Breast Cancer Voices-do you want to be involved?

Hi all

This is is a message from our policy and campaigns team who are looking for your help;

I’m Emma, Involvement & Campaigns Assistant at BCC. I work with our user involvement group, Breast Cancer Voices.

We’re currently looking for more people with a diagnosis of secondary breast cancer to join the group and I thought this might be of interest to you.

Earlier this year our Spotlight on Secondary Breast Cancer campaign succeeded in gaining a commitment from the Government to pilot collection of data on the number of people diagnosed with secondary breast cancer in 2011/12, with the aim of collecting full data in England in April 2012. This was a significant step forward in improving the lives of people living with secondary breast cancer, which we couldn’t have done without the input of our Breast Cancer Voices.

We’re continuing to campaign to improve the lives of people with secondary breast cancer and need more people living with the condition to join Voices. Voices will help to support the Spotlight Campaign and to shape our second Secondary Breast Cancer Awareness Day on October 13.

If you are interested in joining Voices, or would like more information, please contact me on 0207 960 3574 or at<script type=“text/javascript”>// <![CDATA[<br>
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Specially with new problems with DLA special rules etc

Having access to a secondary breast cancer nurse would be of great use to. My nurse was a bit stunned and not really sure about the treatment or anything with regards to secondary cancer and the treatment and side effects etc.

will email for info


Will email for info


have e-mailed for info - nothing yet

Have e-mailed and await to hear from you.


Have emailed and look forward to hearing from you

I think I responded a couple of months ago, I’d still like to be involved

Only just looked at this post but would like to be involved if I can be of any help. I would like to see more information out there on symptoms and treatment options for secondaries from different breast cancers.

hi would love to be apart of this josie1 xx

Any more news on this??

I would definitley be interested in this, but just wonder what BCC can do to tackle specific issues, because as a charity, they are prevented from criticising/trying to change policy.
From my perspective the three major issues of concern are:
(1) The funding of stereotactic radiotherapy (currently only 28 out of 150 PCT’s fund it, despite the NRIG saying that it could save 3000 lives per year if funded).
(2) The recent decision by NICE that Fulvestrant should no longer be funded (this means those whose endocrine therapy has failed will have no other alternative, other than chemo).
(3) DLA. Some people who have been granted DLA under DS1500 rules are finding that when they are reassessed at three years, they are losing their entitlement - on the grounds that as they have already lived three years, they are unlikely to die within six months.

It would be very helpful if BCC could advise if these are issues they are willing to address.

Hello. I have recently been diagnosed with secondary breast cancer in my stomach & spine, waiting to hear if in all bones & recent symptoms may indicate it maybe is going to my brain. I was diagnosed originally in Dec 2004 with a very aggressive breast cancer but when all lymphs removed, they were cancerous too, so treatment was a whirlwind of surgery, 9 month’s chemo & 6 weeks daily radium.
I’ve enjoyed life since as much as I can, side effects of the intense treatment has resulted in me being diagnosed with additional problems,osteoarthritis, on top of osteoporosis, asthma & pain from a failed hip replacement & corrective surgery on my shoulders after alleged negligence in the operating theatre during that hip operation. That was worse than the cancer & treatment, to be honest!
Anyway, I decided that this time, because my treatment plan has afforded me a bit more time before I feel totally “off”, I would try to raise awareness & raise some funds for Cancer Research.

I announced that I would have my head shaved in my local pub, The Shroppie Fly, at Audlem, Nr Nantwich, Cheshire, on Friday 23 December…yes, it is going to happen, along with 6 others!

So, hoping to raise as much as we can…at least I will believe that I have ‘left my mark’ this time!

Sorry if I’m on the “wrong forum” section…but I haven’t been able to find anyone on this forum who’s Breast Cancer has spread to the stomach yet!

Thank You. Chrissie.

P.S. My husband Mike cares for me now, having given his job & business up to do this over a year ago, but we don’t receive any benefits or care allowances at all from DWP.

Hi Chrissie
So sorry to hear your diagnosis, I have mets in my bones and was diagnosed in Sept. I was advised to apply immediately for Attendance Allowance( that’s if you are over 65 or Disability Living Allowance if under 65.Also for a Disabled Blue parking badge. A McMillan worker helped fill in the forms and my G.P. signed them and as a result I was awarded A.A. and the Blue badge. Please contact McMillan and see if they can advise you. i certainly sounds as if you more than qualify. Also there may be a carer’s allowance for your husband.
Thinking about you
Rosie aka Trash xx

Hi Chrissie,

So sorry to hear your dx and all your other medical problems must be very difficult to deal with.

As Trash say you should be able to get DLA or AA because of your condition and Mike should be able to get a carer’s allowance for loooking after you. None of these bemefits are means tested. I think it woulf be a good idea to get yourself referred to the Macmillan nurse they are so helpful and full of relevant information. They helped you fill in forms and liaise with your medical team.
I go to the hospice myself to have aromatherapy and Reki. It’s such a treat and really help me relax. Is that something you may want to think about.
I also see a pain consultant there who has helped me so much and its not all bout end of life it helps you deal with coping with the awful ill.
The secondary thread is a great place to go and talk to other ladies in the same situation. I’vve meet some wonderful people who have been so supportive and generous with their time. I so glad I found this site.
Take care and I hope this has been of some use to you.
Chris xx

Hi Everyone.

My twin sister was diagnosed in 2010 with SBC that had spread to her bones. She’s had a single mastectomy, Chemo, followed by radio therapy. Her latest scan showed it hadn’t spread anywhere else and is, at present stable. I have my off days and find it difficult at times to cope, especially when I see her down and in pain. But this forum keeps me going, knowing there’s people out there suffering with this cruel disease that are so positive and encouraging to fellow sufferers, friends and family. Thank you all.