I don't feel I can add anything extra but to reinforce that
- profiles are visible to registered users
- there is some way of knowing that someone left you a PM. I feel so discourteous to discover 3 - 5 days later someone PM'd me on a thread but then I'd forgotten which thread I'd posted on so never replied. An email link or an area that individuals can access to see if have any PMs would be useful.
- think there should be some sort of opt in for a private secondary forum so that us with seondaries feel freer to post our actual feelings and needs but I also think that it can be helpful for women with primaries to have insight into life with secondaries but frequently don't want to post my fears incase someone just newly diagnosed reads it.
- I find evenings very hard to join live chat in the evening and would prefer a day time slot.
- secondary live chat needs to be monitored more

I hope these improvements this time will make it more user friendly and you don't have the same technical issues you had last time
Kate

I am sorry you feel like that Jane. For my part, you would be more than welcome to join any form of secondary communication whether it be cyber or real. It is a complicated area, even if you have secondaries. Some may have a few bony hotspots and some may have (like me!) extensive organ involvement. There is no level playing field. We can stretch the boundaries when need be.

Jenny

Hi Jane

You know that I second that as well.

C

I like your suggestion, Kate. I know many people do not post on the secondary forum because they do not want the world and their mother reading but it is good to be able to share difficult topics with others in a similar position, who are often the only ones who understand at all.

Jenny

There's an easy answer on recurrences and much more complex one. The easy answer is that a local rceurrence is one which occurs in the breast area; say after a WLE, and necessitates further surgey; a regional recurrence is a spead to the chest wall or the lymph nodes above and below the collar bone, or the internal mammary nodes; a seceondary recurrence is one which spreads to a distant organ, usually,in the case of breast cancer to the bones, lungs, liver or brain (but possible to other areas..abdominal lymph nodes, or eyes, or skin for example.) Secondaries are also known as distant metasteses or Stage 4 disease. Secondaries are not curable.

There's a more difficult answer too, because loco/regional recurrences are diverse and complicated. Some local recurrences do not increase the risk of distant disease, while regional recurrences are considered more serious and often increase the risk of distant mets. In some cases regional recurrences are not considered curable. Technically regional recurrences are usually classified as stage 3c rather than stage 4, though the treatment opritions are the same as for distant mets.

I have an incurable regional recurrence. Before I got diagnosed a year ago I though that a regional recurrence was potentially curable, and so it was shock to discover that a recurrence like mine (in several different places, not amenable to surgery or radiation) is not curable. One oncologist described me as being 'at the good end of stage 4' though my cancer has not (yet) spread to 'another part of my body'. Sometimes my type of recurrence is described as regional metasteses.

I feel myself to be in the same position as women wih distant metasteses because a) treatment is continuous and palliative rather than having an endpoint or being curative and b) being incurable I am faced with the knowledge of a premature death from cancer and the uncertainty of never knowing how soon that will happen. I know that I am lucky not to so far have distant spread (though with a CT scan due I say this cautiously), but also unlucky in that I'm triple negative and have nearly exhausted all tretament options and my tumours are probably barely stable after a year of 4 different kinds of chemotherapy.

I think Jenny's right in saying there is no level playing field. Women with secondaries are not a homogenous group: many factors influence the course of metastatic disease including the site of metasteses, the treatment options available, the response to tretament. Some women have one site of disease, some have many, some die very quickly, some live a long time...and many factors influence each of these outcomes.

Rigid stageing categories are not necessarily helpful when it comes to support issues. On US sites I think there is far more recognition of the grey area of recurrences and also more understanding of the difference between early stage breast cancer and the implications of stage 3 and locally advanced breast cancer.

I am fairly knowledgable about breast cancer and also fairly confident in my knowledge. I have always supported the rights of people who share something in common to do so without others not in their group; but now I find myself in a very odd and isolated position. My heart beats rapidly when I see discussions about kicking people out of live secondary chat if they don't have secondaries. Fortunately live chat isn't a format I want to use anyway, but I would dissolve in tears at my keyboard if anyone said that to me....and if I feel like that how would a newly diagnosed woman with the same kind of recurrence feel? This isn't anyone's fault..but I do think it is one of the unintended consquences of the focus charities have rightly put recently on promoting the particular needs of women with secondary breast cancer. There is virtually no information available from BCC on regional recurrences: that which there is is not accurate nor comprehensive.

So now I'm not sure what I think about private forums. If there's a case for women with secondaries having a private forum then there's a case for other groups too...younger women, men etc.

I hold back from talking about really private stuff because this is the internet not because I am worried about upsetting someone who is newly diagnosed. The newly diagnosed are no more a homogenous group than those with secondaries are.

I recently sent a paper to several people at BCC about the issue of regional recurrences. Haven't had much response yet...though thanks to the one person who did. This thread is about BCC's new website and what I want is some accurate information about regional recurrences which doesn't inadvertantly exclude from support those (few) of us who find ourselves in a slightly different part of the same leaky boat.


Jane

And before anyone says: 'Ah, but you can't die of a regioanl recurrence'..well yes you can if it gets out of control and treatments all fail....unusual but it happens..

Goodness Jane, your knowledgable girl. Can i book you to come to my next appt to ask the 'right' questions haha!

Have no probs with BCC editoring or viewing my posts they are very professional and i for one have never had any probs with them. Only once have they removed something i have posted and as i post alot thats great. I agreed with them too.

Rx

Hi all,

Sorry it’s been a while since my last update. The past few months have been very busy and I didn’t want to post until I had good news.

During our initial research, you told us that:

• The navigation was very difficult to follow and information was buried and often too hard to find
• The homepage was too cluttered and too focused on fundraising messages rather than help for people who had been diagnosed
• You wanted tailored information to reflect where you were at on the ‘breast cancer journey’, rather than being overwhelmed with content
• The interactive services (i.e. forums and live chat) were the key areas for support and you felt should play a much more prominent role

We have worked with a group of our users, internal teams here at Breast Cancer Care and an external web agency to define what the new website will look like. The navigation will be based on the “breast cancer journey” which came out very strongly from our research as the way in which people wanted to access information and support services.

The forums will be redesigned; we have decided to use the leading (free) software phpBB, which many of you may be familiar with from using other online communities.

This means that you will have lots more tools to use (private messaging, email notification, better searches etc.). We will transfer all the content of the existing forums and the user accounts to the new system. This also means the forums will be more robust and will cope better with the increase of posts (we are now getting close to 20,000 posts per month; 3 times more than last year).

Our community (of over 13,000 registered users) will become the heart of the new website and you will be able to create your own profile and choose which information you want to display (only to other registered users), add contacts you’ve made on the site to see their contributions and also ‘bookmark’ pages and discussion threads that are relevant to you.

We had initially aimed to add a blogging facility but this would have pushed our budget over the limit so we will give you tips on how to create a free blog and you will have the possibility to make your blog entries appear on your profile, using what’s known as an ‘RSS feed’.

Many information and news pages will allow comments from users, similar to news websites such as the BBC. I am currently working with the fundraising team to make sure that although the site remains primarily a place for support, it still raises the funds the charity needs to exist.

And finally, this is what it will look like (note that this is just a design, the words and pictures are all ‘dummy’ content at this stage).



We are really excited and impatient to launch but we are only half way there: still a lot of technical work to do…!

Thanks,
Bertie

This looks fab, I am sure it will take us a while to get used to it but great to know some of what has been asked for has been used to design this website. when is it changing?

Thanks for all the hard work you have put in Bertie.

Rx

Probably a silly question ,why do my posts always have edit report post next to them? I'm beginning to get a bit paranoid.

Sorry I didn't realise I'm not that clued up with the computer, and I refuse to ask for help