been reading up on survival rates

sorry me again
ive scared myself senseless now
i know they arnt upto date studies a lot of them
but now i wonder if its worth going through all this to only last 5 or 10 yrs
i know i need to stay around as long as possible for my son but if im only here feeling ill from treatments is there a point?

oh god i wish i could stop using the internet
i suppose we are never cured and spend life waiting…

stop looking at stuff because you’ll drive yourself quite mad…you need to try to stay calm and get the facts - once you know what you’re facing you’ll feel more in control…just hang on.

and by get the facts I meant from those treating you, not thiings which may or m,ay not be relevant off the internet…thinking of you & sending lots of good wishes xxx

thankyou
im really going to have to stop it
i had had quite a good day visiting cousins
then i come home and sit thinking and looking on internet
i have never been so scared
even driving on the motorway my mind is wandering to cancer all the time
sometimes i cant believe it, that im functioning, ie driving,chatting,doing normal stuff and i have a deadly disease in me

and which ever way you look at it i wont be around as long as i would have been with out it

sorry just having a bad moment ot 2 and i thought i was improvong yesterday
thankyou for listening

I wish I could think of something to suggest that might help - I do think that once you’ve had MRI and get results you’ll be able to focus on what needs doing next -step by step - there’s really no point in jumping ahead of yourself…

Lincs lady -survival rates are just that, they don’t mean that everyone died or got a recurrance by year 5 or 10 or whatever and they certainly do not mean that everyone with a similar diagnosis has the same experience; two people with similar diagnosis can have completely different outcomes. Your individual prognosis depends on many factors and your treatment will be tailored to you and you need to remember that you are justy in an awful place right now. The shock of the first few weeks and the loss of security and safety are terrifying. A word of reassurance - although recurrance and death can happen most early stage women, we are told, are cured.

Lots of love and luck from someone who felt all the things you are feeling at more or less the same time last year.

Love Jane x

thankyou all so much
im going to head to bed ,kiss my lad and try for a few hrs sleep
i hope i will get the mri date through this week
thankyou so much for talking sense to me lol
and im sorry to be a pain
xx

Hi lincs lady,

I think you are in one of the hardest stages - we try to take on board so much information about this new disease we have been diagnosed with and there is just to much of it out there. We can’t begin to understand which bits apply to us either until we have gathered more information and so this vicious circle goes on for a while. I remember my early days - there was no internet and I wanted to scream at everyone on the High Street- I HAVE CANCER!!! or have a big notice on my head! Gradually as we absorb the info given by our medical team, and as we learn how to ask questions we begin to understand so be patient and if you read stuff on the internet you don’t understand - then ask. As for survival rates - why go there when none of the info seems that accurate or up to date - and even if it was how do we know which side of the statistics we would fall - the good or the bad? I am sure my stats have been very poor from the word go but 19 years on and I am still here - yes I have secondaries in my bones for 7 of those years. I am just really glad I never had the urge to ask. I do hope as you begin to get an action plan and start on treatment you will find it easier.

Dawn
xx

Hi Ladies,

I take a pragmatic view now, what will be will be.

This time last year I was happy, busy, healthy.

I’d just come back from a 2 week holiday and friends said I looked slim and healthy and I felt that way, 2 months later I was diagnosed, then when the treatment started (chemo) I never felt worse.

I don’t believe treatment is tailord to you, it’s just down to your onc and the area you live in, “one chemo suits all.”

I cannot worry anymore about it coming back, saying that of course I do but I can’t let it rule me anymore. I don’t live for the day I just hope that eventually I’ll have my life back!

x

Hi Lincslady,

Just wanted to send you a hug. Please don’t apologise for anything, what you’re feeling is totally normal, it is very frightening. I was just like you over 2 years ago, looking at absolutely everything on the internet, you just want to know everything! But we are all different in our responses to treatment so you can’t really go by the statistics. Once your treatment plan is underway, you’ll have more certainty and you’ll feel you’re doing something to attack the cancer. It does get easier.

Take care

Veggie

Take care

Hi LincsLady,

Sorry to hear that the things you have been reading seem so scary. After my wife (young at 48) was diagnosed in June, I couldn’t stop myself thinking the worst all the time - when I was away from her, I practically started mourning for her even though she was at home, fine! I then did a lot of research to find out as much as I could, and the more I learned, the less scared I became. I really believe that knowledge is power in this situation and helps a lot, but a small amount of knowledge from possibly the wrong sources can make things a lot worse. If you want to do research yourself, you need to stick to places like this site, the USA equivalent (breastcancer.org) and the Macmillan site (whatnow.org.uk).

We thought my wife had a 6cm, grade 3 (aggressive) primary tumour, with at least 2 lymph nodes involved as well, and I was in absolute despair. Then she had a mastectomy and Axillary Node Clearance and when the pathology results came back, it was so much better (or less bad) than I thought. The primary was 2.5cm with 1.7cm clear margin around the tumour, and no more lymph nodes than we already knew about, which were low down in the nodes (good).

Now that I know quite a lot about it, whilst I am obviously not ecstatic about it, I am really hopeful now as it is highly likely that we will still grow old together. The most important thing I learned is that the treatments are definitely worth it and make an enormous difference to the survival rate, especially for early stage (I and II) breast cancer (which yours is likely to be).

I have written about my own feelings and experiences above. As far as Janet is concerned, her philosophy is just to take it as it comes and trust in the doctors, and that approach seems to be working for her.

I really hope that your full diagnosis turns out to be not so bad and wish you all the best.

Hi lincs lady,

You sound just like me. I cant help myself, i look at statistics, spend ages looking at various websites in order to ‘educate’ myself. However, i have moments where it all gets on top and i am frightened for my future. What helps me to deal with it is knowing that its normal to feel like that and it will pass, rather like the pain we suffer with this. My personal stats are not that great, but i try not to dwell on it.

What i am trying to say in a very inarticulate way is that all of us here feel like that at sometime, it is why we seek out similar people as they are the only ones who understand what we mean. It is why even when i have finished treatment in two weeks, i will still look to this site to let off steam, reassure myself and accept the advice and comradeship offered.

Hope that helps you.

Linda

Hi Lincs Lady,

Where did you get your stats from? They are different everywhere you look. When I first got my pathology results after surgery, I went on the internet looking for reassurance. On the Cancer Research UK site I found I had a 20-42% chance of surviving 10 years - devastating news at 44. I was hoping it was out of date. Then from my onc I got the stats from the Nottingham Prognostic Index (NPI) - and that came at about 60%, but that is definitely out of date. Then I went on Adjuvant Online (you have to pretend to be a doctor to register) and that site gives me a 79% chance - and that is also out of date as it doesn’t take account of herceptin. So what a difference - 20% to 79%. I am choosing to believe the 79%.

I went back on the CRUK site recently, to see if they had more up to date stats, and mine is now showing as 30 - 50%. That is so out of line with everything I have seen elsewhere (and believe me, I read all the trial results & anything else I could find when first dx) so I cannot understand where they are getting their numbers from.

So do not despair!
xx

Hi Roadrunner,

I think most of the the stats are based on people from ten years ago which is why they are out of date. It is based on real people statistics. In the last ten years chemo has improved. Taxotere and herceptin were not around in general use and so i think that improves our chances. The one i looked at, cancer maths gives me a good chance based on the therapy i am having/have had. I think thats why i have a kind of optimistic hope i will survive to see my sons grow up but accept i might not. Gets to me sometimes but so does life.

All the best
Linda

Hi again Lincs Lady,

Regarding the calculators, I wrote an article in my blog about my feelings and experience of researching and using some of these (light.ofmylife.org/?p=61). I don’t know whether it is of help to you, but I did spend a bit of time reading some of the relevant literature about them.

Best wishes.

hello Lincslady
responded to you on another thread elsewhere, but can’t remember which - anxiety based short term memory loss, so please excuse me!
as someone who is part of the 10 year statistics can I just say that almost everyone I have met in everyday life or online has ‘bucked’ one statistic or another.
all I would say is that we can read, and listen to professionals and others and listen to our instincts or gut reaction, and see what happens with our results etc and thats how most of us manage to get on.
Of course you must be reeling,it takes time to find a way of thinking through it all, but you will. There are so many people on here who will be willing and able to support you.
Please don’t apologise for asking, checking or expressing your feelings, at this point and when you aren’t with the medics etc, its all you can do.
I hope you soon start to feel a bit better but keep talking
take care
monica