Seroma and lymphodaema 2 years post mastectomy

Dear NessMol

Thank you for getting in touch on our Online Community, I’m Sue one of the information nurses on the Support Line. We hope you are finding this and the Breast cancer forum both helpful and supportive.

This must understandably be difficult and uncomfortable for you, struggling with what is happening since having your mastectomy surgery 2 years ago.

Because you continue with symptoms and have also developed a new one (frozen shoulder) we would always advice for you to seek medical advice straightaway, in order to discuss what is happening with your hospital team consultant, clinical nurse specialist or GP. They will be able to assess you and offer the most appropriate advice and treatment, if needed. It’s always better to report any new issues or concerns, in order that you receive the right support and help.

Lymphoedema can unfortunately develop months or years after cancer treatment. The swelling is caused by the build-up of lymph fluid in the tissues and can happen because the lymph system is no longer working properly, due to damage caused by cancer or cancer treatment.

There are different treatments available which can help reduce swelling, discomfort, and fluid build-up. If you are under the care of a lymphodema specialist, it’s certainly worth discussing these with them to see if any of them are a suitable option for you.

If you do not have a lymphoedema specialist taking care of you, we would encourage for you to speak with your hospital team or GP as they may be able to refer you to one and offer you further advice.

There are also ways to self-care and manage lymphoedema yourself, including good skin care, eating a well-balanced diet, and keeping yourself active. Breast Cancer Now (previously Care) have more information about this which you may find beneficial.

You may also find the Lymphodema Support Network helpful; this charity offers lots of valuable information and support.

I hope you find this helpful and please don’t hesitate to get back in touch with us as needed.

Best wishes

Sue

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: DT/SMG

Many thanks Sue.

I will certainly follow up with both the breast unit and lymphodaema clinic. I  am also thinking about using a sharpie to mark my water levels! Would this be useful?

Ness

Hi NessMol,

Thanks for getting back in touch. I hope you found Sue’s reply helpful and managed to get in touch with your cancer team and lymphoedema clinic yesterday.

I wonder if you mean using a sharpie to track the swelling?

We often use the method of drawing round an affect area with pen when someone has a suspected cellulitis. This is a skin infection that often needs antibiotics and can become very serious/ life threatening if not treated properly. Drawing round the affected red/ swollen area can help to visualise if things are improving or getting worse (especially if different people are going to be reviewing it) which in turn helps to decide if an alternative treatment is needed.

We would not usually use this method for someone who has lymphoedema, as the treatment itself would not necessarily change if the affected area gets larger. And although lymphoedema can cause a lot of symptoms and affect your daily function and ability to carry out day to day tasks it does not come with the same risks that cellulitis does.

For that reason, we would not recommend using a sharpie to track any changes. 

I hope this helps. And please don’t hesitate to get back in touch if you have any more questions. You can also call our support line if you think it might help to chat to a nurse on the phone.

Best wishes, 

Amy C, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: AC/DC

Sorry for not being back in touch. I haven't been back in touch with the breast team because they discharged me on 2nd November . Yhey recommended that I didn't have the seroma drained due to the risk of infection. The swelling I was thinking about marking is, I think,  fluid from the lymphodaema in my arm which is affecting the area over my left ribs. It is this area where I  feel the swelling is spreading.  It's also very itchy so I have now stopped wearing my bra and prosthesis. Feeling very low 

Hi again NessMol,

No need to apologise for not replying – we’re here to support you at times that suit you. It sounds like you’ve had a tough time recently. I’m so sorry to be reading the impact this is having on you. I can see my colleagues have offered you some great suggestions for dealing with the swelling and taking your concerns to your team at the hospital that I hope you’ve been able to take some action on.

Feeling low, however, is something that you could maybe use some help with too? It is a great first step saying it ‘out loud’ and we’d encourage you to talk with your GP about how you are feeling. There are many things that can help. Sometimes just being able to talk to somebody can ease the burden and help you see things differently. Please do pick up the phone and chat with one our friendly nurses and we can help you work out a plan to help you move forwards and start to feel better.

Our Support Line is open 0800 – 2000 every day of the week – we’ll be glad to chat with you when you are ready.

Take care of yourself,

Kirstine – Macmillan

Cancer Information Nurse Specialist

Our ref: AP