Oh gosh, what a lot you’ve had to deal with. So sorry for your loss.
When I had surgery, I wasn’t given the option of immediate reconstruction due to needing radiotherapy. The words of my Consultant was you don’t want to fry your new boob!! She said I can be seen 12 months after radiotherapy and discuss diep surgery x
Thank you for your response. So yeah, this is really the crux of the issue, I’ll only find out if I need radiotherapy AFTER my surgery and the surgeon and oncologist can’t make their mind up if it’s likely or not…… argh! My surgeon seems to be fairly negative (also told me I have high chance of recurrence….. while oncologist is much more positive) and says I’ll likely need radiotherapy while oncologist says I likely won’t. But I don’t know what to do. Also I won’t have a nipple afterwards so a bit worried about it just looking odd. As I have post breastfeeding breast they are a lot more… natural than before and I don’t know if an implant would just look off
What a nightmare. My surgeon told me lumpectomy, no chemo and radiotherapy. I ended up with mastectomy, chemo, radiotherapy and will then have abemaciclib for 2 years and tamoxifen for 5 years. Things change so much don’t they. Hopefully they can make more of a plan or offer more advice before your surgery x
Did you say yours is triple negative too? Do you have any more information like tumour size / armpit involvement? I was initially told 4cm with a 1cm one next to it and one involved node. The surgeon wasn’t sure if I’d qualify for radiation but then CT scan showed it to be 5.8 or 5.9cm so I do qualify. She said she wasn’t sure of the benefit (if I get complete response from chemo otherwise it would be automatically recommended) but she’s willing to put me forward for it anyway and I’d rather have absolutely everything just in case. It’s interesting that others have been told not to have an implant before radiation - I was told if it gets damaged they can fix it afterwards.
Have you had a general anaesthetic / surgery before? How do you feel about having several procedures?
Evening all
@lmack95 so very sorry to hear about your dad. This is so hard for you on top of everything you’re already dealing with. And I’m so sorry your mother is unable to be a support for you. And then the miscommunication from the team- that is a HUGE “last straw” to suddenly be told there is more treatment ahead than you had managed to get your head around. I feel very angry at them on your behalf. They don’t seem to realise that sometimes we feel as though we manage to keep going only because we can see that light at the end of the tunnel, and then when it moves further away that just feels cruel. This happens when they delay chemo too, as has happened to you also, and I empathise with that one as I had 2.5 week delay over Xmas/ New year too due to cough and having to change that end date felt awful. (It didn’t seem to occur to them that it might be.)
Glad you’re getting lots of good advice here re thinking over your surgery decisions. I’m sure you’ll come to the right decision for you, but keep on talking on the forum, its so helpful.
@Kara lovely to hear from you again, how are you? Have you got the c diff under control yet?
I’ve been taking one day at a time here, Docetaxel still really kicking me, keep thinking side effects are easing and then they whack me right back. Saw oncologist yesterday though and he wants to give me 25% reduction in next dose. There is a chance that next one may be delayed again though, if neutros don’t improve,they are so low.
Love to all xxx
Good morning!
I have only had 4 infusions so far 2 x EC and 2 x Docetaxel. Two more to go, so in the grand scheme of things I am lucky it is relatively short. I have my penultimate session next week.
BUT has anyone else experienced the sensation of ‘hitting a wall’? I am so fatigued by the constant battering of my body now and the general erosion of my body and soul that I am on the point of begging my oncologist to stop.
I know I can’t. I know I have to just suck it up, but does anyone else relate to this?
I just want to look and feel normal again. 
Thanks for letting me blow a bit of steam. X
Yep can totally empathise ! I’ve got the 2 Docetaxel left too, and I feel totally run out of fight. Now, if I can summon the words here to encourage you to keep going and to feel able to keep going , that means I have to tell myself too, right?
@Jaygo from the start you have come across as such a positive and strong determined woman, and you’ve been an inspiration to many others. But of course it’s impossible for anyone to be positive 100% of the time, and we are all allowed to have feeling sorry for ourselves moments. We have plenty to feel sorry for ourselves about, that’s for sure. But the positive fighting self is still there, having a little rest and will be back. We can bloody well do this, and we will cheer eachother on!!!
Sending many hugs xxx
@nib32 I might just love you even more for this beautiful post. Thank you so much for the lovely words of encouragement. They are much needed.
I wonder what people envisage as a special treat when the time is right to say ‘ok now that’s that part over’? I have a long journey through this year as many of us do, but once chemo is done I’m going to count that as a mini-milestone.
Anyone suffering from nausea, stop reading now!
To mark that, I have said to my husband that I would like to visit the Crab Shack in Worthing and have the biggest plate of fresh seafood that my addled body can consume along with a lovely crisp white wine. When that day does come, I will post a picture.
Let’s keep going Nib, we’ve got this, as have all the other ladies reading. I have counted that it is 49 days until there will be NO MORE CHEMO IN MY SYSTEM.
I have put 49 magnetic scrabble tiles on my fridge and I will remove one every day that passes.
Thank you again. I needed this leg up this morning. xxx
That sounds like a really lovely treat! I plan to go out for a meal at yummy Lebanese restaurant nearby to celebrate. And a crisp white Lebanese wine will be my choice! I haven’t even been near a restaurant for so long as I’m scared of picking up up germs and delaying treatment again. I also plan to go for a full body aromatherapy massage, my poor body craves that.
Yes, keep counting down those days, there are far fewer ahead of us than behind now xxx
Goodness that’s such a change! So sorry you had to go through that
Triple positive so not done for a long time
anywhere between 2.8-1.5 and no known axillary node involvement! Several DCISs and calcifications around the breast though. So far it seems the tumor has shrunk but not sure as I was breastfeeding when I found it and everything was huge no unless egg harvesting counts I guess. Everywhere else I was semi conscious! Not sure, not really worried about anaesthetics and surgery and carefully avoiding reading up
Thank you so much nib! I was actually fairly outraged but not at them cause I didnt think that is be able to stop crying!
Fingers crossed those blasted neutrophils behave!!
@Jaygo Oh I totally get that feeling! My friend (also breast cancer) and I were saying that today: it’s so hard being positive and when you feel like S… and then someone tells you oh you got this it’s like “ I know cause the alternative is not happening but can I just scream into the void/pillow for a bit?! “ I sometimes have swear sessions so I can let of steam. Thankfully my neighbours know what is happening
It was but I just needed to tell myself that the new plan was to benefit me (even if I struggled massively with bits). I’d much rather it be gone and chances of recurrence reduced. I can say that now, I couldn’t at the time x
Hi Sammy
scared is normal, i have had 3 x EC and i am having my second DC tomorrow. I had very few side effects with the EC, no nausea at all, . So feel very lucky. The waiting is probably the scariest and hopefully once you have your first infusion your fears will diminish. Good luck. X
Hi everyone. Wow I’m glad I checked on here today. Not good to see that everyone else is struggling too but… I am really feeling that wall. I’m sorry I’ve been awol since the new year. I’m so grateful to have had a wonderful Christmas but in the new year my ultrasound indicated that the 8 weeks of TC I had had had (never needed 3 hads in a row before!) not had an impact any my tumour had grown. I then had to have a 9th session of it, which felt particularly cruel, then to move to E/C instead whilst an MRI was brought forward. Through this time I was also suffering with pain in my ribs and stomach on left side (same side as breast cancer) and was waiting on a CT scan to check for spread. Anyway; 1 week into E/C I got my MRI results showing the TC had worked on the lobular cancer 
and the same day I was in hospital due to chest pains (hb of 79… ended up having two units of blood) but as a result got my CT scan, which showed no spread and also showed the cancer as smaller! I then had a repeat ultrasound before E/C number 2 which basically showed the ductal tumour as around the same size, slightly smaller as it was in November. So they now think either E/C is working wonders or the ultrasound in early January wasn’t correct. Which leads of course my anxiety-and-intrusive-unhelpful-thoughts-filled brain to wonder… what makes this latest ultrasound correct then? If it can be that wrong? (There is 1.4cm between the two ultrasound largest measurements which is no small amount!)
I know I should be focussing on all the positive results I have had - specifically the MRI showing a really decent response in the lobular cancer size - almost halved in 2 dimensions. But I cannot stop catastrophising and how awful E/C makes me feel does not help!!
Anyway. Only 2 E/C left to go. I love the scrabble tiles idea… I might do something similar. Except I have mastectomy and rads yet to face and quite possibly oral chemo after that.
I spent a lot of yesterday asleep in bed (day 3). Hopefully today will be better. Does anyone else get hot and cold flushes all the time? The hot flushes are a constant for the last few weeks and come with a wave of anxiety and fear alongside (nice) but feeling cold seems to be to do with E/C? I carry a hot water bottle around with me then keep throwing it to one side when I get too hot! The first few days at least. My actual temperature is always normal. Except I just did my temperature and it’s 35.9. Oh bother.
Yes - I have hit a wall!!
Strength to all of us xxx
@letsdoit I am sorry to read of your worrying moments on this poo pile of a journey we’re on. I too had worries in January that the cancer wasn’t responding, so I relate to your post. I also relate to the trust issue. I had a year 3 clear mammogram last July following DCIS diagnosis in 2022, but all the while I had cancer (the current one). How the hell does one trust a mammogram after that? The answer is too long-winded to relay here.
Yes I get hot and cold flushes. I’m layering up and stripping off every five minutes.
Don’t beat yourself up about the catastrophising bit. I think that is entirely normal and understandable. We are vulnerable and in the hands of others to help make us better. I think when the catastrophising takes over, it is helpful to introduce the rational and positive to help maintain balance.
Yes I have mastectomy and targeted therapy to go yet, but I have chunked up my treatment plan into three distinct blocks to avoid total overwhelm. I will reset the clock again when it comes to round 2.
Good luck with your continued treatment and progress towards recovery. xxx
Thank you. First infusion done Tuesday and been feeling ok 
I am so sorry, this has happened and I can totally understand the catastrophising and not trusting technology. To be honest I always wonder how they see anything on those fuzzy pictures anyway so…
Oh the hot flushes are BAAAAD. I wake up most mornings sweating like a pig! The cold cap has actually been nice cause it cancels out the hot flashes
I always thought they were hormone treatment/menopause related but possibly chemo not helping either or did they put you on Zoladex too?
I think I’ve read that since herceptin has been around recurrence rate is a lot lower than previously - maybe the oncologist is more positive as chemo / medical management is more their area so they’re more up to date. Also, I see what you mean about not knowing until surgery if you’ll get radiation. If your cancer has completely resolved on the pathology report I don’t think you’ll qualify for radiation on the nhs, but if it’s still active then you would. Have you had the appointment with the breast reconstruction nurse? Mine was really nice and spent an hour and a half going through options. I knew I didn’t want to have pain in any other areas so diep was definitely out. Have you discussed the option of an inflatable tissue expander if you’re worried about having an implant that gets damaged by radiation? My surgeon doesn’t seem especially worried about doing an immediate implant even followed by radiation and it sounded like if it got damaged then it would hopefully be fixable. I don’t think any of the options are something we especially want so it’s hard to choose the least offensive!
I’m also finding it hard to stay positive. The side effects from the chemo haven’t been awful (but I’m a wimp!) it’s more the worry that it won’t be enough / I’ll have complications / it’ll come back anyway / it’ll damage something else etc. I’ve had one day of moderate chest pains during the T cycles that I got checked and felt quite reassured. I’ve had some very mild chest pains since and got checked again yesterday. My troponin has gone up from 5 to 14 which is borderline normal and could be stress related. Another echocardiogram has been requested…. We had quite a lot of family members with problems a few weeks ago and my cat was put to sleep so I’ve kinda been on edge since then, and the DVT plus picc being replaced wound me up too as I was really worried I wouldn’t get my last EC (I did get it). I’m worried about the anaesthetic but also not sure if I can have a nerve block due to underlying conditions and I don’t think I meet the anaesthetist until the morning of surgery. I find it very hard to monitor symptoms myself as due to pre existing conditions and a car accident I’ve already got most of the symptoms that they’d want me to call about and they’re not super severe so I feel like I’m wasting their time.
As for hot flushes, I think it’s the steroids! Mine are less now that I’m a few weeks out of chemo but I’m not sure if I’d already had an early menopause so it might be different for younger ladies. I noticed that when I get them my cheeks feel cold to touch so I know it’s not an actual body temperature thing and measuring my temperature is normal.