Lymph Node removal and lack of arm movement

Janeo70

Hi everyone - first post on here:) Quick question re lymph node removal, I had surgery 4 weeks ago, lumpectomy and lymph node surgery (8 nodes removed, 3 cancerous), I went back for breast re entry surgery 3 weeks ago to ensure the margins were right. I healed well and have been doing my exercises twice a day for my left arm. I still have quite restricted movement in my left arm and was wondering if anyone else had experienced this? Money is tight at the moment as I was due to start a new job 3 days after I got diagnosed. I am seeing an OT, but don't really want to see a physio on top of this...I'd love to hear of anyone who has experience with this. Thanks in advance😊 

GinGin

Hi @Janeo70
I had lumpectomy and axillary clearance (13 nodes removed, 2 cancerous). My surgery was Aug 2023 and had clear margins. My left arm was restrictive but improved significantly after I saw a physiotherapist. I didn’t see an OT. But after radiation ( my last radiation was in mid Mar 2024), it became very restrictive (more restrictive than it was before) a month after radiation. My physiotherapist has assured me it will get better… fingers and toes crossed.

arpie

Sorry to see you join our 'exclusive group' here, but Welcome to the blog! Hopefully we'll be able to help you with your ongoing recovery from your diagnosis & treatment xx.  It can sometimes take time, even months, for the restricted movement to return to normal after surgery.   Check with your Medical team up there - they should be able ot point you to some free/reduced cost physio/assistance in recovering from your surgery.  Failing that, other members in the area may be able to point you towards assistance they've received in your area around Cairns (maybe edit/add that to the title - you have 24hrs to do this - otherwise a Moderator may be able to help you with this. xx

Gentle exercise (possibly even gentle swimming) may be able to help - but only do so under the guidance of a health professional xx. You can't rush this 'recovery' ....  If you put 'arm movement' into the search area and click 'newest', you may find some links that will help .... but realise that everyone is different & heals at different rates. ...... make haste slowly xx

take care & all the best

Janeo70

Thanks for your reply @GinGin . I'm sorry you are going through this still , yes I had heard that radiation can bring it back. Sounds like you have a great physdio though that will help you with it. Good luck and I have everything crossed for you! Thanks for taking the time to reply  x
Thanks @arpie , some very good and valid advice, it is getting better everyday with the exercises I'm doing. I can't wait to get in the pool again and do some laps, but have been told to hold off for a couple of weeks to make sure everything's healed after surgery, but I will definitely do that. This journey is teaching me a lot already - and improving my patience levels is something I need to work on. I am going to go and look up some more now - thanks for your reply. x

Tri

Hi @Janeo70 sending you good vibes. I experienced that restriction after a sentinel lymph node removal and lumpectomy for early stage ILC in August 2023. It was no better after radiation therapy in October 2023 - much in the same way described by @GinGin. 

The stretching you’re doing is really wise - great job!
Things are looking up after I saw a physio this week; she specialises in breast cancer patients and identified “cording” I didn’t know I had developed in my armpit (associated with the sentinel lymph node surgery). I’d read about cording but I didn’t realise that’s what I had. The tightness restricted my freestyle/lap swimming and I couldn’t really straighten my arm above my head (affecting yoga). 

In addition to cording, I had ongoing tenderness in the breast which made ultrasounds for ECGs and my 12 m check not so fun, for this she treated me with low level laser therapy to help break down the thickening and small internal scarring in my left breast. 

I hope your stretching now stands you in good stead and sending you good vibes as you go through your treatment. 

Janeo70

Thanks @Tri - I'm so pleased you found a physio who specialises in breast cancer, it sounds as though you are getting some great help. I think I will see if there's a physio up here in Cairns. Thanks so much for your reply, good luck with getting your swimming and yoga movement back (I love those activitivities as well). 

Afraser

Hi @Janeo70

It seems that mobility difficulty is anticipated after lymph node removal, but not always mentioned beforehand! I wasn't aware it was expected until I had a scan shortly after a mastectomy and axillary clearance (17 nodes, 1 cancerous) and was asked if I could put my left arm back, which I did easily and quickly to the surprise of the pathologist. I assume it depends exactly where your surgery has been and how many nerve endings have been disrupted. My post surgery mobility was excellent but even now, after nearly 12 years, I can occasionally get a scar tissue twinge. Stretching and exercises are key - can your surgeon or GP advise on what you might do additionally to the general exercises without compromising healing? Best wishes.

Coastiejas

Hi @Janeo70
I had an auxiliary clearance under my left arm in November 2023 (12 nodes removed, 1 cancerous) I was lucky as my hospital had a rehabilitation program which was paid for by my health fund as well as a lymphoedema program.  I did that for about 6 months post op. I had pretty much full movement back after a few months and have had 6 weeks of radiotherapy which finished 10 days ago and I still have pretty much full movement. I did keep doing all of the exercises that I was given.  The other thing that has really helped my movement, cording and lymphoedema is qigong.  Look good feel better have some free online workshops  (lgfb.org.au). The key seems to be persistence with the exercises and gradually building up your movement,  doing it every day, it's the same with the qigong,  I still do it every day.
Best wishes for your treatment.

Coastiejas

I forgot to add you can get a care plan from your gp that can get you access to free/ reduced cost physiotherapy (depending on the physiotherapist).

Janeo70

Thanks so much for sharing @Coastiejas, that has really given me the motivation to keep going with the exercises and I will definitely look up the lgfb online workshops as well. Truly appreciate the advice and am so pleased that all of your persistence has paid off. Best wishes to you as well. x

Janeo70

Thanks so much @Afraser  for sharing your journey, wow that's amazing about your immediate movement. I will definitely ask for more exercises and am feeling it getting better every day which is a nice feeling. 

Abbydog

Dear janeo70,
Some good advice above.
Definitely see your GP for a care plan for Physiotherapy. Perhaps a specialist one that does Laser.
I was very lucky, like Afraser.In 2020, I had Right Mastectomy with axillary clearance, 25 Lymph nodes removed, with 3 cancerous. Movement was not limited. I did do all the recommended exercises. I had a little cording.
I chose to see a specialist Physio that does laser and monitors for Lymphodema. I have none of that yet, but I am careful. I wear the pressure sleeve, when flying longer distances.
I'm sure that you will see improvement with exercise. Work on this as much as you can.
 It will be important, especially if you are to have Radiotherapy.
 I had to have my arms positioned above my head while that happened. I think that is the same for most of us, that have R/T.
 

Janeo70

Thanks so much for sharing @Abbydog and great idea re wearing the sleeve while flying- I will make sure to remember that as well now. I am seeing an OT who has been great with scar management as well. Yes having radiation as well, so keen to get on top of this part asap.