It’s been ages since I have written anything, but little insecurities are pushing me to write.
I have just been told I am triple negative. i know this bad as i cannot have Tamoxifen of Herceptin, so following my chemo I feel I will be sent into the wilderness with no back up treatments. I have heard that triple negs are twice as likely to get distant mets.
I have been told chemo is my best line of attack and have just had my 1st of 3 FEC to be followed by 3 Taxotere. Had my FEC wednesday and must say despite throwing up 3 times yesterday morning I feel fine right now. I read here people having 4 FEC & 4 taxotere so why am I having 3 of each. Again, I am feeling that I will not get enough treatment.
I am stage 2b grade 3… 2 nodes involved with a 2.7cm tumour. I had a mastectomy so therefore do not have to have radiotherapy, which I am pleased about, but I have to say I am not liking being in this triple neg minority. Apparently it is more common in us pre-menopausal folk.
Hope you can reply back with some points on this, good or bad, I am a tough cookie but when we were waiting for the HER2 results my surgeon said that HER2 pos was more aggressive anyway, and my oncologist said that triple negative was more aggressive so conflictions there. Would love to hear what you have been told on this.
I think in their own way, both diagnoses are more aggressive than other types of breast cancer. There is a whole forum about us triple negs on bcpals are you on there?
I was diagnosed in October 2003 and am triple negative too. Since my diagnosis I have been trying to do a bit to raise the profile of triple negative breast cancer. I wrote an article with Emma Pennery (nurse consultant at BCC) in the Breast Cancer Care Newsletter last Autumn and you should be able to find it on the site.
It is true that there are no specific targeted therapies for triple negative bc other than surgery, chemo and radiotherapy. Many factors affect prognosis as well as hormone status, including size of tumour, stage, number of lymph nodes etc. Statistically triple negative cancers recur more quickly than er+ and pr+ ones but by ten years after diagnosis the figures are the same, so I don’t think its true to say that triple negs are twice a likely to get distant mets. Statistically too triple negative tumours respond better to chemo than er+ and pr+ ones. Her2+ tumours are considered ‘more aggressive’ than her2- ones, but then if herecptin works (it does for some her2 tumours but not all) the aggressiveness probably evens out. You can’t really compare because statistics don’t tell us about individuals.
Cancer is unpredictable in any case and people with very good prognoses go on to get recurrences and conversely people with poorer prognoses don’t. Living with the fear of possible recurrence is part of living with cancer.
Treatment regimes vary from hospital to hospital. People get different amounts of different chemos and I have heard of others getting the same treatment as you. Ask your medical team for more info on why you are having 3 + 3 if you re concerned. (and get a change in anti sick medication…most people don’t have to be sick these days.)
I had 10 months of treatment and was then very well for 2 and a half years. I have now got a regional recurrence, but I had a lot of nodes with cancer, so I’m on another chemotherapy combination (xeloda and navelbine). I know of other women with triple negative bc doing well five plus years from diagnosis.
best wishes and hope treatment isn’t too arduous for you.
I have just finished FEC today and this completes my treatment as I was triple negative. I was feeling quite positive and looking forward to putting all this behind me and getting on with my life. However, I have just read your post about triple negative being twice as likely to get distant mets. I thought I was lucky to be triple negative and I was not aware that it was not good. Now I am feeling very low.
I hate being in the minority. I joined bcpals and read the triple neg forum.
I am a girl who likes statistics and will have a heart to heart with my oncologist in 3 weeks time. She is lovely but straight down the line as she knows I am a girl who does her homework.
There was alot of truth in what you said and at the end of the day, nobody ever really knows what side of the fence they will fall.
I suppose what I really want is a lady with a crystal ball. The last time I saw her she said I had 30-40% chance of recurrance but at that point we did not have the results back for HER2. So will it be more likely to fall into that category than the 60-70 % that dont,if no back up of Herceptin?
Only time will tell. Sometimes I wish I knew less knowledge but it is against my nature not to research everything.
Thanks again for your reply it has made me feel more reassured
I’m also triple neg diagnosed in April 2005 had lumpectomy for grade 3 tumour followed by chemo and 20 rads. 2 and a half years on I feel fine and not so worried about it as time goes on. But there never seems to be enough information about this type of bc I agree. I would like to know what the risks of recurrence are if you’ve had no node involvement? When they talk of recurrences, are these more likely when there has been lymph node involvement?
Are you as much at risk as someone who has had lymph nodes involved or does the fact that I had clear lymph nodes and clear margins make me at less risk?
At the time of diagnosis, my Onc gave me an 82% chance of surviving 10 years so I can only keep positive and I feel very fortunate not to have had any spread.
My heart goes out to Jane and I wish her all the luck in the world, as I have been following her encouraging threads since I was diagnosed.
Love
Bev x
I remember starting this thread in August just as I started chemo and now I read it again as I am about to finish (15th Nov). A little more informed than then!
I think no nodes means less risks of recurrance. Your onc gave 82% 10 yr survival. With triple neg it tends to re-occur in the first 2-3 yrs and fter 5 years your risk of recurrance is greatly reduced.
Good luck, sounds like you are over the worst bit.
I’m triple negative too… don’t really want to know the odds of recurrence… would rather keep in my own positive bubble!! I was told that it was better to have a Grade 3 tumour, with no lymph node involvement (which is me), than a Grade 1 or 2 with affected lymph nodes… that’s good enough for me… So Bev, I think that you’re in the same situation as me, but much further down the line… looking forward to the light at the end of the tunnel!
Thanks for the response, its really encouraging. After 2 years you tend not to dwell on things so much anymore…but occasionally you still get the odd blip!
At the time of diagnosis, my only thoughts were that if I had an 80 % chance of surviving, then I had a 20% chance of not!! Now I concentrate on being in the 80%.
I worried a lot about recurrences, but have since found out that my friend’s sister who was diagnosed 7 years ago and still very much around, was triple negative! And another triple neg friend is still here 5 years on.
I used to say “why me” a lot in the early days, now I say “why not me?” 1 in 9 women will get bc in their lifetime and 1 in 3 some form of cancer. But treatments are progressing and improving all the time.
Nowadays I think more on the lines of “glass half full” not “glass half empty” and I think thats the only way to be.
Keep positive. The time will fly by even if you don’t think so now. I can’t believe where 2 years have gone…although I must say, it has taken me a good 18 months after radiotherapy to feel 100% fit. So don’t be too impatient and listen to your body.
I wrongly imagined I’d be “back to normal” after radiotherapy!
But good luck to you both for the future. Keep positive. My diagnosis seems a very long time ago now, I sometimes find it hard to believe I had cancer at all!
Bev
That is so nice to read. without wishing my life away, i longed for the day when I can write on here about it being a distant memory. It really is comforting, especially when positive stories are mentioned about other people too.
To get on to the bc pals website, go to www.bcpals.org.uk You can register… can’t remember how I did that, but I don’t remember it was a problem… I joined a few months ago. Another good website with good chat forums and a place to pick up good tips.