Hi Jayne and Katy
Jayne - I don’t know if you are still reading this thread or have headed off to radiotherapy threads, but if you are still on here I wanted to say a belated yippee 😁 to the fact that you don’t have to have chemo and hope that your BCN was happy with the progress you have made on your arm exercises so that you can go ahead with radiotherapy. You had some great advice from Jaybro.
Katy - I hope you are feeling better than you were in your last post, 🤗 to you. I had a mastectomy and full node clearance about 2 years ago. My underarm was numb for a long time, I got used to putting on deodorant but not being able to feel it - but I’ve got feeling back now, can’t remember when it happened though. I also hope you feel you have made some progress with your arm exercises - progress feels slow in the early days but does speed up, though I did have some physio to help. Happy to answer any more questions if I can.
I am now day 13 since having full node clearance so have been reading your posts and progress with interest. I am pleased to read that u had a big improvement by 22 weeks.
I am still very swollen and sore. Part of the skin under my arm is still completely numb too. BC says it might be nerve damage but should eventually come back. Did u have that?
My arm pit is a lot more tender that the masectomy scar but I guess that makes sense from all the poking and prodding!
At the moment my arm movement is not great so need to work on that.
So good to read of your progress. It sounds fine and you sound more confident! Do you know that the radiotherapy pose only requires your arm to go level with your ear, a kind of sideways movement? Not back any further. Try putting your fingers against the dip where your head and neck meet (don’t know what it’s called) and then moving your raised elbow back. If you can barely see the elbow out of the corner of your eye, you’ve made it!. There’s an armrest to support the arm and a handle they ask you to grasp, which makes it easier because it brings a bit of your arm forward a little. It’s comfortable once you’re used to it. I was very surprised as the pictures make it look like you need to get it as far back as, say, lying on the floor and getting your arm to floor level. It’s nowhere near that so don’t worry.
The other thing is, the oncology physio recommended doing the raised arm exercises lying on the bed or floor with two pillows, one just under your head and shoulder with most of it extending upwards beyond your head, the other on top of it, further across from your shoulder. Then when you raise your arm, you have some support and you have something to rest your arm on when you take it back, rather than striving to get it right down. I hope that makes sense - like most of us, chemo-brain throws little blanks in a bit more than I’d like.
The aim is to be able to rest your arm above your head or in the rads position comfortably on the pillow for a few minutes (eventually). The pillow really helps. Then you remove the second pillow as your stretch gets better. I am close to finishing my radiotherapy now and I still have to massage my armpit and breast muscle before I go in to make sure there’s no discomfort lying down for the treatment (a few short blasts that you don’t feel). It looks a bit lewd but what do I care! I do that regularly through the day too as my mastectomy scar is too tight.
As for not needing chemo, that’s brilliant news. A good prognosis and 4 months of your life not tied up in what can be a nasty process! Good luck with the BC nurse. She has your best interests at heart even if she doesn’t come across as sympathetic. And at least you can access her. I haven’t seen mine since I started chemo at Christmas!
Hello there Evie,
Thank you so much for your reply - you made me laugh with your note writing as well x
So yes progress has been good of late with my arm but I will get the definitive 'don't hold anything back' verdict on my arm mobility t'moro as I'm seeing my breast care nurse for my treatment plan. No doubt she will give me the hard line and tell me its not good enough and if I don't try harder she'll delay the start of my radiotherapy. I'm sure I'll be good enough by then though as there is currently quite a wait around this area for radio.
My Oncotype DX results are back as of today and I scored low so there is no recommendation for chemo. Phew quite relieved and had convinced myself I'd be having it. I thought I'd be going the whole hog with this thing but I've been let off there.
So looks like I'll be heading over to the Radiotherapy section of this great forum real soon. All the very best xx
That’s all really good and positive news, I was so pleased to read about the progress you have made. I think it will really help others who may be struggling in the early days to read your story. May your recovery continue to go well 🤗 and best wishes for your radiotherapy.
I had to laugh at your first para - as I could have written your last 2 sentences, I too am only 51 and also forget to read the notes I have written!!
Hi there Evie,
Thank you very much for your message x Yes I had been meaning to update this thread and I kept forgetting lol! Omg my memory sometimes is so bad and I'm only 51! Have to write myself little notes - a note for this a note for that - just got to remember to read the notes lol!
So yes now I am 22 days on from full auxiliary clearance - quite different now from when I posted here and I was only 12 days on - its amazing how much difference those 10 days have made. Ok so I'm not swinging my arm up above my head but I can get my arm above my head altho not all the way with it yet and not as far as required for the position for radiotherapy. I have been pushing it a little bit each day albeit carefully - its been about trying to do just a teeny bit more then the day before otherwise there was no forward progress things were just the same 1 day to the next.
It does still feel tight in my armpit, still tender + sore down the full length of the inside of my arm and I have to lie flat on the floor and go thru a bit of discomfort in order to get my arm properly straight.I kept looking in the mirror and noticed I was always carrying my arm with a slight bend to it at the elbow coz that was comfortable so a few times each day I lay flat on the floor, embrace the pain and make that arm lie dead straight. Straight after that I do the wall climb and I can always get a bit higher.
I decided not to go to a physio as I was happy to work out what I needed to do and how to get to it - its still on-going of course. I've made most progress once I looked at the radiotheraphy booklet + saw the position you have to lie in on the bed with your arm above your head. That's what I'm aiming for. Several times a day I lay on the floor and just see how far my arm will go above my head - it won't do it on its own it needs help from my other arm especially if I'm trying to make it go just a tiny bit further than it did yesterday.
Thankfully I have seen progress as its so frustrating when you don't and that's when I 1st posted here and got support from some lovely people. Hope this all helps others in the same situation. Good luck ladies. x
Hi Jayne - I was just looking at old messages and wondered how you are getting on now, your last message sounded very positive so I hope it has continued that way. Hugs 🤗, Evie xx
Hi there Evie + Jaybro,
Many thanks to you both for your very helpful replies that has made me feel much better. I can relate to so much of what you both said. In fact the good news I have just been out for a walk for about half an hour and I actually got a good 10-15 mins into the walk before my arm started aching its full length like it normally does the sort of ache where you just want to chop it off lol! So that was good progress today.
The exercises I have are the Breast Cancer Care fold out leaflet. I'm no where being able to lift my arm up - just getting dressed has been so painful when its not just your armpit but your whole arm is so sore on the inside along its entire length. I have a piece of blu-tak on the wall where I can reach up to - I moved it up a bit on Saturday (a good day) then yesterday + today I had to move it back down again. The progress is as you say up and down but hopefully on it is average up if only slowly. I need to be practice more patience lol!
Since I'm waiting for results to come back from the Oncotype DX test then I won't be starting treatment for a good few weeks yet. If its chemo it will be around 6 weeks and if there's no chemo and I'm only having radio the wait for that around here is 8-10 weeks. Yes I see what you say about needing to get my arm up for that. I know my breast care nurse will look to see what progress I've made when I'm there for the Oncotype DX test results in 2-3 weeks. If its not what she expects then I will do as you suggest and ask about physio, massage + heat / cool packs.
Many thanks once again x
I will report back as it may help others in a similar situation and its great to be able to share experiences.
All the best to everybody x
Jaybro - that is a really good and helpful reply for anyone just going through/who has had surgery, especially the bit about needing to be able to hold that pose for radiotherapy. I had forgotten that. I wish you all the best for your radiotherapy and recovery.
🤗 Evie xx
It’s still early days for you - full axillary clearance is bound to cause greater discomfort and take longer to heal. It also can cause problems because nerves inevitably get severed and have to repair. I agree that you have to listen to your body and perhaps adapt the exercise regime. However, if you’ve further treatment ahead, particularly radiotherapy, you are going to need the mobility that’s evading you right now, which may be why your BC nurse is using tough love. There’s also the risk of cording developing if you don’t maintain good movement and you don’t always see or feel it until it’s problematic.
I had full axillary clearance (19/21 nodes affected but no spread elsewhere) last October and, although I didn’t follow the exercise regime to the letter, I was satisfied I had plenty of mobility. Then chemotherapy started Christmas Eve and I was incapable of coping with breast care and chemo. I forgot the exercise apart from the occasional shoulder roll (too exhausted to do it most of the time and one particular drug also caused nerve and muscle pain - a further deterrent). I did keep my eye on visible cording and used comforting massage to stop it in its tracks. I didn’t notice it move to my armpit. I’m now about to start radiotherapy and have had to have physio because my breast muscle has tightened up and the cording in the armpit makes stretching pretty painful - but I have to get that arm above my head to assume the required ‘pose.’ Although the exercises are uncomfortable/painful, they are very quick - maximum of 3 minutes once an hour - and much more effective than the original BC exercises I was given.
Maybe your BC nurse (or someone well-informed medically) could advise you on the use of ice and/or heat to relax your muscles a little before exercise and soothe them after? There’s also gentle massage, but with full clearance you need to be sure you’re doing it right. Don’t berate yourself for what you can’t do but do persist and you will see improvement slowly. Then keep at it, even once you’ve got your full movement. My friend still does her exercises six years after treatment! Good luck - I hope you see progress over the coming weeks.
Hi jaynemc - a big welcome to you, but sorry to hear that you are having trouble with your arm exercises. I also had node clearance at the same time as a mastectomy (in 2017) and I do remember the early days feeling like I would never get my arm above my shoulder. I was so frustrated that I couldn’t get clothes over my head and could only manage shirts with buttons. I can’t quite remember how quickly movement came back - it was slow to start then all of a sudden it seemed like I was back to normal.
Are you using the Breast Cancer Care exercise sheet? I think that was the one I used. I also had to have some physio as I wasn’t making as much progress as I wanted/should have - can you ask and see if that is available to you?
That said, it is only 2 weeks since your node clearance and that was your second operation in a short time, so your body needs time to recover. You will get there - just as I did when I was convinced I never would. So long as you are doing your exercises several times a day, every day, without fail you will get there - maybe with some physio to help you if need be. I would be guided by your body - push a little bit more if you can, but you don’t want to overdo it and cause damage (actually I’m not medical, so don’t actually know if you can cause damage 🙃). I know nurses and physios can sound bossy at times, but I guess they are just trying to make sure we keep up with our exercises. Even now I make sure I exercise my arm regularly.
Wishing you all the best with your recovery and happy to chat more if I can help.
What a fantastic forum I have been reading around on here over the last couple of months as I was diagnosed at the end of March....
1st op 18th April - IDBC grade 2 er+ pr+ her2- 3cms tumour + micro invasive lobular with LCIS + sentinal node biopsy (2 nodes removed both with cancer cells)
2nd op 15th May - full node clearance (17 removed) all clear
Now waiting for results of Oncotype DX test to determine if chemo is appropriate
So far so good but doing my arm exercises is very very difficult. I think part of the problem is I'm comparing it to having just 2 nodes removed when progress thru the exercises was good and I was onto the week 2 exercises at the start of week 2. This time I'm at day 12 and still can't yet raise my arm above my shoulder and getting it to my shoulder is rather painful. I can't walk very far as my arm starts to ache and the only way I can relive that is to sit down.
Feeling rather frustrated as there doesn't seem to be any progress day on day. Just wondered on other ladies experience of this. Does it take more time should I still be going gentle on this or should I be pushing it a bit more as my breast care nurse told me on Friday - in fact she told me off for not doing the exercises well I have been trying it just doesn't look like they're having much effect.
All the best to everybody x