'Fungating' tumours

I raised this issue on another thread about surgery or not in women initially diagnosed as Stage 4. I suggested this might be something to ask a doctor about if surgery were not being pursued (it usually isn’t for stage 4 people.) Belinda helpfully replied that her fungating tumour did not need dressings, was manageable and that her ocnsultant had reassured her about the future.

Unfortunately I haven’t got such reassurance and the thought of getting funagting tumours which may kill me is quite a concern at the moment. I have extensive tumours in my neckk and chest wall and am currently on vinorelbine which seems to be keeping them moderately stable (clinical impression…will have CT scan in 4 weeks). After vinorelbine I have no other serious options for treatment. The cancer I have is unusual in that as yet I have no evidence of spread to Major organs (though there is a significant query about my lungs…inflammation identied which may or may not be rads damage.)

I have talked a lot to both my oncologist and hospice nurse about how my regional tumours can kill me. The tumours may break through the skin and form horrible weeping fungating masses (There are some graphic pictures on MacMillan support…and also comment about how bad smell is one of the most difficult things to manage) If this happens to me the tumours can be dressed but surgery or radiotherpay will not be options, and if all chemos have failed it will just mean cleaning and ‘managing’ them as long as possible (could be for ‘many many months’ I am told.)

I don’t think I’ve seen a thread on this topic (apart from in discussions of women refusing surgery) and am starting it now to see if there is anyone who does have troublesome fungated tumours which need dressing, or anyone, who fears as I do that this may be the next step in disease progression. At the moment the skin over my tumours is less unsightly than it has been…but I still have areas of swelling and red/purple marks from capillaries breaking…not a pretty sight.

Thanks

Jane

I know one of my friends had a couple of small weeping skin mets that just neede dressing with a simple dressing
However, as a nurse I have seen some horrendous fungating masses where women have never sought treatment at all until someone else bought them in.
I’m concerned for me now as my skin one is beginning to growand also part of it is going in and the other part sticking out. This morning, I’ve just found another area of lumps in my central chest and as had rads to chest there , it won’t be an option either.
I will ask on thursday.
PS - got new date for ct - now mon 2nd march so much happier its been brought forward.
Hope you get some answers Jane.
Katex

Jane I thought of you today…my tumour is the primary but I understand it’s an added complication if it’s secondary tumours in neck, chest area.
A forum user of a while ago had fungating tumours on her chest and I understand she used charcoal dressings (Kate perhaps you used these on patients?) which helped with the unpleasant odour.
Just thinking as I type and wondering if the bcmets site would bring anything useful up in search?
It’s sort of odd we’ve not really discussed this here before and I have to admit I was reluctant to mention my tumour…I’ve been using this board since early 2004 and I’d never mentioned it until yesterday.
B…x Edited to add I just checked out bcmets and putting fungating tumours into search brought nothing up…surprised to say the least.

Hi
I have never heard of these fungating tumours. What on earth are they?
I have secondaries to rib, spine, hip and sternum. And also area around sternum, in soft tissue and lymph nodes.
Am I likely to get these tumours? One thing at the moment that helps me is that there is no outward sign of my illness, particularly as my hair is getting thicker all the time.
Something else to look forward to…
Ena x

Hi Ena

Fungating tumours are relatively rare in cancer but are most likely to occur in secondaries from breast cancer in the breast, chest, neck areas. (they can also occur in groin and genital area…usually from melanoma or bowel cancer.)

I am worried about them because my mets are widespread in my chest and neck area and although slow growing are basically not responding to treatments. My kind of recurrence is relatively unusual without (so far) major organ involvement. Most people with breast cancer recurrences don’t get this particular delight…but of course get other unpleasant symptoms depending on site of mets.

Belinda: yes it is interesting that so little information on the websites…I also looked on bcmets and found nothing.
I can’t recall threads on these forums either…though Kate has occasionally mentioned her worries about getting fungating tumours. I didn’t know you were living with one…albeit a well controlled primary one. I think this probably reflects the fact they are unusual, though I think posters on mets forums generally write more about treatments and side effects from treatments than they do about cancer progression symptoms.

Jane

Thanks for that Jane. There is very little information about what can happen physically to the body as cancer takes hold. I haven’t, until now, given it much thought. But the fungating tumours have got me thinking. I am not sure if I want to know- usually I like to find out as much as possible about a topic (not just cancer!) but maybe it is best to be drip-fed these bits of information.

So, Jane, it seems quite unusual in that your mets are pretty concentrated in one place. Last year, when I had secondaries diagnosed, I just had the area in and around the sternum and at the time the oncologists thought that the cancer had got into the sternum from the lymph nodes underneath it, rather than it being seconday bone cancer. So in that way, it was a similar situation to your own. However, now it it in various bones, it obviously is sec. bone cancer. Still, it makes no difference what label they put on it - the treatment is the same and the outlook not great, although my oncologist said the other day it is better to have bone mets than other types of met.
Ena x

Hi Jane,

I don’t have anything to add about fungating tumours but just a thought about treatment of your neck and chest wall tumours. I wondered if you’ve looked into cyberknife and whether you might be a suitable candidate since a clinic in London has just started treating people.

Best wishes, Gemini.

Hi Jane,

I was diagnosed stage 4 but the surgeon did operate, mastectomy, because his concern was that it would turn fungating. He said he wanted to spare me that.

Peggy

Hi gemini

Thanks for suggestion. I’ve never heard of cyberknife for regional tumours and this wasn’t mentioned when I took second opinion at Marsden so I guess not appropriate in my case. I’ve been told (both locally and at Marsden) that conventional surgery not a feasible option because I have so many areas of tumour and it wouldn’t be possible to remove it all without probably killing me.

What’s the name of the clinic in London?

Jane

Hi Jane,

The name of the clinic is The Cyberknife Centre at The London Clinic Harley Street. Maybe worth having a look at their website cyberknifecentrelondon.co.uk.

Best wishes, Gemini.

interesting this is at the Harley Street clinic - I had my rads there in 2003, its a great place, I really mean that - i felt i had a tremendous standard of care there…

Cathy

I looked up the clinic and in their description of treatment they don’t mention head and neck tumours,…which are commonly mentioned on other cyberknife sites. Also no detail about cost except it is ‘very expensive’.

I think its probably not for someone like me with tumours in multiple sites, but I will ask for an opinion when I go back to the Marsden. I’m quite laid back about new treatment options and not of the view or sentiment that I’ll do ‘anything’ or spend significant sums of money chasing a dream.

Thanks again for the information gemini.

Jane