I’m recovering from a nasty infection to my back, side and breast following mast and ld recon 3 months ago. I wa in hosputal for 12 days on iv antibiotics and had inevesytigative surgery via the back wound. All the bloods etc came back negative so they never worked out exactly what bug had got in, they just kept changing antibiotics until one worked. ts 3 weeks since then and all healed and doing well. My back wound has finally healed.
My confusion comes from my surgeon who said i have mild early lymphodema in my side/ back caused by the inection. He seemed to think this would resolve itself over the next few months. There is not really any visible swelling, but whenever i wear a bra it makes a very clear indent round the affected side, a groove that i can fit my finger in!
i also have major adhesion and constiction probs that my physio is clueless about.
I thought that if you had lymphodema you had i forver, has anyone else been told that theres will go away?
i also dont know whether to wear a bra. My pysio says no, surgeon says yes. i have tried alls sorts and been to specialist fitters, but all cause this groove which looks and feels really wrong, i have a small recon but no i cant go forever without a proper bra!
hi Lou,
I am so sorry to hear about all your problems post - op and hope that you are now well on the mend. Have you been referred to see a lymphodema nurse / clinic yet ? They will confirm whether or not it is lymphodema and will help improve things for you if it is (manual lymphatic drainage etc.) You are right - lymphodema is permanent and does not go away - insist on being referred asap- the earlier it is treated , the better it will be controlled.
I had a mx 2004 with rads, had absolutely no hint of lymphodema until I underwent prophalactic mx and bilateral recon using expanders in dec 2005. I developed an infection to the affected side , followed shortly afterwards by this feeling of discomfort and swelling (though I couldnt see andy swelling at the time) .I went to see my bc nurse who said all was ok, but I thought it was lymphodema and insisted on seeing lymphodema nurse. She confirmed trunk lymphodema, and gave me some manual lymphatic drainage with excellent relief. She told me that this had almost certainly been caused by infection and surgery from the recon and said she treats many pts who have developed this as a result of further surgery (recon) , especially if an infection develops . Were you informed of this possible risk when consulted about recon? I certainly wasn’t ! I have found a fab crop top bra in matalan for £4.00 which has an extra wide band underneath and this provides great relief with the light compression it provides. I still wear these with 2 lightweight breast prostheses- (my recon had to be decon!)
So, I would get referred to lymphodema nurse /clinic and find out first if this is lymphodema - the earlier this is dx and treated the better. Good luck- hope this helps!
There is an excellent lady on here with the usre name Bahrons2 (think thats it- might have spelt that wrong as my memory isn’t as sharp as it once was!) - she is fantastically knowlegable on this subject as she has this condition in both arms - hopefully she will read this thread and give you some advice!
Take care , LOL XXXXX
Brilliant post Happyshopper - and thanks for the compliment - I wish mostly I’d never heard of this beastly condition, but seem to have absorbed info’ because I’ve had it so long (and I’m always looking for anything new that will help us all).
I would echo everything you say and add that lymphoedema clinics can supply you with a special crop top for trunk/breast lymphoedema, lou. They are not particularly glamorous, producing a shape which one lady on here has described beautifully as a ‘monoboob’. That said, they seem to be pretty comfortable to and are a help even if you just wear them round the house. It’s well worth asking for one. I had a bit of breast/trunk lymphoedema at one time, which did settle down and I’ve occasionally worn the crop top - mostly recently as the Taxotere I’ve been having over the last few months has irritated my lymphoedema. Regular crop tops are also often more comfortable for me than ordinary bras, too. (£4 in Matalan? Brilliant.)
If you do wear ordinary bras, ones with wide straps are better. I think a lot of people also avoid underwires after having had breast surgery, too.
I think you should, as Happyshopper (well done you for persistence in getting seen by a lymphoedema nurse)suggests, insist on a referral to your lymphoedema nurse/clinic. Neither surgeons nor normal physios (sometimes bcns, too) are taught much about lymphoedema and they don’t have the skills to help you.
If you have the OK medically, swimming is really good for lymphoedema, but take it easy at first.
I too am confused about this whole lymphodema thing. I went to a physio before christmas and was told I had it. Fitted for sleeve etc etc. Since then, despite being in bed most of this week with severe cold/ear infection, swelling has gone right down? I was told being ill was likely to make it worse. Has anyone heard of this please