Losing lymph nodes after lung cancer

[Loramay]

Hi firstly sorry about the long post. I'm hoping someone can help last year I had my lower right lobe of my lung and lymph nodes removed due to lung cancer. I already have secondary lymphodema of both legs due to a motorbike accident in my teens and lipoedema.

After the operation I had a lot of complications and now have a domestic type of hospital bed which tips right up which has been wonderful for getting rid of the fluid from my legs, but the fluid is getting stuck in my stomach.

Pre op I asked when they said they would probably remove my lymph nodes I asked whether it would cause complications with draining fluid and I was told no the fluid would easily find a different route.

I have also had infections in my right breast where I get small nodules that are red, swollen and filled with pus. I use antiseptic cream to clear these up but sometimes it doesn't work and my breast becomes very hot swollen, hard and painful.

Thanks

[Lynora]

Loramay - where are you? Perhaps your GP or oncologist could refer you to the lymphoedema clinic, for MLD.

If the fluid is getting ‘stuck’ in your abdomen, it may need surgical intervention or aspiration.

[Loramay in reply to Lynora]

Hi lynora I'm with the lymphodema clinic in Chichester but I haven't seen them for a year as they said to get my lung cancer treated was the priority. Since then I have had every test under the sun as they think I have an auto immune disease and lymphodema again got sidelined as most weeks I have had at least one appointment usually more a week. I can't have MLD as it's only given to end of life patients and I have a leg ulcer as well which also meant I couldn't have chemo. Before all this I was going to have a machine at home that I wore but again that was put on hold due to the leg ulcer. I know I need to contact the clinic again but I'm so exhausted from all the other things that I was hoping someone knew of something I could do at home.

[Lynora in reply to Loramay]

You really need to get your GP on the case.

MLD can be used in most circumstances, and with leg ulcers - the therapists must have been concerned about other problems - but that was a year ago. Give them a call.

Are you getting home care for the ulcer?

(PS - in another life, I worked in an office North Pallant for a few years!!!)

[Loramay in reply to Lynora]

The district nurse visit twice a week now it was every day and at one point once a week because it heals over for a few weeks then breaks down again. You know this area well then.

I have never seen a therapist it was what I had been told by the team at Chichester. I have emailed them to see if they can see me or I have to ask my GP to contact them

[Perido in reply to Loramay]

Hi

Would you consider getting MLD privately? If you are in the UK, qualified practitioners can be found on: mlduk.org.uk/

If private MLD is not generally affordable for you, maybe you could ask if the practitioner could teach you simple lymphatic drainage (SLD) which you could then do yourself at home.

[Loramay in reply to Perido]

I have contacted my local therapist who said she would be willing to help me after my leg ulcer has healed (due to infection) and my health authority will only give mld to end of life patients