Lymphodoema in the breast

Lymphodoema in the breast

Lymphodoema in the breast I was dx 4 yrs ago with 2 cm idc, lymph nodes involved, had WLE, total axillary removal, FEC and rx.

Last 6 months had enlarged breast, hot to the touch, aureloe grossly enlarged and white lumpy spots on the lower half of the breast where the tumour was. Skin has lumpy appearance like orange skin.

Rang my bc nurse, told me to see GP urgently - did that evening, she said something was wrong but didn’t know what it was - faxed an urgent appt with bc surgeon. Saw a young female surgeon who ordered a mammo and ultrasound, then she did a biopsy.

Went back a week later to see my orginal bc surgeon who said biopsy was clear for cancer and it was lymph fluid building up in the breast - oh, and he saw some cysts in the armpit where he did the axillary removal and just loved popping them! Every time I see him, he does this!! Guess he has a thing about popping cysts.

I asked him if it was inflammatory breast cancer and said: “no” - so I must believe him. I am still concerned about this problem as I have heard of lyhmphodoema in the arms but not in the breast. Has anyone else had this?

He just told me to use moisturising cream and massage the fluid back up to the armpit. Been doing that, but the breast is still very enlarged and hot.

Any advice, anyone?

For Lizziecee Can relate to this, as I, too, have the same problem. Have just had my first post-op mammo and ultrasound which were normal, so am reassured it is ONLY breast lymphoedema.

Ask to be referred to the lymphoedema clinic, if your breast surgeon has not already advised this. There you will receive manual lymphatic drainage (MLD) over a number of weeks. This is a special type of massage - very relaxing - which I have to follow up on a daily basis at home (to the best of my ability). Whilst reducing the lymphoedema, unfortunately it does not disappear; I think once you’ve been diagnosed with this condition, it can be controlled, but not cured.

My boob is far less puffy now, though the hardened tissue is much more evident underneath. I was told that breast lymphoedema is caused by a combination of surgery and radiotherapy, so there is nothing we could have done to have stopped it developing.

Hope this helps.

Mcgle

PS At night, I wear a piece of ridged foam in a crop top, the purpose of which is to break up the lymphoedema whilst I am asleep.

Liz we’ve both got lymph accumulating in breast. Current solution is lymphoedema clinic for lessons in how to shift L… Start Mon see how it goes.
There is also an esoteric technique with sticking plaster- may know more after Mon.
Now for the big moan- the onc saw all this- red breast below pink line, orange peel skin Nov 6 said it was lymph build up. No advice or referral - unimportant.
The boob got bigger- the red line rose to above the nipple- would soon be one sided busting out.
So phoned BC nurse, who referred me to lympho clinic.
'Nother onc 'nother moan - failure to diagnose leg lympho- regarded it as irrelevant personal reaction- now have cellulitis- hope it gets cleared up in early stages.
What is it with these oncs? All the regulars at my hosp have let me down big time.
Liz how’s your husband’s back - prob diagnosed? help given? Hope some progress has been made- best wishes and phone your bc nurse, dilly

For Dilly Think we share the same hospital and lymphoedema clinic. If so, you will be pleased with the level of service you receive from the lympho nurse.

I had the kinesio taping, and it did work to a degree. A bu**er to keep on though!

Hope you have success with your treatment, Dilly.

Mcgle

Mcgle I’ve been told how good Sue the lymph is- nice to share something good!
Surgeons, Surgical Ward, Plastic surgeons, Burns Ward , ENT and Breast Care Nurses -all splendid- but the oncs-words fail- still the same hosp?dilly

Same hospital, Dilly, but my experience has been somewhat different to yours - have been very pleased with all aspects of my care.

Sue is lovely, and is clearly an expert in MLD. My boob is an awful lot better, and this is largely down to her.

Good luck with your treatment.

Mcgle

breast lymphoedema Hi there,
just seen your posting. I too have lymphoedema of the breast which started a year ago after mastectomy/back flap recon/axilla clearance and radiotherapy. Mine has gone into the arm and hand too now but I don’t think there is any reason why yours should and a lymphoedema specilaist wo9uld give you advice about how to reduce the risk of this. I have just been unlucky.
I see you were diagnosed with cellulitis…I did wonder when you said it was hot as this lymphoedema does not cause heat. I do hope it is improving and you are taking it easy to let your body fight the infection.
You need to go to a specialist clinic and be taught about skin care, excercise and simple lymphatic drainage ( a simple but specialist massage you can do yourself). If you are lucky they will hopefully provide you with a pressure bratop and teach you how to do the kinesio-taping as these help to keep the swelling down. A crop top with foam insert is OK but the pressure garments are better. Only prob is they are not bras so don’t hold a prosthesis well so I were mine at night or when in the house. You should not wear pressure garments or massage when you have cellulitis though.
Don’t know why the doc told you to massage to your armpit as you don’t have any lymph nodes there so won’t get rid of fliud that way…better to ask for specialsit advice as more likely to show you how to drain it towards your groin nodes or other side underarm. Oh and don’t massage too hard till you are shown how to as you can make the swelling worse as I did before I got to a specialsit. My surgeon told me to massage to get rid of the fluid and so I did what I was told only to wonder why it was worse.
I have found the Lymphoedema Support Network very helpful and they have their own site.
Hope you are feelilng better and have already accessed good support locally, but if not, good luck.
Buff

Mcgle Sue the Lymph turned out as good as you and everyone said!
Liz she showed me how to massage boob lymph-I was not getting it right. Plus she recommended a sports bra - ordered it- wider straps don’t compress glands round shoulders- no seams to catch and rub and no overflow when bust swells.
Hope this sorts it.
Cellulitis must be mild because was given support kneehighs for leg lympho- advice about how long for antibiotics- leaflet and appt before Xmas.
Buff thanks for the LSG will check it. Have asked about L specialists - Sue the L nurse is the entire Lympho staff for a 50 mile radius- not surprising she’s busy.
Thank everyone for their helpful input - feel much happier to have got wretched probs tackled, dilly

And should have said Liz get on the phone to your breast care nurse for referral to Lympho Clinic- know its a bit daunting because LCs always seem to be under Palliative Care- but needs must, and hope you get more comfortable/less worried soon dilly,.

lymphodoema in breast Hi ladies, many thanks for all your uplifting replies - which is where my right boob needs to go!

The information you have all given is invaluable and I will ring my bc nurse tomorrow - although, if she knew enough about lymphodoema in the breast, I do wonder why she didn’t suggest it. I am sure they must have an MLD nurse at Derriford in Plymouth, as it is a centre for breast care excellence.

Dilly - thanks for asking about Ted - we went to see our very compassionate and caring GP this afternoon. He is as perplexed as we are. He spent at least a half hour with us - well, there was no prescription to write! - looked up all the letters from spinal neurosurgeon, cardiologist, orthopaedic consultant et al, and said “What do you want to do, as I haven’t a clue?”. Yikes - patient heal thyself!! After 35 yrs of dealing with an orphan disease like Crohn’s I am certainly not backwards in coming forward these days - which is unusual for me, as all my school and work reports say I “have a certain nervousness which belies her abilities”. I guess now I am a pensioner I am learning to assert myself.

We have decided to have a referral on the NHS (have already spent £1,000 on MRI tests and 2 consults with a spinal neurosurgeon) back to the original vascular surgeon who did Ted’s stent surgery on his leg some 7 yrs ago. This mysterious Hungarian vascular surgeon whom Ted saw in March, and said he had no problem with circulation, has now replied from Hungary to say “Mr. Clark may have residual peripheral vascular problems”. Jeez, it does make you wonder about the NHS.

If this doesn’t show the problem, we will go privately to see a neurologist as I think it could be connected with some problems Ted had with the vertebrae in his neck through some 20 yrs of sailing with his feet under kicking straps. Other than that, neither of us have a clue where to go. Ted has asked me to research peripheral vascular disease on the net tonight, so let’s hope I can find a clue.

Brilliant to hear your found the MLD clinic supportive- I will get onto it tomorrow.
Love,
Liz.

Liz hope the L clinic will help you and also hope that they’ll find out what treatment your husband needs soon- misery hanging around hoping for answers. Best wishes for better things for you both, dilly