Forum Discussion

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

48 Replies

  • Chenners's avatar
    Chenners
    Member
    11 years ago
    My story is so similar to others in that many doctors are not being proactive in helping patients with the onset of lymphoedema. When I was first spoken to by my surgeon, he informed me that I would develop lymphoedema following my mastectomy and subsequent treatment. The only time that I was checked for signs was by the registrar radio oncologist who referred me to the physiotherapy department at the hospital six weeks post treatment. This was in spite of the fact that I had raised the issue of experiencing swelling under my arm and some tightness in my upper arm months earlier. Now I am informed that I should have been applying self massage procedures straight after surgery. The only information given me was a Cancer Council booklet when I asked the breast care nurse about it prior to radiotherspy treatment. I am so disappointed that this important aspect of treatment is so haphazardly being addressed. I would like to call for a more proactive approach for routine monitoring and provision of better education on lymphoedema as part of routine checks.
  • Carol's avatar
    Carol
    Member
    11 years ago
    It seems treatment varies greatly - presumably degree of impairment also. Many of us "get away" with off the shelf garments for exercise or in my case for each chemo and Herceptin treatment swelling . Some of us then get swelling and heaviness which requires further treatment. Problem is with diagnosis etc. For me treatment was month long program of several hours massage, exercise and either laser or swimming on alternate days. This was when i took my daily shower pnce bandaging removed. Custom garments came at end of this month which were worn 24/7 for year or more. Some continue with this. Once arm bandaged swelling moved down into hand so,then that was also bandaged. Hence arm garment and gauntlet worn for a year or more. Now on,y wear arm garment for exercise or travel. I was lucky, although i waited what i thought was a long time 3 or 4 months from initial heaviness, others come once the lymphoedema is thick and forget the word anyway less likely to respond to treatment. For me water exercises the easiest, weight bearing ones good too although difficulty can be not overdoing for those of us starting from a point of negligible exercise.
  • Carol's avatar
    Carol
    Member
    11 years ago
    It seems treatment varies greatly - presumably degree of impairment also. Many of us "get away" with off the shelf garments for exercise or in my case for each chemo and Herceptin treatment swelling . Some of us then get swelling and heaviness which requires further treatment. Problem is with diagnosis etc. For me treatment was month long program of several hours massage, exercise and either laser or swimming on alternate days. This was when i took my daily shower pnce bandaging removed. Custom garments came at end of this month which were worn 24/7 for year or more. Some continue with this. Once arm bandaged swelling moved down into hand so,then that was also bandaged. Hence arm garment and gauntlet worn for a year or more. Now on,y wear arm garment for exercise or travel. I was lucky, although i waited what i thought was a long time 3 or 4 months from initial heaviness, others come once the lymphoedema is thick and forget the word anyway less likely to respond to treatment. For me water exercises the easiest, weight bearing ones good too although difficulty can be not overdoing for those of us starting from a point of negligible exercise.
  • Carol's avatar
    Carol
    Member
    11 years ago
    It seems treatment varies greatly - presumably degree of impairment also. Many of us "get away" with off the shelf garments for exercise or in my case for each chemo and Herceptin treatment swelling . Some of us then get swelling and heaviness which requires further treatment. Problem is with diagnosis etc. For me treatment was month long program of several hours massage, exercise and either laser or swimming on alternate days. This was when i took my daily shower pnce bandaging removed. Custom garments came at end of this month which were worn 24/7 for year or more. Some continue with this. Once arm bandaged swelling moved down into hand so,then that was also bandaged. Hence arm garment and gauntlet worn for a year or more. Now on,y wear arm garment for exercise or travel. I was lucky, although i waited what i thought was a long time 3 or 4 months from initial heaviness, others come once the lymphoedema is thick and forget the word anyway less likely to respond to treatment. For me water exercises the easiest, weight bearing ones good too although difficulty can be not overdoing for those of us starting from a point of negligible exercise.
  • Carol's avatar
    Carol
    Member
    11 years ago
    It seems treatment varies greatly - presumably degree of impairment also. Many of us "get away" with off the shelf garments for exercise or in my case for each chemo and Herceptin treatment swelling . Some of us then get swelling and heaviness which requires further treatment. Problem is with diagnosis etc. For me treatment was month long program of several hours massage, exercise and either laser or swimming on alternate days. This was when i took my daily shower pnce bandaging removed. Custom garments came at end of this month which were worn 24/7 for year or more. Some continue with this. Once arm bandaged swelling moved down into hand so,then that was also bandaged. Hence arm garment and gauntlet worn for a year or more. Now on,y wear arm garment for exercise or travel. I was lucky, although i waited what i thought was a long time 3 or 4 months from initial heaviness, others come once the lymphoedema is thick and forget the word anyway less likely to respond to treatment. For me water exercises the easiest, weight bearing ones good too although difficulty can be not overdoing for those of us starting from a point of negligible exercise.
  • Deanne's avatar
    Deanne
    Member
    11 years ago
    It depends on your situation. If you have established lymphoedema the intensive treatment programs run for several weeks with treatment 3 times a week. Treatment takes about an hour or so each time. They achieve amazing results for many people. I just did a short program as it was more about prevention of future problems as I had only a little build up of fluid. I attended 5 days (for an hour each time) over 2 weeks and now just go every 3 months to check that everything is still under control. :)
  • Kerry59's avatar
    Kerry59
    Member
    11 years ago
    Hi Deanne Thank you for your help, over how many days did you you need to attend? I work full time in the City and given how tenuous our jobs are at the moment i worry about taking too much time as i am the chief breadwinner in the family
  • Deanne's avatar
    Deanne
    Member
    11 years ago
    Yes. You need a referral to see Dr Ian Bunce. He is a Clinical Haematologist with a specialist interest in Lymphoedema. He will assess you and then put you into a suitable program with the nurses/OT's/physios. Hope it goes well for you. Deanne xxx
  • Kerry59's avatar
    Kerry59
    Member
    11 years ago
    Hi can you tell me if you need a referral for the Chermside Clinic please.