Breast Cancer Haven
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Lymphedema worries

Hi, has anyone got any advice on Lymphedema of the left breast and armpit following lymph node clearance?

Good luck to all you brave ladies xx

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It’s insidious. At first it is difficult to determine. At least it was like that for me. My lymphedema is mild. It affects my left breast, arm, back and abdomen. I have regular MLD which I hope helps. Hate to think what I’d be like without it. I just started being taped with kinesio tape. I find this makes an immediate difference. I only has my sentinel node removed. Good luck to you. Lymphedema is one of the dirty little secrets they seem to leave out or brush over lightly if spoken about at all.

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Thank you very much for your reply, I am

Seeing a Lymphedema nurse next so I hope I may learn to deal with it,

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That sounds awful, considering you only had sentinel node removed, did you have radiotherapy? As I have heard that can be a side effect . Fortunately I haven’t suffered with it, now 3 years post op, but would warn ladies to take care with injections don’t use that arm, flights etc.

All the best xx

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Yeah not great. Yes I had Radiotherpy. But I did not have a mastectomy. I had a lumpectomy. I had to return to the surgeon several times to have the fluid drained from my breast.

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I had a choice of mastectomy with no radiotherapy or lumpectomy with radiotherapy, it was only when I spoke to friends about radiotherapy who had it, that I decided to go mastectomy with implant and no radiotherapy, as thought side effects for me not worth it. But at the end of the day it is a personal decision, and you are having to make it at a very emotional time. Deb xx

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Hi, I had complete node clearance in my right arm (left arm no probs), during my cancer op in 2013, about 18/12 later after developing dry flaky skin on my right breast I was sent for a biopsy to make sure it was nothing nasty, the consultant took one look and said you've got lymphodema, the biopsy showed I've got exczema, but I was referred to a Lymphodema clinic, where I was diagnosed with the condition in both breasts, it's only mild and not causing too many problems, I do my massaging, and although I'm aware it may develop in my right arm at the moment it hasn't, HU have a Lymphodema forum so it might be worth following that one as well x

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Thanks so much Jennymary for your knowledge, I now understand I need to learn how to massage and find out what movements exacerbate the swelling. I will look into Lymphoedema forum. Best wishes xx

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Protect your arm at all times and moisturise it well.

Also complete massage in other lymph areas so you minimise the swelling

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Hello there . Yes I have the same (3 weeks after the right mastectomy , now) which was like a hot water bottle under my arm and breast area once the drain was removed . My surgeon aspirated 500 mls which was a big relief but now 4 days later it’s coming back . I’ve thought of more exercise e g swimming but only have one soft fabric “ breast” so nothing to change into afterwards as yet , and it would be very noticeable !

It’s unconfortable and yes clearly it can’t go on indefinitely having the fluid removed .. any ideas also gratefullly received thanks e g better or worse to exercise ?? Denizt x

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Hi Denizt

I read somewhere about "knitted knockers" normally they are just filled with toy type stuffing but for swimming use they can be stuffed with a bath scrubby ! Sorry cant remember where maybe a Google search wud show them up !

Diane

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Thanks I’ll look out for them x

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Hi

Just another thought if u r handy with needle and thread u cud make a casing inside the swimming costume to insert a bath scrubby in they don't take long to dry either

Diane

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Hi, I developed lymphoedema in my left arm following breast cancer surgery. If you catch it early there is a lot you can do, unfortunately treatment and good advice yon the NHS is patchy.

A lot of gps know nothing about it. My advice is to join the lymphoedema support network and watch some of their DVDs on the internet.

When you see the lymphoedema nurse if it is found in your arm, ask her to measure your arm and get made to measure sleeves/ gloves which are available on the NHS. They allow 2 every 6 months. If they don't fit go back to get them checked. Follow the guidance on exercise, and I was shocked to find that a lot of the guidance we are given was first produced in the 1920s so don't let it scare you. If you can afford it find a MLS therapist and get regular lymph drainage massage.

Above all remember that this is a condition that can be managed and I was told by a consultant that lymphoedema in the torso isn't as difficult to manage as that in the arms and legs and hopefully the LVA operation will be available on the NHS at some point in future. It can be done privately now but is very expensive.

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Hi Denizt, the aspiration was probably seroma where you are healing, you need to mend. I think I exercised too much after my lymph node clearance and worsened the situation. So I would ask the surgeon or nurse is it Lymphoedema or seroma. Be kind to yourself xx

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Hi. I had lumpectomy and total lymph clearance 2 years ago followed by radiotherapy. The lymphoedema in my right arm, armpit, chest and breast has been an ongoing problem. I massage, exercise and do manual drainage but have had cellulitis and severe Inflammation over radiotherapy site twice. When you go to the lymphoedema clinic, tell them how you are feeling and your concerns. The staff are excellent and very supportive and will teach you how to massage and assist drainage of swelling with exercise. I go every 6 months now and the swelling is hardly noticeable. Kinesiology tape really helps and the pain is much better. I wish you all the best and hope all you lovely brave ladies have a good day. Al xx

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Dear Nic yes it’s confusing whether to exercise or rest it . I notice after a day out walking it’s very puffy or lying on right side ; I guess it’s one thing I didn’t bargain for ; does it take long for the drainage system to find alternative routes. ? Or does it ever happen? X

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It is confusing, but it is what works for you. When you go to the lymphoedema clinic they will measure you and maybe give you compression hosiery to wear on your arm and or chest. They do help and the vest in winter is fab. Exercise the arm and shoulder within your limits and build it up gradually. I sit in the evenings and gently stroke my arm towards the shoulder, only very soft movement which really helps. Ask at the lymphoedema clinic about kinesiology tape, that works well. I hope you feel better soon, it is a tough journey but remember you are not alone.

Al xx

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Dear Nic ..yes I see that there are several different approaches to this . After driving to Winchester and back today , the ex-breast area , side and shoulder sore and puffy again but not too bad at least bearable ! You seem to have found a couple of techniques that help . I’m going to find out where in Bournemouth is a lymphodema clinic , as haven’t heard of any but the BC nurse will probably know . It seems

A bit defeatist to keep getting a mug full of serous fluid drained every few days ! Hope you had a comfortable day today . X

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Hi. I had a load of nodes cleared in my right armpit. No lymphodoema until I took a long haul flight. Must have been the low air pressure in the plane. I wonder if compression sleeves during the flight would have helped.

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Compression may be part of the answer, thank you.

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Hi, same side as me. Full ALNC and mastectomy. Firstly, physio and massage as I also developed Axilla Web syndrome, and have to 'snap' the hard lymph vessels. Clinical measurement for full sleeve compression which I wear at night, or if on feet all day, hand and arm fills due to gravity. No heavy lifting or pulling/pushing actions. No blood pressures or injections. Extra care for scratches and wounds. But, you can have blood draws in an emergency, as chemo and muga damaged vessels in other arm! Keep arm out of sun, use insect repellent, and no manicures on that hand. All risks for infection. Oh and finally, no razors for armpit, use hair removal cream, as area is numb, when your hair regrows. Oh, and I have armpit cramp which is fun! They don't tell you everything at once, drip feeding information to avoid overload, and you may be a lucky one who sails through this stormy sea and comes out battered and bruised, stunned but still standing. Good luck and be proactive, especially with lymph clinics.

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Thank you for all the advice . All this is new. So I’m still learning ! Xx

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Many thanks to all the ladies who gave advice about the lymphodema . Little is said about it after the op but it’s definitely one of the challenges in recovery . Seems better when not up and around busy all day , but gets very puffy and full of fluid . Wishing you all a pleasant day today xx

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I notice, reading all the comments, that only in my city one gets help from nurses that have clinics in the Arthur Rank Hospice. I had lymphoedema in my left breast but it got cleared by having used kynesiotape. I was shown by the nurses in the hospital how to use it and it helped a tremendous amount. The lymphoedema in my left arm is managed with the help of the special sleeves provided through the nurses in the above-mentioned hospice. I also bought a special pump which I should use more often!

It's a daily problem with which we have to live with. I was told that one should put the sleeve straight upon getting up in the morning.

Every person is different so nobody knows how one's body would react exactly.

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