sgl-that very frightened feeling is horrible-hope you managed to get some sleep-do ring the secretary-don’t try and be brave-tell her how scared you are-good luck with it-persevere for more info -stella x
Thanks for your supportive message Ninja, I am so sorry that you are having to have extra chemo, I am not surprised you are peed off.
Ethlydsyl I have rung up the secretary in tears this morning and she is going to see if she can sort out an appointment for me on Friday afternoon. Thanks for your support.
SGL xx
Same thoughts from me. You are having such a tough time and when things are not clear its even harder. I had 3 months of investigations with things changing all the time, and no one BCN either, just whoever was available. The fear is chilling but just keep reading the good news stories on here, there are lots. At the moment the girl in my office who had a terrible prognosis 7 years ago is sitting laughing away, living her life, and doing just fine. She’s been my ‘Kylie’.
I had to do so much of the finding out, calling around, questioning, reading etc myself I wore myself out but after months I am almost at a point of being able to move on ‘a bit’, and hope you will be too.
I liked the comment that some people get from their docs - ‘give me a year of your life and I’ll give you the rest of yours in return’.
Take care and keep sharing your wobbly moments.
S
X
Hi SGL,
Just to add my support really.
I had something similar in as much that after my op they told me that they’d found a ‘mass’ that they weren’t expecting.
'DONT PANIC MR MANNERING!!!"
The surgeon didn’t seem bothered, she only told me because i asked why the surgery had taken longer than expected. (other things too but nothing i panicked about).
So i needed to find a way to get my head around this, which was: whatever the mass was it had been there all along -i’d just be unaware of it. It had now gone. I couldn’t change anything, nothing had actually changed just my knowledge.
I know this isn’t the same situation as you but you might be able to apply some of the same knoweledge. Could you see it as a good thing that they’ve said it’s something else? - that they’ve worked it out -and so can now use the appropriate weapons against it.
As for not being you - you will be. It’s difficult to imagine when your in the thick of it as everything stops and no future plans can be made due to the restrictions of the treatment. Speaking for myself, i’m determined to be me. I haven’t gone thru’ dx, biopsy, chemo, nasty jabs, snb, mx, axilla clearance, recon (so far)+ rads and Tam (to come) just to sit and feel sad. I’ve done all of that to be alive, i AM alive and so i’m going to LIVE!!! To THE MAX and BC can F off, it’s had a year of my life and that’s more than enough.
Take Care SG, you will get thru’ this, you really, really will.
xxxx
Hi hun I know what you mean & your not moaning your expressing what alot of us feel, Ive been feeling very on edge this week & all those horrid paranoid thoughts invaiding my head again, Ill find I will be ok again in a few days but I call this my ‘little spot’ where for a few days although im getting on im finding im not sleeping so good the BC is the 1st thing that pops into my head when I wake then comes the ‘questioning all the little aches & pains’ and we tend to keep this to ourselves my 2nd eldest son caught me prodding my good boob yesterday & said pack it in mum 
? I made an excuse that I was adjusting my bra but they cant understand those gremlins that invaid our thoughts only we can WE ‘get it’ because we got it. From what ive read over the months here it never completely leaves us BUT it does get better with time & your just starting out with treatment & it is like a big roller coaster. Don’t ever be sorry to express those fears thats what this place is for
I hope you’ll be feeling bit better soon
HUGS
Mekala xx
Sheil Mekalor and SCACO, thank you so much for your posts, it really does help having you lovely ladies to talk too when I am having a wobble. Its the Her2 positive that has really really thrown me. Since I have found out that I am that, all I keep reading is about how aggressive it is and how there are more deaths and secondaries from a diagnosis with this. And now I am thinking I have vascular invasion, my mind is just going into over drive.
Thanks again for your support, it means alot.
xxx
Hi SGL,
Please, please don’t worry about being Her2 positive. A few years ago, before herceptin became available for primary BC, it wasn’t good news as it is a more aggressive cancer. However, if you have herceptin, the prognosis is now very similar to being Her2 negative.
I understand that you are in a difficult place right now, your life has been turned upside-down, and you are very scared. Please take it from me, that there is life after BC. Things never return to whatever was normal before dx, but you find a new ‘normal’.
I was dx in Feb 2007 aged 44, I had a mx, followed by 4 x FEC & 4 x Tax, rads, herceptin and I’m still taking tamoxifen. So I know what a long haul it is. I have since had a delayed recon (2010).
My life has changed since 2007. Yes I have my down days when I am scared it will come back, but mostly that idea is far from my mind. I now prioritise time with family & friends, and time for myself. I no longer put off doing things I want to do to that mythical time in the future when I will have more time - I find the time to do it now. I find myself smiling just for the sheer joy of being alive.
xx
your welcome sweetie & I understand the HER2 + bit im Triple negative & when I was 1st diagnosed I was ready to just throw my hands in the air & say oh well im a gonna ! what my onc said to me is like with the HER2 & TN usually being grade 3… it CAN be aggressive, I too know women with HER2+++ that had node involvement & big tumours yet are doing really well years on so too with the triple negative, how I see it is we are all biologically different so what may have turned out to be bad for one will be ok for another & a bunch of women with the same cancer will all be different. I found that when the TN thingy plagues my head I see it as a little demon & visualise myself with my hands round its throat strangling it HAHAHA it helps me smile 
Get angry with it if that helps
HUGS
Mekala xx
Hey SGL
Remember you have CLEAR NODES!!
You had lumps but now they are GONE!!
May not be anything else -but IF there is it will be wiped out by the chemotherapy and radiotherapy.
You will always be YOU and will be loved just the same.
Love and hugs to you x
Hi SGL
just wanted to sent some hugs, and say that I can’t imagine getting through this without down days, I think we all must, from time to time. Its horrible and frightening as you go through the ‘system’ and find out new things that aren’t good - its just rocks you off balance a bit. I always have dips when new stuff happens. You will start to feel better and you are always YOU, but sometimes you are going to be scared and need a little support, which I know you deserve, having read some of your postings.
be kind to yourself, you will come through this hon and you will feel strong again.
this is the place to share your difficulties - I used to feel that cancerville was a very lonely place, but this forum has been a godsend - not least because of lovely supportive people like you
xxxmon
Dear SGL,
You are allowed to have down days without losing your inspirational, officially brave and pink and sparkly status. And you are all of that. Whether that makes you giggle or not.
Hope you are having something delicious to eat and drink tonight and someone who makes you laugh to keep you company-on the phone if not right there?
SGL, I send you a warm cuddle and a big smile. I too have had some very dark days but they do end and life goes on. This site has been a godsend and it is good to put your feelings in writing cos it sort of frees you, if you know what I mean. I am nearly through with chemo and that was hard to take. I so nearly gave up but the girls here are right and with the knowledge that they were there cheering me on and supporting. We can fight this cos we are “lucky” it was caught in time. Chris x
Awwwww ladies, thank you so much for your lovely supportive posts, you have really put a smile on my face.
I am seeing a phsycologist tomorrow at the Marsden so hope that talking about my fears and thoughts might help.
I am also hoping to get an appointment with someone from the oncology team on Friday to try and get to the bottom of all of this.
xxxx
Hi SGL,
I’m a great companion at patient appointments (aka interrogator of medical professionals) but am useless at performing that role effectively when I’m the patient. So I employ a couple of techniques: 2 copies of a list of things I want them to be aware of & my questions (1 for them to work through & 1 for me to write their responses on). I also enable the sound recorder on my mobile phone & record the conversation so I can listen again if I need to - I’m sure they wouldn’t mind if you did the same, after all, they’re familiar with ‘chemo brain’ being a SE. 
Hope your session today went well & good wishes for tomorrow.
Hi SGL
If it helps, I am a vascular invasion person who has just celebrated 7 years since my original operation. (I also had lymph node involvement , and ‘extra nodal’ spread). Obviously cells must have spread through my system, but so far no evidence at all that they are still there!
Like Beardie, I didn’t even know about the VI until later when I read a report. I think it’s really quite common and they don’t treat it as a crucial factor.
all the best
Sarah
Why is that ? surely vascular invasion is just as important as lymph node involvement.
Sarah so good to hear you are doing so well xx
I must admit Beardie I have been told from the start that vascular is as important as the nodes as its the only other way the cancer cells can get around to the other organs.
Thats brilliant news Sarah, I hope you have many many more years of being well.
Gemini what a brilliant idea, I am going back to see them at the hospital tomorrow afternoon, and I will use my phone to record the consulation. Thank you for that.