Supporting women whose lives have been touched by breast cancer

Truncal Lymphoedema

[A long Story]

By P

This is apparently quite rare; it turned out that no one at the hospital had ever seen it, i.e the specialist Lymphoedema Physiotherapist, BC nurses, BC surgeon, and Dermatologist, neither had any of our Gp’s. As a result it took 11 months to diagnose and had taken over the whole upper right quadrant before I got to see the Lymphoedema physiotherapist who diagnosed it and said it was a “textbook case” with regard to the history and marks on my back. Treatment (MLD) began two weeks after that.

At the moment, I have large red blotches on the right side of my abdomen, below my mastectomy scar, which stop at the centre line and waistline. My lower back, below breast level, has horizontal red stripes rather like whiplash marks, which again stop at the centre back and the waistline. The physio says that the skin over these red marks has a typical “orange peel” look. Apparently there are also pockets of lymph fluid in my arm, under my arm and on other areas of my back, which are not red.

I kept a record of the development of this Lymphoedema as I have been passed around various medics in circles and it seems the easiest way. If it is of any help I have copied it below.

JUNE 2008
24 Mastectomy. 3 Lymph glands removed. No further treatment necessary other than Tamoxifen
WE 7th Seroma drained. Sore patch above scar developed
14th Seroma drained. Fluid sent for testing because sore patch spreading. Clear
17th Patch still spreading. Saw GP; Cellulitis Cofluampicil 500 mg 4x daily
23rd Patch still spreading and very sore now. Repeat prescription
30th Much improved, though still sensitive to light touch. Now a patch on side under arm – more brownish red and not sore. GP said it looked like shingles but didn’t seem to be. Cofluampicil finished
12th BC clinic, skin still v. sensitive around scar and felt as though there was a seroma again. Not drained due to skin condition. Now another patch L shaped seeming to join up with drain site. BC nurses also queried shingles. Photographed
2nd BC clinic re seroma, Red patches seen again, have now spread to right side of back
8th Saw GP re patches. Hydrocortisone cream.
30th Saw GP re marks which have spread. Flucloxicillin 500 gm 4x daily.
Blood tests for bacterial infection.
1st BC clinic ( found another lump - cyst). BC surgeonalso checked on patches, agreed with treatment.
6th GP. No improvement. No Infection Repeat prescription + penicillin. Thyroxine upped to 150mg
16th GP. Referred me to dermatologist. Given Fusilidin cream to use
Went to BC clinic re feeling of fullness and swelling around surgery site
Given a shaped prosthesis as original one was pressing on site
10th Saw Dermatology consultant. Asked for blood tests and biopsy.
17th Biopsy
21st Dermatology again. No real indications of cause of patches from biopsies. Appt made to see team of Dermatologists. Patches still spreading.
21st Saw Dermatology team. Patches now spread to side, and definite swelling around breast area and under arm causing discomfort when wearing a bra for any length of time. (Had to buy a larger size)

Dermatologist team said it could be a reaction to one of my blood pressure tablets or it might be an unusual form of Lymphoedema. Referred me back to BC surgeon
29th Saw GP. Stopped tablets as requested by above.
20th Follow up with GP. Patches now spread to abdomen so able to re start tablets. Bra or cropped top now really dig in and cause discomfort after a few hours
25th Hospital, saw BC surgeon. He was concerned about fullness of mast site. Took Fine needle biopsy and referred for ultra sound. Ignored redness etc
4th Ultra sound scan. Found seroma but nothing else. To be re-checked and drained.
24th Ultra sound; seroma drained. Fluid sent to pathology – clear. Ultra sound also showed nothing.
7th Spoke to bc nurse who confirmed that ultra sound gave no cause for concern.

I registered my concern that my other problem was not being investigated and solved.

She referred me to Lymphoedema physiotherapist and suggested that I also rang GP.

GP referred me back to dermatology

20th Saw Lymphoedema Physiotherapist. Truncal Lymphoedema confirmed. Involves whole of upper right quarter. MLD to start 15th June
8th Saw dermatologist again. Confirmed Truncal Lymphoedema which she’d never seen before
15th Start of a week of MLD. Lympho Physio said she’d never seen it before but it had been covered on her training course
19th Last treatment. Physio seems to think it’s working – I’m not sure. Once per week maintenance for “a while and to massage it myself as best as I can twice per day. Trying patch test of Kinesio tape and if OK she will tape it next time and try that.

The Lympho. Physio said that the fact that I’d had several seromas and cellulitis of the breast tissue made me a typical candidate for going on to develop truncal Lymphoedema