This is my first post so just to intoduce myself, I live in Spain and was diagnosed with DCIS in both breasts last September. I had to have a bilateral mastectomy and lymph nodes removed from both sides too, followed by chemo and I have just one more cycle of chemo to go. Although I have had quite an easy time compared to other people’s experiences,I have found it difficult to come to terms with and they give you very little information and only the essential help here. I am very worried about lymphoedema as I have had some swelling and stiffness under both arms with restricted movement. The oncologist told me to expect this to happen for the rest of my life and I could have physio and massage if I feel I need it. Has anyone else had this problem who can shre their experiences? Thankyou.
Hi there
What a shame you don’t have a good support system like our Breast Care Nurses. You’ve come to the right place as the women on here are very supportive and quite a few will have had problems with swelling.
Swelling and stiffness are very common after a mastectomy and node removal. It doesn’t necessarily mean you’ll develop lymphoedema. There are some simple exercises you can do and precautions you can take to improve mobility and reduce the lymphoedema risk. Breast Cancer Care have some very good leaflets on this website. Here is a link to some of their information
breastcancercare.org.uk/breast-cancer-breast-health/treatment-side-effects/surgery/lymphoedema/
Your Onc is right about the risk being a permanent feature. You will need to exercise your arms and follow the care advice for the rest of your life. It becomes second nature after a while. Your surgery was fairly recent and it’s quite likely that the swelling and stiffness will reduce over time. If you decide to have massage be very careful about who you go to. Only someone with experience of working with lymphatic massage should do it. Your medical team can probably recommend someone.
best wishes, Jan
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Thanks for the replies, I do do exercises every day but sometimes womder if I’m doing the right ones! I will keep plodding on and see how things go.
Hi Onlyme, I too live in Spain, South of Malaga, not sure where you are.
I have had all my treatment here, I was DX Dec 2009, Your right it’s not easy although very good treatment we are not offered the back up here like you get in the UK, ie, Someone who can speak to you without going through a translator, although since been DX I can now manage most medical terms.
I too have Lymhodemea, some days worse than others, last night I couldn’t lift a kettle, undo my bra etc. Today quite painful, and constant pins and needles. I also have it in my breast and chest wall so is very painful.
Sorry not much help, but here if you need to talk.
Love Teresa.
Hi Onlyme,
I am treated in the U.K. measurements of both arms were taken pre and post op. Then at 3/6/9/ monthly intervals. I was diagnosed at 6mths with mild lymhpoedema and commenced specific exercises and other care management straight away. The Lymphoedema Support Network produce very good info online, leaflets and DVD’s format. It is early days but the emphasis of management at my unit,centre of excellence,seems to be early diagnosis and management-all done at home, bit of a pain in the beginning but done when watching T.V. etc now and actually quite relaxing. Re. the pain/stiffness could this be cording? Iam nearly 8mth post op and only just getting full mobility, following physio/massage, like you I had pain and stiffness, If physio as been offered you can’t loose anything even if they only give you exercices to do at home.
Hope you get sorted
Best wishes Barb.
Hi onlyme,
Are there any fluidlike swellings on your chest wall or your arms? If not, it sounds more like cording which can be helped with physio or exersizes.
There is a posting on here which is archived but you should be able to access it. One person has described the exersizes she was given.
If you look on the left hand bottom of the page under categories, then click on archive, undergoing treatment you should be able to find it.
This is where I found it;
Home > Community > Forums > Archive > Archive - Undergoing treatment > Help Exercises for Cording following surgery
These exersizes are the same as the ones I was given and they worked for me. I had to do them twice a day and I saw a difference quite quickly.
Good luck.
E
Is it common to get pain in arm on affected side post op after full clearance of lymph nodes? My armpit is still numb, the arm pit to elbow is so painful, lower arm from elbow down is fine and havent lost any power at all.
I had full clearance following WLE and SNB and straight away was in lot of pain, then it went totally numb for about a week and for 3 days the pain has been excruciating even on very strong pain relief, still in pain.
My drain fell out 24 hours post op, was to be in for a week to stop fluid build up, so far leaked only first 24 hours and no excessive swelling. I’m wondering if its start of lymphoedema and is that normally so painful. I do have good movement but wonder if i have damaged everthing more as was so numb probably overdid the excercises. Totally fed up as was doing so well following original surgery and then they found 2/4 nodes affected so having to go through chemo soon although still no results back from the full clearance. Last time the results took longer it was because they found the cancer, i know the results will be what they are and no point worrying but you do anyway and I cope ok daytime but having horrendous nightmares so not sleeping well, am going to ring gp monday see if i can get something to help.
Any insight would be helpful.
thanks Bev x
Hi Bev
I am posting a link to the BCC publication ‘Your operation and recovery’ which contains information about possible problems after surgery, you can read it via this link:
Please call our helpline for further support and information, the lines are open weekdays 9-5 and Sat 9-2 on 0808 800 6000.
Take care
Lucy
thank you Lucy x