Any tissue viability nurses out there with cancer experience?

[EachandEveryone]

I’m at my wits end I have a hole which is leaking lymphatic fluid furiously and it smells disgusting. It’s really knocked my confidence. No one seems to know what to do with me and my district nurses are threatening not to visit anymore but I literally can’t reach to clean it myself it’s between my legs. Has anyone seen anything like this?

Hi. I had breast cancer, and my skin split when I had radiotherapy. I had leaking lymphatic fluid that had a vile smell, and had multiple courses of antibiotics. It kept happening, and in the end I went to see a private dermatologist who diagnosed me with flexor
psoriasis, which happens in the groin and under the breasts. He gave me trimovate which cleared up the skin so that the fluid stopped leaking.
I’m not saying this is necessary the problem, and I appreciate that not everyone can go private (my dad paid), but I didn’t get anywhere with the NHS over a period of 8 months, and I’m normally an advocate of theirs

Hi OP I was a DN a for many years and I’m sorry to hear this. Why are they threatening not to visit you? Have you been seen and reviewed by the tissue viability team? I have seen a lady with a fungating vulva before - we tried mainly charcoal based dressing to help with the odour and foam dressings for the fluid. Has it been swabbed to ensure no infection?

ETA some wounds though are particularly odorous and it can be hard to get on top of the smell. They need dressing daily, even a couple of times a day of the leakage is bad.

If the district nurses aren’t experienced in dealing with that type of wound then they need to refer you to the tissue viability nurse for input. You should ask them to do this.

The dn need reporting if they're refusing to visit, are you in touch with macmillan or local hospice teams. Can a stoma bag be attached? Are they expecting you to change the dressing. Like ppl says they need to check for infection, use charcoal and pads.

I see the tvn weekly and she said to leave it and to use the extra large pads inside a nappy. They haven’t ordered them for a week now and I’m using two nappies. Changing three hourly. I don’t think it’s worth dressing as such because it’s constantly leaking I can feel the tumour behind it. I’m on immunotherapy I don’t know if it’s working. I just don’t think I can do without the every other day visits to clean it.

ive asked time and again for a colostomy bag on it. I’ve even bought them but none of them will fix one on. Honestly sometimes nurses do my head in they just can’t make decisions on their own. I am one myself!

I'm so sorry, it sounds awful for you. Have they suggested radiotherapy, is there something the doctors can help you with. Why don't the bags stay on, is there a drain that could be inserted. You are losing a lot of fluid over a day.

I know I’m drinking like mad. They just say a bag wouldn’t stay on. I think it would. Lots of info on line says to try metronidazole on the wound but they won’t entertain it.

Who won't consider the flagyl or the bag, it's not up to the disrrict nurses, are you under an oncology team, can you see the wound yourself.

I can’t see it but if I’m in the shower I can feel it. It’s over granulated so it feels like a little stump. Oncology aren’t bothered about it they are more interested in my tumour.

District nurses are too scared to attach the bag. Tvn knows about the flagyl but has never mentioned it until I bring it up. Do you know how it’s administered?

Trimovate stains clothing. I got it from my GP, who did say that. It was effective for about a week and then made everything worse. I was then prescribed Enstilar foam. It works.

ETA. I don't have your problem @EachandEveryone but I do have psoriasis.

I hope you get this resolved. x

I've only googled it, looks like you can crush the tablets and pour on, use it bag or there's a gel. Have they taken a swab or sample for infection. I can't understand why they are scared to apply a bag, what does tvn say.

Tvn said a bag would get too heavy but I don’t see how when I will be emptying it

Swabs negative

Are you seeing the palliative care team at all? I appreciate you may feel uncomfortable about seeing them, but we often deal with this kind of intractable, outside the textbooks kind of issue. As you have found Oncology can be more interested in scans and if you are fit enough to have the next round of treatment - the symptoms side they will ask palliative care to help out on.

If the wound is a deep hole you can't see the bottom of, plus with the amount of fluid leaking out of it, then unfortunately topical metronidazole is unlikely to help. It's too hard to get it where the bugs are and it just gets washed off by the fluid.

However metronidazole tablets are always worth a try at least once if you haven't already.

Best options for smell are a box of cat litter in the room, and a charcoal dressing - doesn't have to be over the wound just near it.

I hope your immunotherapy kicks in soon and the fluid starts drying up.

Can you attach a leg bag to the stoma/urostomy bag for easier emptying, your skin must be getting very sore and you could monitor the fluid loss. Great advice from pp, I hope they can help you.

Is palliative care the same as the hospice team?

Yes and no! It varies so much what teams doing the same job call themselves from area to area.

Do you have a specialist nurse (may be based in the hospice, may not be) who comes and visits you at home, isn't the district nurse, and generally focuses on any symptoms you have?

That would be the Specialist Palliative Care Nurse. They should be part of a larger multi-disciplinary team including a specialist doctor.

The dn who hasn’t seen me for ages said the tumour has come through. I’ve emailed my nurse.

Has it come through the hole now, could she offer any help or advice, I'm sorry all this is happening to you.

So sorry to hear of your update. Did the nurse tell you what your options are? Do you have a a GP with specialist training regarding end of life.

God I hope it’s not the end of my life yet. Got an appointment with my oncologist who will examine it on Wednesday

Wishing you all the very best with the oncologist and ask about treatment creams.. Sorry I didn't mean to sound so blunt regarding your diagnosis. x

All the very best for your next appointmrnt

How are you getting on @EachandEveryone?