I’m opening this thread in the hope that there may be a debate between those of us who have a primary diagnosis and those with a secondary.
I have primary BC…I’ve been through chemotherapy (won’t shorten the word caus it’s poisonous sh*t and not my mate) been through rads and am currently on hormone treatment…trying to gat get back to a life before BC so I’ve worn one tee-shirt.
Since the beginning I have read secondary threads not for inspiration ( I personally hate that word )…but more for knowledge in what may/may not lie ahead. It appears to me that there seems to be a distinction between primary/secondary paricularly on the new forum. Correct me if I am wrong but I often feel that those on the seconary thread feel that those of us with a primary diagnosis can’t know or understand what they are going through. To some extent they are right but in giving out that message are they not excluding like minded primary women?
I read threads on the secondary thread to which I would like to respond to but feel uncomfortable to do so because I doon’t have secondaries.
We use this forum because we or a family member has BC.
To some exxtent that is what unites us…but also age, life experiences and personality unite us to those to whom we can develop a link in terms of like minded women.
I often feel I have more in common with the seconary threads which develop more interesting debates about BC than primary ones but feel I wouldn’t be welcome so I end uo in a rather lonlier place.
How do otner women think about about this distinbtion?
Trish
Hi Trisha!
I too read the secondary threads a lot although I don’t (as yet) have them. As you say there are often very interesting discussions on there. I don’t know what the secondary women think about primaries joining in, they probably feel that we don’t know what it’s like - which of course we don’t. Perhaps some of them can let us know if we would be intruding on something private to them.
Can i just say that motives are usually a lot kinder.
Many women with a primary diagnosis are under enough stress that they do not really need to hear about the overwhelming trauma, despair, pain, severe illness and death present on secondary section.
There are a lot of helpful posts and encouraging discussions.
However there is a lot of angst and worry about leaving our children motherless!!!
Having been a primary for 8 years I know my anxiety would have gone into overdrive knowing some of the things I know now.
Keeping a separate part makes sure that people who cannot cope with this cruel reality have a choice!
Although there is alot which unites anyone with bc, I think its good to have forums where you can talk to people ‘more’ simular than just everybody (the Men forumsfor example)- but everybody reads them anyway! I post alot on the younger womens forum and find its seperateness useful- but have been very moved by lots of messages of support from older women on a recent thread
I guess the thing is when you are in the midst of treatment for primary bc you may feel very simular to sec cancer paients, but hopefully you will reach an end to your treatments, and as sec cancer is currently incurable, I would say there are very many issues that we, as primary cancer paintents, never hopefully have to face
good luck with your treatment
Sam
Hi there…Speaking as someone who has got secondaries I wouldn’t mind anyone with primaries joining in a secondaries thread. I read some other forums but gave up reading quite so much when I read comments like ‘I don’t go into secondaries too depressing’’ this depressed me as the Secondaries forum is one of the most supportive forums here. But being honest if I had primaries there are threads as Juliet has mentioned which I might want to avoid just because I wanted to get on with my treatment and try and go forward so I can understand the comments although I sometimes want to reply that I really don’t lead a depressing life. There does seem a wide divide between us and it’s been constant since I was diagnosed with secondaries in 2003. In fact I feel it’s got wider and wonder if some of the reason is Pink October. I know a lot of us (although not all) with secondaries feel let down by all the Pink marketing hype. I personally can’t bear Asda calling their campaign ‘‘Tickled Pink’’ to me it’s inappropriate when so many very young children are losing their Mums to this disease. But that’s just my opinion. I guess there are women with primaries who like to end their treatment and move on (nothing wrong with that!) whilst others acknowledge there is no guarantee their breast cancer will never return. I guess it’s the 2nd group that might find our threads worth a read and might like to post. Could only suggest if anyone wants to join in a discussion they go ahead…we are a very friendly bunch. I think I find it hard to participate in primary discussions as I was diagnosed stage 4 from the very beginning but I’ve had excellent responses to treatments and have added little posts of (I hope) encouragement to anyone with primaries suffering Tamoxifen or Arimidex side effects.
Belinda…x
When I re-read my original posting I can see that the title is mis-leading… I don’t for one moment think that there shouldn’t be a secondary forum. I can understand that some women with primaries don’t want to access them for their own reasons and those with secondaries need to be able to discuss issues with each other.
From the beginning, I have searched for knowledge on many fronts and have, I hope ,a realistic understanding of what may or may not lie ahead. There are times when secondary threads turn into interesting discussions such as the ‘pinkness of breast cancer’ or death and dying which primary threads tend to avoid. Such issues affect us all irrespective of what stage our cancer may be and I have wanted to respond but hesitated because the discussion is under a secondsary thread. I noticed once or twice in the past that when women with primaries jumped in there was a sharp reminder that this is a secondary only thread.
I tend the think there are too many separate categories in the primary forum and too few in the secondary forum ( just my opinion)
So perhaps I should re - phrase the title into something along the lines of ‘Would those with secodaries mind if those with primaries jumped in from time to time’ …
Trish
Hi trisha,
I remember when I had primaries, whenever I ventured onto the secondaries site, it felt like I was peeking around a curtain, where I really wasn’t supposed to be. I don’t know whether I was trying to see what the future might hold for me, or just curious as to what the future might hold for some women. I had DCIS, so no, I didn’t really think I would ever have secondaries.
I rarely venture onto ‘primary’ parts of the site now, simply because too often I want to say things that actually would only serve to disturb. Reading someones story told in innocence an d knowing what the future MAY hold for them, you want to blurt out ‘take that holiday’ ‘pack in the miserable job’ and ‘dump the louse’, sometimes it can feel a bit like looking through fingers clamped over our eyes. I should say just because we have secondaries, doesn’t mean we are onc’s.
But that wasn’t really your question was it.
Trisha I want, and need a place on here where I can agonise about things, if I feel the need, never going to see grandchildren, or even my children married,my husband and I are never going to get our retirement trips. Our bodies do ever increasing unpleasant and painful things, and occasionally I want to talk about and be reassured and supported about that.
This is what I am trying to say Trisha, I don’t mind who comes on here, I really don’t. What I would mind is if people were to come on here and participate without really understanding, that secondaries is a very different experience.
So for all that Trisha - and I don’t speak for everyone - I say to you and all who would wish to come here and appreciate that Welcome.
I am impressed that you brought up such a potentially tricky subject matter.
Take care
Hi Trish
Really timely you bringing this up. You may have seen a thread running in secondaries this week called: ‘I don’t have cancer every day’ which has revealed how much women with secondaries can disagree with each other…and what a relief that is! Gosh we are not all the same.
For myself I can’t say my attitude to having cancer or my thirst for knowledge about cancer have particularly changed in the whole 5 plus years I’ve lived with cancer. Originally diagnosed with Stage 3 locally advanced breast cancer I always felt I had something in common with women with secondaries because I never from that moment onwards thought I would do anything but die prematurely from breast cancer. Now I still don’t technically have ‘secondaries’ because my cancer has not spread to ‘another part of my body’ though as my regional recurrence is incurable I am in the same boat as anyone else with an incurable diagnosis…except I expect because I’m running out of treatment options that I’ll die long before some of the women who have been living for years with ‘proper’ secondary breast cancer.
I see the experience of breast cancer as a continnuum…there will be women who were diagnosed yesterday with IBC or locally advanced breast cnacer or another aggressive kind of breast cancer who will find themselves in he secondaries club in 6 months. And in the secondaries club as I said earlier there are vast differences amongst us, not just in our cancer diagnoses and prognoses but in our attitudes and approach to living with cancer (as there are among primary women.)
I’ve quoted the brilliant Miriam Engelberg before…cartoon book…Cancer made me a shallower person…and she has a really funny cartoon about the ‘pink ribbon gang’ and the ‘cancer sucks gang’ and it seems to me that this is an accurate depiction of the hugest divide in the breast cancer ‘community’ and it crosses the artificial primary/secondary divide. You are either basically in the ‘cancer sucks gang’ or the ‘pink ribbon gang’…and I’m proud to be in the former and its with the kind of women who truly understand why cancer sucks that I want to identify with…not with anyone trying to think up or make up pluses and positives of having any kind of cancer…that just bores me solid.
I think I have once reminded someone that they were posting on a secondary forum but that was when I had explicitly started a thread for triple negatives with advanced breast cancer and someone replied to describe their trip neg. primary diagnosis. I didn’t mind she’s done that but it didn’t fit with the intention of the thread.
Otherwise I welcome anyone who wants to post on any forum…I sometimes post on the younger womens forum and the mens forum!
I think I did the most thinking about death, dying prematurely, incurable cancer at my primary diagnosis…and what has happened since refines that as what has happened to me since is not clinically as I envisaged. I find many on the secondaries forum with whom I can feel solidarity and support but some I don’t and can’t because their take on having breast cancer is so utterly unlike mine. I don’t think just because someone else has breast cancer that only they can understand. Sometimes they don’t or their experience of bc is so different from mine that we might as well be strangers.
I think that having cancer is very lonely Trish but occasionally each of us glimpses a sense of solidarity with others, but that doesn’t happen for me a lot of the time. Certain subjects are as taboo on secondary forums as anywhere else.
Random thoughts…I’m about to return to bed with chemotherapy exhaustion…unfortunately its another cancer day which I’m failing to forget…
Jane
Your clarity never ceases to amaze me Jane, exhausted or not!
Sass xx
Hi
I am glad to see this topic raised.
In my personal experience I have found the women who regularly post on the secondaries bits open and welcoming when I have occasionally “peeked around the curtain”.
For me I think the curtain is self-made. I have had horrid dark times since my dx where I have contemplated death, not seeing my kids grow up etc, and have found reading the threads on the secondaries both helpful - (making me realistic) - and not - (scaring the pants off me!)
At times reading secondaries threads feels a bit to me like people slowing down at a traffic accident to see the dead and dying - uncomfortable and voyeristic. Thats not because anyone has pulled the curtain down in front of me and excluded me its just that I get the feeling that I am intruding where I shouldn’t be because (as you are often told by friends/family etc when you have primary BC) - I’m going to be fine and that I am being too morbid thinking that this might kill me. The pink and fluffy primary BC world I think accentuates this - “you shouldn’t google too much”, “you’re cured” therefore to step behind the curtain and consider/ask/question feels like you are doing something wrong - not being positive!
I choose not to post on the secondaries threads generally (I think I have only done so once or twice) because I don’t believe I can truly understand and don’t want to make unhelpful/crass comments but I do believe that if I want advice and ask there I will get honest and open replies (as I have done once or twice) and believe that this will continue to be the case.
I am the person to whom Jane referred as having posted on a secondaries triple neg thread when I am still at primary stage.I didnt mind her telling me and deleted my post because a)it was a genuine error on my part,I saw the words triple neg and joined in without noticing it was part of secondary forum and b)because the experience of triple neg secondaries women is very different from primaries because of their limited treatment options.
It has made me reluctant to post in secs as I would be reluctant to push into a private conversation.However,if ever I feel I have something useful or meaningful to contribute then I would do so.I dont read all the sec posts but do read some as being part of the bc world we all wish we didnt inhabit.If we are not meant to read or contribute at all then the forum should be closed as it is elsewhere.As long as it is open to all then you must expect all to read it.Maybe there should be a warning in the forum heading-,This forum may contain material which would be disturbing to the newly diagnosed.
Secondary ‘chat’ is private and that is very right and appropriate.
love Valx
I do read the secondaries threads quite often and I must say that I do have the greatest respect for how all of the ladies seem to deal with their diagnoses. I don’t think I have posted, well not often anyway because I feel that I would be intruding, I can’t begin to imagine what it is like to be told and have secondaries.
I hope to goodness I never need to know, somedays I have very dark thoughts and convince myself its going to happen and others I cope quite well with my primary.
I had started on this forum before my actual dx in the “do you think you might have BC” and I was mis diagnosed by 5 different Drs. Eventually the diagnosis of IBC came, plus HER2+ and I thought my life would end.
Now I am NED (for now) so I consider myself so lucky, but realistically I think it will always be there of what I may have to face in the future, and yes I do get upset sometimes by what I read.
So, if I post on the secondaries forum I hope the ladies don’t mind.
I have been reading the secondary section more the last week or so, really since i noticed there was the option to see latest posts…
I was diagnosed with IBC last May so like Peacock have just finished chemo, mx and rads. Unfortunatly i also had some lymph node involvement, so realistically i doubt that is the end of the story.
I did ask my onc my prognosis the week before last and she just refused to say - she said she “hopes” that is the end of it but given what i have she doubts it.
So i feel like i am in a bit of no man’s land really - a secondary patient waiting for something to happen i guess… Who knows perhaps in 10 years time i will still be waiting for something to happen - but i doubt it really…
So to stop rambling - yes i’ve also wondered in the last week or so - would it be okay for me to post in the secondary forum from time to time or frowned on…?
One of the US websites breastcancer.org has a separate froum for Stage 3 cancer. I’m not particularly suggesting this but have always thought that people diagnosed at Stage 3 share much in common with those with secondaries…yet in the UK people tend not to even talk about being stage 3. There’s a big difference in my view between someone diagnosed with a tiny er+ pr+ tumour, no lymph involvement and someone with IBC, locally advanced breast cancer or substantial node involvement. Equally there are huge differences among women with secondaries…some can expect to live many years with say indolent bone mets, while others with aggressive tumours affecting more organs will die very quickly.
As I said in an earlier post peronsally I have no issue with anyone who wants to post in the public secondaries forum.
Jane
Many thanks to all who replied. As ever I am grateful for the diversity of opinions.
I havne’nt been on the forums for a while as I find I keep slipping to the bottom of a deep dark hole (metaphorically speaking).In my mind’s eye I see myself desparately trying to cross ravines only to find when I think I 'm nearing the end I slip and fall to the bottom, whereupon I have to pick myself up again and climb to the top, only (so it seems at the moment, never to quite reach it)
I realised early on that life could never be the same after a cancer diagnosis but somehow (perhaps niaively)I assumed I was strong enough to be able to pick up the pieces and carry on in a different way. I keep hearing that time makes things easier but from where I am at the moment I can’t see beyond today or perhaps tomorrow.
Celeste, I too wonder if I will see all my children married, I wonder if I will see mmy new born grandson toddle or even go to school.
Jane, I often think of the artificial divide between those with primaries and secondaries. I happen to think that there are many other factors which come into play when striving to find solidarity within the breast cancer community… such as age, lifestyle, values, the things which made us who we are as human beings.
I know I don’t belong to the pink fluffiness of BC cos I cringed when I read the words ‘Its a girlie thing’ I stopped being a girl many many years ago when I became a fully grown up woman. How, when most BC diagnosis involve woman 50+ can they say this? I would love to have been a fly on the wall when the slogan was being discussed.
Do the charities involved have true representatives of BC people
on their staff or do they employ young and up and coming advertising people with little knowledge. Sorry have digressed from original intention which was to say many thanks for replies.
Have come to this thread very late - result of tending to check the secondaries forum regularly but not often venturing out as it were! Wanted to say though that as someone with liver secondaries (or am I in fact as I am currently NED?? I too sometimes can feel a bit of an “impostor” in the sec forum) I would welcome posts from ladies with a primary dx on secondary threads. I feel sure that I would be one of those who, if I just (!) had a primary dx, would want to read such threads to gain more information. Obviously there are many who will choose not to, but I would like to think that those who do, feel able to post if they want to.
I am also really interested in your analogy, Trisha1, with the idea of ravines and falling. I have developed over the years since my primary dx a very detailed analogy to try to explain to myself and others some of the emotions (and effort) involved in “living with cancer”. It is based on falling down a mountain and over the edge of a precipice (where I am now stuck on a ledge) - won’t bore you with all the detail. JaneRA also introduced me to the work of JPoet (who used to post on this forum I believe - was before I “joined” and she is another person who sadly has died as the result of this disease). Am thinking in particular of her poem Freefall which has similar ideas but expressed so much more eloquently than I could ever achieve. Don’t know whether you know her work.
Am digressing even more than you did, Trisha1! Kay
Kay…I thought of jpoet’s poem too.
Google Sandra Lovegrove Trish and you will find it.
Jane
Just stumbled on this tonight - very interesting thread. I actually recently have been feeling like now that I have had secondaries diagnosed that I don’t feel comfortable posting on the primary threads anymore as afraid of upsetting or frightening people now that I’ve crossed the line so to speak!I am currently NED after 9 months of chemo so feel in a sort of no man’s land but feel the secondaries forum is so supportive - not that the primaries are not.I don’t mind anyone with primaries posting on the secondary forum at all - although it can be scary - I used to take a peek every now and then into the secondary forum when originally diagnosed but found it all a bit scary and unknown - I didn’t actually use this site at all until about 9 months after my primary diagnosis until I could handle the information better.
It is so tricky to get the balance right and people cope with things differently and at different speeds. I used to post about wanting to try for a family and took hope and optimism from others about it but I only did 2 years on tamoxifen in order to come off and try for a baby and will never know if that has contributed to my secondaries or not and I never did get pregnant and yet I resist from saying that to people who post with hope for a family as I would never want to scaremonger and we have to do what feels right for us.
It does upset me though sometimes to feel afraid to post on the primary thread as though I’m a leper or something even though I’m sure people wouldn’t really think that but we all need support not added fear.
Interesting one.
I think those of us ‘ahead’ of others sometimes have information which people at primary stage may be longing for…not true for everyone but for some people.
Anne…you mention the issue of children…one of the wisest posts I ever read was a reply from sixpen (diagnosed with secondaries when pregant and died a few months back) telling a woman after primary diagnosis about her thoughts on having a child. It was incredibly moving and written with the knowledge that only someone in that situation can know. Not scaremongering but adult responsible conversation.
As I’ve said before I get impatient with the call to put not frightening people at the top of priorities…how is anyone to know what frightens someone? (I feel frightened at the thought of being sick once on a cycle of chemo,; others might think thats nothing frightening at all)It is but one of many values to bear in mind when talking and informing ‘across the divide’
Jane
I absolutely don’t mind people posting on the secondary forum asking for information or offering support…as long as people realise there is a world of difference between worrying that you won’t see your child grow up to knowing that you are not going to see that.
Jane - I know exactly what post you are referring to from Sixpen, it was beautifully written and very thoughtful.
We have alot of information to share - unfortunately its not a hard and fast line and plenty of people develop secondaries, so we should not have a fixed and rigid line on the board that people can’t cross.
cathyx