Yeah - understand that. I like living outside Edinburgh; close enough to visit, but far enough away to enjoy peace and quiet. Anyway - family home from their chores. Sent them to get hay & straw for the sheep. It’s annoying, all these wee jobs I can’t do myself at the moment. Also an excuse to get the house to myself for an hour! Was a pleasure to talk to you both, and I wish you both well. Take care xxx
Hi Roadrunner and Westside Sue…
Thanks for the replies…you know I am quite looking foward to chemo on Thursday…only because I want to feel like something is being done for any of those stray cells.
I have 2 kiddies…one 6yr old and one 17mnth old, I was a late starter with my kidneybeans as I am now 43. I am wondering how I will cope with my toddler if I feel rough but then again I may not be too bad. I am on the TACT2 trial and will be having accelerated chemo.
I know its maybe a bit wrong of me to do this but I look to see if people who do have lymph nodes involved are on here saying " all is great and I am a 20yr survivor " but then I reckon most of them are out and about and don’t need this website anymore…!! Hope is what I am looking for. My BC nurse said 2/13 nodes isn’t bad considering I was a grade 3 but part of me says why not 0/13…!!but thats just daft eh…!! cos I know we would all rather not any of this at all…no good wishing for a different result, that can’t be changed…just need to decide that I AM GOING TO LIVE TO 88…sounds a good number 88 !!
Right I am waffling now…need a drink of water take care ladies.
Take care ladies , nice chatting
P xxx
I had mast/recon and axillary clearance with 2/27 nodes positive. My understanding, which may not be up to much, is that chemo mops up any stray ‘seeds’ of cancer cells that may have escaped into the bloodstream and could cause a secondary cancer, radiotherapy will help prevent a local recurrence, and the tamoxifen is to stop any cancer cells from being able to ‘feed’ on oestrogen. Start 4 x Epi on 11 Apr then 4 months CMF.
Westside Sue, how far are you from Edinburgh? I love the city, apart from cycling up those hills, and the coast to the east especially. An old love, no longer in touch, moved west of the city a while ago, we’d spent some time up there beforehand. Love your name, we used to have an Irish pony with the same prefix! My hormonal kids are 21, 19 and 16, becoming less interested in horses, not liking having all the work while I’m recuperating. Two friends collected and stacked up a load of hay for me today, to the girls’ delight! My neighbours have Soay sheep who seem to live on fresh air, very energy efficient I think. All the best, Lyn xxx
well my nodes were completely clear but then I went for sampling rather than complete clearance. I did get the surgeon to explain it all though and I believe that the rest are clear, but then I came back as triple negative which I know bothers a lot of women who are given the same result but it hasn’t bothered me because of the research I’ve done and the fact that treatments are always improving.
A few nights ago I read a very interesting article about all the possible treatments available to triple neg people and I’ve also looked at all the trials going on and knowing that the stats are horribly out of date but things are always improving helps too so I’m treating it as results are a guideline and now it’s up to me to make my choices and live with them, fr me the emphasis is live with 
Oh I was grade 3 too BTW
Hi Paula
Just to give you some encouragement, I was grade 3, 2/15 nodes positive, vascular invasion at diagnosis, and have just passed the 4 year mark with no evidence of recurrence. I have always been aware there is a significant chance, but my team at the Royal Free were always very positive, so I took my cue from them. I read somewhere at the time about 80% 5-year survival, and when I told them this they said ‘oh no, much more than that these days’, so I didn’t push for anything more exact!
I have had a great 4 years, and feel optimistic about the future.
best wishes
Sarah
Hi Sarah
Thank you sooooooooooo much for that. I am planning on being optimistic and getting through this for many years yet.
Can I ask were you triple negative?
Thanks and enjoy
Paula x
dear Paula
I was ‘weakly positive’. is a small part of the tumour was +ve and the rest wasn’t. They put me on Tamoxifen because they said it was still worth it. I just did everything they told me - there didn’t really seem any other option but to just plough through all the treatment!
It wasn’t as bad as I had thought, and I was able to work and have fun even in the middle of chemo. Some people did get me down because they became extremely ‘tragic’ about it whereas I tried hard to enjoy all the good days with lots of small treats etc (maybe a bit naive, but it was my way of coping).
Sarah
Hi Sarah
Well its good they gave you it just to be sure and well worth it even if only slight +.
You know its because I dont want to know my prognosis but I sort of guess the way I have heard people speak is that of course as I have lymph nodes involved it far more risky and more serious. I just see the whole of BC being serious but sure as hell I am not going to let my results stop me carrying on. I can’t change them can I just have to go forward to do the best I can and make sure I get good treatment which we all should. !
I am already looking forward to booking a holiday somewhere for the end of year and having a spa day with my girlfriends who have managed to “stick around”. The others can gooooooooooo jump.!!
Right fighting talk over I am of for a cuppa…
Thanks again Sarah for giving me some more hope…!
x
Hi All!
Paula I was Grade 3 with 4 out of 13 nodes affected. First chemo yesterday - am ok. That was same day as you, wasn’t it? Are you on FEC-T? Pink pee is scary! Hope you are ok. Be careful with the spa day idea…because you have had lymph nodes removed you won’t be able to have massages for quite a while - toxins drain into your non existent lymphatic drainage system - you’ll get lymphomeda or whatever it’s called!
Lyn, I’m near Penicuik. Are you Edinburgh (ish)? I agree with your understanding re the role of chemo etc. I like the “mopping up” story . Much easier to do that then deal with established secondaries I think.
My understanding is that they give you chemo for a grade 3 cancer regardless of whether or not it’s affected the lymph nodes…but maybe that’s just around here.
Nice to speak with you all again, Sue x
Hi all
I thought you may find the information published by BCC on the subject of reducing the risk of lymphoedema helpful to read, you can read it via the link below:
breastcancercare.org.uk/docs/reducing_risk_of_lymphoedema_0.pdf
Hope you find it useful.
Best wishes
Lucy
Hi Sue
I had my first chemo on 27th and I am on Tact2 trial so on accelerated chemo. I had Epi so yes pink wee…lush huh !!!
Spa days…well I am looking at end of year, you know something to look forward to and plan ahead.!!
Glad you ok with your first chemo. Are you having 8 sessions and then rads?
I wish you well and hope you continue to be ok with the chemo.
Good luck
Paula x
Vertangie - i am too triple negative with nodes involved (1 out of 13) and can only find doom & gloom so where is the encouraging stuff - at 5.19 am (been up for 5 hours!) I need some positive internet bumf!!
x
lolabelle
I am triple negative and 2/13 nodes involved. Dont look at the doom and gloom, I asked my bc nurse about the triple negative and she said its not a new kind of bc, we only call it triple negative because we now know about HER2. If they didn’t know about that then would it be called a double negative? she said 10yrs ago there was only one hormone test…and they are now finding out more and more about BC so maybe in the future ours will be called a quadruple negative…ekkk.
So our triple negative has been about as long as bc has. I hope you get some sleep sometime.Take cake,
Are you being treated at East Surrey? You must be a local lady then?
P x
Hi everyone
Just seen your post about East Surrey - I had my surgery there and some chemo. Now having rads at Guildford.
Please take care, love
Anne x
Thanks Vertangie!! Paula/Anne I am local but being treated at the marsden sutton now for chemo as i have two babies (well 11 months old and 3 yrs old) and find sutton easier to get to than guidlford but i had two ops at east surrey under Mr Stacey Clear a couple of months ago. Haven;'t done the masectomy yet but that will be at the end no doubt…
I hate the thought of local or distant reoccurrence more than any other aspect of this goddamn illness. Losing my hair more today and HATE HATE HATE my new crop i had done yesterday in prep for it!!
Oh lolabelle I start chemo on Friday, Epi-CMF, and had planned to have my hair cut beforehand, but haven’t been able to take the plunge. May let my daughters have a chop at it tomorrow (they’re 16 and 21), they probably won’t get to look at their handiwork for long if it does fall out, though I’ll give the cold cap a go. Have already decided to cover all mirrors in my room, it’s crazy how significant this has become, I guess it’s that ‘badge’, the declaration of chemo, secret no more.
Sue, sorry I didn’t answer you - I’m in Cambridge but have a soft spot for Edinburgh, was house-hunting there 2 yrs ago but circumstances changed and I stayed here. Looked all along from S Queensferry to N Berwick, though I liked the details of a house in Carlops, my (then) partner wanted to be on the coast. Beautiful place, snow or shine! Lyn xx
Hi Lolabelle
I too had my surgery under Mr Stacey Clear - have two children 3 and 5. Travelling to Guildford is a bit of a pain but the staff are lovely. Managed to have most of my chemo at east surrey and they were lovely there to.
Nearly half way through rads.
I thought losing my hair woulf be awful but actually when the day came it was not too bad - got my husband to shave my head to a grade 1. Tried on my wig and hated it - so have spent the last few months in headscarfs which was not too bad. I am now at the stage of hair grwing back - grade 2 at present and since it has been back at a grade 1 have been going commando!!(so to speak). Have had loads of really good comments - although can not wait until it grows back.
Hope you are feeling well - and the chemo is doable.
I too have lymph node involvement - 12/29! (not bad considering I got told the lump was nothing to worry about!!- and then Oh looks like we caught it early!!!).
Please take care, love
Anne x
God Anne that is terrible although i was told it was 75% not breast cancer by the lovely Mr Stacey Clear (who i know is very well thought of and best in his game etc etc) and i went to Cafe Rouge down the rd i Reigate and was drinking champagne at 11am only to find out that actually it was cancer and its grade 3 triple negative and to say i was shocked was the understatement of the century! I am a crap driver at the best of times and the Marsden is quite near my mums (shes in Coulsdon) so it worked out well in the end. Mr Stacey Clear did my lumpectomy and sentinel node op and then further lymph nodes - hes a charming man but i wish i’d of pushed at the beginning as any ivolvemnet of nodes is not the ideal but onwards and upwards i guess!! Due to have rads at the marsden as well - its every day isn’t it?? god childcare situation coming up i feel…!
Yours does not sound much better. Yes I was told Stacey-Clear was excellent and I am very pleased with my surgery - had mastectomy and immediate LD reconstruction end Sept.
Yes, childcare is an issue - especially during the school hols and grandparents live 2 hours away. My diary is full of whose got who where and where to pick up and contact numbers. Yes I am afraid is everyday for rads - oh well short term issue hopefully long term gain!!!
Hope you chemo is going well? Keep in touch
Please take care, love
Anne x