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The new site and living with secondaries

Jennywren
Member

Re: The new site and living with secondaries

Perhaps it should be one of the 'information' posts with a little 'i' at the top of the forum. BCC can post whatever info they feel appropriate and it doesn't preclude anyone worried from posting there nor anyone who wishes to reply from doing so.

As an example, If someone were to post 'I have an app for a bone scan to investigate secondary spread, what should I expect?' we can honestly share our experiences, but when someone states 'I have a bad back pain, have I got secondaries?', I don't feel qualified to answer and I don't think the onus should be ours to advise in this capacity. My concerns in the past have been that I have often felt almost 'obliged' to write something in reply to the 'worried' posts and all I have really been able to say on these occasions is something of the ilk 'I hope it is not secondaries but you really should see your doctor'.

Will go with the flow by and large - this is just what I think.

Jenny

dawnhc
Member

Re: The new site and living with secondaries

Perhaps the idea of having it under the Worried section could be a good idea. There must be a number of those with primary who have been anxious at some point that a symptom might have been secondaries - so they too have been through that and can help. They may not even read the secondaries forum. As Kate says it takes the burden off us to feel we ought to reply and BCC could put a sticky in it referring them phone the nurse or to their own publications.

My major concern as I said before, and Jane also said, is for those who go to their GP and are not taken seriously - it happens too many times. We can help them to ask the right questions and press for a referral to their breast unit.

dawn

dippykate
Member

Re: The new site and living with secondaries

Belinda - I agree this is the part of the forums where I find the most support and am amazed at how supportive everybody is to each other.Ok - we have our little disagreements from time to time but that is healthy to debate things and hopefully, we don't get too upset if we do disagree.
To be honest, I think the reason why I suggested putting the 'have i got secondaries' in the 'worried about' part of the forum is so people can answer that if they feel they have the time and relieve my guilt when I don't answer them!!! Like you, there are so many other posts I want to post on and don't always have time and so tend not to prioritise the 'worried ... ' part which is probably wrong of me.
I think we should go with whatever the majority think and see how it goes for 4 - 6 weeks and review cos otherwise it will never start.
More awake now and slept well in the end but really cold today despite the sunshine. Hope it's sunny wherever you are - def lifts my spirits
Katex

belinda
Member

Re: The new site and living with secondaries

My last post on this..I promise!..as I'd like to hear what others think..and at the end of the day I go with the flow. If the majority of us want a Have I got..? then that's just fine.
I think this is THE most supportive forum on the BCC site. Anyone newly diagnosed with mets is welcomed and we can offer real advice on treatments we have had ourselves and help people at a time when life is turned on it's head. But I for one had no real signs of my secondaries or bc until my hip spontaneously fractured. For some the signs are swollen nodes etc, visible signs but for many the signs are so vague or non existant..there's no one thing we can all look out for..a backache may be 'just' a backache. Over the years we've had posts from people who understandably are looking for us to say don't worry all will be well. I'd go so far as to say the people that do tend to post here about secondary worries are possibly putting off going to their Onc or GP either because they are very frightend of the outcome or they feel they may be wasting their GP/Onc's time. We can offer no assurance that they don't have secondaries. I also feel a Have I got secondaries forum may also be too much, a burden, at times, when we have more than enough to cope with on our own secondary plates. OK I'll shut up now. 🙂 Belinda...x

KatherineM
Member

Re: The new site and living with secondaries

I thought about the "do I have secondaries " thread in the division and on balance I think we should have it (although I understand everyones reservations). We already have postings from a mix of people - worried well, and those who clearly have a problem that could turn out to be secondaries. Having a sub division directs them to the right place, and we can offer support to them - in particular to those going through the horrible process of being diagnosed with secondaries,
. maybe BCC could do a sticky in the section as well.

People don't have to read it! I sometimes don't read posts here if I am feeling a bit low.

Cathyx

JaneRA
Member

Re: The new site and living with secondaries

I get scared reading posts in secondaries...as I contemplate what might happen to me further down the line. None of us can or should protect others from getting scared...we can't..it goes with the territory.

Jane

debsincornwall
Member

Re: The new site and living with secondaries

I still think Have I Got Secondaries would of been helpful to me, so that would be my reason for adding it.

Treatments, again being able to check how others deal with the same chemos, byphos, scans etc has helped me enormously.

End of Life Issues, are important to us all, it helps us sort things out for those we leave behind. Kate's organization skills on this have been priceless. Memory boxes and letters, she detailed it beautifully.

I understand what Kate says about women scaring themselves but it is just like the t.v. if it is not suitable then click off.

Debsxxx

JaneRA
Member

Re: The new site and living with secondaries

We are still divided about Have I got secondaries then?

I do hope this category remains for reasons I've written earlier. As Lottie says we do expereince of symptoms which can be helpful to others.

Kate: I envisage final stages covering wills, funerals, hospice care, end of life care etc so perhapss the title is wrong? Maybe it should be called End of life Issues?

I don't think there's a need for a separate trip neg forum in secondaries...it can all be dealt with under medical issues. If trip neg then her2...etc etc.

On reflection too I think the emotional/rant bit should just be the general title 'living with secondaries'

Jane

dippykate
Member

Re: The new site and living with secondaries

I'm still unsure about the 'have I got secondaries?' part and like Belinda's suggestion about it and using the sticky facility but have it in the 'worried about' forum instead. Just think that so many people seem to visit the 'living with secondary bc' and get very scared when reading other threads there so that way it would meet the need of many people's questions and not tempt people to hunt and read threads that scare them.
There is so much ignorance about signs of secondaries - worringly amongst the medical profession as well as any person with symptoms that are worrying them. However, I think that the place for such a thread iss in the 'worried' part of the forum. On reflection, I think our inpot is very useful in that we can give reasons why we think they should consult their GP/Onc and then empowers people to go to seek out help.
I like the idea of 'final stages' but wonder when do we enter that stage?= but at the same time, it doesn't particularly matter and you can't draw up guidelines either as I think we all would feel differently when we have entered that point. Again, I think it is a useful and much needed area to be discussed so we can all use our judgement when to post there. It also makes it clear to people what the content of that thread is about content and people won't accidently read something very upsetting.
I think some sub-headings will be used more frequently than others especially the medical issue ones but to split it up into specific sites makes too many sub-headings and is a catch all area for secondary sites, treatments and trials etc.
I feel it is very important that we do have an area for the emotional part of living with secondaries as that occupies a large part of what living with seondaries is like and would include the children/partner/family and friends part/
Trying to mentally go through the existing threads and trying to place them in the sub=headings that Lottie suggested and think it does cover all of them.
Still hoping that there can be a privaate/closed area too as aware that some people want to express their true feelings but can't as it is open for all and you never know who is reading your posts and that is inhibitive.
Maybe Lucy, you could list the current threads into these sub-headings so we could all see if it works oor if there is a glaring area not covered.
Sorry about the long post but just found it helpful to put my thoughts down and to see if other people agree with my interpretation of Lottie's sub-headings.
I've been asleep tonight but have woken up and having trouble getting back to sleep now after a rather upsetting day so glad these forums are here to occupy myself.
Katex

belinda
Member

Re: The new site and living with secondaries

Hi..I'm with Jenny and Kate in not wanting a Have I got secondaries thread.
I feel we will be inundated with worried forum users and we just can't offer any cast iron reassurances, which is what many worried, anxious posters will understandably be looking for. In fact having such a forum may lead to some seeking our advice instead of going to their GP or Onc. It could also delay many others from seeking medical advice. All we can really safely say is see your Onc or GP or go back to see them and a BCC sticky with some BCC advice about what to do if worried might be just as helpful instead. Perhaps with a phone number to call too. Maybe such a catergory has a place in the Worried forum? Although the only advice can still only really be to see your Onc or GP so perhaps a BCC sticky is what's really needed there.
Also a trip neg secondaries forum ?..I'm er+ but it's surprising to me that we still don't have such a forum.
Belinda..x

debsincornwall
Member

Re: The new site and living with secondaries

Maybe Have I got secondaries should come first, it looks o.k. to me.I am sure the others will be along soon.
Love Debsxxx

Sam_BCC
Member

Re: The new site and living with secondaries

Hi All

It seems like every ones in agreement of the following categories.

Medical issues
Have I got secondaries?
Communicating with others about secondary cancer (to include friends, partners, children)
Emotional issues/rants
Final stages
Meet-ups

If this is the case the categories will be created on Monday.

Best wishes
Sam (BCC Facilitator)

debsincornwall
Member

Re: The new site and living with secondaries

I also agree with lottie's idea
Debsxxx

JaneRA
Member

Re: The new site and living with secondaries

I think you've done it Lottie...like the divisions. And medical issues can include trials and tretaments so I think everything is covered.

Jane x

KatherineM
Member

Re: The new site and living with secondaries

I really like lotties proposal for the division of the board and think the categories are quite good, I also think that her idea of on line voting for board changes etc would be a fantastic way for BCC to get good feedback quickly.

cathy

LottieLemon
Member

Re: The new site and living with secondaries

Overall I would prefer not to have sub-categories under Living with secondaries as it would make navigation of 'latest posts' more difficult (I think!).

But if we are to have sub-categories I would prefer not to divide by site of secondaries, as useful info arises from posts of people who have different manifestations of secondaries from myself. And many have multiple sites anyway.

Also agree that 'Do I have secondaries' would be useful as advice to see oncologist (not GP) still needs to be drummed home. Also I think we do have expertise on symptoms we have experienced, even though advice should be to consult the medics.

So perhaps:

Medical issues (to cover all secondary sites)
Have I got secondaries?
Communicating with others about secondary cancer (to include friends, partners, children)
Emotional issues/rants
Final stages
Meet-ups

Not sure how a decision can be made on this.... there are web tools that allow voting on ideas (I have used IdeaScale) but BCC would need to set that up. That might be something BCC would like to investigate anyway, as part of their wider work on getting feedback on their proposals? Maybe?!

Lottie

JaneRA
Member

Re: The new site and living with secondaries

Thanks Dawn.

I agree!

Often there are wowen with possible symptoms of secondaries who have been fobbed off by their GPs rather than referred back to a breast unit. You have replied to such a situation today and it is unfortunately too common...we are not doctors...but I am not the only one to have learned from bitter expereince that sometimes some doctors can get it wrong.

Jane

dawnhc
Member

Re: The new site and living with secondaries

Then you are in a majority of 2 Jane! (you see sometimes we do agree!) I think it is a good idea because even if others think we are not qualified to give advice the questions are still going to be asked and even if the majority of responses are - you need to seek professional advice - it could just be that nudge that pushes the enquirer to do just that.

dawnhc

JaneRA
Member

Re: The new site and living with secondaries

I still think a section on Have I got secondaries is important..and a useful bridge across the artificial divide of those with primaries/those with secondaries. No we are not doctors but there's Have I got breast cancer section which is used a lot..we're not doctors there either.

But probably in a minoroity of this.

Jane

dippykate
Member

Re: The new site and living with secondaries

On reflection think should scrap - have i got secondaries as we are not medical experts and they should look at worried or watever itt was Jenny suggested.
Happy to go with main areas of spread, bone, brain, lung, liver and incurable regional recurrences
Still would like something about meeting up for secondaries so not scouting around different forums for infonand would like to include soemthing about the emotional issues which effect us all and maybe as jane suggested including final stages within there as again don't want too many subsects.
Would like to see something about children as sub heading specifaicclly for secondaries or include partners,family fiends in that part as we get a lot of posters poosting on behalf of their family or their family.
That gets me to 9 which seems too long.
Just thought treatments and trials would be good - look at the length of thread of going back on taxol so that's 10 subheadings. Must be able to shorten it
I'll sleep on it and see what others thoughts are. still think it best if we can get it subdivided though.

Jennywren
Member

Re: The new site and living with secondaries

That sounds good, Jane (incurable regional recurrence/regional metasteses), I didn't mean to exclude these in my suggestions but was wary of making a list of subsets too long because we are unlikely to get anywhere via that route.

Jenny.

JaneRA
Member

Re: The new site and living with secondaries

As I thought would be the case we can't agree on the sub sections

If there are categories for bone, brain, liver, lungs then please please a category for incurable regional recurrence/regional metasteses whatever. There is nothing, absolutely nothing in the whole of the BCC information and resources which provides information about this...

Something on final stages as a category?

Something on trials and treatments...

oh we're never going to agree...maybe just keep it as it is!

Jane

Jennywren
Member

Re: The new site and living with secondaries

I think;

Living with secondaries which has spread to your:

'Bones'
'Liver'
'Lungs'
'Brain'

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.

Jenny

mrsblue
Member

Re: The new site and living with secondaries

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

dippykate
Member

Re: The new site and living with 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
Kate
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

debsincornwall
Member

Re: The new site and living with secondaries

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

debsincornwall
Member

Re: The new site and living with secondaries

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

horace
Member

Re: The new site and living with secondaries

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'.

JaneRA
Member

Re: The new site and living with secondaries

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

Lucy_BCC
Member

Re: The new site and living with secondaries

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
Lucy

lizandrob
Member

Re: The new site and living with secondaries

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????

belinda
Member

Re: The new site and living with secondaries

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

belinda
Member

Re: The new site and living with secondaries

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

celeste
Member

Re: The new site and living with secondaries

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.

jantharra
Member

Re: The new site and living with secondaries

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

Nikki

Allicat
Member

Re: The new site and living with secondaries

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!

ripley
Member

Re: The new site and living with secondaries

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.

xxx

dippykate
Member

Re: The new site and living with secondaries

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
family/friends/partners
children and secondary bc
treatments
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
Katex

LesleyLP
Member

Re: The new site and living with secondaries

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

KatherineM
Member

Re: The new site and living with secondaries

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.

Marilf
Member

Re: The new site and living with secondaries

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

JaneRA
Member

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..

Jane