Lymphodema fears

Hi everyone,

Last month I had a mastectomy (left side only) and SLNB, upon which cancer was found in all 4 nodes removed. I’m been advised to have a full axillary node clearance, and surgery is booked in next week. 

My surgeon and breast care nurse have explained there is a possibility of Lymphodema occurring from this procedure, and it’s really worrying me. 

I’m in my early 30s and UK size 8. I know it may sound shallow, but I love my long, slim arms. I have beautiful tattoos on my at risk arm, and to be honest the thought of it becoming swollen and enlarged hurts me more than losing my breast has. I feel able to cope with being flat on one side for the rest of my life, but I don’t think I’ll cope at all if I get Lymphodema in my arm. 

I know there is only a 20% chance of it occurring, but I only ever hear about the people it does occur to. Are there really women out there who have had axillary node clearance and never developed Lymphodema? 

Apologies for sounding so self-pitying. This surgery may go on to save my life, and for that I am entirely grateful. I just can’t shake the risk of Lymphodema from my mind right now. 

Thank you for taking the time to read my post.

Take care,


Hi was diagnosed with lymphodoema 11 months after surgery it is barely noticeable . Unfortunately saving our lives means things will never be as they were and if there is spread to nodes it is unavoidable - you may not even get it so try and focus on your recovery - easier said than done I know x 


I had a mastectomy and full axillary clearance 18 months ago. 19 of my 21 nodes were infected but there’s been no sign of spread detected so thank heavens for wonderful lymph nodes :slightly_smiling_face: The outer part of my upper arm is usually a bit numb from severed nerves and I have exercises/self-care to do daily to prevent lymphodoema and it’s just part of routine now. Like you I was a dainty size 8 at the time and dropped well below during chemotherapy (not good) but you may have to resign yourself to some weight gain when you begin hormone therapy. I’m now size 12, which feels pretty alien to me, but it’s a small price to pay for being cancer-free, in my book.

Have you by any chance been using Google to learn abut lymphodoema? It is one of the biggest causes of terror in breast cancer and should be avoided throughout your whole treatment. It simply doesn’t know your individual circumstances, generalises and sow seeds of doubt and fear. If you do your breast exercises and ask your breast care nurse for advice on how to massage your arm to the nearest working lymph system (waist, spine, sternum) to prevent any build-up of fluid, you’ll be fine. Even at size 12, my arms look no different from before. 

Btw, I don’t think it’s self-pitying focusing on lymphodoema. It’s self-preservation. While you are worrying about this, you have less time to think about the realities of what’s happening in terms of surgery, losing a breast, probable treatments ahead. It’s a sh*t thing to happen, especially at your young age, but try not to get things out of proportion- and do avoid Dr Google. The nurses on the phones here are far better at answering questions!

All the best with your recovery,

Jan x

Hi MB - first of all a big hug coming your way. You don’t sound shallow at all, please don’t think that. I had a mastectomy and node clearance about 3 years ago and I was also terrified of lymphoedema. I read everything I could find, not always helpful, and grilled my doctors endlessly, so I do understand your fear. I hope I can reassure you a bit.

From what I have read and been told, there doesn’t seem to be a definite reason why some people go on to get Lymphoedema and some don’t, but there are things you can do to minimise your risk. Your medical team will go through these with you I’m sure. I was told to avoid getting an infection in my bad arm, so be careful to avoid cuts and bites on that arm, and avoid getting burned by the sun or hot water. If you get bitten/scratched, treat them promptly and if an infection sets in ask your GP for antibiotics. Also avoid carrying heavy things with your bad arm, and repetitive actions for too long. If you carry something heavy, or get bitten, it doesn’t automatically follow that you will get lymphoedema so don’t become as obsessed as I was in the early days. You may even get some swelling, but it may go down and just serve as a warning to take care. I believe keeping your arm active is good, so arm exercises as Jan says should help.

I also want to reassure you that if you are given hormone treatment you won’t necessarily put on weight. Everyone reacts differently, but so far my weight has stayed the same. 

Good advice from Jan - to call the nurses on here to discuss this further, or ask your own medical team, BCN or consultants. I asked anyone and everyone! 

All the best to you for your treatment and recovery, and I’m happy to answer more questions if I can help at all. I may not have explained things very well, so please ask if I can elaborate at all.

Evie xx

Dear MB,

I hope you are recovering well from your surgery and starting to enjoy a new normal. What you are saying is not shallow at all. If anything, I think these kind of worries mean that you are resolved to live long and well…and that’s the “right” attitude!!

I had all nodes on the right side removed earlier this year (I am right handed) in March and lymphodema is also something I worry about -  it doesn’t help that my medical team does not seem very concerned with it (“just let us know as soon as you notice something”). Fortunately, now that I am picking up my life again, the worries have been going to the background. Yesterday, I went running for the first time in ages. And I was anxious about the bra restricting that part of my body. Today, I realised I can run without a bra thnx to my teeny breasts XD Anyway, small stuff like that.

I am the kind of person who scours the internet for research - to each their own. But indeed, I found that they really don’t know why some get it and others don’t, or even what triggers it. A lot of research still need doing on complications after breast surgery of this type - lymphodema and cording as well. So, although it is normal that we should be worried, it is not going to change anything…And if we end up never getting it - all that worrying was for naught ;D

I do a few things placebo-wise that I convince myself will help (I love tai chi, yoga and cold showers for good circulation). I also looked up a video on lymph drainage massage by a lymphodema association (so great to read others got help with this from their medical team!!) - I figure that any type of exercise and massage that helps for people who already have it, is probably a good indication of how to make it easier on our body to deal with the lymph without the nodes, even if it is still coping without swelling.

That is how I deal with it - in no way meant by the way to sound like “you should do this or that”. Just the stuff I tell myself ;D. Be well XXX

I’m going to send you a link for exercises as shown by the professionals at Teesside team ok 

I am a size 08 also but hospital didn’t recognise lymphodema. 

I got an infection about six weeks after masectomy right breast.

It was round my back where lungs are so was treated with strong anti biotics 

Which cleared that issue.

The arm problem it being my right one is difficult 

Can’t blow dry my hair or anything normal been referred to hospital rehab. Which is a physiotherapist, one on one I have bought a shoulder pulley for over the door as she has advised me too.

She said I must exercise the arm for a year.

So apart from the rehabilitation, section who are trying to get my right arm moving properly. And the vest from lymphedema team at hospice. 

The hospice is only because that’s where the treatment team are for Lymphedema. 

She has purchased a vest too smooth my back excess fluid it’s not noticeable and she has to use a machine to check. 

Also we do breathing exercises as just where your breast bone is where your breathing exercises need to be done to expand your chest as those nodes lead there. 

I  can’t progress as after pneumonia and infection in chest my body is not fit enough to progress to next stages of recuperation/ treatments