Developing lymphoedema after breast cancer surgery: a personal story

When lymph nodes are removed during breast cancer surgery it can increase the risk of developing lymphodema. In this article Liz tells us about her experience, what she does to manage it and the treatment she has received. Liz’s experience shows the limitations of treatment available in some areas on the NHS and the way that patients often have to resort to private practice that they have to pay for themselves. We ask you to note that the treatment of lymphoedema varies depending on the hospital and NHS Trust and it is important to discuss your options with your medical team.

By Liz

Breast Surgery

In March 2021 I underwent a wide local excision and full axillary clearance of twenty three lymph nodes for a grade 3 breast cancer that was on my chest wall. It had been found incidentally during a CT scan that related to another health condition that was producing symptoms.

Recovery

Recovery from surgery was slow and I had two troublesome seromas that took time to settle. Several trips for drainage of the seromas took place. Breast oedema was present and the whole area was bright red.

Two lots of antibiotics failed to settle things and a third was necessary when my breast scar started to swell with lymphatic fluid and then this resulted in the scar re-opening and bursting.

How yoga can help lymphoedema – Future Dreams

Yoga is emerging as a valuable tool in managing lymphoedema. Unlike the circulatory system, the lymphatic system relies on body movement for optimal circulation, making yoga’s emphasis on gentle, repetitive motions and deep diaphragmatic breathing particularly beneficial.

Exercise

Everyday I religiously followed the post-surgery exercise regimes that we’re taught to do after surgery, but the remaining breast tissue was still swollen, tender and pink. This continued for a further five months. The exercises helped considerably.

However, I was still struggling so sought help from my Macmillan nurse and she said it would be best to gain expert support from a nurse trained in this area of expertise so referred me to the specialist lymphoedema nurse at our local hospital clinic. This service is offered at our hospice centre but there was going to be a wait of around a month due to a backlog of cases because of Covid.

In the interim wait, I asked if there was anything else I could do or access in the meantime. Aside from the light exercise and manual lymphatic drainage, I was told that the best option would be treatment from a trained nurse. She told me about a nurse who offered private practice sessions and was reputable as she’d been the senior nurse at our local hospital prior to her retirement. I called her and within that week I was there having treatment.

Treatment

The relief was almost instant as she explained the issues surrounding lymphoedema. I also had a fungal infection which was causing further irritation and I was advised to use some appropriate cream and powder from the pharmacy.

Infra red light therapy was used and some kinesiology tape was applied over the next few appointments. Unfortunately I could not have the electronic deep oscillation lymphatic treatment that is more widely used, due to my heart condition. The waves could affect my already present permanent arrhythmia and it is advised not to use it on people with my condition. However all was not lost and the manual drainage brought relief.

I was shown how to do this at home too. This involved sweeping but gentle hand movements that rippled against the skin and pushed the lymph fluid across my breast and chest. I was told this encouraged the lymph fluid to move to the nodes on my right side. I do this ten times, three times a day.

What you need to know about lymphoedema after breast cancer surgery

This is very important to read if you have had any lymph nodes removed. Your surgeon and nurses will explain the risk of lymphoedema to you when you are in hospital for your surgery. But, as with a lot of information which is given to you right now, you may not take in what they say. 1. With fewer, or no, lymph nodes in your…

My nurse also gave me an excellent lymphoedema ball to use with special exercises. This included squeezing the ball in my hand, five times in each hand and then placing it under my arm where the axillary nodes had been removed and using a lever action I had to move my arm up and down on the ball for up to ten times. This brought huge relief to the numb sensation and the feeling that I’d got a golf ball stuck inside my armpit (this feeling built up throughout the day and was worse at night).

My husband was also taught how to support me with manual lymphatic drainage across my back and upper arm. Again, this involved gently massaging with a pushing, sweeping ripple effect to encourage the excess fluid away from the are where there was a build up of fluid. We completed this religiously morning and evening.

NHS treatment with private treatment

My NHS appointments began just prior to Christmas 2021, after a six week wait. I continued with my private treatment too as both nurses assured me that attending both would only be helpful.

At my NHS appointment, measurements were taken of my arm and breast. I had some slight upper arm lymphodema but the main problem was in the breast tissue. I had breast lymphoedema.

I was also given two foam Schnieder pads to place inside my bra. These are a bit like fabric bubble wrap and they apparently lift the nodes under the skin and allow for drainage. They really do bring relief too.

I also invested in some better quality bras from Theya healthcare. They are bamboo cotton and breathable. The comfort they brought compared to the shop bought post surgery ones was noticeable.

Twice a week I attended my appointments for low level light therapy and manual lymphatic drainage. There was slight improvement week on week. The light therapy involved a machine with a small lamp head at the end that was held over the affected area for short bursts of time. Initially, treatment was limited as I was advised that I had a fungal infection lingering under my breast tissue and so I had to get some cream from the GP or pharmacy. I did this, and after a few days of hydrocortisone cream we were back on track.

I had several appointments just with the manual lymphatic drainage being completed before full light therapy was given as there has to be no infection present for light therapy.

Sadly, I seem prone to infection (I’m sure that it’s due to my weakened immune system from chemo) and another infection reared it’s head in the form of a regrowing hair in a follicle. Obviously hairs are all lost during chemotherapy and the regrowth of this one was causing inflammation, pain, heat and swelling to my breast. Lymphoedema patients have to avoid cuts, scratches and anything that could trigger an infection in the affected area as the lymph nodes are no longer present to fight it away. So, getting another infection in this area was quite serious.

My nurse wouldn’t treat me at all at that session and insisted I go to my GP for further antibiotic support as she felt I had cellulitis which later transpired to be the case. Cellulitis, if left untreated, can lead to serious infection and affect the deeper layers of the skin and enter the blood stream.

She also asked me to share the ongoing pain I had under my breast with my oncologist at my pending review appointment, which of course I did. Two weeks later and a trip to the breast unit for a mammogram and ultra sound scan, and we were once more back on track. All of the images indicated nothing sinister thankfully. Only active lymphoedema, thickened skin and scar tissue from surgery and radiotherapy.

The nurse proceeded with further manual lymphatic drainage, light therapy and she used kinesiology tape to support my affected breast area. This special medical grade tape is cut and stuck onto your skin in various ways that promote the fluid to take a different route. It began to take effect very quickly.

This whole process has filled me with hope that my lymphoedema was manageable and some relief could be found.

In the last two weeks I have seen a huge improvement and my appointments will now gradually lessen as I manage the manual drainage myself and I can now purchase and apply the tape myself too.

Coping strategies

My top tip for managing lymphodema is to religiously follow your post surgery exercises, access a qualified nurse to support, follow the science and join the supportive Lymphodema Support Network who have a wealth of information. Most importantly be patient and kind to yourself. You’ll get there in the end and any problems remember there is always someone to help and there is much you can do to help yourself too.

An update two years on…

It’s two years since I wrote my personal account of lymphoedema and my breast lymphoedema has mostly remained stable. This is due to:

• I use two very small paint rollers to help ensure that the lymph fluid is pushed across my chest. These can be used instead of hands – my wrists were swollen and painful from the side effects of my medication – and are equally as effective. 
• I have continued my daily exercises with small hand weights up to 2kg and resistance bands which helps ensure the fluid moves and I would highly recommend that breast lymphoedema patients look at good quality You Tube videos by Cancer Rehab PT who shows you how to do it safely. 
• I’ve also been using a specific bra with an expander section that is really supportive and gives the right amount of compression. I can make it less tight using the expander. I wear this at night alongside a square of Mobiderm bra pad which ensured the thickening tissue remained malleable. 
• My husband has learnt how to do manual drainage on my arm and has been so helpful in ensuring this is done day and night.

I have had a minor hiccup. I started to develop discomfort in my clavicle, shoulder and neck area. Using a hand held lymph fluid scanner across the area and taking measurements, my lymphoedema nurse checked the swelling and suggested that I should use a daytime and night-time sleeve that would be made specifically to my measurements. I started to feel some relief as soon as I started using them.

• The nightime sleeve is quite thick and ridged and is supplied by Comfiwave. I’d highly recommend them even though they are expensive. Your nurse maybe able to assist with some support on daytime sleeves via the NHS and Patient choice system now as they supply them at no charge. 
• The daytime sleeve is a lightweight sleeve from Haddenham healthcare. I was pleased to be able to feel a little benefit straight away.

They don’t look aesthetically pleasing but to be honest I was fed up with the debilitating pain and discomfort so nothing else mattered in my mind. I was also checked by my oncology team as a precaution, but thankfully everything was clear.

The pain in my shoulder continued and I tried two more types of sleeves – one with a shoulder cap and attached by Velcro to my compression bra and then a shoulder sleeve with a wider rubberised band at the top of the sleeve and attached to the bra.

Many months on I’m really pleased to be able to say that my arm and shoulder swelling remains manageable and stable. I do suffer pain, pins and needles and discomfort but find it’s worsened by not sticking to an active exercise regimen. Some of the pins and needles can be attributed to the peripheral neuropathy caused by chemotherapy but I take some medication prescribed by my medical team. 

As always I remain eternally thankful for the care and support I continue to have. Lymphoedema will always be a part of my life now but having access to high quality nursing care, resources and a supportive community online ensures that I can continue to find joy in my life and feel not so alone. 

To return to the homepage of our Information Hub, click here where you can access more helpful information, practical advice, personal stories and more.

Future Dreams hold a range of support groups, classes, workshops and events to help you and your carers during your breast cancer diagnosis. These are held both online and in person at the London-based Future Dreams House. There are also one-to-one appointments available with a range of therapists who can help with lymphoedema. To see what’s on offer and to book your place, see here.

February 2022 (Reviewed December 2023)

This article was written by a guest author based on their own experience of breast cancer and its treatment. It is important to note that this is one person’s experience and that whilst there may be commonalities between the experiences of different people, everyone has a different diagnosis/treatment plan/general experience. The information and content provided in all guest articles is intended for information and educational purposes only and is not intended to substitute for professional medical advice. It is important that all personalised care decisions should be made by your medical team. Please contact your medical team for advice on anything covered in this article and/or in relation to your personal situation. Please note that unless otherwise stated, Future Dreams has no affiliation to the guest author of this article and he/she/they have not been paid to write this article. There may be alternative options/products/information available which we encourage you to research when making decisions about treatment and support.