I also got a bit hung up at the triple neg issue, hearing about the higher chances of re-occurrence in the shorter term, however I got things into perspective, whats the point of worrying, you just take the treatment offered and get on with life. I could walk out of the house tomorrow and get knocked down by a bus. I finished 7 months of treatment (surgery, chemo and rads) just last week and am back to work, tired yes but it takes my mind off it all after months of thinking of little else. I feel almost normal again and doing my best to get physically and mentally fit again. What will be, will be as they say. Off to pour a glass of wine!
Good luck all.
I too am tnbc. At my first visit to the oncologist I was told some stats on the benefits of chemo, which blew my mind. It seemed to be the toss of a coin as to whether there would be any benefit at all to 6 months of treatment and possible long term side effects. Part of the problem was that over Christmas the USA website, adjuvant online, was being updated and my Oncologist could not get access to any statistics relevant to my specific case (my age, background health, form and grade of cancer, etc.)
The whole thing blew my mind and I was really upset. I'd been very positive throughout both lots of surgery but completely lost it for a while. I turned things around by talking to recovered patients, joining forums like this, emailing my bresat care nurse and oncologist with the questions I wanted answered at my next consultation. Writing your questions down is really useful - not only is it a reminder when you are in front of the doctor, just writing them down helped me to focus again.
By the time I went back to see the Oncologist again I was in a better frame of mind and she had some meaningful data to discuss with me. Knowing that what I was being told was specific to my case made it much easier to take her advice on board.
I started 6 months of chemo yesterday and so far so good.
Lanterna you make some excellent points there re the American ststs.I hadnt fully thought them through.
Personally I don't look at stats. You don't know what side of the stats you are going to be. That's the way to driving myself mad with worry. Everyone's different I know but as they can't offer certainty I don't see the point.
I do remember you posting before and understand that you couldn't have chemo. Have you been offered radiotherapy and is that a possibility? My understanding is that it can decrease the percentage risk of recurrance significantly (that's what I was told by radiotherapist).
I think another problem is that many of the stats come from the States, where triple negative BC is more commonly found (but not exclusive to) in women from Afro-American, Hispanic and Native American origin. As these groups also coincide with the poorest groups in American society, they are also the least likely to have health insurance and may well present later or wait longer for treatment.
Which means a poorer prognosis. The NHS doesn't always get everything right all of the time, but three cheers for its existence.
Jaime the problem with triple neg is how long has this category existed for? Certainly not before the discovery of the HER2 oncogene, because then it could only have been double neg!! i.e. only ER & PR negative. So many stats around for triple neg can only be as recent as the discovery of her2/herceptin. When I was diagnosed back in 1990 triple neg was not a term in use. Herceptin I think was known of but still in its very early stages of testing. Many of us will remember the fight to get a level playing field across the country in the provision of Herceptin for Primary breast cancers. For some of us you couldn't get the drug until you were almost written off! As with so much in the world of cancer stats, they are out of date almost as soon as they are published!
I am just so thankful that my very aggressive her2 status was discovered in 2003 before the bc had killed me because that is the way it was heading.
Sorry if this seems a bit of a ramble. I hope it is clear what I am trying to say.
Grade 3 cancer with 13 lymph nodes involved.. Surgery May 2008.. breast removed with immediate reconstruction ..cos mammogram said DCIS not invasive cancer..pathology said lymph nodes incolved..chemo, radiotheraphy and herceptin which just finished on 24th Deccember 2009..my first mammogram clear in Jan 2010..how soon do I wait for the cancer coming back..am fat from the chemo etc.
Who has the right info to feed into this calculor to determine life expectation...
My onc said exactly the same - and let's face it, tamoxifen sounds like a right pain in the jacksy. menopausal symptoms for the next 5 years? no thanks ... 🐵
Hi - I am also triple negative. Until I joined this site I hadn't really thought about the type of cancer I had - just the fact that I had breast cancer. But on reading comments on this site I terrified myself into believing that triple negative meant a death sentence. When I mentioned this to my onc she was no more concerned than if I had a hormone positive cancer and basically told me to stop reading into things and just get on with living my life. I have now decided that I have done everything in my power to prevent a recurrence (double mx with immediate reconstruction and chemo) that it is now out of my hands and I just take each day as it comes. Like you I had no node involvement and no vascular invasion.
Take care and don't dwell on being triple negative - all it means is that you don't have to take tamoxifen or another hormone drug.
Hi - you can try putting various things into this online calculator...
i find the pictogram easiest to read...
the different types of cancer all have their own problems - triple neg is more likely to recur in the first couple of years - but if you reach 8 years is very unlikely to come back...
her positive used to be very bad - but herceptin is proving very good - although it doesn't work for everyone...
er + - tamoxifen is good but can have awful side effects that can last the full 5 years you are on it... plus er + has the worst record for coming back years down the line...
it really is a case of swings and roundabouts...
I wonder if you now the answer to my next question, you see I have learnt more in here than with my nurse or doctor most probably because here I dare to ask, when I am with them I seem to go blank.
I am triple negative, and everybody says that the cancer is more likely to come back if you are triple negative than not, I would like to know is there any statistics about this, I put my example, I am triple negative, grade 3, primary breast cancer, mastectomy, given the all clear, no nodes involvement, no chemotherapy or anything else. Lets put the same conditions in somebody but not triple negative, what would the % difference, or difference in years of cancer not coming back for the next 5 years. Has anybody done any studies about this?