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Skin Mets Anyone?

29 REPLIES 29
Downbutnotout
Member

Re: Skin Mets Anyone?

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

X

Teej
Member

Re: Skin Mets Anyone?

Flo I'm shocked by your doc's attitude, my oncologist is always keen to treat as aggressively as possible, as long as I agree.  I hope you get on better with your new doc.

 

CW - My onc advised I should get genetic testing done despite no family history, just because I was Triple Neg and under 50 when diagnosed.  I told my GP and he gave me the forms etc straight away (test took ages but was negative).  I live in Oxford, maybe it varies in other places?

 

Nanny - the trial I'm starting (next Tues) is MPDL3280A anti PDL-1 at Barts Hospital in London.  They've had great results so far, and as two lots of chemo haven't done much for me so far I think this may be my best bet 🙂 

stresshead
Member

Re: Skin Mets Anyone?

thank you...all 3 of us have just joined a breast/ovarian cancer study. As a family we are also convinced theres a link...anything we can do to help find it we wil.xx
Stillhere
Member

Re: Skin Mets Anyone?

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
bc-lass
Member

Re: Skin Mets Anyone?

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.
stresshead
Member

Re: Skin Mets Anyone?

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.

Downbutnotout
Member

Re: Skin Mets Anyone?

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

X

2catlady
Member

Re: Skin Mets Anyone?

Oh,flo,I can't believe how you have been treat ( well yes I can as my hospital was dreadful before I moved ). So glad you are getting your treatment and have moved. I felt the same it was hurry up and die your taking resources . Absolutely shocking the way some hospitals treat us.
I wish you all the luck in the world with your new treatment ,huge hugs,Helen xxxxxx
Downbutnotout
Member

Re: Skin Mets Anyone?

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

X

Stillhere
Member

Re: Skin Mets Anyone?

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
stresshead
Member

Re: Skin Mets Anyone?

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.

Janice
Member

Re: Skin Mets Anyone?

I have already had cap, took it for 18 months before it stopped working, then falosadex for a year which also stopped, sometimes think I am running out of options.

 

Jan

Nanny7
Member

Re: Skin Mets Anyone?

Hi ladies

Jenji - Glad you got your diagnosis and you are not joinig our little group!

Teej - What is the trial you are going on? If your rash is spreading would you not rather start treatment now?

I also have itching, particularly when I get warm. The only thing that works is a cold flannel!

Janice - Good luck with your scan and onc visit. If you feel that you treatment is not working ask for something else, mine have become a lot smaller on Cap. I know everone is different but there are lots of treatments out there to try.

 

Jenji
Member

Re: Skin Mets Anyone?

Hi again Teej

 

Thanks for reply.  Funny old week but in the end it seems I have something called Pityriasis Rosea which although longlasting and ill-making is more common in younger people.  It may last 3 months and I have done 2 already.

 

At least my feeling that it was in no way eczema was right and I am glad I went with my gut reaction and persisted.  The bloods all appeared normal although I don't have the letter yet but I rang up.  So, for now, that's it.

 

I am thinking of you all and wish you all the strength in the world...

JXx 

 

 

 

Janice
Member

Re: Skin Mets Anyone?

I have had this for over a year, started with a couple of small under skin lumps, now its more like scabs. Its on and in between my breasts, I did have mastectomy and reconstruction. Some days it seems worse than others. I have CT scans every 3 months, so far has'nt spread elsewhere, going for next one on Friday so fingers crossed.

 

Like someone says it can't be cured just treated, I am on Everolimus/Exemestane have been for 10 months, I have my doubts its working, seems to be getting worse to me, see what scan and oncologist has to say next week.

 

Jan

Teej
Member

Re: Skin Mets Anyone?

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.  

Nanny7
Member

Re: Skin Mets Anyone?

Hi again!

I am on my 4th round of Cap. I see the oncologist after 6 cycles. He said that he will discuss further treatment then. I am also on Herceptin. I have not lost my hair on Cap, but have noticed a bit extra in the hair brush. I think that Taxotere is the one that affects the hair.

We all worry about everything, some voice their worries and some just keep them to ourselves. 

nicky08
Community Champion

Re: Skin Mets Anyone?

Hi cw17
Although I don't have skin mets I do have mets in my bones and now my liver so I hope I can be of some help. I think you are definitely not alone in wondering about everything! I am just the same and through all of this time with mets ( some 6 years now) have decided that being informed is my best bet. I've learnt huge amounts from this forum and have even challenged my oncologists views when I've felt they are not right for me. After all, the opinions and experiences of all of us mets ladies is based on the combined knowledge of all of our oncologists, which can't be a bad thing.
I was on Capecitabine from Feb last year until August this year when a new met showed up in my liver, but I was an unusual case in that I needed Herceptin but couldn't have it due to poor heart function. I was therefore very grateful for the 18 months grace it gave me before starting on an iv chemo. There have been ladies on this forum on Capecitabine for over 4 years and our lovely Xeloda Queen was on it for 9 years until associated side effects caused problems. And this was before it was used as extensively as it seems to be now and other treatments being available. I had one short episode where I thought my hair was coming out on Cape but that passed and I hung onto all of it - until it eventually goes with this new chemo. I tolerated it well, after initial ups and downs and dosage tweaks plays had a few chemo breaks when the side effects, notably sore heels got the better of me.
Do keep asking away, either on this thread or any of the other secondary threads, there's always someone to help and offer support.
Take care
Nicky x

stresshead
Member

Re: Skin Mets Anyone?

Hi, thanks for that. How long have you been on CAP? My onc says i can have 6 cycles of taxotere/CAP then 4 more of CAP. When i asked my breast surgeon what happens after that i didnt really get any definitive info.suppose its just a wait and see game? Do you mind my asking..have you lost your hair with CAP? i lost all mine with fec and was told the same thing would happen: it hasnt all fallen out and it seems to be starting to grow back which is now worrying me in case the stuffs not working. Am i on my own or do others worry about absolutely everything? x

Nanny7
Member

Re: Skin Mets Anyone?

Hi cw17. Good to see someone else in a similar position to me. I was also almost 3 yrs since original diagnosis. I originally had mastectomy,node removal, fec-t chemo, radiotheraphy and Herceptin for a year.

My skin mets came up on my collar bone, I thought I had been in the sun too much as it was more of a rash. It was only when the redness spread down my chest that I saw my breast surgeon and was diagnosed. It was such a shock, but the Capecitabine seems to be working, but for how long?

Hope you begin to feel better on your treatment and it shows results.

Desi-2
Member

Re: Skin Mets Anyone?

Hi cw17 I don't have skin mets mine are lung and bone (ribs and spine) but just wanted to reply and hopefully reassure you. You are right that it is treatable but not curable but if you look on some other threads you will see there are ladies who are 10years + down the line with this disease so that has to give us all hope. Xx
Lucy_BCC
Member

Re: Skin Mets Anyone?

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

stresshead
Member

Re: Skin Mets Anyone?

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Teej
Member

Re: Skin Mets Anyone?

Hi Nanny7, good to hear the capecitabine is doing the business. I have extensive spread to lymphs too, both sides and internal mammary node but I'm waiting for a trial to start at Bart's in London. If the trial isn't successful I think it'll be Cape next.

Jenji, good to hear you're being investigated - let us know how you get on. X
Jenji
Member

Re: Skin Mets Anyone?

Hi again

 

My consultant was great and did what I feel the GP should have done 4 weeks ago.  He does not think the skin problem directly cancer based but straight away ordered full bloods and Liver Function etc just to be sure.  I felt cared for and listened to for the first time since the skin problem started.  That's all it takes to gain a bit of confidence again.  As for the results...well I suppose I will have to wait and see but I missed a withheld call on my mobile just after 5.30 and my brain started working overtime again!  

 

I hope you are coping...

Take care

Jenji

 

Nanny7
Member

Re: Skin Mets Anyone?

Hi Teej

I have recently been diagnosed with skin mets. I had never heard of them and it was quite a shock to think that a rash on my neck and chest was the cancer back again!!

I had ct and bone scans and luckily these were all clear. I have just finished my third round of Capecitabine and the rash and spots have almost gone. My oncologist was really pleased but it seems that I stay on the chemo as long as it works.

Hope yours responds well, let me know how you get on.

My oncologist told me that it is quite rare, which is why we can't find much info.

Teej
Member

Re: Skin Mets Anyone?

Hi Jenji, hope it is eczema as GP thinks. No other replies so perhaps it is quite rare? Good luck for your annual check. X
Jenji
Member

Re: Skin Mets Anyone?

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

 

busyanne
Member

Re: Skin Mets Anyone?

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.

Teej
Member

Skin Mets Anyone?

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.