Like JaneRA says tho - there are no conclusive figures when on herceptin, which I am. They must be starting to accumulate some disease breakthrough figures soon tho wouldn't ya think. Just checking on the website tonight looking to book a cruise (I would not have found them remotely attractive before all this!), but not the thought of too much uncomfortable travel, and being in countries where the medicine is not quite what we're used to (a bit of Joyce Grenfell there!) is a tad unsettling.
Belinda - I'll settle for being in that 14% !! And I did get hold of Helen re genetics on private message so thanks.
My surgeon and oncologist have both said they feel bone mets are ' easier ' than liver and lung to control so I'm going along with them !
Just a stat quoted by my onc a few years ago..14% of women with bone mets never get other organ spread...I realise they don't live happily ever after..but interesting stat.
JaneRA - I've actually got the latest edition of Dr Susan Love's book but just hadn't thought to look in there so have just had a peep at it.
It still says that the average survival from time of appearance of the metastasis is between two and three and a half years according to most studies. Apparently 22% of patients with mets will live for 5 years, about 10% live with mets for more than 10 years and between 2% and 3% are cured.
She does stress that these are averages and there will always be women above average and goes on to quote how one woman had mets throughout her bones, had hormone treatment and was well 24 years later although they have no idea why.
Jayne - the figure being referred to isn't broken down according to where the mets are. Dr Love goes on to state that the main factors to predicting who will live a long time tend to be (she states these are not absolute) the length of time between original diagnosis and the metastasis; whether the tumour is hormone-sensitive or not and how many places it has metastised to. She also says that mets to the bone or the skin is less serious than mets to the lung or liver.
No the Susan Love figures don't break down re type of mets. And yes you're right of course...so much depends on what, where and response to treatments.
about the average expectancy for those with mets - does it break the figure down according to where the mets are? Mine are in lymph, bones and liver - and i'm sure it must differ according to what is where, so to speak? Jayne
I got the figure from Susan Love's Breast Book which is an American publication. Some people might argue its quite an old figure now, but it matches what I have seen anecodatlly from using sites like this for 5 years.
It's difficult to get hold of such figures...there is such hype around how people can live for a long time with secondaries...and the focus tends ot be on that rather than on realistic facts and figures.
Firstly I'm glad that you confound even your own expectations and hope you continue to do so and enjoy your life.
I was just wondering where you got your info about people with secondaries living on average for 2-3.5 years after mets diagnosis. Is it anecdotal from reading forums or is there research that shows this. (I'm not in that position as only had DCIS but like to keep an eye on how people are doing on here as 'there but for the grace of god' and all that...so I like to take an interest in these things).
I think your onc is just being senisbile in not giving you a timeframe. Really its impossible ot set the parameters of how long someone may live until they are literally weeks away from dying, particularly now with treatments like herceptin (which I think you're on) for which data just doesn't exist.
Bottom line is that on average people live two to three and half years after mets diagnosis...some live much longer, and some much shorter...and so much depends on response to treatments. precise site of further spread etc. I think the bottom line is that any of us, getting DLA, could be dead in 6 months or less, or could last a fair bit longer.
I keep being wrong on when I.m going to die (my last prediction was last November...and I was wrong!)
I'm like Belinda, trouble relating that ill woman that gets discussed at the onc's to the me that I want to be....hope you understand that. Never asked my prognosis, bit scared that it would be self fullfilling, I know how bad things are just don't want to hear it.
Yes that's very true Suzanne..my sister was going to request seeing my Mum's hospital notes (after she'd died) but we were advised that some notes may not be made available to us (they said due to patient confidentiality and this still applied even if the patient was dead) so we didn't pursue..there seemed little point and Mum had died so we had to draw a line. We then found out the death certificate was wrong with the cause of death (Mum had stage 4 ovarian cancer but she died from other complications) and we would have had to pay if we wanted to get it corrected...again there seemed no point as we never really got all the answers to our questions so weren't confident that they had really got to the bottom of the cause of death.
I'm just in the process of filling in the form to get copies of my notes, scans, mammograms etc. The hospital will provide scans, x-rays and mammograms on a CD. Under the Data Protection Act the maximum I have to pay is Â£50 and they have to be provided within a certain amount of time (40 days I think).
One thing I've noticed though is that if the hospital think that providing certain notes would be detrimental to your health/welfare they can actually leave them out ...and they don't even have to tell you that they have done that... which I feel defeats the whole object of asking for them in the first place.
I saw a copy of the report sent by my onc to my insurance company after which they agreed to pay out on my life insurance. Obviously not a cheery read. Like you Jane - I get a copy of the reports on the CT scans.
On the other hand he had already told me that there is such variation in response to treatment that any prognosis stands a 50/50 change of being wrong. He was willing to say that there wasn't much chance of me being around in 10 years, but that if I responded to treatment 5 years was a reasonable expectation. If I didn't - not more than a year. 18 months later all is going well so I'm definitely aiming at 5 years. I put my name down as a volunteer for the London Olympics when it was first announced and I'd really like to be able to go ahead with this..
Thanks to everyone for your feedback!
Celeste I feel the same as you.My Onc has my notes in front of her when I go for my treatment every three weeks.I would just like to sit and read them while having my treatment,then write down any questions I've got to ask her.I'm pretty clued up on my cancer so nothing will come as any surprise or frighten me.
I've never read my notes, guess I could do but have never wanted to. I did read the computer screen in the onc's office when I was first diagnosed but I couldn't relate to the ill woman (me) on the screen so decided not to read again. I'm not in denial though and fully understand for some of us the more knowledge the better. I know (and record!) my tumour markers and feel I've been listened to and have had my input into my treatments.
This huge pile of notes sits right next to me when I go to hospital every 3 weeks to have herceptin/pamidronate. I think it's rather like a huge box of chocolates when an external force has put you on a diet. So tempting. I too have had a quick peek, but no more, I was so frightenend of being 'found out'! Rationally these are my notes and I am entitled to read them. However at a previous hospital when I applied to have my notes copied to me - there were very definately gaps (no - note paranoid). At my current hospital I know my bcn will copy for me anything I want, and I always get copies of all medics correspondence, as is my right by law.
But I truly would like to pore through my own notes by myself, and if I don't understand something I will ask!
I had a quick peek once. Never again. I read 'prognosis - about a year' and then slammed it shut. That was about two years ago.
I always get copies of letters, too, and find it really helpful. I have also asked for print outs of scan reports and my tumour marker chart. When my file is left lying around I do sometimes have a quick peek.
Dawn - your file must be enormous. Mine goes back six years now and it is usually one of the biggest on the pile. You must need a portacab for yours!
I always get written copies of CT scan reports. I haven't asked for recent copies of letters to GP. I don't think my onc keeps anything from me though she hates being directly questioned. We had a hilarious discussion recently about what she called 'checking out'.
I think I probably have a pretty good understanding of the possibilities, probablities, certainties and uncertainties as they relate to my future. When I had second opinion form Marsden obviously I got copy of report to my oncologist. I think oncologists keep fewer secrets than we fantasise about.
In general though I think oncologists hate what they see as 'failure' yet they have chosen a branch of medicince with high failure rate. I think palliative care specailists are the honestest of the medics...
Like Geraldine I am with the Marsden. My notes go back to 1990 when i was first dx and a couple of years ago I decided I would like to see them all! They have a PALS room in the hospital. If you have one they are your best bet. They have the form you have to fill in. There is a charge that represents x pence per page and cannot be above something like Â£48 but am not sure what it is now. I also have all correspondence to my GP copied to me as well. Do be sure you really do want to read them because seeing it in black and white can come as quite a shock even if you are very aware of what is going on. I did find them very useful when I came to completing some of the forms for DLA - so used medical jargon to describe the extent of my bone mets 🙂
If they won't let you, you can make an application under the Data Protection Act for a copy of your records. They are entitled to charge a fee for photocopying but a lot of places only charge Â£10 unless it's an absolutely huge amount of stuff. Hopefully they'll let you though.
The Royal Marsden copy you in any letters to your GP (if you want them) - this has been really good as its often a few days later when you want to confirm what you have heard! Ask you onc. what they do - but you should be able to read your notes.
I've had a flick through them when they've been left lying around! my oncs pretty good and writes, reads reports etc in front of me giving me the chance to see whats there and to ask if I want.
I think the official advice is to have a medical professional with you to explain anything you dont understand etc ask your bc nurse, theyre usually pretty good but you are allowed to see them if you want
There is a procedure for reading your records, you need to ask next time you visit who you need to contact. It will be someone in Medical records.
I'd just like to know if anyone has read their medical notes when they go to hospital for treatment.
I would love to sit and read mine and don't know whether to ask my Oncologist or not.
Are we allowed?