axillary clearance -help!

Hello,
I had mastectomy and SNB 5th October unfortunately it was found in the nodes and I have to go for axillary clearance 2nd Nov. Obviously worried as I found the first op really painful and my skin is so sensitive on the chest wall but slowly improving. How is this going to be different, is it going to hurt more and what about arm movement and lymphdema?

Hiya , relax …

I have had mas and clearance 12 days ago and i am fine, U do get some nerve pain but its very dooable. I am aware of the risk of lympodeama but its a bit of a lottery , we can only do what we can to prevent it . I have had very little pain apart from the occassional nervr pain that is bl**** sore…lol

Take care

Lorna45

Hi there

Sorry to hear you’ve got to have further surgery. I had my double mx and axillary clearance all at the same time so different from you in that respect.

I did find my arm felt very strange afterwards. I had all sorts of strange sensations - tingling,shooting, very sensitive to touch. But all of this passed with time.
Also I had a lot of difficulty raising my arm immediately after but just stick with the exercises, do them every day and it’s amazing how the movement comes back.

Lymphodema risk - remember that most women don’t get it. Unfortunately, I did get it mildly but better that than cancer in my book.

You will need to do various things to reduce your risk of lymphodema after surgery and BCC do a leaflet on it.
I’m also putting in a link to The Haven. If you’re near London you might like to go to their classes. I’m to far away but they do have their factsheet and also the clip on how to do exercises to help prevent lymphodema which is excellent.
You will see all this further down on the page on this link:
thehaven.org.uk/how-we-can-help-you/lymphoedema

Hope the surgery goes well, elinda x

Hi

Just to reassure you, I had full clearance three and a half years ago. It does feel weird afterwards, and the area felt numb for a long time (that does feel strange)although it is back to normal now. If you do the exercises and use your arm normally (just don’t lift heavy weights for a while) it will be fine. I was out ten pin bowling yesterday and never give it a thought. It’s my right arm and use it just the same as I always did.

Mal

I forgot about the numbness. I still have a small area of numbness at the top of my arm and shoulder 2 years on but honestly it doesn’t worry me in the slightest.

The important thing is not to start doing anything heavier with the arm than you’re used to. That would increase your lymphodema risk. I remember one woman on here who got lymphodema years down the line after lifting heavy things to move house. It’s easy to be complacent but please always be careful and follow the advice from BCC and The Haven.

Elinda x

Thank you all.
It’s reassuring to know that things do go back to “normal” with time. I guess I’m just worried as I really need the use of my affected arm/hand for my job. I love my job and just need to go back to work once this terrible journey is over.

It is very strange to feel numb and swollen. I took quite some time to get used to it but I am much better now three months later. I lift weights and do most activities of daily living. My Hickman is the thing that stops too
much activity.
When I had my op I had very little discomfort. No extreme pain and had nearly a full range of movement .
I so hope you will find it as easy. I am glad those six out of twenty two nodes were in the bin. They did their bit but their removal was needed.
Cackles big hug x

HI 1234 - I’m sure you’ll be able to go back to work. Maybe have a chat with the helpline if you’re concerned about the particular type of work you do.

Everyone is different and we all recover at our own pace. I had a full range of movement back about 6 to 8 weeks after the operation. I remember feeling quite worried after about 4 weeks when I still had difficulty lifting my arm up but I continued with the exercises and then all of a sudden the movement got better. I find that keeping up with the stretches every day particularly the walking fingers up the wall(even now 2 years on) gives me better arm mobility.

With regards to the risk of lymphodema, my understanding is that you should be able to use the arm for your usual activities as normal. What you need to be careful about is new activities or prolonged use of the arm. If you wanted to start up anything new like weight lifting then you’d need to get a trainer who understood lymphodema risk and do it very gradually.

This is a really good article which is about a study on weight training and lifting etc:
lymphnet.org/d/?q=node/2

May I make a suggestion? If I was in your position I would start doing The Haven exercises now every day. It will be much easier for you to monitor your own progress afterwards and will avoid the stress of trying to work out how and what to do exercise wise after the operation. The video is good because it means you can actually see what to do which I found better than a leaflet.
take care, elinda x

do the exercises… and dont worry about how many weeks it has been… we all heal at different times…
I had my ops in feb and march and i still have a fair amount of numbness, on the inside of upper arm and my side/back… But my hubby strokes it and I get a nice soft tingle at times which is exciting!!!
Lympoedema… well I lucked out and am typing this in my nice compression glove!my tip on how not to get it… dont lean on the top of a plastic paint pot lid…
Good luck x

Dear All - has anyone else had the same as me?

I had lumpectomy and treatment 2009 (chemo and radiotherapy) on right breast with 15 nodes removed underarm of which 1 was cancerous. March this year (2011) recurrence underarm in nodes, apparently on other side underarm where they removed the first lot! 6 nodes removed of which 3 were cancerous. Just finished chemo and now on Tamoxifen. The problem I have is that a haematoma keeps forming underarm (full of blood)and I’ve already had it drained 7 times and now needs doing again! Help! How many times will this happen or is it because I was on chemo and now I have finished it should start to absorb into my body or will I need another operation to close the pocket which is letting in the blood. Any comments would be appreciated. Ginnyx

Hi Ginny

I haven’t had the same as you but I had a double mx and had lots of problems with seromas. These stopped first on the right side but then I went on to develop a haematoma and that was 6 months after surgery.

I am convinced this was due to both the chemotherapy and the tinzaparin I was on (I’d developed blood clots in my arm). After I finished chemo, I had the seroma drained and then the haemotoma drained and they never came back.

I think things can just take much longer to heal when you’re on chemo. Hopefully, if you finished chemo, once you have it drained again it will resolve.
I don’t know about closing the pocket - you’d have to take the advice of your surgeon I think on that one.

good luck, elinda x

I am 2 days post clearance I have needed no pain relief since yesterday morning I have good movement on my arm but still have a drain in so be prepared for that pain was doable and feel good numbness on arm is weird more than painful so don’t panic all of this is doable for us woman

Hi strongwoman,
Good to hear u r recovering well as I am due mx and full node clearance on 8 th Nov. I am really worried about the effect on my arm as I work as a gardener so it’s good to hear positive posts,
Take care,
Herbi

I am so pleased to hear the positive responces, sounds as though life does go on !!
Still really worried about my op on Weds, feels as though it’s a step backwards as its 4 weeks since my mastectomy.

I’m almost 8 months out of mastectomy and node removal and now have what they term post mastectomy pain syndrome. My chest, upper arm, back and armpit are still painful and my only hope is that I heard from someone that had lung surgery and he said it took 2-3 years for the nerves to heal. I am hoping. I consider myself lucky to have had a stage 1, grade 1 IDC, no rads or chemo, but this pain is very depressing. I take 20mg nortriptyline but think I may try neurotonin as I don’t like some of the se of the nortriptyline (low blood pressure and dizziness). I do have full arm motion. But boo to the nerve pain!!!

1234
Honestly the pain is ok can move arm up to head already so don’t panic I know everyone is different but honestly I feel no different than the other op apart from the drain Will think of you