How many of us have true skin mets? And if there are mets, how are they being treated?
Members of BreastCancer.org seem to have a higher incidence than here - or is that merely that people don’t ask about them on this forum?
Hi Phoebe
I don’t have skin mets but I know of a couple of other women on another UK forum who do…they both happen to be triple negative and are getting chemo.
I think its interesting that we don’t hear much about skin mets on UK forums beacuse yes its commoner to see them talked about on the US sites. Personally I think this is tied up with the much more rigid defintition of what constitutes ‘secondary’ breast cancer in the UK…the charities tend only to talk about lung, liver, brain, and bone.
I have a regional recurrence in my chezst wall, supra and infra clavicle nodes, which might be defined as regional mets in the US. Here in the UK I’m not really in anyone’s club (and boy is it lonely) even though my recurrence is not curable and is just being kept stable on chemo (and I’m nearly out of chemo options.)
Sorry gone off the point…but I think your question is an important one…hope there are some more replies.
best wishes
Jane
Hi Phoebe,
I have skin mets, classed as 2nd recurrence.
They have until recently been controlled with hormonals and zoladex but this is about to change as Marsden feel there has my have been progression.
Jackie
I have skin mets (also treated at Marsden) but they are seen only as a sympton, not as really causing a problem in themleves, more as a useful indciator of progress. They did go away a lot with taxotere, but afre racing back now. They are mainly over my scalp and neck, with one in my armpit. I asked on this site why they weren’t in the recurrence list, and was told they were too rare!
Susie
PS - JaneRA, I think I am am in a similar situtation to you - have supraclavicular nodes, but also more advanced sites, and just starting 3rd type of chemo next week, and it’s not curable either…
Interesting, thank you Susie.
I have IBC.
My mets are along my mastectomy scar, above and below. I am having a CT scan on Thurs with a view to going on the lapatinab trial before it closes. So indeed more chemo.
Jackie x
Hi girls
I have ibc diagnosed 3 years ago. It came back on my skin on the chest wall, had tax and radiotherapy but it seem to have returned on chest wall again. I’m on herceptin but they are going to see me in 2 weeks may have to go on chemo tablet. I was just wondering what are skin mets ? ?
They have told me it is not life threatening but I’m not so sure.
Love Mel
Ps although I have had ibc for 3 years this is my first day on this site. xxxx
They usually appear as small lumps that cluster under the skin. This New Zealand dermatological site has an excellent description: dermnetnz.org/lesions/metastasis.html.
Skin mets in themselves are not life-threatening, but they are disturbing.
I agree Phoebe that skin mets are not often immediately life threatening. Most people who die of breast cancer die when cancer overtakes a major organ. But if skin mets get out of control they can ulcerate and cause septocemia which can kill.
Jane
Hi
That is so worrying, how can you tell if they are ulcerating
love mel xx
I think you would know - like any other ulcer, they suppurate and are open sores. Nasty!
that’s quite frightening
love mel
Hi Mel,
Seems we may be travelling a similar road.
I have replied to you under your own thread today,
Love,
Jackie x
Hi Jackie
How long have you had it ?
I’m 34 years old it’s quite frightening is’nt it
Went to see onc today and he had me to sign for that trial you mention above, he is not going to put me on it yet as although it is back he seems to think the herceptin is containing it . I hope so. Been positive for 3 years and will continue to be but boy is it hard some days.
It is really nice to be able to talk to people in similar situations although I would rather have met in different circumstances. And wish that this disease did not exist.
I’m still working only 3 days as I do get tired, my boss has been marvellous but he asked me the other day will I go full time in june. I said no!!! straight away.
I’m tired after 3.
I’m new here and still learning the lingo people used, I wondered what thread meant earlier, now you have helped me understand what it means, you’re my pal for life. You may realise I can be a bit mental !!!
Love Mel
PS good luck for your scan Thursday, please stay in touch and let me know how it goes. xxxxxxxx
LOL Mel, I understand mental!!!
I’m seen at the Marsden as well as by my local onc, he actually sent me there for 2nd opinion in Nov 07.
They expalined last week that the trial is due to close shortly, hence the rush to get these scans done in time.
I was 44 when dx, thought I was young till I came on here!
I work 4 days, and yes I find that’s more than enough !! Funnily enough I’ve been asked if I will consider adding another 1/2 day next year. not sure about that yet!
I’ll be in touch re scan,
Take Care
Jackie xxx
Hi Mabel
Where r u?
Luv Mel x
Hiya Mel,
LOL here I am!!!
Been at the Brompton Hosp most of the day for MUGA scan. So tired had to have a sleep!!
Marsden have phoned and results are good, I have a healthy heart!! Thank goodness something is working properly!!
Collect tablets tomorrow and will start on Saturday. Have to take them twice a day twelve hours apart.
How you doing today?
Love
Jackie xx
Hi Jackie
I’m so glad you have a healthy heart as well as a kind one!!! I know how you feel about sleep, I’ve been so tired after working Mon, Tues, Wed - still went to darts last night, won my game yesssssssss went out on double one !!!
I’m fine, went for herceptin today, although it only takes half an hour to go through, by the time they set me up and flush my line, I’m there half the day. We have a laugh though and I’ve even been invited to one of the chemo nurses retirement do!!!
How you feeling about going on the tablets? It’s alot of tabs is’nt it, but I suppose better than than having it at the chemo units.
You said the other day Marsden said if you were on desert island, he’d still give you herceptin (I’m a bit thick) what does that mean, does it mean even though it came back in the form of skin mets he still think it’d work??
Why could’nt they just put you back on it ?
I’m so nosy!
Love Mel x
Hi everyone!
Glad to hear that you’re Muga was good, Jackie. That’s heartening news (oops, didn’t realise it was a pun till I’d written it!). The tablets you have to take twelve hours apart are probably the Capcetabine. I have to take mine (three per dose, six a day) twelve hours apart and have just taken my last dose of the day before coming on here. You get a week’s break every three weeks. Two weeks on and one week off. Let us know how you get on.
love
Sue
Hi all
Been having problems with infection (GP’s diagnosis)on mastectomy scar for last month. Saw oncologist this morning, confirmed skin mets. around mastectomy scar for second time in 12 months.
How can GP’s brush this off. I have totally lost all confidence in them. I brought forward todays visit at hospital as I am about to travel abroad for hols. tomorrow and wanted to know what I was dealing with. Holiday was meant for some much needed R & R. Now I keep thinking it could be my last so make the most of it.
Told I will be put on oral chemo. Not sure which drug yet. Has anyone got any advice, what drugs they are on and side effects. I would appreciate some info before the decision is made on which drugs I will be on.
Thanks