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Deanne's avatar
Deanne
Member
12 years ago

The need for proactive approach to lymphedema

Initially I was told that I was at a low risk of developing lymphedema. Other than being given the standard info about prevention and a list of physios who had some experience with treating women who have had surgery for breast cancer, this was pretty much the end of the discussion from my surgeon. It was not something that seemed to involve the oncologist who was my main provider of care in the months immediately after surgery (even though I battled with fluid under my arm and in the chest area after my mastectomy and partial auxillary clearance). It was not even discussed by the radiation oncologist even though I was having radiation to the chest, auxillary nodes and neck. They did have a poster about the lymphedema association in the waiting area with a contact number and info. So it was really left to me to take any action about my risk of Lymphedema. I saw a nurse who did some massage that helped with the fluid in the chest and underarm area but this was expensive at $60 a session and she was not into providing me with any skills to help myself. So I muddled along keeping in mind that I had supposedly a low risk. I exercised and lost weight and thought that this would be enough. Then I had a massage for a sore neck and noticed a steady build-up of fluid that did not reduce with exercise, self-massage or rest. Despite having lost 6kg my wedding ring was too tight to wear. Through my own research I found a Lymphedema Clinic at Icon Cancer Care in Chermside. Wow, what a fantastic facility. The programs involve an interdisciplinary team of medical (a specialist doctor) and nursing staff, physios and OTs. They have a Prevention and Early Intervention Program, an Intensive Treatment Program and a Maintenance Program. I was assessed by the specialist and put on a short Intensive Treatment Program. The thankfully small amount of fluid that had crept into my arm was reduced and I was educated about how to prevent any further problems. As I have hospital cover (but not extras) I was very happy to find out that the treatment was carried out in a day hospital (2 hours of treatment and education each day) and mostly covered by my health insurance. I really think that this type of treatment/education could be of benefit to anyone who has had lymph node surgery. Prevention and early intervention could save a lot of people from developing irreversible lymphedema. It is a shame that it is not just a standard to refer anyone at risk (even if their risk is supposedly low) to a clinic such as this one. We should not have to research and find these things out all by ourselves. Deanne xxx

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  • Deanne's avatar
    Deanne
    Member
    12 years ago
    It maybe that you will never get lymphedema but unfortunately even the doctors do not really understand enough to know who will and who will not get it. If you are considering getting a garment make sure that you are measured and fitted for it by someone who is very experienced (check they are registered with the Lymphedema Association). Also if you have never had a lymphatic massage by someone trained in it (again check they are registered) then it might be a good idea rather than trying to learn it from YouTube. Doing it the wrong way (like the massage I had for my sore neck) or with too much pressure can do more harm than good. There were differences between the massage I had by the physio/nurse operating by herself and the technique I was taught at the Clinic in Chermside. I know the staff at Chermside undertake regular training and also check each other. Everything they do is research based and up to date. This was very reassuring. I don't mean to scare people but just raise awareness so that people realize the risks and what they can do to minimize them. The specialist I saw is passionate about helping people avoid getting lymphedema in the first place as well as improving the quality of life for those with existing lymphedema. My GP was not aware that this facility existed. In fact knew less than I did about lymphedema. That should not be the case! Deanne xxx
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    I was given the leaflets etc and told to be careful but that was about it. My Drs didn't seem to inform me, or ever ask about it. As I didn't get lymphedema with my first diagnosis I think I just assumed I wouldn't get it after my second diagnosis. Looking back I was really a sitting duck. 7 nodes removed 1st diagnosis followed by chemo and radiation and them a further 6 nodes removed the second time around. I had developed a small infection under my fingernail of my affected arm. Still the penny didn't sink!! It wasn't until I got the aching arm etc that I finally realised what was happening....probably too late. Sure I had read the literature but with all the other stuff going on it wasn't a high priority. I really wish more emphasis had been placed on it and maybe I could have done more to prevent it. Who knows. I even think on this site lymphedema doesn't seem to be discussed that much, or maybe I haven't been seeing the posts. Thanks for bringing it to our attention. Paula
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    I was given the leaflets etc and told to be careful but that was about it. My Drs didn't seem to inform me, or ever ask about it. As I didn't get lymphedema with my first diagnosis I think I just assumed I wouldn't get it after my second diagnosis. Looking back I was really a sitting duck. 7 nodes removed 1st diagnosis followed by chemo and radiation and them a further 6 nodes removed the second time around. I had developed a small infection under my fingernail of my affected arm. Still the penny didn't sink!! It wasn't until I got the aching arm etc that I finally realised what was happening....probably too late. Sure I had read the literature but with all the other stuff going on it wasn't a high priority. I really wish more emphasis had been placed on it and maybe I could have done more to prevent it. Who knows. I even think on this site lymphedema doesn't seem to be discussed that much, or maybe I haven't been seeing the posts. Thanks for bringing it to our attention. Paula
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    I was given the leaflets etc and told to be careful but that was about it. My Drs didn't seem to inform me, or ever ask about it. As I didn't get lymphedema with my first diagnosis I think I just assumed I wouldn't get it after my second diagnosis. Looking back I was really a sitting duck. 7 nodes removed 1st diagnosis followed by chemo and radiation and them a further 6 nodes removed the second time around. I had developed a small infection under my fingernail of my affected arm. Still the penny didn't sink!! It wasn't until I got the aching arm etc that I finally realised what was happening....probably too late. Sure I had read the literature but with all the other stuff going on it wasn't a high priority. I really wish more emphasis had been placed on it and maybe I could have done more to prevent it. Who knows. I even think on this site lymphedema doesn't seem to be discussed that much, or maybe I haven't been seeing the posts. Thanks for bringing it to our attention. Paula
  • Michelle_R's avatar
    Michelle_R
    Member
    12 years ago

    I am clearly  not doing anything like enough, only the basic exercises and treadmill.  I was doing yoga for 6 months and thought I would continue it at home - yes, right!   It fell by the wayside.  Shall be looking at pilates and weight-bearing exercise to add to the program.  There are some very good self massage videos on youtube for the lymph system - will have to make it a winter project!  Will also check out the compression garments you mention. Thanks for the info - I so agree we need the information.  Michelle xx

  • Deanne's avatar
    Deanne
    Member
    12 years ago
    I saw a physio in hospital and was given info on arm exercises to take home. Is this what you mean? These were to do with getting full movement back in the arm and helping to prevent cording. I still do these when I do my stretching each day. There is so much more that you can do specifically to help prevent lymphedema though. Yoga (especially deep breathing) is very helpful. Also any moderate level general exercise such as walking is good to help maintain a healthy weight. Exercising in water such as water aerobics is excellent because the pressure of the water is great for the lymph system as you move your muscles. And weight training or Pilates that works on strengthening muscles of the core and upper body can really help as the lymph system relies on movement of muscle to act as the 'pump'. Combine exercise with daily lymphatic self-massage and you greatly reduce your chance of developing lymphedema. Lymphatic massage is very relaxing before bed and is something that we all could benefit from even if you are not at risk. The other important thing they recommend is to be fitted for a compression garment that you can wear as a preventative measure during high risk activities such as flying or long distance driving. You are also taught how to bandage your arm if you notice any swelling. Bandaging will help to move the fluid, a compression sleeve only helps to prevent or maintain. This gives you peace of mind that you can do something to help prevent permanent lymphedema if you have some minor swelling develop like I did just before Easter. Moving the fluid before it hardens is very important. Anyone who has had any lymph node surgery especially if they also had radiation to the axillary nodes is at risk of lymphedema even years after treatment. A preventative program giving knowledge in how to minimize the risk should be something made available at least to all of us who have radiation to the axilla. Lymphedema has a big impact on your quality of life and we deserve to be given all the information and skills we need to avoid this preventable problem. Deanne xxx
  • Michelle_R's avatar
    Michelle_R
    Member
    12 years ago

    So glad you found the Chermside Clinic and that you are doing so well.

    My Oncologists didn't bring up lymphodema either, but my Breast Surgeon had a physiotherapist attached to his practice who specialised in post-surgical exercise, making a first visit in hospital and arranging for a follow-up visit later on.  I started exercises 2 days after surgery and still do them - they are on a pink & white pamphlet in most of the oncology centres.  Very simple but very effective at preventing future problems.

    It might be worth checking if your surgeon has the pamphlets in his waiting room - it would certainly help his future patients.  How long do your exercises take?  Mine are only 5-10 minutes.  At first I did them every hour, then 3 x a day, now once.  Just a part of life, now.  Michelle xx

  • Hikerbabe's avatar
    Hikerbabe
    Member
    12 years ago

    Thanks Deanne for yor comments. Having just had a mastectomy and sentinal node biopsy, I now have to go back for more surgery to have a full axillary clearance. Lymphodema is one of  my biggest concerns as I have read some really horrible stories about the impacts of it. I will now have to see what we have in Newcastle in regards to Prevention and Early Intervention Programs. Therese:)