Skin Mets? Advice Please

Hi Ladies
I hope you dont mind me posting on here for some advice :slight_smile:
I was dx in Jan- 39mm triple neg IDC, Grade 3, 1 node, no vascular invasion. I had mx early feb followed by 3 fec and 3 tax, last one 16th June (I havent had rads as surgeon got clear margins). Anyway, Im obviously naturally worried about recurrence given the tnbc status and so Ive been extra vigilant about signs symptoms etc…
Soon after my last chemo a rash started to develop on my surgery side- it was just redness at first but it has tracked down my boob and some bumpy lumps have since popped up. My surgeon is baffled and although he says he’s ‘not unduly worried’, he says he cant be sure what it is. I had a course of anti b’s in case it was an infection in my expander but its got worse not better. I saw my onc today for my 8wk follow up and she was quite concerned when I showed her- although she said it doesnt look like cancer, she said it could be and so I am going in for some tests tomorrow. less than 2mths out of chemo Im sure you can appreciate how anxious I am. I have a 15mth old son and he thought of what could be is very scary.
Can I ask those of you who have experience of skin mets what it looks like etc? My onc said it tends to be skin coloured but mine is quite angry looking- Im sure its not a case of one size fits all though surely? Also, if it is cancer, would it be classed as a recurrence or secondary cancer?
I am expecting an ultrasound and fna/ biopsy tomorrow- will let you know how it goes.
Thanks in advance ladies
Tina x

Anyone with skin mets offer me any advice?
Thanks x

Hi Tina

There is some talk of skin mets in another thread which you could maybe post in to direct users to your thread, it’s here:

breastcancercare.org.uk/forum/viewtopic.php?f=10&t=27192&p=444891#p444891

Please feel free to call our helpline for further support and information on 0808 800 6000, weekdays 9-5 and sat 9-2.

Take care
Lucy

Hi Gingerbud, I’m sorry to read about your worries. I have had experience of skin mets: I was diagnosed with BC in Dec '07. I had chemo first (4 x AC, 4 x Taxotere), lumpectomy, no clear margins so mx, one node affected, vascular invasion, 25 lots of radiotherapy. I thought that I was ok after all that but just 6 weeks after finishing rads a red blotch appeared where my cleavage used to be, about 1cm from the mx scar. This soon developped into skin mets - it was an angry red rash with raised nodules, it also became quite itchy. I had the oral chemo, Capecitabine. The mets vanished after 3 cycles but eventually came back again after about 6 months. Nine months ago I has a DIEP flap operation to remove the mets and rebuild my chest wall with a large flap of skin from my tummy. Touch wood, I’m feeling very well at the moment and hope to have an expander implant to give me a new breast in the near future.
Feel free to ask me ant questions. I hope you get some answers soon; I know how worrying this is!
Take care. Best wishes, LizaRad x

Hi Liza
Thanks so much for your reply. Ive got to say that your description sounds very similar to the rash I have. It started as a smallish red area and then a few small hard lumps appeared and the area is larger now. Quite scary as I am watching it spread and it is doing so quite quickly (only noticed the rash about 5wks ago and its much bigger now with about 6 small lumps). Its not itchy but the area is quite numb still after the mx if Im honest. Can I ask if your primary Dx was triple neg like mine (you never mentioned hormone treatment?)? Also was it grade 3?
My surgeon mentioned the possibility of surgery to remove the mets if need be so maybe she was referring to the surgery you had. Had you previously had reconstruction? I imagine my implant would go and all the skin removed and maybe some sort of tummy tuck recon? I am really pleased with my expander reconstruction too- I never imagined Id have a cleavage and be able to wear normal clothes so soon after my mx.
Can I ask about the cepecitabine chemo- did you lose your hair etc again? Mine is growing back now along with me lashes etc and Im devastated at the thought of losing them all again. I had fec-tax and whilst it wasnt pleasant, it was do-able. How did you find the chemo?
Im so glad to hear you are feeling so well a few years down the line :slight_smile: I have been worried that skin mets automatically means further spread but your story gives me alot of hope and I really appreciate you taking the time out to reply.
Speak soon
Tina x

Hi Gingerbud,

yes,I forgot to say that I’m triple neg, grade 2 at dx. I also forgot to mention that I had more chemo folowing the DIEP flap surgery - 6 cycles of Gemcitabine with Carboplatin ( I’m not sure how I forgot to mention that, derrr!). I did not have an immediate recon as the surgeon said it was best to wait until after the radiotherapy. I was desperate for a recon. I was hoping to have an LD flap but as it turned out I would have lost that with the DIEP surgery for the skin mets. The DIEP wasn’t a breast recon, it was just to rebuild my chest wall but like I said earlier, I hope to have an expander put under the flap.

The Capcitabine chemo was, as they say “do-able”. I did get quite tired but I was working 4 days a week then and I realise now that I was probably trying to do too much. I didn’t loose any hair with the Capcitabine, in fact it was quite thick and wavy then! I did suffer with sore feet which is common with that particular chemo. My hair thinned with the GemCarbo and it was harsh on my blood counts - on the plus side my onc says that they have had some good results with GemCarbo combo. The Macmillan website is a good source of info on the various chemos and their side effects.

I understand how scared you must be feeling. When I was diagnosed with skin mets I did lots of googling and most sites said that skin mets usually indicate further spread to another part of the body, ugh! However, scans at the time showed no further spread and my onc team say that this was a regional recurrence, which was reassuring for me. Also, with skin mets at least you can actually see if the chemo is working or not.

I’m glad that I’ve been of some help to you.

Keep the faith and speak soon. LizaRad x

Hi Tina

I have skin mets but don’t know much about the condition. My skin mets have been in the exact area where I had radiotherapy i.e. over both mastectomy scars. It is a red area, a bit like sunburn but if you look at it sideways on, it looks almost shiny. I also have an area that looks like a mass of brown mishapen moles. I did google skin mets a while back and have to say my mets don’t look anything like the pictures is saw online. I have been on Capcetibine/Lapatinib for nearly 3 months now and unfortunately the area of skin mets has increased so it clearly isn’t working and I am expecting to go onto another type of chemo when I see my onc in a couple of weeks time. Since being on Cap/lab my skin mets have itched quite a lot.

Hope the biopsy results are good.

Linda

Thanks for the replies ladies :slight_smile:
linda sorry to hear the chemo doesn’t seem to be working on your skin mets. Really hope the new type does the trick. Have u been offered surgery 4them? Imfairly certain my rash is mets + pics on the net have pretty much confirmed my fears. Lots of the stuff online suggests skin mets indicate widespread metastatic disease :frowning: so I’m pretty petrified about my ct scan results. Bcn texted today to say they’d had bone scan results + that was clear (phew!). Got concerns about my liver so I’m expecting the worst. Have u got other mets as well as skin? Are uanother triple neg lady? Seems skin mets more common with tnbc + inflammatory bc.
Liza thanks for clarifying hope you are well + thanks for giving me some hope that skin mets doesn’t always mean the beginning of the end. I’ll be back on with my results on weds- fingers crossed it’s only skin mets I have to contend with.
Take care + thanks again
tina xx

Hi Gingerbread
I have skin mets - presented as a raised red spot which looked like an acne spot but was quite sore and spread outwards. It appeared in centre of my cleavage. Wasn’t concerned at first but got checked at gps who didn’t think suspicious - soon after though found a lump in my collarbone. To cut a long story - and wait(!) - short, after scans I had secondaries in lungs, bones and liver as well as skin. I was originally diagnosed May o6 and treatment ended December 07 after a year on Herceptin. I am currently on Docetaxol and back on Herceptin. No operation mentioned for the skin mets I guess because so widespread everywhere else. Chemo seems to be working as things are shrinking. Have had 5th chemo of 6 today then will have scans. Finding chemo tiring, hard going and two nails broke off today!
Hope your worst fears aren’t confirmed. Let us know and good luck to all of us with skin mets!
x

Hi twin mummy
thanks for your reply. Sorry to hear your mets are so widespread but great newsthat the chemo seems to be working + keeping things under control. You are probably right that surgery will only be an option if there is no spread anywhere else. I’m keeping everything crossed but I’m convinced it won’t be good news. Did u have any symptoms of the lung/ liver mets? I’ve had some mild discomfort in my side + told consultant who wasn’t concerned- think they are all more concerned now though. I’m only 32 with a little boy aged 15mths + a wonderful husband who is convinced everything is going to be fine.
Will let you know when I have any more news
take care
tina x

Hi Tina
I didn’t have any symptoms for the lung mets. I did have quite itchy skin and was going to the loo quite a lot more through the night which I imagine was connected to the liver mets. I also had some pains in my ribs but having taken up an exercise regime involving star jumps, I put pains down to that and they were never so bad as to need painkillers. Also lost 20lbs but consciously as had gone to Weigh Watchers to do so.

Keeping fingers crossed that all goes well for you - how tough being so young and having and having such a young son. My kids are 9 now and they’re fantastic but I know they are getting more concerned - particularly as my fingernails are all falling out thanks to the chemo!

I find waiting for news so hard so hoping you have your results now and that it is not as you feared.
x

Hi Tina, I hope you’re ok and I’m keeping my fingers crossed for you.
xx

Hi Tina

Hope things are ok with you. To answer your questions, no I haven’t been offered surgery for the skin mets, and no I am not triple neg, I am ER+, PR+ and HER2+. I have lung mets (no symptoms yet, diagnosed a year ago) and bone mets (had them for 3 1/2 yrs).

Best wishes
Linda

Hi Ladies
Thanks so much for your posts and support during this anxious time- it means alot.
Well… I had my appointment yesterday and unfortunately, the rash is cancer as I expected :-(. Exactly the same characteristics as the tumour that was removed in Feb- grade 3 triple negative. My surgeon said it is very rare but that it can all be removed.
My bone scan was clear- just some ‘old age’ in my knee (Im only 32 lol!). The CT scan showed no obvious mets but they flagged up a few things they want to monitor. Apparently, these things are minor and probably benign but due to my history, they air on the side of caution. I have a 4mm mark on one lung and a slightly larger mark on my liver. It was the first ct scan Ive had so they have nothing to compare it to but they are not worried at this time.
Ive been this morning for an MRI but they had to abandon once they realised I have an expander implant which has a magnetic valve! So I went back to CT for a brain scan as this wasnt done last week. Bit worried as Ive had occasional mild dizziness for just under a fortnight and a funny nerve feeling in my left cheek. They think its likely to be nerve damage off the taxotere/ stress with recent events but Ive pushed for the brain scan so I know the full picture before I proceed with surgery…
So the current plan is to have surgery on 31st Aug- sounds quite radical and unpleasant but its gota be done. The surgeon will remove as much of the skin and muscle as he thinks is necessary and if he cant close me up with whats left, then he will use some skin from my tum to do so (there’s plenty there to spare lol). We’ve decided to use our private healthcare this time so I am more comfortable in hospital duting my stay- the ward I was on last time was the pits.
After surgery, I will be having radiotherapy. No plans for chemo at this time- they want to save some treatment options for later in case I need them- the options are clearly limited with the triple neg status.
I will keep you posted when I get scan results etc. Just praying it comes back normal. We were duee to go to tenerife next week and have had to cancel but off to Vfestival this weekend regardless of this weeks bad news.
Thanks again ladies
Tina xx

Hi Tina,

I’ve been wondering how your hospital appointments went. I’m sorry to hear that the rash is skin mets. My heart goes out to you. At least your surgeon says it can all be removed and it’s good that you have a date for the surgery. Good luck with the remaining scans; I know the waiting for results is awful.

On a brighter note, I hope you have a great time at Vfest! Are you going to Stafford or Chelmsford? I went to Chelmsford a few years ago when Morrisey and Paul Weller were there. I did consider going again this year as I’m a devoted Weller fan but I was put off by the cost of the tickets, plus I saw him at the Albert Hall in May.

All the best. Let us know how you are getting on.

LizaRad xx