Hi All,
All the statistics and discussions I have read indicate that the first two years after treatment are a crucial period if your cancer is likely to recur, although I understand it may be longer if you are triple negative (as I am).
When does this time period start from? Is it from when the chemo ends or from when the cancer was removed during surgery? or from when you finish your rads??? I am very confused
Thanking you in advance
Katyx
Katy I hope that you don’t mind if I add another query to yours… I have also had ten years mentioned in regard to chemo treatment and I don’t understand this either.
I understood that it was from the date of diagnosis but I may be wrong. What do other people think?
Anthi
I’m not sure either but I did read about the recurrence risk in these early years . I didnt get it from the medical team did you ?
I do wonder about this though as if it is from diagnosis the its a bit vague isnt it as many of us have been living wit cancer unaware until it became physical.
Cally
All very vague, heard that 2 years is more cricital for triple neg and others tends to be 10 years that I know you have check up for, wonder if anything to do with 5 years as that’s what Im going to be on the pills for?!?!?
The 10 years and 20 years numbers are based on statistics and data collection. Eg they have a database of patients, their diagnosis and whether they’re still alive after 5, 10 and 20 years. They say that you have x% chance of being alive after 10 years. So in the case of 10 years the numbers are based on what has happened to people treated 10 years ago and where they are at now. It’s a little more complex than that but that’s the essence of it.
There’s a couple of important things to bear in mind here.
1: Treatments are always changing, generally for the better. So in some way numbers now are likely to be lower than then numbers that will be based on those of us being treated now 10 years from now.
- Treatment has changed a lot since 20 years ago so the 10 year numbers are more practical use. But this does not bear much on the longer term view for a patient but it is my understanding that the first 10 years are the one to be most watchful statistically, this is borne out by the fact that the NHS likes to monitor closely for the first 10 years.
Sorry you can tell who’s been working stats today can’t you 
There was a great article I read about the stats for us triple neg ladies. I can’t remember where it was but it essentially indicated that you were highly unlikely to get a recurrence after 3 years If I recall correctly. I think JaneRA may have pointed it out. I’ll go find it if you like, let me know. I can usually google anything
With trip negs there was some research which said you are unlikely to get a recurrence ater EIGHT years (not three).
Jane
I was under the assumption the crucial post diagnosis 2 year period was for ladies who were Her2 positive before Herceptin was available.Can anyone shed light on this?
I asked my surgeon this, and he said the time starts from surgery.
I presume that if you have chemo first, it starts from the first chemo?
My surgeon also said the stats start after surgery you are usually told prognosis post surgery and are given stats with and without further treatment.Re triple neg I believe chance of recurrence greater than others for first 3 years then levels out until 8 years after which prog for 3N better than others,hey ho.
My onc told me from surgery is when they start the clock, i was Her2 positive and i am now 5 years out hopefully thats a good sign!!
Does anyone know what ‘slightly hormone receptive’ means, does that mean I am closer to triple neg than anything else as was not her2 either. I was put on tam but was having a hard time of it so stopped taking it (mainly due to severe depression, nothing else, long story). Anyway, my onc said it was up to me to take it or not as I was only slightly hormone receptive. I wasn’t given any kind of prognosis or percentages, now I am confused!
Has anyone else been told they are only slightly hormone receptive, if so any info would be fantastic.
Neenie xx
I wasnt and still havent been given any stats either with or without further treatment. All I was told after lst op was it was in 3 out of 4 lymph nodes so I had to have chemo and i was HER2. Thats all i have ever been told. So far. I am about to start chemo on monday. 4 FEC & 4 TAX. I did ask how much TAX improved chances and was told 25%. Even after 2nd op to remove further lymph nodes i still wasnt given any stats. Only it was in total of 6 out of 21. If cancer was attached to chest wall would they have told me? How do they decide which chemo to give? Everyone else at the support group I go to just seems to get FEC which leads me to believe I am worse that everyone else. Everything is so worrying and I never seem to be given any ray of hope. When i was given final lymph node results and told 6 i said well thats not too bad to which registrar said well its not good. I do not know what stage i am either. All I know is Grade 2, lobular, multifocal two tumours 5cm & 2cm, HER2. Is Grade 2 and HER2 worse that just a Grade 3 with a negative HeR2. I am also 8/10 for progesterone so have been told I was get partial benefit from tamoxifen. Would be grateful if anyone can answer any of my queries.
Starfish x
Cheers Horace, that was it, highest chance of recurrence in first 3 years and triple neg people have a better prognosis than most after 8.
Jane do you recall where that article was as I’m sure people would like to read it, and I should point out that writing in caps is taken as shouting at someone online but I doubt you intended that.
Angie
Hi All,
Glad to know that most people were just as confused on this as I was. I had chemo then surgery then rads-so I am officially starting my clock from July 07 (when I had my mastectomy) and will start the celebrations in July 2015-anyone wanna come to my party? Ha!
Katyx
Starfish, I had 1 outof 17 nodes positive and had 2 tiny invasive ductal tumours, 1 of which was Oestrogen and Progesterone positive and the other HER2 positive.
I had mastectomy, 4FEC and 4Tax, radio and am now on Arimidex and Herceptin.
I think that Herceptin works best if it is combined with one of the Taxols, and so that is why, perhaps, you are having Tax as well as FEC.
xxx
I’ve found the article I was referring to but as we’re not supposed to post links I can only suggest that you google for:
Breast Cancer Watch Digest
It’s a little heavy but does quote studies.
Hi Nikki
Sorry cannot work out these whisper back things. How do you do it? Reply that is?
Starfish xx
Hi Cherub,
I was told that the 2 year period starts from dx and like you was under the impression that this was particularly crucial for Her-2+. However, I have read somewhere either on this forum or another internet site that because of Herceptin the crucial time for Her-2+ is now 3 years from dx. No idea how true this is. ChristineMH and dawnhc are to Her-2+ info what janeRA is to triple neg on info for these types of bc so maybe Christine or Dawn would know the answer to this particular query. Love xxx
I was shouting EIGHT…just to be clear that it wasn’t confused with three. 3 and 8 can be mistaken. Sorry!
Jane