Suddenly developing lymphodoema

Hi Liz, I am sooo sorry to hear your news. I had my surgery in Nov and like you have been excerising my arm regularly for fear of lymphodoema. Do you think you should go to a physio or specialist to confirm its lymphodoema. Oh it's never ending is it!?

Hi Liz

So sorry to hear you are getting lymphodema. I too had my glands taken out and am regimental about excercising etc but know that it can come on at any time. The one piece of advise I was given was to get onto your BC nurse immediately so she can organise for you to see a Lymph specialist physio. What hospital do you attend? I am in Beaumont and have had great access to physio. It is really important that you get it checked out as you can get all sorts of infections etc if you dont.

Love and light

S x

Hi Amaryllis,

I am really sorry to hear about your arm. I have not had this problem myself but from what I read it is really important to have it seen to very quickly. Don't be tempted to wait until Monday just because it is the weekend. Good luck.

Hugs

Kath

Hi Liz, I have been thinking about you and your last post, just wondering how you are getting on?

Hi Girls,
Sorry it's taken so long to reply - was having problems logging in.
Anyway I had a physio assessment last week & my right arm is just 5% bigger than the left so they are hopeful that it won't develop into full lymphoedema. I have to do different exercises every day & they will see me again in 2 weeks time. Thxs for advice to get it looked at quickly.
Liz

Hi just wondering did you break the skin in anyway on that side ?
I was told to be very carefull not to get any sort of cut which can set off the Lymphodema, I wear Gloves for Gardening and am very carefull with knifes in the kitchen also be carefull with sewing kneedles I am nearly two years on and I am still very aware of the dangers.
Take Care Claire

That is great news! Really glad you got it looked at and sorted! Sounds like you caught it in time, well done for catching it!!

Hi Liz and all,

Liz I am very glad that this was not too serious for you and I hope that you are still doing well.

I just wanted to share what my doctor said to me recently about lymphodema that I didn't know before. Apparently keeping my weight under control is a very significant way I can reduce the risk of lymphodema. (Not easy on Tamoxifen for sure )

Hugs

Kath

Hi Liz (and Shinner)

I'm sorry to hear you are going through all this. It's tough. I hope you are doing okay. I am a newly diagnosed melanoma patient and I have recently had all lymphnodes in my groin removed. I hope you don't mind me asking a few questions re. your arm care. You mentioned that after the surgery you 'did all of the physio and the exercises and abided by the recommended do's and don'ts etc. etc.' Could you tell me who provided physio, taught you exercises, and educated you on do's and don'ts ??? I am curious because I got none of the above support. No-one at any point mentioned the risk of leg lymphoedema to me. I am learning about it myself (and worrying) and making my own alternative plans to access help and support (all at a high cost!). I'm beginning to think/realise that the same support isn't there for melanoma patients. I need it too, it's as simple as that. I know well that you have enough concerns of your own. I would just like to do a bit more research for the benefit of melanoma patients.
Also, my leg is feeling much funnier than usual the last few days. I really don't like the tight and heavy feeling. It freaks me out to be honest - I presume it's mostly because it's a new experience for me. I know I will always have some fluid but I don't know yet how much discomfort is normal and how much is too much. I have some swelling but it seems to be more around the surgery site. Are you familiar with the tight and heavy feeling? Has anyone any advice for me on it? I am going to see a specialist about it next week. (I am annoyed and upset that I had to seek her out myself in the first place!) I hope she will be kind and caring.

Shinner, as with Liz above, I am sorry that you are also in this situation and I hope you are doing okay. You mentioned you had a B.C. nurse in Beaumount. Can I ask, during what part of your journey were you provided with her/him? Again, I have had no such support. It would have helped me alot (especially emotionally) to have had a melanoma nurse throughout my treatment.

Happy Saint Patrick's Day Annieo

Hi Anneio,

This might help to put your fears to rest. These brochures used to be easier to find on the site ...

http://www.cancer.ie/sites/default/file ... et_leg.pdf might help

Hugs

Kath

Thanks very much for that Kathleen. The society kindly sent that leaflet on to me a few weeks ago. (I have been doing the exercises) It seemed to be the only information they could give me at that time, over the phone. It was great to know that people with leg lymphodoema and those at risk for it (post cancer treatment) are recognised. It is mostly arm lymphodoema that is seen as far as I can tell.
Best wishes and thanks again for your help.
Annieo

Hi Annieo. So sorry to hear that you dont appear to be getting the type of support you evidently deserve. It is difficult enough to have to go through operations ect but to then be left with lymphodema and not knowing who to turn to is simply not acceptable. I was provided with a BC nurse on the day that I was diagnosed and she acted as a liaison between all the different consultants. A physiotherapist came to see me the morning of my surgery and gave me a booklet on mastectomy and reconstruction and lymphodema and she visited me after surgery. I was then referred to a specialist physio when I was out of hospital as my arm would not move( common with breast surgery) and I saw we for nealy 6 months. Everything was going ok but I started to get a dreadful pulling sensation and I rang my BC nurse and she sent me back to physio. I also took it upon myself to reasearch as much as possible into lymphodema and like all the other women on the site, I do my excercises and avoid extreme heat as this can bring it on. I also attend a cancer support centre and I would highly recommend that if there is one in your area that you contact them. The one I attend provides talks on Lymphodema and I am aware that there is an annual National Lymphodema seminar held, I think it is through St Lukes. The pain and heaviness you are feeling could just be down to surgery but I would get it checked out in your hopital, you should not have to pay to see someone. Excercise is key to keeping fluid retention at bay. I walk every day now and watch my diet as there is a link between Lymphodema and weight . Dont under any circumstances go for a massage on your legs as they could end up pushing the fluid around. A manual lymphatic drainage specialist is the only one I would allow near me and to be honest I dont think there are too many of them around. Try to keep moving, wear loose clothes and dont sit in hot baths. Sorry I cant give you any more advice but I think you shoud talk to your GP at least and see if he/she can provide more direction. Of course you are feeling the strain emotionally, it is a very challenging time but forums like this can really help, only just to know that you are not alone. You are welcome to talk to us at any stage.
Love and light
Sinéad

Thanks so much for all that information Sinéad. It was a great comfort to me to feel such support. You actually brought a smile to my face! Thank you. I am going to see an actual MLD specialist on Thursday privately. I am going to go ahead with it because I need the security of talking to someone trustworthy who can answer my questions i.e. what I can do and what I shouldn't do, exercises, compression socks etc. etc. As for the lack of support I experienced within the system I will continue to look into that in time and figure out what's going wrong (or went wrong). How, I don't know! But I'm starting to feel stronger and more able to stand back from it all. Thanks so much again. You have been lovely. Best wishes,
Annieo

Hi Annieo,

I just wanted to add that while lymphodema is a risk for us all, it is not a certainty.

Some of the lymph network reconstructs itself and exercise encourages this apparently. You will certainly get minor injuries occasionally like us all. Disinfect any cuts you might get. I find it useful to have some disinfectant and plasters in my bag or in the car just in case. You should probably have some of those blister plasters too. Just knowing I am equipped to deal with small cuts and grazes has helped me to be less fearful.

I hope you find the right support. It is so important.

Hugs

Kath