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• Tazzy

  

  • 3 posts
  July 29, 2013 7:28:25 PM WATime

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  Can anyone give me advise please. I recently had a double mastectomy with both left and right sentinel node removal. I am now required to have blood tests taken (GTT). Is it advisable not to have it taken from my arms and how do they do it if I can't have it taken from my arm.

  47 years young mother of 2. Double mastectomy Right breast - intermediate gade DCIS ER POS (3+), PR POS (3+), CERB2 NEG Left breast - Infiltrating ductal carcinoma grade 2 ER Focal POS (2+), PR POS (3+), CERB2 NEG at 11 and 9 o'clock. Sentinel lymph node left and right enlarged with negative tumour. Margins >10mm.
• Glenys

  

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  • 162 posts
  July 29, 2013 11:27:46 PM WATime

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  Hi Tazzy.
  After having a sentinel lymph node biopsy there is a very small risk of developing lymphoedema (swelling of arm due to overload of lymph fluid) estimated at between 1-5% lifetime risk, due to the slightly altered pathway to lymph fluid drainage.
  This means the risk is low but not zero, hence advice generally is not to do anything that would increase the risk. Adding any increase in workload to the lymph drainage system of the arm may increase this risk. Having injections, taking blood, intravenous infusions, etc is possibly going to add to the workload in the arm, which is why advice is generally to avoid these things on affected side.
  
  This does become tricky when sentinel lymph node biopsies have been done on both sides. While the risk of developing problems after a blood test from the arm is considered very, very low, many lymphoedema specialists advise it is better to avoid even the slightest risk - therefore encourage people in this situation to have blood taken from the leg veins. Others argue the risk of one or two blood tests from the arm is so low it is not worth worrying about.
  
  Have you been given advice by your lymphoedema physiotherapist? (most breast centres have specialist lymphoedema physiotherapists who advise on exercises and risk of lymphoedema after surgery). If possible to seek their advice, this would be highly recommended. If not available, asking your treating specialist or Breast Care Nurse, or contacting the Cancer Council Lymphoedema Management Service http://www.cancerwa.asn.au/patients/support-and-services/lymphoedema-management/ may be helpful.
  
  Another useful factsheet on lymphoedema is available from the Breast Cancer Network Australia website - see http://www.bcna.org.au/sites/default/files/bcna-fact-sheet-lymphoedema.pdf
  
  Please let us know how you go with this Tazzy ...
  Love Glenys xxx

  The Click Breast Care Nurse 

• Glenys

  

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  • 162 posts
  September 18, 2013 1:13:58 PM WATime

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  Hi Tazzy, how did you go with having the blood tests? Did you get further advice?
  Very interested to hear the outcome for you ...
  xxx

  The Click Breast Care Nurse 

• Tazzy

  

  • 3 posts
  September 18, 2013 8:54:46 PM WATime

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  Hi Glenys I contacted various people and was advised against having blood taken from arms even though the risk is very low. I had bloods taken from my feet although it was a little more painfull and took a little longer than normal I got through it and will know now for next time.

  47 years young mother of 2. Double mastectomy Right breast - intermediate gade DCIS ER POS (3+), PR POS (3+), CERB2 NEG Left breast - Infiltrating ductal carcinoma grade 2 ER Focal POS (2+), PR POS (3+), CERB2 NEG at 11 and 9 o'clock. Sentinel lymph node left and right enlarged with negative tumour. Margins >10mm.
• Glenys

  

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  • 162 posts
  September 20, 2013 11:59:24 AM WATime

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  Thanks Tazzy - good to hear the outcome. That is in keeping with the advice I am familiar with in the areas I work as well.
  Does sound a bit more 'ouchy', but as you said, good you now know.
  xxx

  The Click Breast Care Nurse 

• Anne

  

  • 2 posts
  January 28, 2016 9:53:43 PM WATime

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  Hi Glenys
  Where can I get some advise on lymphoedema - I had a lumpectomy, radiation and chemo 7 years ago but my arm is getting a little worse...
  any ideas? Cheers Anne

  52 year old 5 years post diagnosis, lymphoedema right arm.

• Lucinda

  

  • 11 posts
  January 29, 2016 2:18:16 PM WATime

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  Hi Anne, unfortunately Glenys isnt working as part of the Click anymore but I can get another of our breast care nurses to answer your questions when they are back in the office next week. Thanks- Lucinda

   Support Services Coordinator at BCCWA 

   

• Nurse

  

  • 1 posts
  February 4, 2016 9:58:21 AM WATime

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  Hi Anne,
  Many thanks for your question - it does sound like you would benefit from a review of your arm and a management plan put in place.
  There are a few avenues that may be able to provide some assistance:
  - You could organize to see a lymphoedema practitioner privately who would be able to complete a full assessment and a suggested management plan or
  - You could see your GP who could organize a GP Management Plan. This essentially enables you to claim a Medicare rebate for a maximum of 5 allied health services per calendar year which can then continue on each subsequent year. Through this GP plan, you can be referred to a physiotherapist (it would need to be someone who is experienced in dealing with lymphoedema as not all physios are). You can request a referral to a physio that you already know or your GP can recommend one.
  There are also some really good articles on the Breast Cancer Network Australia website about lymphedema and its management.
  If you live locally, there is a Lymphoedema Cancer Support Group supported by Cancer Council WA which would also be a good forum for you to meet with other people who are going through a similar experience.
  If you would like further contact details for this support group or local lymphoedema practitioners, please contact the BCCWA office on: 08 9324 3703 and ask for Diane.
  I do hope that this has been of some assistance. Cheers Di
  

  Breast Cancer Nurse at Breast Cancer Care WA 
  Website: http://www.breastcancer.org.au/ Phone: (08) 9324 3703