We recently published the Life after cancer: dealing with health conditions after cancer blog. Sharing experiences from our forums and guidance for adjusting to a ‘new normal’ after cancer. But what if you are living with cancer alongside health conditions such as lymphoedema? This blog features lived experiences and support information to help you manage your lymphoedema.
Living with cancer alongside other health conditions can be difficult when you are already dealing with the emotional effects of cancer. Speaking to your healthcare team for advice and talking to others with similar experiences can help you find coping strategies that work for you. Lymphoedema is a condition that many people live with after cancer treatment. It can develop months or even years after cancer treatment, and it’s something our Community members talk about in our forums.
“My husband developed it in one leg firstly after his 33 rounds of whole pelvic radiotherapy and then again after his 6 rounds of docetaxel. He also developed upper abdominal fluid build up towards the end as a result of the cancer in the lymph nodes in that area.”
Community member, Prostate cancer forum
“To top all this and other issues, his ENT team found a lump in his neck. After a scan, and an anxious wait, we were told the lump is an oedema, a result of his regular lymphoedema flare ups. Apart from the above, everything is fine and dandy at our end.”
Community member, Head and neck cancer forum
“Just been for my final surgery check up and been referred to the lymphoedema team as my arm swells up a little. Had ultrasound of my armpit and they drained some fluid.”
Community member, Breast cancer forum
If you are living with lymphoedema we have information and support for you. Macmillan has information pages about understanding Lymphoedema and managing lymphoedema. The forums are also good places to chat to others who are living with lymphoedema. Join the Lymphoedema forum today.
Here are some tips Community members have shared recently.
“I’m now wearing compression stocking for aeroplane use, and my legs are feeling the benefit immensely. So I’m on the right track.”
Community member, Prostate cancer forum
“I developed lymphoedema and found the massages that the specialist nurse demonstrated and the compression garments and kinesiology tape she recommended are at last starting to have an effect. I use a lymphatic brush for massages which is soothing and reduces the feeling of tightness but it is still ongoing.”
Community member, Head and neck cancer forum
“Initially he was given diuretics but the advice from the doctors was to raise the leg when he was sitting down but to make sure that he moved around every hour. GENTLE massage along with keeping the leg moisturised in order to prevent the skin splitting. My husband's osteopath was trained to do lymphatic drainage which helped - she usually started at the shoulders and then moved down the abdomen to the groin until finally gently massaging the legs. Compression stockings were also recommended.”
Community member, Prostate cancer forum
"Hi everyone. I had a lumpectomy and full node clearance in 2021. Later developed lymphoedema in my left arm which my wonderful lymphoedema nurses helped to get under control. I now wear a compression sleeve and glove every day, which is effective as long as I don't lift anything heavy or overuse my arm."
-Community member, Lymphoedema forum
If you need some guidance, you can always speak to the Nurses here at Macmillan. You can call the Macmillan Support Line on 0808 808 00 00 from 8am to 8pm, 7 days a week. Alternatively, you can post your questions in the Ask a Nurse section of the Online Community. Here is some information from the Nurses in the Ask a Nurse section:
“The lymph nodes are part of our body's drainage system. If you have had lymph nodes removed, this can affect the natural circulation and drainage of tissue fluid from that side. If your symptoms are caused by lymphoedema, you can ask if your team can refer you to your local lymphoedema service or specialist for assessment. They will be best placed to advice on what might help at this time, including any exercises, special compression garments or massage/drainage.”
Macmillan Information Nurse, Ask a Nurse section
“The Lymphoedema Support Network have a helpline, information and several videos on self-lymphatic drainage and exercise, but it is important to get a proper assessment before attempting any form of self-treatment.”
Macmillan Information Nurse, Ask a Nurse section
To access support from The Lymphoedema Support Network, call 020 7351 4480 Monday to Friday – 10:00-13:00. There is also useful information on their website.
Are you living with lymphoedema and need support? Start a discussion thread in our Lymphoedema forum to share your personal experience and get support. Once you post, others can come by to offer support and share their personal experiences with you.
