Lymphodema 3 years after surgery

Three years ago i had lymph nodes in left armpit removed and masectomy.
My left arm has recently started swelling and my clothes feel tight in my upper arm.
I managed to find a specialist physical therapist near where i live but she can’t fit me in until one month from now.
I looked online and found some self lymphatic drainage massages to do watching a physical therapist . My arm feels better afterwards but it soon swells up again.
I wonder if i am doing more harm than good.

Everywhere i look it says that the earlier treated the better.

Do you think i should continue to do the self massages? Should i try to find someone available sooner, even though it will mean a one hour drive away ?

I am quite upset at having lymphodema since i am petite and active, go to gym classes… i really wasn’t expecting this.
Thanks for your reply.

Hi @UmLydia so sorry to hear of the swelling in your arm. I had a mastectomy in September 2022. 28 lymph nodes removed. I constantly feel tightness in my operated arm and have been going for manual drainage massage as a preventative measure. I find that the relief only last a day or two and the tightness returns. It seems that manual drainage massage is a long term ongoing treatment. So far I haven’t had lymphedema yet (knock on wood). Like you I am petite and I walk everyday. Have you thought about getting compression sleeves? My therapist strongly recommends it as I was told it would help with the swelling. Hope the above helps.

Hi UmLydia

Thanks for your post. It’s understandable that you’re upset about developing lymphoedema when you did not expect to and the difficulty waiting to see a therapist.

Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body. This can happen as a result of damage to the lymphatic system following surgery and/or radiotherapy to the breast or armpit (axilla). Sometimes it can be caused by cancer cells in the lymph system or when having chemotherapy.

It’s not clear why some people develop lymphoedema and others do not but lymphoedema can develop soon after treatment or may occur many years later. However, we know that people who have had a sentinel lymph node biopsy only, have a reduced risk of developing lymphoedema compared to people who have had a number of lymph nodes removed.

Symptoms of lymphoedema include swelling in the arm like you’ve described, as well as in the hand, fingers, breast, or chest wall on the side of the body where you had your surgery. The arm can feel tight, as you say, uncomfortable, and the skin can become dry.

You ask if self- massage may cause more harm than good. It is possible that massage can make swelling worse if it is done incorrectly, so it’s important to find the right information online if you feel you need to continue to do this. Jen Mckenzie is a breast cancer physiotherapist who specialises in lymphoedema management and has produced some videos which you may find helpful.

However, the sooner you can be seen by a lymphoedema specialist or physiotherapist, the more successful treatment may be. As @Siggi says, your therapist will then be able to guide you towards the correct treatment and assess whether you require a compression sleeve. They are also able to teach you the correct way to perform self-massage techniques so you can do this at home.

Without treatment, lymph can build up in the tissue and may cause you more discomfort. Because of this, it may be a good idea to ask whether it’s possible that your appointment can be brought forward, or for you to look to find another specialist who may be able to see you sooner.

The Lymphoedema Support Network (LSN) are a charity who support those with lymphoedema who may be able to offer further support at this time. MLD UK also have information and a list of specialists across the country who perform Manual Lymphatic Drainage which may be helpful.

Our Living with lymphoedema booklet explains more about what can be done to help. You may also find it helpful to listen to our podcast Living with lymphoedema or read about top tips for managing lymphoedema from someone who has lymphoedema.

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

For more details about all of these services, please see the information on the link.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

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Addie

Breast Care Nurse

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