Pretty sure I've got it

Hi Ladies,
I do hope you are all ok.
Cant believe I am back here posting.
I’ve been 100% great since finishing treatment end of feb 2011 and have made a full recovery but now - call me pessamistic - i’m pretty sure I have Lymphoedema.
My arm and breast on my affected side is swollen down to my hand, heavy and achey and a bit painful with loss of motion.
I am so upset and scared of looking disfigured. My breast care nurse has got me an appointment for Thursday but I’m so worried it will continue to swell before then.
I have moved on as well as I possibly can and even though my treatment finished less than a year ago it feels like another era. I am gutted gutted to be dealing with a potential disfigurment.
If anyone has any advice on coping I would be very appreciative.
Thank you and I wish you all good things x

Cannoliwings, sorry you are having to deal with a fresh challenge. It sounds as though you are very in touch with your body. My understanding is that often- though not always- there is a trigger for lymphodema. In my case, I just had very dry hands. My daughter was in hospital and so I was using very harsh soap and had no moisutriser.
Its good that you have an appointment so quickly as prompt response is meant to help. I would suggest elevating your arm as much as possible between now and then- so whenever you are sitting down. Moisturise well. There are exercises you can do. If you look at some of the old threads you will find them. Or, the Haven do a DVD.
I was diagnosed with lymphodema in October. I have it in both arms (I had lymph clearance both sides) but in one arm its very mild and I don’t need a sleeve. In the other, it is severe and esp in the hand and fingers which has proved difficult. Like you, emotionally, it came as a bitter blow. I think its yet another reminder (a visible one) of our expeience with breast cancer. I am trying to look at it positively, but its hard. On the other hand, its like everything to do with breast cancer - ultimately you learn to cope and live with it. Not always happily, but grateful to be alive…
Rattles, xx

thanks Rattles - much appreciated.
sounds like you are coping as well as possible.
i think i’ll need a lot of support with this.
I dot feel like I’ll cope well at all.
I’m just getting my life back together as a single woman after my long term relationship broke down after treatment. i felt so ugly and rejected and i’m just starting to feel like an attractive young single woman who can have raltionships with men. the idea that I could be disfigured to any extent scares the hell out of me.
I know there are people who deal with a lot worse but I’m just not sure how I’ll do it.
My looks mean a massive amount to me, especially at the moment.
But of course I am greatful to be alive and for everything I have.
Gosh - its a tough one isnt it.
thanks for your words xx

Hi cannoliwings. I am sorry you seem to have developed this condition and I hope you get it treated very soon. Rattles has given lots of good advice about what you can do while you wait for your appointment. I also worry a lot about the swelling being disfiguring, especially as it quite noticeable in my fingers, but I think with early treatment it can be brought under control.
I don’t have much advice in terms of how it affects your feelings about your looks, except to say that I feel the same way. Before breast cancer and lymphoedema I did think of myself as a reasonably attractive, healthy, young woman and now I don’t feel I am any of those things. I feel much older. I don’t feel healthy. And I certainly don’t feel attractive. I have lost a breast, my hair, and now I have to wear a glove and sleeve every day for the rest of my life. No one needs to know about the breast unless I tell them and my hair is growing back. But the glove instantly tells the world there is something wrong with me. I hate getting dressed in the morning and if I go shopping I wonder whether clothes will match my compression garments (and nothing does really). At the same time I know there are people who deal with much worse and I am lucky to be cancer free as far as I know. But that doesn’t stop me feeling sorry for myself sometimes.
I really hope this hasn’t made you feel worse, I am just trying to say that you are not alone in how you feel. It is very hard, but I suppose people adjust with time. I hope your appointment is useful and remember to be kind to yourself x

Lacuna, hello, I just posted on the other thread. Cannoliwings- you have been through a tough time of it. You will find the strength to cope, but it is hard. Like Lacuna, feel it is very visible and hard to explain. Also, as a slim, used-to-be-very-fit woman, I feel like I followed all the rules and so its very unfair. Hopefully, by being seen promptly, you can get access to the support you need.
Let us know if we can be of any more help. Rattles x

thanks ladies, it’s really sweet of you to be so supportive. i think looking good is such an important part of feeling good so i am going to do whatever i need to boost that. i’ve been assessed and i do have it - got my ct scan tomorrow morning and then clinic appint within two weeks. hope its really mild and managable. will let you know how i get on. sending you beautiful and shockingly attractive good wishes xxx

Hiya Cannoliwings - I developed lymphoedema about a month ago and this is 13 months after a radical mx so I did think I had got away with it. Like you my arm and hand became swollen, heavy and achey. I have been seen at the clinic and they said it was “mild” and didn’t need a compression sleeve. But I am very concious of it and wear long sleeves all the time now. My granddaughter who is only 4 asked me today why I had one big arm and one small arm and that was on what I thought was a good day! I’ve been shown manual lymphatic drainage massage and given a big tub of cream to use. Just need to get into a good daily routine with it. Seems like half my day is taken up with dealing with the side effects of the cancer treatments I have had including Letrazole! Aching joints, dry skin, lack of drive in most departments! BUT - I am still here and I truely believe that things can only get better. I am down for a breast reconstruction on March 22nd and I hope the brings the torch for me to shine and find where my MOJO is.

i feel for all you ladys!!! i also have lymphodema in my arm and my breast, very painful i go to lymphodema clinic once a week to have tapes put on, but my boob is so sore when these go on but they say i have to have them on to train the lymph drainage system, how to drain again its a small price to pay after havingbreast cancer, but i just want to feel and look normal again too, they tell you to move on!!! but as soon as you do somethink else happens!!! also the side effects of tamoxafen aching joints and stiffness doesnt help i hope we are all sorted out soon xx