Does anyone have lymphoedema of the breast?

[Rebec]

If you do, how exactly does it look in your particular case?

[linda6]

Hi Rebec I do have some lymphoedema in the breast I get pain and a deep crawling sensation under my skin. My breast does not look any different (I have had reconstruction) but you can feel that there is fluid there and it gets a little larger, when this happens I use massage and exercise so the lymph moves and if the pain becomes troublesome I take Ibuprofen.

[Rebec in reply to linda6]

Thanks for the answer. I saw my oncologist last week and he told me that my breast is similar to 20% of women after having had radiotherapy, but my breast is reddish and warmer than the other one and has, what feels like, quite a large scar tissue. So now I am not sure if it's lymphoedema and/or cellulitus. I have the feeling that doctors don't know much about either. Are you happy with your reconstruction and how long ago was it?

[linda6]

I has my reconstruction 8 years ago yes, I am happy with it, a woman surgeon carried out the reconstruction without an implant. The radiation does cause some hardness and scar tissue and sometimes it does get warm and sometimes it feels much colder than the natural breast. In my experience when I get the warmer feeling it is related to the lymoehodema in my arm. Have you had a reconstruction?.

[Rebec in reply to linda6]

Hi linda6,

I wrote a long message yesterday, but then, I received a message saying that something went wrong and they will try to rectify it. I see that it doesn't appear, so I deduce that it is lost. Anyway, I'll try and rewrite it!

My surgeon told me to have a lumpectomy, although I felt ready to go ahead and cut as much as possible so as not to need too much treatment afterwards. You did the right thing in having a reconstruction instead of an implant. Did they use part of the back muscle? I would like to congratulate you on 8 post-operative years and wish you a long and healthy life. I had my operation last November and am on anastrozole. What were you given and did you follow any specific diet? I try to have, as much as possible, a free dairy diet, and eat mainly fish and hardly any meat! My daughter read about the need to reduce as much as possible food that might contain growth hormones.

Rebec

[linda6 in reply to Rebec]

Hi Rebec,

Thankyou, yes I did have the reconstruction taken from my back muscle the surgeon said she did not put an implant in as the breast looked more natural. I also took Arimidex for 6 years so I probably know some of the side effects you may be experiencing. I ran a breast cancer support group which helped me a lot and found out that information is very hard to get from professionals so you have to find out yourself. I took Arimidex for six years and I found that my hair started to thin so I started to take Horsetail capsules which contain silica which is also good for bones. I don't eat red meat but then again I haven't for 30 years. I eat fish, turkey, chicken, eggs and cheese so I eat dairy because of the calcium content. As you are probably aware when you are taking Arimidex or Anastrozole you need to take calcium supplements.Your diet seems very healthy to me and Its very early days for you but if I can be of any help with any information let me know.

[Bestbrush in reply to linda6]

How did your consultant create a natural looking breast from just a back muscle? Do you know exactly how she achieved that?

[linda6 in reply to Bestbrush]

The operation is called Latissimus dorsi flap reconstruction without implant. The result is very good.

[nan2high]

Hi Rebec

I had a lumpectomy about 2 1/2 years ago followed by radiation which badly burned much of my breast. After this healed, the burned area has shrunk and become cone shaped, hard in texture; darkish brown in colour and the skin is pitted like orange peel - the g.p. describes this as peau d'orange, french for orange peel. Where the cone ends the lymphodema starts and the swollen, pale skin is much warmer than my other breast, at least 3 - 4 degrees, it is hot, often painful and very itchy at times. I also have a swelling in my midriff below the breast, not hot or itchy but this is lymphodema too.

I was quite disturbed by all this, was worried I had an infection or that the cancer had returned and kept asking the breast nurse and the oncologist if it was normal, their answer was - this happens - all the mammograms and scans were clear but no one told me I had lymphodema until my g.p. did, about 7 weeks ago. Since then I have found a therapist at our local hospital and have massage - M.L.D. ( manual lymphatic drainage) and she also taught me how to do it myself (simple lymphatic drainage).

I think it is unusual to have breast lymphodema, arms and legs affected seem more usual. The oncologist measured my arms last week and was surprised to find them identical but told me that may change in the future - cheery b*****! not!!

There seems to be a general lack of concern or even interest in this complaint which is quite awful as is the acceptance that it is treatable but not cureable. It will be hard for me to accept this attitude.

I find this a very helpful site, thanks and good luck to all.

Nan2high

[Rebec in reply to nan2high]

Hi Nan2high,

Thank you very much for your informative and detailed story connected to your experience. I found a lymphoedema specialist by myself although I was told by my breast nurse that my GP will advise me, but he had no idea whatesoever! I got information of compression garments in .... the States as I have a relative who lives there, but one can't be measured by 'post'. Am glad that you managed to get your affected arm to be the same size as your other one. Congratulations! I think that it's a pity that nobody talks about these problems when they talk about breast cancer. Lymphoedema and everything associated with it is an extreme burden in daily life. I was told that I walk sometimes with my back bent a bit.

What hormone treatment have you been offered? From what I understand, you didn't need any chemotherapy. How long was your radiotherapy?

All the best,

Rebec

[nan2high in reply to Rebec]

Hi Rebec

The point is, I think, I don't have lymphodema in my arm ( as yet and hopefully never) just in my left breast and trunk but the oncologist seems to think I can't have one without the other.This is probably why it went undiagnosed for over 2 years. I had about 30 sessions of radiotherapy over a 6 week period ending early February 2011.

Re the hormone treatment, I have tried 4 different prescriptions. Femara, Arimidex, Tamoxifen and finally Aromasin. I had extreme reactions to all of these drugs. Aching joints; severe itching everywhere skin touches skin; dripping sinus and a constant cough; really bad headaches; blurred vision; severe lower back pain; breathlessness; memory loss; confusion; an aching, burning, swollen breast and the worst case of nappy rash in the world.

I stuck the first 3 drugs for a few weeks each and the Aromasin for over a year as they kept telling me how important it was that I take them so the cancer wouldn't return. I had zero quality of life and finally stopped taking them in Feb. this year. As I am gradually recovering, many of the side affects are diminishing. I have just had a series of tests so my blood levels are good; cholesteral & blood pressure controlled well by drugs; lungs clear; bone scan good; eye sight and memory back to normal; rash nearly away. I am so much better but as the side effects diminished the problem of my breast came into stronger focus and I determined to push that issue as I was worried about the heat and swelling. So here I am - Mrs Breast & Trunk Lymphodema 2013.

The therapist measured me for a compression garment which arrived 2 weeks ago. Unfortunately it neither fits nor compresses and as my smaller tho' still swollen breast wobbles about unsupported it gets sandpapered by the loose fit of the waistcoat type garment while my other one is flattened. Chocolate fireguard!! I don't know whether to blame the measurements or the manufacture. I will try to modify it if I can, it needs lining and cups to fit me.

[Rebec in reply to nan2high]

Hi nan2high,

I have some names of people dealing with compression garments but they are in the States. They were given to me by a relative who lives overthere and who gives mld to lymphoedema sufferers. The items seem to be very well made so if you have all the measurements taken, you might be interested in getting in touch with these people and see what they can do for you. Here are the names:

Farrow

Solaris

Jovipac

Circaid

I am angry for not having checked myself as I should but my mother lived until she was 98, so I thought I would start worrying about my health when I get to be in my late 70. Anyway, one should be happy for being alive today instead of 40-50 years ago when the treatment was less successful. You have to tell yourself that after so many sessions of radiation, the cancer cells must have been completely obliterated, so you can just check yourself from time to time and be optimistic as, I read, that having a positive outlook on life will make us live much longer!

[Athinakay in reply to nan2high]

Hi, I bought the Belisse vest and it is really nice and smooth but offers great compression with no restriction under the armpit.It is the only thing I can wear. The breast that had two surgeries is still larger than the one that didn't due to the lymphedema but somehow the vest holds both in place with no rubbing. I ordered it through Harris Hospice so that it can be fitted properly but I paid for it. I recently found another product by Juzo, it is like a long sleeve shirt, I will give it a try as I have upper arm swelling along with the torso and breast.There are "bubbles" that you can wear and they are soft and help some to move the fluid. I would return the garment if possible. If ill fitting, it will do no good.

[Rebec in reply to Athinakay]

Have you tried the Lympha Press compression therapy? I went to an open day and tried a compression that covers half the torso plus the affected arm as well. The representative of the company selling the machine is a member of our forum. Tell me uf you want any details.

Have a lovely week.

Rebec

[norberte]

hi rebec

i didn't have reconstruction, so the lymphoedema on my torso rampages around merrily without hindrance!

the lsn dvd for arm simple lymphatic drainiage (sld - the one you can do yourself) also covers breast - worth the money if you can spare it

lymphoedema.org/Menu5/Index...

& yes, if it's hot & you feel a bit temperature-y generally, get it checked out by your gp or lymphoedema specialist & don't do sld - you don't want to move potentially infected lymph around - & consider getting a supply of 'standby' antibi's at home so you can start taking them as soon as you think cellulitis might be starting

dunno if you've come across the breastcancercare.org.uk website, but the forums on there might be useful, & if you scroll down the questions on here there was another question about breast lymphoedema that might be worth looking at too

[Rebec in reply to norberte]

Hi norberte,

Many thanks for the information given. I have the feeling that lymphoedema diesn't seem to be taken seriously enough by the doctors. It seems that in the States, it's easier to find the right specialists and the compression garments.

I'm going to send for the DVD.

[norberte]

couldn't agree more - the services nationally are so patchy, & even where services do exist gp's don't seem to know about them

someone on the bcc website was saying that in germany you get to go to lovely rehab centres for a few weeks where everything gets sorted out, & you can go back every year ... i might start learning german!

[Rebec in reply to norberte]

The specialist whom I started seeing (about the lymphoedema) learned her 'trade' in Germany and she told me that she was taken aback by the lack of knowledge she discovered in the UK when she arrived here many years ago. Unfortunateky, not much have changed since then. I haven't tried to find out what the situation is in France or Belgium as their health service is equal maybe only to the German one. Shall we try there or maybe we can try and do something here!!

[Rebec]

To keep you all informed with problems which affect me and maybe might affect some of you too and for which there aren't any clear solutions. I saw a lymphoedema nurse (visit booked last January) and in seeing some reddness on my left breast recommended 500mg of Flucloxacillin. I started thinking that it might not be cellulitis as I had it for quite some time, and I didn't have temperature, so after taking a few of the higher dose decided to ask my GP for the 250mg. Yesterday, I saw my oncologist, again an appointment fixed ages ago, and had the feeling he wouldn't have recommended any type of antibiotics as he keeps saying that the hardening of parts of the breast is due to radiation. I asked if I couldn't have a blood test to see exactly if I have an infection or not, but was told that I can't. If, for some reason or other, we develop a bit of redness in the breast, we should be able to be tested as not to have to swallow antibiotics if it's not necessary. I was given a prescription, for 'home' use for 2 weeks; this is in case I develop an infection. What I don't understand is what type of infection he was thinking about - I have no idea. I forgot to ask specifically but I presume that it has to do with cellulitis. I told my oncologist that it would have been better had I had a mastectomy and he said 'yes'.

[linda6]

Hi Rebec,

After radiotherapy you do get redness, hardness and sometimes warmth in that area from radiotherapy. I asked both the lymphoedema nurse and my doctor (on separate occasions)and they both said it was not cellulitis and not to worry unless you have a temperature.. Unfotunately these are side effects from the radiotherapy but unfortunately mine have never gone away but they have lessend.

[Rebec]

Hi linda6, Thanks for letting me know about it. I finished my radiotherapy last March. I don't know who to trust as I thought that a breast nurse who works as a lymphoedema specialist (she recommends people, she doesn't treat them herself) doesn't know the difference between redness due to radios after effect and cellulitis. How long after your radiotherapy treatment are you now?

[Athinakay]

Thank you for your reply and wishes, my breast looks very swollen and the skin is very taut. It is all hard under the skin ( I can even go without bra although do not as the swelling gets worse ). It feels heavy and painful.