Any triple negative survivors out there?

[Guest user]

I am at 4 years and 4 months!!! I had 3cm, grade 3, no nodes. I turned down chemo & radio as adjuvant therapies.

[Guest user]

Hi, my name is Shirley
In the days I had breast cancer it was a case of double negative because her2 was unknown. I was double negative Stage 3. Had segmentectomy because the cancer had spread around the lump into the lymph vessels. Then 6 weeks radiotherapy and 6 months chemotherapy. That was all 16 years ago. Have always seen a doctor with the least concerns I have had during that period and has always so far turned out fine. I have had an active and fun life post cancer.
I do not think about it much now but have just had a friend diagnosed so that is why I've come back to breast cancer care for information.
Good luck to all of you triple negatives.

[chrissy16]

Hi,

i was diagnosed with tnbc in February 2011. Stage 1, grade 2 ish, on the cusp. No node involvement. It is now nearly two years since diagnosis. I had WLE (lumpectomy) and 3 weeks radiotherapy. I am now 64 years of age. I feel very well now, but it did take a bit of "getting over". I think it is the tiredness that got to me. I feel great! Chris x

[sarah66]

Hi i was originally diagnosed grade 3 TNBC in Jan 2008, had WLE chemo and rads, ok upto Oct 2012 when i was diagnosed with a recurrance and ? lung mets or new primary , waiting to find out ( see lung dr tomorrow!) . Who knows what the future holds for us but we have to stay strong and take our courage from these brilliant ladies on this site.

Sarah66

[Guest user]

Wow am I ever grateful to find this sight with all you strong, amazing women. I was diagnosed in July 2012. Surgery done in September. I am a triple negative with a Stage 3 aggressive cancer. They took a tumour out of my breast the size of a lime and 12 out of 18 lymphnodes were positive in armpit. I have just had my second chemo of FEC to be followed by 3 sessions of Dox. Six weeks of radiation to follow. One thing I have noticed is this second time chemo I have been experiencing heart palpitations that are driving me crazy. Does anyone else experience these. I have a call into the oncol nurse. Thank you all for being here and sharing your courageous stories. We truly are never alone, but sometimes we need to seek to find others.

[Guest user]

Hi, I have secondaries in the liver and bones. Basic research will show that taking vitamin D3 will keep bones strong. I have been using it with great success for 10 months now and the huge lytic lesion in my hip has healed, much to the surprise of my oncologist. There is also strong clinical evidence that it can halt cancer in its tracks although it is not a cure. It is also useful in boosting the immune system. It is currently being used alongside chemotherapy in 2 London hospitals. My liver tumour is static.
I have also been taking oral chemo capecitabine and zometa for 2 years now and im having a months break. Keeping the weight off, cutting out sugar and sugary foods and fizzy drinks together with exercise and a healthy diet will ensure you stay in tip top condition.
At 61yrs, I ride my horse and regularly walk 8-10 miles with my walking club. I enjoy gardening and have just decorated my staircase.
Forget about being ill, concentrate on living, don't sit around worrying, enjoy family and friends, do those thing that you enjoy. Get a pet if you dont already have one. A positive attitude helps keep you going. Ditch those folks who are negative and say things like "oh you poor thing you're doing too much" and " you should rest more". Exercising within your limits is actually good for you and will help your lymph system to move.....you will become stronger for it.
All you ladies check out this website www.cancerActive.org and google the Dr Johanna Budwig organisation where there is lots of info and free downloadable books on every subject in connection to cancer.
best wishes.....remember stress is no good for the soul......and you are what you eat.........do the research and you will find more than you ever thought possible..... X

[Guest user]

Hi darling

I'm over 3 years in. BRCA1 and still here sweetie.......

[superfit123]

Moondog and anyone else I have inadvertently upset, I do send my humble apologies. The reason I said 'don't look on the secondaries threads' is because I have found it very hard to come to terms with having cancer , let alone TN. The secondaries threads simply made me more scared and sent my mind into freefall. Which is why I suggested that people looking for survival stories didn't look there.
I am SO sorry to hear about TN people who now have secondaries and I agree that everyone wants only to hear the success and 'moving on' stories. I just hope and pray that one day very soon the doctors and researchers will understand the complexities of TN better and that there will be more and varied treatments for this particularly nasty form of breast cancer.
And Moondog, I send you my very best wishes and prayers. I am sorry if you felt I marginalised your situation.

[Guest user]

Hi,
I am stage 4 TNBC metasised to my lungs. i have been told I have two years to live. If you belive what they tell you you may as well sit at home and mope. I don;t for one minute think that this is incurable. It is scary and all i can say is that there will always be good and bad days. Since my most recent diagnosis i ahve completely cahnged my life; I have taken control and not letting my life be in the hands of others completely. I am not saying not to have surgery and chemo- do it's all very important and I hope it works for you all. It hasn't worked for me yet but I have changed my diet, started taking supplements, exercise daily, do yoga, meditation, acupunture, reflexology and take medicianl mushrooms. I try to read things that are positive and do visualisations as I belive that the ind has to let go too. I have set up my own website that breaks down what I am doing and I hope that other people will go on there and start converstions and give their feedback and their research. I am currently going to germany for dendritic cell treatment as well as seeing if I should go back onto chemo. I write a blog every day too. I would love to hear your thoughts and wish everyone luck.
Everyones situation is different but I do believe that you have listen to your intuition and know that you are doing the best you possibly can in the time given.

My website and blog are at [link removed by moderator]
I'll still be here in 4, 6, 8, 10 years. I know it.
Love n Light.
XX

[Guest user]

I'm sorry I'm probably being too sensitive, just trying to stay positive (if realistic!) and is great to hear of people doing well.

[Guest user]

Lauralable...I am sorry if you found the title of this thread offensive, it was not created for that intention. When I was diagnosed in march, I knew nothing about tn and knew nobody, e hospitai I am being treated in could not give me any figures, further info or any other people to talk to. The intention of this threat was to give me and probably many others finding it hard to find positive news regarding tn (media coverage on this subject is unfortunately not very encouraging). Personally I have found the responses very encouraging and positive, it has given me faith.

[Downbutnotout]

I like to see the good news stories. I just wish it could be that way for everyone.

Hi Moondog, I have to confess I've never looked on the secondaries threads, partly fear (it's such a fickle disease when you see people like yourself who had no node involvement yet are now having to cope with secondaries but then people like Josyemarie who has managed to get 10 years cancer free despite a very poor prognosis) and partly because I felt like I would be intruding - if you can understand what I mean. I'm sorry you feel marginalised. I shall take the plunge and pop in for some inspiration.

Hi Laura64 - I accidentally grew some marijuana a couple of years (amongst the opium poppies!). If only I'd known then what I know now I could have kept it growing for future use!! Must have been from the wild bird seed. It was quite well grown up before I realised what it was. There were probably some nicely 'chilled' composting worms that summer.

[Guest user]

Hey cherryred, no sorry I wasn't having a go at you, it's lovely to hear stories from anyone doing well and living their lives, it was more a general comment about this being hard enough without constantly feeling like doom and gloom of this being the worst possible scenario when it's not. I like to hear stories of people doing well being healthy and happy as that what hopefully I will be too soon enough 🙂

[Cherryred]

I hope my comment hasn't offended, it certainly was not intended to and was very much written to try to reassure and support if anything. I just rememember when I was diagnosed how reassuring it was to read stories about long term "survivors ", ( I don't like that lable myself but can't think of an alternative) and how frightened I was (still am) by some things I read - so any good news, however small, lifted my spirits.

[sara12]

Jellymould, I was also stage 3 TN - 5cm tumour, and had chemo before surgery, then rads. Had all three because at the moment there's no other treatment for TN, like Herceptin, Avastin, Tamoxifen etc, so was happy to have everything offered at this stage. Hope your onc was helpful and explained everything clearly.

Sara x

[Guest user]

Of course there's hope, thousands of woman survive this every single year in the uk and many of them are triple negative. I have to say when I was diagnosed with TN I had no idea what it really meant, thankfully or maybe not thankfully I found out more info on this site abut percentages and figures, something that really upset me for a really long time and I found hard to deal with. I'm still finding hard to deal with to be honest and find even the title of this thread 'any TN survivors out there?' Insulting as it suggests there are hardly any. Lots of the survivors are out there surviving and living their lives, that's often the difficulty of forums like this as its probably more bias towards under current treatment or those with seconardiaries not those just living their lives. i don't mind to rant sorry I just find it hard enough without reading doom and gloom. Maybe we should start a new thread, something happier and more cheerful 🙂

[Cherryred]

Just to let you TN ladies know , that a lady who became a friend, who was diagnosed with me ( I am ER+ but she was TN) , had a 7cm, Grade 3 tumour , 14 postive nodes , is 9 years NED, so never, never give up hope.

[pepihorse]

Brilliant news Josie !!! well done !!!! theres hope for me yet !
Wendy x

[Guest user]

hi all ive just been dx with stage 3 triple neg, waiting to see onc now about chemo and rads, scared but got to be positive. would like some advice for having chemo or rads please.

[josyemarie]

It's 10yrs tomorrow to the day when I went to my GP after discovering a lump in my breast. I was dx with a grade 3 TN with spread to nodes and so much vascular invasion they didn't expect me to get through chemo without it returning. I was given a 35% chance of 5yr surivival and a 45% of 10 yrs........I think I've just done it!
may my luck rub off on you all,
Josie xx

[gaco59]

Just wanted to add some words of encouragement to all newly diagnosed Triple Negatives. I was diagnosed Nov 2009 after many tests as they could not find a primary, just a malignant lymph node. Final diagnosis was grade 2 invasive DCIS with 2/9 lymph nodes affected. They have called mine triple negative although my ER was 7/8 in DCIS so struggle to really understand. Had partial mastectomy, lymph node clearance, 3 FEC, 3 Taxotere and 3 weeks radiotherapy plus 4 booster sessions. Am coming up to 3 years now so would like to pass on this good news as I was convinced I would not be here now. Still confess to worrying too much about it all but try to do things that I feel might help, ie exercise, healthy eating, not drink too much. Not easy though. BUT so pleased there is much more information on here now. When I was first diagnosed I really struggled to find information on triple negative and that made everything so much more stressful. So thank goodness for sites like this. Good luck everybody.

[AnitaC]

I'm 5 years post treatment this month! Invasive ductal, 5/11 nodes, Grade 3, mast LD recon, FECX and rads. Onc gave me 50% chance of being well in 5 years. I'm still here and I'm well (with everything crossed).

[horace]

I read the secondary threads regularly and am in awe at the courage and love shown by so many who are facing up to the thing we all fear and doing it with dignity while finding time to support the rest of us.
Last Friday [6th] I reached the 6th anniversary of my tn dx [2cm grade 2 node negative]. I had wle, 4xfec 4xtax and 15 rads. I will never stop worrying but am hopeful now. My annual appt with surgeon is tomorrow.

[bud932]

Hi
My name is Gail and I was diagnosed with TNBC in July 2008 aged 44. First I had 6 pulses of chemo followed by node removal wle and 30 radiotherapy sessions and im still going strong. Just had a clear mammo and thats me nearly 3 1/2 yrs since all treatment etc finished. Every day is a bonus andItry to think positively though I cant deny I still have doubting days even now and I defy anyone who says thy dont some where along the line. Everybody keep your heads held high and your chins up.

[chascat]

Moondog, I have only just finished treatment for primary bc and do read the secondaries threads, I agree with you completely, the reason I read the threads are because of everything you've just said, however, I also know how they can scare people witless, I think that's probably all Superfit123 meant and i'm sure she didn't mean to offend anyone x

[Tolliebelle]

Hi Moondog
I agree with you that we should look on the secondary posts I do have a look to see how you are all getting on and hope that I dont someday have to join you (sorry that's very selfish sounding) But I do have the utmost respect for you all and the way you keep on keeping upbeat despite the awful treatments you are all having to go through. I am 18 months past dx for TN and as you found lump very early but am aware that is no guarantee with this disease. I wish all you secondary girls the very best of everything
Jill

[sukiem]

A powerful and thought provoking post moondog-thanks

[Guest user]

aww moondog that is so sweet all true of course i hope they bring out the wakey baky for us all laura xx

[Guest user]

Don't look on the secondary threads!
Please do look on the secondary threads, because there you will find some of the most courageous, witty, supportive and loving ladies you are ever likely to meet. There you will see true survivors, who withstand hideous treatments in order to prolong their lives with their familes and loved ones for as long as possible. Some of us secondaries ladies are feeling a bit marginalised at the moment, wondering where we fit into the sea of pink that is October. We're trying hard to raise awareness of secondary breast cancer amongst the general public, but maybe we need to start here within the breast cancer community. And we are one community which needs to stick together, because you're never completely in the clear with this foul disease.
I too had an early, triple negative primary(12mm) with no node involvement, and here I am three years later with secondaries to my lungs, liver, sternum and lymph nodes.
I wish with all my heart that Superfit123 and friends continue to thrive and live long, disease free lives.
Good luck ladies
Moondog

[superfit123]

Well. I don't yet consider myself a 'survivor', but I am am now (within a few days) a year on from dx. I had a very small , 9mm, screen detected tumour and have have had 3xFEC and 3x tax followed by rads. After WLE with no nodes involved. treatment was awful and the emotional follow on has been tough to say the least. i have my 1st screening mammo next week and I spend my whole life worrying about aches in my big toe.
But I have think I have made friends for life on here (see starting chemo in December 2011) and I am now trying tom believe that it is all going to be OK.
Hang on in there people and DON'T look on the secondary threads!
I will post agian after my mammo results.
Love to you ALL xxx

[anni]

Hi Anniemay
I haven't been on this site for a while - daignosed with TNBC in March 2012 and just finished chemo....interested that you were diagnosed some time ago and still doing well. Also that you are in the Manchester area as I am. Hope things continue to go well for you.
Anni

[Nonny]

Hi all, I was diagnosed Jan 2008 age 62, 6.5cm tumour, opted for chemo first 6 lots of TAC, boy was it hard. Double mx, (had WLE in other breast in 2004 so decided to get rid of both), with axillary clearance, 5 of 19 nodes and surrounding tissue affected. Then three weeks rads. Finished treatment in September 2008 so very nearly four years now. Have been signed off by my Oncologist no more check ups! So there is light at the end of the tunnel there are quite a few of us TNBC survivors, we just don't come back to this site as often as we used to.
Love and Hugs to all xxxx

[Guest user]

Hi I am two years past diagnosis, tumour size 3.7 cm, nodes clear and no vascular invasion, I had WLE, TAC chemo and 20 rads. Just had annual mamogram in May which was clear. I have been back at work full time for the past 16 months and really enjoying life, making the most of every day with my kids. I have heard that most reoccurances happen within the first 2-3 years with triple neg so I will keep praying until May next year. My eldest lad wants to be a doctor and I so want to see him achieve that xx

[Guest user]

I can offer 12 mths post surgery (but 16 mths postdiagnosis as I had chemo first), with a large TN tumour aged 30.
I had FEC chemo first and went into clinical remission (ie no lump anymore) after 2 cycles!! After 4 they scanned, no tumour on ultrasound so they operated early. No tumour found at all - only a possible small scar in 1/24 nodes)
TN can be chemo sensitive - mine was - and plenty do survive long term. I want to as well - I have a 2 and 3 year old to look after.

[Rexi]

The results from my surgeon today were good! Yes there is still a cancerous lymphnode, which needs to be taken care off ASAP, but the PET CT scan shows no other areas of concern! We are soo relieved!
So going to have a small operation in the few days and recover. There is some conversation to be had if there is any additional treatment necessary.
X

[loula]

Yes Horace and Katsteer, I've researched my family tree back to the late 1700's and all my ancestors came from the middle of England. My six monthly checkup with the surgeon is due soon (fingers tightly crossed) so maybe I'll ask him about the tn , age and ancestry connection.
Loula

[Guest user]

hi,not been on hear for a few years,used to scare myself half to death coming on during my breast cancer journey,i was diagnosed with TNBC on 10th july 2008,it was a 15mm tumour stage 2 grade 3,i had a lumpectomy and all lymph glands removed,i got clear margins,and no node involvement,i had 5 out of the 6 FEC chemotherapy,couldn't have my last one,due to geting pneumonia each time i had chemo,i then had 15 radiotherapy treatments,and apart from needing to be on oxygen 15 hours per day,i am doing well,i am a 3.3 month suvivor( since all treatment ended)but not wanting to scare any of you,my beautiful sister died on the 4th of june,8 weeks after being diagnosed with a 19mm tumour,she had a lumpectomy like me, clear margins like me, no spread to lymph glands like me,so we were hoping and praying for the same out comes,we were so very close,she went with me for my tests,result,every hospital appointment,every chemotherapy treatment,she just wasn't herself after her lumpectomy.her daughter took her to hospital,they kept her in,gave her a mri scan,what it revealed shocked us all to the core,she had secondries in her lungs,liver,bones.kidneys,and brain,i just cant get my head round it,she was only 6o,i was 52 at diagnosis,just cant believe she died before she even had chance to start any treatment,and i even feel guilty,which i know i shouldn't,but why ?i have another sister,i now have to have a genetic test,praying it will be negative,,i really hope i don't upset any one with this post,it is not my intension,i just think we have to be honest at all time when dealing with cancer,i have never come across a case like this,so bear in mind its rare,you hear so much bad about tnbc,but they also say if it is going to come back,then its usually within the first 2 years,so i have to take comfort in that for myself,i pray for all tnbc sisters,i pray for a break through that some day soon we will have follow on tageted therapies,i pray for newly diagnosed just starting out on this journey,and i pray for all suvivors,god bless each and every one of you

[Rexi]

Thank you for sending positive vibes on this threat.

I specially like Sandytoes story - to go on and have babies after this experience sounds like an amazing turnaround 🙂

I had a PET CT scan last week and am going to get the results tomorrow from my breast specialist. I already know that I still have a lymph node sitting there still with cancer inside, the doc assures me that this does not mean bc has come back.

Miadanu - you had the lumpectomy first and then mx?

I had the gene test and i am not a brca carrier, but still I was wondering if I should ask for preventative mx, just because it's tnbc. My surgeon deffo supported lumptectomy only, giving me loads of confidence, so I had that in Dec '11. I am very nervous about the outcome tomorrow, let's see what's going to happen ...

Rexi

[horace]

It is interesting that both loula and I are 'older' and both have grade2 tnbc. I had read that about it being more common in those of African descent but everyone in my family back to early 19th century is from North East England or Southern Ireland.

[Guest user]

Yeah I'd read that....time to get the family tree out!!

[loula]

Like Horace, it seems as if I'm another unusual one - I was diagnosed in Dec. 2010 with tnbc stage 1, grade 2, at the age of 67. Isn't tn also more commonly associated with women of African or American/Hispanic descent?
Loula

[horace]

I think I am also unusual in being dx with TNBC at the age of 62.It usually manifests in younger women and as you say is usually Grade3. Interestingly I also have a cousin [on my father's side-his half brother's daughter] who was dx with tnbc aged 61 and who is still well nearly 9 years post dx.She didnt have taxotere and cant remember what chemo she did have.

[Guest user]

Hi, I'm another one 'keeping on keeping on'. I too have secondaries......... But I'm 3 yrs 6 mouths from Primary diagnosis and 19 months post secondary diagnosis. Tnbc does have a mind of its own, but it is very very responsive to treatment. Also an area of lots of research.

I'm still here!!!

Sadie xx xx

[Guest user]

Hi all
I'm determined to be a survivor!!!
Keep up the great work ladies, you're all fabulous xxx
Sharon :-))

[Lulu34]

They do usually grade it at the time of biopsy but that is only an indication and can change when you have surgery... Eg they can biopsy a bit that is grade 2 but when they look at the whole tumour there might be a small bit of grade 3 so that would give it a final grade 3 even if it was a tiny dot compared to the grade 2.

The stage is also worked out after surgery as that is based on the size and spread of the cancer... Stage 1 is a small tumour confined to the breast, stage two may have spread to the lymph nodes or be medium sized and stage three may have spread to nodes further from the tumour or be a large size.... Stage 4 is when it has spread to another part of your body and is sometimes called advanced breast cancer or metastasis or secondaries.

However TNBC is pretty much always grade 3.... I think horace is the only TNBC lady i know of with a grade 2 and havent come across anybody with a grade 1, so even if you dont know its quite likely it would be a grade 3.... As you have positive lymph nodes you would be at least stage 2. Stages 1-3 are still cureable.... So thats really what the aim is..... To cure you!

Best of luck xx

[horace]

Katsteer-wle is wide local excision otherwise known as lumpectomy-surgeon takes ou the tumour and surrounding tissue until he has a margin clear of cancer.Some people are told grade after biopsy I think but it is usually after surgery.

[Janet_BCC]

Dear Katsteer

I thought you might find our glossary of terms and abbreviations useful. Here is the link:
http://www.breastcancercare.org.uk/community/forums/abbreviations-acronyms-used-forum

I hope this helps.

Very best wishes

Janet
BCC Facilitator

[Guest user]

Now I'm worrying about the fact that all you ladies know the grade and stage of your bc, I have not been told mine...do they not grade until after surgery..also I may sound a bit thick, but what is a wle?

[Lulu34]

I was diagnosed with TNBC in may 2009 and a TNBC recurrence in chest wall in aug 2011, i was node neg but have a friend who had 12/20 nodes TNBC over 4 years ago and she is absolutely fine so shes my inspiration.


Lxxx

[Anniemay]

Hi
I was diagnosed with TN in May 2006 - 6 years now post treatment. I also had positive lymph nodes and was paranoid when I realised there was nothing else for me to take. I'm also trying to start up a BC Dragon Boat team in Manchester and will be posting on Inspiring Stories once I get things up and running.

Anniemay