Have just been given DLA after GP finally signed my DL1500 special. After 2 years of secondaries they must think I am sick enough! I have mets to bones and lungs and have almost finished 6 sessions of taxotere. Have been given a 2 year prognosis.
Any stories of hope out there of people still living after their ‘alloted’ time? Feel in desperate need of hope as relatively well in between chemos and find it hard to believe that I have only 2 years left with my three young children.
Love Rosdubh x
Hi there, did you ask for a progosis Rosdubh or was it given to you? I’ve never asked for a prognosis. I’ve been under the special rules since early 2004…I know lots of others who have lived long beyond their prognosis. One of the reasons I’ve never wanted to know my prognosis is because I felt it took away some of my control (for want of a better word) of the disease…guess I have very little control really but I don’t want to live my days with a countdown style clock ticking away in the background. Hope you can go forward, find some hope, live well. Take Care, Belinda…x
Me again, sorry! But just remembered I found these words, below, helpful when I was first diagnosed, stage 4, in 2003. They are from the Musa Meyer book, most of which is available to read for free on her advancedbc.org site. Take Care!..x
Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.
Hi Rosdubh,
I was diagnosed with secs to liver and bones in May 2004 I was just coming to the magic 5 years after primary. Wasn’t sure if I wanted chemo as I hadn’t had it before but if I did not have chemo onc said not many weeks maybe 6 as there were so many clusters in liver. Had fec for 6 months which bought me 18 months with out treatment. Two years of capecitabine, started tax last Feb/May had a chemo break for summer just done 15 taxol and looking forward to a chemo free summer. I have pamidronate for my bones only been having that since last May but results are really encouraging.
Treatment this time has really worn me down but over the next few weeks life should resume.
We are all different our cancers are too, plus responses to different treatments. I don’t waste a good day and don’t moan too much about a bad day. Well I try not to.
This and bc pals has been a godsend to me.
Have you got motorbility? We are on our second car well worth all the form filling.
Take care and keep us posted.
Love Debsxxx
I love that quote from Musa Meyer, Belinda.
I am a seeker after information and I too have never asked directly ‘how long’ because I know that no one can tell me…it always depends so much on response to treatments and also the particular pattern of progression in an individual. Any of us entitled to DLA could be dead in 6 months…or we may not be.
I hate beat the oncologist guessing games. See my blog for more on this.
best wishes
Jane
Hi Jane, I’ve just read your excellent blog. Your cancer has been so far removed from the ‘normal’ course of events, stages, directions, we are all told to expect, we all read of. Breast cancer is so much more of a complex disease than the media, including BCC presents. It’s not all find lump, the number of nodes, have surgery etc etc.
Your blog is dispelling many of those myths surrounding us, surrounding breast cancer. Reading another entry, I must mention I always look at the beams and especially if I’m told not to.
x
Hi Rosbudh,
You will just have to defy that prognosis because you have such a lot to live for with 3 young children. After all, the oncs are just human like us, so there is no logical reason why we can’t defy them!
All the best with your defiance!
Dee x
Hi Debs
Enjoy your summer without that horrible ‘c’ word. It promises to be a good summer, so lots of fun things.
Dee x
Hi Rosbudh
Reading your post i had to tell you about my other halfs aunty. When she was initially diagnosed things were too far gone and she couldn’t have chemo due to an adverse reaction she had to it. She was given 6months top. Totally discusted with this news she told her oncologist not to be so stupid. She was having none of it. The cancer at one time seemed to stop growing and it was as if her own body was killing it off. Bu this last year it seems to have reared its head again and has spread everywhere. She has proved them wrong though and 6 years on she is still here.
I was diagnosed in May 2007 with locally advanced G2 which was initally thought that there was no lymph node involvment. After surgery it was revealed that 9 out of 16 were. My other halfs aunty has kept me positive and i feel that my journey would not have been as easy (if you can say that) if it wasn’t for her and others like her.
All the best and please keep positive
Love and Hugs
Karen
Jane
I was initially turned down for DLA when i applied which was as soon as my oncologist told me to take time for me and that work was too much for me at the time. This was half way through my chemo. I appealed (good old aunty, see above told me too) after appealing i was accepted at the middle rate. I returned to work last march and have filled in another DLA form which again i was accepted but this time at the lower rate. You should have been accepted at the higher rate. Get back onto them and once you have been accepted you should be paid back pay from the date that you first claimed.
Hope this helps
My website is on my profile
Karen x
Hi Rosdubh
I personally ‘only’ have bone mets, but in the last week I have been told about a lady living locally who had bc first when she was in her early 40s, was fine for about 15 years and was then dx’ed with secondaries to her lungs and bones. That was over ten years ago and she’s still going really strong and was working up until a year or so ago when she retired aged 65. So please don’t give up hope, there are always stories of encouragement out there which, even if we don’t all attain that sort of survival period, give us something to believe in.
Take care
Lesley xx
Hi Rosdubh
Like Lesley I ‘only’ have bone mets. I am sure you know my story, but for those that dont I am known to frequently repeat it :). My dx was 19 years ago when I was 45. I have not been cancer free all that time though - frequent new tumours and recurrences and then extensive bone mets in 2002. I think to anyone who thinks they should be entitled to DLA just dont give up at a first refusal. My GP laughed and said good gracious you aren’t that ill! So I asked my oncologist and she said of course - and signed a DS1500 Special Rules which makes the whole application much simpler. I was awarded top rate for care, and when I applied 2 yrs later for mobility it was backdated to the original care application and at full rate.
I know much of this doesnt apply to you know but i put it here in case others are struggling with getting DLA.
dawnhc
I meant to add to my post (Dawn has just reminded me!!) that I also get full rate DLA - my breast care nurse sorted it all out for me - even though my oncologist is optimistic about me sticking around for quite a long while It seems that if you’re Stage IV, even with a relatively hopeful outlook, you’re entitled to full rate DLA so I’m just enjoying the money now and not thinking too much about why I’m getting it.
Since Feb this year I have received full rate DLA. I have mets in bone and peretineum. GP happy to sign DS1500 special rules (Onc would have signed it as well), and McMillan support from CAB completed the form. Like Lesley, my medical team can see me sticking around for a good while. If I hadn’t received DLA, McMillan advisor said she would appeal against the decision.
This money has enabled me to reduce my hours at work (I was struggling, feeling really tired, achy joints etc) and has given me more, quality time with kids and a little me time.
Take care
Hi,
I don’t get any DLA although my incapacity is under review at the mo because I have been retired from work and my pension made up to what it would have been age 62 (this means I’m not allowed to do any paid work ever again). Also it was time for me to fill in another what I am and am not capable of form. DSS told me to ask onc about special rules but she will only do it if the expectation of survival is less than 18 months as she thinks it is pushing it a bit otherwise and although I have bone secondaries, she expects me to be around after that. I’m fine with that as at least I have my company pension and I’m waiting to see what the DSS’s response to my latest form filling exercise is. I have my next bone scan in June so fingers crossed that will still be stable. Did have a scare with poss skin mets this week but surgeon said it’s all ok - he was more concerned about whether my spine is giving me pain or is tender in the affected area(it’s not !).
You should get DLA get the citizens advice to fill it in for you. Loads of people get it for other illnesses , and a lot in my opinion not as serious or life threatening as BC As far as I am aware a dx of secondaries is enough. What has she a problem with Of course you may be here in 10 years but you may not. I don’t always see same onc so if you see another onc ask them Ask your doctor will he/she not help. Hope you challenge this love Eileen
Thanks Eileen - I think part of me is happy enough to think my survival rate is longer than 18 months and that because I feel ok at the mo and can manage financially, I would be a fraud applying for it ! I know I’m not and that I have an incurable illness but even so…I rang Macmillan helpline and they just said to ask the onc. CAB will be my next port of call as you never see the same GP round here twice and some are better than others. My bcn is very good but I don’t like to pester her either !
Liz
The Age Concern has just been to my brothers and he said she was brilliant. He only expects the lowest rate but she was so thorough that he said he doesn’t know how he is walking about after she had finished with him. She listed absolutely everything, and he’s ok really just a hand problem. He was very apprehensive as he thought she would think he was laying it on thick. Keep telling yourself it is your right to DLA. You could try for mobility too if bone mets are giving you the slightest problem. And if they aren’t say they are to age conc person. Unfortunately you have to lay it on thick, so what you have a life threatening disease. You may have to wait a few weeks for the Age Concern to come but well worth it. Hope you get it sorted. Eileen XX
I said cab before in earlier post I meant Age Concern. my brother is 54
don’t think cab do dla anymore.
Hi Liz…I’ve been getting DLA and like Lesley the full rate since 2004…x
I have been receiving DLA at the lower rate but have just recently been diangosed with secondary to the bone (spine) Still waiting for more MRI and CT scan results to find out if it has spread to other areas. Should i now be getting DLA at the higher rate along with care allownance because it is incurable and i am in a lot of pain within the neck area where one of my vertebrae has already collapsed and also in the lower back. It takes me a good 10 minutes to get me out of my chair. It is bery cagey to what you are entitled too.
Karen x