I am new to this site, Im 38 an was diagnosed with triple neg last may . I have had chemotherapy, double masectomy an radiotherapy, but now I am finding it hard to move forward . I am living in fear that this is going to come back. I also cannot come to terms with having triple negative .. this forum as given me a glimpse of hope . Does anyone know what I can do to minimise the risk of it coming back . x
Guest user
Not applicable

Re: Any triple negative survivors out there?

Hi it didnt enter my head to refuse anything i was offered, wanted everything to be sure I'd, for me I'd covered all bases, but i feel it's a very personal journey, sounds cliche, but as long as you feel you've done whats right you then thats all that really matters, good luck with the rest of your treatment xx
Wendy56
Member

Re: Any triple negative survivors out there?

Morwenna

Those comments were obviously coming from people that have been in this place right now how dare they say things they clearly do not understand.

I am a survivor. Had hormone neg tumour 14 years ago ( they did not know about the HER one back then) but this time I am TN. The way I see it as awful as the treatment is we do not have a choice we did not ask for this bloody disease (let alone twice) but at the end of all this we will get our life back and get back to something near normal. Trust me I have been there.

I remember saying to my Oncologist 14 years ago that he had an awful job telling people all this horrible news. He just replied to the contrary I make people well again and that is very true.

Ignore the ignorance of these people and I know it is hard to bite our tongue sometimes.

Hugs

Wendy x x
Morwenna
Member

Re: Any triple negative survivors out there?

It was put to me this weekend, by two different people, that I had had the option to refuse treatment.
I have triple negative, grade 3, stage IIIa BC, the tumour being min 8cm, and one node metastasis of .25cm,.

I had two surgeries, the second being total mastectomy due to positive margins. Now I am on 6 months of chemo, to be followed by 5 weeks (?) of radiotherapy.

I really do not feel I could have refused anything that might help eradicate this beast, but I feel absurdly upset by the suggestion. I don't want to die. I don't want my family to have that grief. I don't feel I made the wrong decision, or even that there was really a decision to be made. Why then do I feel so disturbed by those conversations?
Guest user
Not applicable

Re: Any triple negative survivors out there?

hi new to this, diagnosised March 2012 grade 3 lymph involvement had 3 fec and 3 tax, mx and lymph clearance, then 20 rads, treatment finished in December, does anyone else feel glad treatment is finished but nervous there is nothing else, doing a BCC moving forward course which is great, but so far no mention of TN another 2 weeks of course to go x
Rubydoo
Member

Re: Any triple negative survivors out there?

Hi Iris
Did you have a mastectomy or lumpectomy to remove the lump? Just curious as to why you decided on no treatment after that? Have you followed a particular kind of diet or lifestyle since then? Sorry lots of questions as ive just been diagnosed and scared of reoccurrence!
Wendy56
Member

Re: Any triple negative survivors out there?

I was double neg 14 years ago they didn't know about HER2 then. Have just been diagnosed with new primary other breast TN. On chemo at the min going to request double MX

Wendy x