I’m at a high risk of Lymphedema after having 23 nodes removed but I am unsure if I should or shouldn’t be living like I have it? If that makes sense? Like being super careful with cuts/burns/bites etc. No heavy lifting with that arm.
I’ve tried to ask my breast cancer nurse but not heard back yet. Just looking for advice on how I should be getting on with things if that makes sense!
Yes my lovely be very aware of cuts/grazes/thorns/bites etc on that arm/hand as if any of these get infected we will struggle to fight them as effectively without lymph. I’ve just made sure I’ve got anti-septic & dressings at the ready & have just become more thorough at applying to any broken skin. But we don’t need to be scared just prepared. I was told not to lift heavy on that side ever again but I know some people are a bit less cautious on this & suffer no ill effects. No heavy bags on that shoulder though. I was very dedicated to my stretches & movement post-op but turns out I have developed lymphadema in my chest & underarm area nonetheless which is very annoying & haven’t worked out a good bra to wear yet without getting swelling x
Ah thank you. Yes from what I’ve read there’s no rhyme or reason to who gets it regardless of how many nodes are removed.
I was also told the swelling could take months to go down after such a big op so I’ve been left feeling unsure at how I would know the signs of early on set. My arm is still numb and feels tight but that’s been like that since surgery.
I’ve phoned up a few different areas and keep having to chase for anyone to actually get back to me.
I’ve been very cautious anyway so will keep it up x
Hi Nicole and Whataloadof,
I have lymphoedema and had NO nodes removed. I did have proton radiation therapy which, like all radiation, apparently puts you at risk. I wasn’t made aware of the risk and paid no attention until I recently saw in a mirror the huge difference between the size and position of my breasts. The heavier breast led to a change in my posture…I’m bent over which I never was. I’m 77 years old and noticed this change in our door camera at home…it was shocking to me. I’m angry that I was given no post op exercises to do, until I saw the physical therapist last week…my surgery (lumpectomy) was more than a year ago. So, I suggest being proactive…either do some provider-approved exercises or if you can, have lymphoedema physical therapy. I understand it can happen any time…even years later. And, of course bras are challenging! I wish you both the best!
I had similar concerns about developing lymphoedema and my breast care nurse team was very dismissive (“ring us back if it doesn’t improve over the next few weeks but all we can do is refer you for Physiotherapy and the waiting list is very long”; they didn’t even get me into clinic to have a look)
So, I went to a Lymphoedema Clinical Specialist Physiotherapist at a private hospital and I don’t have lymphoedema thankfully (just “cording” which she described as inflammation of the lymphatic vessels left behind after clearance of the nodes). I do get tightness and heaviness in the axilla and breast especially at the end of the day or after exercise so she told me the best way to deal with that and to try to prevent lymphoedema in future is as follows and in priority order:
The way they monitor you to tell if you are developing lymphoedema/ if your lymphoedema is worsening is to take several measurements at specific points from your hand upwards to your shoulder and also around your chest.
I was very reassured by her.
I hope that’s helpful to you and if you have any other questions please feel free to ask.
Best wishes xx
Hi,
Thank you for your reply! The tips you provided are helpful. I’ve never heard of a chest band. I do like the idea of preventing worsening and discomfort.
Thanks again!
Best,
Gail