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Just diagnosed with triple negative caner
Hi my name is Jo (41) and I have just been diagnosed with invasive ductal cancer which is triple negative. I had the op two weeks ago to remove the lump and surrounding tissue and some nodes from the armpit. Initial results are good - no cancer in the lymph nodes and they managed to remove a good enough clear margin around the tumour. It's the triple negative aspect that scares the life out of me. I gave birth on Christmas Eve this year and then 6 weeks later I'm told I have cancer - still can't believe it some days. Starting chemo shortly followed by radiotherapy. Going to see oncologist this coming week so I am not sure what drugs I'm being given.
Would love to hear from anyone out there.
Thanks
Jo x
Hi Jo and welcome to the BCC forums
I am posting links to a couple of BCC publications which you may find useful, one is a resource pack designed for those newly diagnosed and the others are about undergoing radiotherapy and chemotherapy:
http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/
http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/109/
http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/137/
Our helpliners are here to offer you further support on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2 so please feel free to call.
Take care
Lucy
Hi Jo
I was diagnosed triple negative in October. Had mastering as quite large (my choice) had 3 lymph nodes affected.
I'm now more than half way through a course of chemo FEC T and will have radio therapy in June.
The treatments given ae tailored to your circumstances, you will probably have some chemo as triple negative is very responsive to it, I found this web site great to support you through, asking about side effects and just having a rant. Chemo IS do-able but you can have some days that are not so good.
I am having radiotherapy as the tumour was very close to my chest wall and it was recommended, your oncology team will work out the best treatment for you.
After the treatment is finished there will be follow ups in clinic, quite frequently I believe, remember triple negative is very susceptible to chemo, keep on trucking through, take all the help you can get, rest as much as you can, good luck and best wishes,
Pat
Hi Jo I was dx with triple negative bc in October 2006.I had the op,chemo and rads and have had no further sign of the disease.I know at least 3 other tn ladies who have lived longer than 8 yrs after tnbc without recurrence[one is my cousin].The main thing is that you have no nodes involved.The latest chemos are especially effective against tnbc and there is some Canadian research which shows that if you can get to 8 years without recurrence then the cancer is very unlikely to recur.Yes it can be more aggressive than hormone +ve bc but it is less aggressive than Her2+ve.True they have herceptin which levels the playing field but tnbc is not the worst dx-it can be beaten and here you will find so much help and support.Pm me if I can help in any way.
Valxx
hi Jo
Sorry you have found yourself here, it must be a very worring time for you especially after just having had a baby. I,m not triple negative as I,m very slightly er+, but thought i would give you my support. From what i,ve been reading on here, it's been said that triple negative cancers respond better to chemo. good luck and love
Maria x
Hi Jo - my daughter was triple neg. when she was diagnosed at 32 - and she had several affected nodes too. She had a 2nd, unrelated primary (hormone +) in her other breast 4 years later and has had 2 mastectomies, recons, chemo,, rads etc.
BUT - she's now 41, over 8 years past her 1st diagnosis, has had a 2nd baby and is VERY well.
Do hope what Horace and I have said will encourage you (and Pat) - you are at the start of your journey and I know how overwhelming it all is and really hard to accept .( have stage 3 BC myself) - but do hope that this encourages you.
Mary
Hi Jo,
My name is Beccy (35) I too am triple negative I was diagnosed in February this year and I also have a little one who is now 5 months old.
I had a lumpectomy approx 4 weeks ago and I like you had no nodes involved and had a good clear margin. I am due to start chemo on Friday 25th Mar I am having FEC & doxataxel but some ladies are treated with TAC. Like some of the other ladies have said your drugs will be tailored to you so fear not they will offer you what you need.
Please feel free to drop me a line anytime. I have found it a real help talking to others on this site (thanks to Sarah, Hotpot etc) x
Take care for now
Beccy x
Hi Jo, another triple neg here.I was diagnosed with a 2.5cm tumour with spread to nodes. After lumpectomy,chemo and rads I'm 7+ years down the line and still going strong.As Horace said there are some very good chemos out there for TN's.
Josie xx
Hi everyone,
thanks for the words of encouragement from all who replied to me. It's comforting to know that others are going through a similar thing. Lets hope that they find a targeted therapy for this triple neg soon.
Good luck for your chemo this friday Beccy, I'll be thinking of you on Friday - I think my first one will be in the next week or two. I just thank god that I have my baby boy as if I didn't I would probably spend most of my days feeling sorry for myself and crying.
Does anyone know if most types of chemo for breast cancer cause hair loss, or are some worse/better than others - I know it should be low down my list of priorities but I just wondered. What do you all think of the cold cap, have you tried it and if so did it work.
Thanks
Jo x
Thanks again Lucy, Pat, Val, Maria, Mary and Beccy
Hi Josie,
thanks for the words of encouragement. It's so good to hear from other women who have gone through it and come out the other side.
Jo x
I had 4xFEC,4xTax and wore the cold cap throughout. I'd cut my very thick waistlength hair to mid back length beforehand as couldn't bear to cut it short.It thinned a bit on top but I still had a good head of hair on the FEC however after my first Tax I was attacked by a lunatic and within days the lot came out - didn't even have a hair up my nose!!..but I'll never know if it was the nutter or the Tax!! Good luck with your treatment.
Josie xx
Hi Jo,
Another good news story for you! I was diagnosed about same time as Horace, and I had large 5cm tumour with 14 lymph nodes involved, now 4 yrs down the line and no reoccurance!! I believe that the use of Tax for TN has really helped our chances, so best of luck with your treatment.
As for chemo and hair loss, I really think it is as individual as the women who have treatment! As you saw in earlier posting, someone kept hair with FEC and lost it with Tax. I was other way round! I lost it very quickly on FEC, but it started growing back when I was on Tax.
Some think cold caps are brilliant, others have poor response to them ,and they do prolong the duration of treatment, and you can get head aches. But again, a very individual choice, so I guess I am not being very helpful Here!!
With my very best wishes, and hope all goes well, for you and your little family.
Jax
Hi Jax,
thanks for the words of encouragement. I do seem to have a lot to learn, what are FEC and Tax short for, I realise that they are some type of chemotherapy. Someone should publish a cancer dictionary!
Jo x
im another TNBC i had no nodes but did have LVI 2 years ago following an ER+ cancer 3 years before that... didnt have the usual chemo given for TNBC as i had E-CMF.
i was at study day last month which had the most recent TNBC stats and these showed that if you survived for 6 years post TNBC then you are considered cured.... thought it was very reassuring.
FEC = 5 flourouricil, epirubicin, cyclophosphamide
T (tax) = taxotere which is the trade name for doxetaxel
Lulu xx
Morning all.... This time last year I was diagnosed with TNBC and went through 6 FEC which I have to say wasn't easy and then rads... A year later I feel great.... Got two stone to lose and hair to grow but I'm getting there with running walking and laughing. I would say in my experience life is far too short to be worrying cause that's what got me there in the first place!
Live life to the full, be happy and laugh. Sounds good doesn't it but believe me I didn't laugh at all last year. I was in a very dark place worrying, reading stats etc but I could get run over by a bus tomorrow.
Enjoy your day my fellow friends....
X
Hi - My wife is also TNBC - She was diagnosed in June last year at 40.
She opted for chemo first to avoid Mastectomy. 4EC, 4TAX. Surgery just before christmas, and she finished radiotherapy on Friday last week, drawing the active treatment to a close.
TNBC is scary, but our onc says it gets a bad rap. It tends to respond well to chemo. Then after radiotherapy no treatment (and resulting side effects) dragging on for years.
Paul.
Hi Jo,
Another triple neg survivor here! I was dx in August 2009, had surgery plus back in to increase safety margins, 6 x FEC chemo and then rads which all finally ended in march 2010. Had first mammo and check up in September 2010 and all well!
As the other ladies are saying, chemo IS nasty but IS do-able and triple neg responds well to chemo, so go with it and bear it, knowing you are zapping it!
there ARE good sides to being triple neg is that we dont have to cope with 5 years or so of tam or other hormone treatments which can knock you out and apparently once we get to between 5-8 years (depending on which research you read) there is very little chance of it coming back and we are no more at risk than anyone else who hasnt had the dreaded bc!
Good luck with your treatment - there is fantastic support here on this site whenever you need it. Everyone is so willing to help - I couldnt have got through without it!
Karen xx
hello
)
another TNBC here, I was diagnosed in 2008 and had high node involment and was actually given a 'poor prognosis' but hey ho still here
Lulu that info very reassuring
try not to go delving into the depths of the internet on TNBC as a lot of it is out of date and info 'like wot' lulu says is good
rhian x
Hi Jo
Sorry to hear about your diagnosis, none of us want news like that....but now for the good news! I was diagnosed May 2005 at age 48 with grade 3 triple neg 3cm bc and had lumpectomy, chemo and rads. Excellent margins, no node involvement and prognosis was very good. Unfortunately another tumour popped up 4 yrs later in Aug 09 in the same spot in same breast picked up by my routine mammogram...but only 1.4cms and this time turned out to be a new primary as it was weakly positive! This certainly was a shock as no history of cancer in my family going back generations.
I then had a mastectomy a month later but no further need for chemo but now on Tamoxifen which my Onc said would benefit me more, he also said that this was better than the first time as it was caught very early and the fact that it wasn't a recurrence of the first one but a new primary, meant that the treatment I had first time round for the triple neg one i.e. chemo/rads was still working!
Last month I had my lat dorsi flap reconstruction and feel absolutely fantastic! Life is good...and I no longer fear the future. There are lots of ladies like me on here and I'm sure you'll get a lot of encouragement but there's nothing worse than the initial shock of being told you have cancer and I can fully sympathise with you...but try not to worry, things will get better I'm sure. I wish you all the very best and sending you a big hug.
Take care and lots of love
Bev xx
Hi Bev,
how blinking unlucky! I didn't know your body was capable of such horrible things - giving you one type and then another! So pleased to hear you're doing well. I'm going to see the oncologist tomorrow to find out when my treatment starts - I'm starting to panic. I don't want to lose my hair,and am worried about how I'm going to look after my baby
take care
Jo x
Hi Karen,
thanks for the words of encouragement - it's good to hear some positive stories as all you tend to hear in the press are the bad ones
keep smiling
Jo x
Lulu that is terrific-the Canadian research showed 8 years rather than 6.I think taxotere,horrid though it can be,is a great stride in the treatment of tnbc.
Valx
Hi,
just been to see my oncologist and I am to have 6 doses of EC (epirubicin and cyclophosphamide) can anyone tell me why I might be given these drugs when some others are given FEC or Tax (hope that's right) Any help would be appreciated.
Jo x
They dont always use taxotere if you have no nodes involved as they can only use it once in a lifetime, and as tn has so few backups ,if the cancer does recur,some oncs like to keep it in reserve in case it's needed.
lots of women who have negative nodes who are triple negative do still have taxotere as it still recurs more often than those with other types of breast cancer, however the majority of women diagnosed with node positive or node negative triple negative disease do well.... and many health boards use the node status as a cut off between getting taxotere or not as there is no national guidelines so its down to the individual consultants to decide what is best for you.
taxotere is considered the gold standard treatment but it does vary across the country... i didnt get taxotere either even though i requested it and had different chemo to the one you are getting too i had E-CMF... the E is epirubicin and it works particularly well with triple negative breast cancer as well... the good thing about your regime is you are getting 6 doses of epi (i only had 4).
the treatment they give is the optimum treatment that they can give without causing unnecessary toxicity but reduce the risk of recurrence or progression... they obviously think that for your particular cancer (and they are all very different) EC will reduce your risk of recurrence significantly.
the epi makes you pee pink and its that chemo which makes your hair fall out too normally from around day 14-17... the C is cyclophosphamide and that can make you get a pain in your nose and face while its being infused.
good luck
lulu xx
Hi Lulu and Horace,
thanks for the answers, as you say everyone seems to get something tailored to their exact diagnosis. Don't like the sound of the pink pee and the pain in the nose and face! Had a feel of a cold cap and I don't know if I could stand one my head - might give it a miss.
Jo x
and the 'f' can give you a very odd sensation down below
When I had chemo I had private health insurance which is why I got taxotere.The NHS hadn't licensed it then for primaries though there were some trials going on.
Valx
Hi All
Just having a read through some of the comments regarding the use of tax. Find it all a bit confusing. I was diagnosed 3yrs ago with inflammatory triple negative BC, After FEC, mastectomy and radio, I was told that I had 4 out of 8 lymph nodes affected but had been removed during surgery. Alas in Jan 2011, I was told it had returned to my sternum, lung and lower neck/shoulder nodes. I am currently on a clinical trial involving taxotare and carboplatin. I have been given tax at present (3rd dose down, 3 to go) but does/has anyone had carboplatin?
Hi lila
Im praying this response continues...
I'm stage 4 triple neg also. Iwas dx jan 2010 + had a recurrence within weeks of finishing chemo (fec + tax so tax didn't do it for me). I've currently got mets to chest wall + superclavical nodes + started carboplatin at the end of jan. I wasn't eligable for the TNT trial which you are on because I'd aleady recently had tax. Carbo is easy compared to fec + tax, minimal side effects just a bit of fatigue, mild tummy probs, haven't lost my hair etc. I've just had a ct scan to check how treatment is going + I'm delighted because there has been no progression + my nodes have shrunk significantly after just 3 treatments
Are you having a progress scan mid way through treatment? Tax has an excellent reputation + my experience was VERY unusual. Wishing you all the best hope it blasts the little f*ckers
tina x
Hi Gingerbud
Just had my scan today. Get the results next week. All will depend on the results for the TNT trial. Fingers crossed the tax is working. Still managing to go to work at the moment but will be giving it up in a couple of weeks as I'm getting really bad neuropathy in my hands and feet and have been told that it will get worse. Other than the neuropathy and tiredness, I have had very little side effects with the tax compared with the FEC. Even my PICC line is behaving itself. Had a hick line last time which was a nightmare.
Must admit I hate the dexamethasone regime before and after the tax. I become a right moody bitch. My 10yr old jokingly says things like 'ooh mummy smash' and mummy angry' as if I am the incredible hulk, it does help as I can only laugh at him when he says it. Bless him.
I am so pleased to hear that the carbo is working for you. Even better that there is less side effects. Hope the carbo continues to do its job and fingers crossed.
Lila xx
Hello there
I`ve just been diagnosed with IDC - what does triple negative mean?
I`m concerned about the operation ahead.
Best of luck x