Lymphoedema 11 years on from cancer

Going through breast cancer treatment Lymphoedema
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Hi Everyone, I posted for the first time in years, but in another section of the forum and I have been signposted to here so I have copied and pasted what I wrote earlier:

Does anyone on here have ongoing lymphoedema? I am not sure which category I fit into. My HER2++ breast cancer was diagnosed 11 years ago and I had chemo, wide excision and radiotherapy plus Herceptin for 12 months. I was in a clinical trial to see how many people developed lymphoedema, which was good because I did. I received excellent support from the local Lewis Manning Hospice clinic and have coped over the years with regular private MLD (manual lymphatic drainage) massages, though these have to be self-funded. I have also kept up with self massaging techniques and I wear a compression sleeve.
Back in 2013, 2014 and 2015 I was so grateful to belong to this forum and I received such good support. This was especially helpful because my cancer had been diagnosed shortly after my husband had died unexpectedly.
There have been lots of ups and downs but my big problem at the moment is the lymphoedema, which has flared up a few times. I have been in hospital twice with cellulitis and recently my arm has swollen more than usual and is not responding to the massages.
Is there a section here, please, that deals with ongoing problems with lymphoedema? Talking to someone else who has coped with it would be really helpful. I am obviously really grateful that I am still alive but it is hard having a problem with your right arm when you are right-handed!
Greetings to all forum members and thanks to all who run this forum, it is invaluable.
Petal8

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Hi @petal8 and welcome back to this fabulous forum. I am also HER2+ and just finished my year of Herceptin. I haven’t experienced any lymphoedema yet but have been seen by the local NHS lymphoedema clinic with a follow up appointment in a few weeks time. I have some swelling to the sides of my boobs but they have said it’s not lymphoedema but have told me to do the manual lymphatic drainage regularly as prevention. Finger crossed it will work, I generally do it once a month.

I found the https://www.pennybrohn.org.uk charity lymphoedema online support very helpful.

I hope others that have had a similar experience to you will respond shortly.

:smiling_face_with_three_hearts:

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Hello @petal8

I have lymphedema in my right arm. It was diagnosed 13 months after my treatment finished. So I have been putting up with this since July 2022

I must admit it’s been nowhere near as bad as yours has. I wear my compression garment most of the time. The only time I don’t is when I’m lounging around before I get dressed on a lazy Saturday and Sunday morning and when I am sunbathing on holiday, on a sun bed, wearing SPF30 minimum. Since a flare up last year I wear a Comfiweave at night.

That flare up was in the spring of last year. I was caring for my husband and helping to move him around really caused it to swell up.

I have no problem getting in touch with my lymphedema team. Initially I went via a call to my BCN and since then call directly. After that flare-up, I had to go to a thicker, higher group compression sleeve and I was offered the pumping type of therapy that they offer because my lower arm was getting a little bit hard.

It took a few months for that treatment to be given; there are many more people who would be higher up the pecking order for it than me. Although a faff having to go several times a week for several weeks, the treatment was so relaxing - even if my arm did look like the Michelin Man with all the paraphernalia strapped to it!

At my worst, the difference between my two arms was 23%. When I had the lymphatic drainage treatment it was around 12% and came down to 8. Perhaps you could discuss having that with your team?

I had a follow up appointment just the other week and it’s 6%. The nurse was extremely pleased with the condition of my arm.

I found that my arm has improved over the last few months since I’ve been doing very, very light weights on the arm and shoulder machines at the gym.

I do put moisturising cream on after each shower but then I always did. I don’t tend to massage it. I do the exercises occasionally; more often than not when I’m driving longer distances.

I do have a little pocket of fluid at the breast bone end of my mastectomy scar. I wear Kinesiology tape for that Monday to Friday.

I am now back on the self-referral pathway. After a year I will drop off the team’s books but a call to my GP to request a new referral will be dealt with PDQ

Good luck managing this reminder of BC.

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Hi @petal8, I was treated for BC in October 2017 and developed lymphoedema in Spring 2018. I have it in my hand, arm, breast and back (right side). I wear a compression sleeve and mitten during the day and have a comfiweave for night time use. I used to be under the Lymphoedema Unit at the hospital I had surgery but they discharged me due to my uncooperative GP. I am now under a different clinic and have changed GP’s. I am not offered any other treatments and my condition is quite mild. Like you I kept getting regular flare up s (2-3 times a year). To cut a long story short I requested a referral for a 2nd opinion at a London hospital and I am now on a prophylactic (continuous) low dose antibiotic. They would like me to stay on it for 2 years. Since taking this treatment (January 2024) I haven’t had a flare up and I am hoping it will continue this way. Let me know if I can answer any questions you have. Michele x

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Thank you to all of you who have replied to me. I wasn’t sure if I should respond individually but I wanted to say it is much appreciated to hear from all of you.
When my lymphoedema started I did the self massage every day - for two years! - and it seemed to be under control so I gradually relaxed with wearing the compression sleeve and massaging, though, as I said previously, I do have MLD massaged every month. Lately, because of the flare-up I returned to the Lewis Manning clinic and I learnt the new method of self massage which incorporates using a soft, squishy ball to move the lymph around. Has anyone else seen this method?
I am a bit restricted on movement just now as I have a very painful right shoulder. It is probably caused by my osteoarthritis (which I have all over and started way back, courtesy of the chemo I had).
For this flare-up I also had an intensive course of antibiotics because they thought the swelling and hardness may have been an infection lurking. I absolutely dread having to go into hospital again because the veins in my left arm are shot after chemo and last time they managed to get a cannula in but then also managed to block my one good vein and now I have to have an ulrtasound because it is isn’t going down. Sorry to moan, it is just that one thing always seems to lead to another.
There is much improvement and last week I had 3 treatments with massage from the nurse using a mild electrical current which sounds horrendous but is actually fairly pleasant. Two more treatments this week and then hopefully the swelling will have gone down a lot. Gelbel, your treatment sounds intriguing!
I have also been given a Comfiwave sleeve but so far have only worn it in the evenings. They say these sleeves are having great results but my goodness, the deep grooves stay in my arm for hours! Is that normal?
We all have harrowing tales to tell and it is really good to be able to “talk” to each other and get reassurance that we are not alone, so thank you again for posting your replies.
Michele, which antibiotic have you been prescribed? What a shame your old GP was not helpful. Well done for changing, it is hard to see a doctor these days though I must say, if you have cellulitis they have to act quickly because it can be so dangerous.
Naughty_boob, thank you for the link. I will check it out now.
Thanks again for all sounding so cheerful.

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Hello petal8
Just a couple of things to add:
Rather than traipsing to and from a clinic for the pneumatic sleeve treatment, I invested in one to use at home (they are not cheap, but so convenient). I bought the Huntleigh Lymph Assist Hydroven 12 model for £1,000 and religiously sat with it on for 35 minutes every evening whilst watching telly (you could read instead!). I continued for quite a few months and it gradually more or less normalised my left arm and hand (which is where it manifested 6 weeks after my axillary clearance), bar a very slight puffiness between the base of my fingers on the back of my hand, and I’ve never been able to get my engagement/wedding rings back onto the correct finger. I have stopped for the time being but it is ready to recommission immediately at the first signs of a flare up.

With regard to the squishy ball, this was recommended to me to use during self lymphatic drainage massage. In order to empty lymph nodes along the route that were collecting the lymph during the massaging action - from proximal (shoulder/upper arm) to distal (hand/fingers) in sections. I was directed to squeeze the ball at the appropriate stages, under the arm, in the crook of the elbow, and in the palm of my hand. This helps to keep the lymph moving on and get picked up by the blood circulatory system.
(As I recall it being explained to me, but please do fact check method. Also, take a look online at the pneumatic arm pump.)

Hope this helps a little …

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Hi @petal8. I am allergic to penicillin (first choice for medical profession) so I am on 100mg Doxycycline once daily. I also have a two week emergency pack of a stronger antibiotic in case I get an infection. I use the squishy ball too but not all the time. I agree it is good to talk to fellow sufferers. I joined an Australian trial for the lymphoedema in my breast and have an amazing bra insert which has really helped. Michele x

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Hi, I am the opposite, I can take penicillin but I can’t take Doxycycline! When I have had cellulitis I have been given Flucloxacillin which works well but the downside is, if it is a prolonged course, they cause stomach pains. It is better given through a drip when in hospital to avoid that, but now my veins are shot they say it would have to be in my foot another time. I just pray I don’t need to go back in hospital. I also have emergency tablets at home in case I need to get on them quickly. Any problems have started at weekends or in holiday time so it is good to have them on hand. My first bad infection was caused by a tiny paper cut under a finger nail and the second one, earlier this year, was from a cut on my thumb. It is really hard to not get small injuries especially as it is on the hand I use most.
For my cancer I had a wide incision which left little flesh in the armpit and a slightly mis-shapen boob but I haven’t needed an insert. Is yours to fill up space or do you need it to add pressure to stop swelling?

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Hi, I had no idea there were such things as pneumatic sleeves! I have had 4 treatments with the electrical device that apparently breaks up the fibrosis and moves the lymph, with a last treatment tomorrow. My arm is definitely a bit smaller and softer and I have been given a new compression sleeve with handpiece so my hand doesn’t swell up as it had been doing lately. After all these years I thought things would have improved, not deteriorated for me! Don’t get me wrong, I am glad to still be here. When I had my breast cancer my sister had a different cancer at the same time and she isn’t here any more. If I feel a bit low about my arm, I tell myself I was the lucky one. It sounds like you have your lymphoedema under control and I hope it stays that way. All the best.

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Hi @petal8

Comfiweave grooves last for hours and hours and hours. It doesn’t bother me though. I go swimming once a week, first thing in the morning, no one’s commented at my arm looking like a 40-lane motorway :rofl:

As I’m not a self-massage person, I’ve not gone googling massage or the like. As such, I’ve not heard of the ball version. It makes sense though.

The treatment I had at hospital was pneumatic sleeves - industrial v what you can buy. I did look at that but can’t warrent the cost. I would do, if necessary, in the future.

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Hi! I wouldn’t have felt such panic if the grooves had been explained to me when I was given the Comfiwave sleeve. The leaflet just says it will leave marks, but not how deep and long-lasting they are! The nurse this morning said to me that it works in the same way as the electrical treatment I am having, in that it breaks down the fibrosis and then the lymph can move and not build up to cause swelling.
I had never even heard of pneumatic sleeves and I don’t know if they are a new thing for lymphoedema. There have certainly been some changes in cancer treatments in the last 10 years so I guess they make improvements all the time.

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Hi Petal8. I have had to have needles in unusual places including my foot. I had to have a cyst removed in my other breast and had the blood pressure cuff on my leg. The bra insert is to massage the breast to help the lymph fluid move around. I must have had quite a bit of swelling as I’m now two cups smaller on my right side. I don’t specifically know what caused my infections. Probably minor cuts. My job involves going into lofts and although I wear gloves I have occasionally got cuts but there was nothing obvious when I have had cellulitis.

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Can i ask what the bra insert is like. I was given a thick ridged piece of foam which is really obvious to see through my clothes. Thanks

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Hi. The insert is shaped a bit like a shoe insert. The narrower part extends to the side of the breast. I wear a very lightly padded bra and it isn’t visible. If you look up “chezleon” bra insert (based in Australia) they might send you a free insert (as part of a trial) although they are hoping to go into production this month

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Hi, I have primary Lymphodeoma in my legs (I was born with it and showed up after puberty around 16/17 years old). I’m in my 40’s now. I have yearly check ups at my local Lymphodeoma clinic, I have made to measure Jobst compression stockings and I bought a pump to massage my legs at home. If you’d like a pump at home, ask your clinician to help you order one through Hadnam. I think I paid around £2500 for the pump and 2 attachments, plus I’ve paid for the occasional MOT. I will need new attachments as some of the rubber elbows and joints have eroded.

Make sure you’re keeping your fluids up, plenty of good moisturiser (usually the ones the nurses recommend not the nice smelling ones in Boots), exercise, rest, elevate when needed. But I’m sure you know all this already.

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Hiya Soulie. I had BC HER2+, diagnosis August last year, surgery a 36mm tumour removed, chemo & radio, ongoing Herceptin, and Letrozole. All went as planned even though i was very unwell with chemo.
I guess due to imobility I’ve developed lymphoeddema in my leg. I’m as active as energy levels allow. I’m up to an hour walk daily, and do yoga and house work. The swelling goes down when ive exercised but fills again after sitting too long.
The Oncologist I saw last time didn’t seem interested in my swollen leg, brushing it off as nothing to worry about. But I am, and having read lots on the dreaded Internet not sure what to do now.

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Hi, there is this re the use of a ball for lymphatic drainage

Also this explains changes to pressure used for lymphatic drainage and has a link to the research.

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Hi, yes this is the new MLD treatment and I have watched the informative videos.
I queried the use of the ball under my arm because I have had pain in my shoulder and the top of my arm for a few months now. It may have been coincidence that it all started at the same time as I used the ball in self massage. It turns out my problems may actually be related to a spinal issue that also started at that time. I have now been diagnosed with stenosis of the spine and am to have an epidural injection to alleviate the pain. I have fingers crossed it will also relieve the arm pain which may have been caused by pressure on nerves in my back.
As luck would have it, the lymphoedema nurse was convinced I had stubborn cellulitis, hence the antibiotics and treatment. All seems to be improving but I am thinking I need to pursue getting an insert for my bra.
I am so sorry for people with lymphoedema in the legs, it is bad enough in the boob and arm. Good luck to everyone.

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I have been given another insert recently after being given the thick foam one like you initially. The new one is much thinner and contains cherry pits in the grooves. Much better than the other one.