I was diagnosed with TN last Dec, with 2cm invasive plus 1 cm non-invasive with 4/19 nodes affected. Stage 2 and grade 2. I had MX, FECx3 and Tx3 and rad. My onc told me that my recurrene rate is 30% to 40% after all treatments. Has anybody got such a high recurrence rate. Also I wish to know that this high recurrence means that my survival rate in the next 5 years would be 60% to 70%. I would appreciate any information on this. I am very scared.
I am Triple Negative too and had to dig out the old papers before I could answer you. And even now I don’t think it will help that much as I was 65 at diagnosis and therefore the figures are affected by the fact that women my age die of other things with increasing frequency in the 60s and 70s.
I had 13mms invasive Grade 3 surrounded by another 10-15 mms of DCIS. Nodes clear, some lymphovascular invasion. Treatment Mx, axillary clearance and FEC x 6. Given a recurrence rate of 39% in 10 years.
It is scary, I am still learning to live with the uncertainty while fending off the “so you have got the all clear” stuff.
There is a difference between recurrence and survival figures. As it is so complex and individual, I would suggest phoning the helpline here some time this week for help in interpreting this, and in the meantime hope that bumping your question up the list may mean someone else TN can answer you.
Have a hug if you would like one!
Please call our helpline where you can talk things through as Lavendar has suggested, the number to call is 0808 800 6000 and the lines open at 9, weekdays 9-5 and Sat 9-2.
Hi Tommy, I’m triple negative and squamous metaplastic. Like you I’ve read the research papers and the statistics, I emailed my oncologist as a lady in America who has the same diagnosis as me was told that she has a 70% chance of re-occurrence. I’m still awaiting a reply. It’s very difficult isn’t it to get on with your life not knowing what the future holds x
i dont even fit a category of recurrence as i had a grade 1 hormone positive tumour in 2006 followed by a grade 3 TNBC 2 years ago and then a recurrence of the TNBC in interpectoral nodes and there is no consensus of what the risk of recurrence is from them… but as a gene carrier i have a risk if a new cancer, lifetime risk from the hormone pos ca and a risk from the primary and recurrence sites for the TNBC so all in all i think caner is now part of my life and i just have to live with it and hopefully will get periods where i dont have to have treatment.
for the TNCB if you survive to 5 years then you are consider cured, which is not the case for hormone positive cancers the risk is there for ever… the risk of recurrence is highest within the first 3 years for TNCB and drops down dramatically after that and is pretty much non existent by 5 years.
Many thanks to all replying to my query. I contacted Helpline. Although I couldn’t get the answer to my query, the lady explained that the statistics are very difficult to apply to individuals, as each is so different. The stats are derived by inputting all factors including age. So long as we are around stage 2 (at least not stage 4), the stats may not be of little use. That is quite encouraging. I can have a hope, though I will be vigilant.
I was diagnosed TN 8yrs ago on the 17th Nov. My tumour was 2.4cm with lymph and vascular invasion. The latter was particularly nasty and I wasn’t expected to get through chemo (4xTax,4xFec) without it returning. After treatment I was told I had a 35% chance of 5yr survival. I remember thinking 35% is still an awful lot of women and I’ve got as much chance as any one of them of doing it. I did change my diet, I’ve always been vegetarian but I went dairy free as well, and I took up power walking. Everytime the bc was getting to me I’d get out there in all weathers and plod along as fast as I could… and if I felt I’d overdone it on getting back I’d treat myself to a can of guinness. And this Christmas to celebrate 8yrs ned I’m going to treat myself to a nice piece of stilton cheese!
My lifes been full of catastrophy and stress - even my doctors have said if stress brought it back I wouldn’t have made 2yrs. I’ve never had any luck… must have been saving it all up for this!
That’s fantastic news Jodie… They now say if you survive for 5 years after TNBC then you are considered cured so it’s fab to hear you are 8 years down the line… And I’m sure it will give lots of hope to those who are just diagnosed and worried about the future.
I am a newly diagnosed TNBC grade 3 (11 oct 2011) just finished 2nd cycle TAX+avastin. I was interested to note your comment about going dairy free. A friend of mine who also has breast cancer went dairy free 5 years ago when her twin sister was diagnosed with BC but it didn’t stop,her getting it. However, she does feel that by being dairy free she had 5 extra years of being cancer free before it took hold.
Did you find it difficult and what did your oncologist advise. I obviously want to do everything I can to prevent recurrence and would go dairy free if I had some real evidence it works? Where can I find that evidence?
My surgeon told me my cancer was non-spontaneous so by that I assumed that whatever my lifestyle or external factors I’d get cancer at some point in my life anyway?
I’d be really interested to know more.
There is no evidence going dairy free works… It’s a controversial issue and some people claim it does reduce the isk f recurrence but there isn’t any actual evidence to support this and infact of the research trials into dairy free has shown that your risk of recurrence either stays the same or reduces when do actually eat dairy.
There have been many threads on this and no doubt the dairy bashers will come along and say it is beneficial to avoid it.
In terms of TNBC it won’t make any difference anyway as the theory for avoiding it is because its thought a dairy products contain artificial hormones which would increase the incidence of hormone positive cancer (although as i Have said there is no evidence to support this theory) but that hormone neg cancer is not affected by hormones o even if it were to increase incidence it wouldn’t affect us TNers.
I went dairy free after reading Jane Plants ‘Your Life in your Hands’ while on chemo. I know it’s a controversial book(on here at least) and I had many an argument with others about my diet as in those days I was in the minority. But at least here was someone recommending a lifestyle she believed would help me survive - my own doctors just told me to go out there and enjoy my life. When they signed me off after 6yrs I had a big hug and was told I’d done all the right things and that when someone in the same situation asks now they’re recommended a very low fat diet ( dairy free being ideal) to keep their weight down and to excercise - power walking being one of the best! I didn’t find going dairy free difficult,in the early days it was my crutch and believing I was doing all I could kept me going. I knew if it did return I’d done my best.
The only thing I’ve missed is cheese as being vegitarian I did eat a lot of it - the vegan variety is awful, but Swedish Glace ice cream is delicious…my grand children prefere it!
Thanks so much for responding Jodie and lulu. I guess it’s a lot to do with trying to have some control over this wretched disease. I will do some further research. As a newbie I’m discovering lots about breast cancer and lifestyle.
Thanks again both, it’s good to get all sides and opinions.
I too am TN. I had 5cm of DCIS and 14mm of invasive, grade 3 ,no nodes involved.
I have been told that with chemo then 89% of women would still be here in 10 years, mind you the oncologist didnt mention if any of these women had had a recurrance and had been treated.
I think that the key is being diagnosed early as I believe that BC is one of the most curable if caught early.
I am beginning to think that too much info is damaging !!
I am TN too and dread the risk of recurrance. I was Stage 3, had 2 nodes infected out of 18 removed. I had FEC- T 3 of each and 23 rads plus lumpectomy. SO is it 5 years down the line i can say I am cured? its also a year since my dx. so very emotional right now cos this time last year. got dx on 21 December 2010… Shar xxx
According to the study day I was at in march on TNBC they categorically said there are no recurrences after 8 years of TNBC and so few after 5 they would consider you to be cured and that is what some consultants tell their patients… After 8 years if you are TN and disease free you Are very unlikely to get a recurrence or to die from BC.
Also having a local recurrence with a TNBC early precedes a distant recurrence… No mention of regional recurrences how ever in the research iv read so far.
Shar, it is emotional getting through the anniversary anyway without it being Christmas as well! Just take it steady.
Lulu, thank you again for your professional input, you are a darling to go on giving your time and expertise, you are very much appreciated!
I said I wouldn’t post again on here but I do lurk and I guess this is one for me to respond to.
I was dx with a 2cm Grade2 tnbc in October 2006.The 30% recurrence risk was with surgery only.I had chemo 4xfec and 4xtaxotere and 15 rads.I was then told recurrence risk down to 15% but given my age [62 at dx] overall survival stats were 80% that I’d still be alive in 10 years.
I was discharged by my oncologist in June and by my surgeon in October.Both say that there is little chance of tn recurring after 5 years and none after 8.
This is one are where we are more fortunate than +++ folk who can have recurrence 20+ years post dx.
sadly it doesnt mean that we,like anyone else,cant develop a new primary but that is down to factors beyond our control.
Thanks Val. Your bc is similar to me, but i wonder why your recurrence rate was so different from mine. I was told after the course of treatments: mx, fecx3 & tx3 and 25 rads, my recurrence rate is 30-40%, without chemo, it would have been double rate. Mine was stage 2, grade2 and 4/19 lymp affected. I am 56.
Anyway, again many thanks for giving me a hope.
By the way, as to the debate over dairy free, I also came across an article. An academic bc patient had a secondary bc, and after completely stopping dairy products, her tumors started shrinking, almost gone. I don’t know that the academic had tnbc. Having read that article, I am trying dairy free diet, though sometimes, I can’t resist cheese.