Wondered if anyone can give me advice. For some time now I have been waking with a swollen hand on the mastectomy side and my chest swells, as the day progresses, on that side too - becomes painful to wear bra and as I haven’t had reconstruction, therefore can’t wear prosthesis either. This has got considerably worse now over the past 2wks and my whole arm is now aching and feels very painful and my fingers are swollen. Does anyone else have this problem?
Seren
Hi Seren,
You don’t say whether you had lymph nodes removed. If you did you may be showing signs of lymphedema fir which you will need further advice from your breast care nurse as this does just go away in time without treatment/excercises.
If you didn’t then I am not sure what this may be, I have had a mastectomy without reconstruction although uncomfortable at times I can’t say it is that painful.
Again perhaps go back to the BC nurse for advice.
Other folks on this sight will be able to help you too so I hope you get plenty of replies.
Good luck
Carol
Hi Carol
Thanks for the reply.
Had 7 nodes removed at the time - mastectomy was 2yrs ago but the swelling is much more recent - didn’t think you could get lymphoedema at this stage.
Seren
You can get lymphoedema at any stage. It certainly sounds like it to me.
Hi Seren,
I have lymphoedema in my right hand. The back of my hand swells, also my fingers a bit. I also have slight swelling on my chest which comes & goes. My hand is not too bad, certain things set it off. I am seen at a lymphoedema clinic - you will need to visit your GP and then he can refer you to whatever service you have near you.
It is important to look after your hand & arm on the mastectomy side. Try not to do anything that will strain it, and keep all the skin well moisturised. When putting moisturiser on (aqueous cream is fine) use light movements and an upward stroking movement. This helps the lymph fluid, which is just below the skin, to flow up the arm. Do your upper arm first, then lower arm, then hand. The lymphoedema nurse explained it to me, saying the blockage of lymph fluid is like a traffic jam - you have to get the front of the queue moving before the back can move, this is why you start with the upper arm.
This is something you can do for yourself while you are waiting to see a specialist. And if it isn’t lymphoedema, applying moisturiser isn’t going to do any harm.
Hi Seren
I definitely think you should see your BCN as soon as possible. This does sound like lymphoedema which can occur at any time after removal of lymph nodes. Sometimes lymphoedema can be a sign of a local or regional recurrence (it was for me) so its important to get checked out by your BCN who will know whether you should see a doctor for further tests.
best wishes
Jane
Hi Seren
I got lymphoedema in my affected arm 10years after my lumpectomy! Please do get yours checked by your BCN as soon as possible.
Marilyn x
Like Marilyn I got lymphoedema way down the road after my initial surgery - 11 years after my initial diagnosis.
Pinkdove
Hi Seren,
When you get to see a lymphoedema nurse ask about Kinesio tex tape. it is just like a rol, of plaster that you put across the back of your hand and it helps take the swelling down, along with learning how to do the massage you should be ok.
I started with mild lymphoedema 2 years after mastectomy and lymph removal. i can now control it , it is worse in hot weather and i have learnt not to carry anything with that arm and just to be careful. Do get to see the nurse though it will help.
Marg
Hi Seren
I got lymphoedema in my breast 2 yrs ago, not in my arm, after initial WLE and total axillary removal in 2003. It is very swollen and I can only sleep on the right side with my arm on top of a big pillow. Thought I had IBC, but surgeon says not. Only lymphoedema clinic is at a hospice in Plymouth, and I don’t want to go there…yet!
Take care.
Liz.
Thanks to everyone who replied to my post with helpful advice. Been out of circulation for a while so was so grateful to see your replies - after reading them I am definitely going to ask my G.P. about lymphoedema and how to get assessed. Guess I was of the opinion that if I had done all the exercises etc. and had got this far without a problem then it was more likely to be something less serious - maybe wishful thinking now I have read your collective experiences of lymphoedema !
Many thanks
Seren X