Lymph node removal + long term side effects

Dear angrylady 

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

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

Hi. I just wanted to add a note on this about the fatigue, pain and issues I was experiencing. At the end of July this year I was admitted to hospital as an emergency because the silicone breast implant I had following the mastectomy last year became infected and I had pus coming out from where my nipple was removed. I was very ill and on the verge of sepsis. (I had previously asked the consultant to plan in removal of the implant due to the pain it was causing me. It also looked red and hideous. I spent a year in agony with it.) Since the emergency operation to remove the implant I made the consultant send me copies of all the previous pathology reports which showed silicone granuloma in my lymph nodes (evidence the silicone implant had been leaking the whole time. The breast implant was made by Motiva.) 

I just wanted to post this here as since recovering from the operation (and having a terrible time with a seroma), the fatigue and pain has considerably reduced so I believe it was linked to the breast implant. The consultant who did the operation to remove it also mentioned that my body had been rejecting both the implant and the mesh they used to sew it in.

The symptoms I was experiencing did match those of Breast Implant Illness, and I wanted to share this experience here for reference. I have put a formal complaint in with the NHS trust concerned as I feel my concerns about the breast implant were ignored by the consultant and I was left in misery until it got badly infected. I am waiting for their final response.

I now have a flat mastectomy and feel much happier and more comfortable (although my breast was tiny anyway so I haven't had much to lose.)

Thanks.

Dear angrylady 

Thanks for getting back in touch through our Ask a Nurse Service. I’m Linda, one of the nurses from our support line. And thank you for sharing your experience with us and the online community. Please accept our apologies for not replying as quickly as we strive to.

It is good to read that your symptoms of pain and fatigue have improved, and we hope the pulsing sensation in your leg has also settled.

We also hope that when you do hear from the NHS trust that this is helpful and that you are able to find some resolution to what sounds like very difficult period in your life.

Sometimes it can be hard moving forward emotionally after such a difficult time. If this is something you are struggling with we can offer up to 4 free counselling sessions from our partnership with BUPA.

Cancer Support UK also offer support through their free coaching service too.

And if it you would like to speak with us we’d be happy to hear from you.

Take care and best wishes.

Linda 

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:LM/AP