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Feels pretty down :-(

36 REPLIES 36
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Re: Feels pretty down :-(

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.

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Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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.

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Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

Lavenderlassie
Member

Re: Feels pretty down :-(

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?

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Re: Feels pretty down :-(

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

ragamuffin
Member

Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

RoadRunner
Member

Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

sheil
Member

Re: Feels pretty down :-(

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

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Re: Feels pretty down :-(

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

ethlydsyl
Member

Re: Feels pretty down :-(

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

Ninja
Member

Re: Feels pretty down :-(

SGL - have a big from me, too.
The only time I have ever been frightened and shaking with fear was my first appt with the Oncy and first chemo. The whole chemo thing scared me to death, right up to the second session when I knew then that it was doable and that I could get through it.

I have a BCN who is attached to the surgeon and who goes to all my MD meetings. I can ring her if I have any questions but have only done so once when I got a letter about them finally finding my primary tumour and it had a typo in it.

At the Oncy appts, it is whichever of the chemo nurses is on the rota to go. But that does mean that I have always seen them before in the chemo room and know them by their first name.

My diagnosis has changed a few times as they get more info from the histopathology; some of the tests take weeks to do. And my regime got changed from 6x 3 weekly to 8x 3-weekly. That really peed me off; it should have been my last one today.

Think of it as they are finding out more about you, and so they are constantly changing their ideas as they seek to cure you of that bliddy cancer. If they were rigid and stuck to their guns, it may seem easier to cope with but it wouldn't give you such a good prognosis.

Remember, you are STILL the person you were before, and you CAN be the person you have always wanted to be.

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Re: Feels pretty down :-(

I must admit, I dont really have one partcular bcn, I think there are three and its whoever is available at the time. I think the fact that a few times now I have been given conflicting information and I am totally confused. There was not a BCN yesterday.

I only found out I was her2positive through the ladies on here!! I was told I was having herceptin and chemo, but not why. When I posted on here I was told that I was her2positive because of the herceptin. I actually rang one of the bcns up and said am I her2pos and she said yes! I wonder when they would have told me. And now finding out I could have vascular has totally thrown me. I am going to ring the secretary and ask to see him again and that might make me feel more at ease as at the moment I am feeling very frightened.

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Re: Feels pretty down :-(

It wouldn't hurt to ask, would it?
I don't imagine you could concentrate very well at all under the circumstances
Or speak to your breast care nurse and maybe she could talk things through with you, mine is fantastic at calming me down when I get into a panic about stuff ( although I am extremely lucky in that she is also one of my closest friends!)
lots of love x

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Re: Feels pretty down :-(

Hi QUORT, I always take a couple of people with me, and yesterday my friend came with me, but she had her six year old with her and he started to fidget so I asked her to take him out as I couldnt concentrate on what was being said. So I do kinda wish I had had someone else with me now, as I was being told really important things and I couldnt take it all in. I wonder if they would let me see the professor again if I asked, what do you think?

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Re: Feels pretty down :-(

Hi SG Lily
So very sorry that you are having such a bad time.
Did you have someone with you when you saw the oncologist? I have found at my appts that my OH and I often come away with totally different impressions of what was said re my diagnosis and prognosis.
Obviously I always hear the negative and focus on that...... do you think there is a chance that that could be the case with you?
.....and you absolutely will be yourself again in the future!!
Take care of yourself
E x

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Re: Feels pretty down :-(

Thank you O and L, I think you are probably right what he meant was just because they couldnt see one, doesnt mean there wasnt i guess. I am scared though it gets somewhere and starts before I start chemo and herceptin.

Cheshirecheese (I love your name) my tumours were only mms in size, one of 3mm and 2 of 1mm so thats why I am a bit confused as how they can say one thing and then another. Its so scary isnt it the whole thing. I think its the Hers2 positive thing that is really freaking me out, as I only recently found that out too. So my mind is thinking that due to that the cells are on there way round the body looking for organs to invade.

Beardie, I am seeing a pyschologist on Thursday to try and sort my head out, and I might ask him if he thinks I should ask to see the professor of Oncology I saw a couple of weeks ago, and actually get the right information, as he was lovely and really put me at ease.

Thanks ladies for being there for me as usual.

Hugs xxxxx

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Re: Feels pretty down :-(

oldandlumpy

You are a STAR:::) you have made me feel better by reading your post.

Rose X

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Re: Feels pretty down :-(

Oh I know just how scared you feel. I also had vascular invasion mentioned on my path report but neither my breast consultant or oncologist mentioned it, i saw it written on my path report so i would never have known about it. I couldn't believe no one mentioned it. They did eventually explain it to me but i still think about it every day . My path report said very little about the vascular invasion so i don't know whether there was a little or a lot, i wish someone else could look at my path report or re-examin my tumor again so i could have more info.
Melxx

oldandlumpy
Member

Re: Feels pretty down :-(

perhaps what he meant was that although they have not found evidance that there is vascular invasion, they cannot be sure that there is some that they did not spot.

Its not as bad as it sounds though. those cancers that managed to grow their own blood supply might not have done it well enough to start throwing cells around. Even if a cell starting swimming around your body, it had to find somewhere appropriate to land. and then it has to manage to get through all the other hurdles before it becomes a proper tumor. In the meantime as horrid as the chemo is, it will be killing the little blighter before he has a chance to get hold.

I am not a medic, but that is my understanding of it.

You say you are not you, but you are. Your character always comes through in your posts. You are just you going through a shit time at the moment.

I hope tomorrow you are you feeling a little better

CheshireCheese
Member

Re: Feels pretty down :-(

Hi SGL
My oncologist said not to put too much emphasis on the presence of vascular invasion. She said that once a tumour gets to a certain size (mine was 2cm) it's almost guaranteed to have associated vascular invasion. Don't panic!
Sarah x

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Re: Feels pretty down :-(

I know it scary that is the worst part the not knowing!

Rose.

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Re: Feels pretty down :-(

I was told all along I have no vascular invasion, but the oncologist yesterday said they can't be sure, so now its thrown me into free fall as now I am imagining tiny cells going around my body via my blood vessels. I dont understand why they can say something then someone else say something totally different. Its so scary.

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Re: Feels pretty down :-(

Yeserday was my crumbled day i know how you feel.

Rose.x

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Re: Feels pretty down :-(

I think having down days is completely normal in our situation & seeing the onc just emphasises everything. I haven't got that far yet but i'm sure i'll be the same. You should post on here whenever u need to, that's what everyone is here for. I do hope u feel a little better about things tomorrow, it really is s**t isn't it but ur not alone. We're always here to listen xx

Everton_babe
Member

Re: Feels pretty down :-(

Hi
Wanted to add to the others and say thats what we are here for. Offload, rant,moan- this disease entitles us to all of these things.
But hope you find some peace of mind too.....
Take care
Cathie xx

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Re: Feels pretty down :-(

Thanks guys, I am strong most of the time, but today I have crumbled and its a horrible feeling.

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Re: Feels pretty down :-(

Try and be strong love.

Rose.

Jo_BCC
Member

Re: Feels pretty down :-(

Hi stargazerlily,

Sorry to hear things didn't go as you would have liked. If you need a good listening ear, don't forget the helpline staff are here for you, open in the morning at 9am, calls are free 0808 800 6000.

Take care.
Jo, Facilitator

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Re: Feels pretty down :-(

So sorry to read your post. Hopefully tomorrow will be a little bit better.

Guest user
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Feels pretty down :-(

I had my appointment with the oncologist yesterday and it didnt go as well as I had hoped, in that things were said that upset me. I am so fed up with cancer, and the realisation that I will never ever be me again and will always be looking over my shoulder and wondering if its going to return has really got to me.

I am sorry for moaning ladies. I have tried not to moan on here today as dont want to seem like an old misery, but I felt tonight I had to get this off my chest.

Thanks for reading this.

xxx