Oedema & fungating cancer : My good... - My Breast Cancer ...

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Oedema & fungating cancer

KT22 profile image

My good friend had a mastectomy a few years ago, she’s now got secondary fungating cancer & having the dressings changed daily by district nurses. They are very kind but don’t have experience of dressing this cancer. Now she has oedema in her hands & legs & getting conflicting advice on whether to put cream on or not. Her breast cancer nurse only phones occasionally & just says “ you’re doing well”. Has anyone any advice for my friend either regards to the fungating cancer or the oedema?

Many thanks.

8 Replies

Hi my first thought was to ring Macmillan help line they should be able to offer advice and possibly point her the right direction just google it

second thought was if she needs advice she should ring her breast care nurses team personally I gave never heard if them just ringing up I was lead to believe they were there for as long as you need them

third go to her GP if her hands and legs are swollen it maybe lymphodema, if so she needs to get referred to a clinic for that

Hope she gets it sorted

KT22 profile image
KT22 in reply to Iknitandstitch

Hi Iknitandstitch, firstly thank you so much for replying, secondly what an imaginative username! I love to knit & stitch too!

Sadly Macmillan haven’t been at all helpful to my friend, they offer sympathy & platitudes but say the district nurses are there for face to face situations.

The breast cancer nurse says she’s overworked as others are off sick & is always in a hurry when she calls…if my friend rings her it goes to answerphone so she calls back.

Her GP has taken her off pregablin which he says causes swelling. He prescribed a cream which the district nurses & the tissue viability nurse seem to disagree over its use.

My friend is exhausted & doesn’t know which way to turn. She’s hoping to go to the hospice for a bit of respite but they’re full & have a waiting list ( she’s on the list)

She’s in her 80s & hasn’t the strength to keep asking for help & being fobbed off. She can’t find anyone who has fungating cancer either. When she was diagnosed with breast cancer she found talking to others in the same situation reassuring.

Thank you again for caring I do appreciate it. X

Iknitandstitch profile image
Iknitandstitch in reply to KT22

Hi Yes I like my alias .. another one I have for email is "Theladywhoknits " now back to the subject I had never heard of fungating cancer so I googled it putting UK after the search words scrolled dow a d the first kne of anh jnteresg was cancer research uk ( I think )they have a nurse helpline 0808 800 4040 its exlpains the condition in everyday language , your friend needs the correct help and u fortunately sometimes you have to be a bit forceful she is lucky to have you as a caring friend -I got one she has been with me from the first appointment and every one since

Hugs Diane ( aka Iknitandstitch)

Many years ago I was a district nurse and can remember dressing fungating breast cancer. It can be quite a smelly ‘wound’ and we used dressings containing charcoal which helped to reduce the smell. Unfortunately the areas never get better. It was all about trying to keep the person comfy and as pain free as possible. I can’t see what harm putting cream on her hands and legs would do, but Maybe the hospice nurses would be willing to chat to your friend even if she’s not able to stay as an inpatient. Best wishes to you and your friend.

Thank you Clyde12 & Diane

I really appreciate your replies. It’s just been a nightmare trying to get some advice & help with this type of “wound”. We live in a semi rural location & it seems very few of the health professionals here have much experience of fungating cancer.

The hospice nurses have spoken to my friend when she was in for pain management before Christmas but as with everyone these days are always too busy for chats on the phone! She’s had conflicting advice from nurses there regarding her oedema which hasn’t helped.

I have given my friend the nurse helpline number & she will call them…thank you. Being over 80 she doesn’t really use the internet so I do research on her behalf. Hence my post on this group.

Diane, if you are on a cancer journey I wish you all the very best & send you a big hug. I lost my wonderful husband to secondary lung cancer during the pandemic.

Thank you both again for caring enough to reply…it’s very kind. Best wishes KT. X

Hello.

So sorry to hear about your friend. I was wondering if you should try PALS to discuss. nhs.uk/nhs-services/hospita...

You don't say what the problem is regarding the actual dressing of the wound. It she hurting whilst they do it? Or is it leaking out or smelling?

Re her legs - it is essential to keep the skin moisturised if they are swelling I would have thought as skin can split and then infection etc etc - the nurses should be recommending what to use too. Basic stuff for them I would have thought.

It does all sound rather awful in that the nurses aren't doing their job really... nice as they are, I'm sure. I think a call to the lead district nurse might help - but maybe leave it to Pals if you get no joy.

Sorry if I have misunderstood.

She's lucky to have you as such a good friend.

Best wishes

D

Hi I have trying to get an answer from my breast care nurses with no response so I started poking arond internet spoke with a BCN at "breast cancer now " they have BCN's you can talk to they answered my query

hope they can help

0808 800 6000

Diane

Hello - was just wondering if your friend has received the support she needs yet? Any success?

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