Hi, this happened to me after my mastectomy & I had to have it drained 4 or 5 times.  I hope you have someone who can offer help & transport nearby x

Hi 

yes this fluid build up took several months to settle it’s like a seroma , fluid being taken don’t make any difference it just builds up again it takes months to settle down good luck xx 

im 3 years out and can still see puffy rss in that area 

• mine used to sting too this is normal after full node clearance x 

Thanks for your reply. Had my third drainage this morning and it's already feeling swollen again. Finding it painful to do the exercises. I guess it will slowly lessen, fingers crossed. x

Thanks for your reply. Yes, mine stings too. 

Hi Lyricoflight,

I had a double mastectomy 16 years ago and had a lot of swelling after this. It was aspirated a number of times before it eventually settled down. It is common to have some swelling after surgery and the medical staff don't usually remove any fluid unless it is very swollen This is because by aspirating the area continuously, they are to some extent encouraging further build up - it's a bit of a chicken and egg situation. If it's painful, they've got to try and relieve it. It will settle down eventually.

I am sorry to hear that you found the hospital transport so tiring. Most areas have volunteer drivers who can pick you up from home and take you to and from the hospital. Perhaps this would be easier for you? Ask about this, next time you visit the hospital or phone your specialist nurse for advice.

Do please keep in touch and let us know when your swelling settles. We are always here for you.

Kind regards,

Jolamine xx 

Hello Jolamine   I have had it aspirated 3 times now and due for a 4th on Monday. It is so painful and uncomfortable I don't think I can just leave it. The swelling where all my lymph nodes have been removed swells up to the size of a tennis ball. It is painful to put my arm down or to do anything, like picking something up, sleeping etc. The nurse looked quite shocked at the size on Friday. She said just keep coming back. I see the surgeon Wednesday for my biopsy results so he may be able to offer more advice. Regarding transport I have to be wheeled into/out of an ambulance because I am disabled. I can't get into a car. Life would be so much easier if I could. Hospital transport is very busy and quite often they are a couple of hours late picking you up. When I had shingles I waited 8 hours in A & E for a lift home. I have just generally felt tired since being diagnosed in March and the trips to the cancer clinic make me feel even more tired. If my daughter can't get time off work I go on my own.

Hi Lyricoflight,

When it is as large and painful as you describe, you need to keep getting it aspirated until it settles down. I know how difficult it is to get around when you are disabled and am familiar with all about the vagaries of hospital transport, but it sounds as if this may be your only option. This must be difficult for you, when you feel so tired. Unfortunately, tiredness is another legacy of a cancer diagnosis.

It sounds as if you may need a few more visits to get the swelling aspirated before it eventually settles. I hope that your consultation on Wednesday goes well. Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Had swollen area aspirated for a 4th time. Saw a consultant after who said I should try and leave it now as hopefully the body will start to reabsorb the fluid. He said if you keep having the fluid removed it will just fill up again and also there is a risk of infection.

Had biopsy results Wednesday and not good news. No cancer cells in margin of breast lump but 20 lymph nodes removed and 9 have cancer cells in the margins. Now have to wait 2/3 weeks to see an oncologist. Also need to have another CT scan not just to look for cancer. I have a nodule on my lung too. Was told right at the beginning chemo probably wouldn't be an option for me due to such bad health so radiotherapy might be only option. Petrified that might not be enough and having nightmares about leaving my kids. 

Hi Lyricoflight,

What the consultant said is right, aspirating does encourage more fluid build up. I am so sorry to hear that your biopsy results were not good. Try to think positively - not easy, I know! Radiotherapy could be enough - I doubt that you would have been offered this. if your care team didn't feel that it could. How old are your kids? You've got to fight this with everything you've got for the sake of your kids. We're all right behind you.

Please keep in touch.

Kind regards,

Jolamine xx