Survivorship survey

Public Archive
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BCC - Questionnaire still doesn’t work unless I answer question 8 which doesn’t apply to me so I haven’t answered the questionnaire. Please note that your results are going to be messed up because you are going to end up with those with a primary diagnosis answering a question designed for those with a secondary diagnosis. You need to fix the problem now. Moral: always try a questionnaire out before putting it out on the web site for everyone else to fill in.

Question for BCC - will be results of the questionnaire influence the decisions to be made on terminology or not? Has the decision on terminology already been taken? I think that this needs to be made clear.

Comment on terminology - the issue is we that need terminology that enables organisations such as BCC to fundraise and highlight issues without giving a message of certain doom or patronising (or labelling) women who have had a diagnosis of breast cancer. I dislike the term ‘survivor’ but if it helps to raise the profile of the disease in a way that is positive, increases fund-raising and political clout and give hope to others then maybe I can just about survive the use of it. In other words I shall grit my teeth and be a ‘survivor survivor’.

Best wishes,

SuperSue

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No I’m sure the results of this ‘survey’ won’t affect the use of the term ‘survivorship’ at all. It is clearly a term which has been used for a while by MacMillan and will appear in the Cancer strategy.

I’ve now bought a book I saw mentioned on the web by Samantha King. Called Pink Ribbons Inc: Breast Cancer and the Politics of Philanthropy. Much food for thought about the ‘market driven industry of survivorship’. I turned straight to the chapter entitled: The Culture of Survivorship and the Tyranny of Cheerfulness’ Greast relief after the pink fluff happy clappy October stuff.

Jane

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Wow, that sounds like an interesting book Jane. Come back and let us know what you think of it. I think that might be one for my Christmas list.

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Hi everyone

Vicky has asked me to post this. (This thread will stay open until Thursday)

best wishes

Jane

Moderator

Breast Cancer Care

Hello everyone.

Thank you for taking part in the survivorship survey, it is great to see so many people involved. Breast Cancer Care really values the time you have taken to complete the survey, and is grateful for the views expressed which will help shape our response to the Cancer Reform Strategy.

Please accept my apologies for the problems that some of you have been experiencing with regards to completing the survey - our new media team has corrected this, and we are aware that we will need to take this into account when looking at the results in conjunction with the focus groups held last week and the week before.

Please also accept my apologies for any distress caused by filling in the questionnaire, it is tricky as we need to highlight the differences between the feelings of those with a secondary diagnosis to those with a primary diagnosis, but we understand that this question in a ‘black and white’ format may cause anxiety, and we have taken that on board for the future. If anyone would like to talk to anyone about these issues, please contact our free and confidential helpline on 0808 800 6000.

The terms used on the web poll are the ones that were generated by the focus groups, and we specifically wanted to see if they were agreed with by a larger number of those affected by breast cancer. If you feel these terms are inappropriate, please feel free to express this and any other views in the last comments box - we want to hear from you. We will also be taking views expressed in this discussion thread, and others, to gain as clear a picture as possible on what those affected by breast cancer think of the term survivorship.

Re: the question from SuperSue on whether the results of the questionnaire influence the decisions to be made on terminology or not, and whether the decision on terminology has already been taken. The decision on terminology has not already been taken - it is likely that the Cancer Reform Strategy with have a section on ‘survivorship’ (and it has not been decided that this term will definitely be used, but it is likely). We are conducting this research in order to form our own position on the Cancer Reform Strategy when it is published, and we will be using the results to compile our response on Dec 4th. If the results show that some of our own terminology and ways of working need to be changed, then we will look into that also. I hope this answers your question - if you require more information, please do not hesitate to get in touch.

For those that want to read more around this issue, the book ‘Pink Ribbon Inc: Breast Cancer and the Politics of Philanthropy’ by Samantha King mentioned by Jane RA is a fascinating read that explores this subject in more depth.

If you have any questions, or would like to contact Breast Cancer Care directly with regards to this discussion thread, please contact Vicky Lane on or call on 0845 092 0800.

Thank you once again

Vicky

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Just to add my bit…
I agree with others that the term ‘survivorship’ somehow suggests that we have some control over our outcomes and those that survive are to be applauded (and those that don’t are somehow weak??!). I prefer ‘Living with primary breast cancer’ and ‘living with secondary breast cancer’ although they are long-winded.
I’m still not absolutely clear who is announcing the cancer reform strategy? Whose strategy is it? Who is announcing what on the 4th?? Sorry if I’m being dense
Jacquie

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jacksy ya not dense at all, appreciate people who ask questions i wanted to ask. Some of these discussions go above my head. I wanted to ask if the book mentioned in above posts is easy to read.
Sometimes i get a bit upset by peoples attitudes towards BCC to me they are only tryin to support us and help us, It is impossible to get everything ‘right’ and ‘please’ everyone. At least we have a say on things.

Keep up the good work.
Ruth

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I don’t think anyone felt distressed about filling in the questionairre. There was simply a problem that some of us felt we didn’t like either of the terms used in one of the questions, but we were unable to leave the question unanswered cause technically we weren’t then able to complete the questionairre.

I think the government is announcing the Cancer Reform Strategy…or it might be the bloke who has sometimes been called the ‘Cancer Tsar’: Mike Richards.

The book isn’t excatly bedtime reading and is quite academic Samantha King is associate professor of heath education and women’s studies at Queen’s Univeristy in Kingston, Ontario

Jane

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Like Jane, I didn’t detect any signs of emotional stress caused by the topic - just frustration with design flaws in the questionnaire.

Choosing which of two awful terms one found the least offensive was one problem affecting all of us. The question that was really aimed at those with secondaries but couldn’t be skipped was the other.

I think most people decided to select something but then say how they really felt in the comments box. So, for those two questions, it may be necessary to give more attention to the comments than the answers.

I’m amazed how much agreement there has been among us about the terminology. I am also grateful for the empathy shown by those who don’t have secondaries (from the comments I’ve seen here and heard elsewhere), in the way they answered the question aimed at those of us with secondaries.

BCC, please don’t feel it is necessary to be perpetually worrying that some people MIGHT get upset. Difficult questions do need to be asked sometimes. Those who find it difficult to cope with thoughts of mortality, can probably spot the nature of a thread or questionnaire quite quickly and then avoid it?

Thanks again for the opportunity to comment. Pleased to hear that there was a good response.

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I’ve filled in the survey but I’m still not convinced my survey was recorded (no sign of a “thank you for filling in the survey” message). So, in short this is what I’ve said.

Terminology is difficult and you can’t please everyone. I don’t particularly like the term “survivor” because I don’t want to be labelled by a disease but I think that it is the best one that we’ve got. Any term chosen has to do several things. It has to be clear in meaning to the general public and memorable so that it can be used effectively in fundraising and awareness campaigns. It also has to have some sort of positive ring to it to offset the dread with which cancer is often viewed and the associated avoidance of cancer issues. As far as women who have had a diagnosis of breast cancer are concerned I think that “survivorship” is okay for some but not for others and this has been reflected in the discussion in the BCC chat rooms. I am concerned about having different terms for women with primary and secondary breast cancer. I don’t think that the division is always clear cut and I feel that by the very fact of labelling these two groups of women differently the underlying message might be that one group is going to survive and the other group is doomed. So to conclude I suggest “survivorship” and “survivor” for fundraising and awareness campaigns. The rest of the time why not simply use the term “post-diagnosis” to cover all women who have had a diagnosis of breast cancer sometime in their lives.

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Hi all

Vicky has asked me to post this

best wishes

Jane

Moderator

Hello everyone
I just wanted to get in touch to answer some of the questions that have been raised regarding the work on survivorship. The Cancer Reform Strategy is indeed due to be announced by Professor Mike Richards (also known as ‘Cancer Tsar’), the National Cancer Director and it aims to build on the 2000 NHS Cancer Plan and will set out a strategy for cancer services for the next five to ten years. Working groups of experts have been set up to develop specific areas of the new strategy including a) including the experience of cancer patients b) achieving value for money for the NHS and taxpayer c) making sure the public are more aware of the risk factors and symptoms of cancer.

Thank you so much for all your comments, I am feeding them into the evaluation report – it is incredibly useful to have this kind of discussion and we are very grateful for the high level of response and interest this topic has generated.

Kind regards

Vicky