Hi feel really depressed. Formally had results today. Grade 3 - surgery couldn’t remove all the nodes. Now need 6 cycles of TACs, radiotherapy and then hormone therapy. Herp neg, oestrogen pos. Outcome according to Nottingham Prognostic index is 6.4 which is very poor. Anyone been in a similar position or have any views on the Nottingham Prognostic Indes. i feel I have lost all of my fight now and should just curl up. Di
Hi Di
Poor you. We all get hideous downs at various points. What do you mean surgery couldn’t remove nodes? Did you have surgery before and were nodes affected? Haven’t heard of nodes not being removed - they seem to be able to take them all out with clearance? Don’t get too hung up about the index - I get the feeling nothing is certain with this thing. Don’t lose your fight!
R
xx
Di,
I had a similar NPI score when diagnosed in June 06 and I’m currently well following chemotherapy, radiotherapy and on hormone treatment. Try to remember that the scoring does not take into account individual diagnoses and treatments. I try most of the time not to think about statistics cause they are always out of date and in no way individualised.
Good luck
Carla
thanks - apparently what nodes they could get at came in a ‘lump’ they were all fused together - couldn’t tell how many. Remaining nodes attached to veins - too dangerous to remove. I now have a clip marking where they have removed nodes up to so radiotherapy knows where to target. Originally I was down for axillary node clearance and WLE, changed after MRI scan to mastectomy and SNB However, at surgery it was apparently not possible to do SNB because nodes were in such a mess. Am I unusual?
Carla - thanks for your reassurance - i feel very alone. Di
Hi Di,
My NPI was also poor, I was diagnosed april 06, I had mastectomy, chemo, rads and reconstruction. One thing that I’ve learned is that the Nottingham prognostic indicator is very outdated. It doesn’t take into account new chemo’s such as the taxanes, hormone receptors and treatments such as tamoxifen or Her2 status and herceptin.
Try not to get too hung up about statistics or prognostic indicators…
Claire x
Hi Di
I also had a very poor NPI score. Stage 3, Grade 3 with 7 out of 14 nodes involved. That was nearly 7 years ago and following mastectomy, chemo, rads, 5years tamoxifen I am now taking Letrozole and have had no recurrence. There is no saying what side of the stats we will be. Don’t get depressed by stats we have access to so many more treatments now. Best wishes. Linda x
thanks Linda and Claire that makes me feel better. I wish I hadn’t asked now to be told everything. thanks Di x
I’ve not investigated the NPI but I have secondary spread to bones, FNA showed spread to underarm lymphs, I’ve not had ANY of the standard treatments (no surgery, no chemo, no rads!) but am doing well on letrozole 2 years after dx. Di, don’t blame yourself for asking for the information, but maybe try to file it away under “irrelevant and outdated” 
I really hope you do well with all your treatments.
I have a relative who is an oncology professor and he explained the NPI is just another diagnostic tool they use. When he asked for my diagnosis I told him Stage 3, 1 node out of 22, Her 2+ and he worked out I was about 5 on the scale which he said is what he would have expected in a woman of my age (47) before he had done the calculation. He also told me 1 node out of 22 was not a bad result.
I was told by my oncologists they would put me at a low to moderate chance of this coming back within 5 years, but on account of Herceptin treatment they don’t expect it. I also had an aunt who died 2 years ago at the age of 83. She had a very aggressive BC back in the 70s with most of her nodes involved. She agreed to go on the trials for the first chemo drug developed and her cancer never came back; she went on to lead a very full and active life and never looked back, despite both her mother and sister dying from BC. I think she was one of the strongest ladies I have ever met and also one of the most cheerful.
Diane
I think my NPI is the same as yours and I had similar treatment which I finished 3 years ago. I felt just like you at the time. My BCN said it wasn’t considered as accurate as it used to be and that oncologists use a program called Adjuvant on line which gives me a much better prognosis. The NPI was formulated a long time ago and treatments gave advanced so much since then. I sometimes wonder why they still use it.
Can someone explain how the NPI works?I used adjuvant online to get stats for 10 year Survival but dont understand the numbers you all quote for NPI.Thanks Vx
Hi Horace - If you enter NPI in your search engine all the details come up but basically it is size, grade and number of nodes. Put together they give you the NPI - there is then a scale which gives you your prognosis.
Kelly that is reassuring about the Adjuvant programme - now you mention it I can vaguely recall it being mentioned before. I have heard the NPI is out of date but then one has to ask why do they still use it and frighten people if it isn’t accurate. It has made me really, really depressed. I am heartened to hear your story. Can you recall what the progrnosis changed to with Adjuvant? thanks Di
My NPI result was 4.2…moderate.
Then tried Adjuvant and got 5 for initial dx and 21 for after 5 years of tamoxifen…don’t really understand what that means though!
karen
thanks Karen - did the oncologist to the Adjuvant for you or did you do it yourself? di
I did it myself…thats why i’m confused!!!
Horace…can you help please?
karen x
The prognostic indices whether Nottingham or Adjuvant! can’t tell any of us precisely what will happen ot any of us…but I think they serve a useful guide to possibilities and probablities (we are each individual…statistics guide but don’t rtell us about ourselves.)
My NPI was 6.8 (poor) and my Adjvant! score at time of ending primary treatment was about 18% chance of living 10 years.
Well here I am 5 years later and the ‘poor’ was correct…I have incurable regional recurrence…I doubt I’ll make 10 years so I’ll not be in the 18%…agian pretty much as I expected.
Once you have secondaries the indices change…the averages change…the average for living with Stage 4 is 2 to 3 and a half years post diagnosis of mets…some die much more quickly (as we know) and some die much longer after (as we also know.)
Knowing I had a poor prognosis right from the start meant I was able to take decisions I might not otherwise have done…about retirement, moving, money…I might have fallen on the good side of the stats for me…but I guess the decsions I took would still have been right
I know women with mets who had good NPIs…long now dead…and people with a bad NPI like me…actually alive longer than I truly expected 5 years ago.
Jane
Thanks Jane…so does my Adjuvant score of 5 at dx and 21 after 5 years of tamoxifen mean that is my % chance of being alive after 10 years?
Karen
Diane,
If you have Grade 3 and a lot of node involvement, you start at 6 points + the size of tumour x ))0.1 I think which meant mine is at least 6.4 which gives me a “very poor” prognosis with something like 13% chance of surviving 5 or 10years! No wonder I was freaking out. My adjuvantonline gave me something like 63% chance of surviving 10 years. Very different. I have no symptoms of recurrence and am 3 years past treatment and 31/2 years past diagnosis. I am now feeling more positive than I have ever felt since diagnosis.
I don’t know why it is still used. It was on my pathology report which is the only reason why I know it. I asked for a copy. It has never been mentioned by my onc. or breast surgeon. My BCN told me it was now considered very out of date. I hope this reassures you.
Regards
Kelley
Mine was 2.4 but I cant find the scale that gives prog.Adjuvant Online said 85% of 10 year survival
thanks Kelley - if it is so out of date I would rather not have been told. Who does adjuvantonline or works it out for you - the oncologist?
You are clearling doing very well and hope you continue to do so. good luck and best wishes to all of you - Di