hello everyone
i just wanted to share a story with you, i met a lady the other day you was 8 years from diagnosis NED, and she was triple neg, with heavy lymph imvolvment, grade 3. meeting this lady certainly cheered me up, just though i would share it.
love jo
It can and does happen.In '03 when I was dx even the BCC phone help line couldn’t put me in touch with someone Triple neg with node involvement who was a few years down the line and NED.I was eventually told by my oncologist to go on this site! There are a few of us here,but 8yrs - wow,that is great to hear!
Yes it is good news.
Though I’m not among the ‘lucky’ trip negs as I have a regional recurrence I think its so important that myths about the disaese don’t develop. Of course there are long term survivors of trip negative disease…remember that testing or her2 is less than five years old in many areas so many trip neg survivors don’t necessarily know thats what their disease might be called now.
Long term survivors with a lot of node involvment (more than 10 nodes) whatever the pathology of their disease are there but are sadly relatively few in number.
Jane
I was triple-neg for 16yrs with no ned, now though i have a recurrance on same breast that is also triple-neg, grade 3 with lymph -node involvement so it does happen, i only hope i get another 16yrs.
Here,s hoping.
lots of love
Reneexxx.
Renee,
I was interested to see you saying that you were dx triple neg for 16 years! My original dx was 18 years ago in 1990 - and a dx of just ER/PR neg. It wasnt until a tumour was removed in 1999 and tested that I was found to be HER2 positive.
I have done a little bit of googling to discover when triple neg was first use in diagnostics. So far all I have come up with is the fact that in the 1980s a molecular biologist discovered that certain genes found in rat tumours acted as triggers. It wasnt until several years later scientists discoverd a human counterpart to these genes. This study found that the cancer cells in these women had multipole copies of the HER2 gene.
Surely if that is the case there are not going to be too many stories out there of women with triple neg breast cancer having survived that many years if it hasnt been known about for that long.
I would be interested to hear from others who may be better informed than I am.
Dawnhc
About trip negatives and testing:
The growth factor her2 was, as Dawn says, identified in the late 1980s and the drug herceptin was then developed in the 1990s. It was approved in the USA for use in metastatic breast cancer in 1998 and in the UK in 2002. I think some cancer centres like the Marsden started testing or her2 in the late 1990s. I know I was tested in October 2003 but its was still not standard practice to do so then. The NICE guidleines on her2 testing for everyone at primary diagnosis only started in 2005 around the time when herceptin was used for primary bc.
The term triple negative was barely used in the UK when I was first diagnosed although it was more common in the USA and is used widely in the UK now. The vast majority of people diagnosed with primary breast cancer in the UK prior to 2000 or slightly later couldn’t possibly know whether they were ‘triple negative’ or not, because they wouldn’t have been her2 tested.
I think its important to realise that ‘triple negative’ is a shorthand description for having a breast cancer which does not have receptors for oestrogen, progesterone or her2. It is not a single sub type of disease but probably several. One of the largest molecular sub types of triple negative disease is thought to be ‘basal type’ tumpirs…but not all. Most BRCA1 cancers and many BRCA2 cancers are triple negative but not all triple negative tumours are BRCA1 and BRCA2. ‘Triple negative’ breats cancers do have other receptors which make them grow but not all have been discovered yet. The key to finding treatments will be to find these receptors and then develop targetted treatments (like herceptin) for them. For example some triple neg breats cancer may have EGFR (epidermal growth factor receptor.) The BrCA1 and BRCA2 cancers may repsond to a class of drugs called PARP inhibitors.
Just as ‘breast canecr’ is not one disease but many, so ‘triple negative breast cancer’ is not one disease but several. although at the present stage of historical and scientific understanding I think it can be helpful for publicity purposes and to support women with these types of breast cancer, to bracket them all together under the ‘triple negative’ umbrella.
Jane
I know that her negs were not diagnosed till later but all i can say is when i was given the path report by breast surgeon she said it was exactly the same type tumour as last time so i assumed it meant i was triple neg last time round.
She said the tumour was stage 3 grade 3 and triple neg.
Sorry if i confused anyone
Reneexx.
To back up what JaneRA has just said - I have medullary - which is triple negative - but not all triple negatives are medullary I believe. Someone else on here is medullary too - but I’ve forgotten her name as I am all over the place today and now worried about my arm!
love FB xx