Please help interpret results!

Hi I had a lymphoscintigraphy in June 2017 due to swelling in my ankles and legs - bilaterally. I am under St Georges Lymphedema Clinic as they suspected I have Primary Lymphedema (genetic defect). I wa told that my results would go to a multidisciplinary panel to interpret. They wrote to me on the 06/11/2017 to give me their findings. They state:

"We noted that there was extravasation of dye during the test making it slightly difficult to interpret" - should I ask them to re-do the test???

"However, we do feel there was an aberrant lymph node in the left shin region, raising the possibility of Lymphedema". - do I have Lymphedema or not? What is an aberrant lymph node - google says it's a melanoma should I be scared? Should I be having a biopsy???? Letter sent with no advice??

"The delayed images did not show any further rerouting" - what does this mean?

"But there was very poor uptake of dye within the lymphatic vessels within both legs. Inguinal lymph nodes were picking up the dye that was injected in her feet, but function was significantly reduced. This was confirmed on the quantification figures which demonstrated significantly impaired lymphatic drainage as only 1.4% of the dye in her right foot reached the inguinal lymph nodes in the right groin after 2 hours, and 2.6% of the dye injected in her left foot reached the left groin nodes after 2 hours (12% is considered normal)".

What I find confusing is then they say the following:

They discussed my case "in the context of her lymph scan and conclude that her lower limb Lymphedema is due to a birthmark weakness of the lymphatic system I.e primary Lymphedema".

They say "the pattern of her lymph scan does not fit with any of the known genotyped primary Lymphedemas, in other words we cannot offer her a blood test to confirm this is a primary Lymphedema due to one of our known genetic mutations."

However, they have offered for me to take part in their geonome study "to try and discover the underlying genetic cause for her problems".

Is it just me who is confused by this letter??? So in summary they can't confirm I have primary Lymphedema??

Any thoughts or ideas would be helpful!!

Please I am so confused! Will take weeks if not months to get an appointment to speak the the consultant. I am worried about cancer!!

I was bitten and had a severe reaction 2 years ago in Mexico and they said I don't have secondary Lymphedema but this all started around the same time??!!

I look forward to hearing any thoughts / advice!

Thanks in advance!

Wendy

19 Replies

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  • Sparkle I have sent you a PM.

  • Hi Sparkle

    I have primary LE, have had Lymphphosctingrapjy, and am also under St George’s. I’m so sorry to hear you’ve been put into a panic from the contents of the letter especially re possible melanoma. I’m sure Lynora has given you helpful advice in her PM. Simply put, the letter says the scan results are positive for Lymphoedema however not any of the known congenital forms of Lymphoedema/LE. As this disease only fairly recently started being studied/researched, new congenital gene faults are regularly being discovered - a few were discovered in 2016-17 alone. St. George’s has a large gene investigation and testing programme hence the letter discussing genetic testing etc.

    Now that you know you do have LE it’s important to be fitted for appropriate compression therapy, your local LE Clinic can do that. They can also teach you Simple Lymphatic Drainage/SLD, special skin care protocol to avoid infection, and lower limb LE exercises to promote lymphatic flow. Having regular MLD can also be immensely helpful however it’s not available on the NHS. qualified therapists by postcode search can be sourced at mlduk.org.uk.

    I’m very sorry it’s been such a traumatic time for you, sadly it’s often the way with this disease. There are lots of brilliant on line support groups in addition to this forum. And there are some in person support groups in parts of the UK, call the Lymphoedema Support Network/LSN based in London for details. Their website link below has lots of very useful LE information and leaflets on all aspects of living with LE that may assist you. Take good care. Cat xx

    lymphoedema.org

  • Thanks Cat, for taking the time to respond with such sensitivity and care. So helpful for you to share the links & to explain that the letter appears to say I do have Lymphedema. I so wish that I didn't! I have been fitted with stockings but haven't started wearing them yet in a mini protest as I am finding it hard to accept I have this condition! I was also offered the lesson to learn MLD but was too upset so the lady did it for me. I missed my opportunity to learn! It's helpful speaking to others with the same condition. Thanks Wendy x

  • Hi Wendy, Acceptance is a huge part of what we go through post-diagnosis, I think every Lymphie goes through resistance - we don't want it to be true and are desperate for a quick fix or even a slow fix as long as we can get out of having LE!! Your reaction is human and normal. LE affects us physically, emotionally, mentally and often socially, you are not alone in feeling as you do. Allow yourself to feel all the emotions you are and will feel while getting to grips with having LE. Many Lymphies talk of going through a grieving process as part of acceptance, I certainly did. I also fell into a deep depression due to the massive effect it's had on my lifestyle which had included extensive athletics for decades. I'm physically unable to run marathons as I had before. I was so emotionally immobilised by the depression, I sought professional support which helped immensely. My LE is Primary that morphed in my early 40's inially, but I thought was random intermittent swelling in my legs (put down to water retention...wrong). At age 46 the swelling returned and never left, it only worsened leading to proper diagnosis at age 47. I'm now 50 and the LE has spread, covering 3/4 of my body. (It turns out I'm missing most of the lymph vessels and lymph valves that a normal body has) . The sooner you start wearing your compression the better as compression therapy helps delay disease progression, but I understand your reluctance - it's rather hideous! You should find that compression controls your oedema symptoms and your ankle/leg will look and feel better. If you've been prescribed circular-knit garments, I suggest you inquire about getting flat-knit garments at your next clinic or St. George's appointment. Flat-knit garments (stiffer than circular knit) are made to measure and specifically designed for lower limb LE - they are generally superior for managing symptoms.

    You may find the following links/instructional videos for trunk and leg SLD helpful. It's important to drain the trunk/torso before draining legs. Sadly, the video series available from LSN does not include lower limb manual drainage hence my posting these videos with well explained proper SLD. Be patient with yourself, it's a lot to take in and learn about xx

  • CCT67 oh my gosh my heart felt heavy when I read your reply. I absolutely relate to what you had gone through as I am going through it now and it's started at a similar age. I have so many other symptoms which I am not sure are related but severe fatigue is one! I have wondered about depression as I am finding this news hard!! It's so refreshing to have so many kind people reaching out on this site and taking the time to share their experiences as I don't feel so alone. I feel very emotional reading your post as I feel proud of you despite not knowing you yet terrified at the prospect that mine could spread!! I have recently developed bags under my eyes which sounds ridiculous but I never had bags! I used to enjoy buying fancy shoes and now I don't want anyone to notice my feet. Vanity stuff I guess as people have much worse things to cope with. I feel guilty complaining when people have been afflicted with this as a result of cancer. I had never heard of Lymphedema before. I was convinced it was just the result of a long flight :(

    I have had fancy stockings sent in the post thanks to the lovely lady at St Georges and I have worn them briefly prior to going for a night out in the hope my ankles will last the night but they never do!!

    A genetic defect. A genetic mutation sounds so alien?? I have no clue right now if I will ever come to terms with this. I was told it's not life threatening with the expectation that I should be happy. It's just hard! It's life long & not curable which is happiness threatening :(

    I hate stockings! I love being bare foot! It's the first thing I do when I get home is kick of my shoes and connect with the earth.

    I am sure everyone on here as asked 'why me' it's such a bizarre indiscriminate unexpected nightmare!

    I am hoping that with everyday it will get a little easier. I couldn't bare it if it starts to spread!!

    You are so brave and I really do thank you for sharing your story and you kind and uplifting words.

    Would be good to know how you moved past the feelings I have now. Xx

  • Hi Wendy, I sent you a PM 😊

  • Hello Sparkle, I have read all the replies to your post which I think explain very well, or reassure you, hopefully. There is one question that no-one has commented on - the one about the aberrant lymph node! It just means they noted a lymph node that was in an unusual place- it does not mean you have a melanoma! Lymph nodes are a bit like collection and production points for the lymph in our lymphatic vessels and this one was just an extra one - imagine train lines with stations......

    So, no need to worry about that aberrant node...!

    I am also under St George's, I also have had a lymphocintigraph with unusual findings, agreed to genetic testing etc. I am lucky in that my lymphoedema is well managed with compression stockings and I wear high waist Proskins Slim leggings (at a smaller than my usual size) to help with thigh and lower abdo swelling. I have given up on skirts etc, but have come to terms with it all by accepting and developing strategies for dealing with special occasions.

    All the very best !

    V'ron

  • Hi V'ron,

    Thank you for your message and it's good to hear that aberrant has different meanings. At some stage I will do some research around where all the lymph nodes are located as I want to understand why I have one in the wrong place or one extra that's abnormal? I do wonder if I have been misdiagnosed given that they haven't seen my genetic mutation? Here is hoping!!

    I like the sound of the strategies you are using!

    All the best,

    Wendy

  • Hi Sparkle,

    So sorry to hear you are going through such a challenging time.

    Both my children have primary lymphoedema and are also under the care of ST George's. With both of my children they have an underlying genetic defect with their lymphatic system since birth but this was not realised until their lymphatic system was challenged. For my daughter it was a cat scratch when she was 18 months old but for my son it was the impact of a cricket ball when he was 13 years old. So it is likely that the bite and severe reaction you had was because your lymphatic system was already impaired but you were not aware of this.

    My daughter has had lymphoscintigraphy twice and it isn't a really detailed test to show exactly what is wrong. Like you they are also not aware of the faulty genes that caused it. My children, husband and I have all had blood taken at St George's for genetic testing and research to find the faulty gene. St George's are world leading in identifying genes that cause lymphoedema so I would definitely recommend going ahead with this.

    I'm no expert and therefore I'm not able to comment directly on your results but I would call up St George's and ask to speak to your consultant. They are really are lovely and I'm sure they would be happy to speak to you and answer all your questions.

    This is the beginning of your journey and I completely echo the brilliant advice given by CCT67 regarding contacting your local lymphoedema clinic (which may not be that local depending on where you live in the country). The challenge is finding one that takes on primary lymphoedema but the lymphoedema Support Network or even St George's can help with locating a suitable clinic or maybe if you say which area you are from then people on here could recommend somewhere.

    Take care.

    Xx

  • Hi SSC123,

    Thank you so much for your lovely message! It was really helpful for you to explain your children's experience as mine started at 42. I was adopted and felt very conflicted to hear this is a genetic defect!! I am still processing it but after reading your message I will take part in the study as they might be able to work out what is going on.

    Do you have any thoughts on what is meant by aberrant lymph node??

    Many thanks,

    Wendy x

  • Hi Sparkle,

    It is a lot to take in but it's amazing how quickly you will become an expert. Interestingly there is no known family members on either my husbands or my side with lymphoedema. It appears to be a poor genetic match between my husband and I. Thankfully we are compatible in all other areas!

    There is a great article by professor Mortimer in the autumn edition of lymphline all about the future plans of research at St George's into primary lymphoedema. You can get a copy from the lymphoedema support network.

    I've never heard ab the aberrant lymph node but I would call up St George's. I'm assuming that your consultant is Kristina Gordon? She is lovely and happy responds to any questions I have very promptly.

    Best Wishes

    X

  • Thanks SSC123 much appreciated xx

  • Quick reply, but my understanding is genetic doesn't necessarily mean it is inherited. Sometimes bits of people don't form properly because there is something wrong with their genes - but not necessarily inherited. I hesitate to use this example but I believe people with Downs Syndrome have an extra gene but it is not definately not hereditary.

  • Thanks Anne every bit of information is helpful at this stage. Much appreciated x

  • Hi Sparkle, I would like to reassure you a bit by saying that my lymphoedema has not spread. I was diagnosed at St Georges too, about 16 years ago. Mine is primary. Affecting my feet, upto my knees. My knees are ok though. It started when I was 15 but doctors had no idea what it was then. I'm 63 now. I wear my flat knit socks everyday. Open toe ones, I find are more comfortable. With socks on top. I wear trousers most of the time. When I wear dresses or skirts, I hide the socks by wearing boots. There have been times, like a wedding when I dress up with pretty shoes and, yes Ofcourse swelling comes back by the evening but at least feet were more or less ok for a few hours at the church service when I wanted to look nice. Later when dancing starts, nobody cares anyway. Most people take of their shoes and have a good time. It is a life style adjustment and I'd rather not have it too. But what can we do? I still go to St Georges every 6 months. This time I asked about MLD and they are going to book me a one off lesson. It's not too late. Any questions you can always ring the lymph nurses for advise or contact us here.

  • Thanks very much! It's reassuring that yours hasn't spread and you seem to have some strategies in place for various outfits which is good. I am probably more inclined to wear them in the winter months ;)

    I have booked an appointment to discuss my results but the earliest is February. Since joining this group I have also agreed to be part of the genome study so this group is really helpful.

    Thanks again! Wendy x

  • Hi,

    I haven't read all the answers to your posting but can you let me know who wrote it please ?

    I can't believe either Dr Gordon or Prof M would have deliberately sent you a letter that is so confusing.

    If I have a query about anything in my care plan I email their PA whom they share, and I always get a helpful, and prompt reply.

    If you are under the care of St George's it is they who should be telling you what your next step is now you've had your test.

    Was the letter you received a copy of for your GP or another Consultant ?

    Wendy

  • Hi Aprille,

    Thanks for your message. I don't think it would be fair for me to name who wrote the letter on a public website especially as the majority of people on this group are under St Georges. I agree the team are lovely & the PA is very helpful. Yes it is a confusing letter which I have re-read many times. I think because it's the outcome of the Multidisciplinary panel it contains the members differing views?? I have asked for an appointment to discuss with the consultant but the earliest appointment is in February so I am going to put it to the back of my mind until then. I have made contact to join the genome study. Thanks again for your message.

    Best wishes,

    Wendy

  • Sending you a pm 😀 ....

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