Hi there Lottie. I totally understand. I was diagnosed in mid December and was also expected to just need surgery and radiotherapy. I had my op in January, waited 6 weeks for results and low and behold, I needed axillary clearance and a cavity shave. I was terrified of lymphodema. I had another 6 week wait and then was told that there is still more. My 3rd op is next week. I'm 46, with a full time job, 3 kids and this was not in my life plan! I can only say that most don't get lymphodema. Exercise and keep weight as normal as possible. This will lower your risk. Do the exercises after the operation religiously. I only had a 17mm IDC, but now there are lymph nodes involved, I believe that chemo is probable. I'm still working full time and do far, no signs of lymphodema, although my wrist is a little puffier. Dr wasn't concerned and said that it could still be from op. 

I felt exactly like you. It took a while to get my head around it and to accept it. But this is my life now...I have to deal with it, whatever it brings my way. My advice is to talk to your surgeon if you need to. Make sure you are fully aware of why the ALND is necessary and if there is any other options like radiation to axilla. It is rubbish but you're not alone. Feel free to ask me any questions. When is your op? Good luck. X

Hi BlueSatsuma, 

thanks for the reply. I’m so sorry to hear you’re having another operation, sounds like you have really been through it. It’s so nice to hear you speak so positive though and to know I’m not alone in the experience. My op is also next week. I really hope I can get less anxious about it all. I’m still a bit sore from the last time so I think I’m just expecting to feel so much more worst this tim e. I also have some cording which again I’m presuming will make things worst when I have them all removed. But I know I’m probably just scared & overthinking it .Thanks for your advice and positivity , I do actually feel a little calmer now. Wishing you all the luck for your operation and recovery xx

I'll be thinking of you too. Let me know how you get on. X

I will do. Did you get more pain around day  5/6? I’ve been absolutely fine up to yesterday. It feels like I’ve hit the gym to hard. Struggled doing my exercises this morning. I’ve rang the BN just waiting for her to ring back . How’s your recovery going? Well I hope xx

I think the pain was more like resistance for me but it definitely increased when I started the week 2 exercises. I couldn't get very high on the one where you walk your hand up the wall. But all seems OK now. It's 9 days since the 3rd operation now and the new scar is healing well and causing no pain. But my ALND area is still weak for anything involving lifting arms up. It is all improving though. We're in Cornwall and I've walked miles, done lots of activity, and I'd say I virtually forgot that I'd had anything done. See what nurse says but it all sounds pretty standard to me. Xxx

Aww BlueSatsuma it sounds like you’re doing amazing, that’s so lovely to hear. Oh yes the Cornish air will be doing you the world of good. I must admit I’ve definitely had more energy this time around but maybe that’s because I’ve known what to expect. BN rang back, all is normal . She said just to carry on using the arm regularly and increase the excercises to 4 times daily if  possible . It’s feels much better today. I’m also taking regular paracetamol since yesterday which I haven’t been taking anything.  Oh those pesky wall excercises! I must admit I’m dreading starting them tomorrow but like you said I think time is the key. I remember last time each day got easier even with the cording. I’ll keep you updated on how things are going . Take care xxx

Hi BlueSatsuma, 

Just checking how you are doing? Once my drain came out things got better & the cording actually disappeared! Managing the excercises fine so far. I had my follow up appointment this week. No more surgery needed!! I’m so pleased. They did found one more effected lymph node at level 3 so does definitely mean chemotherapy for me then radiotherapy. Sod’s Law that if it was lower I wouldn’t need it but it is what it is. I’m just happy to be moving forward. I hope you get your appointment soon and your margins are clear. Xx

Hi there. Good to hear you are feeling well and no more surgery! Sorry you need chemo, but at least you know the cancer all be killed off. How many nodes in totalsand? Wouldn't you have needed chemo if there had not have been the level 3 node?  X

Hi, from both surgeries 3 nodes in total. They made it sound like the only reason for chemo was because it had gone so high up (level 3). I haven’t got my oncology appointment yet but I’m going to ask them to explain anything. Xx

Hopefully the appointment will come soon. There's so much waiting. I think that is the worst part x

It definitely is, sometimes it seems never ending. Any news on your follow up appointment? I hope you hear something soon if you haven’t already xx

24th June. I will either have clear margins like you and be passed to oncology, or will need masectomy. X

24th June. I will either have clear margins like you and be passed to oncology, or will need masectomy. X

Aw I’ll be thinking of you. Wishing you good luck xx