What is happening?

Macquarie University Hospital

Macquarie University Hospital (Photo credit: Wikipedia)

Last week I signed the papers that makes me officially part of the research into Lymphoedema at Macquarie University Hospital, Sydney, Australia. The Advanced Lymphoedema Assessment Clinic at Macquarie University has been granted approval by its ethics committee to conduct research into the causes and treatment of Lymphoedema. One of the main focuses will be to understand why some people develop Lymphoedema and others do not, also why in some cases the fluid turns to fat over time. The Chief investigator is Professor John Boyages of Macquarie University Cancer Institute.

I have been given three different “Participant Information Statements” to read, each requiring my signature to use my details and to gather information for this research. The first is to use information already gathered pre surgery. This includes pre surgery measurements, L-Dex reading, range of motion, photos of limb, MRI and Lymphoscintigram. These tests will then be repeated after surgery at 6, 12, 18 and 24 months. Blood will also be taken every 6 months to test for “markers” such as Protein in the blood to see if there are changes as treatment progresses. All this creates a record of results after surgery. My second signature was required to take part in these ongoing tests, follow-up and for results to be used for “Lymphoedema Medical Research”. The purpose of the study is to better understand the underlying biological causes of Lymphoedema, to improve and better understand of ways to treat Lymphoedema.

My third signature was required for the last part which is Genetic Testing. I was not sure about this, as I did not want to know the results, but I was able to request that I not be given these, but they can use them for their studies. To be part of this study blood will be taken and tested for its DNA structure. The genetic testing will be used to see if there is a genetic profile which makes one predisposed to Lymphoedema. They will compare various people, those with Primary Lymphoedema, Secondary and those with no Lymphoedema. In this way they hope to be able to assess people’s risk factors, if there proves to be a pattern in the Genetic tests. That way when nodes are removed someone who is at risk could be more aware and protect their limb before Lymphoedema starts.

The research will include those having Liposuction (the liposuction is not the same as that used for slimming as the lymphatics are avoided and thinner canulars used, it is a specialist treatment) and Lymph Node Transfers of both legs and arms. For the genetic testing people without Lymphoedema will also be used for comparison.

This is invaluable research which has been missing, even though these procedures have been done for some time overseas, there has not been good follow-up of results or research. The genetic testing will hopefully tell us who is at risk of Lymphoedema and therefore lead to a minimising of vulnerability. All research is welcome as it shines a light on the difficulties of living with Lymphoedma…. I will keep you posted on progress as my 6 month tests will be in September.  I hope that at the end of the study there will be some interesting and constructive conclusions but this will be in a few years time, to allow follow-up over a two-year period.

English: Macquarie University sign

English: Macquarie University sign (Photo credit: Wikipedia)

19 thoughts on “What is happening?

    • I know when I was diagnosed it would have been a great help to have the resources that are available now so, that is important to me to get them out there… Plus this is from a personal point of view not a medical one… Thank you for all your support …

    • You will have to contact them and ask Katrina who looks after the clinic and bookings..,you would still need a referral from your doctor but Katrina can let you know… The number for the Advance Lymphoedema clinic is available on line on the Macquarie Uni Hospital web site…

  1. WOW, how interesting and exciting. I’m really interested to see what the study shows for genetics. From what I understand women are more prone than men and I’ve always wondered why? Is it because of hormones? Either way, I’m really happy to hear about this research you’re in!

    • I think any research that may help understand LE is great… It maybe to late for us but could help and protect someone else who was at risk in the future.. Will be interesting to see what the genetic make up is and if there are differences.. There is so much we do not understand.. Helen xx

  2. Thank you Helen for participating in what appears to be such valuable and interesting research.
    I recently postponed my lymph node transfer to my right upper extremity as my oncologist advised me to wait until the surgeon I was seeing published his research. The surgeon said he was going to be published in the next month or so. So I will wait and see what his research shows. I imagine it is going to show positive results as he picks and chooses his patients fthose good results.
    My oncologist also wants to see that his research is peer-reviewed and that he is getting results of at least 50% before she would give her blessing to me on this procedure.
    It is vital that the surgeons that are performing this procedure begin writing about what they’re doing and publishing.
    I applaud you for all the effort that you put into taking good care of yourself and for participating in this research. And also applaud you for this blog that you write on a regular basis. It is so helpful and encouraging to those of us living with lymphedema.
    I look forward to posts. All the best with your continued recovery from your LNT.

    • Yes that has been many surgeries over the years especially those performed by Dr Corrine Becker for the past 20 years but undocumented this lack of research leaves a huge hole in where this is going…not only is it the surgery but the follow up care. I believe that in the next few years this will improve as we demand those results not just the positive videos of the success stories!! There are some surgeons who are very cautious with their work and are taking time to check results these are the ones I would connect with in the future… It is however good to know that there is something out there to help us and that time and money is being spent on investigating this… Helen

  3. I had genetic testing done back in 2002 for my breast cancer and just had it done again as there have been so many improvements to medical knowledge. I do want to know my results but I appreciate your decision as well. I was in a clinical trial/study as well for my BC. I think we have to help the future by participating in research! Good for you! ♥

    • Yes to be part of research paves the way for the future.. I was also part of research for treatment of my Uterine cancer.. This is the only way that medical science can progress…

  4. Hi Helen, I have just read the news with regard to your research programme in which you plan to participate. Bravo! What an admirable venture to take upon yourself. As mentioned there are many questions and mystery about who is susceptible to Lymphoedema and although Dr. Becker is an eminent surgeon she falls down with her lack of research and inconsistent aftercare. Over the years meeting other Lymphies we have often noticed that not many famous people develop this disease and it’s difficult to hide? Furthermore, I feel sure that the Primary People will be cheering as their suffering has been dismissed.
    Good luck and keep well,
    Yours Ginty

    • Thanks Ginty… It is so important to understand more and to get some good protocols for this surgery… The after care seems to be an area that is all over the place dependent on the Dr… Yet it is so important for a positive result over the time the nodes take to grow… Also in connecting with others there is a huge emotional toll wether having surgery or living with Lymphoedema in general… I hope that Dr Boyages addresses some of these issues too and not just the medical side… How are you ? … Take care Helen

  5. Hi Helen, I am still feeling optimistic and working daily on my leg. Sometimes I joke that I’m only looking after it for someone else and wish they would hurry up to reclaim this problem. Ha Ha.
    In a few weeks my husband and I will be cruising to the Black Sea and in the past vibration on board always badly affects my leg so it will be interesting to see if the new nodes make a difference. I will let you know upon my return at the end of November.
    Hope you are still making good progress with your legs and send my warmest best wishes.
    Yours, Ginty

    • Good to hear… Yes I think my leg has never had so much attention!!! I feel as if my lower leg has improved it does not seem to swell as it did… So here is hoping that gets better and better. Have a great trip and hope your leg behaves better than in the past!! It is always good to compare similar situations and see if it has improved..take care Helen xx

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