Secondary BC Awareness Day.BCC please pull your socks up

Dear BCC, those of us with secondary BC are really being made to suffer at the moment. You will see from one thread on this forum that a lady who was previously claiming DLA under DS1500 rules has just had this taken away from her (despite being supported by medics). You will also see from threads on this forum that many people have benefited from a drug called Everolimus, but now NICE had said this drug should no longer be funded. Similarly, the emergency drugs fund will come to an end in 2014, and many people will no longer have access to life saving/prolonging drugs.

With respect therefore, the body image theme is actually quite insulting, when many of us are wondering how we will survive if our benefits/drugs/treatments are removed.
Would BCC please advise how they’re going to incorporate these issues into the SBCAD? Also, going forward, what campaign strategies do BCC have within Spotlight, to to tackle these hard political issues?

Just bumping so the post appears

Hi Lemon Grove
I totally agree with everything you say about secondary people being given so much grief. We have to fight to be noticed once we are dx.
Please BCC listen to those who are in the know to the brave people who are fighting this awful illness. I repeat what Lemon grove has said body image day is an insult.
Please use your power and our money more wisely. We may be ill and sometimes frail but that does not mean that we should stand for the second class treatment that our government and quite frankly your organisation is dishing out.

I agree that the body image thing is really not a priority.
I am scared witless that my benefit might be taken away when it comes up for renewal. As I understand it, the original DS1500 was given almost automatically because of the stage 4 cancer diagnosis. I have spoken to Macmillan about it and this is their line. But I am much more mobile now than when it was issued, which was immediately after having a hip replacement. Will this be used as an excuse to remove my benefit, even though the diagnosis still stands, with the disease itself having progressed despite the hip replacement functioning well.
We really need some clarity as to the rules and conditions that apply. Then we know which corner we need to fight, if necessary.
I am alarmed about the drugs issue, as well. Again, we need to have some clarity about what we can expect so that we can be properly informed patients.
I would think that those who donate to BCC would regard it as a responsibility for the organisation to provide up to date information about seconearly cancer issues and support these patients rather than worry about ‘body image’, a fiddle tune played as Rome burns.

Couldn’t agree more. I have gone from being quite a passive person to constantly having to fight for one thing or another. Benefits, treatment and discrimination at work to name a few.

I agree with the above comments, maybe assertiveness training as you will definitely need to be assertive when diagnosed with secondary bc, it seems as though we are pushed to the bottom of the pile! , I was diagnosed in oct 2012 with secondaries to lung and breast recurrance, on chemo now having a break for a few months, but I had to search out support with finances and with work issues , no allocated breast nurse etc Luckily I have a few supportive friends who have been brilliant but medical /financiial support is lacking

Thank you Lemongrove for puting into words what I am unable to do at the moment.
I feelt that we have no support or advice from BCC regarding the changes in the DLA rules and the reviews we we need to deal with. I am really scared and it doesn’t help with my mood when I am worrying if I will still receive my DLA when it is reviewed. I do not even know WHEN it will be reviewed. I have had bone mets and DLA from 2000 approx. Things have not improved and it worries me when I see friends on here who have been denied DLA or had a reduction. AS I receive the higher rate of DLA I also am entitled to a Motobility car if I use the mobility part of my allowance towards a car. This is a lifeline for me. I would die without the freedom this enables me to have. The car gets me to hospital and out an about as I am too frail to use the bus service.
I have received DLA for a long time and things have got worse for me. BUT what I m trying to put across is the mental auquish it causes when we do not know what to expect when our case is reviewed and support and advice form BCC would be much appreciated. Body image is the last thing on my mind ( I am bald and skinny and have had a tough 2 years, including hip replacement and 18 weeks of chemo).
I would love to feelt hat I had BCC supporting me at this difficult time when these reviews are being made. I have read about so many ladies who have been refused this benefit. BCC please help us in out hour of need and forget about body image. Val

Well said Val. You have not lost your way with words.
I feel the same. Without my mobility component I could not get to my frequent hospital appointments ( as it is I still have to pay extortionate parking) and I could not really get out and about anywhere.I definite;y could not get to work.
Without my care component I could not manage to work at all. We could not cope with this financially as a family. I am managing to work part time. If lost, I would definitely have to claim ESA ( which at present I do not).
So my DLa enables me to carry on working ( and contributing) which I want to for as long as I am physically able.
I also feel very strongly that DLA in some way compensates for lack of a future State Pension.
My job can involve benefits and I can represent people at appeals.
There has definitely been to a sea change over the last year. Decision Makers are increasingly questioning DS1500’s as being correct, even when written by a Specialist.
I would greatly appreciate some guidance from BCC on all of this. Body image is irrelevant to me. I just want to live and be there for my family for as long as I can.

I am concerned that there doesn’t seem to be any information about the realities of economic life for people with a diagnosis of secondaries. Various people post on these forums in various situations. Some manage to get back to work after diagnosis. Others find they cannot work for a while but eventually after treatment find they want to get a job. Others are too unwell to ever go back to work. For everyone, there is change to deal with and these changes have an impact on their financial circumstances.
I would be really interested to know what hurdles people face in their various situations. Economic situations don’t always depend upon how disabled an individual is. Sometimes it’s about how disabled, in their knowledge and their attitudes, prospective (and existing) employers can be. And despite anti discrimination legislation it can be very difficult to prove that difficulties in employment are the result of discrimination.
I had the misfortune to be on a temporary contract when I became ill and was diagnosed with secondaries. My contract finished and for some time I didn’t even attempt to get another job (I couldn’t walk unaided). Now I want a part time job at a lower level, as I do not feel able to resume teaching. I am looking for part time teaching assistant jobs. Despite my experience and qualifications (which include TA qualifications) I have not even been short-listed. I do have to ask myself why. I always struggle with how much to divulge on applications. Do I tell why I have not been working and why i want a less demanding job? You’re damned if you do or if you don’t. Meanwhile, although I could work I am being excluded because of my health circumstances. If DLA is taken away, what am I going to do? Having a terminal diagnosis, horrific in its own right, has all sorts of knock on effects which need to be understood by the public and by government.
So BCC, please wake up and find out what issues really cause difficulties for people with secondaries! Then publicise them and shame the government into paying attention.

Well Said Julie and Thumbie…I fear being stuck between a rock and a hard place.
I also feel that the ladies who have posted on this thread have contributed to the BCC Forums quite a lot and it would be good to feel that we were being supported when we have our benefits reviewed. Not enough information and feeling like we are lost at sea without a paddle!

I agree with all that’s been said above and cannot add anything…the wise words from everyone’s posts have said it all. I look forward to reading BCC’s reply.

Well said Val, and everyone else. Here’s hoping BCC don’t keep us waiting too long for a reply.

I would like to ask BCC how much they canvas those with secondary breast cancer seeking their points of view and problems they experience with life in general. I think they would find some patterns which arise from public perceptions of secondary cancer - often misconceptions - which exacerbate problems for patients. It would be useful to survey the public as well to find out how much is generally known about secondary breast cancer. My guess is that little is known about what it means to have this disease, unless you know someone with it. Yes, there is information on the BCC and the Macmillan site, but only people affected are going to access it. A high profile secondary awareness day could be a form of outreach to the ignorant.

Good Idea Thumbie
I have yet to tell my dx to many people because of the I first reactions I had. The pink campaign seems to have had the effect that if you are dx secondary it must be your own fault. Questions such has when did you last have your mammogram were fired rapidly . Although I did not like it I can understand them because of the real truth about this dx is not out there.
I was just has ignorant the hardest part for me was getting over a straight secondary dx . I like them assumed it must be my own fault. I know now because of wonderful information on these boards and my own research tht this is an awful secret kept hidden well by the pink money machine.

At first I did not have the energy but my old fighting self is back. I will keep saying it BCC you are not representing the large proportion of women with this dx and those who will be dx in the future.

Yes, Mara, people need to know that you don’t get secondary cancer (or primary for that matter) by beng lazy about self-examination or going for mammograms. Those procedures detect cancer that is already there. And as soon as you have a primary cancer you are at risk of secondaries, however early it is caught. Awareness of this is scary but accurate! I think people know this, but with the emphasis on early detection leading to a good chance of cure they forget it. I can understand BCC wanting to be positive and upbeat, nobody likes doom and gloom. But a little realism as regards secondaries on an awareness day would not go amiss.

In my case these prcocedures failed to detect cancer that was already there. Given the all clear in April 2012 (even though I presented once again with a lump). Diagnosed six months later with secondary ILC. I am still struggling to get through to oncology that ILC is extremely proficient at hiding. Allied to that is once diagnosed with cysts hard to convince anyone that the presence of cysts does not then mean that cancer is not there also. Can’t find it to post at the moment but came accross a paper published by Scottish Government blaming the poor survival rates in this country on us for ‘presenting late’.

Seems many more of us (me too) are being diagnosed stage 4 from the very beginning…bumping this to the top again.

I agree wth all that has been said by Lesley, Val and others so don’t wont to repeat what already been said. was am the lady who has just had my DLA renewal turned down. I am also very angry about the shocking news from NICE that they will no longer fund everolimus drug that is working for so many. These and other issues are what matter first most to me and other secondary ladies not body image.
Marina x


BCC please would you reply to the question I asked at the beginning of this thread?