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Lymph node removal + long term side effects

angrylady
  • 2 replies
  • 35 subscribers
  • 286 views

Hi. Could you please let me know regarding the long term side effects of full lymph node removal other than lymphoedema? For background last year I had a local recurrence of breast cancer. I had a left side mastectomy and implant reconstruction in the first operation. In the second operation I had a full left side lymph node removal and my nipple removed as they found cancer under it during the first operation. I did not approve chemo or hormone blocker tablets due to the low rate of effectiveness and side effects.

Since the lymph node removal I have had no issues with lymphoedema, however I am suffering extreme fatigue, pain / strange pulsing sensation in lower left leg and foot (not all the time) and I need to pass urine more. From a quick Google I understand that 'The lymphatic system is part of the immune system. It keeps body fluid levels in balance and defends the body against infections.'

Therefore I wondered if a full lymph node clearance could be related to what I am experiencing? Please advise. Thanks

  • Dear  

    Thank you for getting in touch with Macmillan Cancer Support and the Online Community. My name is Gillian and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line. I can see you are a member of our Breast cancer forum; I hope you are finding this support helpful.

    I am sorry to read since your second breast surgery and lymph node removal you are experiencing new and worsening symptoms including pain, fatigue, urinary symptoms, and discomfort in your legs.

     We normally say if you are experiencing a new symptom, a symptom that persists, gets worse or is changing then you must make your healthcare team aware.

    As we do not have access to any NHS medical notes on this platform it is difficult for us to diagnose. Due to some of the symptoms you have described we would always err on the side of caution and suggest a medical review today. Please mention the extreme pain, altered sensations in the legs, and your urinary symptoms. We are unable to tell you why you are experiencing these symptoms, but we would like you to look at the symptoms of Malignant Spinal Cord Compression (MSCC) and see if you have any of the symptoms such as numbness, pins and needles, leg weakness, difficulty walking, urinary symptoms such as difficulty passing urine or bowel problems such as a constipation or difficulty controlling your bowels.  MSCC is a rare condition, but one that is potentially serious, so we advise not delaying and seeking help as soon as possible to investigate this matter.

    We want you to prioritise contacting your GP or breast care team. If you are unable to contact them or don’t have their number, please contact NHS111. If any of your symptoms worsen or you feel seriously ill, then you need to dial 999 or go to A+E.

    Once you have been assessed please come back to us so we can discuss fatigue management and talk about late effects of lymph node removal.

    I hope this information is helpful.  You can always call one of our nurses directly if you want to talk over your concerns or require any further support.

     

    Best wishes 

    Gillian,

     

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

     

    Ref PW /GG

  • in reply to Gillian G - Macmillan

    Thank you for your help. I have been referred by my GP for further tests.

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