hope this is ok to ask… but being recently diagnosed as triple negative new primary… following previous positive BC at age 37. i just wondered what everybody elses stories and treatment has been.
1)age at Dx - 40
2)size & type - 19mm IDC 25mm including high grade dcis
3)grade - 3
4)nodes - 0/1 but lymphatic invasion
5)BRCA - neg for 1 and 2 in 2006, but getting re-referred.
6)surgery - WLE
7)chemo - eCMF
8)rads - number to be confirmed
9)cancer type - basal cell like
10)cytokeratins? - positive for ck 5 and 6
aged 35 at dx
15mm IDC
grade 3
nodes 0/4
BRCA - still waiting to hear if they will test me
surgery WLE
chemo 4 epi 4 xeloda part of TACT 2 trial
rads 15
cancer type ?
cytokeratins - no idea ???
Hi Lulu,
My low down is as follows:=
Age 51 at diagnosis
IDC, stage 3, grade 3
Mastectomy, with 3xFEc and 3xTaxotere
25 rads
14/20 lymph nodes affected, now have lymphodema to boot!!
I feel I was a bit old for triple neg, but there you go, it,s just statistics!!
Diagnosis was 2 years ago, now on the brink of finding out if it has spread to lungs. And I was so determined to knock the 2 year statistic too! Ah well,
All the best,
Jax
Here’s mine:
1]dx aged 62 following routine mammo[jax you arent old!]
2]IDC 2cm grade2
3]no nodes involved and no vascular invasion
4]WLE
5]Chemo 4x FEC 4x Taxotere
6]15 rads
dx Oct 2006 now on 6 monthly onc appts and annual mammo/surgeon appts
so far so good
Valxx
…and mine.
Dx aged 45 in Dec '03. 2.4cm,grade3 with one pos node and and so much vascular invasion that it was expected to return before I finished chemo (luckily I didn’t find this out until I was 2yrs down the line)Had WLE followed a month later by 4xfec,4xtax and 25 rads.Was on taxol trial so should have been seen twice yearly for 5yrs,however stopped going to appointments after 3yrs as felt a quick breast examination and a 5min chat was not worth the stress of getting myself to the hospital! I examine my breasts myself and as for the chat I couldn’t get out of the hospital quick enough! I wouldn’t miss my yearly mammogramme/examination appointments though, and will still be having them until I’m 8yrs down the line.
I’m doing well and keeping everything crossed.
Josie x
Triple negative means that you are her2 negative and er and pr negative… if you have been told you will be having herceptin or tamoxifen (or one of the other hormone treatments for er + ) then you are not triple negative…
thanks theresa,all this jargon i cant take it all in !! that counts me out then,think they said im having herceptin,not sure if thats a good or a bad thing but roll with the blows hey !!
xx
Diagnosed October 2003. age 54, after misdiagnosis 7 months earlier.
Triple negative er- pr- her2- , but no one called it triple negative then (term used after identification of her2 and development of herceptin)
6 cycles neo adjuvant AC
mastectomy and axilla clearance March 2004. 23/25 lymph nodes with cancer
4 cycles taxotere
25 days radiotherapy
NED August 2004-April 2007
April 2007 diagnosed with regional recurrence in supraclavicular nodes and chest wall
6 cycles xeloda and vinorilbine
3 cycles xeolda maintanance
Jan 2008 6 cycles gemcitibine and carboplatin
September 2008 8 weekly taxol
Jan 2009 3 cycles vinorilbine
Don’t know about cytokevatins
Srongly er- pr- her2- but probably not basal
No spread as yet to lungs or liver but bottom lobe of lung collapsed due to pressure of nodal disease
Voice strength lost September 2008, operation to insert bioplastique in vocal chords.
Eye damage and have horner’s syndrome
Tumours near jugular vein…on warfarin but risk of stroke
March-July 2009 Increasing nerve pain from pressure of tumours. Bad lymphoedema and signiciant impact on quality of life as can’t move or walk without pain
Waiting for insurance approval of caelyx (liposomal doxuribicin) with 20% chance of some tumoour shrinkage to relieve pain
Disease terminal and incurable. Life expectancy probably less than 1 year…but there’s always hope. And I’m now 60 and many women who have gone before me had less time than the privilege of 6 years this far.
cytokeratins are basically something that seems to be common in triple neg cancers and i think they plan to develop targetted treatment for them in the future… but think thats gonna be a long way off.
i just asked if i had been tested and they said yes and was positive for both 5 and 6 which are the ones most likely in TNBC
Diagnosed Dec 2007 IDC, 2.6cm, aged 45.
Had WLE and SNB, no infected nodes found.
Had 4 x Taxotere with Cyclophosphamide
25 rads
Finished treatment June 2008.
I have an annual mammogram in Dec and meet my onc in January. he does blood test and a physical exam. No scans etc.
Also have mid year follow up with surgeon and radiologist.
Hope you are doing OK.
My story:
DX June 07, aged 44, IDC 5cm, grade 3, node involvement, triple neg.
No idea about cytokeratins, never been mentioned.
Had 4 cycles EC followed by 4 cycles Taxotere as part of Neo-Tango trial.
Feb 08 - Really good response to chemo meant I could have skin-sparing mastectomy, and had immediate implant, 2/7 nodes affected.
25 rads, finishing May 08.
Started on React trial Apr 08, taking tablets daily for next 2 years, don’t know if I am having the real deal, (Celecoxib) or the placebo.
Having 6 monthly check-ups with onc, more to monitor the React trial I feel. Appointment with surgeon/bcc team later in Aug for review and mammo on my ‘good’ side.