Lymphodema of the breast
Lymphodema of the breast Hello - I hope someone out there can help me.
I had a lumpectomy and 6 lymph nodes removed in May 06 followed by radiotherapy. I am in as much pain now as I was then! I was lucky in some ways as I only had grade 1 cancer but I have had lots of post operative problems which are painful and making me depressed.
I have lymphodema and/or haemotoma in the breast. Also I keep getting infections and need antibiotics almost all the time at the moment.
I am seeing the lymphodema nurse about lymphodema in my arm and I wear an elastic sleeve which has helped it a lot but at the moment I do not know what to do about the pain in my breast. The specialists say it is early days yet and do not seem unduly concerned.
Has anyone else had these problems and can anyone offer any advice please - even if it’s only to cheer me up!
Thanks
Christiane
hello Hi Christiane,
I am sorry to hear you are having problems, your post really struck a chord with me as like you I had a relatively “good” diagnosis, but still struggled at times.
I had WLE and lymph node clearance in March, and recovered well, had to have a haematoma drained a few times but fortunately had few problems with lymphoedema, and no infections. Like you I was dx grade 1 (downgraded from grade 2 dx at biopsy) but had quite a bit of surrounding DCIS and have lost about 25% of my lower left breast.
I was fine until towards the end of my radiotherapy in July when I started to get really bad pain, mostly in the outside area of the breast spreading up tp the armpit. The pain was constant and very sharp, like toothache, punctuated by frequent shooting pains through the whole breast. Despite doing the exercises, my armpit area also became stiffened and painful. This steadily got worse after rads finished and after a week I phoned the hospital who said that apparently the symptoms peak 2-3 weeks after treatment finishes. I saw the doctor there who said that the pain was probably caused by nerve damage from the surgery that had been aggravated by the rads. I was really depressed as the pain was much worse then even than after surgery, wearing a bra was agony. I could only sleep on my back and had to take painkillers every four hours, and wasn’t in a position to be able to take time off work. My skin had held up well and only blistered slightly fortunately.
About three weeks after the radiotherapy finished, it started to settle down and now six weeks on I am almost back to normal. I occasionally still have shooting pains but they don’t last very long. The breast is still a bit sore and I am still having to sleep on my back, but its ok. How long is it since you finished rads? I know it feels as if you’ll never be right but hang in there, it is early days yet really and hopefully things will improve given time.
I’m thinking of you, I hope you feel better soon and manage to have a nice weekend, let us know how you’re doing.
Take care,
Nicky x
Hello Nickyc Hello Nickyc - Thanks for your reply.
I too have had sharp shooting pains but they don’t happen very often now. I too have lost about 25% of my lower left breast. Also like you, wearing bras is agony. I have tried tight ones, loose ones, maternity ones amd not wearing a bra but cannot seem to get a comfortable one.
I did have a lot of pain from my breast up to my arm pit but that isn’t too bad now either. My biggest problem is the pain and swelling in the nipple area and surrounding tissue. The swelling and hardness is internal and feels about the size of the cricket ball. I am not sleeping well. I cannot lie on my back because the swelling seems to hurt more in that position. After a lot of shuffling I usually find a position fairly comfortable on my side – but I keep waking up – every 2 hours.
I am small chested so the internal hard swelling is a large proportion of my chest and feels so heavy.
I finished my radiotherapy at the end of July – 7 weeks ago - but I was having this problem in the nipple area before the radiotherapy treatment started. It was aggravated by the radiotherapy but the oncologist did not want to stop the radiotherapy treatment and said it would probably settle down after the treatment. It has got easier but the internal hardness like a solid ball is still there as is the pain in the nipple area and surrounding breast. It is not too bad first thing in the morning but gets worse as the day goes on. Part of the swelling turns blue simlar to a bruise but that disappears in the morning until the next night.
The thinking now is that although I have a haematoma I also have lymphodema in the area too.
They would not drain the haematoma during radiotherapy and now they do not want to insert a needle because I keep having infections in the area. I am permanently on antibiotics at the moment.
I work part-time but I have not been able to go back yet. I work with very demanding special needs children and my GP will not let me go back to that situation yet. I was hoping to start back this September but the way I feel at the moment I really don’t know when it will be and that is not very satisfactory for the school.
When I asked the doctor will I ever get right his answer was ‘I am not a crystal ball!’ which did not sound very encouraging! I went home and burst into tears.
Thank you very much for your reply. I appreciate it very much.
Perhaps I just have to give it all more time. I have already been told by many sources that I am trying to run before I can walk!
Thanks again.
Christiane
Advice and Support Hi Christiane
I am sorry to hear you are experiencing such pain and discomfort. Often with detailed inquiries like this our helpline can be the best source of information and support.
You can call the helpline on 0808 800 6000
Monday to Friday 9am-5pm and Saturday 9am-2pm.
The team is able to talk about both technical and emotional issues surrounding breast cancer and breast health.
They can talk through the complexities of different treatments and conditions and I am sure you would be able to answer some of the questions you have.
Breast Cancer Care also has a successful Ask the Nurse Service for which I have posted the link below, they will be able to offer further support and advice:
breastcancercare.org.uk/content.php?page_id=119
I hope this helps and please carry on posting to the forums as I am sure you will find plenty of help and support here.
Best wishes
Host
Breast Cancer Care
Breast Cancer Care Host Dear Breast Care Host
Thank you very much for your suggestions.
I had already spoken to your helpline and she was very understanding and helpful. Her advice was to see the GP or my oncologist. I went back to my doctor.
I did not know about the ‘Ask the Nurse’ service and I am going down that route now - but I would still appreciate any advice from anyone out there who may have suffered or is suffering from the same thing as me ie lymphodema of the breast particularly in the nipple area and/or a haematoma in the area and could offer me some practical advice.
Thanks
Christiane
lymphodema hi christiane
I to have lymphodema of the breast and the pain is sometimes
intolerable, i have visitied by breast nurse and doctor who tell
me it is all down to the surgery and rads, i finished my rads
in jan and expected the pain to have settled down by now but
apparently it can last for months (sorry if thats not what you
wanted to hear), i have been ref to the lympho clinic and have
had two weeks of intensive massage but after a week it seems
to be back, they advise a 20 minute massage 3 times a day
and regular exercises. I do feel i get down and try as i might
somedays i feel really weepy, it doesnt help that my dearest
friend has now been diagnosed with bc and i feel that i need
all my energies to support her and dont have any left for myself,
does that sound selfish. I would add that i would liken my pain
to mastitus which i had when i had my children.
Hope this helps, it is great that we have this site, to help each other
keep you chin up
gill
By the way i have to do the massage myself which is not easy
as my arm is still very stiff, still it gives me a bit of a chuckle some
of the positions i have to get into to achieve a successful massage!!!
gillya Hello Gill
Thank you so much for taking the time to reply to me about my problem. I am sorry that you are also suffering from lymphodema of the breast, the same as me. I agree that the pain is like mastitis.
I didn’t realise that lymph glands were such an important part of my body and that without them one could get so many problems!
I am going to the lymphodema clinic next week and I am hopeful that they will teach me how to do the massaging. I believe it is a special way of massaging. Cannot wait to get started on it. I am intrigued to know these positions you get into whilst massaging! The mind boggles!!!
I am sorry you have a friend who you now have to support through breast cancer but you must also look after yourself. No. You are not being selfish. I have now learned that I must try and look after myself. If I feel like a nap in the middle of the day I have one and I don’t feel quite so guilty now as I did!
I agree. This is a wonderful website where we can all help each other. It is nice to have so many friends who are in similar positions and can give support and help.
I hope your lymphodema will soon start to get better. We must make time for the massaging.
Please write again and let me know how you’re getting on.
Take care.
Christiane
Lymphodema of the breast Hello all
How are you all?
Me! Not too good at the moment. Feeling very sorry for myself. As well as my lymphodema in the breast - I have got another infection of the breast. About to go on my 4th set of antibiotics. Each time it is a double dose and for two weeks at a time.
Has anyone else had to have antibiotics for so long? Will the infection ever go away?
The worst part is I cannot drink an alcoholic drink. Would love to have a glass or two. I think I would feel a lot better then!!
Best wishes to you all.
Christiane