Tweets from ESL (1) - Lymphoedema is common

[LVASurgeon]

@Oxford OLP

Sep 25

Lymphoedema prevalence around 2% in Europe ‪#lymphedema‬ ‪#ESL‬

@Oxford OLP

Sep 25

Lymphoedema affects up to 42% of women after ‪#breastcancer‬ treatment ‪#lymphoedema‬ ‪#ESL‬ ‪#screening‬ ‪#prevention‬

These tweets relate to an excellent presentation from Karel Benda from the Czech Republic, using data from his own studies and also from the literature. He provided estimates of the frequency of lymphoedema after treatment for various cancers. Though the precise figure will depend on the exact treatment received for each cancer, the data provides reasonable estimates that are useful for patients and their treating physicians.

Breast cancer: 20-42%

Gynaecological cancer (eg womb, cervix): 8-32%

Urological cancer (eg prostate): 21-50%

Head and neck cancer: 75%

Melanoma (skin cancer): 47%

These rates of lymphoedema are high, much higher than surgeons and oncologists treating these cancers realize, I suspect. This illustrates the point that lymphoedema is an unmet clinical need in cancer survivors. Many of our patients say that the lymphoedema is a daily reminder of what they have been through in their cancer treatment – some say it is worse than having the cancer itself. As a medical profession, we need to address this need with effective treatments……. More about treatments in an upcoming post.

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[Rebec]

I went to a lecture about the new treatments available and my clinic is going to use a laser machine together with the normal MLD that they normally provide. In my opinion, what has to change is the pre-operative presentation of cancer treatment. Cancer sufferers should be told before the operation about the lymphoedema as being a side effect of damaged nodes being removed. This way the patient doesn't discover only after the operation that by the way, they have developed a life long problem that needs addressing every single day of their life.

[JMP123 in reply to Rebec]

I could not agree more! This is a side effect that requires more information for pre op/ radiotherapy patients. I had a WLE & Rads and now have Lymphoedema in the op area. Following bouts of Cellulitis I am on Penicillin for the foreseeable, future: a year minimum. I was diagnosed with breast cancer Nov 2013, early stage had a WLE & 4 Clear Lymph Nodes removed & Rads. Professor Mortimer diagnosed Lymphoedema & Cellulitis in October 2014. So, no not enough information is provided I feel on prevention.

JMP.

[warren20]

A lot of this seems like blind people groping in the dark. So many studies, so many papers being funded and written - where are the answers? Do we just have to give up and say the Lymph has got us? Sorry I am not a scientist or medical researcher, perhaps there will be a breakthrough, but only if people are concentrating on the right things? Also, many sufferers do not have and have not had cancer, putting this together is wrong, and the research should be separate, in my opinion.

[Butterfly-lady in reply to warren20]

As a non-cancer related Lymphoedema sufferer I agree.

I am encouraging people to do as I have done

1) contact your MP and enlist their help

2) Contact your local Clinical Commissioning Group (CCG), who responsible for provision of care with either a letter re why treatment is not available in your area, or actually ask the question at one their regular public meetings, they should have a space on the agenda for questions from the public or Any Other Business.

In regard to 1) and 2) the Lymphoedema Support Network sent me an Advocacy Pack which included template letters to your MP or CCG, you could either request the pack from them or I can email you scanned copies of the two letters.

email me at [e-mail]

3) Contact your local council Health and Well-being Board, a fairly new committee and ask them why treatment is not available on the NHS where you live.

If everybody on this website wrote to their MP, it would cause it to become an issue and this could result in a question to the Prime Minister or Minister For Health, it just takes sufficient pressure, not by a petition but individual voters.

Ask friends and family to write to their individual MPs as well.

Also you could find out the names of the parliamentary candidates of the main parties who are standing against your current MP at next year's General Election, your local party offices can tell you how to contact them, and write ti them also. My Labour candidate is supporting me, though to be fair, so is my current Tory MP.

Susan

[nan2high]

I had a lumpectomy and a sentinal node removed, subsequent radiotherapy caused burning to left breast & midriff. Lymphoedema was later diagnosed which has now spread to my left side, breast, stomach and leg which is now 25% larger than the right. I had none of this before the radiotherapy. Radiotherapy leaflet given prior to treatment mentioned possible lymphedema of the arm.

I am now quite disfigured by the treatment and the side effects and altho' glad to be alive am not happy with the prospect of further daily treatment in a deteriorating situation.

[LVASurgeon]

Thanks for these comments, they are really helpful and I am glad that people are interested in my posts. I agree that there are a lot of primary lymphoedema sufferers out there, and they can have the most difficult problems. Also, secondary lymphoedema doesn't have to be caused by cancer - worldwide, the commonest cause is infection (filariasis).

Cancer patients should be told about the risk of lymphoedema before surgery, chemotherapy, and radiotherapy, but often they are not. In fact, many of my patients say that their cancer doctor (or surgeon) wasn't concerned about their lymphoedema, as long as the cancer was cured. We are gradually changing attitudes, but it takes a long time.

Look out for further "Tweets from the ESL"

If you would like to follow me on Twitter, please search for @OxfordOLP.

There is also a lot of information available on our website olp.surgery