@wizzer I had a look at the evidence for cooling hands/feet and reducing neuropathy and whilst there wasn’t strong evidence there was some respectable looking research suggesting it did help. It wasn’t practical for me to take anything that would actually stay cold on to the unit but one paper also tried compression and got some positive reports so I did wear compression stockings during paclitaxel. I got a bit of neuropathology which has mostly gone now just over a year on. I think @naughty_boob ‘s advice is very sound about making your treatment decision. Do ask every question you can think of about the exact chemo starting plan/ outcomes etc. Also about opportunities to discuss how its going, adapt treatment or indeed stop a bit earlier. Remember too that the bcns here are great at helping you think out your questions and whilst no one can tell you what to do there’s a lot of support to make the very best decision you can with what is currently known. We none of us can second guess the future, very best wishes and make sure you prioritise fun at every opportunity you have a little energy!
Thanks @carrie5 
I hadn’t really thought about the possibility of different dosages etc - i just assumed it was standard! Although i had heard that some women have just been given 6 months of the trastuzumab instead of 12 
I definitely need to do a bit more research! To be honest i was a bit shocked today as my surgeon had given me a much stronger impression that the team had decided treatment wasn’t needed and I thought i was just going to talk to the oncologist to confirm that - but she was actually saying it was a much greyer decision..
Really sorry to hear about your mum
I was also 53 and got diagnosed with 4cm DCIS (after a biopsy) with IDC possibly lurking within it. They couldn’t really see because of my dense tissue.
I was offered chemo first but decided against it. I’d read that it can make the edges of the tumour ‘fluffier’ and harder to get clean margins and potentially give it more chance to metastesize. It just felt right to me to go with a flat mastectomy asap particularly as the dcis was big and this also meant that I avoided needing radiation, which they do after a lumpectomy- as it was my left side and so more chance of heart damage.
After they found a small IDC I’m now considering the paclitaxel and trastuzumab combo which doesn’t seem the worst as far as these treatments go 
All the best
@wizzer I have nearly finished 11 paclitaxels and 1 doxcitaxel and only very recently towards the end have I started to have mild issues with neuropathy in my fingers. I have iced my hands and feet the whole time - it seems like its protocol at my hospital (Australia) - but it seems to have worked for me (I find it very unpleasant the feeling of icing the hands but have persisted and I think its worthwhile). The other thing that has really helped me is acupuncture, when I’ve started to feel the neuropathy I’ve had acupuncture and its mostly gone away again.
They also reduced my second last dose to help as well, which has also helped with my other side effects too.
Good luck with the decision xx
@lg1206 So sorry to hear about your mum. I wasn’t given a choice (Triple +++, 2.3cm lump, Stage 2) and have had chemo/targeted therapy first. One of the advantages of chemo first is that they can check on how the lump is responding to the chemo. This can be quite motivating to get through the chemo too if you can see it is shrinking.
As others have mentioned they can use the chemo to shrink the lump if you want to have breast conserving surgery/lumpectomy. I am having a mastectomy for various reasons but also as I’m hoping to avoid radiation.
There are so many tricky decisions to make on this journey but ask as many questions as you need to to help your mum decide.
Hi @wizzer
Thanks so much for your reply. So sorry to read you are also going through this. There is no ‘correct’ time to be diagnosed but I’ve only just had my first baby 4 weeks ago so the timing just feels so cruel.
It’s so difficult to make the decision as no one knows the correct one! Will see what the oncologist advises and go from there.
Wishing you all the best Xx
Morning @rhombusrhombus
Thank you for taking the time to reply to me I really appreciate it so sorry to hear about your diagnosis too.
You’re right - seeing the lump shrink with the chemo might provide some motivation to my mum!
Hard though as you feel like you just want the lump and cancer out immediately! But also don’t really want my mum to go through surgery to remove a bigger lump if the chemo can shrink it.
Also what happens if chemo makes my mum too sick to have the operation? Or do you not think that would be the case?
Not sure if my mum would need radiation - everyone seems to want to avoid it.. I haven’t looked much into it yet,
Thank you - wishing you all the best
Enjoy! Check out Lemonrock which is my go to gig platform when looking for live music.
I think when you get to speak to the oncologist it will really you help weigh up the pros and cons both ways for your mum.
For me, I would have radiation if it was necessary, but after 4 months of chemo, and then more drugs after surgery, to be able to avoid another treatment is definitely appealing.
I have a mutant Chek2 gene which is one of the other reasons I’m opting for bilateral mastectomy as after seeing the genetics counsellor I have learnt that it reduces my future risk quite significantly. So that was a big part of my decision making as well. (I’m 42).
In regards to the surgery after chemo, it is not an uncommon way to do it, and my understanding is they usually do it about 3 -4 weeks after your last chemo so your body has time to recover, in saying that, mine is scheduled for 20 days after my last chemo and right now I can’t imagine feeling well enough to have surgery that soon, but they say it should be fine!
Hi @lg1206 Sorry to hear about your mum, hopefully she will join us or can read the posts via you,
I was 54 at diagnosis and had a 2cm tumour ER+ HER+ and an MRI found a 0.9cm ER+ in the other naughty boob. I was told the 2cm was the cut off for surgery first, had it been any bigger it would be chemo to shrink so they take less tissue with lumpectomy/wide local excision. I had the MRI because the mammogram and ultrasound had different sizes and the MRI is more accurate. I had surgery first, then chemo ( 12 weekly Paclitaxel) and Herceptin. I had no lymph spread and my surgery had remove the tumour with clear margins. Surgery was 5 July and started chemo 14 September. I had 18 cycles of Herceptin. Although there has been some evidence that 9 cycles is just as effective but not all cancer centres off this. As mentioned by @wizzer
The Persephone trial looked at less Herceptin to reduce overall side effects especially on the heart. This was published in 2019
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30650-6/fulltext
I would recommend reading through the thread, even though it’s really long as there is lots of information shared.
Take care
@rhombusrhombus thanks for the info. I wonder whether part of the reticence about the cold therapy is how much hassle it sounds like it is - changing the cold packs etc.
I think i might look into compression as an easier option if they won’t do the cold
How have you felt otherwise? Have the side effects been manageable? I don’t really know what to expect! Do you still feel like you can go out and do stuff, or work?
Yes, my hospital manages all of the ice gloves and slippers as they offer it, which makes it much easier for me, but must add an extra bit of work for the nurses. I’ve read other people have had good experiences with compression too.
I might not be the best person to ask as I have had quite a rough time with chemo, I haven’t been able to work really (but I’m a costume designer so it would have been a bit difficult to do my job anyway!)
I was on TCHP at the beginning but the doxcitaxel did not agree with me so they changed it to weekly paclitaxel and the CHP every three weeks. The paclitaxel has been easier for side effects, but going weekly is its own hurdle, as you don’t get quite as much time to recover and you end up at the hospital twice a week for bloods and then treatment. My cycles have been really up and down, some weeks I’m better and some weeks I don’t really want to get out of bed.
Once you have your first session it will be easier as you will know what to expect, they have lots of good medications to help you manage your side effects, and definitely contact your team to let them know how you are and what you need. Lots of other people do really well, I think, especially on the Pacli, it’s amazing how it affects everyone so differently.
Hello @naughty_boob
Thank you for taking the time to reply to me. I really appreciate it - it helps more than you will ever know!
So sorry to hear you’ve had to go through it all too. Life is cruel!
Thank you for the link I will have a read through before we see the oncologist on Thursday.
Would you know if having chemo before surgery would mean more rounds of chemo? Or surgery first would mean more rounds of chemo? I guess it depends on the individual right?
I’m not even sure what kind of chemo mum would be give yet - but I’m sure we will find out on Thursday.
Thanks again xx
That’s so helpful thanks 
It makes me think that i should just give it a try and see how it goes.
Costume designing sounds really interesting 
I’m a craftsperson and haven’t been able to work at all since all of this kicked off - too dangerous to use a lathe when I’m so distracted and it’s been impossible to feel creative 
My cancer treatment (est+ &Her2+ stage 3b) was a long time ago. And I had chemo first. It was a different treatment back then so please dont compare me with what ure mum will have. My point is that I was very ill admitted into hospital twice but I came through. Amazingly my lump which was a 100mm had disappeared. I still needed the masectomy becaue of my bc type grade stage. I was operated on about 6 weeks after completeing chemo. I was fine. Staff in hospital were lovely & looked after me..I had delayed reconstruction as had rads too.
This was 12yrs ago! Am still clear. So please take heart. I was 58 at diagnosis. xx
From what I have read over the years, the rounds of chemo depend on the type they give the person, stage, size of tumour etc.
I would recommend looking at the monthly chemo starters group for more information and the breast cancer now website. As well as MacMillan.
Thursday isn’t too far away and I sure you will get the information you need. I would recommend you or your mum making a list of questions you have and making notes about what they say. You can then look back after the appointment to familiarise with what they have said. I found it really helpful to do this throughout my treatment. Also if I had something that came up when I was at home, I would call my breast care nurse.
@lg1206 it might be good to record the conversation on Thursday. It can be a lot to take in and sometimes things will come up that you’re not expecting or don’t know about and it can be helpful to listen again as well as take notes like @naughty_boob suggested
@waveylocks thank you for your reply!
Glad to hear your journey was successful helps to give me some hope that my mum will also pull through!
Mum has a hard battle ahead of her but at least she has us by her side every step of the way x
Thanks again @naughty_boob
I will take a look and definitely will take all my questions with me on Thursday. Taking notes is a great idea so thanks for that suggestion
@wizzer thank you that’s a great idea!
I always feel like I come out of these kind of appointments having asked all our questions and then I forget everything the doctor had said! My brain is always in overdrive trying to remember all the information.. and being only 4 weeks post giving birth everything seems to go in and then I struggle to remember afterwards!
Great suggestion thanks so much xx