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Thank you BCC!!

72 REPLIES 72
drabble
Member

Re: Thank you BCC!!

thankyou janet,i had a 17mm grade 3 cancer with 1 lymph node just pr pos,readin all this has made me scared of ny future,havin 6 fec on my 4th tomorrow just havin a bad day i have 4 childrten and i just want to see them grow up xxxx

Janet_BCC
Member

Re: Thank you BCC!!

Dear drabble,

Breast Cancer Care have a booklet "Understanding your pathology report" which may help you understand some of the terminology and treatments offered. You can download a copy by clicking on the link below. I hope this helps.

http://www.breastcancercare.org.uk/upload/pdf/pathology___feb_08_0.pdf

Very best wishes

Janet
BCC Facilitator

drabble
Member

Re: Thank you BCC!!

im just pr pos what does that meen,the onc said i can have hormone treatment but it wont make alot of differance

Dae
Member

Re: Thank you BCC!!

Hi Little H and everyone,

The sun is shining today, I feel a bit stronger and life looks brighter! I suppose sometimes we have to kick and scream at whats happening to us, a release valve or something. As Clare says no point worrying about the triple neg issue, whether good or bad, thats what we are and just have to get on with it. Hoping to get out of the house today, just past the front door would be nice, haven't been able to since last wed chemo because i feel so dizzy. Bad night last night, does anyone else get really bad heartburn? I got it after 1 week last time too and in spite of medication got it again last night so very tired today! May wend my way into the back garden later and have a snooze in my husbands hammock!

take care of yourselves and stay strong.

Dae x

RhodaBee
Member

Re: Thank you BCC!!

Hi everyone, not posted on this thread before and not really talked about my dx, but I'm triple negative too. My onc didn't make too much of it, I think the hospital sees it as differemt not worse and that is the way I'm trying to think of it also. I had chemo first 4 ec, 4 tax then had a mastectomy with node clearance 3 weeks ago. All nodes were clear which was a great boost. Waiting for rads now to complete the treatment. I find it a real help to exchange notes with all of you fantastic ladies.

Love

Clare

Little_H
Member

Re: Thank you BCC!!

Dae,

Don't apologise,or think that you're alone,for one minute.We're all here for you & you will get through this.
I'm triple neg too,grade 3.I had my chemo first, 4xEC 4xTax,then WLE and I've just had no.13 of 19 rads.
I had a bad time on EC and remember thinking "I don't think I can do this" but somehow you do get through it.
Having a supportive family & friends definitely helps, but you feel as if you want to protect them or that you're always complaining so tend to keep it all in.
So,vent away on here, no-one's gonna judge you,we understand more than most what you're going through and we know that you will come out the other side.

Sending you big hugs,((((( ))))))

Little H xx

Dae
Member

Re: Thank you BCC!!

Hi all

Just been reading through these posts as I was confused about this triple negative issue, the docs only told me that the tests showed that my tumour was oestrogen neg and HER2 neg, I know the 3rd is progesterone and assume that was also neg but don't know. I originally thought that to be neg was good as otherwise the cancer was more aggressive but some of the things I've read say the opposite. it really is all a lottery isn't it. I had a WLE and all lymph nodes removed end of june, grade 3, had 2nd Tac chemo a week ago, have had very bad side effects, feel so weak and alone and wonder if its all worth it, maybe I should just stop treatment, enjoy life for however long I have (I WAS a very fit and active 58 year old) because at the moment I have no life.

I'm normally very positive and upbeat but this has knocked the stuffing out of me, I cannot believe how much my life has changed in such a short time. All that is keeping me going is my 3 grandchildren at the moment. I want to shout, scream, hit today but how can I do that to my husband, daughter, friends, who are all doing their best for me but as I said, I feel so alone. What a miserable cow you must be thinking, yes I agree and am telling myself to snap out of it and pull myself together. It justs helps to let it out how crap I feel. Sorry folks.

Dae x

horace
Member

Re: Thank you BCC!!

Hi Nonny-triple negative can be a lonely dx cant it but this thread certainly helps.
Love Valxx

Nonny
Member

Re: Thank you BCC!!

Hi all
Just to add my tuppence worth. I was diagnosed January 2008 in my right breast, biopsy showed grade 3 with lymph nodes affected so I opted for chemo first and was given six lots of TAC at three week intervals. After the second dose there was no sign of my lump, which had been 6.5cm x 4.5cm great I thought, great it's all gone. At this point I was also told I was in the minority as my cancer was triple negative, which I thought was a good thing, until I did the research. I had already decided on a bilateral mestectomy as I had a previous scare in the left boob in 2004 dealt with by a WLE and no further treatment. I had an axillary clearance on the right and was told that 5 out of 19 nodes were affected with spread to surrounding tissue but they had got clear margins, chemo had not affected this cancer and oncologist did not know why. This was followed by three weeks of radiotherapy. I have just been given the all clear following a battery of tests and scans since February this year as I have a pain in my back below my ribs on the right side which does not seem to be getting any better. I was very down when I read about triple -ve but there really does not seem to be any point in dwelling on it. I have not asked my Consultant for a prognosis, I have worked it out for myself and I have no intention of sitting wondering what will be. As my husband keeps telling me, I could walk under a bus or crash the car tomorrow (cheerful soul). Nobody knows what is around the corner, I take it one day at a time and make the most of everything I have. What will be will be, worrying changes nothing. The only thing that has changed is that I have been brought face to face with my own mortality so now have a different perspective on life which is for living. There are a few words my mother was fond of quoting that I find help me when I get a bit down, "God grant me the serenity to accept things I cannot change, the courage to change the things I can and the wisdom to know the difference".
Love to you all
Nonny

bud932
Member

Re: Thank you BCC!!

Hi Anne

Thanks for that i will give the kelp a try. Anything is worth a try and it might just help. Mammogram was ok today and not too painful. The worst bit was the pressue on my underarm as the nerve pain was awful the way my arm was placed. now a torturous wait for the results to come back.

love Gail xxx

bydand
Member

Re: Thank you BCC!!

Hi Gail

Good to hear thinks are going well for you and good luck with your check up.

I posted a link about nails a wee while ago and some clever woman advised taking Kelp extract which has made a huge difference. My nails and toe nails were splitting and breaking like yours but have vastly improved now.

All the best Anne xx

bud932
Member

Re: Thank you BCC!!

hi there

I havent posted on this for a while and just wanted to let you all know that im still about!!! I am 6 months post surgery and cant believe thats a year since I had mydiagnosis. Today I go for my 1st mammogram as part ofmy 6 month screening and not sure how i feel about it. want it but dont want it! Waiting on the result will be torture as not getting result tili go to the breast clinic on the 28th. i think i will have to phone and try and get the results before that. I normally work in the hospital (still off sick) so my collegues can check the results computer for me if need be. Other than that i'm well. Still taking a lot of pain killers and gabapentine for nerve pain but slowly trying to cut them back. Toe nails slowly recovering, they grow back then bits fall off them again. Hair thicker than it was before but much darker (and greyer!!). Most of the time I feel positive but still have weepy days when ithink why me... what next...how long do have. I see a counsellor now who is fantastic and has really helped me.

I hope everyone elseis feeling well and still hanging in there.

love to you all

GAIL xxxxxxxxxxxxxxx

horace
Member

Re: Thank you BCC!!

Just to add my tuppence worth-I have had 3 family members with bc in the last few years.The two with hormone + bc have since died of bc secs.The third who had tnbc is still NED after 7 years.Like so many of us I was terrified when I looked up tnbc and after 2 and a half years am still scared but no more scared than I would have been had I been +++.At least we dont have to worry about side effects of supplementary drugs[though I would like the extra safety net].
Love Valx

bydand
Member

Re: Thank you BCC!!

Hi Kittyw

I totally know what you mean about not burdening loved ones - I still haven't mentioned tn to mine as no point in worrying them more.

Like you I went through a downer when I first found out about tn but now feel as positive as I did before. There is no good bc and tn does not necessarily have a worse prognosis. Some of the women on the site have so much knowledge and if you read their posts it will hearten you. JaneRA put a good post on recently exploding the myth of tn being so much worse than other kinds of bc, in fact it has less chance of recurrance after 5 years than others. I'm sure some of the other women will post the stats to support you soon.

I finished my rads 6 weeks ago and am feeling great. None of us know what's around the corner but there is no way I'm going to let this bloody disease get in the way of me living my life. I do hope you are feeling better soon and celebrate finished your chemo and being at the last stage of your treatment. Keep posting we all know how you feel.

Anne xx

kittyw
Member

Re: Thank you BCC!!

Hi everyone just back from rads planning and started to read these posts. I honestly thought i must have been told i was triple negative and given relevant info and that I hadn't taken it in. However like a lot of you people I was not I had to research this for myself. I did not do this untill about three weeks ago when I had finished chemo.Prior to this I had my head in the clouds thinking cancer cut out! affected nodes removed! chemo finished!just rads to go! then Bobs your uncle im well again.Spoke to onc today who finally told me how bad my cancer could be and offered me counselling.I feel like a bubble has been burst and Im so down. I can only think negative thoughts at present. i don't know if I would feel any better had I been given info at diagnosis. thanks for letting me ramble dont feel able at present to burden loved ones with this.

northenlight
Member

Re: Thank you BCC!!

Hello all, I just wanted to add my Mums experience. She too was told she was negative to the hormone tests and like me assumed this was a good thing. The words "triple negative" were never used. I now wonder if she had had this information whether she might have opted for chemo first, or to have the mx and full clearance at the same time (which she now has to go back to have). She has very much wanted to have the maximum treatment and she had a big lump so I think that even with the risk of lymphodema, and without being sure of whether the lymph nodes were invoved (turned out to be 1/8) she might have gone for it. On the other hand had she known she might not be feeling a positive as she is (dont think she has realised what 3-ive means). Anyway I supposed looking backwards is not helpful.

Wishing you all the most positive outcomes,

NLx

hope
Member

Re: Thank you BCC!!

Hi all,

I too have just found this thread and like many of you was not told by my consultant that my cancer was triple neg but had to work it out for myself which I did from these forums and it was a bit of a shock. It was 3 weeks ago today that I went to my doctor with a lump I had discovered two days earlier and with a letter which had arrived that morning recalling me for further tests following the results of a routine mammogram the week before (I'm 54 so am now in the system). A biopsy showed grade 3 cancer, tripele negative thought these words wern't used and I just thought that it sounded good being negative and I wouldn't have to take the hormone treatment! I had a wle and removal of 5 nodes last Thursday and am still waiting for my results so am in limbo somewhat not knowing if it has entered my lymph system, what size lump was removed and if clear margins were achieved. Maybe tomorrow I might hear something. It would seem that the medics have their reasons for not describing our cancer as triple negative but I would love to know what they are and will ask my consultant at my next meeting.

I find the discussions regarding to chemo or not to chemo interesting as I imagine I will have to face this too.

I feel I've rambled somewhat but am pleased to find all of your folk as a resource........sorry that we're all here of course.

Lee xx

ajaytee
Member

Re: Thank you BCC!!

Hi Everyone
I am new to this site but felt I would like to sign in on this thread as it has just been confirmed that I am triple negative.

I was diagnosed in March with IDC 6cm, Grade 3. Had a left mastectomy and SNB which was clear (first bit of good news). I started chemo yesterday and am having 3xFEC and 3xTAX before radiotherapy.

To be honest, I was pretty sure I had cancer as soon as I found the lump (I am 61)but the TN came as a complete shock. Having read (yes, probably too much) about it on the internet and the increased risks, poor prognosis etc. I have had trouble coming to terms with that bit of the diagnosis. I am so grateful to have found somewhere where I can read messages from people who are obviously living positively with and surviving this special condition.

Thank you so much for providing me with the encouragement that I too can cope with this disease.

AJ

bydand
Member

Re: Thank you BCC!!

Hi all

Finished rads yesterday and should be pleased but it feels strange that that is it as far as treatment goes and I feel as if I am hanging in mid air. Thanks Martina tt is so good to hear of someone coming through this. Pleased to hear you back on track Gail and have the support of friends and family.

All the best Anne xx

Little_H
Member

Re: Thank you BCC!!

Hi Martina,

Thanks for that,had chemo yesterday and feeling rough today so it was just the boost I needed,

Love Helen x

ardmhuire
Member

Re: Thank you BCC!!

hi all
just on a positive note. i met with a woman three weeks ago who was diagnosed with TN 10 years ago, when it wasnt really talked about. she had 4 doses of chemo, she cant remember which and radiotheraphy. it is now 10 years since her dx and she is all clear of the cancer, she also has a 4 year old daughter which wasnt planned. she look well and healthy and she went through this when we didnt have thses forums for help. she is 36 now ans the picture of health. meeting her done a lot for my positiviy. it was really great to meet someone who beat it. it gives us all hope.

martina

bud932
Member

Re: Thank you BCC!!

hi there

Just want to say im feeling a bit more positive this week than the way i felt last week when posting my comments. I have had a good week and with good friends family and work colleagues around me i will get through it and start to move on. Many thanks for the kind words and encouragement.

love
Gail xxxx

bydand
Member

Re: Thank you BCC!!

Hi Gail

I know exactly what you mean. I think that when most of us were diagnosed the words 'triple negative' were not used and we found out for ourselves what exactly that meant. Like you I was devestated when I first googled tn and went through a worse time than when originally diagnosed, also hiding my upset from family as no point in worrying them more.

Thankfully I am now feeling as positive as I was before and getting on with my life. Like you I have just started rads and am so pleased to be finished chemo. I suppose I just keep focusing on the positive - I feel good, summer's on it's way, my hair's growing back, daughter's birthday next week etc. I'm not going to let worrying get in the way of living.

None of us know what is around the corner and life should be enjoyed to the full. I do hope you are feeling better and get back to your positive self soon.

Anne xx

Sam_BCC
Member

Re: Thank you BCC!!

Hi Gail

It sounds like you're feeling pretty down at the moment. It might help to talk about how you are feeling to one of the BCC trained members of staff from the helpline. Here you will be offered a 'listening ear' and can share your worries and concerns with someone who either has experience of breast cancer, or is a breast care nurse.

The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 10am to 2pm.

I hope this helps.

Kind regards
Sam (BCC Facilitator)

bud932
Member

Re: Thank you BCC!!

hi there
My name is Gail and im a 45 yr oldmother of a 10yr old boy. I was diagnosed with tnbc in july last year. I have had a lumpectomy and node clearance. They took 9 nodes and 4 were positive. Good clear margin obtained thankfully. I have just started my rads and have 23 sessions still to go. Its good that there is finally a thread for tnbc. Like others i thought not having to take the hormones was a good thing until i started reading into tnbc. I actually had to make an apt with my oncologist as had never been told this is what i had and it felt a bit like having my diagnosis all over again. She really pulled the rug out from under my feet going on about high risk poorer prognosis etc and have been on such a downer for the last coiuple of weeks. I want to be positive but its very hard and im finding it very difficult to get my head round it all. Im hoping that this web site and the inspiration from those of you in the same boat as me will help clear my head and get me on the positive route again. i look forward to hearing from you all.

Gail xxx

Nonny
Member

Re: Thank you BCC!!

Hi All
Diganosed end January 2008, I decided to have chemo (TAC) first before any other treatment and prior to being diagnosed triple negative, all I knew was I had a very large (6.5cm) tumour and there was definite node involvement. I just wanted to zap anything that was floating in my system. When I found out I was triple neg, I in my ignorance, didn't realise what it was until I researched it, then I was glad I had opted for chemo first. I decided on a bilateral mastectomy with axillary clearance five nodes with surround tissue affected out of 19. (I'd had a lumpectomy for DCIS in my other breast in 2004 with no other treatment.) I was told the chemo had completely destroyed the tumour in my breast, it had disappeard but it was still very much alive in the nodes and surrounding tissue. When I queried this with my Onc he said he didn't know why the chmo had killed one place and not the other. Then I had radio in September. I know I have done everything I can to stop it recurring. I am drinking Japanese green tea, taking vitamin D3 eating blueberries (God aren't they a price now) and almonds. I am having some liver problems at the moment and am waitng for an ultrasound, my GP is almost certain I have gallstones, I am praying he is right. I am hoping I don't turn into a hypochondriac worrying about every little ache and pain but at the moment it is very difficult to distance myself from the cancer. Perhaps as time goes on it will get easier.
God bless
Jennie

horace
Member

Re: Thank you BCC!!

Like martina I based my decision to have chemo on the high risk of recurrence in first 3 years.I went into it aware of the chance of chemo/rads related cancers in the future and of permanent damage from the chemo itself.I have peripheral neuropathy and no eyebrows 2 years after finishing.I had awful side effects from taxotere but I would do it all again.For me it would be pointless to wait for a recurrence before accepting chemo.I wanted to give myself what I believed to be the best possible chance of coming in the right side of the 10year survival stats.If the cancer doesnt come back I will never know if that is down to the chemo or not and if it does I will know that I did what I could.I am now 65 and with all its ups and downs I love my little life.Good luck to all of you.
Valxx

ardmhuire
Member

Re: Thank you BCC!!

liz i too was given the option of having the chemo as it only offered me an increase of 3.3%. i will be having my third of six dose next wed. i really didnt want to have it and have had a hard time after each dose but as the chances of recurrance are so high in the first 2 to 3 years i wanted to know that i had done my best to fight it. like julie says, it is personal choice but my husband and kids wanted me to have it too. what would i say if i didnt have the chemo and it came back. it would feel like i had let them down by not doing everything i could. i just couldnt do that to them. my onc wouldnt say either way what i should do.

just follow your heart.

take care
martina

julie72
Member

Re: Thank you BCC!!

Hi everyone,
I was diagnosed the day after my 36th birthday with grade 3 IDC. After the lumpectomy and node biopsy the results were a 16mm tumour with no node involvement. Triple negative, stage 1.
I was told I should have chemo and rads, but I decided to opt for not having chemo.
It's a long story and I have posted previously about this, but I just don't agree with chemo unless it's totally necessary.
I don't wish to put anyone off who is having it or who is thinking about it, but I worked for the pharmaceuticals for 10 years and I know a lot of what they don't tell you!
Don't get me wrong, I'm not saying it doesn't work, I just think that personally, the percentage given to me of the benefit of having it, just didn't weigh up against the cons. If my nodes had been involved then I think I would have had to have a rethink.

I think it's difficult as we all have that deep ingrained thing that chemo is what you have if you have cancer, but especially with triple negative there isn't much else that they can throw at it, but again all the information that they can give you is statistical.
I guess no one knows as to whether they have made the right decision and it all seems a bit of a gamble that we all hope will work whatever our decision.

I must admit I had a lot of negative, almost bullying tactics from my onc when I said I didn't want to have chemo. I feel that although they feel that they are trying to give us the best options, I think that it is unfair of them not to respect my opinion and not helpful.

Unfortunately this is one of those situations that you hope you will never have to be in, but when you are, no one can make that decision for you, and you have to go with what feels right to you I guess.

LizB
Member

Re: Thank you BCC!!

Hi everyone.
I was diagnosed in later January with a Stage 3, triple negative tumour. I had a lumpectomy and full axillary clearance in late February. The consultant told me there was no node involvement and that the margins of the lump was good.
I am now waiting to see the oncologist to discuss further treatment, radiotherapy seems to be a given but there will be a discussion on the statistical odds on chemotherapy extending my survival for 10 years. Apparently the chemo is optional and it will be up to me to decide whether to have it or not. It appears that the odds can be as low as 2%.
I have made some changes to my diet and lifestyle but would like some thoughts from any of you out there.
I'm confused over being given the option for chemo. Like all of us I want the best possible chance for survival!
Thanks,
Liz

trezann
Member

Re: Thank you BCC!!

Dx Jan 08, triple neg with tumour size of duck egg, no lymph nodes affected (they took out 20) and chest wall clear. Bilateral mastectomy Feb 08 (just wanted rid of both breasts in case of recurrence) and 6 chemo sessions from April 08. Saw onc cons in Sept and no further check up till Sept 09. Asked to see surgeon before then and have appointment for April. Feeling great now and beginning to get back to walking after being exhausted for ages. I am very overweight and have to lose at least two stones to go on waiting list for reconstruction. This is going to be hard but will defo try low fat diet (again) and hope it comes off this time.
Thank goodness for this site. I have just plucked up courage to go on to find out more about triple neg as all I read early on was so depressing. Onward and upward. Keep up the good work.

jantharra
Member

Re: Thank you BCC!!

Hi Little H, thanks for the congrats and the corny joke!!!

Reading about this caused it that caused it, well to be honest if you listend to all the supposed triggers you would eat nothing, go nowhere and have no life. I do belive it's environmental personally, but have stopped beating myself up that I 'gave' it to myself by doing x, y or z now. I have it, it's a sh***y straw but now I have to enjoy life while I still can and not get hung up on the why is how I feel. I do appreciate not everyone does though and sometimes it's easier to blame something as an outlet for the natural anger at being in this place at all.

Nikki

bydand
Member

Re: Thank you BCC!!

Thanks Val the night shift theory also seems to be linked to hormone positive bc. Theory being that light at night suppresses the normal nocturnal production of melatonin by the pineal gland, which in turn might increase estrogen levels in the body.

Anne x

horace
Member

Re: Thank you BCC!!

I think the dairy thing is more for hormone positive bc as it is related to the artificial hormones given to cows to stimulate milk production.The low fat one is pretty well documented I think.
Valx

bydand
Member

Re: Thank you BCC!!

Hi Helen

Must look into the night shift more as I am due to go back to my job at some point after finishing rads and it is a worry if this could be a cause. I think not knowing what caused it is the worst thing but you could beat yourself up going over everything in your life.

I have not done much research but think think the low fat diet has been quite well researched, not sure about no dairy. Anyone point me in the direction of good research? I know exactly what you mean about conflicting advice!

The sun is shining today as well so I plan to get out and potter in the garden. Things always feel better when the sun shines.

All the best Anne xx

Little_H
Member

Re: Thank you BCC!!

Hi Anne,

I read the article in the Mail re compensation in Denmark for nightshift workers etc. I've been a stewardess for over 20 yrs and have heard all the comments about flying and breast cancer,I don't know what to think but it is a worry.
Has anyone heard of Jane Plant,who advocates not eating any dairy? I must say I get a bit fed up with all the conflicting advice...eat this...don't eat that! Sorry,in danger of turning into a rant and I've had such a lovely day in the countryside enjoying this sunshine.

Love Helen x

bydand
Member

Re: Thank you BCC!!

Hi all

Thanks for the info Val and Jane I will look at my diet and reduce fat and I can't wait to start exercising again. I definately need to feel I'm doing something positive to help myself and lose the weight put on during chemo. Chocolate has never tasted so good before!

All the best for your chemo Helen - yes it feels great to finish and I was lucky I didn't have too bad a time hope you are the same.

Saw a brief clip on the news last night about nightshift causing bc haven't had a chance to look into it yet but have done nightsift for many years anyone else a night worker?

Anne x

JaneRA
Member

Re: Thank you BCC!!

There has been some reputable reserach that a low fat diet and exercise reduce the risk of cancer returning in er- and pr- early breast cancer. As far as I know no research done on Stage 3 triple negative breast cancer and diet.

A low fat diet is generally healthy.

Many women feel better for taking some 'control' by changing diet. Others like me feel its a bit like shutting the stable door afterwards. I got a recurrence but I was high risk and so never thought diet would make any difference (though used to eat reasonably well...recently chocolate has taken over to compensate for continual chemotherapy failure...but thats another story.)

best wishes

Jane

Little_H
Member

Re: Thank you BCC!!

Thanks so much Val & Jane,

I've calmed down abit today and you've helped put things into perspective.I'll still mention it to my oncologist next time I see her but don't feel so alone after reading these posts.
Congrats Anne on finishing your chemo,I'm like you though,thought I had a reasonably healthy lifestyle but wonder if there's anything I can do to reduce the risk of it returning.I don't relish the thought of constantly looking over my shoulder,will I always be wondering is it gonna come back?
Lots of love

Helen x

bydand
Member

Re: Thank you BCC!!

Hi all

I was diagnosed in September last year 17mm tumour, grade 3 with 3 nodes affected, full node clearance. Just finished 3 fec/3 taxotere and first I knew about triple negative was when I saw a different oncologist at last chemo session who used the term. (I had been told tumour was not hormone sensitive). I must say when I first googled it I was devestated but have picked myself up again.

I have just finished my chemo and starting rads beginning of April. I can't wait to get excercising again as I was a regular swimmer, anyone know if you can swim when having rads?

Good to have this threat and worst thing for me is not knowing what I can do to minimise risk of recurrance. I think I have a healthy lifestyle, eat well, excercise etc so at a loss what to change.

All the best. Anne

JaneRA
Member

Re: Thank you BCC!!

The only thing I'd add to Val's answer is that 'triple negative' is a very new term...only really been used for the last 5 years...and some oncologists are hesitant about using it as a term, because it suggests that 'triple negative breast cancer' is a 'type' of breast cancer. Its not...there are several different kinds of triple negative breats cancers...yes they are all er- pr- her2- but they are not all the same. It is likely that triple negative cancers have other kinds of 'receptors' which have not yet been discovered (well some of them have but no distinct treatments yet)

Triple negative cancers are not necessarily more aggressive than other breast cancers. As Val says all kind of factors play a part.

Jane

horace
Member

Re: Thank you BCC!!

Little H yes you are right about there being no follow up treatment for TN.As for the rest its a bit mixed.JaneRA has most of the answers re TN but I'll give it a go!
1)in the first 3 years it tends to have more chance of recurrence than hormone+ cancers.
2)from 3-5 years that levels out until by 5 years the risk is equal.
3)after 5 years there is slightly less risk of recurrence than the others
4)after 8 years it is very unusual indeed for TN to recur
The real problem is that if it does come back as secondaries there are fewer treatment options for TN,
however HER2+++ patients are slightly worse off because although they have herceptin their tumours tend to be quite aggressive and herceptin isnt always successful in squashing the primary bc,for secs however they do have some good chemos available.
There is no good bc and as you see none much worse than the others.The most important factors are node involvement,size of tumour,grade of tumour,margins and vascular invasion..I give up really!!!
Love Val[TN dx Oct '06 so far so good]

Little_H
Member

Re: Thank you BCC!!

Hi Everyone,

I received a copy of my oncologists report to my GP yesterday and having had a proper read of it today I've realised that I'm triple negative too,but no-one has said it to me!
I'm on 4x EC then 4xTaxol,had first chemo 10 days ago.I thought when all this treatment was finished I'd be taking something such as Tamoxifen for 5yrs but am I right in thinking there's currently no tablet for TN? And is there a greater risk of it coming back?
I'm having a PICC put in on the 23rd(day before next chemo)so hopefully I'll get the chance to ask about it,but don't know when I'm seeing my onc again.Can't help feeling abit annoyed that I wasn't told and I've had to work it out for myself.
Congratulations Nikki,your OH sounds like a very romantic geysir....get it?Iceland?....sorry that was a terrible joke!!

Love Little H

jantharra
Member

Re: Thank you BCC!!

Hi Everyone,

First diagnosed in March 2007 just past my 39th birthday. Stage 2 Grade 3. Radical mx as tumour close to chest wall. Triple Negative. 13 nodes removed / 9 cancerous. Chemo was 4 FEC and 4 Taxotere followed by 20 rads.

All good until Oct 2008, when rediagnosed with a local reccurance. Subsequently updated to incurable. No further mets.. yet!

Had portocath fitted (wonderful thing) then started Carboplatin in early Dec '08, had no response and the tumours progressed quickly despite having had a clear scan post surgery. Have them in the lymph nodes across chest and collar bone, including them pressing on my throat. In Jan '09 switched to Gemcitabine plus Taxol on 21 day cycles with both day 1 and Gem day 8.

Just had 3rd cycle scan and the tumours are stable, but no shrinkage, not surprised at this as the comparative scan was done when the disease was running unchecked through my body. I am hoping the next one will show some kind of reduction.

Have been away from site for a few weeks, work been manic and also went away on holiday to Iceland, where my wonderful OH proposed to me, under a sky full of the aurora borealis... happy is an understatement.

I would like to add my thanks to the BCC team for listening and giving us this thread and those members who campaigned for it as well.

Hugs to everyone.
Nikki

renee
Member

Re: Thank you BCC!!

meant to say does give us less positivity

renee
Member

Re: Thank you BCC!!

Hi Martina,
I'm triple-neg too, i was dx oct 07, but as this was my 2nd time was only offered chemo and that worried me as i know i don't have anymore options other than more chemo if it comes back. I was given 4epi and 8cmf, and now i'm on a trial (react trial) don't know what good it will do but can't lose anything and it is a bit of a comfort even though it might just be sugar i'm swallowing. I honestly do'nt think it matters what type of bc you are dx with, mentally it does your nut in. In our case because we are in a minority 15% it doesn't seem to give us less positivity, i myself don't feel positive at all and i know i shouldn't be thinking like that but i can't help it, i know what you mean by feeling isolated because most people you talk to seem to be taking some form of pills as a safegaurd and although it doesn't give them gauranteed immunity, it does give them that bit of extra hope. So far i don't have secondries but in my mind feel it is just a matter of time, mabe it is because i'm going through it for a 2nd time i don't know, i would like to be able to forget about it for a while at least, but at the moment it is all i seem to think about. I don't talk about it much to any of my family or friends because i feel they do not understand. There you go, you thought you were waffling on, at least on here you are not isolated.
Love Reneexx

ardmhuire
Member

Re: Thank you BCC!!

hi everyone. i wasnt told by my cons that i was triple negative, they told me i was ER negative and a few weeks later that i was HER negative but they never actually told me that my cancer was dif. i read something on one of the forums here and realised that i was actually triple negative. i asked my cons on tues and he said yes i was but never explained why they didnt tell me it had a worse prognosis. when they first told me my results from surgery they said that my chances of being alive in 10 years was 87% and if i had chemo that increased by 3.3%. but they told me chemo was optional and it was up to me to decide whether to have it or not. but i dont understand this cos being triple negative chemo is the best option for me. i asked him why they didnt recommend the chemo when they knew i was triple negative but he just said that as it was only offering 3.3% it was optional. i am very confused now, the percentages they gave me was before they new i was triple negative and although he says that is still the same i am not so sure. i feel that they are just giving me stock treatment and not treating my cancer as dif from hormone positive women. dont know what to do. if i had the money i would go private but that is not an option. i am having 6 FEC and am worried that this is not the best treatment as a lot of women i have read about had 3 FEC and then 3 Tax but what do i know i am just a patient and to question them may do more harm than good. anyone got any thoughts about this. sorry for waffling on. i just feel very isolated cos everyone else i talk to are hormone positive and cant really help.

martina

Nonny
Member

Re: Thank you BCC!!

Thank you Val, I was thinking along those lines but needed someone to give me a push to do it. They don't tell you all the side effects of Taxotere do they? I suppose they don't want to frighten you too much! I was never told about peripheral neuropathy until I got it, was told 'Oh yes, that can happen. It might get better or it might not. If it gets really painful we can do something about it.' I was told my hair would definitely grow back, but I know of some cases on Taxotere when it has not, I am lucky mine is growing reasonably well, the same colour as before but a bit wavy this time, always been dead straight before. My hairdresser days it will probably go straight in time, shame, I quite like it wavy.
I'll speak to my BCN and keep you posted.

Jennie

horace
Member

Re: Thank you BCC!!

Dear Nonny if your oncologist said to phone he meant it!I would use the bcn as first line and at the same time go to see your GP.I found that my problems fom taxotere took a very long time to resolve.I finished in May2007 and for a year had awful back pain in the middle quite high up.Both GP and onc reassured me and it has now gone.I still have peripheral neuropathy in my toes and fingertips,no eyebrows and my asthmatic cough is usually there.But none of this has worsened and things improve very slowly.Chemo also leaves us more vulnerable to arthritic pains.I was 62 at dx and it seems to take longer to get over side effects as you get older.
Good Luck,Valx

Nonny
Member

Re: Thank you BCC!!

Hi all
I am 62 and was diagnosed January 2008 6.5cm lump with node involvement right side. TAC first, six lots last on 6th June then bilateral mastectomy, on 1st July (had a previous scare with LCIS/DCIS on the left in 2004 just a lumpectomy no chemo or rads) and axillary clearance right side five out of 19 nodes affected with some tissue invasion. Advised the cancer was Triple Negative. Then three weeks rads in September. Have peripheral neuropothy in both feet and left had is slightly affected.
Just beginning to get my life back. Hair about one inch long, still no eyebrows, eyelashes very, very short, won't need a bikini wax to go on holiday and it looks like I'll never shave under my arms again! More good days than bad now. Started swimming again, don't think I will get back to riding though.
Had first check up last month, had X-ray because of cough but was clear, thank goodness! Have another in six months. In the meantime however my back at about waist height on the right side has started to hurt all the time, worse sometimes than others, but it is always there I just can't get comfortable sitting, standing or lying down. How long do I leave it before I contact someone about it? I presume it will be my Oncologist I speak to as he did say any problems ring me.
I feel as if I am on my own now, even though both my Breast Care Nurse and the Oncology Department have said to contact them I don't want to be a nuisance and worry them about every little ache and pain.
Any feedback would be appreciated.

JaneRA
Have followed your posts with great interest, your advice and various web addresses have been so helpful.

Love to all
Nonny