I was dx Jan 2003 with idc, WLE and total axillary removal. tumour was non palpable. FEC chemo and rads, now on Arimidex.
For the past year or so the right breast, where the tumour was below the aureola, is swollen, puffy, aureola is white as if no blood is getting there, and grossly enlarged with white lumps on it. Nipple is crusty and going south (can’t even see it when I look down, although my left nipple is upright and perky.
I only get a 2 yrly mammo at my hospital, haven’t seen the Onc since finishing chemo and rads, except for a private HER2 test 2 yrs ago. I get an annual review with the bc surgeon. I last saw him Feb 27th 2007 and pointed out the changes in my breast, which have gotten worse, and he said I had lymphodoema. I know you can get lymphodoema in the arms, but never heard of it in the breast. Is it because the lymphatic fluid cannot now go through the lymph nodes in the breast, which are non-existant? I am due for my 5 yrly review end of Feb 2008, with the 2 yrly mammo, but am very concerned, since my original tumour was non palpable - only found at a 3 yrly mammo when I was 58 yrs.
I have been in touch with the Medhelp bc specialist at the Cleveland Clinic in Ohio, via the internet and he has suggested that my symptoms could be a recurrence of the idc tumour and I need to see my surgeon, Onc (fat chance!) or GP (a waste of time) at the earliest and get a mammo, ultrasound and tumour markers done. I have written 2 days ago to my bc surgeon asking for an urgent appt in clinic or a private appt at the Nuffield, copying my Onc and gastro (as I am waiting for the results of a recent MRI on a stricture in my small intestine abnd possible resection). I don’t feel I can cope with the bowel surgery and a recurrence, considering what I went through with FEC chemo and having to discontinue my weekly methotrexate chemo for Crohn’s. Absolute total faecal incontinence and I lost 28 lbs.
Has anyone any ideas/thoughts/insight into breast lymphoedema and its’ symptoms? With the festive holidays, my letter to my bc surgeon will not get there until tomorrow - my lovely bc nurse retired early December and I have not been allocated another one yet, so don’t know whom to contact.
I was diagnosed in Dec 06 and had WLE, chemo and rads and am now on Herceptin and Aromasin.
I’ve got lymphoedema of the breast. Mine started after chemo and before rads but the rads made it worse. My breast is swollen and bigger than my healthy breast. The areola is paler than the other one but I think that was caused by rads. When the lymphoedema started, I noticed that the breast was warmer than the other one and slightly pink. I believe that the main cause is because the lymph can’t get down the arm as usual so gets stuck in the breast.
I’ve had a course of MLD (manual lymphatic drainage) which helped while I was having it, but it’s got worse again recently.
I’m sorry to hear that youv’e got crohns as well. What a worry. I think you need to have a mammogram and ultrasound as soon as possible to see whether or not this is a recurrence of IDC. If they are sure that you have lymphoedema then you should ask for referral to a lymphoedema specialist.
I do hope you get an appointment soon. Let us know what happens.
With best wishes
Anthi
Hi Anthi -
as my lovely friend in Florida would say, “you are an angel sitting on my shoulder”. I am almost 5 yrs from dx, and could have accepted the changes in my breast due to surgery, chemo and rads, but not 3 yrs out.
Thank you sincerely for making the effort to reply…having dealt with Crohn’s problems for some 37 yrs, thought I had the NHS sorted by now… but my hospital in Plymouth does not do annual mammos, even after bc, and I do worry about having a non palpable tumour. I also don’t understand why my Oncologist discharged me after chemo and rads. Perhaps as my gastro says “you have empirical problems Liz” and he can’t be bothered. I just feel so isolated. I am hopeful that my letter to the bc surgeon, who is very kind and compassionate, will bring some action next week.
Your symptoms are similar to mine, and I am probably worrying unnecessarily,but I think I know my own body by now, and the electric type shooting pains down my right arm, as I had before being dx, stupid of me not to get it seen to, makes me rather worried.
I would get checked out. I don’t know about lymphodema but a crusty nipple could be a sign of Pagets disease of the breast. Thats like a non invasive cancer that sits under the nipple ( I think) and its not detected by mammogram or at least mine wasn’t.
Please do get yoruself checked out. Just because your oncologist has discharged you doesn’t mean you can’t insist on an appointment with a specialist now you have these new problems.
Horrid time of year to have something to check out…everything shut…no one answering the telephone.
Hi Liz
Just wanted to say that I had a WLE in 2003 and last Christmas I had two red patches develop on the affected breast with swelling and orange peel skin. After a couple of panic appointments and Mammo/Scan they decided it was lymphoedema ( I had decided that it was Inflammatory Breast Cancer and that I was in big trouble! As I do! lol! ) I was told that it couldn’t be treated and that no one knew how to do drainage for the breast. If it had been my arm I would’ve been OK. Anyway I got used to it and it doesn’t give me much trouble. In fact the swelling has evened things up and I don’t look so lob sided now! (unexpected bonus!)
But, another Christmas, another problem. I have just found a new lump in the other breast but I know from experience that it isn’t necessarily anything bad. Still, it gets you down really. Hope this has helped a bit. Best wishes Hun!