URGENT- Anyone have info on treating ulcerated tumors?

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URGENT- Anyone have info on treating ulcerated tumors?

Postby anuka » Fri Oct 04, 2013 5:28 pm

Hi everyone,

I've been a longtime Barbara Sher fan, have worked with her and been to workshops, have been part of several success teams (including Andrea's first, I think!), but have been away from the forums for a while. I'm currently in a time-sensitive race to see whether I can dig up any information about a very specific health care issue for an elderly family friend, and it just occurred to me that I need to try a sort of wide-flung idea party, and that the forums are the best place to start. If this topic is inappropriate or posted in the wrong area, I trust that the moderators will let me know or move the topic, thank you. I considered posting in wishes and obstacles, but this isn't for myself or a career/dream, it's for a friend and an urgent healthcare issue.

Here is the very specific problem:
How to care for surface bleeding in a large ulcerated tumor in a very elderly patient. Meaning she has a large tumor that has broken through the skin, leaving her with very delicate, friable tissue that bleeds very easily.
Looking for possible options like seaweed or collagen pads, barrier liquids almost like "second skin" that can be painted on, possible treatments used for burn patients??? In my online searches so far today I've also found references to sucralfate or silver nitrate creams.

I'm not looking for treatments for the tumor, it's inoperable, she's in her late 90's, can't handle removal because it's very large, she can't handle chemo or local radiation. The problem is finding dressings or creams that might help with clotting on the surface, and/or not pull at the tissue when the dressings are changed. Otherwise, she is in danger of dying much sooner than expected from rapid blood loss. So far it does not seem that the tumor has moved into any major blood vessels, so the blood loss is from surface tissue only, but is still severe due to her age, extremely low weight and blood volume to begin with.

The major obstacle so far has been that we haven't found any oncologists or geriatric doctors who have experience with large ulcerated tumors anymore, or have even ever seen one. They just aren't that common anymore, since cancer is openly talked about and early detection is emphasized. We've spoken to perfectly capable doctors, but they all pretty much say they don't know what to do with this because it's so rare.

It wasn't always, of course. And when it is seen now, it's with people like my friend who are much older, and who hid the condition because they mistrusted or feared doctors or didn't want to face a diagnosis.

I'm wondering whether anyone might know someone who works with cancer patients in areas where there are more cases of ulcerating tumors because of little available health care, or again, a mistrust and avoidance of doctors. I'm throwing a wide net. My instinct is that suggestions will most likely come from someone with direct experience because of something very specific about their history as a health care provider.

I do have a small favor to ask, and hope you will understand. I have had some very negative reactions from people I've spoken to so far when they hear that she hid the condition. There has been an occasional tendency to criticize her for her fear, to say or imply that she brought it on herself, what did she expect, suck it up etc. I think it has come more from fear or sadness than unkindness- this is a very difficult subject, and most or all of us have had loved ones, or ourselves, affected by cancer. While I don't expect that from the generous souls here, I admit I am a little worn out with fielding those reactions, and would like to ask for empathy for her. And in the spirit of idea parties, all suggestions will be gratefully received.

I thank Barbara, Andrea and all the Sher community for the wonderful connections over these many years.
I realize this is a very specific question... but what better place to start looking for the world's most elusive answers?

Thank you and all the best,
anuka
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby Tituba » Fri Oct 04, 2013 5:32 pm

If anyone has medical links to share, please do. Any medical advice is not endorsed by this website in any way.
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby yonuh » Fri Oct 04, 2013 6:59 pm

Interesting that the only sites I can find are in the UK, but this one has some good information:
http://www.cancerresearchuk.org/cancer- ... ng-tumours

I'll keep looking.
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby yonuh » Fri Oct 04, 2013 7:09 pm

I don't know what your level of comfort is with technical or scientific articles, but there are a few out there. I did find reference to great success with something called Gold Dust in a couple of articles.
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby BarbaraSher » Sat Oct 05, 2013 12:43 am

I seem to subscribe to something (to my surprise) called Drugs.com They send out daily notices about new drugs that work or don't work or have been recalled. They review all the latest literature on studies, etc. I'm sure there's a place to ask questions. Why don't you give it a try?
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby anuka » Sat Oct 05, 2013 12:18 pm

Hi,

Thank you for your clarification and support Tituba, it's much appreciated. And thank you very much yonuh and Barbara- I think you're both right on! Looking into drug and treatment studies, academic papers/reviews seems to be a right route. I'm going to check out Drugs.com today- yeah... my 12 year old self thinks that name's hysterical. And thank you yonuh for your searches. I noticed the same thing- it seems to be the UK that has any info. on this subject, at least that I've found in my first pass web search. And that site seems to be the best so far, thank you. Interesting that this substance called Gold Dust has been suggested- I just saw something mentioning silver nitrate. I'll look into it further.

Late last night I found an academic paper online about a hormone treatment called letrozole, used effectively for a patient in her mid-80's with a similar condition. It was done in a hospital in Japan. So another next step is to see whether I can find anyone doing a letrozole study in the US. Anybody have a cousin/high school friend/old roomate doing this research?

The most urgent focus right now is on trying to control the surface bleeding, so we don't lose her that way in the near future-that's the research work for today. I'm going to explore more possible ways of finding a doctor who might have hands-on experience.

I thank you all very much for your kindness and for taking the time to throw some of your genius power into this question!

All the best,
anuka
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby skannie » Sun Oct 06, 2013 6:24 pm

Hi anuka

How awful that people are so unsympathetic to the poor woman! It’s not unusual for people to hide conditions like that, or to decide not to seek treatment. Here’s a case story of someone else who did the same.

Malignant Wounds
http://www.cfp.ca/content/58/3/272.full

And here’s a free PDF Book by a woman who had an ulcerative tumour from breast cancer, and also found it hard to get the right information about treating it. List of references at the end.

Understanding, Managing and Living With Malignant Wounds by Sherry A. Clark
http://www.bentonhospice.org/media/7785 ... t-v2.1.pdf

Some more links with information about the condition. You’ll find some names of treatment products included in them.

Management of Bleeding in Patients With Advanced Cancer
http://theoncologist.alphamedpress.org/ ... 5/561.full

Management of Malignant Fungating Wounds in Advanced Cancer
http://www.acu.edu.au/__data/assets/pdf ... rticle.pdf

The Palliative Management of Fungating Malignant Wounds
http://www.awma.com.au/publications/200 ... wounds.pdf

Part 1: Symptom Control in the Management of Fungating Wounds
(Warning! – this one includes photos)
http://www.worldwidewounds.com/2002/mar ... ounds.html
For bleeding it suggests “haemostatic surgical sponges, such as Spongostan or Oxycell, can be used as these promote rapid haemostasis and can be left in place and covered with an appropriate dressing.”

Managing Patients with Fungating Malignant Wounds
http://www.nursingtimes.net/nursing-pra ... 59.article

Managing Exudate in Malignant Fungating Wounds and Solving Problems For Patients
http://www.nursingtimes.net/nursing-pra ... 03.article

Fungating Wounds
http://www.nhsinform.co.uk/Cancer/treat ... tingwounds

Mepitel dressing was recommended in one of those papers, but I can’t remember which one. The company also has a range of other dressings. Maybe they would be a source of advice.
http://www.metromedicalonline.com/mepitelall.html
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby skannie » Sun Oct 06, 2013 6:43 pm

You might find this one interesting. It isn't about treatment, but about how the lives of carers are affected by this condition.

Caring for a Loved One with a Malignant Fungating Wound
http://epubs.surrey.ac.uk/533557/3/cari ... %20one.pdf
“The aim of this study was to explore the experiences of
carers who care for a loved one with a fungating breast wound.”
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby BarbaraSher » Thu Oct 10, 2013 11:19 am

I just saw this email sent to me (I assumed it was up here too). So sorry. Better late than never, I hope:

From Kate D.

first search I tried was "ulcerated tumors rural medicine" because urban doctors are so advanced that they don't know what used to be, but some of the rural ones do. Also, the rest of the world is more familiar with "rural" practices being different.

Then I noticed that when I typed in "ulcerated tumors" and before I typed anything else, I got several suggestions for ulcerated tumors in dogs, in cats and in mice.......

That's where you may find some non-surgery options that will help keep the thing clean and the skin in better shape......???

Best wishes and all cheers for care-givers with hearts and minds,
Kate
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby BarbaraSher » Thu Oct 10, 2013 11:21 am

Tituba wrote:If anyone has medical links to share, please do. Any medical advice is not endorsed by this website in any way.


Thanks, Tituba. I confirm.
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby skannie » Sat Oct 12, 2013 2:17 am

Then I noticed that when I typed in "ulcerated tumors" and before I typed anything else, I got several suggestions for ulcerated tumors in dogs, in cats and in mice.......
Yes, I also initially got a lot of search results related to dogs and cats. There might be some useful information there that could be applied to humans, but from a quick skim through the info I didn't immediately see any.

Then I discovered some better search terms like malignant wound, fungating tumour, malignant fungating wound . When I Googled those terms, it brought up more results for this condition in people. The treatment for people seems to be more advanced than for animals. I would imagine that most animals that got to this stage of cancer would be euthanized instead of treated, to prevent further suffering.

From my reading of the info I found, it seems that it's not such a terribly rare condition, and affects maybe 5% or more of cancer patients. It's not just a result of untreated cancer, but can also arise due to unsuccessful treatment, or where treatment was initially successful but the cancer recurred later. But since it mainly occurs in the end stages of terminal disease, probably most patients in developed countries are treated in hospices or nursing homes by nurses. That could be the reason why many doctors don't have hands-on experience.

Most of the information I found comes from nursing sources. So I suggest if anuka or anyone else needs more advice, or a demonstration of dressing techniques, they could consult the nurses at their nearest hospice, or seek a specialised cancer care or palliative care home nurse.
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Re: URGENT- Anyone have info on treating ulcerated tumors?

Postby anuka » Thu Oct 17, 2013 11:44 am

Hi everyone,

I thank you very, very much for your care and your help. Sorry for the delay in replying, we've been heads-down working on sources, doctors etc. Skannie, Barbara, Kate, thank you for taking the time to offer these amazing resources and encouragement. That's a tremendous list Skannie, thank you very much- I'm hoping to get some time to dig into them tonight, I'm sure there will be a lot there to draw on.

I'm going to be with her tomorrow and check on progress. Currently dealing w/the usual power struggles in the care facility btw nurses, assistants, admin, a doctor who, as you described Kate, has not dealt with this before, and is not very open to outside suggestions. It seems that the biggest obstacles are going to be these- politics, approvals and even getting doctors/nurses on the phone or to see you in person.

At the moment, we are pushing for them to consider the gel dressings w/silver to help stop the bleeding- thanks to Barbara and yonuh for your links, they were very helpful in finding out about, and researching, this possibility.
Still searching for the possible homone treatment.

As always, thank you for your generosity and care!

All the best,
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