No More bad news from the uncoligist.

Just back from uncoligist. No new news - all spread is in my spine. The compression wont get any better, so I’ll not be able to dance again or even walk properly. I’m going to miss my dancing so much - its always lifted me up and made me happy.
I asked about cyber surgery, the doctor said I’d get no benifit from it as the nerves are damaged and will not heal.
So I’m to take a bisphoshonates and letrozole.
The breast nurse is to phone later in the week to see what help I can get.
Uncoligist wont sign a DS1500 as with bone mets I dont meet the criteria.
Any way things dont look to bad and I should be able to return to work.
Glo

That doesn’t seem right. My oncologist sorted my form out almost as soon as I was diagnosed. I’m bone mets too. I get full disability benefit. I’ve also been able to get a blue badge which has been a real boon when I’ve been a bit creaky and sore. Get in touch with your Macmillan nurse for clarification. My reading on it is that mets =stage 4=terminal…eventually. I hope I don’t upset you being blunt. I don’t plan to shuttle off anytime soon! My macmillan nurse filled the form in for me. I just had to sign it. No idea what she had written, a case of ignorance is bliss

X Sarah

Ditto for me. I would have thought you would be entitled to higher rate DLA and mobility…particularly because of your mobility difficulties. Ask the BCC nurse to ref you to any cancer charity which works locally to see benefits advisor.

Hi Glo, sorry you didn’t get more encouraging news. Try not to be too despondent though. I think you’ll find that once the Letrozole kicks in, and the spine tumours stop getting their oestrogen, they will shrink, and stop compressing the nerves. You may then find that not as much damage has been done as you currently fear ( and then you might even be able to reconsider Cyberknife).

Sorry to read your news Glo. I thinbk you shouldn’t give up on your claim for DLA and speak to your Breast Care Nurse and/or a McMillan nurse as I am sure you should qualify for this benefit. Also you should be entitled to a Blue Badge which can help you park your car and conserve your energy. If you don’t drive you can use the badge in any car you are travelling in. I am on Biphosphonates and have been on Letrozole. If I can help you in any way please feel free to ask anything. Have you found the thread “Bone mets please join in” ? We are a friendly bunch and suport each other and share experiences. Take care. LOve Val

Hi Glo,
I agree with the others that you should get some help to fill in the forms and put in a claim for DLA. The DS 1500 form is an accelerated process designed for those whose life expectancy is estimated to be 6 months or less: some areas seem to apply this to all people with mets, others don’t. My area doesn’t, which I personally agree with as certainly when I was first diagnosed with bone mets I felt in no way disabled (I know others will differ, but this is my personal view).

HOWEVER, even if you cannot go the DS 1500 route, you can still apply for and be awarded DLA: if your mobility is affected, then you should definitely go ahead and claim. Once my mobility began to be a serious issue last year I went through the normal application process, and was awarded the allowance. As Val says, the blue badge, which is completely separate, is also invaluable.

Best wishes,
Jx

With regard to 'claiming DLA under DS1500 rules. In order to claim under DS1500, the patient has to be terminally ill. While someone with stage 4 BC is for the most part terminally ill, Social Security legislation defines terminal illness in a particular way. The legislation defines terminal illness as, ‘a progressive disease where death as a consequence of that disease can reasonably be expected within 6 months’. The reason your Onologist has refused to sign your form is not because someone with bone mets doesn’t qualify, but because he/she thinks it is unlikely you will die of your disease within the next six months (and that’s good news).
When doctors decide whether someone is likely to die within six months the main thing they take into account is the aggressiveness of the persons cancer and how it is behaving - not whether the person has bone or visceral mets. While people with bone mets tend to live longer than those with visceral mets, a situation can arise where someone who starts off with bone mets rapidly progresses, due to the fact that they have a very aggressive/ uncontrollable cancer, while someone with visceral mets survives longer, because they have an indolent cancer, and respond well to treatment.
Having said that, you could still ask your GP to complete the DS1500 form for you. If you are on good terms and they are helpful, they may oblige (and they do get an extra payment from DWP for doing it). Alternatively, you could apply for DLA in the normal way. Mamillan, or the Citizens Advice Bureau will be able to advise and help you complete the application if you require help.

Thank you all for your advice. Hubby has now telephoned local office for a blue badge. I’l ask my GP to fill out any forms.
GP is quite upset that she missed the cancer coming back. Sadly the only area that wasnt xrayed is the only one to show.
I could have been dx 8 month ago. I dont blame her its just sods law.
Yes its nice to know I’m not that ill. I have plans and th8ing to do.

Regards Glo

Hi, just read this thread and though I’d let you know that, although my oncologist wouldn’t sign the DS1500 for precisely the reasons lemongrove stated, my GP was prepared to sign it and I am now in receipt of this wonderful benefit. I haven’t yet applied for the Blue Badge, but I will as I want to have it on the days when I need it (which thankfully aren’t yet!). So don’t give up.
All the best, Sarah x

Hi, me too. My first oncologist was initially all “absolutely not” so I asked my GP to fill in the form and within a week I had the full DLA amount (I see it as recouping some of my taxes, that I won’t be claiming in pension payments!). Blue badge is a lifesaver too. Pursue!

Chris23 and Francescap29, I’m so pleased that your GP’s did this for you. Don’t forget that once in receipt of DLA (higher rate), you can apply for other things. Blue badge, Motorbility Car, Cinema Card (cheap cinema tickets), and Council Tax reduction. The latter will require you to show that there is a room set aside purely for your use, but if successful it wll put your property into the lower council tax band. Also if you have been receiving Employment Support Allowance, they should put you in the support group, so that you don’t have to keep providing medical certificates, or make yourself available for work.

Hi ladies,
I would also like to add that you can get help with your electricity/heating bill during the winter months if you are in receipt of DLA you will need to register for it and its usually paid directly to your electricity company by the end of March heres a link with all the information (please read the whole page) http://www.direct.gov.uk/en/Pensionsandretirementplanning/Benefits/BenefitsInRetirement/DG\_198331.
As far as living for 6 months is concerned then why is the DLA awarded for a 3 year period? I mean if they think all of us on DLA are only going to live for 6 months then why is it awarded for 3 years, the reason is no one knows how long any of us have got on this planet. The DLA is a complete contradiction, my own application for this was a complete nightmare eventually my GP filled in the DS1500 and I received the benefit straight away, please dont get me wrong, I am ever so grateful to be able to receive such a benefit (like francescap29 said recouping some of my taxes, that I won’t be claiming in pension payments)
Hope everyone is keeping well, I don’t post much on the forum anymore because it just doesn’t seem to work properly sometimes it will let me post sometimes it wont and I just get so frustrated with it.
Love and light to you all
sarahlouise xx

I agree with the other ladies here, I worked full time from the age of 16 to 52, with 3 months off for maternity leave,I have now taken ill health retirement from the NHS and the DLA makes a difference to how I can live, I have been told that I will not be around to claim my OAP so I feel justified in accepting the extra money.