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Have many had secondaries after clear nodes?

91 REPLIES 91
Katie61
Member

Re: Have many had secondaries after clear nodes?

Diane,
I am so sorry to hear that. How are you doing now, I hope treatment is OK for you, not too hard?

Can I ask if you had any symptoms of the secondaires or how they were picked up?

katie

diane1w
Member

Re: Have many had secondaries after clear nodes?

Hi

I too had lumpectomy with 6 nodes removed that were all clear and good clean margin was taken around the lump. Unfortunately 16 months later I was diagnosed with secondaries in my chest wall, lymph node, liver and lung. I am also triple negative.

Diane

cottoneyedjo
Member

Re: Have many had secondaries after clear nodes?

Hi

I have seen a paper that says that 'Comedonecrosis is an unfavourable marker in node negative invasive tumours'.

Comedo is a grade of cancer and the necrosis (dead cells) show its growth is fast - I assume this is on the histology (path) report but I don't have a copy of mine yet.

Jo xx

lyndu
Member

Re: Have many had secondaries after clear nodes?

I'm following Jennywren's suggestion to move "Have many had secondaries after clear nodes?" to the Forum feedback area so I've started a discussion there. Don't apologise for the hijacking, I think it's a good discussion.

Lyn

Jennywren
Member

Re: Have many had secondaries after clear nodes?

I agree wholeheartedly with Belinda's comments above.

I also think this thread should go into forum feedback, as it has drifted far from the original thread (for which hijacking I apologise).

Jenny

belinda
Member

Re: Have many had secondaries after clear nodes?

Hi to all.. I don't think there would be any noticable change to the 'open' secondaries forum. In 2005 a large group of us posting here started a private mets only board, I can't think of anyone who didn't continue to post here and now there are the very large number of forum posters who are part of bcpals who also continue to post and offer support. We all seem to still log on, welcome new posters, offer advice and support, the secondaries forum has continued to be a very supportive place even though many of us now access other boards. I hope we can have a closed forum alongside the open one..I know the shock of coming to terms with my own diagnosis, how to live the rest of my life, how to prepare for death whilst trying to live well..coping with the uncertainty..how my family live with my diagnosis, constant trips to the hospital, ongoing treatments, some symptoms and much more..these were all topics I felt (at times) unable to share (still do) on an open forum. A private place here especially on first being diagnosed stage 4 would have been an additional and most welcome lifeline. ..xx

lyndu
Member

Re: Have many had secondaries after clear nodes?

I don't have secondaries, but I'd like at least part of the secondaries forum to stay open. My only concern with a private section to the secondaries forum is - how many of the posters with secondaries will continue to use both, and how many will, without really intending to, end up posting only on the private secondaries forum - I already find it hard work to keep up with the number of different forums on the site. I know that's what happened on the US sites when bcmets hived off from the bc discussion list - the "main" bc list now has very few people with mets on it, and is less valuable in consequence.

I came to this discussion pretty late as I didn't even realise it was in the secondaries forum - I just saw the subject line of "how many node negative women develop secondaries" and followed that.

I do think people on the forum have to accept responsibility for what they read. If you are feeling fragile, acknowledge that and don't go into scary, dark corners. And I don't have secondaries, but I have had a second primary diagnosis - so I have also had some experience of being the spider hanging on the ceiling when talking to a couple of people who had bc at the time of my first diagnosis. Oh, no, I don't want to know that doing it once might not be all, go away, go away...

I just wish I'd thought of Jane's wonderful (in this context) observation - "Don't worry, statistically you're more likely to get mets than be in my situation" . Not kind, but it would have been very satisfying...

Lyn

Molennium
Member

Re: Have many had secondaries after clear nodes?

I would like to go into part of the secondaries forum. As far as I am concerned we all have breast cancer and I feel it's sad that some people feel they should be segregated away, I can see that sometimes people might want to discuss things privately but I'd like to keep in touch when they want to do so.

Mole

ForumMember
Member

Re: Have many had secondaries after clear nodes?

I echo Belinda

Anne xx

belinda
Member

Re: Have many had secondaries after clear nodes?

I like the idea of open and closed secondaries forums, with applications going to moderators..I would use both forums. Belinda..x

dawnhc
Member

Re: Have many had secondaries after clear nodes?

I think it would be hard to guage how much use a closed one would get without impingeing on the open secondaries. But it seems from the comments here that it would be a good compromise. . I think beneath each forum title on phpbb forums there is place for a couple of lines of intro to the nature of the forum so both open and 'closed' could have an explanatory note making clear the difference between the two and how they could be used. It is possible for the 'membership only' sub-forum to be visible as a forum title to all viewing and to state there - secondaries private area - application for membership through moderator. I think it was jennywren who said she would like a more private area to discuss our more personal thoughts.

I think it is probably a good idea to copy (or split) this discussion with the relevant part put in forum feedback.

dawnhc

Ann_BCC_
Member

Re: Have many had secondaries after clear nodes?

Hi everyone

I have been speaking to our technical team about closed areas on the new site. When we get the new software for the forums it is likely we will be able to have areas where only those with certain permissions can read and post ('closed' areas).

There are a couple of things I would like to clarify before we go ahead and find out more about this.

What is the demand for this? Would enough of you with secondary breast cancer use it to make it a viable community?

How would you see it working - would you like people eligible to join to apply through the moderator or do you have other ideas for managing entry?

For the reasons so eloquently stated above we would not like to lose the open secondaries category - many of you with secondary bc find us through google and this is not possible if all the discussion is in the private forum. So how would the public and the closed areas relate to each other?

Lastly, shall I copy this post to forum feedback so you can continue the discussion there?

If you can give us maximum amounts of feedback on this it will help us determine a way forward

Best wishes

Ann

Liverbird
Member

Re: Have many had secondaries after clear nodes?

Well said Jane.
Can i just say i have found that after reading the secondaries forum i have been able to help friends with secondaries who do not have access to a computer and some who wouldnt come on this site.

Makes my blood boil that anyone but especially ladies Dx with cancer don't want secondaries discussed, dont want palliative care discussed or funeral arrangements.

Like someone mentioned above i stopped going to a 'support' group as they just wanted everyone to be 'well' and God forbid anyone to talk of secondaries and dying. I as far as i know am a primary BC person but if i got secondaries i would not be half as scared as i would have been if i hadn't read these posts.about the vast amount of treatments possible.
I have quite a few friends with secondaries and i feel they can share anything and everything with me if they so wish.

One of the things i dont wish for is a site that could be cliquey and private forums can lead to that.

Rx

JaneRA
Member

Re: Have many had secondaries after clear nodes?

I don't think the issue of privacy is one just for people with secondaries. It amazes me how much personal information some posters in general post about their personal circumstances....freinds, family The worldwide web is an open highway and a new way of communciating..we all have to find the limits of our own privacy..and our own boundaries..and I guess we've all (particularly perhaps the less cyber world savvy) had our fingers burnt. But this is not an argument for inventing new versiosn of 'privacy'.

I think the forums which help me most are those that are on the worldwide web..plenty of traffic, plenty of variety. Breastcancer.org, TNBC, bcmets are all superb US open sites ( I use them less cause the culture is differnet and I prefer the culture of UK boards...and i spend too much time on them as it is!). I think through pms and contact buttons its possible to set up one's own areas of privacy with those one feels safe with, with shared needs/perspectives.

bcpals falls somewhere between the two and Ok for some but I don't find anything particularly more personal shared there than on BCC. Though I think bcpals meets a real and valuable gap in the on line bc community.

The most valuable contacts, the bestest support and understnading I have are in one to one pms and on going e-mails and face to face meetings with a few wonderful women I've 'met' on-line.Some of those kindred spirits have secondaries and some don't.

Jane

dawnhc
Member

Re: Have many had secondaries after clear nodes?

I guess the privacy issue is why other breast cancer forums such as bcpals have arisen and the private mets forum. Several have found their way to them because of unwanted intrusion from friends, neighours and family members. There is clearly a need for both types. If it wasn't for the openess of bcc many would never discover the existence of these havens. Although it is spelt out when we join here that the forums are open to all to access through googling (indeed that was how I first discovered this site) it is something we tend to lose sight of as we get accustomed to joining in with the general chat here.

dawn

Jennywren
Member

Re: Have many had secondaries after clear nodes?

Thank you Dawn, you have explained my point very clearly.

Cathy, you have also made a very good point. I met a woman very recently, who was having problems with a family member who had read her posts on this board, and subsequently doesn't post.

Jenny

ForumMember
Member

Re: Have many had secondaries after clear nodes?

I think you have a good point, Dawn. There may be other issues that would be better in a private forum also, such as trouble with family etc. I often am concerned when reading these posts about the details that are given that wouldnt take much to work out who is who and could cause huge trouble if found by the wrong person. Clearly, people need a place to talk through their problems but maybe in a more secure environment?

dawnhc
Member

Re: Have many had secondaries after clear nodes?

I think we have two different issues re Secondaries being a closed forum. From many of the remarks in this thread it seems there is real value in the forum being open (maybe carrying a 'health' warning). The idea of having a private secondaries sub-forum is valid. As jennywren says:

"Other sites have been set up to in order to provide privacy - not simply to spare some from the scary stuff - but because we don't want to discuss these issues with the world at large. They are private."

For many it is the fact that bcc forums remain open to anyone searching on the www to read. These are not private forums readable only by its members. Some of us with secondaries are dealing very much with life and death issues and don't want to share in depth with the knowledge that anyone searching the net can find our posts and identify us - even though our name may not identify us it is difficult to achieve total anonymity. It would be a shame with the new forums approaching if bcc did not take the opportunity to provide an area of privacy whilst keeping the main secondaries area open. Perhaps so many would not be search for other sites that offered this.

dawnhc

dotchas
Member

Re: Have many had secondaries after clear nodes?

Maybe as suggested before the forum could be open but with a "members only" section for their private discussions.I think some of the information on the secondaries forum is invaluable to others i.e. signs and symptoms and treatments available.But i do understand why some ladies would rather some thoughts and personal feelings shared in private.

horace
Member

Re: Have many had secondaries after clear nodes?

I think ultimately those with secondaries should have the right to choose whether their forum be open or closed-perhaps a poll would ascertain a majority feeling.

Bahons2
Member

Re: Have many had secondaries after clear nodes?

I would echo sentiments backing an open forum for secondaries.

I have found the pragmatism and down-to-earth approach of many of the contributors invaluable.

I have learnt an awful lot about secondaries, too - real, useful, information, as opposed to what Lady Chatterbox so rightly refers to as the 'sanitised' approach.

Thanks to all those with secondaries for being so candid.

X

S

ForumMember
Member

Re: Have many had secondaries after clear nodes?

Just like to add although I havent got secondaries, I am well aware it could be a possibility at some stage, so I think it is important to keep an open forum. For me personally, the secondaries forum is not frightening, on the contrary, some of the posters, who are very ill, are so upbeat about their lives, despite cancer. It is very sad to know that they are so ill, but they seem to have such a love of life, that I do feel feel inspired when reading their posts. Other postings, on the other hand, can be so depressing - nothing to do with illness per se, as some of the more negative posters, have not got secondary cancer, so its down to their individual personalities and what they say which is depressing, rather than their severity of illness.

LadyChatterbox
Member

Re: Have many had secondaries after clear nodes?

I respect the wishes of members with secondaries to have a private place but I do hope that those of us with a primary diagnosis will not be excluded from the general secondaries board, partly because of the reasons Rachy gives above, but also because I am already (9 months from DX) flabbergasted by how SANITISED approaches to primary BC may be. Many aspects appear to be swept under the carpet or referred to euphemistically....which is one reason I appreciate the generosity of members such as dippykate, who will share their experiences and thoughts.

Best wishes to all,

Louise x

rachy7
Member

Re: Have many had secondaries after clear nodes?

Hello ladies, As a person with a primary diagnosis reading the secondaries reminds me that I could easily be in this catagory at any time. A 'good' primary prognosis does not guarantee NED. Reading the secondary threads gives me a reality check and I am genuinely interested to read how all of you deal with it. I am scared sometimes but pretending that I do not have a potentially life threatrening disease will not help me. I like to be realistic but have some hope for the future.
Carry on posting ladies. The suggested books are always of interst to me. What would be a good one to start me off on reading about bc ?

Rachael

belinda
Member

Re: Have many had secondaries after clear nodes?

Hi Pinkdove, I can really relate to your post, when I was first diagnosed I spoke to someone who was running a local younger women's group..I was told I'd be most welcome and there was another lady, like me, with bone mets but the rest of the group didn't know about her mets, I never joined the group. A friend who died last year raised thousands of pounds for a Maggie centre but was told she would upset others at the very bc support group she'd helped raise the money for and she was quickly ushered away when she went for a visit..she had brain and bone mets and was unstoppable, she really lived life until the very end.

ForumMember
Member

Re: Have many had secondaries after clear nodes?

I tend to agree with a lot of the comments on here about it remaining open as there are a lot of women out there with primaries who do want to know about secondaries and if it was a closed forum this wouldn't be available to them.

I also agree though that those who are upset, depressed or whatever after reading our posts shouldn't come onto this section - there are loads on here that I don't go onto because they don't relate to me.

We have had a similar problem within our support group (there are now 6 of us with secondaries) and I'm not 'allowed' to talk in the general group about what's going on for us as it may 'freak' others (this is the words of the breast cancer nurse). The really interesting thing though is that I find that us with secondaries are far more upbeat in lots of ways than some of those with primaries! But we also support each other when times are hard and for two of our little group things are very hard for them at the moment.

There is never going to be an ideal solution which suits everyone as we are all different.

Ann_BCC_
Member

Re: Have many had secondaries after clear nodes?

Hi everyone

We have been following this debate and will certainly take these views on board as we are developing the new system.

All the best

Ann

dawnhc
Member

Re: Have many had secondaries after clear nodes?

I knew when I commented on Jakki's post and raised the issue of a private secondaries forum it would spark further debate and there have been some really good constructive comments made. I do want to apologise to Katie61 though because her original question seems to have gone off track. When the new style forum is in place I think there is a facility to make sub-forums within a main forum. Perhaps Moderator it will be possible to look into having a sub-forum within Secondaries entitled 'Our more private thoughts for members'? so that the main forum continues as is with opportunity for some of the really tough stuff to have a degree of privacy.

dawnhc

skimum
Member

Re: Have many had secondaries after clear nodes?

I'd just like to echo what a lot of you have already said.......if reading about women with secondary bc upsets or depresses anyone then stay away from the secondary forum, simple as that!
I was diagnosed with stage 3 bc and as a nurse am nothing if not realistic, I currently don't have secondaries (as far as I know) but feel 'closer' to the women on the secondaries forum in lots of ways. I find the 'us and them' mentality of some forum users sad and agree that within a secondaries forum secondaries should be able to be 'talked' about openly.
I for one would not like it to be a closed forum but I can certainly understand why a lot of you with secondaries would........unfortunately this is not the first time this sort of debate has occurred.
Claire x

sukes
Member

Re: Have many had secondaries after clear nodes?

ALL,

My views are that first of all, all of the ladies on here have been a great support is some way or another. Everyone is different and everyone had views and opinons - some we agree to others we don't. I was dx with primary BC in dec o07 and yes i have read some of the threads on secondaries, and yes it is frightening to read what the future may bring but it is also an educational process and could potenially help someone in an early secondary dx if there is one.

As an adult i make the choice to read what i want to and if i find there is something that is too uspeting i simply avoid reading it or log out. I don't think you ladies with secondaries should feel guilty or suffer in silence as suffering with BC or any type of cancer is traumatic enough for anyone.

Jane - good luck for your appointment
Katie 67 - dont feel guilty we are all human and everyone it entitled to their opinion - if we were all the same the world would be a borring place.

sukes

jumpforjoy
Member

Re: Have many had secondaries after clear nodes?

Yes - a very interesting thread. I think we take from or give to the forum in many different ways. I come on it more for practical and factual information and I can see that others come for this too, but also for emotional support. I think it is fine to take from it what you want. We must be able to say whatever we want, and people can agree or disagree and add their own comments.

We are all in very different situations, and are dealing with it in very different ways. I personally wouldn't post my most innermost thoughts,as I am a very private person. But I respect that others wish to share their thoughts with others. I find it interesting to know what others think, even if I don't agree. It's like some people join support groups and meet up with others in same situation and gain a lot from it and others wouldn't dream of joining any such group, as I said before we are all different.

Sorry, I don't seem to have added anything new to the discussion, but just wanted to have my say - which is what this forum is for!!. I do agree it is best to have a separate forum for secondary cancer, but I sometimes look at other areas of the forums ,out of interest, so I think I would come down on the side of not keeping the secondary site private).

JOY

chalee
Member

Re: Have many had secondaries after clear nodes?

Please don't make the secondaries forum exclusive. For me, there's no point to the BCC forum if I can't learn about what it is to be a human with cancer. There is no point in it being a place where the Chat forum was the most used. x

belinda
Member

Re: Have many had secondaries after clear nodes?

I'm with Jenny on the vultures aspect..I can remember the posting..I'm quite a private person and this diagnosis hasn't changed me I always have been..I've already told some stage 4 friends I don't want my death announced on the world wide web..I'd rather it be on a private forum some of us here use. I use the BCC forum for sharing information, wishing others well with treatment and trying to be supportive where I can and will continue to do so. I've stopped posting on other BCC forums apart from where I think my experience might be useful. Another private forum for advanced cancer is where I share more intimate stuff and although we've lost so many friends there it's a supportive place, a haven. I was so glad there was no BCC death announcement thread for a well known forum user who died last year..it was not what she would have wanted, we'd exchanged emails about it, those who knew her well know she's died and she's very sadly missed. I know others will feel differently about how much they wish to share with others and this is only how I feel, my thoughts. I hope the Marsden visit goes well Jane. x

JaneRA
Member

Re: Have many had secondaries after clear nodes?

Hi Cathy

Yes you're so right. Keep logging on to keep my jitters at bay before Marsden...

Go on distress us!

Jane x

KatherineM
Member

Re: Have many had secondaries after clear nodes?

Hi jane

I like the question - I think its because the two go hand in hand answer a factual question about secondaries and people are furious and annoyed because it makes them think they could become part of our club that no one wants to join, turn someone into a hero and what you are really saying is - this person has different qualities to me - this couldnt happen to me, wouldn't happen to me. So personally I dont think its a mismatch at all - think there is the same feeling behind it.

I have a chiild with serious disabilities and I get this all the time - from you know what to do, right through to - its meant to be as you can cope. What other mothers are saying to me - its not going to happen to my child !

Anyway this has turned into an interesting thread - had a pretty horrible day yesterday that I may post about later if I can convince myself it won't upset or distress anyone!

take care
Cathy

JaneRA
Member

Re: Have many had secondaries after clear nodes?

I know where you're coming from Jenny and I know I only share my most private thoughts with those I know and trust and certainly not in public cyber space. For me some of those most personal thoughts are shared with women with secondaries, women with primary breast cancer and a few non cancer friends. I think having contact buttons allows women in small groups to set up their own networks of private support..with those who they feel they have something in common. BCC forums have a bigger purpose and function.

The 'vultures' descending' thing is a tricky one and I don't entirely agree with this view. I like people to to say they are thinking of me at bad times..or if I don't then I don't post publicly. What I do think is fascinating though is why we sometimes get that phenomenon of the Princess Diana death (and no one ever says then 'oh stop being so dramatic' or 'this is depresing') We turn those who have died into contemporary heroes yet answer a factual question about secondaries and all hell lets rip. Why this mismatch?

Jane

Jennywren
Member

Re: Have many had secondaries after clear nodes?

As I said before, I would like a private area for us with secondaries to discuss some of our more personal thoughts. This is not to say I would not use a forum as we have presently. Much of the information and inspiration posted here, would remain here for whomever wished to read it, but I do know, from three years experience now, that there are things we would wish to share with each other that we do not wish to be public. The fact that many of us are involved in other private groups bears testament to this fact. This is also borne out by the fact that this BCC secondary forum is much used and extremely dynamic. We continue to post here, just save some of our more intimate thoughts to share only with others who will understand the sometimes terribly difficult issues affecting us (which many describe as 'scary' or 'depressing'). Long ago, a former user of these boards once described 'vultures descending' on this forum when news of a death or serious decline was posted on this forum. I know what she meant about not wanting a lot of 'thinking of yous' at such a time but preferring a quiet and private area to post as much or little as she chose. Anything of relevance would still appear on this forum as many of us know the value of such shared information and experience. For me, this site was a lifeline when I was diagnosed (stage IV from the start) and I would always wish to share what I can with newcomers.

Jenny

JaneRA
Member

Re: Have many had secondaries after clear nodes?

Hi Katie61

I don't think you should feel guilty at all about this starting this thread. You asked a perfectly reasonable question..an interesting question...an inportant question...a serious question..if this can't be done on a breast cancer forum I don't know where it can be done! Sometimes threads with serious and hard information go 'wrong' because some people can't bear to read hard stuff. It happened recently on another thread (can't remember where but wasn't secondaries) where a woman asked about the likelihood of a second primary in the 'other' breast. Another serious, interesting, important question which several of us tried to answer thoughtfully and seriously...and then wham bam suddenly the thread was about 'veterans' who dominated the forums, who had rare and aggressive cancers, and whose views by implication probably couldn't be taken seriously. (we're bitter twisted old things) I couldn't help but notice that this happened not long after I'd mentioned that metastatic recurrence is commoner than a second primary.

Nothing beats the time that someone called me the fifth horse of the apocalypse in the Dew Drop Inn(or rather said that their husband called me that!)..I think on that ocasion I'd mentioned that women sometimes die of breast cancer.

An interesting phenomoenon of on line breast cancer life....lets keep the forums open so we can have these debates

Thanks for your good wishes for the Marsden...

Jane

nightowl
Member

Re: Have many had secondaries after clear nodes?

I do not have secondaries, at least not that I know of however I would not like this forum to be restricted to only women with secondaries as I find it very informative and reassuring to know that there are many women living for years with secondaries. I have found this forum very helpful and indeed 'inspirational' and I have not found it to be depressing at all, just sad sometimes, but I am the kind of person who likes to know as much as I can and I think we can all benefit from the experiences of people who frequently post here.

good luck at Marsden tomorrow Jane

Katie61
Member

Re: Have many had secondaries after clear nodes?

Hi all,
Just did that great 'late at night' thing and lost an entire post!

1. Jane - very, very best of luck tomorrow, will be thinking of you- you are GREAT!
2. I started this thread and felt very guilty about putting in the 'Seconadary' forum as I am not in that 'gang', as far as I know. But I would say this - being able to access this forum is far from depressing, it shows that life can go on after secondary dx and you ladies have made me feel that it wouldnt be the end of the world.
3. If the secondary forum was private , those of us with fears might not be able to ask you guys for advice.
4. If people reading this are finding it depressing, they need to master control of their computer/mouse and not go into secondary forums, or indeed breast cancer forums because you are going to find people with similar diagnosis to your own, who have not been lucky.

OK, rant over !!

Roberta
Member

Re: Have many had secondaries after clear nodes?

I very rarely post to the secondaries forum as I have always regarded this as an area for people with secondaries to communicate and still do. I do read it though not when I was first diagnosed as I think my emotions and fears could not initially handle it . It was only later in my treatment and after that I ventured into the forum and have greatly valued the experiences and information of people who post here. In some strange way it even lessened my fears on what my future might bring (I am a grade 3 stage 3 bc patient so at very high risk......... though I'm now almost 4 years on and feeling more positive). I suppose I also wanted to get to know some of you in case I joined the club.

On getting annoyed, I just want to say I also feel the same at the unwanted intrusions into this forum, but I think this is partly a problem with the way the current forums work. By default ALL the forums come up for view and it requires an action to change this. I have always thought that the 'hot topics' and 'secondaries' forums should be initially excluded.......... thereby ensuring that only people who really wish to read and participate, do so. If people actively read this and the hot topics forums they should expect for franker discussions and accept that these forums HAVE to be that way to provide a proper service.

And yes,,,,,,,I do and I'm sure many other people have their fingers crossed for a fruitful meeting for Jane tomorrow (without too much of a hangover I hope!).

Roberta
xx

cally2108
Member

Re: Have many had secondaries after clear nodes?

Hi
I too apologize if I upset anyone by saying I was scared by what I read. For a while I couldnt read anything , even a newspaper article about stats or anything to do with bc (not just on here) but I am scared by cancer (who isnt) and know how real and unpredictable it is.
I seek information but I dont get depressed but inspired as Jane has expressed in her post.

Cally x

ForumMember
Member

Re: Have many had secondaries after clear nodes?

Yes Katie, 'please allow me my fear and let me express my fear', a hard one for most of our nearest and dearest to endure as their inclination is to encourage us along which is great but does not allow us to express our fears.

We all, I am sure, are as positive as we can be, but at times we need to be real,but not always, it's not always how we want to be, but sometimes it's very important to say certain important and profound things and be allowed to be sad, to cry and to have someone bear that with us. It is a comfort to share our greatest fears with those we love and for them to come along side us and grieve with us about our feelings for our future.

Bottom line is we, none of us, know what is to become of us and in knowing that I hope that we all live life much more fully and we can gain some joy from that.

Maria

ForumMember
Member

Re: Have many had secondaries after clear nodes?

Judyw47

Just wanted to say hang on in there, its absolutely horrible to get to grips with and I know what you mean when you say you feel optimistic, because, lets face it, the statistics generally are great now for breast cancer survival. I was diagnosed with Inflammatory breast cancer 18 months ago, had chemo, mastectomy, (my father died suddenly the day before), and then I had radio followed by tamoxifen as I am 46yrs old. I have been told I will probably be OK and I'd like to go with that but I know what my chances are statistically.

However I am back at work managing 40 staff and just about to take temporary promotion managing 230 staff. I think what the hell I need to get on with life. None of us know what will happen, some perfectly seemingly heathy folk will keel over tomorrow with heart attacks and strokes, so take heart that you are being monitored and that although you may have problems you still have lots of chances, we still have lots of chances.

Slow down and enjoy life and you will get so much out of it, easy to say but seriously, my chances are not good with IBC and yet I have found how to continue somehow in this vein. Living in the moment seems to be the answer for me, don't look too far ahead but plan good things short terrm, a little holiday, a weekend with friends, a trip to the cinema, an outing with colleagues, whatever, not too long term.

Also you cannot underestimate what you with your experience can give to others,

Very best wishes

Maria xxxx

Jennywren
Member

Re: Have many had secondaries after clear nodes?

Hi,

I agree with many of the comments posted on this thread (hear hear Jakki) and have also been annoyed by some. Some points made may be 'scary' but they are real. Anyone can post what they like on this thread but do bear in mind that most of us here have been told those 'no cure', 'may be manageable' words'. Nothing is more scary than that.

There are few places we can go, even on the Internet, to discuss intimate and personal cancer related issues other than sites like this one and we have fought to improve it to suit everyone better. Other sites have been set up to in order to provide privacy - not simply to spare some from the scary stuff - but because we don't want to discuss these issues with the world at large. They are private. I would like an area on BCC which was private, but not at the expense of this forum. I am sure there is room for both to co-exist - I post on private sites and this one.

Jane - I hope you get the job, so to speak!

Jenny
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JaneRA
Member

Re: Have many had secondaries after clear nodes?

Hi Val and everyone

Yours wasn't one of the messages which annoyed me..you're not a nasty eavesdropper at all. I value your posts.

Actually I am someone who would argue very forcibly for this being an open forum for several reasons...firstly the distinction we all make between those with 'primaries' and those with secondaries' is actually not as clear cut as most of us think...I know this from my own experience of not technically having 'secondaries' but having an incurable regional recurrence...also there are just so many varieties of bc and of secondary bc that all is not in any case a 'level playing field.' I know there are women today being diagnosed with primary breast cancer who will 'overtake' many here and be dead within the year...while some on this forum will live for years with controlled and managed disease. I think knowledge and awareness of advanced breast cancer is something which everyone with any kind of breast cancer should be able to talk about and ask questions about if they want. There's a case for closed groups but I wouldn't want one on BCC.

I used this forum when I still 'only' had stage 3 disease because I found it informative and yes too that word 'inspiring' which I don't really like..but can't think of a better one... I have learned from so many women, some now dead, some still going strong, that it was possible to live well even if my worse fears became reality. I think those with secondaries are not some unique tribe apart...in many ways all of us with breast cancer are a continnuum...all of our fortunes could change at any time.

These arguments do occur from time ot time and I think often its because of fear...and yes it is b""" annoying...but maybe we should also all be a bit more bolshie about saying when we feel annoyed and angry...which is why it was just great to read your post Jakki...I thought it was just me feeling annoyed.

Off to prepare my questions for the man at the Marsden..I feel like I'm going for a job interview...

Jane

dawnhc
Member

Re: Have many had secondaries after clear nodes?

Horace you can block the categories you dont want to see. Go to Categories a the top then find the forum you want to block and click 'block category'. You can then unblock it if you want to have a look any time.

Dawn

daisypink
Member

Re: Have many had secondaries after clear nodes?

KatherineM -

No your comments did not upset me - thanks for asking - however i was saddened to read your family are questioning why you have mets when your nodes were clear and what have you done/not done.. i hope you explained the situation and that they havent upset you too much.

Take care

Jakki
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horace
Member

Re: Have many had secondaries after clear nodes?

Rather than a closed forum how about an 'opt in' forum?

horace
Member

Re: Have many had secondaries after clear nodes?

May I add this-I stupidly didnt realise this was on the secondaries forum! I do apologise profusely and sincerely for making a semi flippant remark about being depressed by the realisation that being node negative wasnt a wonderful thing at all.I am a reasonably intelligent person who is a little naieve about some aspects of bc.I dont usually contribute to the secondaries forum and feel that those who do should be able to discuss anything you need to.I now feel like a rather nasty eavesdropper.Exit Val[from this forum]I will check in future.Love and luck dear friends.xxxxxxxxxxx