Lymphodoema surgery - MLVA ( surgery Jan 2020) in right arm following breast cancer chem, surgery and radiotherapy

FormerMember
FormerMember
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Dear All,

I was diagnosed and had treatment for right breast cancer in 2914 through 2015 and developed lymphodoema in the right arm in 2016. I never felt that the risked nor prevention were properly explained to me, and once I developed the condition the was little (effective) help. Following a couple of years of  the.condition getting worse and several epsisodes of cellulitis I decided to explore surgical options. These had to be self-funded as despite life-threatening infections and supporting letters by my consultants I was told there was no funding to help me. I had a consultation at the Oxford Lymphodoema Practice but was disappointed by the predicted outcomes. Nevertheless, I felt this was my only chance so booked a date for the surgery. Unfortunately I developed another bout of cellulitis that within four hours had me hospitalised with borderline septecemia. I was in hospital for a week and at home recuperating for a further fortnight. This time gave me chance to review my situation and decisions this far. By chance, a chat with an old friend (Italian) who advised me to look at going to Italy to seek hhelp (she knew nothing of my specific condition nor the treatment options available in Italy, so I was a little sceptical) rather coincidentally coincided with me spotting that the surgeons who were going to perform LVA on me (but had predicted less than attractive success outcomes) had trained with an experienced micro surgeon in Italy. The rest, as they say, is fate. My friend acted as translator/communicator and after a 36 hour trip for a consultation and discussion I made the decision to have my surgery in Italy. It was a tough call - expensive, lonely, scary, time consuming and unpredictable. But I'm in week 3 of my 4 out here, surgery went well, and I'm getting excellent support as well as looking at a much less swollen and softer limb. I will update as I hopefully progress and will answer individual questions if anyone is considering the same. So far,  the whole enterprise Is looking to cost around twenty thousand pounds, but this isn't much more than I was expecting to pay in the UK and I feel I'm getting much more for this cost. Please let me know if you have specific questions and I will doe my best to answer them as directly, honestly and thoroughly as I can. And please keep your fingers crossed for me that these early good signs develop into really life changing results. 

  • Very curious what did the surgery involve. 

  • FormerMember
    FormerMember in reply to Pih58

    A three hour operation under general anaesthetic to make a deep incision in my upper right arm, that performed LVA - a bypassing of my failed lymphatic vessels by joining good vessels to my veins thus short cutting the blockage and allowing the normal flow of drainage to occur. I was in hospital for five nights ( the night before and four after) and not allowed to move around much. My arm was heavily bandaged. After discharge I have resumed my outpatient care here in Italy of intensive compression therapy (as I was having before my surgery) and should be going home in another week. By this time, I have been told that I will be able to resume my normal life in full. Two days ago I transitioned from bandaging to a regular compression garment and it looks to my hopeful eyes that my limb is continuing to decrease in size. 

  • So how many lymph nodes were removed or damaged during your cancer treatment if you don't mind me asking.

  • FormerMember
    FormerMember in reply to Pih58

    All - a full clearance 

  • Well I find this very interesting which I am sure others will also. I wish you well and please come back and let us all know how you are. You talk about your health insurance may I ask what country do you live in. I myself live in the UK and of course I have free NHS.

  • FormerMember
    FormerMember in reply to Pih58

    I live in the UK and so am an NHS patient but also get BUPA through my employment. Neither would provide surgery, nor assist with costs. The treatment is not NICE approved because there is insufficient data to support that it works sufficiently to justify the costs. It is very expensive so people can’t afford it, so there are few undertaking this surgery so it is no surprise there is minimal data! Very frustrating! This is why I came to Italy, because the private surgeon has had such success that the Italian NHS pay for patients to be treated by him! I had to self-find. Unfortunately NICE won’t accept data from Italy/other EU countries - I suspect this is to avoid recognising that this surgery does help and should be available to all on the NHS!  

  • FormerMember
    FormerMember in reply to FormerMember

    Just read this back and seen all my exclamation marks - you can sense my frustration with this journey. This treatment is necessary, possibly life-saving for me, yet having it depended on my ability to pay for it myself. I am aware that many can’t and I don’t see how NICE can be so unfair. 

  • I understand how you must feel about what a struggle this has been for you. We have people who come on to this site from all over the world and we find it interesting and it enlighten our knowledge. As far as NICE well it was a ten year trial with women all over the world taking part. Surgery was all I had no other treatment was needed but I had more lymph notes removed 6+..and like your arms were affected so were my legs. Anyway that is in the past thanks to my GP who was well keyed up on lymph and the trial. Also MacMillan helped me with tips and hints. I wish you well and hope you will keep us all updated on your progress. Take care