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Lulu34
Posts: 4,306
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Because the 10 year survival is 75% this means at least 75% of women with TNBC will be alive in 10 years time and because we know it's pretty much cured by 8 years those 75% are still very likely to be around in 20 years time.... But they have now started keeping figures for twenty years, but they won't be available for a while yet as it's only recently changed to 10 year survival stats.

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Member
horace
Posts: 2,574
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Let me try to explain :smileyhappy: The 10 year survival rate of 75% is based on people dx 10 years ago before tax etc were available.Triple negative breast cancer is at its most risk of recurrence in the first 3 years after dx.If it hasnt recurred by 5 years it is unlikely to do so[no guarantees in bc so 'unlikely'].Much recent research says that after 8 years disease free tnbc sufferers are 'cured' ie that cancer will not come back.This is after treatment with 3rd generation chemos which have been available for primary tnbc for only about 5/6 years on the NHS.Now obviously the 10 year stats are not yet available but evidence from America and Canada is as I have said above.Even my very conservative medical team wanted to discharge me after 5 years clear as tnbc wouldnt come back.It doesnt mean you/I wont get a new primary or a completely different cancer elsewhere but it does mean that after 5-8 years the original tn tumour will not recur.
Those with hormone +++ bc are at risk of recurrence for thr rest of their lives but their overall stats are better because of tn aggression in the first couple of years.
So Sharon-as my[and your] surgeon explained to me -10 year survival means survival for at least 10 years not for just 10 years.They use 10 years for all bc,it used to be 5 but nowadays they are able to talk in terms of 10 years-it is different for tnbc.

I hope this helps :smileyhappy:
Stay Well
Valxx

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Member
silvershar
Posts: 595
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Hi, I hope its ok to jump on this post, I was dx as TN Dec 2010 and last year I had a lumpectomy then FEC - T 3 of each. I understand that my cancer was not hormone related and that FEC T is very effective for TN but I am confused by the survival figures, 75% of being 10 year survivor and if I go 5 years with no recurrance then I can call myself cured, Well does that mean after 5 years I only have 5 years left, sorry if daft thing to ask i just keep reading diff posts and getting myself into a tiz. I have finished my treatment, had 23 rads aswell and now trying to get back to normal, work and study and life in general. I know we are all indivudual but this 10 year survival thing is freaking me out.... I had a mamo in Dec 11 which was my first one after being dx the prev Dec. Any advise welcome many thanks xx

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Member
Lulu34
Posts: 4,306
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Hi Ali
most people with TNBC wont get a recurrence... but the important thing is your having your mammo so if there is anything small lurking there they can find it long before you would feel a lump and can get on with treating it.

its normal to feel anxious around the time of mammos i know i was on tenterhooks waiting for the result of my first one.

i have had a recurrence of a TNBC but its being treated and im due a mammo next month too as i havent had one for 15 months, but not unduly concerned as im having chemo at the mo so sure if there was anything there it would be zapped.

fingers crossed your mammo is normal.

love Lulu x

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Member
Louise_BCC
Posts: 2,183
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Posted on behalf of new user Ali.......

Hiya, I was diagnosed with triple negative breast cancer in 2010 and had FEC x 6 then lumpectomy then radiotherapy. I have two kids , one ,11 and one 9 tomorrow. I have got my first mammogram on Tuesday since surgery, (2011) and I am scared. I was super positive throughout my treatment but recently my mums friend who was diagnosed in 2009 has had a recurrance and a friend is not keeping very well at all with her recurrance. I feel like my life is on hold until I am told one way or the other. Sorry for being so moany! Keep well everyone. X

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Member
horace
Posts: 2,574
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Just felt I should come on to say that I was dx with tnbc in October 2006 and had my 5 year appt in October 2011 at which point I was still NED.I had 4xfec and 4xtax after a lumpectomy [2cm grade2 no nodes].% years seems a long time but you can do it and remember the 10 year stats are inevitably based on people dx at least 10 years ago so before latest chemos etc.
Stay Well
Vx

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Member
Cleosmum
Posts: 18
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Jo have you had your appointment yet - if so hope you don't mind me asking but how did it go?
Nicki

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Member
juls1974
Posts: 59
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Hi there,

How are you doing now?

I too am triple negative and am still confused with it all. I was diagnosed oct 2010 and had full lymph clearance followed by chemotherapy and radio and then mastectomy due to margins nit being clear. Now awaiting reconstruction.
Its such a scary road to travel and you feel very lonely at times, but staying positive will get you through it.
Wishing you all the very best.

Julie x

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Member
Lulu34
Posts: 4,306
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Following upper mantle radiation you do have a higher risk of BC in the other breast arond 40% i think, compared to others with BC.... I see HD ladies and genetic ladies in my genetic clinic as they are both at an increased risk.... Although those with mutations are at the higher risk of a contralateral BC.... Also those with mutations ave a high risk of ovarian ca which HD patients don't ave n increased risk of.

People with brca 1 apparently are more likely to get TNBC (my audit didn't show this so that's why I say apparently) than hormonal cancers but most people with TNBC do not have a gene mutation.

I think asking your surgeon to discuss it or refer you ti where ever your closest genetic clinic is to discuss it fully.... You can also ask to speak to the team tha treated you for your initial cancer.... I'll see f I can find ny papers but prob won't be ill next week.

Lxxx

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Member
Broadstairs201
Posts: 54
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Hi Lulu, Thanks for the info. I am not eligible to get tested then. There is no genetic department in this area as far as I know, when I had genetic testing for something else after the HD I had to go to Guy's. I suppose I will just have to wait til March when I see the Surgeon to discuss the risk of BC in the other breast. Saw Occ Health who will not let me go back to work yet, even on phased return, which has not gone down terribly well with some of my colleagues, but nothing I can do to overrule the decision. Trying to put it all to the back of my mind and concentrate on getting some energy back!
How are you doing?
Liz xx

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Member
Lulu34
Posts: 4,306
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Liz I hav brca 2 gene...... To get tested you either need a significant family history or be under 40 with TNBC or have both breast and ovarian ca...... If you have had upper mantle radiation then this this would be most likely the cause of the BC in your case.... Our genetic dept see both those with family history and those with a personal history of upper mantle radiation.

I'm not sure if TNBC occurs more often in women who had hodgkins disease but in an audit I did last year of the past 11 years two HD ladies had breast cancer, one was dcis and the other was invasive TNBC, think there was another case just before I went off but don't know the details of that.

Lulu x

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Member
Broadstairs201
Posts: 54
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Hi Jo,
Interesting about your friend. Who referred her for her second opinion? Can I ask how you found out you had the BRCA1 gene? Would love to hear how you get on at Guy's. Good luck!
Lizxxxx

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Member
Jo90
Posts: 209
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Hi Ladies,

I'm not on here much but just thought I'd contribute.

I was TN a year and a half ago, when I was diagnosed. Fingers crossed, I'm clear now. Had chemo, rads, found to have the BRCA1 gene so having prophylactic surgery.

There are 2 other women in my support group who are triple neg. One found at expert at Guys in London. If anyone is interested, you're able to get a referral for a 2nd opinion about your treatment. I'm going next week.

Wishing you all the best.

Jo X

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Member
Broadstairs201
Posts: 54
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Hi, Glad to know I am not the only one worried about being over sensitive when I go back to work! I will have a phased return too, find out what tomorrow when I see Occ Health. Only going back cos money running out. I couldn't face going down the benefits route either. Whilst all my colleagues know about my diagnosis, our clients don't, so will just think I have gone barmy when they see me in scarf and hat! I was looking for another job before my diagnosis, but don't think I am a very good prospect at the moment so will have to stay put for a while a think. But as you say, a new job and new thing to focus on could be a good step forward for you.
Yes I live in Broadstairs, chose my name very late one night, wish I could change it to something more witty now! I went to Bournemouth on a course for 6 weeks when I was 18 - had a wild time!!
Hang in there.
Liz xxx

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Member
shroomie36
Posts: 73
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

aww bless ya, nice to find someone feeling exactly the same :-( i went back to work straight after rads as money was just about to go to half and just couldn't accept asking for benefits so went back on a phased. The last 2 days have been tough at work. Have only worked half days but seem to be very sensitive and have cried a couple of times. Although was nice to see colleagues, has been hard to see clients that didn't know why i was off and look a little shocked to see me with short hair and kind of put 2 and 2 together.
I am going to be looking for a new job soon as very bored in my job too, i think it may help me to have a focus.
Hope we both feel better soon.

Ooh are you from Broadstairs? I spent the first 15 years of my life in Margate :-) i am now in Bournemouth.
Love to you

Penny xx

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Member
Broadstairs201
Posts: 54
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Hi Penny,

Your post could have been me so I totally know where you are coming from. I too have TNBC Stage 3, diagnosed May 2011, had Mx and 6 x Tax. Cannot have rads as had them before for previous cancer, My chemo finished on 12th Dec and though I was delighted not to have to have any more of that particular poison, my mood has been incredibly low. I said to my sister that to me, the fight is just beginning, you almost feel protected when you are having treatment, then you are suddenly on your own. I am going back to work on Monday and am dreading it, I am still so emotional and will probably cry if anyone says anything insensitive! My poor husband must wonder where his wife has gone, I don't feel like me anymore. I saw the Oncologist last week too, and it was all so quick, I felt quite stunned after. Came out with a whole lot of pills I didn't really want, as I mentioned my fingers were numb and having hot flushes. These symptoms are bearable just thought I should mention them and now have millions of pills to take!
I am sure it will get easier, as Lulu says, I suppose it will take time to settle into this next phase of our lives, after 6 months or more of being a patient.
Good Luck!
Liz xx

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Member
shroomie36
Posts: 73
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Thankyou lulu, great read :smileysurprised:) has made me feel a little better x

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Moderator
Jo_BCC
Posts: 6,535
Registered: ‎01-05-2012

Re: What does Triple Negative Mean...?

Hi Penny,

I have also put for you a couple of links to BCC publications regarding life after BC treatment.

http://www2.breastcancercare.org.uk/publications/moving-forward/moving-forward-support-people-living...

Moving forward resource pack:
http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/moving-forward-resource-pa...

I hope these also help. Take care,
Jo, Facilitator

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Member
Lulu34
Posts: 4,306
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

Penny your reaction is common after treatment comes to an end regardless of the type of cancer you had but there is a useful article called after the treatment finishes.....
http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604...

It does get easier
lulu xxxx

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Member
shroomie36
Posts: 73
Registered: ‎19-01-2038

Re: What does Triple Negative Mean...?

hi all, i was diagnosed with triple negative stage 3 breast cancer 22nd April 2011, had biopsy's, lump removed, 6 x fec, and 20 rads. All finished 7th Dec. Saw oncologist last week that just had quick feel asked how i felt and said they'd see me for a yearly mammogram. Have been fairly strong through the whole treatment but now its all finished i'm feeling abit down. I'm fairly angry with myself for not being over the moon but the way i'm seeing it is that the fight is only just starting. I'm back at work and trying to be normal, but looking different and clients seeing me before but didn't know why i was off is quite hard some days.
I'm hoping i've just got abit of the January blues and in time things will get better.
Totally understand where everyone is coming from though, tooo many negatives on having this type of cancer.
Good luck on all your SE's
Penny x

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