When I was first dx I was led to believe that if you made it to the 2 year mark then the chances of ‘it’ coming back were greatly reduced. What continues to surprise me is the great many folk who come on these forums who have been clear for many years and then get secondaries or recurrence. I think it was the bcx nurse who told me. The one who told me that they were aiming for a cure plus a load of other tripe… Love to all. Eileen
Hi Eileen
As I understand it, bc can come back at any time and although it seems to lie dormant for a long time with many people, the longer without a recurrence, the better, I believe.
Perhaps they didn’t explain it too clearly - I wonder if they meant 2 years NED was a good sign (though, as many of us are only too aware, by no means a conclusive one)?
I was told ‘its a fickle disease’ …
X
S
I don’t want to contradict what you’ve been told, but I know many ladies who’s cancer has returned many years later, my aunt is one, her’s came back in her bones after 12years.
I think BC is an unpredictable disease and we can only live in hope.
Hi Eileen
I remember you from last year - we were going through similar treatment at the same time.
I ,too, was under the impression that if you got to the 2 year mark with NED then things began to look up, although not sure where I got that information.
At the end of my treatment last year, my Onc. told me I was cured.
Then this year I had a recurrence which although in the chest nodes and sternum and technically a recurrence, is being treated as a secondary cancer and will apparently behave in the same way as one.
So, I don’t know…sorry, no help. Hope you are well
Ena
Good to hear from you Ena I do remember you but not seen any posts off you for ages. I think it is so cruel to talk about curing. My bc nurse kept repeating it. When I got wiser, thanks to these forums, I could have scragged her. What is it about me that made her think she could say that ha ha!! I probably look like a simple soul !!. I finished herceptin last July, I am so sorry you have had a recurrence Ena. Are you not angry that the Onc. said you were cured. Ned and cured to me are completely different. Please keep in touch and let me know how you are going on. Love Eileen
I think all kinds of breast cancer are more leikly to recur in the first couple of years if they are going to recur, but triple negative ones are more likely than er+ and pr+ ones to do so. Having said that breast cancer can recur at any time though if you are triple negative and get to 8 years, chances of recurrence very small (not so with er+ and pr+)
My own regional (not curable like you Ena) recurrence as triple negative was 3 and a half years after diagnois, much longer than expected as I had a very poor prognosis.
Ena…so sorry your consultant talked about ‘cure’. Cure and ‘all clear’ are just never the case with breast cancer.
Jane
My Sister’s Mother-in-law had a regional recurrence last year…nearly 30…(yes 30) years since her original diagnosis. She was first diagnosed in her 30’s and is now in her 60’s.
Hi All
I am 2 and a half years since diagnosis and I am doing okay, I do know what you mean though, I count every month as a blessing. My aunt had BC the year before me (2005) and she had a recurrance on her spine in July this year. IAn old great aunt of mine had her first diagnosis 40 year ago, her second 30 year ago and the third 5 year ago. think we are all different, and I pray every day that it doesn’t return, I take my Tamoxifen and hope to hell that it doesn’t return…fingers crossed for all of us.
Take care all of you
Claire x
Well I have got to 2 years NED with triple neg but just see it as a hurdle cleared certainly no one ever mentioned the possibility of cure to me although my cousin was told ‘we are going for a cure’ 7 years ago and she firmly believes it.When she had her 5 year checkup the consultant offered her a glass of bubbly!!
Hi Eileen,
Most recurrences happen within the first two years, but what happens later on depends on the type. I was told that the first three years after treatment would be crucial for me, but I had a very aggressive one with loads of nodal involvement. Also, it was her2 positive and her2 positive ones tend to come back sooner rather than later if the treatment has failed. Like triple negative ones, her2-positive ones have tended hardly ever to come back more than eight years after treatment, although no one knows how herceptin will affect things. The ones that recur very late tend to be hormonal.
I had a reccurence in the same breast after 18 years thought it was all behind me but I amoff on the same old road again,it is the unpredictability of bc that is so frightening you can quote stastistics all you like but we are all different and I have seen many people do well with poor prognosises and vice versa so its best not too be too dependant on any time factor best wishes suzan
Hi everyone
All these postings just prove that we should all embrace the good days we get and enjoy life to the full as much as we are able. I must admit i used to worry about pensions and the fact my husband and i have not got private ones and when i lost my father a couple of years ago put money to one side for my old age. Now with interest rates plummeting i am only getting half the income i was from my savings so it is just not worth saving for an old age which hopefully i will have but there are no guarantees that i will have. I am now spending my money, not frivilously but on holidays, i just don’t want to live with regret that i did not do the things i wanted to when my father had provided the means for me to do so. It is not a fortune but a little bit that lightens the load and pays for hubby and i to have a holiday.
My cousin is 10 years clear of BC she was diagnosed at grade 3 with extensive node involvement but now it is like she never had the disease and never ever even thinks of it, must be fantastic.
I am 18 months on and my sister in law 2 years on. When i was in hospital i met a lovely lady in her 70’s who was 17 years on from her first diagnosis and it had come back. My brother in law had mouth cancer 16 years ago, it came back aggressively this year he had also been told he was cured!
Yes BC is an unpredictable disease and all we can do is hope and pray that we will all be ok for as long as possible, i remember saying at diagnosis that as much as i was afraid of dying i did not want to be afraid to live.
Best wishes and love to everyone out there
Suzzanne
hi all,
I have been reading your comments ever since I was diagnosed with tripple negative bc in August 08. Can somebody please tell me what NED stands for?
Cheers
Hi Pencil, No Evidence of Disease = NED. Hope you are doing ok. x
Hi teacup
Thanx for explaining what NED means. It has been puzzling me for some time. I am OK at present but still have dark thoughts about the future. Following on from the comments made by the other ladies regarding two year myth. I must confess that from the outset of my diagnoses, terms such as ‘all clear’ and ‘cured’ have been used by my surgeon and breast care nurse, and sounding a little too flippant for my liking.
According to my medical team, my prognosis is good i.e. small tumor <1cm no node or vascular invasion. However, given that it was an invasive breast cancer and tripple negative, I feel that the term ‘cured’ and ‘all clear’ can raise a patient’s expectations. Taking into account my own research on this subject (one which I knew very little of this time last year), I am under no illusion that my cancer could re-appear regardless of the prognosis. While I understand the need to remain hopeful in any diagnosis of breast cancer, this dreadful disease claims the lives of too many women each year and in my opinion this tends to be overlooked by some members of the medical profession when processing them through the system. Sorry if I sound as though I am on my soap box.
Love and hugs to all xxx
What do people count as two years? Is it from date of diagnosis or date treatment completed? I just wondered, as there is a nine month difference, and I don’t know when to start being ‘slightly more hopeful’ from?!! I was diagnosed January 07, but finished treatment in Spetember, so I keep longing to say ya boo sucks to consultant who gave me dire prognosis! But, yes, I know, we are never free from prospect of recurrence. My mum had small stage 1 lump, told not to worry, had lumpectomy and radiotherapy, and Tamoxifen, but was dead within 3 years. I, on other hand have extensive node involvement, triple neg stage 3 and I could go on and on? Who knows in this horrid lottery of breast cancer?
Best wishes to you all,
Jax
I was told remission starts after surgery to remove the primary cancer.
That’s interesting, thanks, Cherub, so I have nearly made it to 2 years then!
so, are you all telling me that the doc who told me last week that they are ‘going for a cure’ for me, was talking bulls**t???Do I now have to give up hope of being well again, is that the score?? ;-(
Hi narnia!
I think that different doctors use very different language when talking to patients. Some would never use the phrase ‘going for a cure’ , others say things like that because they are trying not to scare patients and because they want us to remain very positive. If you read enough posts on this website you can end up feeling very depressed about the future, but I always try to think that there are thousands of women who are NOT posting on here because they are NED and don’t want to come on and be reminded of what they have gone through. My sister in law being just one of them!