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Breast Lymphoedema only. arm not affected

33 REPLIES 33
bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Well done on finishing RT, Kary. Hope things resolve to at least some degree. Best wishes.

Kary
Member

Re: Breast Lymphoedema only. arm not affected

Yes I think that is what they are all thinking iv had 3 lots of antibiotics now since surgery for very painful very red  very hot breast,i don't think they actually know what it is,they are imaging daily ATM when I get my rt because of swelling ,iv three more to go.Thank you for all your advice and help,i do think it is a larger breast thing,i just don't know how long to leave it after rt before I really start stamping my feet,thank you all x

 

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Also, I meant to say, it may be that some of the swelling is related to the surgery and the radiotherapy and that it's not all lymphoedema... so give it time. 

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Hello from me too, Kary. I echo what Amero says. Persevere with the MLD. If you can't get therapy from a professional, you can always go online and print off some instructions for self lypmhatic drainage. There are also videos on youtube that show you exactly what to do. Mine sounds as if it was quite mild compared to yours but it is much better now and I am wearing a normal bra. I do hope you manage to get yours under control. With very best wishes.

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty.

 

Wishing you well. While it will probably not go completely you can do things to improve it.

 

Love Amero xxx

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty.

 

Wishing you well. While it will probably not go completely you can do things to improve it.

 

Love Amero xxx

Kary
Member

Re: Breast Lymphoedema only. arm not affected

Thank you for all the advice ladies,just a catch up ,swelling still getting bigger as the day goes on,it started to become very painful gain last Thursday and I seen one of the doctors ,I have been given more antibiotics,antiflamitories and pain killers,the doctor said she would keep an eye on it,iv had no further appointment ,I'm nine days into radiotherapy now 6 to go ,they will not do anything till after iv finished my radiotherapy,i am concerned as was told initially I had lymphoedema and I now know lots more about it,i can see this being quite a fight to get anything done,i think they are hoping it will settle down,i do hope so as I can't possibly go back to work with one breast like a melon! I will keep you all informed, X

 

 

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Check out mlduk.org.uk. Also, i'll direct message you with more info.
Kary
Member

Re: Breast Lymphoedema only. arm not affected

Thank you bravescholar I don't know what that is ? Il Google it,i just know it's not as should be x
Kary
Member

Re: Breast Lymphoedema only. arm not affected

Thank you Lottie,they are saying nothing can be done till after radiotherapy as it's early days and it may right itself,if I lie with my boob on a pillow it will leave a mark ,my bra leaves a large deep mark,im trying to keep it on as much as possible ,but it's hard when it's falling over the top,thank you I start rads  nxt Thursday il keep on and on about it until they refer me to see someone,it quite complicated as surgery n breast care nurse are in one hospital and treatment in another,i know it's not right,thanks again Lottie ,k x

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Hi Kary. I was diagnosed with breast lymphoedema post radiotherapy but I also had seromas after surgery and cellulitis during RT, both of which could have been factors, and a bad skin reaction to RT. Once things had calmed down, I had 15 sessions of manual lymphatic drainage, which really helped, and now I do self LD every day which more or less keeps things in check. Keep asking questions and insist you get what you need. Best wishes.
lottie63
Member

Re: Breast Lymphoedema only. arm not affected

Hi Kary,

             I do not wish to be the bearer of bad news but ... IF it is lymphodema in your breast( which I also have ) it will not go completely, it can be managed and there are things that can help relieve the swelling etc but once you have lymphodema it is for life im afraid and you should not be told otherwise by the doctors or oncologists as it gives false hope. so you really need to get it checked out, I also had a very swollen breast during radiotherapy it was also quite pink and angry looking ( it still is ) and this was partly put down to the effect of rads but on inspection by the lymphodema clinic it was confirmed to be breast lymphodema, a general rule is if your breast is swollen, pink, and your bra leaves marks/indentations in the breast it is probably down to lymphodema, but you really need to get it seen to be sure

 

All the best & good luck

 

L x

Kary
Member

Re: Breast Lymphoedema only. arm not affected

Hello ladies,i had my tumour removed on 5 august ,iv had my planning appt today I go for my rads next week,i have very large breasts ,my poorly one was very very swollen,iv had antibiotics it helped initially but it's still swollen ,seen oncologist 2 weeks ago she said I had lymphoedema in my breast,but hoped it would right itself after rads.I was very concerned today as the later it got the bigger it was getting I was worried about the markings, and lo and behold the radiographer's took me very seriously,im having to have rads at the same time daily etc etc,my surgeon and oncologist don't seen to be bothered about it,my breast nurse says if it doesn't settle by time rads end they will send me to lymphoedema clinic,its not overly sore,tho I have had a sore shoulder,dont know if there's a connection, I had a night out first time since surgery on Saturday and by the time I came home it was like an enormous melon!Any advice would be welcome ,I know they are hoping that it's early days and it will go but I need to get back to work after my rads,i certainly can't go looking like this,Help X

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Thought I'd write a few lines to say that 15 sessions of almost daily MLD has made a big difference to the swelling. I now have to make sure I do the drainage myself.

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Thank you so much for that, Amero. I'm going to be fitted today at a shop recommended by the oncologist and will keep my fingers crossed that MLD works. All the best. 

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hello Bravescholar,

 

The best thing you can do is get a proper fitting -ideally from someone who has experience dealing with ladies who have lymphoedema or reconstruction. Bras that cut in at the wrong place will make the lymphoedema worse. You will soon know if this is happening as it will be very painful. I went to a specialist bra shop where the fitter adjusted the straps to ensure a good fit and some compression on the lymphoedema side. I took my lymph pad with me so she could make sure it fitted with that in place. As my good side is much smaller than my swollen side I wear additional padding to fill the cup so my neckline on tops is not lopsided. I also wear a compression bra in bed at night. This is not a great fit as it does not have separate cups and does not offer uplift -only compression, but is fine in bed -a good sports bra from somewhere like marks and Spencer would be ideal. I find during the day a soft cup bra that has been well fitted is best as you need the uplift to stop the lymph draining down into the breast -compression bras only flatten your bust. I am glad to hear you will be having MLD. I have found this really effective and now do it to myself daily between clinic treatments. I now have a noticeable softening and reduction in pain.

 

Best of luck to you.

 

Love Amero xxx

bravescholar
Member

Re: Breast Lymphoedema only. arm not affected

Hi all. I'm new to this thread. I have breast lymphoedema following a mastectomy, immediate DIEP flap reconstruction and ANC in December followed by three weeks of rads in February. I'm to have MLD. Can anyone recommend a good "lymphoedema bra"? Thanks!

Zeppa
Member

Re: Breast Lymphoedema only. arm not affected

Hi Amero,

 

The whole thing is a real pain but at least after six years I have accepted that I need ongoing treatment! The drainage does work.

 

My current therapist has recently been to a seminar and they used fluoroscopy to show the movement of lymph in the body. I think these were videos done in some lab in Oxford. Apparently the drainage was massively best from the opposite armpit. She also said that there are low level light lasers that can be used to break down fibrosis, which is what I have got in the breast near the operation scar, very hard bits. She is going to try to borrow such a machine. It would be wonderful if this worked and had a long-term effect.

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hi Zeppa.

 

In answer to your question I did have axillary node clearance so that is the reason why I had lymphoedema ultimately. It developed sometime after radiotherapy and I think naturally caused swelling in my breast as opposed to my arm because they were so large -it always takes the easiest path to travel. My arms are naturally quite thin and muscular so I don't know if that is the reason why. I also had a large seroma drained from my armpit during radiotherapy so that may not have helped. 

 

I have seen a huge improvement due to manual lymphatic drainage and kinesio tape. Hope you do too.

 

Love Amero xxx

Zeppa
Member

Re: Breast Lymphoedema only. arm not affected

Hi dillybub,

 

I have read about the possibility of not having the lymph nodes cleared and I am sure your surgeon can advise you so you can make an informed decision.

 

amera, did you have all the lymph nodes removed on that side? I believe that arm lymphoedema does not always result from that, but it can, and actually you can get it even if you have only a few nodes removed, and you have to be careful, for instance I've been told not to do gardening or serve overarm in tennis. I've also been told not to lie around in hot water or steam baths, but I do. However, can you get breast lymphoedema because of node clearance? I have never heard of lymphoedema coming from lymph collecting in large breasts or lack of support bras. I get it because radiotherapy disturbed the lymph channels.

 

In my case I only have 5 lymph nodes removed, all clear. And I do not have arm lymphoedema. What I do have is breast lymphoedema. I had a WLE and have huge breasts. I gather the lymph problems were caused by radiotherapy, and I also have cording round an operation scar where the lymph collects, so I get manual lymphatic drainage once a week.

 

But I have never heard of people getting breast lymphoedema because of lymph node clearance, but of course I only know about my own case.

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hello Dilys. I really hope you are not put off surgery because of stories like mine. Lymphoedema is manageable even if you are unlucky enough to get it. I posted before when it was really bad, but with treatment I have already seen an improvement -I think it's important to catch it early and get treatment before it gets bad. I also think the exercises they ask you to do are really important. I didn't get lymphoedema until some time after surgery and radiotherapy when I had stopped doing the exercises. It's also very important not to carry anything heavy like shopping bags on the surgery side. I think what did it for me, saying that, was my very large breasts (32GG) as it tends to collect naturally in large heavy breasts. I also found it very difficult to get supportive bras in the right size without the underwire and that's what you need to avoid breast lymphoedema as its the gravity that gets you! If you take the right measures then I think you would be very unlucky to get it. I hope your surgery goes well. Love Amero xxx

Butterfly318
Member

Re: Breast Lymphoedema only. arm not affected

Morning Dillybub

 

It is difficult to get clear stats on how many people do suffer from Lymphoedma because generally only somebody with it will post and discuss it.  You are unlikely to get many replies from all the people who do not suffer.  Following diagnosis and treatment i am naturally in touch with many more people who have had surgery and who gets it really does seem to be random.

 

I had neo adjuvant Chemo with minimal response, Tumour was 5.5cm reduced to 4.2cm ?? (this were initial thoughts from scan etc).  I then had quadrantectomy leaving a gorgeous 36C/D...... needed further surgery to get margins... they found .5cm area of concern (some peoples tumours aren't that big) so had Mastectomy then radiotherapy.....  So the bottom line is i had three surgeries to same area then radiotherapy.  I am not slim but i walk lots / swim lots and had the area massaged after surgery.  I have some further reconstruction planned and do keep thinking maybe i am pushing my luck but i have not experienced Lymphodeoma at all, a little swelling post surgery but nothing major.  As i say i walked / did recommended exercises right through treatment (not being sanctimonious trust me that was hard and some days i wept but i figured when i sat and thought too much i still wept).....

 

My surgeon didn't really discuss the option of not having them removed.  Recommendation was ANC due to tumour size.  Pathology showed 4.2cm Tumour (it had never been bigger) with 1/23 nodes affected and all other nodes showed 'no response to Chemo' indicating it had never been in them.  

 

Hope this is helpful and i hope some other people who have had repeated surgery will post to reasure you.

 

Take Care and Good Luck with your treatment.  Butterfly x  

dillybub
Member

Re: Breast Lymphoedema only. arm not affected

I finish my last chemo T on the 22nd. I had an ultrasound this week and was told that the lymph nodes have shrunk as had the lump in my breast.  I am due to see my surgeon next week to discuss surgery whch includes removal of all lymph nodes.  I am terrified of getting lymphoedema. Has anyone or did anyone ever discuss not having the nodes removed, also if they are not all affected or have shrunk considerably why do we have to have them all out. I have spoken to my nurse about this but they dont seem to understand how I feel.

 

Would I be silly to refuse or to just ask for the infected ones to be removed. We have breast cancer, are going through hell, think there is light at the end of the tunnel only to end up with a life long condition and to be honest what sounds like a poor quality of life.

 

They admit more research needs to be done but that doesn't help us now.

 

Any thoughts gratefully received.

 

Regards Dilys x

 

 

 

 

 

 

Amero
Member

Re: Breast Lymphoedema only. arm not affected

So sorry to hear your news Kelly. I did not see your update when I posted my response. It is so unfair after all you have been through. I hope you get the best possible treatment.

 

Love and best wishes,

 

Amero xxx

Amero
Member

Re: Breast Lymphoedema only. arm not affected

Hello Both. I have also been diagnosed with lymphoedema in the breast but not the arm. I also have quite a lot of swelling in my armpit where I had a seroma (which was drained) during radiotherapy. I finished my radiotherapy in September and initially I did not have any swelling but over one weekend in November my breast swelled up massively and ended up in hospital with cellulitis and had to have intravenous antibiotics to clear it up. I therefore got a very quick appointment with lymphoedema clinic in December. I guess I was lucky, judging from your stories, to get seen so soon. I have a compression bra and will shortly be starting MLD and kinesio taping. I have a lot of pain with it. I also had chemo and rads and am on herceptin as it was HER2 positive. I have been struggling with the compression bra as it does not fit very well -I am slightly built with big breasts and it's massive on the shoulders. I think I have found someone who can alter it for me though. Sorry to hear about the recording. Don't we poor ladies have to go through a lot.

 

Love and Hugs Amero xx

 

KellyMc
Member

Re: Breast Lymphoedema only. arm not affected

Hi Torquay. Glad to hear you are making progress in getting treatment. Really pleased for you. Unfortunately since my last post I have had a reoccurence of my cancer. It has spread to my lymph nodes in neck and arm. And also in my breast bone. It is treatable but inoperable. I have 11 chemo sessions scheduled. I am still in a state of shock just now as I had been getting checked regularly during my lymphoedema treatment. It is triple negative again.
Torquay
Member

Re: Breast Lymphoedema only. arm not affected

Quick update, seen specialist nurse now, exercises seem to be helping, check up in next couple of weeks.

 

Torquay
Member

Re: Breast Lymphoedema only. arm not affected

Thanks, just waiting for appointment now.

KellyMc
Member

Re: Breast Lymphoedema only. arm not affected

Hi Torquay, sorry to hear that you have been diagnosed with lymphoedema but pleased you are eventually getting treatment. I was back and forth for 7 months before I was diagnosed. I have also developed cording in my arm which is extremely painful when getting physio. I hope you see the specialist soon and hopefully will hear from you again. xx
Torquay
Member

Re: Breast Lymphoedema only. arm not affected

Today I was told I have some lymphodema in my breast. It has been swollen and painful since radiotherapy last November. I am being referred to our local specialist clinic. Hoping that it can be sorted with some exercises. I don't have any arm symptoms at present. I am on hormonal treatment, did not have chemo. Not sure this is of any help, except you are not on your own
Zeppa
Member

Re: Breast Lymphoedema only. arm not affected

Sorry to hear about the cording. I have cording in the breast itself. It  isn't painful fortunately. I do think it could have been helped if I'd had some early treatment. I keep thinking it causes the lymph problems, but according to the radiologists it's their fault.

KellyMc
Member

Re: Breast Lymphoedema only. arm not affected

Many thanks Zeppa for replying to me and sending me the link. I have now been diagnosed with cording in my arm which is very sore. Cancer really is the gift that keeps on giving!!! I had no idea either that there could be so many side effects years later. Im struggling with the physio for the cording. I nearly fainted with the pain today. xx
Zeppa
Member

Re: Breast Lymphoedema only. arm not affected

Hi,

I'm replying because no one else has. I have got lymphoedema only in the breast and trunk. They say it's the radiotherapy that did it. I had treatment in 2008 in Germany. It was a year before I found out I needed treatment. It was easy to get lymphatic drainage there but I hated the thought of having it. I still have it once a week, back in the UK now. If I don't have MLD, the lymph hardens and it gets painful and takes a long time to recover. It seems I need more treatment of the breast itself where it gets hard than treatment around the underarm or groin where the lymph should flow away. The breast is still red but fortunately neither itchy nor painful, at least some of the time it gets itchy. I really must do more self lymphatic drainage but anyway, it is OK at the moment and above all I have got used to it. I was so angry when I realized I may need treatment for the rest of my life - I knew nothing about these after-effects of treatment.

 

I did go to a lymph clinic in Germany for three weeks once. They tried kinesiotype there but I have not kept it up. I have never had a compression garment either, because there is no easy solution. One thing I do use is a kind of foam rubber sheet with indentations which I cut to size and wear in my bra - it gives a bit of massage. It is called Komprex II and here is a picture on a German site:

 

http://www.apo-rot.de/details/komprex-ii-schaumstoffplatte-65x65-cm/2006722.html

 

Maybe you can find a therapist who can get it for you.

KellyMc
Member

Breast Lymphoedema only. arm not affected

Is there anyone who has BL only i.e without any symptoms on the arm. Ive just been recently diagnosed. Been on 2 courses of antibiotics already. Wearing tape and compression garment. Also attending clinic for drainage on a weekly basis. Im not on any meds for the BC as it was triple negative. Had chemo and rads though. xx