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Hello, 55 year old female. I was diagnosed with breast cancer in March this year. Lumpectomy and radiotherapy completed. I am now worried about lymphoedema

12 Replies

  • Hi Carol - impossible, I know, but try not to worry about something that may not happen. Arm (no pun intended!!) yourself with information, which you can get from the LSN; talk to your BCN's; attend any support groups they may offer; ask questions here! I was where you are now 16 years ago. I have not got Lymphoedema, even though all the nodes were cleared from my left armpit. No one can tell me why - but there is always the 'risk' lurking in the background. It can occur spontaneously or as a result of trauma or infection. But - I have never let the 'what if's rule my life.

  • Hi Carol, I completely agree with the info Lynora has given you, don't worry until you have too!!!! However, we're all aware of swollen arm indicating Lymphodema, so when I developed dry flaky skin in my breast 2 yrs ago ( I was treated for Breast cancer 4 yrs ago) I wasn't overly concerned, but three trips to GP each time getting cream which cleared it up, then it returned ended with my being sent for a biopsy just to be in the safe side, the biopsy has shown I've got exczema, but my breast care consultant carried out the biopsy and as soon as he saw my breast he informed me that I've got Lymphodema, yes it's in both my breasts, so should you get dry flaky skin go to GP and explain your worries about Lymphodema (it may not be,) and ask if you can be referred to a lymphodema clinic in your area, I wish you well x

  • Thank you both Lynora and Jennymary. Your replies have really helped me :)

    I have been suffering with an achy arm, numbness, pain and tenderness in both my forearm and upper arm over the past few days. My radiotherapy only finished last Wednesday (19th July). I put the ache down to having my arm above my head during treatment but despite taking pain killers and doing all they advise you to do I am worried. I have spoken to NHS 111 and currently waiting for a call from the out of hours doctor for an appointment. The nurse I spoke to was concerned for me. Better safe than sorry.

  • Hi Carol - the after effects of radiotherapy don't stop the day you leave the hospital. They continue for weeks - sometimes months and very occasionally, years! If possible, find an MLD therapist who will be able to stimulate the lymphatics, do some gentle passive movements and show you how to do self lymphatic drainage to ease the aches. mlduk.org.uk for therapists.

  • Thank you to everyone who replied. Your help, advice and support has been brilliant. I can't thank you all enough.

    Yes, I did have some lymph nodes removed...

    I finally got a call back from the out of hours Dr with an appointment for 1.15am Sunday morning.

    The advice I received was that due to the radiotherapy there would be possible nerve damage to my arm and was given a prescription to help with this. It was in the Drs opinion that this was what is causing my symptoms. He was very understanding but a GP and not and expert in this field.

    I have a clinic appointment on Tuesday morning at the hospital and have a list of questions to ask. I really don't think I was prepared or well enough informed about the side effects or risks after surgery and radiotherapy.

    I will post an update once I have been to the hospital Tuesday.

  • Hi Carol, I hope that when you get your call back it's nothing serious and easily resolved x

  • Welcome to the gang carol, you will get all the help and support on here so you have came to the right place, there are some very experienced with lymphoedema to get the right advice.

  • Hi Carol, Lynora says about getting information from the LSN. The LSN has a website lymphoedema.org. Lots of information there - and a telephone help line.

  • Hi Carol - all advice here good. A question - did you have any lymph nodes removed? If you didn't, then chance of lymphoedema will be much much less. Hope you're on top of your game soon and all worries will be a thing if the past. Xo

  • HI Carol,I am glad that you are taking your symptoms seriously. If the doctors don't want to check you for lynmphedema I wouldn't accept it. Here in the U.S. they seem very reluctant to want to accept that the radiation can be the cause of lymphedema and want to try to say it's nothing and will go away.

    It makes me so angry that teaching about this is not given to women at the time of surgery and radiation. There needs to be a revolution in expectations from the public! We should be told that any surgery or radiation that goes near your underarm or groin area makes you at risk for lymphedema and you need to reduce your risk by taking care of skin on the arm or leg on the side at risk. Any break in the skin needs to be treated with antibiotic ointment until completely healed. Many women report that a small cut was the start of their lymphedema. We also should know that radiation fibroses the tissues it hits scaring down the lymph nodes and at least doubles the risk of lymphedema. After these treatments the ability of the arm (or leg for pelvic tumors) to manage lymph flow is diminished. This is true for everyone! What happens is that an increase in load that happens from severe muscle strain or even a tiny infection can stress the system to beyond its capabilities. When this happens lymph fluid backs up and in some people who have the right genetics an inflammatory response is triggered in the lymph vessels and they will stop working. The problem is the fluid backing up triggers more inflammatory response. This can be diminished by keeping the load off and fluid reduced with manual drainage and bandaging and compression.

    The most important thing is to catch it and control it early so the worst effects can be avoided or delayed. Symptoms to watch for should be taught to everyone at risk for this reason. Some symptoms are:

    Mild almost imperceptible swelling of the arm or in even a small area on the arm. It can disappear as fast as it came but if it happens don't think it's nothing. If you suddenly think "is my arm bigger?" Don't discount it, check it out!

    Heaviness or aching in the arm can signal something is wrong before swelling happens

    Swellling or heaviness in the breast or trunk under the arm or shoulder blade is also a sign of lymphedema.

    Then, if there are signs of lymphedema the surgeons, radiation oncologists and primary care doctors need to have information of qualified treatment centers to refer us to so that we get qualiity treatment and care.

    If you can, check out OxfordLymphedemaPractice.org. They have great information on their website.

  • Thank you so much for all your information.

    It is a massive help :)

  • Hi Carol, you can get checked to screen for lymphoedema early. I'm a therapist and this is what I do. check out lymphvision.com we are identifying early which means early treatments such as self massage. NIRFLI or lymphofluroscopy mapping can identify before it can be measured. Aching and heaviness are a key signs to development- sorry if that's scary. Unfortunately screening is not on the nhs yet... but it will be with time

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