Unusual situation with Step Mum and cancer

[Switz]

This is grim reading, probably not for the squeamish. I’ll try and keep to the salient points.
My lovely step mum (63yrs) has aggressive breast cancer and isn’t expected to see the end of the summer. The tumour is immense and sits on her chest about 1 and a half times the size of a rugby ball. She also has lymphedema in the arm on that side filled with fluid. She can still get out, take dog on very short walks, go to supermarket etc, all with help and this is very important to her while it’s still possible.

In the last few weeks the tumour has broken through the skin on her chest which was inevitable given its size and rapid rate of growth. The main problem with that is that every couple of hours the wound floods like a running tap with clear fluid completely saturating the dressing and then starts going everywhere. The fluid can run out for up to an hour and they sit there mopping it up with tissues. If it happens at night it can saturate the sheets, her PJ's etc.

The doctors think its leaking from the lymphedema, it’s not an infection and it can’t be stopped. They also haven’t seen this before so don’t know how to effectively help. So, the help we need is: how can we dress this wound so the liquid doesn’t just come through the dressing and go everywhere meaning that she can’t leave the house. The sterile dressing must be the first line of defence but then what?

She’s feeling self-conscious enough and we desperately want to help solve this issue without further humiliation. Any ideas?

Sorry this is longer than I meant it to be.

[OldAndWornOut]

How about utilising tena pads, or something similar?
The poor soul..

[JemAppelleLafayette]

Hi OP, what a terrible situation. Love to you and your lovely SM.
I think it sounds like a fungating wound, which is fairly common in late stage breast cancer. Does your mum have palliative care involvement?

[ItsTheKissing]

Have you got the district nurses involved or the palliative care team? There are numerous dressings available to deal with this; perhaps ask for a referral to a wound care nurse specialist?

[JemAppelleLafayette]

Sorry, step- mum.

[Elllicam]

Does she have district nurse involvement? They are usually great for wounds. There are waterproof dressings but if it’s literally pouring large amounts of fluid I suspect they would just fall off. Thinking outside the box what about something like this? bnf.nice.org.uk/wound-management/wound-drainage-pouches.html If you got one with a port she could empty the bag.

[Meretricious]

I was thinking Macmillan nurses....

[Switz]

Hi

Thank you so much for your replies. She does have a district nurse and a hospice nurse but they seem to be at a bit of a loss. The district nurse has given her large round self adhesive dressings which are great for between times when the pressure has eased and it's not flooding but the she doesn't leave nearly enough. I would like to buy some for them but don't know where from can't see any on amazon!

Will mention a wound specialist nurse to them.

Due to the nature of it I don't think a port or drain would work in this instance.

Sophie

[Switz]

I did think about Tena pads!

[OldAndWornOut]

Might be worth a try, just when the leakage is bad.

[Elllicam]

Again a bit of an odd one but if it’s poking out a bit you could try the male incontinence pads that are shaped rather than Tena.

[weaselwords]

Could she tape a disposable nappy over it? Or would that be the wrong shape/size?

[gassylady]

Have they considered whether radiotherapy to the lesion might help to control the symptoms

[MegCleary]

Practice nurse, district nurse, palliative care team will have loads of types of dressings for this or drain bags etc and advice.

[MrsMozartMkII]

So long as she can not think about what it is, what about the puppy pads?

[AnnaMagnani]

I'd ask that she is seen by the Tissue Viability Nurse - my experience is that they are sometimes brilliantly helpful with ideas, and sometimes not helpful at all as they get sidetracked with wound healing which of course is not going to happen here but it is always worth trying.

I'd also make sure she has been discussed at your Palliative Care Specialist Nurse's MDT and see if they can get a Palliative Care consultant to do a home visit/your step mum to go to clinic for a specialist opinion. Your stepmum is the sort of patient I would expect to hear about and go and visit personally.

I haven't seen something quite like this before, and obviously can't advise a stranger over the internet but if I did see this I'd do my best to think of something more than tissues, even if ultimately it didn't work. She might also be offered an admission to the hospice for us to try things.

I am guessing radiotherapy isn't an option as she has already had maximal radiotherapy to the wound area but worth checking.

[flapjackfairy]

What about those incontinence sheets that go on the bed. They can be v absorbent and would be big enough to wrap all the way around her body and could be secured with micropore tape. They are plastic backed so nothing would leak through.
It must be horrible for her the poor thing. So sorry you are having such a tough time of it x

[Terryscombover]

Firstly that's a terrible situation for your step Mum and my heart goes out to her and you all.

Please ask at your local chemist to the dressing - they should be able to order them in for her. I too was thinking of a slim but ultra absorbent pad for night time.

[AndNoneForGretchenWieners]

So sorry your stepmum is dealing with this

Not the same but I had surgery on my stomach some years ago and one if the wounds wouldn't heal. Every time I stood up or moved it poured like a tall (very smelly as infected). I ended up taping the night time thick super flow sanitary pads to me so that I could move about. I had to change them regularly but they did the trick and kept my sterile dressings in place (even though they were saturated).

[AndNoneForGretchenWieners]

Tap not tall.

[ChiaraRimini]

Your poor stepmum
Just to echo what Anna said below, do keep pushing for a more specialist nurse or doctor to see her, you have to be polite but firm sometimes to get help, don't be fobbed off.

[Switz]

Thank you all for your replies ,they're really helpful. I've got the hospice nurse to come out this week and have ordered a load more dressings for her. Will also be going in to a big Boot this week to get some pads and advice.
Thank you again.

[sackrifice]

Christ on a bike, what a brave woman she is.

[palomapear]

Have you tried any of the Cancer helplines or message boards. She can't be the only person this has happened to even if your local nurses have never seen it.

[Switz]

Palomapear, yes I put this to people and nurses on cancer boards yesterday too.

We're getting more professionals in to see her. They are both of the 'we don't want to make a fuss' era so need a bit of a kindly push when it comes to asking for help.

[whattheactualfuckery]

What about her Breast Care Nurse? Has she spoken to her? Through experience of a leaking wound there are many varieties of dressings which can be prescribed. I'm the mean time, think sanitary towels, breast pads, Tena pads/sheets, flannels etc