Search didn’t come up with anything recent - anyone else dealing with skin mets? Just diagnosed last week - thought it was “just” lymph nodes in my neck but then broke out in a rash; neck and top of breast.
Teej, no I have no experience of this. Is this unusual? I will be keeping an eye on any information which comes to light. Take care.
Hi Teej
Yes, I have heard of this because I have had an on-going chest rash since July and I wondered about it. So, of course, I went searching on the internet…I see my specialist next week for annual check but my GP says just infected eczema (which I have never had before).
I certainly didn’t realize you could get skin mets but it seems it is not that uncommon.
Really sorry you have another thing to have to deal with but I hope they can get you sorted and supported soon…
I hope others reply soon too.
Take care of yourself
Jenjix
Hi, i have recently been diagnosed with skin mets after being told for 5 months that it was just sebaceous cysts! Was two and a half years down the line from original breast cancer diagnosis for which i had fec chemo, (elective) bi lateral mastectomy, diep reconstruction,axillary clearance, radiotherapy and hormone therapy. Devastated when i was told it had come back and the whole family are struggling to cope. Have had two cycles of taxotere and capcitebine so far, which kocks me off my feet for a week… There seems to be little information on this so was really glad to see these threads…have felt very lonely and very scared. I believe this is treatable but not curable?? would welcome anty advice/inspiration from anyone. Thanks
Hi cw17 and welcome to the BCC forums where you will find support from your fellow users, in addition our helpliners are on hand weekdays 9-5 and Saturdays 10-2 on 0808 800 6000 with further practical and emotional support so please feel free to call
Take care
Lucy BCC
So there are a few of us then - it’s obviously not very common though. My skin mets seem to be spreading at quite a rate (neck & chest) and the trial I’m on is delayed until 23rd Sept. It’s very itchy, especially when clothes touch it - do you ladies put anything on it? I’ve tried iodine, cannabis oil (CBD - supposedly good for skin cancer so thought it was worth a try), witch hazel and aloe vera. Witch hazel is the most calming I’ve found.
Hello all…have just been reading another thread on skin mtes and they refer to TNBC…forgive my ignorance but what is this? I have just had my 3rd cycle of taxotere/capecitabine…it ‘lays me up’ for a week…nausea, no energy, neck pain, stomach gripes/diahorrea…just feel generally ill and get very low…is this normal?
i have so many questions but often dont feel like asking because i’m afraid of the answers!!
I have trouble with the fact that i was misdiagnosed for 5 months and therefore received no treatment…i wonder how, after having absolutely every treatment available last time, that this treatment is going to work?
I have read that skin mets is a local recurrence and not secondary BC and therefore not as serious? Does anyone know whether the odds are now higher that it will spread to other organs? i really try but find it hard to be confident and positive.
Thank you all for your help and advice.
Hallo cw17, I’m quite new to the forum and don’t have skin mets but maybe I can answer some of your questions. TNBC is triple negative breast cancer - that means oestrogen receptor and HER negative, perhaps someone can help with the 3rd one!
I have been on Cape for over a year on its own and still have my hair, some soreness in feet but very doable. It has worked to reduce a 2.5cm hilar lymph node to 6mm. You seem to carry on until it stops working.
There has been some debate on this forum in the past as to what defines recurrence as secondary. After my original full works treatment in 1995, I had several local recurrences in my same axilla and around my reconstruction, diagnosed in 2009, 2011 and in 2013 a CT scan showed, as well as another local lump in the same area, the hilar lymph node involvement.
At this point I was told that I was inoperable and treatment was palliative! What a shock, especially as I look and feel so well. I suppose what I was told by the lovely registrar is true, it’s been a slow descent to this stage and you just learn to live with it. Looking too far ahead isn’t helpful, nor is the secondary BC or regional recurrence name tag. Thinking of you, I’ve found the lovely ladies on this forum very reassuring and hope you do too x
Hello ladies
It’s interesting that all the people I see on the Forum who have skin mets seem to be getting treatment to try to control them. All I’ve been offered is radiotherapy above where I’ve had it previously to prevent spread upwards. But I’ve developed very fast growing skin mets since my last surgery for a local-regional recurrence and have also recently found out that I have cancer activity in my subpectoral area. I had an awful meeting with my very unpleasant onc last week and the result was that I feel he’s written me off and thinks I’m not worth throwing good money after bad. He reluctantly mentioned superficial radiotherapy to the skin mets (only after being pressed) and said he ‘could’ give me Gem Carbo (because I’d mentioned it) but he asked me, “What do I tell the auditors? We get audited you know”. I won’t bore you with the rest of what he said but his attitude was a long way from what I would expect from someone in the ‘caring’ profession.
Fortunately I have been given advice from a GP friend, and am well supported by my own lovely GP and surgeon, so I’ve now been referred elsewhere. I’m hoping I might be offered some treatment as I’m not ready to give in - I haven’t quite turned 50 yet. I have TNBC but the only knowledge I have about it and the issues over treatments is from reading posts on this Forum and from reading up on the web.
It’s lucky I have the most amazing friends to help me. And I’ve also had a lot of support, via private correspondence, with a lady on this Forum who has been a great help and picked me up when I was feeling in despair.
This Forum is a wonderful resource - even if on an odd occasion I’ve been a little over sensitive about things.
Best wishes to all.
Flo
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Thanks Helen - I’m sorry to hear you’ve been treated badly as well but I’m glad you’re being looked after now. Best of luck with your treatments.
Hugs to you to.
Flo
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Thank you all for the info…think you are right to say dont look too far ahead but this ‘living in limbo’ is very hard. I dont think anyone really has any answers…even the professionals.I just hate the effect this is all having on my family, especialy my daughter. In the last 3 years me, my mum, sister and aunty have all been diagnosed (altho still not enough evidence to warrant genetic testing!!) and now i’ve been hit again. Find this as hard psychologically as physically. Sure you all feel the same.
The mental strain of all this is the worst bit - the whole uncertainty! I feel spaced out most of the time and very detached from my family.
Just wanted to reply to you, cw17, you have plenty of family history and should be offered genetic testing if it would be helpful to you all. My granny died of BC age 57, my mum had it twice although"mildly" and I was first diagnosed at 39. On the strength of this I met a top geneticist at the Marsden and although they didn’t find BRCA 1 or 2 genes she estimated that there was a 75% of it being a gene fault.
I don’t have a daughter but it does mean that my 2 nieces will be screened early. Both my Mum and I gave blood for a large worldwide research project hoping to find more genetic links. I hope that this is not upsetting but you might feel it useful. Thinking of you x
Thanks Teej
The fear of how things are progressing while I’m not getting any treatment is awful but I have an appointment to see an onc in a different area next Wednesday.
I thought they only did genetic testing if there’s a family history. I don’t know of anyone else in my family who’s had BC but I was diagnosed at 46 with TNBC. I might mention it to my GP or the new onc. I don’t have children but would there be risk for my niece? If so, I think it would be worth paying to have the test done if necessary.
I’m keeping everything crossed that the trial works well for you.
And best wishes to all the other ladies.
Flo
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