I was diagnosed Dec '07 - IDC, grade 3, triple negative, tumour 3.5cm. I recently asked my Onc what he thought about my prognosis and he wouldn’t answer - do I take that to mean NOT VERY GOOD !!! I just wondered as some ladies on here have been given this information by their Onc (good and bad) and I can’t work out why mine wouldn’t tell me. I didn’t push him at the time for an answer and now you can imagine my mind is starting to go into overdrive. Can Onc’s really give a definite answer regarding prognosis or are they just looking at the stats? My Onc said that 80% of patients are cured of breast cancer and when I pointed out that as far as I was aware, there wasn’t a cure for breast cancer, he said that these women are cured, but that at the moment the medical profession cannot test whether a person has been cured or not.
I don’t know, cos I’m really new to all this (2 wks since dx), but can your breast care nurse tell you?
Kinden x
Hi Doyle and Kinden,
Even if they want to answer your question, they can’t really, as the statistics are talking about groups of people, and they don’t know where you will fall in that group. Also, a lot depends on how your body responds to any treatment, and we are all different in our responses. You are both pretty recently diagnosed, and they won’t have had a chance to see how you are responding to treatment yet, well, maybe Doyle, just.
They do talk in terms of curing bc now, as the treatments have become so much more effective in recent years. If they get rid of the primary site, and there is no spread, then they will consider you cured. For thousands of women that is the end of it, and they live a normal life. As soon as there is any spread to any other part of the body (secondaries or metastases/mets) they deem it ‘incurable’ but it is still very treatable. Many women on here have secondaries and are still going strong many years later.
I hope this helps.
All the best to you both
Jacquie
Doylej
My breast care nurse says there is no cure as such but prognosis is based on being well after 10 years. Even then it can rear its ugly head! Being triple neg means you are likely to respond to chemo very well. As for prognosis i dont think they can really tell, but I looked at the nottingham prognosis score which you can work out your own score(google it). Just to warn you though that it is not light reading! I’m 6 months ahead of you and choose to not look at stats anymore. Your onc is wrong, treatment is now really good but to say 'cure’is very unfounded
I wish you the very best too!
Love Julie XXX
Jacksy - I cannot agree with you. I had my first primary in 1990, the second in 2007 and possibly a third today - awaiting results of core biopsy. Cured is not a word to be bandied about - remission is much better. It is a life sentence and we all have to deal with it in our own way and for me living a day at a time works, sometimes.
Hi Doyle
I was diagnosed oct 07, similar to you, gd 3 trip neg but 2.1 cm although this was a big proportion of my v. small breast! My lymph nodes were clear though, how about you? I was advised to have chemo even though the tumour was totally cleared. Like you I wasn’t offered the stats but found out about them and asked my breast care nurse how I could find them out. The onc, (fearing I was going to refuse chemo I think) did them straight away, and it was a determining factor in my going ahead with the chemo. I had 3 fec and 3 tax and am now halfway through 18 rads, and feeling pretty good and hopeful if a bit tired. I am also going on a trial testing whether celecoxib can help us trip negs who can’t take any other preventative drugs - you can find this on another thread if you are interested.
Sharon
Hi Doyle
I’m afraid I am very much a statistics person - and asked for my stats straight away from Onc.I was also a statistician in a previous life lol and am very aware that they are talking about a group of people, not just me - and that where I fall within the stats cannot be determined by anyone.
I am appalled that you say your Onc did not answer your question with regard to your prognosis. You are entitled to this information. The website that most oncs use is available to patients as well (though you do have to say you are a medical person to get logged in and see the prognosis information - and you do need all the info from your path report to make sense of it.
I wanted my stats to determine that the treatment regime they were suggesting to me was appropriate (as much as I with no medical knowledge could decide that lol)
but seeing in black and white that my 10 year mortality prognosis with no further treatment after mastectomy was 30%, and that combined chemo & radio pushed this to 69% and herceptin pushed it to 89% was certainly a deciding factor in going ahead with everything.
Again - whether I will fall in the 89% or the ‘other’ 11% - no one can tell me that one, but I have to be hopeful or what’s the point?
I am reluctant to post the link to the website on here - as it isn’t for everyone and I don’t want to encourage anyone who doesn’t want to look but feels tempted lol. I would ask your onc again and say that you wish to see then and understand that they are not definitive scripts of your life expectancy. Sometimes they are just afraid (rightly in some cases) that people can’t cope with having the information.
If you want the website I can private message it to you.
I would also agree - as does my onc - cured is not a term they use. NED (no evidence of disease) is preferably in my health board. When I asked my onc if all my treatment so far had worked - her answer was - ‘I’ll tell you in 20 years when you come back and tell me you’re still here - other than that I can’t say’ -personally I like that sort of bluntness - and given that the chemo and radio and herceptin is all ‘preventative’ - supposedly treating something (microscopic escaped cells) that they couldn’t see in the first place - it was the only answer I would expect!
I hope you have more luck with your onc next time.
Magz x
I was diagnosed with BC Grade 3 and spread to 1 lymph node - met the oncologist yesterday who said he puts me in the poor prognosis category which is next to bottom - i was gutted as cos I didnt need herceptin or something else thought it would be higher - however he did say with all the treatment 80% chance of survival based on ten years - left feeling really down instead of looking on the positives which I know I should just with chemo starting on wednesday Im really scared.
I have stopped looking at figures and the internet as I just scared myself too much - stats are what they are, and I keep telling myself that there’s no saying where I am in the stats so just need to keep going and get through it.
xx
Thanks ladies for all your replies - I guess the upshot is that the medical profession really don’t have all the answers when it comes to determining prognosis. My tumour started out at 3.5cm and shrunk to 2cm after 4x AC. Whilst having Tax there doesn’t seem to be any response at all and my Onc said that the size has remained the same. I am so worried that by having no response on Tax this will affect overall prognosis and as I am triple negative - chemo is the main part of my treatment - no follow on drugs. I have an MRI scan booked for tomorrow to see what’s happening. At the moment, my breast is very, very painful, swollen, tender and the skin above the tumour has gone red - not sure what to think any more - whether this is good or bad. The tumour seems bigger to me, but again, not sure if my mind is playing games.
Like you I was also diagnosed in Dec 07 and had a mastectomy and removal of lympth nodes.
When I saw the onc in Jan to discuss the final results and further treatment I asked for a copy of my histology and one was sent to me. Like Magz175 I was given my stats and these were discussed with me.
The stats indicated the possibility of recurrance and the difference rads and / or tamoxifen would make.
I was then given time to go home and make decisions, a luxery which I know we don’t all have.
I decided to have rads as there was up to 10% chance of recurrance to the chest wall and this would knock it down to 2-3% but am not taking tamoxinfen which only gives decreases the chance of general recurrance by 2.6%.
Perhaps you could ask for a copy of your report or follow up the link Magz175 talks about if you are interested.
Thanks Magsi, I am having neo-adjuvant treatment (chemo first) followed by surgery and then rads, so at the moment I don’t have a path report or know how many lymph nodes etc are involved. I just feel like I am going around in circles and cannot make sense of anything. One minute the tumour seems to be shrinking and the next it seems to be growing again. Some people have said to me that it is impossible for a tumour to grow whilst having chemo, but after reading threads on this site, I know that this is not the case - tumours can still grow during this time. If it is growing, does this mean that my cancer is so, so aggressive that not even the gold standard of chemo treatments (Taxotere) can stop it. It just seems like this cancer won’t let go without a fight.
Sorry doylej that I can’t be of more help, but do hope that the lump shrinks and that it can be removed without the need for a mastectomy.
No choice for me, althought very small -11mm it was lobular and under the nipple so mastectomy.
When you do get to the stage of reults make sure that you ask them to send you a copy. This was a hint I got off a thread on this site back in Dec, and have copies of everything, always useful as I find I forget what i’m told!!.
Anyway I do wish you all the best in your treatment and your eventual results.
I’ll keep an eye out for your postings.
Hi Doylej and Magsi, I have been following your posts. I was being ‘treated’ at Addenbrookes hosp after diagnosis lobular, grade II, no lymph nodes. I wasn’t happy with them as they never did any blood tests and refused me an MRI on my other breast etc.etc. I have just had a second opinion and have seen my histopathology report. I am now completely shocked as it says cells were found in the sentinel node but there is a bit at the end saying its node negative. The onc I saw today was really lovely and thorough. He is going to consult with the Cons. Pathologist to see what she makes of my histo. Addenbrookes didn’t even take more nodes and also said I didn’t need chemo. After reading your story Magz i so wish I had asked for my histo at diagnosis way back in Jan 06. All too late now. Now I think my chances of recurrence are much higher than I previously thought. and to cap it all I have now osteopenia in my whole spine with some scoliosis. and the Onc thinks i have Thyrotoxicosis which is why my bone density is so bad after just 2 years.
sorry to pour out my troubles on here, its just that my lovely husbands first wife died of bc and i try very hard not to burden him.
love to all of you x
On the report I received from my surgeon 3 months after my op, it had a prognosis stat based on The Nottingham Prognostic Index (NPI) which is a widely used clinicopathological staging system for breast cancer prognostication. Thankfully I was in the good prognostic group with a 2.7 score.
Hi,
I was Stage 3, 1 lymph node involved and Her 2+ when diagnosed. I’ve seen 2 oncologists and they have both told me a low to moderate chance of it coming back, but in my case they do not particularly expect it. Every case is different as they say - when I was going for chemo the nurses used to tell me it was better if patients did not swap their prognosis as every cancer they deal with is different. I had an aunt who had BC back in about 1970, she had a mastectomy and a lot of node involvement;it was also in her family as her mum and sister both died from BC. She was on one of the first trials for 5FU, the only chemo drug available at the time. She died 2 years ago at the age of 83, her cancer never came back and she led a very full and busy life. My oncologist told me she meets many, many ladies like this, so there can be positive outcomes and cancer does not have to be a death sentence for everyone.
Hi,
Gracet - just wanted to say that my fiance’s first wife died of bc too - it is hard, isn’t it because you know he’s been through a terrible time and don’t want him to have to go through it again - though he’s been lovely and I did say if he wanted to split up, I’d understand but he said he wouldn’t even consider it. You’re the first person I’ve come across in the same boat. Also, I was lobular, grade 2 and no nodes - snap!!
Love,
Sally xx
Sally - another snap, I also was lobular grade 2 and no nodes, I think on another thread someone - it may even have been grace suggested we could have a section for lobular ladies - I think we are quite a rare breed as its only about 10% of breast cancers that are lobular.
Hi Grace - followed your other threads mainly because of the ‘snap’ element that Sally pointed out, so sorry to read that when you got your report there was info that you hadn’t expected. What a worry for you, I do hope it is sorted out quickly then you will be able to 'relax a little .
Spooks -interesting to read that your stats were based on the NPI - mine were from Aduvant Online - which I then tried to get onto but you need to be a medical professional , however having read Magz175 posting above I may try again.
Cherub - Swapping prognosis is a difficult one isn’t it, as every cancer is different hence all the different treatments we experience. I wouldn’t like to make anyone feel worse because they had read mine or give a false sense of hope and so try to be careful about how much info I share.
Personally though I like as much info about my own cancer as I can take in so that I know what I am dealing with. I found being given my stats and choices ‘empowering’ is I think the word. It made me feel I had a role in my own treatment - if that makes sense, and that for me is important.
On dx I was given a 35-45% chance of 5yr survival.I had a 2.4cm, grade3,triple neg tumour with one node out of 11 positive.There was so much vascular invasion that they were expecting it back within 10mths.But I’m still here and NED four and a half years later! At my last check up I was told that if I make it to 7/8yrs still NED I can consider myself as ‘cured’ Initially triple neg tumours are more inclined to return but as time goes on they end up with a better prognosis than hormone or Her+ ones.
Hi Doyle,
Not sure if the following is helpfu;. but I have just dug through my medical file and found two pieces of information I was given in 2003, after a WLE, and then total axillary removal.
The first was the initial histopathology report, after my WLE and sample node removal,which I asked my bc surgeon for, but it was never explained to me. At the bottom of the sheet, which listed the usual paramaters of type of bc, grade, size etc., it states my Nottingham Prognostic Index of 4.4. I think that puts me in the middle of risk recurrence, probably because I had a 2 cm ductal tumour, with 3/18 lymph nodes positive.
The other sheet was given to me at my first Oncology appt, to decide whether I should have chemo. It is headed “Share Decision Making” and is a bar chart. Not being a statistician, I found it a little difficult to put into context. I was surprised to note today that it states my general health was only “fair” - I guess because I was having a flare of Crohn’s at the time. It also states "Chemotherapy Regimen: Derived Anthra (Overview 98), which is the first time I have noticed this - guess it can be googled and may be something akin to the adjuvant online site.
I’ll try and reproduce the decisions, obviously without the bars!
Decision: No Additional Therapy
72 out of 100 women are alive in 10 years.
19 out of 100 women die because of cancer.
9 out of 100 women die of other causes.
Decision: Hormonal Therapy:
5 out of 100 women are alive because of therapy.
Decision: Chemotherapy
4 out of 100 women are alive because of therapy.
Decision: Combined therapy:
8 out of 100 women are alive because of therapy.
I figured that with the 72% figure of no additional therapy, plus the extra 8% of combined therapy, I have an 80% chance of surviving 10 years, but not at all sure if I have got this right. Perhaps some of the statisticians amongst us can comment?
I don’t know if this shared decision making (between the Onc and myself) was an individual prognosis for me, based on my histology, or whether it refers to the FEC chemo I was advised to have. I did have the chemo, then rads, and happily just had my 5th annual review and am NED. None of my doctors by the way have ever used the word “cure” or anything remotely like it, they just use “in remission”. That’s the way I look at it, and am thankful.
I am being treated at a breast care centre of excellence, so the way in which prognosis is approached in other hospitals, may be completely different.
Take care,
Liz.
One of my oncs told me that if you get to the end of 5 years remission and are NED, they can tell you you are “technically cured”, but that is not to say it won’t return in the future.