Breast still swollen 16 months after finishing radiotherapy

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1

Hi Everyone

I was just wondering if anyone has a similar problem to me.

I was diagnosed with a small Grade 2 lump in my left breast in September 2007 and had lumpectomy followed by 25 sessions of radiotherapy which were completed early December 2007. I’m now taking Tamoxifen for 5 years.

During my radiotherapy my breast swelled quite alarmingly. I was told that it would settle down but it never has. It is higher that my unaffected breast by about 2 inches and is a cup size bigger. In order to ‘balance’ things up I have to wear a prosthesis on my unaffected breast.

My breast was very painful most of the time but the pain is less frequent now although it is still very sore and tender. My first mammogram in January couldn’t be done properly because my breast was too painful and swollen. Because of this it didn’t show the site of the cancer. I told the onc that I was worried about this in February and she sent me for a ultra sound scan which showed some inflammation in the operation area, but no cancer, thank goodness.

I have asked repeatedly about this swelling when I’ve had appointments at the hospital. I’ve just been told that it’s a reaction to the radiotherapy and it will settle down and to take painkillers when necessary. According to all the info I’ve read; if your breast swells because of the radiotherapy it should return to normal within 2 to 3 weeks.

In the village where I live there were 3 of us diagosed at the same time, we all had similar treatment and the other two say that their breasts returned to normal very quickly.

To be honest the longer this situation goes on the more I’m worrying about it. I feel as if I’m being fobbed off at the hospital. My BCC has been brilliant all the way through but doesn’t seem to be able to give me an explanation which will put my mind at rest.

Has anyone had a similar problem please and, if so, what information were you given?

Thanks.

Jan xx

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Hi Jan

I can understand your concerns. I’m not as far down the line as you I finished my 30 rads in August last year. By Christmas my breast had swelled to double the size with fluid in the stretch marks, painful itchy and inflamed. I was looked at straight away in the breast unit and they said the same to me. Its a severe and delayed reaction to radiotherapy and should subside within 6 months. My first post dx mammogram was so painful I thought I was going to be sick. I’m now 8 months post rads and it does seem to be shrinking but its rock hard now and still very red. I still cant sleep on that side at night as I also have pain in the ribs. I see the consultant on the 17th so will bring it up once again.

I would keep on at your breast care team. You need complete reassurance that this is normal for you. Its very scary because it seems to be quite a rare side effect.

I hope yours subsides soon.

Regards Judy

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Hi judy

Thanks so much for your reply. It’s a relief to know that there’s someone with a similar problem. I’d begun to think I was the only one in the world!!!

Yes my breast was itchy and inflamed too. It still itches on occasions, not as much now but it’s still very ‘pink’. I also have pain in my ribs around the site of the op and get quite a lot of pain in my armpit.

I had a hospital appointment on 15th of April but that has been postponed now until 13th of May for some reason. I was sort of hanging on for the April appointment but I think I might have to phone my BCC, another month before I can ask about it again seems a long time.

I hope yours settles down as they have said. We have enough to contend with anyway without this. No one even mentioned that it could happen so I think that you’re right when you say that it is a pretty rare side effect. The number of replies to my post might give us an indication of how many ladies there are out there with a similar problem.

I do hope you’re soon feeling more comfortable.

Love to you

Jan xxx

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I am still a bit pink and I’m 2 years on from rads. It seems to come and go. I also find the top of my bra cup digs in on that side and I experience a slight itch from time to time; also occasional twinges in the bottom 2 ribs under my breast. My last mammo/follow up was December and the Consultant I saw said all these things might never go away.

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I agree with cherub - I am 2 and a half years on and my breast is bigger and much firmer than the other one and can be painful still at times. I have been told that it is a combination of oedema and rads damage and that it may never go. My last mammo had to be done twice because of the damaged tissue but was - thank god - clear.

Love Laine

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Hi cherub and Laine

Thank you for your replies. Just knowing there are people who are having the same problems makes me feel so much better. I feel much easier in my mind now. I was imagining all sorts of things.

I wish I could get rid of this partial prosthesis I have to wear with my good breast to fill my bra cup. I’m dreading the summer because it can get very sweaty. I really hate the thing but I know it could be worse.

I’ll see what transpires at my hospital appointment in May.

Love to you all I do hope that your problems improve. Please keep in touch. It looks as if there aren’t very many of us with this problem and it would be good to exchange info as different oncs have different ideas.

Love to you all, take care of yourselves

Jan xx

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Hi Jan - and Judy- whether or not there is any ‘medical’ cause for concern re the state of your post- treatment breasts, is absolutely immaterial. If you are unhappy about them, that is the most important issue. DO persist in complaining -it s just not good enough that you are being fobbed off in this way.

I have been referred to a Lympodoema clinic at my local hospice, at my request, even though I do not have Lymphodoema- but have had acute cellulitis and am at high risk. I have found that the assessment and treatment I have received there has been really thorough and excellent in every way. I’m afraid I don’t have too much faith in the BCN s - but if yours are any good they should be supporting you in getting some improvement in your conditions.

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Hi topsymo

I do ask about my breast everytime I go to the hospital but I feel as if I’m moaning. I know there are people worse off than me.

The surgeon did refer me to a plastic surgeon who told me that he couldn’t operate because I had lymphoedema in my breast so it wasn’t stable and if he operated on my good one to match it up I could end up with two odd breasts anyway.

I told my BCN what he had said and she said that it wasn’t lympho! My onc says it’s a reaction to the radiotherapy I just don’t know who to believe.

There is a Lymphoedema Clinic at the hospital I attend but there’s a 3 month waiting list and people are complaining about the treatment. We have an award winning Breast Cancer Clinic but it sounds as if the lympho side is a bit wanting.

I’m interested to know what sort of treatment you received at your lympho clinic. I wasn’t aware that you could attend such a clinic if you don’t have lympho.

Thanks for replying. All of these posts are easing my mind.

Take care of yourself

Jan xx

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dear jan.
at last i have found somebody who is experiencing exactly the same symptoms after having radiotherapy.
A year and a month have passed since my last 20 sessions of radiotherapy to my left breast…i had a fybroedeneama which is harmless but unfortuanatly when it was taken to the lab to be examined they found insitu carcinoma …the very beginings of cancer and very rare too to find cancer in a fybroedeneama…sorry but am not sure how to spell it…anyways after 5 months passed from the radiotherapy my breast started to hurt even more…the skin looks sort of blueishblackish and am in constant pain…the only days that i dont experience so much pain is when i get my period days…after my period finishes my breast starts to sort of swell and so tender sore and painful…i have been to my oncologist .he told me my breast is not swollen …i was really disappointed cos this pain is driving me nuts …depressing me and so irritable…last month i decided to go to my professor who has operated on my breast and he appeared to understand me and did agree that my breast is swollen and knows that i am in pain…the colour of my breast is different to the other one so this was evidence of my inflammation which he said could be due to damage or effects of radiotherapy…the only thing he suggested was to apply an antiflammatary gel twice a day for a month…i asked what if the pain remains and he said that the only other thing is to take steroids for a month which i definitely am against taking because they can bloat you up…at this point in time i think and will take anything to stop the pain…am due for a mammogram but am going to cancel my appointment because after applying voltaren gel my breast still hurts and swollen and blueish…am desperated for answers and for help…

Now that i have read your post am a bit relieved that others are going through what i am going through…and that it is not an invention of my mind…even my arm hurts and at times my ribs…please can anyone help me am desperate.

thanks for reading this;
cher

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hi cher

It’s good to hear from you. From the number of replies to my original post I think we have a problem which is not very common. Maybe that’s why it’s so difficult to get any answers.

I’m sorry that you are having such a bad time. I know what you mean when you say the pain is driving you nuts. I also get pain in my arm and sometimes it aches right down to my fingers!

My nipple is totally inverted and my breast seems to be more swollen some days than others but I’m post menopause so I can’t relate anything to the time of my periods.

Sometimes my armpit, back and top of my arm swells too. I don’t think by much but it feels huge. Like you I also have tender ribs, just in one particular spot. When I asked about this I was told it was due to the nerves which had been cut during surgery.

My left breast is noticably bigger than my right and I wear a partial prosthesis on my right one to fill up my bra cup. This is the only ‘treatment’ I’ve had. My left breast is higher on my chest than my right by about 2 inches. That’s a problem with wearing swimwear. I look an awful sight. I like to swim, which is supposed to be good for us so I keep my arms across my chest until I’m under the water! I’ve invested in swimwear with scaffolding inside for my hols.

Do you wear a prosthesis to balance you up?

I think if we could get some specific answers, instead of just damage caused by the radiotherapy, it would help. Things like, what’s damaged, why did it happen to us and not other people.

My armpit and the back of my upper arm have been numb since surgery but sometimes they itch!!! Drives me mad because scratching and rubbing does nothing to relieve it. What a strange thing to be numb but itch!!!

I seem to take painkillers like they’re going out of fashion. Sometimes it’s really difficult to stay cheerful.

My hospital appointment has been changed again to the 20th of May in the evening for some reason. I will be bringing the subject of my swollen painful breast up again hoping for some answers.

Please keep in touch. It’s a comfort to know that there’s comeone else having the same problem.

Look after yourself and take care.

Love and hugs

Jan xxx

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Hi Jan and everyone else with ghastly rads side effects

Hope you all had a good Easter and enjoyed the lovely weather today.
I have my 16 week check with consultant this coming Friday. Provided everything is ok I will try to ask as many questions as possible about these ghastly side effects we are still suffering and some of you for months longer than me.

Will post next weekend

Judy x

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Hi Judy

Yes had a good Easter thanks. I hope you did too.

All the best with your 16 week check up. Check ups are always a bit of a trauma.

Looking forward to hearing from you next weekend.

In the meantime

Take care

Jan xxx

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Hi all

Been reading these posts and do feel a bit better knowing that I am not the only one. Everyone else I know who has had rads in the past few years (about half a dozen) have been ok and I sometimes wonder if its because I have such huuuge breasts ( the rest of me isnt huge)although whether this is me clutching at straws I dont know.

I can go for a couple of weeks with very little in the way of symptoms and then back it comes - stabbing pains, tenderness etc but all I am told is nerve endings and rads damage.

Love Laine

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hi Laine

Yes I have the same thing. I just think that things are improving and then it’s back again.

I really don’t know what we can all do about this but it’s good to know that there are other people with the same thing.

Keep in touch

Love Jan xx

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Hi Jan and all rads ladies

I went to my consultant last Friday armed with all my questions. I too was told the bone pains are just ‘nerve ending damage from radiotherapy’ which may never completely go away. The swelling and hardness in the breast is allegedly ‘fluid build up’ from the rads! Apparently this can go on for a couple of years and I should try to go ‘bra less as often as possible to aid drainage.’ I was told that we all react differently to the treatment. Some ladies burn, some ladies get swelling and fluid.

Came away feeling quite disappointed but was told I could call at any time if my concerns increased. I too get stabbing pains from time to time which make me really anxious.

Wish someone would post saying it all went away at some point :slight_smile:

Best wishes to you all Judy x

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Hi Judy

Glad to see your post. Was starting to worry that your check up hadn’t gone very well.

Thanks for asking the questions and sharing the answers with us all.

I’ve been told 2 years too but I’ve been told to wear a bra because it lifts your breast and aids drainage??!!!

Are we to assume that this ‘fluid build up’ is lymphoedema? Do we need to ask for a referral to the lympho clinic?

All together there are 6 people who I know in the village where I live who have had radiotherapy and not one of them has had this problem.

I’m going to see the onc in May. I’ll ask some questions too.

If it’s any consolation my stabbing pains aren’t as frequent now as they were. Still get quite a bit of pain though and my arm is more painful.

We could do with someone who had rads 5 years ago and had this problem telling us what their experience is.

Love and best wishes to you. We have to keep plodding on.

Take care

Jan x

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Hi all and I thought I was the only one with problems How wrong could I be? Appointments changed for no reasons - me too! Excuses made or so it seems for anything going wrong no proper explanations me too! -just get fobbed off or so it feels! I am so pleased to hear you all speaking about the same things going wrong - not that I’m pleased but know what I mean I’m NOT the only one!!! I also have pain in my ribs and under my arm and my breast recon is very tender swollen and hard but maybe that’s because it has formed all scar tissue with radio I take tramadol paracetamol cuprofen for pain and have started amitriptlyne for nerve endings which definately seems to be helping my arm I am also on arimidex and the cuprofen helps the joint pain but think I must be rattling inside!!! I wasn’t keen to take the amitriptlyne as its an antidepressant but I only take 10mg at night and it does help!! I’m still under a physio and do my exercises everyday too! Never mind we’ll get there in the end!! Fingers crossed!!
So glad to be able to talk to everybody makes things a bit easier for all of us I think
Best wishes to all
Kaye

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I posted pics of my swollen left boob on the other site about a year after having radiotherapy when the difference was extremely noticeable. I was five years post radiotherapy on 19 April 2009 and they have evened up a lot

so if you wait long enough it will probably improve

Mole

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Hi Jan and lovely ladies

This bra thing is confusing. I was previously told I MUST wear a bra to support the swelling. Now I’m being told its trapping fluid in the swollen breast. I have lymphodema in the hand and upper arm already so I guess my BC nurse who helps me with that is my next step.

I too have compared radiated breasts with 2 other ladies who had rads the same time as me. Theirs are completely back to normal.

Thanks Mole for your encouraging post. Was starting to think this never improves :slight_smile:

Enjoy the sunshine ladies Love Judy

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Hi all

Yes it is good to know that there are others with the same problems and the same anxieties. We probably get more information from each other than we do from the hospital. I know what you mean about taking tablets. I really hate it but just have to take painkillers when it gets too much. I’ve just had a really bad night because of the pain in my breast.

At last Mole, someone who can give us the benefit of their long term experience. Thank you for your post. I sounds as if we just have to stick it out for the duration.

I can’t believe the conflicting information we’re being given, Judy. I know that different medical specialists have different ideas but surely it’s either better to wear a bra or not to wear a bra!! To be honest I couldn’t go without one at the moment anyway, I look very odd and deformed.

Love to you all

Jan x