Joan's Story

The Happy Ending

Joan has successfully controlled her lymphoedema (secondary to breast cancer treatments) with a combination of low level laser therapy, exercise and compression. She is now able to do all the energetic activities she enjoyed before the cancer and more. She is back at work, commuting by car and flying long haul; she works out at the gym, trains with girlie weights, uses kettlebells, dances Zumba (badly), does Nordic walking and fly fishing; she looks after her dogs, cooks over a hot stove and has just created the big veggie garden she has always wanted. Her affected arm is only 5% bigger than the other arm and that means it is only little bigger than normal for the dominant arm. She does still have some truncal lymphoedema but that too is much smaller and softer after low level laser therapy.

The Nasty Bits Beforehand

The Breast Cancer

Joan was diagnosed with breast cancer in April 2007. Node testing failed to identify a sentinel node and so she had a total axillary clearance alongside a wide local excision of the tumour. Unfortunately there was some pre-cancerous tissue at the edge of the wound and only 6 lymph nodes were found (normal people have 15 – 30). So the surgeons went back to clear the breast and re-examined the axilla to see if there were any more nodes – there weren’t! She had a huge seroma as a result of the surgery and no one admitted she already had breast, chest and shoulder lymphoedema for nearly a year.

The Lymphoedema

Joan had a taxane chemotherapy treatment which often causes fluid retention. She noticed her hand swelling at the end of August 2007 after 3 out of 6 cycles of chemo and was told some gentle compression would help – but not where to find any herself nor offers of a referral to a therapist. By time she started radiotherapy in October 2007 she was clinically depressed and the lymphoedema was still untreated and getting worse. At least the surgeon had stipulated no radiation to the axilla; only to the breast and supraclavicular fossa (this is now the recommended NICE treatment but the oncologist was hard to convince at the time). The radiologists arranged for Joan to see a nurse who mentioned a non NHS therapist and Joan was able to visit her in November 2007. This proved the turning point.

The Treatment

Joan’s reading had led her to see lymphoedema as a life sentence only marginally less awful than the idea of cancer as a death sentence. She was afraid that compression, daily massaging and progressive swelling plus lots of ominous warnings about avoiding exertion had effectively ended her career and condemned her to a lifetime of day time television. Anne, her therapist, showed her that compression sleeves, if worn all day every day, can reduce the symptoms though they don’t treat the cause and need not be forever. The goal of not having to wear a sleeve at all spurred Joan on to stick with her sleeve. She also joined a cancer rehabilitation gym class and found sports professionals much more encouraging of strenuous exercise including “forbidden” fruits such as the cross-trainer, rowing machine and weight training. She tried MLD and bandaging but couldn’t combine the time it takes and incapacity with the return to work that she needed to beat the depression.

Then her sister, Jennie, in Australia told her of women who had beaten lymphoedema with the help of laser treatment. Joan soon found a few UK examples as well and looked around for a therapist to treat her. There was no one accessible so she started researching lasers to buy. Only the Raincorp LTU-904 had any clinical research to show that it worked – and how to use it. So in March 2008 Joan imported an LTU-904 from Riancorp and began 6 weeks of treatment assisted by her husband. The chart shows her progress: the dotted red line is the trend – swelling does go up and down from week to week but overall 6 months later the trend is very much downwards.

Excess Arm Volume Chart

The second chart shows the circumference of the right arm in September 2008 compared to the circumference of both right and left arms in November 2007. The points measured at 4cm intervals show how Joan’s regime has reduced the swelling from her wrist up to just above her elbow. The swelling that remains is in the upper arm where it is less noticeable.

Right Arm Shape Change

A Word about the Cost

What price would you put on being healthy, being able to do the things you want, looking your best, feeling good about yourself?

When Joan bought her LTU-904 it still felt like a leap in the dark as she didn’t know anyone personally who had benefited from using it. And an expensive leap in the dark at that.

However, Joan did find other users and therapists and she has created a Facebook Group so that people controlling their lymphoedema can share successes and insights however they keep it in check. And as to the cost, to put it in perspective, a trip to one of the German or Austrian clinics for MLD and bandaging would cost £6,000 for the 4 weeks they recommend; a trip to Adelaide, Australia for laser treatment there for 3 weeks would be more than £3,000 in fares and hotels before you add in the cost of the treatment. Owning an LTU904 for a year works out about £5.97 per day i.e. a bit more than a couple of posh lattes, slightly less than a couple of beers, a lot less than 20 cigarettes.

And the LTU940 will last 4 to 5 years before it needs a battery pack replacement so you could argue the cost is less than £1.50 per day (and battery pack replacement is quick and easy, whereon it will go on for another 4 to 5 years). And now you can rent an LTU-904 from M.Day Lymph Advice Limited and effectively try before you buy.

So if you are looking to invest in effective treatment for your lymphoedema, contact us for more information or just to talk through how low level laser therapy can help you.