Itchy breast

hi everyone. I’m new to the forum and have found reading the posts very helpful. Thank you to everyone.
I have lymphoedema in my breast following radiotherapy after a lumpectomy in Septmeber 2007.
I also feel as if I’m on a conveyor belt no-one is really interested in my problem.
It wasn’t until I was referred to a plastic surgeon to see what he could do to increase the size and raise up my good breast to match my affected breast, that I was told that I had lymphoedema in my breast and in fact none of the health professionals I see regularly has ever told me that. My bc nurse told me that it was ‘more like oedema’.
I do wear a prosthesis on my good breast to bring it up to the level and size of the other one.
I’ve just about given up trying to get anything done about it and have decided that I’d be better just accepting the situation and getting on with things.
In everything I’ve read I haven’t seen anything about the affected breast being itchy. Mine drives me crazy, itching like mad, on occasions. I can’t seem to find anything which solves the problem except giving it a good scratch which gives a bit of relief.
Has anyone had this and if so to they have any solutions to the problem. I’m assuming it’s to do with the lymphoedema, but maybe not.

Hi Jan

Just noticed you’ve had no replies. I’m unable to help I’m afraid but hopefully someone will come along with some advice. I think alot of us are still coming to terms with new site.

Take care xxx

Hi Jan

I think itchiness can be a symptom as well.

Can’t lay my hands on my little lymphoedema bible at the moment, but will try and find out more.

Can’t imagine why your bcn thought it was ‘more like oedema’(???) and I think that no other health ‘professional’ (bar the plastic surgeon) mentioning it all is pretty ‘unprofessional’, but not that rare. Lymphoedema often doesn’t register on their radar at all, sadly.

Have you tried to get a referral to your lymphoedema clinic where they can measure you for a compression top that ought to make you a bit more comfortable?

Take care



Hi thanks to both of you for your responses. It really does help to know that there are people out there who understand and have a similar problem.
I think that the lymphoedema clinic where I live is not billiant. From what information I can get it seems that they concentrate on extreme cases such as treating limbs which can’t be used properly because of lympho or people who have it in their head and neck (awful). I can understand that these people are worse than me and I wouldn’t want to take resources away from them. I just wish someone would say this is what you’ve got!!!
With everything else the support from my Breast Cancer Clinic has been superb, I really can’t fault it.
I’m going for a checkup on Wednesday and I’ve asked to see the Clinical Oncologist himself. I shall ask him outright and see what he says.
What is your ‘little lymphoedema bible’ and is it available to anyone?

Best wishes

Jan X

Hi Jan

The name of my ‘bible’ is ‘Recognition, Treatment and Management of a Lymphoedema Arm’ (and I can’t find it anywhere at the moment! Serves me right for being so untidy).

The headline author is Professor Neil Piller of the Lymphoedema Assessment Unit, Flinders Surgical Oncology, Flinders Medical Centre in Adelaide, Australia (it has no ISBN number, but it has their own ref number of 0-9579226-0-X). I ended up with a copy of this little booklet because I went to Oz for low level laser treatment for my lymphoedema.

Neil Piller is one of the foremost research scientists in the world on lymphoedema and a very interesting man.

Back to the booklet - I suggest googling some of the info I’ve given you to see if you can track it down.

You could also try googling ‘Lymphoedema Association of Australia’ for general info, too. Their web site is very good, with lots of detailed information.

Don’t feel guilty about using up the clinic’s resources. Everyone with lymphoedema needs help, even if it turns out to be only advice and a compression top. And one of the ways to ultimately bring about an improvement in lymphoedema services is make sure that those in charge of it are aware of how much it is needed - by all sorts of people, not just the most severe cases; mild cases can end up as severe cases if they are not managed properly, too.

Good luck with your oncologist - hope you get a definite answer - let us know how you get on.



Thanks for the info. I’ll definitely see what I can find on google.
Never ever been on a forum before but I’m so glad I registered on this one. I feel better already. I’m not on my own any more!!

I’ll certainly let you know how I get on on Wednesday.



Hi. Well I’ve been for my check up and the clinical oncologist says that my breast will settle down. It’s not lympho it’s a bad reaction to the radiotherapy.
I had an ultra sound scan because my first follow up mammogram 3 weeks ago didn’t show the site where the cancer had been because my breast was too painful to compress.
The scan today showed some inflammation at the site of my op.
I have to see the oncology team again ub 6 months.
Really don’t know where that leaves me. Can anyone help please.


Hi Jan

That wasn’t very helpful for you, was it?

If you can’t get into your NHS lymphoedema clinic, how about trying to see a private lymphoedema therapist, if you can afford it? is the place to find a properly qualified practitioner, who may be able to tell you whether you indeed have a reaction to the radiotherapy, or lymphoedema, or both.

Other than that, go for the best and most comfortable bras you can get hold of ('spect you’ve done that already!) and maybe ask your GP for some prescription strength anti-inflammatories?

Sorry, not much in the way of ideas, but keep us posted, won’t you?

Take care,



Thanks Bahons2
No it wasn’t very satisfactory with regard to my swollen breast but I did get an OK that my cancer wasn’t still there. I had my first post-op mammogram 4 weeks ago and because my breast is too painful to compress the mammo didn’t show the site of the operation. It did show that the rest of my breast was OK. At least yesterday I had a scan which showed the operation site is clear. I’m very pleased with that.

I did get a leaflet from Lympho Support UK and I do have health insurance which would cover the cost of some treatment but only if it was administered by someone who is a qualified consultant in that field. I think I might telephone the ones in my area and ask if they are consultants.

I have some really good bras thank goodness. Before Christmas I won £1,000 of underwear in a competition. They are really nice supportive bras (I’ve had the make before) made for bigger boobs so I’ve been really lucky with that. I’d like to get rid of my prosthesis on my good boob tho. That would be a bonus.

I’ll ask the doc for some strong pain killers. Don’t need them all the time but I could do with some in the middle of the night particularly sometimes.

Thanks for your help


hello Jan
Iv been reading your thread and was very interested as i seem to be starting on the same road as you with no answers.
I had my op on the 9th dec 2008, took what i thought was an infection (not near the scar) underneath (I have large breasts also) the inflamation and swelling now covers the whole breast and my rads have been posponed three times. Iv tried to find out what the problem is eg. lymphodema, cellullitis or somthing else i havnt heard about. Have had 7 lots of antibiotics to no avail. G P sent me to oncoligist, he sent me back to surgeon and she sent me back to oncoligist whos now on holiday, im getting disy. Has anybody else out there had a simmilar problem? its now getting itchy (i hope that means its getting better) but i doubt it. thats why your thread caught my eye.

Hi Jan

Well, good news that there is no cancer there, and that’s the main thing. And lucky you, winning £1000 of free underwear, too!

As far as I know there are, or were, only two specialist lymphoedema consultants in the UK. (It’s not a condition which sparks great interest within the medical profession). The guy at the Royal Marsden is Prof Peter Mortimer and the last I heard the NHS waiting list to see him was about 18 months, although he does see private patients as well. ‘Rowena’ who posts on here has seen him privately and may be able to tell you more.

As you know, treatment for lymphoedema is usually given via an NHS facility or a private, qualified therapist, so anything that he prescribed would not be carried out by him. But it could be that if you can get to see him, that might be enough for your insurance company, I suppose.

Re; painkillers. My GP stumped up a prescription for 100 mg slow release diclofenac last week and I’ve paired it up with 1000 mg of shop-bought paracetamol. I take them both about 11am and at the moment I can manage the rest of the day without anything. I’m quite a fan of diclofenac…!


Sounds like you’re being given the run around, too. And seven lots of anti-biotics is a lot! It must be miserable having your rads postponed like this. Someone should take reponsibility for this, so I hope your onc comes up trumps when he/she gets back from holiday and that you get some constructive action soon.

X both


Hello all,
Not sure where to pst this query - no itchy breast - but do have lympho. in left arm, after lumpectomy in Sept. .07 and removal of 6 lymph nodes, with radiotherapy to the whole area.

Reading some of the comments made I feeel lucky that I have had very good support from my hosptial, and lympho. nurse. However as far as “extra” info. is concerned about lympho. I agree you do seem to be left in a kind of no-mans land. Once diagnosed and treatment began I feel sort of left to get on with it!!
Anyway back to my query -over the last few weeks or so, like most people have had this “flu” type virus, and I have noticed that my arm seemed to swell just a little, does any know if this could be connected to having a virus or is it just coincidence (or am I just being pranoid!!) I know immune systems get effected but is this just while recovering or is it permament?

Anyone else feel the same?

Keep smiling

Have just found my little lymphoedema bible, Jan. (It was in Heap No 4 - shame on me).

We talked about itching, etc and the bible says that the following are all major signs of lymphoedema

‘feelings of heaviness, pain, tension, bursting pains, pins and needles, numbness, a sensation of heat, redness, warmth, prickling, itchiness and the like.’

Did you have any luck tracking down your own copy?

Hi Nanna

I’m not a medical person, but I imagine that the extra strain on your immune system could well have affected your arm. Hopefully as you become more fully recovered, your arm will improve. If not, I would suggest you ask for some extra treatment from your lymphoedema nurse to get you back on track.

I agree that it’s difficult to gen up on lymphoedema. My clinic never used to have much information and I don’t think there was much opportunity for the staff themselves to get acquainted with new products, research, etc, either.

Hi Bahons 2
Thanks for your advise, I think I might make an appoitment to see lympho nurse as you suggested. Will let you know what they say, it may be helpful to others.


Hi Bahons2, Sorry not to have posted anything I haven’t been on the net since last week.
No I didn’t manage to track down a copy of the ‘bible’ but my Breast Care Nurse telephoned me and we had a good talk.
For the last week my breast hasn’t been anywhere near as painful as in the past so I think it might be settling down as I’ve been told. I’m keeping my fingers crossed. The Nurse told me that what I have is not lympho because I don’t have it in my arm as well, is that right? She said that you can get lympho in the chest wall after mastectomy but not in the breast alone? Anyway to cut a long story short she said that if my breast was no different when I go back for my next appointment in April she will refer me to the Lympho Specialist. I’m happy with that especially as the fear that the cancer was still there has now been removed.
The nurse said that the best lympho clinic from where I live is in Derby (my home town) at the new City General Hospital (of course it would be I was born just down the road)


Hi Anniemac
My breast was OK until I started radiotherapy. Obviously there was swelling from the op but by the time I had my first checkup after 2 weeks of radiotherapy my breast was quite swollen. I was a little perturbed then, but I was assured that there would be no more swelling. Wrong. My breast continued to swell and the settings on the machine had to be adjusted twice. 6 weeks after the radiotherapy I visited my GP and asked how long it took for things to settle down. He said I had an infection and gave me anti-biotics but my breast remained swollen and obviously still is.
As you can see my story is a little different to yours but you being passed from one specialist to another is not good. You need some answers for your peace of mind. I have a friend who had a mastectomy a month after I had my op and she is a great one for ‘playing the cancer card’ when she needs some attention. She says what’s the point of having cancer if you don’t make it work for you!!! Maybe you need to adopt a similar policy and say that you need some answers.

Best wishes

Hi Jan

Don’t worry about not posting for a while - no clock punching on here, thank goodness:)

Good to hear that you are in less pain, that must be making you feel a lot better.

I’m afraid I’m going to disagree big time with your bcn. It is quite possible to have lymphoedema of the breast (and back and trunk) without having it in the arm (and vice versa). I think her information is, to put it kindly, out-of-date.

It may not lymphoedema that you have, and it may settle (as it seems to be doing a bit now?), but I think you still need to have it confirmed or otherwise by a lymphoedema specialist, not a bcn - it’s not her area of expertise. It’s good that she said she would refer you in April if there was no improvement, but did she say how long the waiting list was at the lymphoedema clinic? It can be months in some areas.

I know I’m not allowed to post links to other websites, so will pm you a link to ‘step up speak out’, a brilliant lymphoedema website with lots of good info’ on breast lymphoedema.

Anyhow, here’s hoping that you continue to feel more comfortable and won’t need an appointment at all. That would be good!

Take care



Hi Bahons2, I’m so glad I joined this forum I’ve found it so helpful.
Yes the bcn said that the waiting list is about 3 months for the lympho specialist which isn’t very good but is probably why they play it down if it isn’t a severe case. I have some of the symptoms from your ‘bible’ but not all, but I suppose that’s normal. The pain is still improved and I do feel better and brighter.
I’ve had really good support from my bcn and everyone at the hospital. I have absolutely no complaints at all. I just wish I could get to the bottom of this but maybe it is just a reaction. It’s just going on a bit. Getting on for 15 months since I finished

Best wishes


Hi Jan

Nice to hear from you again!

Three months is indeed quite a wait, but I imagine that if your discomfort worsened they could bump you up the list?

And 15 months is a long time to have this problem…but if your pain levels are going down, I reckon that must be a good sign and perhaps an indication that things are settling at last. Brilliant for your morale, too

Did you get the pm I sent you?



Just wanted to say, I’m really glad this thread has started and I will be watching its progress. I’d radiotherapy that finished in October 06 (feels longer ago now) but I get itching like crazy sometimes. I do have lympo and my arm swells and gets painful, but the itching is only in my breast and I get severe pins and needles sometimes. I’ve asked at check-ups but was just told it’s a radiotherapy side affect and theres nothing they can do. Thankfully the pain is rare but I’m very intrigued to see if you find out anything or any tips to help it.

Congrats on 15 months clear! I am 15 months too from my secondary.

Moira P

Hi Moira.

I’m so pleased that someone has the same itchiness that I have. You describe mine exactly. I’ve been told to moisturise to stop the itchiness I do but it doesn’t stop it.

The pain in my breast is much easier now but my arm has started aching like mad, right down to my fingers with pain in my armpit.
My upper arm has ached from time to time but this is almost everyday now especially at night.

I’m a bit perturbed that you are still having the side effects of the radiotherapy so long afterwards. The doc told me at my last check up that it lasted months rather than years.

Why do we get so much conflicting information? What are we supposed to believe? Can anyone clarify?