Hi all,
I’m thinking I may offend someone with this post and that is really not my intention at all. So pleeeaaasssse, don’t take it the wrong way…
I just wish that we could all spare a thought for those of us (me included) with positive lymph node involvement. I’m not saying that this is not happening, but I have read so many posts lately that have said things like ‘I think you should be grateful your nodes were clear’, ‘Phew what a relief, no nodes involved’, ‘no node involvement, thank god!!’.
Yes, it is a wonderful thing if you don’t have nodes involved but also, it not the end of the world if you do. Far from in fact! I am always very pleased to hear when people get good results, god knows we all could use some good news. But I worry what harm posts saying negative things about lymph node involvement could do to someone newly diagnosed.
Having no nodes involved is great news, but equally, having nodes involved doesn’t have to mean bad news. I am just trying to redress the balance a little as posts saying ‘phew, what a relief, nodes clear!’ may do little to help someone who has just found out they have +nodes.
Sorry to go on and please don’t get all angry with me. I mean this is the nicest possible way. I’ve been posting on here for ages and I hope you will all know by now that I’m not intending to be nasty. Its just the more I see these posts the more I wish someone would think of the possible impact it may have on others,
Hope we can still be friends!!
Kelly
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Hi Kelly
Absolutely agree with you. I hate the hierarchies we create. I had 23/25 nodes with cancer at primary diagnosis and used to feel as you do.
I think we are all on a continuum of uncertainty with whatever kind of cancer we have, but some of us draw shorter straws early on. I’ve been knocking around these boards for 3 plus years now and my repertoire of good news/not so good/and bad stories grows.
It doesn’t stop at the node competition though. Women with primaries do it all the time about scan results: ‘phew what a relief my CT scan was OK’…but 10% of those diagnosed with primaries also have secondary spread at diagnosis and many more go on to get recurrences and secondary spread. We create divisions amongst ourselves and unspoken hierarchies of ‘good’ and ‘bad’ which in the long run don’t help any of us.
For the record I lived well with my 23 nodes (well not exactly with them if you get my drift) for 3.5 years after diagnosis. Now I’m in the next bit of the ‘journey’ with a regional recurrence which is the ‘good end of stage 4’ so sitting on a funny kind of wall looking back at my primary days.
very best wishes with your treatment kelley and keep the debates coming.
Jane
Hi Kelly
Brilliant post…and like Jane i agree entirely…
I am 1 year on,finished all treatment and had 9/9 nodes possitive…i also have a regional spread/recurrence…
I have learned so much in this last year,and when i first come on this forum i didnt know what node possitive really meant!but i soon found out with all the ‘phewing and thanking god’ when they appeared to be clear,and to put it mildly it scared the pants off me!! thought i had no chance!..
Since then,i have asked about and done a bit of homework and realised although its better to have them clear,you can still have a good outcome…and it is very common…
All the best with the rest of your treatment Kelly…and thanks for this post,its something ive often thought,but not been able to put into words…
Julie
Thanks for the post Kelly
I too have positive lymph node involvement but am trying to stay in a good frame of mind about it
It is hard to put things into words but think sometimes it has to be done
xxxJulie
Hi Kelly
I agree with you too, but never been brave enough to comment. I had positive nodes and even had someone who has had BC say to me "as long as it hasn’t spread to your nodes’ before I had the chance to tell them. I have had excellant results from chemo before surgery and my prognosis has improved dramatically so I would like to believe you can have a good outcome after positive nodes.Unfortunately I think this is always going to happen on a site like this because there will always be people celebrating good news whilst others aren’t so fortunate but if everyone could try to be sensitive to others it would help.Best wishes Kelly
Lisa x
Totally agree with the post - we need to be sensitive to each other … I feel the same regarding the issue of secondaries … The bonus from these forums is to give us a lift and advice and sometimes our comments (unwittingly) can do the reverse…
PS - I haven’t had my surgery yet, so don’t know about nodes … but it shouldn’t matter whether we are +ve/-ve nodes/primary or secondary involvement - we simply need to sensitively support each other…The divisions should not be created - we are primarily connected by breast cancer and the divisions should not be there.
Well said.
Heather
x
I couldn’t agree more. When I was at the hospital waiting to go and see my oncologist for the first time after my mastectomy (2/7 nodes positive), (nedless to say scared out of my wits) knowing I had to have chemo and rads, I met a lady who was having her lumpectomy at the same time as I was in, and guess what she said when I told her I had to have chemo and rads, ‘Oh your’s has spread has it, thank goodness mine hasn’t, they caught mine early’!! And the look on her face said it all ’ not much chance for you then’ or that’s how I interpreted it! Needless to say I could have said a few choice words, but bit my tongue!
Well done Kelly for posting your thoughts!
Love and hugs to all, Jean xxx
So glad you put this, I am sure that when folk say this they have no intention of scaring us with positive nodes. When I read the Phewwws and thank gods I feel really frightened as if their onc has said something that mine daren’t say to me. Also I have this about the her 2 + status loads of thank gods there when folk tested negative. Quite a few have said that they have been told that it is very good news that they are her2 negative. Not moaning as there are a few on here who haven’t got ongoing treatment due to triple negative. I am not daft and know that any of us could fall on either side of the fence, but need hope. This post needs putting on every few weeks to address this problem as newly diagnosed will keep saying it. Yes, it’s alright to say no nodes involved but leave out the Phewws and thank gods…, Love to everyone Eileen
Hi Kelly,
As a person waiting to have surgery I agree with all that you say. My lymph nodes look swollen on ultra sound but I will not know why they are swollen until after my operation.Either way I know I have breast cancer and it needs to be treated. I maybe niave but aren’t we all in the same boat? All of us will have to be treated and each of us will respond or be supported in different ways and lymph node involvement is only part of a very complex picture. Maybe it is human nature to find comfort or reasurrance in other people’s misfortune, but I think that it is dangerous game to play because anyone of us maybe the ‘other person’ in the future.
By the way I am new to the group and I have had so much support already - so thanks to everyone who has replied to my posts
xxx
Hiya Kelly
You have put this over so well. I have felt exactly the same but more so about the Her2+ status.
Well done.
Linda xx
Thanks so much for this post - I have felt exactly the same, like I was in some horrible bad news club that everyone else seemed to know was terrible apart from me. your positive posts really cheer me up kelly, and others
xx
Hi Princess
I am N0, and I think I may have said something along those lines in my very first post here, but honest to god I didn’t mean to upset anyone, and I can see how it might be percieved. So apologies for that, it’s certainly not what I have put in subsequent posts. I agree with HeatherLou above, we are united by breast cancer that is the most important thing.
The fact is, is that N0 does not mean you are out of the woods by any means, so people trumpeting the fact should be a little circumspect. Lymph node involvement is extremely common - all cancer has the ability to move, that’s why we have chemo to mop up the b*stard cells left behind !!! I can’t believe the cheek of the woman in Daisies’ story, it just shows you how insensitive people are.
It reminds me of a text my husband got a text from a woman colleague when I was diagnosed saying ‘I was one of the lucky ones who didn’t need chemo or rads ten years ago.’ Subsequently, we found out the silly cow had had a benign lump removed in her twenties!!!
love
Fuschia
xxxxxx
I too am N0, I do feel thankful (I’m sorry if that offends any of you)
It’s not all been plain sailing for me, I specifically wanted a WLE and it was agreed that unless chemo did not work, thats what I would have - well it did work 100%, so much so that I could not have WLE as I really really wished, I had to get a radical mastectomy (god knows why). So I feel very much the same when I see the many ladies posting on here at the moment, who get the same result yet still get the WLE after chemo.
So I think it’s all a bit of give and take, we all have our problems and we all know there are loads of ladies out there who are an awful lot worse of than us espceially those with mets.
Lynn x
The difference between what your upset is though Lynn and the node positive girls, is that there is an implication about prognosis when saying ‘phew I’m N0!’ when writing posts.
Hi there,
I’m new here as well and posted today that I was happy that a girl’s lymph nodes were clear. All I was trying to do was help her to stay positive.
I’m so sorry if that has caused offence, in no way whatsoever was I trying to cause anyone any upset. We’re all on the same rollercoaster and I was not trying to say that having lymph node involvement is worse than having none, because I firmly do not believe that, there are so many other factors to take into account.
Please accept my apologies.
Take care
Well,
I guess I’ve unwittingly opened up a whole can of worms!! I’m very glad my post has provoked such a response though and I’m really really pleased that no one seems to have taken offence, phew!!! Its awesome that you have all said how you’ve been thinking similar things and how supportive you’ve all been. Nice one xx
Jane - I knew I’d get a response from you! LOL!! I know you love a good debate (I mean that in the nicest poss way!).You are quite right in all you say and you raise an interesting point when you mention how it doesn;t stop at a ‘node competition’. Many thnaks for your informative response to my post.
Julie (linros) - Thanks, I’m really glad my post helped!! I know what you mean about having the pants scared off you in the early days after diagnosis with the ‘Phews!’.
Julie (jools) - Keep that good frame of mind and stay strong.
Lisa - I’m really glad your chemo has gone well and the future looks bright. Keep smiling x
Heatherlou - Well said yourself! You have raised a really good point re:secondaries, awesome!
Jean - Good on 'ya for biting your tongue after that horrid woman’s comments, I couldn’t have!!
Eileen - I too have previously felt like my onc was keeping something from me and was just ‘shielding’ me from the truth! You raise a good point about those of us that are HER2+. I had read so many posts about peoples relief at being HER2- than when I was told I was + I thought that was tantamount to a death sentence!! How wrong I was!
Chatterbox - We absolutely are all in the same boat, you’re quite right. I wish you well with your surgery (I’ve prob said that already on a previous post but it won’t hurt to say it again!).
Babycham - awesome name!! ‘Ditto’ re: the HER2+ status.
Lizalou - I’m glad I’ve cheered you up with my posts, thats really nice to hear. What a lovely thing to say, thank you v.much.
Fuschia - You absolutely haven’t upset anyone, I’m just trying to go a little way toward redressing the balance for the newbies.
Lynn - You’re absolutely right, give and take is the order of the day.
Thanks again for all your responses, you’ve been amazing. Please don’t lets stop rejoicing in our good news, lets just take a little time to think who maybe reading our posts and what effect words such as ‘phew’ and ‘hurrah’ may have on them.
Keep the responses coming (only if they’re nice!! Ha ha, only joking!) Or am I??..
Take care and I wish you all well as we continue on this journey together,
Kelly
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Hiya veggiebean,
Please don’t be put off from using this site for fear of offending anyone, we’re made of Kevlar here!! Your apologies are not needed honestly. It wasn’t a post from any one person in particular that caused me to write what I did, it was just an accumulation and I felt I really had to redress the balance a little.
Take care and please don’t let it put you off responding to people in future,
Kelly
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Excellent post. We are all here to support one another and not to scare each other senseless. I have node involvement 6/13 and a grade three tumour. My surgeon said to me when we were discussing prognosis that often the complicated ones like mine do well because everything gets thrown at them , I am really relieved I got chemo/ A couple of up beat stories of node involvement, when I was first diagnosis my BCN said they had just had someone in for their 5 year check with 19 nodes involved and she was NED and I also met a woman in clinic with 13 involved and four and a half years down the line she was NED. No one knows what is round the corner, but we are all in this club together and need to be there for one another. Also we need to keep up the good stories as it gives us all hope!
Hi Geraldine,
well said! The upbeat stories about node involvement are great, just one thing though…what does NED stand for??? I know I’m probabaly being really dim! I’m guessing its no … detected. Been wracking my brains but honestly can’t think what the E could stand for,
Please put me out of my misery!!!
Cheers,
Kelly
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