Dear Breast Cancer Care
Dear Breast Cancer Care Dear Breast Cancer Care and moderator,
I am very disappointed that the organisation has not responded to my open letter in the ‘198 Women recalled at Inverclyde Royal Hospital in Scotland’ Thread posted on the 20th June.
It may be that, because I am an unmoderated user, the letter has not been noticed by a moderator and passed on to others in the organisation. If this is the case I hope that this message will alert the the moderator and the organisation to the letter’s existence and result in a speedy response.
If BCC views the discussion forums as an inappropriate place to discuss these issues then I would be grateful if the moderator would supply me with a name and address to whom I could write. I could then give feedback on any response received to the women who use this forum.
The issue of delays in diagnosis is a very serious issue and I would like to think that BCC would acknowledge its seriousness and wish to play a part in its prevention.
With best wishes,
Supersue
Press Office I agree Sue. Perhaps you should call or e-mail the press office and ask them to make a response.
Jane
Aplogies Sue Hi Sue
I am sorry you haven’t received a reply. I have asked someone to comment on this.
Best wishes
Moderator
Breast Cancer Care
Dear Breast Cancer Care and moderator,
I am extremely upset by your lack of response about the topic of 198 women recalled at Inverclyde Royal Hospital.
You have neither responded to my open letter nor furnished me with a name and address to write to.
I feel that you are not taking this situation seriously despite the press release that you have released.
I ask that you respond immediately.
Yours sincerely,
Supersue
Hi Supersue
I would firstly like to express sincere apologies on behalf of Breast Cancer Care for the delay in responding to your post.
Breast Cancer care takes very seriously the issue of delayed diagnosis and your comments have been forwarded to the relevant department within the organisation.
I will ensure that we provide you with the name and address/email address to direct your comments to during working hours tomorrow.
Kind regards
Louise
Moderator
Breast Cancer Care
Hi Sue
Our policy department has suggested I post this on the forum. I hope this helps:
'Breast Cancer Care considered it extremely important that all patients have access to high standards of breast cancer assessment and treatment throughout the UK, and that best practice guidance is adhered to.
NICE Guidance on Cancer Services (Improving Outcomes in Breast Cancer, Manual Update, National Institute of Clinical Excellence, 2002)
recommends that:
“The same standards of care should be provided for all patients with suspected breast cancer, whether they are identified by screening or referred with symptoms. The combination of clinical examination, mammography/ultrasound and image-guided core biopsy or fine needle aspiration (FNA) - known together as triple assessment - should be available for women with suspected breast cancer at a single visit.”
Guidance on early diagnosis and treatment is currently under development and the expected date of issue is January 2009.
SIGN, the Scottish Intercollegiate Guidelines Network, (NHS Quality Improvement Scotland)highlights in SIGN 84 - Management of breast cancer in women: A national clinical guideline, published in December 2005:
"Methods of assessment of a breast abnormality include clinical examination, imaging and sampling the lesion with a needle for cytological/histological assessment (fine needle aspirate cytology, FNAC, or core biopsy). These three investigations collectively comprise triple assessment.
There is evidence that triple assessment provides more accurate diagnoses than a smaller number of tests." This guidance is unchanged from SIGN 29 published in 1998.
Best wishes
Lucy
Moderator
Breast Cancer Care
Hi Lucy,
The text from the NICE and SIGN guidelines is correct. However, please do not just bombard me with information. The text above does not address the issues raised in my open letter.
Firstly, I am concerned that a number of women sending messages to the ‘Have I got breast cancer’ forum seem not to have access to the triple assessment despite presenting to a breast clinic with a lump.
Secondly, I think that this is worth investigating because such situations may be accidents waiting to happen - as can be seen from the number of recalls by Inverclyde Royal Hospital - and that you should consider reading back through the forum posts and checking how often this situation occurs.
Thirdly, I think that you should consider putting more detailed information on the Triple Assessment on this site to help prevent such incidents as that at Inverclyde Royal Hospital happening. This might actually involve empowering women by giving them details of when the triple assessment is necessary, i.e. when a woman presents with a palpable lump.
I cannot put these points any clearer than this. Please respond to my letter or if you feel that it would be inappropriate to respond on the forum then please give me a name and address to whom I can write.
Supersue
I had a mamagram in early December 06 29th December results came back saying no signs of cancer would be recalled in 3yrs went doctors in January misshapened and inflamed .Dr perscribed 3 courses antibiotics because they said no cancer. she then refered me back to breast clinic saying could not be urgent appointment because no cancer. Went clinic in april and was then diagnosed with breast cancer with secondary liver
Hi Margie,
Thank you for this comment. It certainly illustrates that not all breast cancers show up on mammograms. Was the December mammogram a routine mammogram or were you referred by the GP with a breast lump? Did you have a fine needle aspiration or core biopsy on either of your visits to the clinic?
I hope that treatment is going well.
With very best wishes,
Sue
Hi Sue
My mammogram in december was the routine national health 50 plus but two years before I was on the family
at risk I had been told I had a cyst in my breast so when it went inflamed and they said no cancer I thought the
mammogram had damaged the cyst and caused infection but in the back of my mind I knew you just try to push the thoughts away. As soon as I saw the doctor at the clinic she said in her oppinion it was cancer she sent me for an ultrasound and core biopsy .Waited two weeks for results because she wanted me to have bonescan ,chest and internal ultrasound longest two weeks ever. She said finds it very hard to believe it wasnt there in december because of the size its a grade 2. there not going to opperate Im having 4 to 6 chemo`s I can have the herceptin and they will just keep monitoring me and hope for the best
Thanks for the information Margie.
With very best wishes,
Sue
Dear Breast Cancer Care and moderator,
I will request one last time to comment on the issues raised in my open letter or, if you feel that the forum is not the proper place for discussion of this topic, to give me a name and address (or possibly an email address) so that I can contact the relevant person within the organisation.
I have raised what I consider an extremely important issue and have had no real response in the last fifteen days since I originally posted the open letter. I think it would be unhelpful to everyone on the site if I kept trying to get a response out of BBC because there are other topics that people will wish to discuss, and for many people using these forums this topic is not an issue. So, I won’t be repeating my request again.
I will end by saying that a move to check whether women have had problems receiving the Triple Assessment (where all three tests are appropriate) and place more detailed and empowering information about the Triple Assessment on the website is a simple, straightforward and inexpensive precaution and one that, in the light of recent events, may lead to preventing delays in diagnosis, potentially prolonging and saving people’s lives.
Your sincerely,
Supersue
Dear Breast Cancer Care and moderator,
I will request one last time to comment on the issues raised in my open letter or, if you feel that the forum is not the proper place for discussion of this topic, to give me a name and address (or possibly an email address) so that I can contact the relevant person within the organisation.
I have raised what I consider an extremely important issue and have had no real response in the last fifteen days since I originally posted the open letter. I think it would be unhelpful to everyone on the site if I kept trying to get a response out of BCC because there are other topics that people will wish to discuss, and for many people using these forums this topic is not an issue. So, I won’t be repeating my request again.
I will end by saying that a move to check whether women have had problems receiving the Triple Assessment (where all three tests are appropriate) and place more detailed and empowering information about the Triple Assessment on the website is a simple, straightforward and inexpensive precaution and one that, in the light of recent events, may lead to preventing delays in diagnosis, potentially prolonging and saving people’s lives.
Your sincerely,
Supersue
Hi Sue
I am posting this on behalf of Diana Jupp, the Director of Information Services for Breast Cancer Care
Best wishes
Sam
Moderator
Breast Cancer Care
Dear Sue
In reply to your open letter and subsequent comments, we share your concerns about reports of women not receiving adequate assessment of breast problems through the omission of comprehensive triple assessment. As you correctly state this is recommended in multiple guidelines and is widely considered optimum standard of practice.
We welcome your suggestion of auditing the prevalence of this problem as discussed on our forums and will ensure that this is included in our next content/issues review. This is done periodically in order to highlight important issues that inform and help to prioritise the agenda set by our Policy and Campaigns team.
Finally, we strive to ensure our information supports people to ask questions relevant to their circumstances and is in line with national guidance on optimum treatment and care. Thus I agree that the importance of triple assessment in achieving an accurate diagnosis could be made more explicit in our written and web based literature and we will take this up with our team of editors for review.
Best wishes
Diana Jupp
Director Information Services
Dear Diana,
Thank you very much for this update. I welcome your comments and am glad that you will be auditing the prevalence of women not receiving adequate assessment of breast problems due to not receiving the Triple Assessment. In addition I look forward to reading your updated Triple Assessment website information. Could you give me some idea of timescale?
With very best wishes,
Sue
P.S. If you wish to email me directly to discuss these issues further then please feel free to do so. I would be happy to have input into the audit process and the updating of the Triple Assessment information.