Royal Marsden......is it the best treatment?

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In Feb 1995 a 1cm tumour was removed from my right breast, followed by axilliary clearance where 9 lymph nodes where removed. Fortunately the cancer had not spread and only slight swelling to my arm & hand that didn’t cause any concern.

10 years later returning from a trip to Prague, I awoke to find my arm swollen to twice its size and the hand looking like an inflated marigold glove! I believe that carrying hand luggage over my inner elbow joint had caused this, and not the flight as was thought.

My GP referred me to the nearest NHS Lymphoedema Clinic where I was measured and issued with pretty useless compression sleeves & instructions on SLD & skincare. But the clinic operated only one day a week and appointments were hard to get if problems arose.

As I got to be knowledgable about the condition I decided to search the internet for better treatment, found that my nearby local Hospice had a Lymphoedema Outpatients Clinic. Once again…I was referred but this time I got far better treatment, where I had MLD followed with bandaging therapy. The treatment & the nurse are fantastic but she also serves the ward in the Hospice so her time is limited.

I have been getting repeated cellulitis infections. I had 7 infections in 2008 and 6 in 2007. I was prescribed penicillin as a preventative measure, yet still got infections. At one time just one week after completing a 2-week course of 500mg Flucoxacillin I developed the infection again. I am really fed-up & depressed as it is affecting my everyday life considerably in many ways.

Once again, back to the internet! Upon reading lymphoedema forums my next objective is referral to Prof Mortimer at the Royal Marsden as I understand he uses computer imaging followed by MLD and bandaging therapy. I would desperately like to know has any other patients had treatment from Prof Mortimer & his team? Please let me know, if you can, it would be greatly appreciated.

We all know the danger & shock in discovering you have cancer, but this lymphoedema is worse as it is so dibilitating and distressing. Most GP’s would say we are lucky to be alive after cancer, but having lymphoedema and cellulitis is so life draining & depressive. But we all have to carry on, and carry on I will…seeking better treatment all the way.

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Sorry not able to answer your question, but wanted to say how sorry to hear what you’ve been through. My lymphoedema started a couple months after rads. In the last 6 months months I’d managed to reduce my arm from 33 to 25% (exercise, massage and sleeve) and was so chuffed then 3 days later got Cellulitis for first time. Devastated to find arm basically back to square 1 in one fell swoop. I know how I felt, cant imagine what you must have gone through. I have mets (luckily stable on hormone therapy) and find lymphoedema causes me more problems and anxieties (that’ll change when cancer progresses mind you lol) than the mets. Its also a constant external reminder of what you’ve been or are going through as well.

I hope you receive a response to your question soon.

Take care xxx

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Hi Lynni

I am new to forums, particularly on this subject. I assume when you say mets you mean secondary cancer? If that’s the case then I feel for you, as at least my cancer has been & gone and besides my lymphoedema, I am fit & healthy. I now feel my complaints are trivial and really do hope things work well for you.

Best of luck and many thanks.

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Hi there.first time going on forum.I had bc march 07 and in same year admitted 3 times hospital with cellulitis.I now have lymphoedema in my breast and was referred Marsden.Saw Prof Motimer.Everyone was so lovely and explained what treatment I should have and why.I’ve been on antibiotics now for 6 months and just finished 3 week MLD course(and now doing my own version!).I now feel so much better and although still there its definitely improved.The follow up care has also been good and its reassuring to know I can call them if I have any problems.So if you can be referred there do go.I’m glad I did not just for treatment but also for the advice they gave me.

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Hi both

Mizzy - what an interesting post. And what rotten luck to have developed full-blown lymphoedema so many years later.

I’ve never been treated at the Royal Marsden - I had an appointment there once when I was being assessed for the Hyberbaric Oxygen Therapy (HOT) trial for lymphoedema (did you ever hear about that?). I didn’t go on the trial in the end (long story, not relevant here), but I was very impressed by the lymphoedema nurse whom I saw. Very, very professional and knowledgeable indeed.

I understand that an appt with Prof Mortimer is about as good as it gets in the NHS with lymphoedema, as he is at the top of the (admittedly rather small) UK lymphoedema tree. From what I’ve heard, the Marsden is the best equipped NHS lymphoedema facility in the country and I would imagine that the its delivery of the traditional methods of treating lymphoedema, MLD and compression bangaing, are second to none.

Is your lymphoedema very bad? Only the worst cases seem to get to referrals to him and the last I knew, the waiting list for an appt was 18 months. I know it is possible to get a private appt with him; there is a lady who posts on here sometimes who has done this.

Many private lymphoedema therapists are very good and highly qualified. Is this an option for you?

If you are looking for ‘newer’ therapies, LLLT (Low Level Laser Therapy) has been used in Australia and some other countries to treat lymphoedema for about 20 years. I’ve been to Oz for this (I’ve got lymphoedema in both arms) and have subsequently bought a small laser of my own. If you are interested, leave me a pm (private message) on this thread and I can give you more details.

As for the cellulitis,it’s the pits on top of lymphoedema. I do know that the smaller the arm, the less likely it is to occur - common sense, really, I suppose, and something that you’d think would spur the NHS on to deal more enthusiastically with the root cause (the swelling) and not the symptom (the infection). But, as ever, they go for the short term solution, which is antibiotics. I’ve also heard that stress and being run down can also trigger cellulitis. Are tonics a good idea, I wonder?

Lynni is right; there’s something about the depressing permanence, obviousness and intractability of lymphoedema that really grinds you down. It affects everyday life so much and the maddening thing is that it often has a much greater effect than it should, due to sufferers often not receiving the help they need.

I think we all get depressed with lymphoedema and it’s hardly surprising. It’s great to post on here and know we’re not alone with it. Lynni, I hope your arm is improving again now and Mizzy, I wish you luck in your attempts to get better treatment.

Despite the widestread lack of interest in the condition, there are researchers out there trying to help us. I’d so love a breakthrough soon!

X to you both

S

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Hi again Mizzylizzy

Should have also mentioned that lymph node transplant surgery is being carried out in France and Germany.

X

S

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Hi Mizzylizzy,

I am the lady to whom Bahons refers - I have had a private appt with Prof Mortimer! I’m so sorry to hear about your problems with lymphoedema. I have also had recurrent cellulitis and a very prolonged recent episode which didn’t respond to the first or second lot of antibiotics. I am also on preventitive penicillin - though it’s not preventing much.

I am going to see Prof Mortimer again privately on 14th Feb - he does private clinics at Parkside Hospital in Wimbledon and you just need to ring the secretary and ask for an appointment if you want to do that. Then you would need a referral letter from your GP which should just be a formality to obtain. Also useful to have a letter from your lymphoedema therapist if you can get one.

Tell the secretary that the problem is lymphoedma and it’s your first time seeing Prof and she will give you an appropriate amount of time. Follow ups are 30 mins but can’t remember how long my first appt was.

I would love to chat more with you but have to get to work now - but I check this forum at least once or twice a week, if you want any more info re Prof. just ask.

Best wishes,

Rowena