The new site and living with secondaries

Don’t know whether anyone feels strongly about this but I can’t help thinking its rather interesting that while all the other forums have subsections ‘living with secondaries’ just stands on its own and I wonder whether there should be some sub headings here too. I think at the very least there should be a sub heading called something like: How do I know if I have secondaries? I also wonder about sub headings for bone, liver, brain,lungs. And a personal thing…a sub heading for incurable regional recurrences…now quite a number of us who fit in this category but according to BCC literature we don’t ‘really’ have secondaries and can be cured…if only…


Yes Jane, I also feel there’s too much now under the generic “secondaries” heading, and think that installing some sub-headings would help us make better sense and use of the new forums. Can I also suggest a couple of headings: support groups & get-togethers; drugs/treatments trials; supporting our family & friends. I’m sure we’ll think of a few more.
Marilyn x

Yes I agree with both of you.

I noticed this the other day - why are we the only part of the website that doesn’t merit sub headings?

I think that your suggestions are good - we should keep to about 5.

Good thinking Jane, I totally agree - we look like a bit of a sad minority with just the one heading. I think Marilyn’s suggestions are great and I also think there could be room for separate bone/liver/lungs/brain/regional recurrences too.

Lesley x

I’m glad I wasn’t the only one left wondering why ‘living with secondary breast cancer’ only had one big section and wasn’t sub-divided. Just adds to the ‘cinderella’ label someone came up with. I think there should be sections although I’m not sure about separating specific sites for secondariess as often we have secondaries in more than 1 place but otherwise agree with the sub categories suggested. It took me ages last night to find the thread about the Bristol meet so would appreciate sub-sections like

incurable regional occurences
meetings/bcc events
specific secondaries sites
children and secondary bc
somewhere to write about the emotional impact of secondary bc or somewhere to rant/cry/celebrate

We don’t want too many sections but as it is so active now (very sad that in this age, there are so many of us with secondaries)it would make life easier to navigate around if broken up into sub-sections

Really hope live chat happens - i do really need that each week or more frequently

Oops, I’ve just written long rant on web feedback about all these categories being divisive and how I’m thankful that secondaries hasn’t been sub-divided!

I think I’m just finding the appearance of all these new sub-sections really alienating (35 now instead of 19), especially in the absence of the Latest Discusions where you could get an aerial view of all the posts in the different forums. I find the new navigation and page layout really laborious and don’t want to enter into 35 separate rooms to hunt for threads of interest, or which I may contribute to. I can’t get to grips with bcpals for that very reason. Despite the odd ructions, I feel that the old BCC format was more inclusive of everyone and more intimate.


Oh I’m so sick of this new site now! It’s so annoying having to scroll through all the categories to find what I’m looking for.
I’m seriously thinking of not coming on here anymore!

I agree, needs subheadings, and as for us incurable regionals a heading of our own would be greatly appreciated by me Jane.


Well I’ve said this somewhere before - can’t think where, but I do think realistically we should have something on the secondaries site , where people can input and gain info on wills, death, dying funerals, and all things pertaining to the final part of our illness. Of course I don’t want to scare anybody, but on the other hand I would like to be better prepared and informed.

I think a ranting section would be good too.

Other than that I don’t want too many other sections either, because it’s taking me an age to find them too.

Allicat don’t leave us…though I understand your frustration!
Funny I noticed a few days ago we only had ‘living with secondaries’…and that was it. We do stand out a bit from everyone else and their many sub headings. When I checked the other day some forums are hardly used at all. Think it’s all gone a bit OTT with the number of forums but we don’t even have a chemo/hormonal forum. I also thought we were going to have a private forum? I thought this was supposed to be a real possibility? I realise not everyone wants a private area but sometimes, often, I hold back here…the www just seems too open at times. It’s difficult to discuss family matters here, the impact secondary cancer has on family, friends, partners. We are so much more than a group of women with secondaries, everyone is different, mets wise, age wise, treatment wise. I hope BCC replies. Belinda…x

Kate and Celeste I love the idea of a ranting forum!

Hi Jane,
am struggling with new web arrangements of categories and yes … there are so many subsections of secondaries, I just look for lung mets… which unusually is all I have after 15 years but if the threads are non specific you could miss an important link can we break this down a bit more on this fancy and active website???

Hi all

Thanks for your comments, we replicated the category structure of the previous forums where “Secondary breast cancer” was one category and migrated all the posts. We couldn’t create sub-categories with no posts. So of course we can create sub-forums if you would prefer this and if you wish to discuss the sub forums and get back to us we can create them for you.

Also, just to add that there will be private forums in the near future once most other issues have been fixed.

Best wishes

Thanks Lucy

I don’t know how we’re going to agree which sections though, and some people don’t want it divided at all.

Can I kick off by suggesting a section called:

Have I got secondary breast cancer?

This would be a place for people who are worried about symptoms or just want information to quickly find a place to post.


Jane that is an excellent suggestion.It would be a sort of halfway house for those with worrying symptoms although the only advice could be ‘go to your doctor if it is still there in 2 weeks’.

There is already one in ‘Worried’ or am I being gormlas again?

I can answer my own question. Gosh I am so dopey… sorry I missed the most important word secondaries.

Like Jane said I don’t know how we are going to agree and we don’t want too many subheadings or it will be just as confusing as having none.
Quickly thinking i would say subheadings like

  • have i got secondary cancer - although not sure how helpful that will be as we already say to people about the 2 week rule of thumb and go and see your oncologist!!!
  • to arrange meet ups
  • emotional issues (so we can rant and rave or cry and celebrate and have some debates like we’ve been having recently)
  • physical issues (think it would be too complicated to have individual sites as sub forums as many people have secondaries in more than 1 place - think that’s probably contraversial and you won’t agree with me over that!!!)
  • living with children when have secondary diagnosis
  • treatments and trials
  • fun - like the gormless thread
    Think I would stop at about 6 as too long winded but expect you all have differing opinions which is great.Can think of other categories like under 40 and over 40 or some other age groups but not sure what that would achieve but might be helpful.
    probably come back and re-edit this
    have come back already!!! Will be pleased if we can have a private forum as that is often what I use live chat for so that I express myself freely without the worry of my family and friends reading my darkest thoughts and worries

Do we need a thread/subforum about bisphosphonate drugs for bones (“bishbosh”)? Or does this belong in Treatment rather than Secondaries?

I think;

Living with secondaries which has spread to your:


Should be the main sub-categories

I know that many people have more than one type of spread but there is often one area which is more dominant or troublesome. I know this doesn’t cover lymph nodes etc. but these are generally recognised as the main areas to which bc spreads and obviously we can be flexible here.

‘Other issues’
with a sticky type note to say that everything else goes here

I really think ‘Have I got…’ shouldn’t be a category and those with secondary fears should post in ‘worried’ or see their doctor/hospital. I don’t mean to sound harsh but we cannot really be of real help in these situations and I don’t think this subject merits a whole category. Obviously we wish to be supportive where we can but we can’t honestly or usefully answer many of these queries.

Many of the other issues should really be addressed in other forums like ‘employment and financial issues’ in ‘Living with breast cancer’.

Perhaps ‘Talk to others in a similar situation’ should have a sub category for secondary cancer or alternatively ‘Meet with others in a similar situation’ could be a sub category within the secondary bc forum.

A private forum will be fantastic and I look forward to it, which - as often said before - doesn’t mean I will stop posting publicly here.

Sub-heads are a good idea but I think they can only be very, very general.