5 years since surgery and still in pain

Hello ladies.

I had mastectomy and immediate reconstruction in August 2016. After nearly 5 years I still experience daily discomfort. Some days are worse than others (especially when it is cold) but I always have a tender or pulling sensation under my arm where the muscle was brought round and the implant area just constantly aches!!! Over the last few months it has also started to feel softer to touch too. I did wonder if it had a leak at one point!!!

Is anyone else in the same boat? I’ve mentioned it the surgical team at my last appointment but they were very dismissive of my concerns. 

Would love to hear your experiences x

Hi Helen,

Sorry to hear you still have pain and felt the surgical team were dismissive at your last appointment. That’s frustrating… I wonder if it may have been related to your medical team being so under the cosh, plus the rest, through covid, rather than intentional? Did you make it clear you had felt this discomfort consistently for a long time? I had a different type of surgery so cannot help re experience, however a couple of thoughts:

It sounds like a conversation with the nurse at BCN might be helpful (tel number top right hand side). While they won’t be able to diagnose/comment re what’s causing your discomfort they would be able to give an indication as to the different types of things it could be, plus how un/usual it is for women to experience this after your type of treatments. That might help inform your approach to: 

  • Speak to your GP, to see what they think, if it’s muscular they may be able to help? 
  • Have a follow up conversation with your breast care nurse and the onc (once you have a few responses here, plus the above). 

A few other q’s and pieces of info which might be worth conveying if/when you call BCN, contact your breast care nurse and surgical or onc team: 

  • Have you tried doing exercises again, to see if that helps loosen things and reduce pain?
  • Does the pain go if you take paracetamol or ibuprofen? Might be helpful to convey that to the nurse too.
  • And does the tightness limit or restrict your movement?

You might get more responses if you also posted in the moving forward section, since it tends to be the newbies (and a few longer term members replying to them) in the surgery section, than moving forward section - which is just that? Plus perhaps clarify if you had lymph nodes removed under your arm (or more extensively) since that might help other members when replying to you?

I’m sure you’ll get responses from others who have experienced this soon, and hope you get to the bottom of the cause of pain and change re touch, so that you can either feel reassured, do something about the pain and/or get appropriate follow up investigation if needed. 

XXX Seabreeze (6 years on)