Re staging, I’m one of those people who likes to understand as much as I can, it helps me cope. Other people are happier coping with the information they have to hand. Everyone is different. The first surgeon I saw wouldn’t answer any questions re staging, I had to draw every answer out of him. My lovely BC nurse then helped me see another surgeon (the one who ultimately did my op) and she was absolutely happy to explain the staging etc. I’m stage 3, grade 3. It was a big mother too.
Junash – if you had been stage 4 they'd have told you. I’m not sure if it would be a relief to find out if you are only 1 or 2 if you asked about it now, as you might be told 3, which might be scary.
Looking at the survival stats is a black hole to get sucked into, as everyone is different and there are so many factors to take into account it can be really difficult to be sure you are looking at the correct data. Which is no way to plan or live your future life. After my oncologist proved herself to be not so sympathetic or helpful I treated her to the “how long will I live?” question by way of revenge. This resulted in her slamming her pen down on the table in a fit of pique and then inputting my details into Adjuvantonline. I watched deliberately input a smaller tumour size than I had and then she quoted me some stats without any context. She then corrected the tumour size, saw the results change for the worse and clicked the programme shut quickly. As if I couldn’t see. She was not aware I had already registered for and used the system myself LOL. I sure hope I don't have to see her again too many times as I don't trust her one little bit now.
I was upset about my likely stats to begin with but only in dark moments does it get to me now. From work I know how stats can be manipulated and how hard it is to make them meaningful. What do they say “Lies, damn lies, and statistics”. Like Jingo_x has proved with her baby (wow by the way!), statistics are there to be defied!
Hi Junash, I wasn't given a stage just a grade which was 3. I worked out that the stage was 2b due to the size and the fact that it hasn't spread. I wasn't given any survival statistics at all they said I would get that after the treatment is over next March, which seems along time to wait to me. They also said they are very confident of the treatment working, so I just have to go with that.....
On the nail front I can't see why painting them dark will help and you would have to keep taking the polish off to check on the state of them but I will see what I can find out. My sister-in-law is a. Oncology nurse in the USA, so I will ask her tonight.
Julie - re staging after all my own experiences and research this is what I know - the staging relates to tumour size, aggressiveness and if it has spread. If it is in a certain number of the lymph nodes then you go on to be scanned thoroughly to check if there has been a spread to snother part of the body. Based on my initial pathology I was stage 3. My bone scan showed one single metastatsis in my sacrum and so for three weeks I had to deal with the fact that I was stage 4, but then another radiologist looked and said not sure, and another and another. They try really hard to get definitive answers because chemo isn't always the first option for patients who are stage 4 - sometimes it is more important to stabilise bone etc, but it isn't always possible to get a final answer and as it cant be biopsied I have to wait 12 months before they will scan me again to know.
I was obsessed with knowing exactly what stage I was but having had a few weeks of living with a stage 4 diagnosis I have now grown to enjoy the uncertainty more - I see it as my life line and have decided it doesn't matter so much to me now I just need to deal with what is in front of me and not down the line. I think for all these reasons sometimes our medical professionals don't try and give us a fixed label that we then research endlessly. I worked out my 5 year survival was 17% at one point, but it's not accurate because some bone drugs werent being used 5 years ago and also I am not scared of statistics as I accidentally got pregnant at 43 with my little bonus baby and apparently I only had 0.5% of that happening even if I had been trying!
All the scanning did result in them finding a different breast cancer in my other breast by the way so I now have the fancy pants title of 'synchronous, bilateral breast cancer' but apparently this doesn't have any bearing on my outcome!
Had first chemo this morning. All new and strange. Have gone home with lots of different anti-sickness drugs, but currently feeling ok. Even had a walk in the sunshine. I am following all these posts about nails and had not realised that there was such an issue - does anyone know why painting them a dark colour helps? I don't normally use nail polish and this is something that I had not thought about at all!
Thanks Lainie, I’ve never heard of folliclitis so that’s really useful to know. If you have stubble now, it must still be growing? How does that work? My head is itchy, so getting a #1 or #2 should let me get at it with some moisturiser. Bettypoppitt my hair at that length will not only be shorter than my OHs but it will be greyer than his – I haven’t bothered with my roots for weeks now so all the colour will go. A truly scary prospect.
Welcome Robynv. I’m on 3 weekly, but on FEC right now as I think some others are. Sorry you’ve been so ill – some people are on the magical Emend – its usually something that has to be ordered specially, so if you want to ask them to let you have that next time you should get onto them well ahead of your next appointment.
Thanks for your quick response AMDriver - black spots on 2nd FEC huh? That makes me doubly worried now! Sigh
Anx56 - some of the ladies on here who are ahead of me have said day 14-18 for hair starting to come out and here I am on day 18 and yes its starting to come out good style now. Mine is thick to start with so I think I'll get a couple days more (including night out with the girls tonight - yay) but will prob be shaving it off at the weekend rather than watch it go bit by bit. I do intend to lighten the mood by having my OH shave a Mohican into it before he takes the lot off.
Ladies who already had shaving parties, did you take it down to skin, or did you take it down to a number 1 or 2? I'm not sure I trust my other half (or myself even) to take it down to the skin with no guard on the trimmer. Ouch.
Hi anx56 and welcome to the group, glad to hear round one is going ok. I am on day 4 of my second FEC and was under the assumption that each cycle would get worse but have to say I have been slightly better than round 1 - although my sleep is rubbish this time around so I am missing that!
I still seem to have most of my hair, losing some every day but quite evenly so even if it does come out I feel I have givenmyself a few weeks to get used to the idea.
AMdriver no problems with nails but I was advised to keep roomy shoes on to avoid pressure on the nails so I have been living in trainers and walking shoes. Toenails are a bit tender, but I am moisturing feet and nails every day too (and everywhere else really) with Boots dermacare cream - comes in a pot like E45 but has almond oil and lanolin in so a bit thicker.
take care all xx
Hi everyone! I began my chemo last friday so Im day 7 today! Been meaning to hop on thread all week, but better late than never I suppose! I hope you are all managing and we can share experieces, have found the forums to be a life saver! Been okay had a few wobbles and some low days but cos feeling little better I'm trying to put it behind me! Has anyone experienced bad headaches? Also do the side affects get worse with every cycle?
With the nail situationI heard that a drip of tea tree oil under the nail tip every night helps, I also heard wearing the cotton gloves helps but be careful as they can harbour any infections. As you say Linzz its worth trying anything in the hope it might work?
Can anyone tell me what day you start to experience the hair loss?
Love and hugs to you all Xx
No I'm on the second lot of FEC, don't get to Doxataxel until Decemter. It wierd both the spots are in identical places on the tonenails. My daughter bought me some Sally Hansen Vitamin £E nail and cuticle oil which I used on my hands so have now started to put it on my toes - may be too late. I hadn't heard about cold mitts/boots so wil take at look at that.
Betty I will definitely take my meds as they worked for me last time and it was drummed into me - take them whether you are feeling ill or not. Hope you are feeling better.
Is it doxataxel you're getting at the mo? My nails are OK but I'm on FEC still, and I thought the taxane is the one that can mess with them most. I am really freaked out by the prospect of nail problems or loss and am going to enquire about cold mitts/boots at my unit. They apparently work like the cold cap, but for your fingers and toes. They are used a lot in France and Canada I believe but not so much in the UK. If my unit doesn't do them I think I am going to create some DIY versions. Will look REALLY daft but I don't care
Also, I have been using Boots nail and cuticle oil since chemo started but have now bought some OnicoLife drops off the internet (some people seem to swear by them) which I will switch to before I start on the doxataxel. Might not make the blindest bit of difference but I figure it won't harm so is worth the try.
Hi snapper58, so sorry that it is so up in the air for you. I dreaded them saying I couldn't have my second chemo yesterday because I was hospitalized last week, but fortunately that didn't happen.
Had a terrible nights sleep but doing ok on the sickness and nausea front so far - fingers crossed it stays that way. My hair is still coming out but if you met me for the first time you wouldn't know, but I have developed black spots on the toenails of both my big toes....anyone else have that?
I hope everyone is feeling better today and good luck to those who have a session today, thinking of you all. X
Thanks for the support Guys, I had a call this afternoon to cancel chemo again and need to see oncologist on the 6th Nov and if she thinks I'm ok then I will have chemo same day. I kept asking if my chemo would be ok and they said yes it'll be fine, I wished they'd speak to each other and I also want to know where the clot came from; ie mastectomy or chemo.
When I see the onc I'm ready with my questions but I know they're the specialists, I can se you are thinking of leaving the last chemo out but I am taking it all when they make their minds up.
Where do you book this feel good thing that you are all talking about, I need some therapy at the moment to keep me chin up. Sorry for those who's CC hasn't worked but plenty of other options to go for, I have also had people say you'll be fine and it'll soon be over. They ain't gotta a clue what it's like with all the appointments and the wondering we go through, they seem to think everyone is the same and until you are in this situation they won't understand. As you can tell hospital have got my back up with their call, sorry for the moan but hope everyone is doing well. Snapper58 xx
Oh my goodness snapper58 that must have been terrifying. So glad you're OK.
It's so useful to hear how people are affected by these treatments - hearing everyone's stories really focusses your attention on that dry list of "might happen" things in a booklet. Makes it real, even for me who am still feeling like this isn't really happening.
Lainie - how did I forget that only the Bru will Do !? I will be getting a supply in now
Oh snapper58 what a nightmare, well done for spotting the signs and getting treated quickly though, scary times for you I bet.
Now your treatment schedule has all changed as well so that must be frustrating.
i hope you are managing to keep your chin up - not easy I know.
Bettypoppit hope you are feleing better today too x
Forgot to say that I left the rest of my hair at the hospital, that includes the lady flower garden and all the hair except my legs and eyes have gone. Snapper
Hi Everyone, Sorry I haven't been in touch but I was rushed into hospital last Wednesday with a blood clot in my lung, little bit scarey but I am back home know and on top of everything else I have to inject myself each day for six months. I missed my chemo and are due to have this on Friday, I'll have to read through all the other coments to see what's been happening with all of you. I hope you are all doing well and any newcomers that have joined this thread, with all the medication at the moment my appetite is going downhill and have been given somthing to help build me up before Friday. Love and best wishes to all. Snapper58
Hi AMDriver still not losing much hair and sore scalp has disappeared. Did the cold cap again yesterday and the nurse did it differently so my head was much wetter and colder plus I ended up wearing it for a total of 5 hours so my head was completely numb. Had a sore eyebrow for a couple of days too so waiting for that to fall off now!
re the drinks thing I am drinking pints of Rocks Elderflower squash mixed with fizzy water, also Fanta Orange zero and loads of cups of tea. Also have Pukka Lemongrass and Ginger Tea when I am feeling queasy. Can't face much water
I am doing LGFB at The Rose Centre St George's next Tues 4th Nov - anyone else happen to be signed up for that?
I hope everyone who has had a bad start to the week is feeling better. Day 2 of my second FEC has been good, but from my chemo diary I can see that day 3 might be more of a challenge!
Take care ladies xx