Hi all - not posted before but have been floating around since I was diagnosed on 01 October. I’ve had left breast mastectomy and reconstruction/augmentation (same day 31 October) Had some issues with necrosis and when the histology came back the consultant said I’d be better to take the nipple so had another op (25 Nov) and it’s healing really well now. I feel rather odd with just the one nipple but am sure I’ll get used to it. I am B5b grade 2 IDC with multiple calcifications ER 8/8 PR 3/8 HER2-ve my nodes are good!
The numbers mean nothing to me and I have completely put myself in the hands of the expert who has been nothing but amazing!
Been waiting for the oncotype results and they have come back with a score of 25 so my consultant has referred me to see the oncologist and I have my initial appointment on Monday where I am expecting to agree the plan?
It all seems very surreal and I am feel I am just going through the motions with it all - what else can you do I suppose but get on with it. Not sure what to expect Monday but if any one has any tips on things they wished they had asked but didn’t
@jnra
Hi there, I’m a bit of a night owl these days, so happy to chat, would hate to disturb anyone though I’m sure folk turn off their notifications but please feel free to PM me if you fancy a natter. I think we have all suffered sleepless nights!
It’s seriously worth looking at the tips and tricks section on the forum and although quite anxiety provoking, I’ve found reading back the chemo start groups of the last few months helpful and pretty realistic.
I’m not sure how everyone here has found it, but its beginning to feel like that there comes a time where you just need to get your first treatment over??
It’s a very reassuring feeling that if you find a bump you can pop on here and just ask… or moan.
@jojey
Hi there, welcome to the group. So sorry to hear you have had a bumpy ride. I have a uniboob, right mastectomy, no intention for reconstruction, so I suppose one nipple too, it’s amazing what you get used to! It’s like being on a parallel universe isn’t it?
So you have definite chemo
planned?
My personal experience is that we were armed with a list of whatever popped into our heads and the brilliant team answered before we even asked.
The unknown is awful isn’t it, just like the waiting
Fells like the waiting for the first chemo is going on forever. I have my Picc line fitting on Monday and then chemo starts the following Monday. I just wish i knew how i will react to it, as trying to organise care for my children (12 & 10). Im trying to make plans for May half term so we have something to look forward to. Wishing everyone a kind 2025 xx
Expecting to get my plan on Monday for a January start I’m totally numb and my mind is blank so will just see what he has to say Monday and take it one step at a time.
Hi @indigo2. I was diagnosed in july with invasive ductoral carcinoma grade 2 ER7 PR7 HER2- neg but whilst have mri scans etc… they found additional lump, after months of different scans in different hospitals etc…they decided i also had LCIS in the same boob and it wouldnt impact on the original plan for surgery. I had a lumpectomy in October with a licap reconstruction. When i got my results from surgery i was told i had clear margins but it had gone into my lymph nodes. After the longest wait ever for an oncology appointment (6 wks) i was told chemo was now in the plan. EC and Paclitaxel fornightly for 8 sessions. I am having my picc line put in on monday 30th and start treatment the following week on the 7th Jan. Should have been on the 6th but as its my birthday they agreed to start a day later so i can go out with the family.
Hi Everyone, been diagnosed with TNBC second occurrence in same breast. Picc line being fitted on 2nd January awaiting treatment start 3 courses of EC and 12 Pac. Then masectomy once chemo finished. Best wishes to everyone
Hi all. So sorry that you are all here. Chemotherapy is not great but it’s doable.
Anyone cold capping. I did 12 weekly Paclitaxel and kept most of my hair with 2 patches above my ears and some thinning. I had a wig and didn’t need it. I did cut my bob into a pixie and probably didn’t need to. I found distraction was better for the first 10/15 minutes some take paracetamol.
This thread is helpful
I would also recommend Paxman’s cold cap website for correct fitting and hair care. Also Cancer Hair Care Charity run by Jasmin who worked with Trevor Sorbie. They offer personalised advice on all hair loss issues including eyelashes. I was Lucy to be gifted some false lashes especially designed for those who have lost their own. More great advice from Look good Feel Better charity who do courses online and in person for hair loss ( with Jasmin), hair coverings, skin care and makeup aswell as nail hand and feet care.
@naughty_
What an insightful post and very informative post link, thank you. So pleased you had success with your hair experience.
I personally am not doing anything with my hair and just letting nature (or chemo!) take its course. I have cut it shorter as I just don’t want to experience the chunks on my pillow and in the shower thing. Fleecy hats at the ready, it’s fortunate it is winter in a way.
I do hope that all the women choosing their path will be happy and successful in their decision and jeez if it makes our journey any easier or tolerable you would try anything!
I am a very early January starter - my chemo will start on January 1st - 3 x EC then 9 x Paclitaxel. I had 3cm ER+ IDC and 10cm DCIS in the same breast so had a right mastectomy in October. There were micrometastes in two lymph nodes and onchotype 33.
I’m planning on freezing everything! Scalp, feet and hands. I’ve heard you probably only need to do feet/hands for Paclitaxel but I’m not going to risk even the EC if I can tolerate it as some people have mentioned problems on cyclophosphamide. I’m also taking in some iced water to sip to see whether this helps with mouth ulcers although I’m less convinced by this. However, you are meant to be drinking loads of fluids so I guess there is no harm.
I’ve also read loads about fasting the day before and day of chemotherapy to try to reduce side effects/fatigue and possibly increase effectiveness so I’m going to give that a go too - at least when I’m on the 3 weekly EC. My oncology consultant is happy for me to do it although feels there needs to be more research. However, a bit like the freezing hands etc, I just feel it gives me some control back in this whole process and see no downsides (bar hunger pangs) so i am happy to be my own research project! I figure it might reverse a little of the Christmas indulgences even if it does nothing else. However, there is enough research already done to suggest it might genuinely help so I’ll do it - or at least that is the plan!!
I’ve got a routine appointment with my GP the day before chemotherapy starts and I’m wondering whether there is anything I should ask her to prescribe for possible side effects eg mouth washes or stuff like that?
There is part of me that just wants to get started now and part of me that just never wants to start as currently I am as well as I’m probably ever going to be and it’s hard to get your head around it all. However, I’m trying to think of chemotherapy as my friend rather than my enemy - let’s hope it does it’s thing.
Hugs to everyone here. Christmas has been a great distraction but we will all have to get our big girl pants on for 2025. Good luck everyone. We’ve got this. X
As far as your GP appointment, I wouldn’t ask for anything in advance. I was in Velindre Cardiff and the oncology team wanted to prescribe or ask the GP to prescribe as they were more knowledgeable about chemotherapy and other drugs. I found the pharmacy department very helpful with interactions etc.
You won’t know if you have any side effects until you have them. I was on weekly Paclitaxel and had terrible diarrhoea but others didn’t. I had thrush but not every session. When you are having your treatment you will be given a helpline number who are 24/7 and you will call them first, they will then advise what you need to do.
If you are cold capping and freezing hands you may want a flask of hot herbal tea to warm you up. I found it very helpful as the refreshment trolley only came around twice a day. I didn’t fast before chemotherapy but my appetite/taste buds were affected by the treatment. I used frozen slippers and cold packs at home after chemo as the distance to the treatment centre was so far they partially defrosted before I started the chemo (pre meds and setting up cold cap).
You have to do what is right for you and if it works for you it could be helpful for others.
Welshwarrior I’m so with you on all of that!
Someone on a recent post said they brought a heated throw!
A few of us won’t be far behind you, so lucky to have everyone supporting each other
Big girl pants at the ready, all the best for your starting date. Happy bl**dy new year eh?
I am just going through the motions with it all - what else can you do I suppose but get on with it. Not sure what to expect Monday but if any one has any tips on things they wished they had asked but didn’t 
but please feel free to PM me if you fancy a natter. I think we have all suffered sleepless nights!
I’m totally numb and my mind is blank so will just see what he has to say Monday and take it one step at a time.
what treatment did you have before?
Fleecy hats at the ready, it’s fortunate it is winter in a way.
but just being positive.