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Very down re prognosis

17 REPLIES 17
BrendaB
Member

Re: Very down re prognosis

Hello ladies,

Just been reading all your posts and feel better for doing so. Must admit I have been stat. obsessed for the past few months, my head's been going round in circles and getting nowhere fast! Time to get on with life the best I can and concentrate on things that make me happy! X

Flower2016
Member

Re: Very down re prognosis

Thanks Sue for your really lovely inspiring words x

Sue54
Member

Re: Very down re prognosis

Hi Flower, its a number thats all and having worked in stats it only takes some small change and you can swing from showers to sunshine. In all these stats what they cant tell you is what the heck those that didnt make the ten years actually die of, and that fact would scew the figures completly. So ignore them whats important is what you do with your time and how you live it. Enjoy life youve been given that second chance live it so we can help thenext generation get even better stats !, luv SUe xx

Flower2016
Member

Re: Very down re prognosis

Thank you again for taking the time to support me. I really appreciate it. So I am thinking.....I am on TAC x 6 and that is from what I can gather a more recent chemo (Predict data was 1999-2003). Also was 5500 ladies with likely the majority being over 45 as 90% are and I am 42. Also am very fit and active and this has been shown to decrease recurrence by 40%. So I reckon I am now at 75% at least! brilliant! Ha ha 😉

GeriF
Member

Re: Very down re prognosis

Hi Flower, sending big hugs to you as i have been experiencing the same. I felt as though my triple neg with node involvement diagnosis had handed me a death sentence. I googled all day, read the stats, bought the books & lived it 24/7 until i hit rock bottom. I gave myself a good talking to, refused to google, limited my access to all things cancer & decided to do it 'my way'. I feel so much more positive since. The advice on this thread is fantastic. Stay strong my lovely! X
Charys
Community Champion

Re: Very down re prognosis

""all the time you are looking over your shoulder worrying that the past will come back you aren't looking forward and you could get smacked by a bus!!""

 

That is a really useful phrase...... I like it !

wendyf12
Member

Re: Very down re prognosis

Hi Flower,

 

Echo everything that the others have said but wanted to just say please don't let the numbers get you down.  I remember reading everything, using all the prediction tools and working myself up into a real mess when I was diagnosed aged 38.  I had 2 young children and dodgy genes from my mum and nan who both died from cancer, my mum at 45! I was convinced that I wouldn't be one of the "lucky ones" who survived...planned my funeral and everything.

 

But, 9 years on I'm still here, no evidence of disease (as far as I know) and determined to be here long enough to bounce grandchildren on my knee.

 

Live everyday to the full, chances are that given the amazing work the doctors and scientists do, you will still be here in 10 years and thinking, like I do, well that stress really wasn't worth it.  As someone close to me said (and I'm not sure if this will help you or not, but it did me - gave me perspective) all the time you are looking over your shoulder worrying that the past will come back you aren't looking forward and you could get smacked by a bus!!

 

Wx

Sameoldme
Member

Re: Very down re prognosis

Hi flower......that's the spirit 🙂

 

Predict is a mathematical model intended to help oncologists determine and recommend the best course of treatment.  Without wanting to make you wobble(!!!!) the MATHS on the tool suggests:

 

If a 45 year old discovers a 30mm grade 3 lump that is ER/HER2 positive, has 4 positive lymph nodes removed and they have NO treatment (other than WLE or mastectomy), the stats say that 23 people are likely to be alive after 10 years.  However if they have ALL recommended treatment i.e. chemo (e.g. FEC-T), hormone treatment (e.g. Tamoxifen) and targeted biological therapy (e.g. Herceptin) then a further 43 people (66 in total) are alive at the end of 10 years.

 

Does that make sense?  

 

Anyways.....pop that insensitive oncologist remark back where it where belongs 'in the delete/recycle bin'.....onwards and upwards my lovely......and listen to your Mum hehe x

Flower2016
Member

Re: Very down re prognosis

Thank you everyone for taking the time to post for me. It does help to get some stupid number in a bit of perspective and I will refer back to this thread when I wobble. Sameoldme....how does the figure double? Is it not based on full compliance with all treatment offered? Just interested.....

Anyway, I will continue to try my best to be fit and healthy despite this illness and % and hope for the best xxx

Sameoldme
Member

Re: Very down re prognosis

Hi again....as many others have said the prediction is based on data collected from thousands of women up to 10 years previously.  It is best interpreted as xx people of a similar age with a similar diagnosis are alive 10 years later, whereas this doubles when people take advantage of the whole range of treatment available to them. It is only a general guide to possible outcomes, and I seem to remember reading somewhere that the % who didn't survive were not necessarily due to bc.

 

Treatments have moved on even in the nearly 5 years since my diagnosis, and research is moving on apace. I'm not sure that was a very helpful thing for your Oncologist to tell you, as it was bound to make you worry.  My Onc didn't ever mention stats, only said she was committed to giving me the best possible treatment to prevent a recurrence!

 

Hope that helps a little.....hugs x

Charys
Community Champion

Re: Very down re prognosis

There we go.......it's the other way around....60 percent of non recurrence in  10 years. Honey, you know that's not so different to the rest of us, some a bit higher and some a bit lower. You know though, and I don't mean this nastily as I don't wish this on anyone ever, but someone else you know of your age could have a MUCH worse chance than you for any number of medical reasons! I understand though, it's the knowing and hearing of the diagnosis stuff, it's distressing. I'm sorry it's upsetting you so much, but you will move on from it as you are further along the treatment line.....

 

xx

Flower2016
Member

Re: Very down re prognosis

Thanks everyone. I personally have not looked at the graph. I do not know enough of my data to do it and don't want to. Oncologist told me I have 60% chance of being alive at 10 years Charys. It just scares me a lot, and I have been crying and upsetting my Mum who is trying to be positive for me. I wonder if extra chemo would help? Maybe that is stupid? I just want to un know this information! Xxx

Charys
Community Champion

Re: Very down re prognosis

.....and as I said on another thread elsewhere........the graph thing isn't a natural way to live. I mean everyone if they were given a graph of 'survival' and likelihood of getting this and that ....it would be an incredibly depressing and a horrible way to live. If you made a graph of the likelihood of the person crossing the street making it ok, or survival of your neighbour climbing a ladder, or even of someone driving to the supermarket then those'odds of survival' could be far worse than you are seeing yourself now. There are people out there with possibilities of awful medical things happening and they aren't aware of it, so live happily jogging along. So, just because we have been checked and are being treated it doesn't make our odds of living a long an happy life less than anybody else to be honest!!!

Jobey68
Member

Re: Very down re prognosis

Hi Flower, please don't torture yourself by fixating on your so called survival rates, I did for a while but it just dragged me down too much at an already torturous time, I made myself just focus on getting though each day, my brother said to me when I was diagnosed and stressing about what may be , "your alive today so just enjoy it and live, tomorrow you will get up and be alive still and so on, what is there to gain today by wasting the time worrying about what hasn't happened" he was so right too and I remind myself of it on a regular basis, you are doing everything you can to help prevent a reacurrance and new trials and treatments are coming along all the time so long term survival rates of getting better and better , sending you a hug Xx Jo 

Charys
Community Champion

Re: Very down re prognosis

HI flower,

 

was it 60 percent likelihood of recurrence or 60 percent likelihood of non recurrence? ( therefore a 40 percent chance of recurrence) The reason I ask is because that graph gives you the 'survival statistics' with the bar and not the 'chance of recurrence'. Actually I know what I mean , but it probably isn't making sense to you. ;0)

 

Here's the thing, either way, these are statistics taken in 2010 from a few thousand women who had BC surgery in some part of the U.K. Take it with a BIG pinch of salt I suggest and not get too hung up on it. I was in the first few weeks after diagnosis, and then realised that it is a very crude tool , who's aim is only really to help with decisions on differences that treatments make. There are many individual variables which it doesn't take into account, and statistics like this are not something we should pay a huge amount of attention to....as remember they are not based on YOU, just some collected data from other people. You could already be in the 'non recurrence' category with your treatment for all you know...but that's the trouble with graphs and numbers ey.....they don't tell you which side of them you sit on and therefore make us anxious. Please also remember a key fact, this is now 2016, and in a few years it will be a decade since those stats were taken, times are a-changing very fast with BC treatments at the moment. 😊

 

CHarys xxx

On a diversion
Member

Re: Very down re prognosis

Hi Flower,

 

I agree the survival statistic mess with your head ... And it is all so unfair. Even babies have cancer ...

 

Someone said to me that even if you are given a 2% chance of survival in 10 years, remember statistically that means that 2/100 people will be alive in 10 years and that might be you ...  Predict does include radiotherapy as it is standard treatment. 

 

I am usually fit and healthy and I think it does make a difference. I have been very ill this week but being fit and healthy before helped me get over the worst sooner. The other people on the ward were much older by 30-40 years, older than my parents. Even they felt shocked by their diagnosis and struggled to come to terms with their mortality (I was thinking I will be amazed if I live as long as any of you). 

 

I really don't think the number of years you live is as important as what you do with the time you do have. 

 

Isabelle xx

Sameoldme
Member

Re: Very down re prognosis

Hi Flower2016.....predict is just what it says 'a prediction based on people of a similar age with a similar diagnosis' based on historical data....that's how it 'predicts'.  Easy to say but not so easy to do, please don't get hung up on statistics. In my profession we say there are 'lies, da**ed lies and statistics'. Although it can be a helpful tool in deciding treatment options and likely benefits. You will see on the forum many people who have similar diagnoses with different outcomes.  My colleague had an almost identical diagnosis to me nearly 5 years ago...she chose not to have chemo, I did and we are both still here, happy and healthy, to tell the tale, although predict gave her a much poorer prognosis than me.  Although difficult, please try to live in the moment....use your energy to deal with chemo and resist worrying about the future, which you can't accurately predict. I have learnt mindfulness, use complementary therapies such as Reiki since diagnosis and only allow myself a maximum '10 minute worry window' every day where I can think about the 'what ifs'. Then I get back to, and on with life.

 

All the best for the rest of your treatment.....be gentle on yourself.....take care xo

Flower2016
Member

Very down re prognosis

Hello

I don't know if anyone can help.....I am going through treatment now (had madtectomy, now chemo) but am very down re my prognosis. I have been told 60% chance re 10 years by oncology. At aged 42 this seems terrible. I am upset reading re others with figures that are much higher only as wish it was me. I noticed Predict does not include radiotherapy. Is that because it is assumed you have it? I am also very fit, active and well (even despite chemo) and my correct weight which is not factored in. Surely that would help. This figure is really upsetting me and I have become a bit fixated on it with all the time on my hands. It is ruining my happiness and I wish I did not know it. X