Hi Weepixie, it sounds like you have had a rough time with a late diagnosis. You don’t say what your personal situation is re partner, children or age etc but I would advise two things.
Contact the Macmillan nurses as they can provide you with lots of stuff, such as practical financial advise about benefits etc. they can also provide help with pain relief etc.
Also I have made very good use of a clinical psychologist since my Dx two years ago. I can discuss all sorts with her and she keeps me rational and positive. There should be one available through your oncology dept.
Trying to get an accurate prognosis is a waste of your time because nobody can actually say! Everyone is different in the way they respond to treatment etc.
i have bone mets and I have found this site very helpful over the past two years. I am sure that some people in your position will join in this discussion soon. I have also found attending the breast cancer care support groups once a month very helpful. If you give them a ring they should be able to tell you where your nearest one is. I attend the one in Sheffield.
I do hope you will get some more replies soon. The breast cancer care helpline is also a good starting point.
you are not alone as there are many ladies on here with lots to share, and many people who have been living with mets for a long time. Don’t be too hard on yourself and if your friends and family want to help, let them x
thinking about you x
suzanne x
Thanks for making me feel welcome Suzanne.
I’m in touch with a Macmillan nurse at my chemo unit and she is very helpful. I saw a benefits adviser when I had to stop work but he couldn’t find anything we’d be entitled to. I’ve not come across a psychologist yet but maybe that’s something I can look into now. I am going to my first local BCC group meeting later this month so I’m hoping to meet some other secondaries girls. I am finding it quite tough at this stage dealing with the fact that everyone else who started chemo with me is moving on but I’m stuck in limbo on my Herceptin and have hit a bit of a low point while they are all celebrating.
I am finding my way around the forums and discovering all sorts of great information. I’ve actually spent most of the day reading threads on all sorts of topics. My head is spinning with all the new things I’ve learnt.
Hello Weepixie, sorry to hear your news. As someone with secondaries, you are automatically entitled to Disability Living Allowance. I think this works out at about £130 a week and is not means tested, so won’t be affected by any other earnings in your family. Your GP or onc need to complete a form (can’t remember the name - someone will flag this up) and then get your Macmillan nurse to fill in the DLA form. This is a very useful benefit as it allows discounts on rail tickets (disabled rail card) and some theatres; you can apply for a cinema card - CEA card - which allows 2 for one tickets at most cinemas; you may also qualify for a free travel card - contact your local council. I also get a taxi card which allows me big discounts on taxi fares. These things don’t change your situation but can help ease financial worries and make life a bit easier. I was diagnosed with liver and bone mets plus suspect lungs and lymph node involvement in January 2010 and my organs are now NED (no evidence of disease) after various hormone therapies and chemo.
all the best
Alison x
Thank you Alison. Where can I find out more about the automatic entitlement to DLA? The Macmillan benefits adviser didn’t think I should apply for DLA ao I didn’t. I’m familiar with the forms as I have completed them for other family members. Anything extra would be a huge help as my husband was made redundant the same week I got my diagnosis. What a week that was!
Hi Weepixie - re DLA. It’s not an automatic for secondaries, but it is a bit of a postcode lottery! Some oncs happily sign a DS1500 on sec dx (which means you may have less than 6 months left) others, like mine, said ‘you’ll be around for years - I’m not signing it’. In some ways I was very happy to hear this, in others, I could have done with the money. I ended up applying the normal way, putting things down as they are on my worst days, and get high mobilty (which gives a blue badge which is so useful) and medium care cos I don’t need night care, but for an indefinite period - DS1500 is 3 years. Obviously with PIP on the horizon the indefinite won’t be, but hopefully will mean I just transition rather than have to be assessed.
As regards your prognosis, I was told on sec dx (aug 11) (primary Mar 09) that the avergae for secondaries is 2/3 years, maybe more for just bones. I’m bones only but to quote, multiple mets in multiple places, so not just 1 or 2 
. I was quite depressed by this, but have since discovered this stat dates back 10 years plus, and was considered inaccurate at the time, but I think given the lousy recording of secondary bc, and its so mixed forms, is the only one thye’ve got. In the last 10 years there have been so many drug advancements (AIs for one) and new chemos - Capecitebine for another - I love Cap - just been told my 3 cycles have held my bones stationery! - abraxane as a kinder taxotere etc etc.
The bone mets thread is very active, and Mrs Blue has started a liver mets one as well - so if you’ve not discovered them, have a look. There’s also another breast site, bcpals, which is somehow ‘more intimate’ than this one, if not quite so well used.
Chin up and keep posting!
Nina
Via BCC:
Special rules
If you have secondary breast cancer you may be able to get DLA quicker and easier. This process is called special rules and is applicable for people who may not be expected to live for more than six months. This does not mean your allowance will stop after six months, you will continue to receive the allowance while you still need it. If you are caring for someone you can claim on their behalf.
To claim under these special rules, complete a DLA claim form and ask your GP, cancer specialist or Macmillan nurse to complete a DS1500 form which they will have copies of. You cannot get one of these forms yourself.
For more information on this, visit www.direct.gov.uk/disability.
Weepixie, will you leave this with me? I am seeing my Macmillan nurse on Wednesday and will ask if the DLA is an automatic entitlement - I may well be wrong. However as long as your doctor will sign the DS 1500 then you will be able to apply. Thank you, Nina, I was unaware that this was dependent upon postcode. Most docs will sign the form even though you are likely to live well beyond the 6 month criteria as it is impossible to state, with accuracy, how long you will live. If you don’t mind posting where you live, I will be sure to ask my nurse for you. The benefits system is a minefield, however I have found this money absolutely vital as I am not entitled to any other payments.
I will report back.
Alison x
Thanks Tawny - I’m in Aberdeen, and only know of 1 other person with secondaries here - there are obviously more but none of this site, and Sparkler on the bcpals site, but she has lung mets, so may be viewed differently. To be honest, getting what I do is I think what I’m due - I don’t need help at night so would feel guilty being paid for it - but I do disagree the fact some get it easily and others are refused point blank. I know gail5 (on both forums) is Edinburgh based and she was refused a DS1500 too - there’s an active thread on it on the bcpals website.
Nina
Hi Nina. Yes, it does seem unfair that we are not all treated the same. I wonder if there are differences in policies between Scotland and England even though we are all in the UK. I’ve found this payment invaluable. I did go to a Secondary Breast Cancer course in London where a benefits advisor told us always to appeal if we were refused DLA. Of course, it is slightly different if your own doctor will not sign the DS1500 form. I guess you could approach your oncologist if this happened. Anyway, I will investigate further tomorrow.
Alison
Took me an age to find this post again. Am seeing my Macmillan nurse tomorrow, so will report back then.
x
Just a bump to get us a bit higher in latest posts - took me ages to find too!!
Nina
OMG We’ve had no internet here for more than a week (if I had hair I would have been tearing it out!) and then I couldn’t find my way back to this thread so sorry for not responding sooner. I’m also in Scotland so it does sound like the policy on DLA may be different here. How fair is that?
I’ve not had the courage to ask doctors about DS1500, on one hand it would be very useful to be able to apply under the special rules and have some cash coming in but on the other hand it would depress me knowing why I was entitled to it. Do people tend to ask GP about this or their oncologist?
Hi girls,
Diagnosed with bone mets January 2012 and liver mets June 2012… On Xeloda - had 6 cycles already. Keep fighting every day. It is great to read all your stories and take courage from all of you! This journey is so tough…
Aha. Found this thread again. I spoke to my Macmillan nurse (she is NOT a benefits advisor) and she thought that as long as your GP or onc signs the DS1500 form you should automatically be eligible for DLA. This is a form that should be filled in by a professional. There was a Macmillan advisor who used to come into my old hospital who did mine. This is probably worth checking out. Having DLA opens up a raft of other discounts and benefits. If you are struggling financially it will be a godsend and it is NOT means tested. Weepixie, I actually phoned my GP’s secretary and she got him to sign it. It is something that they are very familiar with. it may seem a scary step but it could really help you and you can reapply every 3 years.
Things have been going a bit wrong for me healthwise hence the delay in replying (also couldn’t find the thread). In the last week I’ve had a change of hospitals, a blood transfusion, a picc line fitted, chemo started yesterday and I had an MRI scan today and am having a bone scan on Monday. Absolutely drained, physically and mentally though do feel better after transfusion.
Wishing you all well.
Alison x
Alison,
keep fighting girl! My thoughts and prayers with you. It is a bad period but you will go through! Don’t give up
All the best
Valia
x x x
Ooh I hate this waiting room! Had appt this week for what I thought was ultrasound followed by liver biopsy. Wrong- just ultrasound to see if liver biopsy could be done, even though they said it could from the ct scan. Hospital then phoned to say biopsy could be done but because of a block alert in the hospital it can’t be done till 2 Jan. Seeing onc 18 Dec and she was planning on biopsy being done by then so she would know what treatment to put me on as she feels that my receptors might have changed. In the meantime, the lumps in my neck have got bigger and even my OH commented on the swelling yesterday, but it does look better today.
Really hope that onc will not expect me to wait another month before she decides on treatment. Currently on herceptin, pamidronate and exemestane but something isn’t working. Feel well at the moment, just had a wonderful holiday which helped, but know how quickly things can change with this illness. Really trying to keep calm and hope that things not progressing too much. Find myself wishing the days away till the 18th, yet wishing time away is the last thing to be doing with secondaries but know that you ladies will understand.
Alison, all the best with your bone scan tomorrow. Valkeh keep fighting, we are all alongside you.
Liz x
Liz your post moved me. Hope you get your test and results ASAP so you can have your treatment. Thank you for your sweet message.Really helps to know you are less lonely than you feel.
Lots of love
Valia
x x x
Alison (Tawny), thank you for taking time to reply even though you have had so much else going on. My very best wishes to you I hope you are OK.
I saw a Money Matters benefits adviser during the week (found her via my son’s social worker) and she was surprised at the advice from Macmillan. By the end of the week she had DLA application in progress and DS1500 completed by my GP. I didn’t read it (too scared to see it all in black and white) so no idea what it actually says but she told me it was strongly in support of the application which will go through under special rules. She is ready to appeal if it’s refused. She has heard of cases where they refuse to consider DS1500 saying it is not appropriate but she personally had not had that happen to anyone she dealt with so it seems that in Scotland it is not automatic that DLA is awarded even with metastatic disease and DS1500. We will just have to wait and see, a DLA award would really help to take the pressure off.
Let us know how you get on weepixie. Are you in Scotland or England because it would be interesting to know if they treat patients in different areas of the UK in different ways. Val
I will report back (probably won’t hear anything until the new year now)
I’m a Scottish lass too 