When will my upper arm feel normal after mastectomy with axillary clearance?

Abbydog

My op was 10 weeks ago. Physio tells me my arm is normal. Zozo measurement ok.
I'm told nerve damage. My arm feel bigger and like something is tight around it.
I have a small amount of cording

Shellshocked2018_

Hi Abbydog,
welcome to this forum , I’m sure others will jump on with some ideas.
I would contact your breast care nurse and have a chat, she may be able to recommend someone.
I have regular massages by a lymphatic masseuse which helps with my arm swelling and tightness, Daily stretches and exercises as well as dry brushing before showering, swimming is really good as well.
There are some physiotherapists that specialise in cording and Lymphoedema .
Your breast care nurse can guide you and can give you recommendations of specialists in your area.
Good luck. Xx

Blossom1961

Hi @Abbydog My mx and anx clear was Nov 2018. My upper arm still feels swollen and numb. It is normal size. I have gotten used to the feeling. Putting on deodorant is always an interesting exercise though. I usually overdo it as I can’t feel it going on and end up with it dripping wet. I now apply it in front of a mirror. There is a lot of things they don’t tell you prior to your treatments. Unfortunately we have to learn as we go. Just as well we have this forum, it has been a mind saver for me.

Afraser

Hi @Abbydog
Nerve endings do get mashed about a bit in an axillary clearance so some short term swelling and numbness is pretty common. Like @Blossom1961, I had difficulty with roll on deodorant as my armpit clearly belonged to someone else. It’s improved with time, but a bit of feeling loss seems permanent - doesn’t affect anything although if I used hot wax I’d have to be careful, hot or cold does not register very well. But cording or any short term fluid retention may be helped by a lymphoedema therapist. Best wishes.

Mags44

Thanks @Abbydog for bringing this up and others for your feedback. I had double mastectomy and ancillary clearance last Thursday and there is certainty a mixture of numbness, swelling and possibly some nerve pain in my upper arm. I gather it will take time to settle. I expect there is fluid retention too and I notice weird sensations / small spasms in around the ancillary area and upper back. 

Cheers
 

Abbydog

To Mags44 
The other thing I hadn't been warned of prior to surgery was seromas. Apparently quite common, but very annoying.
They eventually resolve. I had mine aspirated 5 times, over the first 7 weeks post Op. I'm told there are wide variations in frequency and duration of seromas.

Tinks

My right mastectomy and clearance was 8 months ago and I still have residual numbness, upper right arm especially going around the outside and back of the arm and near the scar area while some of the immediate numbness and stranger feelings did eventually resolve. I don’t notice it much now as I got used to it!

My BS said Pre op this was going to be unavoidable, but should not affect range of movement etc. I had seroma formation that settled reasonable quickly and cording that came on suddenly 6-8 weeks post op when on the red devil. Apparently the inflammation from the chemo is a factor.

Big hugs Tinks xx

Sister

You said that you have had it assessed by a physio - is this someone who specialises in lymphoedema?  If not, find one who does.  The tightness you describe could be an early symptom or it could just be the way your arm feels now.  This is something you will have to get used to.  However, do see the physio about cording, regardless.

Tinks

I’d just like to echo @Sister re specialist physio. My BS sent me as soon as I noticed cording and I have needed treatment for that since then. That was not related to the residual numbness issue though.

Tinks xx

Mags44

Hey @Abbydog I know what you mean, there is fluid starting to build and and that tightness is there. As others have highlighted I think it’s a good idea to see a physio who specialises in this. I saw my surgeon yesterday for general post surgery check-up and he said everything looked ok but I need to do my post surgery exercises so that is a wake call for me.

I hope you can get the help and advice you need.

Best wishes

Abbydog

The physio that I have been seeing specialises in Lymphodema and uses Physio massage and Laser therapy. The Zozo measurement is supposed to gauge lymphodema and it's progress. 
Thanks foe everyone's advice.

Shellshocked2018_

Abbydog, have you tried dry brushing daily on your arm to help with the fluid build up?
I have also been told to try gentle walking on a trampoline to help with Lymphoedema. Tai Chi is really good and swimming.
I also have an arm sleeve that I wear especially when I use my arm a lot out in the garden, or travel long distance in a car. 

I also visit a massage therapist that specialises in draining the lymphatic system, which does help me.

At present I’m stopping it from getting any worse, but I know exactly what you mean by the arm feeling bigger. My full auxiliary clearance was July 2019, still have numbness under arm pit and upper arm.
I think for me it’s nice knowing that what I’m feeling at this stage is normal, so I’m just going with the flow and trying to do as much as I can to keep things at bay.

Sending hugs x

Abbydog

Thank you for your advice. My Physio says I don’t have lymphoma yet. She has done the Sozo ( something like that) measurement. I’m told it can appear at any time, but often not for a year. I have fingers crossed. The Physio specializes in lymphoma and laser. I have had a few sessions to aid healing, cording and checks lymphoma. Thi chi and swimming are appealing. I’m sure there is nerve damage issues. My perception of my arm doesn’t match its appearance  on top of that I have a bit of a ‘dog ear’ or extra tissue under that arm at the end of the scar. The seroma finally settled a few weeks ago.  Maybe it is useful if I decide on reconstruction. Are you planning reconstruction? Nice to hear from you. 

Shellshocked2018_

Hi Abbydog, I’m not having any reconstruction surgery as I only had a partial mastectomy, so I have one boob bigger than the other. At this stage it’s not bothering me.
I had a seroma under the armpit and had it drained about 5 times, instant relief when that happens. I do tend to get fluid trapped in between my original surgery scar and my auxiliary clearance scar, due to the scar tissue. I’m seeing my surgeon next week for my  6 month check up so will ask him about that when I see him .
I also don’t have Lymphoedema as yet, I’m trying to put things in place to try and prevent it happening. My arm does feel fatter at times , I just try and do as much as I can to make myself as comfortable as I can. Once I have lymphatic massage that helps bring the swelling down quite quickly, so try and visit every 4 weeks.I found swimming doing mainly breast stroke, I couldn’t do over arm as I broke my shoulder. Haven’t been in the pool for awhile due to Covid19, so looking forward to getting back to that as soon as it is safer. Can’t wait for a lymphatic massage as well.

Take care xx

Abbydog

Nice to hear from you. My seroma took 5 drainages before it settled. I didn't think it would ever stop. Have you not had any physio due to Covid. It is a concern. The place I go to isn't at all crowded. I'm being reviewed now in 4 weeks. 
Are you on chemo too?  I'm a little anxious as our COVID rules relax, and looking forward to a near normal future.
Some people at the shops just don't distance properly.

Bye XXX