Hello everyone,
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
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.
Evie xx
Hi jaynemc
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
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.
Best wishes
Katy xx