Lymphodema - the most hidden of effects?

[lola111]

Hi Nattyoo

Thanks for your message.   My swelling is under control - comes and goes - my oncologist was not interested at all in it telling me that it was normal.  So as you say it is easier to live with if you are told it is normal - although it does feel like a bit of a fob off when they don't really look!

[Nattyoo]

Hi Lola, I had a mastectomy and auxiliary clearance five weeks ago.
Have found that if I lifted anything it led to swelling. Surgeon said it was haemotomas and could be drained if they got worse. One on the front of my breast scar was like half and egg. I kept doing gentle stretching exercises throughout but didn't life heavy things and only started driving this week.
They have disappeared and I have started chemo and all is well.
I find I need reassurance that what we are experiencing is 'normal'. One can put up with almost anything if we're not frightened or worried, can't we?
Best wishes x

[lola111]

Hi Indigo52, sorry for my late reply.  I am still struggling with my swollen/ squishy feeling in my armpit but have decided that it doesn't warrent an emergency rush into the hospital.  Just as well as my appointment with my oncologist has been put back two weeks!  I am trying to do some exercises to encourage movement of the lymph plus some strokes which are sort of like what the masseuse would do, hopefully. I know that some masseurs will do lymph node massages but no doubt they would be nervous of touching me!  I just can't help being bemused by the swelling focussing in my armpit rather than my breast.

[Indigo52]

Hi Lola,
I don't know if my experience is relevant to you, but when I had my surgery (lumpectomy and axilliary clearance), I was left with 2 large haematomas under my arm and in my breast. I was in the hospital for 7.30am and out by 2pm! As I couldn't perform the required exercises without pain I sort the help of a physiotherapist trained in lymphodema. I thought she would help me with the arm exercises but she checked my arm movements, said they were fine and proceeded to attack the swellings! I went 3 times the first week,twice the second, once the third, fourth and fifth and they were massaged away. It could be that this technique could be of benefit to you. She used tissues to push the fluid towards the lymph glands by my clavicle. Anyway whatever you decide to do good luck with it and let us know how you get on.
Stay strong, best wishes
Indigo52 x

[lola111]

I hope it is OK to join this thread.  I had radiotherapy 3 weeks ago today and over the last few days I have had a noticable swelling in my armpit.  I asked the oncological nurse about it and she was not worried but suggested that at my appointment with the oncologist, which is in 10 days time, they might drain any surplus fluid off.  Like a lot of you on this thread I was very worried about the risk of lymphoedema when first diagnosed and had to be persuaded to have the SBN. Would draining off the fluid be a good or bad move - I would rather find a natural way round it if that gave a better longer term prognosis and hence minimise any chances of lymphoedema developing? thanks in advance

[Atat]

There is more information available on lymphoedema network site.
My bracelet came from same co. already mentioned.

[jannie13]

Thanks.
my info on it has been...no gardening washing up in gloves if your cut clean and if red go for antibiotics no blood pressure or needles watch for swelling...that's it .

[Nanny_Sal]

I got mine from

www.theidbandco.com

[jannie13]

I've had 2 stays in Hillingdon and have asked but they have no bracelet or other system according to both a & e and ward staff....where do you get the brackets from please?

[Atat]

I am very pleased with my silicone medi alert bracelets. Have one in pink and one in lilac. They seem very robust and should last, I feel.
Atat

[Nanny_Sal]

Hi jannie,

Just wanted to say there are medical alert bracelets available. I wear one which looks like one of the plastic charity bands. Also if you had to have a stay in hospital they do do ones that are the same design as the name wristbands that you have when admitted.

I started to wear one when every time I went to the doctors they would always try to take blood from my at risk side!

Xxxx

[jannie13]

I'm scared every time I go to a & e there is no system for marking arms so if your too ill or asleep they try to put BP monitor or inject arm nearest them every time. last time I kept telling every nurse who came in and said why isn't there a system? woke in the morning to a patients relatives screaming that they had injected the wrong arm and look at it...that could have been me..

[Rattles]

And also liking the feature on the Breast Cancer Care Home page. 😀

Rattles

[Lucy_BCC]

Thanks very much for the feedback Rattles, I will pass your comments on to the team concerned

Best wishes
Lucy BCC

[Rattles]

Just wanting to say thank you to Breast Cancer Care for highlighting lymphodema on Face Book!

Its made my day!😁 Rattles

PS Atat - thank goodness you were able to approach a different hospital! X

[Atat]

Hi Rattles

I contacted the lympho clinic where I'd had my radiotherapy and they saw me a week later. Brilliant. My appt in the county where I live and had my op is in Jan 2015. That was the earliest appt they could give me. Crazy!!

[Rattles]

Its good that you have already seen an improvement so soon. I've come across a few ladies who have also had this experience. Though my lymphodema has improved dramatically, unfortunately, I have to wear a hand piece and sleeve or it just fills with swelling, very quickly. The compression aggrevates my neuropathy so I feel the biggest loss is sensation and dexterity.

Howdid you access treatment in the end (I seem to remember you had a long wait?)

Like you, I feel angry about the poor provision and lack of support.

Rattlesx

[Atat]

Thanks Rattles. Yes, she mentioned what you said. Also to wear it when driving car, hanging out washing etc.

initially I was told to wear it all day but now that is not necessary.

The lympho 'nurse' I saw was also a chartered physiotherapist, she or her colleague aim to see all patients pre-op either in pre-assessment clinic or on day of op. Patients also have group sessions post op to check their exercises/arm movements, and continued advice re care of their arm!!! Unbelievable!! I had nothing like that at the hospital where I had my op!!

The variation in standards of care is appalling & I feel quite angry about it.

Atat

[Rattles]

Atat - I'm so glad you managed to get a sleeve and some treatment. I'd suggest wearing your sleeve a few hours before, and after flying and doing movements - even if you are sitting, you can do the excerises. I've found this helpful.

I'm sure there are complex reasons for the lack of trained nurses. My own view - arguably cynical - is that services for lymphodema are costly and long term. I think charities also have to target their scarce resources and so they sign-post on to services like LSN as they have expertise in this area. But as you know, its when you are first diagnosed you want those practical tips which are are so helpful ie washing, travel.

Helen - I'd be more than happy to talk to the Helpline and assist Breast Cancer Care in identifying gaps and how these might be addressed.I'd be surprised to learn there was untapped support but I'd love to be wrong! You can respond/message as appropriate. There really is a gap between need and provision - the accounts on these threads bear witness to it.

But, the point I wanted to make was in relation to the impact of overlooking lymphodema in the hidden effects campaign and my disappointment. Thank you for letting me make it.

Rattles

[Atat]

Lymphoedema services are almost non existent in certain parts of the country. 3 months wait in this part of the country, not helped by the referral not being received by my not brilliant, so far, BCN!!! The reason I mention this is because it's well worth checking that referral has been sent/received, so appt isn't delayed further.
Fortunately I've been able to get prompt treatment elsewhere which means that my mild lymphodema has been treated during the reversible phase, and I will have a sleeve to wear during a flight which is coming up soon - a big relief

Can't understand why there is such a shortage of lymphodema nurses. Apparently the training is quite straightforward. When I signed my consent form I realised lymhoedema was a risk, hopefully a small one since I had a SNB, however I assumed that if I did, there'd be the resourses/facilities for early diagnosis and treatment.
Atat

[HelenL_BCC]

Hi again Rattles,

Thank you for continuing to share your feelings and experiences of Lymphoedema – we’re listening with keen interest.

I wonder if we could put you in touch with your local Breast Cancer Care services manager, via our Helpline? They’d be happy to discuss this in greater detail, and to talk more about the support that might be available.

Warm wishes,

Helen

[Nanny_Sal]

Hi Ladies

I was diagnosed with Lymphoedema in my hand and arm, a few weeks ago! Like some of you have said this was my biggest fear, after the initial BC diagnosis. This is forever 😞

I have an appointment with the Lymphoedema nurse at the end of November. That will be approx 8wks on from me first noticing the swelling. I did everything that the leaflets/online tell you to do. But I still got it.

I've spoken to my BCN and was told that Maggies have some sort of support group! Which I will definitely look in to. I feel like this is just another thing to deal with, when I have been trying so hard to be 'normal' again.

It's hard and frustrating when you are speaking to family and friends and they don't know what your talking about. So many of my friends have said "hope it gets better soon" they just don't understand. But why should they. Like you have said no one knows enough about this.

Treatment/survival rates for BC has come a long way, but now they need to offer more support for those of us left with life long issues, following treatment.

Don't get me wrong I am truly grateful for the treatment I have had. But I never expected to have to deal with menopausal symptoms and Lymphoedema at 39years old!

Rattles and anyone else feeling c**p! Sending you a ((((((((((BIG HUG))))))))) Just remember we will always be here for each other. Maybe we need to teach the professionals a thing or two!! Xx

[Rattles]

I'm so glad others agree.

Helen - thank you, but its not enough.

As I said, I'm not usually so critical and wholeheartedly support BCC but though I saw the blog, and I've read the information, I can't help feeling this whole topic is swept under the carpet, as I said 'hidden' in comparison with other issues you champion so well. Lymphodema on the 'moving forward' course is aimed at prevention, not living with the condition and I've had the unpleasant experience of being seen as a source of fear when I try and hide my compression garment from view from other women afraid of developing this condition.

Shall I tell you what the reality is? GP's who don't know what lymphodema is, long waiting lists to access an appointment even though we know prompt treatment can prevent swelling escalating, poor and inconsistent advice about exercise, managing swelling, travel. Struggling to get correctly fitting compression garments. Not knowing where to go to access MLD. Don't get me started on the cost.

My lymphodema is a direct result of my treatment for breast cancer.  I'm a member of LSN but as great an organization as it is, its still my view that as the only charity devoted to the psychosocial support of individuals with breast cancer, you could do so, so much more. If you don't, who will?

Rattles

[Phyllida61]

This needs to be said.  I haven't got lympodema but am all too aware that I could do something at any point that might trigger it so I feel as if I am constantly trying to dodge the bullet.   In many ways I found it the most frightening aspect of breast cancer treatment and would spend hours poring over the internet for stories of hope and successful treatment (I started the microsurgery thread).  I finished my treatment two years ago but still monitor the lymphodema thread.  It makes me so cross that it is so woefully underfunded.   I couldn't have cared less about lack of eyebrows, hair, eyelashes etc - I just wanted someone to tell me that if I ever developed lymphodema there would be treatment and support available.  Instead my fears were dismissed.  I was told that my local hospital had a 3 month waiting list.

[HelenL_BCC]

Hi Rattles,

Thanks very much for sharing your thoughts on hidden effects; we’re really keen to hear what people think. It helps us to improve campaigns and ensure they’re as inclusive as possible.

We recently ran a blog about Lymphoedema that one of our Nurses, Marretje, wrote. You can find it here: http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/lymphoedema. I can understand that it would’ve got missed as we haven’t highlighted it on the Forum. Apologies, this is something we aim to change so that all of our blogs are more visible to users – watch this space!

We also have information about living with Lymphoedema on our website, including a booklet. Although we’re not currently running a standalone local course or session on this topic, we do cover Lymphoedema in the Moving Forward courses. The specialist organisation The Lymphoedema Support Network is also well worth a look. I’ll be sure to let our Services team know about your feedback, too.

Thanks and warm wishes,

Helen 

[katytc]

Am in total agreement Rattles, as you say loads of information about prevention but hardly anything, anywhere about what happens when you do have it. 

Will watch with interest xx

[Lakeslover]

Hi Rattles,

I just wanted to say that I totally agree with you. We have to live with the effects of lymphodema for ever, and it is a constant reminder of the cancer.

[Rattles]

Thank you Jo.

Hair and eye lashes (mostly) grow back. Lymphodema is forever. Rattles

[Jo_BCC]

Hi Rattles

Thank you for your post, I wil pass your comments on to our managers.

Kind regards,

Jo, Moderator

[Rattles]

I've come to have an uncharacteristic moan.

The hidden effects campaign is a great way to draw attention to those aspects of treatment which are less apparent, but no less difficult, and to include women with a primary and secondary diagnosis.

 How disappointing then that lymphodema is overlooked. Hidden even from the charity which does so much to support those affected by breast cancer.

There is so much information on prevention, but for many living with long term lymphodema is a chronic and debilitating condition. Support is limited and patchy. It would be relatively easy to set up a session on 'coping with lymphodema', MLD and some techniques to manage, the chance to talk to others......

Sorry for being so critical. Rattles,