metastatic breast cancer with cutaneous mets.

Quite a few of us seem to be struggling at present, I have just had 5 radiotherapy treatments to try and dry my Mets up that have ulcerated and look terrible. I was really embarrassed because of how it looks but the staff were wonderful, all in a days work for them I suppose.  Yesterday I was back at the hospital for CT scan so I am also waiting for results.  


I start EC chemo on the 19th, I have never had intravenous chemo before just oral over the past 4 years and I am dreading it,feel so anxious all the time to the point its making me feel ill.


Oh to have a normal life.


Best wishes



Janice, I know what you mean - mine were hideous too but seem to be clearing nicely on cape.  When are you starting new chemo?  I’ve had two courses of iv chemo, its tough but hopefully will be really effective for you, you have to try to think about the results rather than think about side effects etc (you might feel fine!).  Speak to your gp about anxiety, get something to help!  Its **bleep** though isn’t it, especially with skin Mets - constant visible, painful reminder ?

Hi all skin mets ladies. No posts on here for a while so hoping you are all ok.

I have had some good news at last…

went for scan results yesterrday and they hadnt been passed on to my oncologist, which tipped me over the edge before i’d even seen him. He got the report faxed over but no scan pics. He told me there was NED and that i was in remission. He was sure the lumps i can see/feel are scar tissue and is seeing me again in 3 months so it seems the docetaxol/cape worked. I asked if i would be having another scan and he said no for the cancer but would do a lung scan for the pulmonary embolism. Whilst i am really pleased the caution part of my brain is still bothered about the fact that i am now relying solely on letrozole: i am trying hard to look on the positive side and enjoy this time. Please post and report how you are all getting on. Much love.xx

Good news stress head long may it continue.


I have had 5 radiotherapy treatments to try and dry things up,fingers crossed,also had 1cycle of EC chemo last week,just coming out of the fog,hoping to feel well next week. I have had so much chemo of varying types I am sure they will either kill or cure me, hoping for the latter needless to say.


Hope everyone is coping, not that we have much choice.


Take care.



Stress head what fab news!!  Enjoy your NED time and try to forget us for a while!  


My painful breathing got worse and a ct scan showed it was fluid on my lungs and around my heart so had a couple of nights in hospital.  They’ve no idea what caused it and echo cardiograms show heart fluid is reducing slowly.  Still tired and a bit breathless but cardiologist says I must be patient as it’ll take a while to go completely.


Skin Mets sores have dried up completely and I had a proper shower for first time in months last week.  Still very red and lumpy though, no reduction in area.  Not sure how much is scar tissue, how much actual disease.  Still very tender and uncomfortable in places and looks horrible.  As its around my neck and chest I try to cover it all time with polo necks or scarves which irritates it, wish I could just wear normal clothes again!

Ladies…just wanted to ‘catch up’…you may wish to visit the superclavicle mets thread which is pretty relevant to us i think. Since i last posted a few weeks ago i have just found out that the skin mets have returned…6 weeks after finishing chemo. I knew something was wrong just two weeks after getting my NAD pet scan result. Apparently even that scan is very good for picking up problems in organs but it seems not in skin. No one seemed very keen to say there were things they could do and i am very very scared. Havent even told my husband and daughter yet…it will destroy them. Seeing my onc on Thursday but not very hopeful…in bits at the moment but t atrying to stay strong to protect the others. How cruel can this disease get…not bothered about me but the timing is awful and it will ruin my daughters life. Will post again when in a ‘better’ place. x

Dear Stresshead, I am sorry to read your post, please do call our helpliners to talk things through and get some more support

0808 800 6000 open 9-5 today

Take care
Lucy BCC

Hello stresshead, glad you got to see your Onc so quickly and that he was so positive. I sympathise with you re se’s of Eribulin (sp?), but don’t have personal experience. Glad your Onc has found something else for you to try and here’s hoping it’s just the one for you.
Re your query about Capecitabine - I am currently on a break from this but have been told by two different Oncs that I can stay on it as long as it continues to work for me. I know lots of people have been on it for years, and I believe Belinda was on it for years - I’m sure she won’t mind you asking her about it.
Glad you felt able to post regarding your Onc visit. Have you managed to tell your family yet? I’m sure they will offer wonderful support. Best wishes and hugs, Barton.x

Hi Stresshead - my current onc wouldn’t prescribe Immiquimod cream for me when I asked about it but that was partly because I was about to start chemo and she didn’t want to do both. Also, it doesn’t go very deep into the skin. However, it’s something that my GP said he prescribes for other skin conditions and at the time when I discussed it with him I was struggling to get any form of treatment for my skin mets from my former onc so my GP said he would have prescribed it for me. It’s a treatment that’s also used for another skin condition which my mother had last year - Actinic keratosis (a condition caused by too much exposure to the Sun, which is very odd as mother has always been very careful about Sun exposure).


I really feel for you and hope you can get something soon that works for you.You’ll see in an earlier post that Bumpkin has been having a really good response to Eribulin. For me, Gem Carbo chemo has been very successful but after seeing your post I’m now concerned that my NED may be short-lived. Just got that result about a week ago following my latest PET scan.


Thinking of you and the other ladies.


Sleep well.



My onc has agreed I can give Imiquimod (Aldara) a try!  She said she’d prescribe but as I’m private (insurance won’t pay for it) I’ll have to pay so I’ve asked my GP to prescribe (he’s dithering - wanted to see email from onc saying OK so I’ve just forwarded it).    


Here’s the trial link I sent my  


Mine is more lumpy/scar tissue than these photos but pretty similar now lesions/ulcers have cleared.


I will keep you posted once I hopefully get started with it.



Hi ladies…noticed no recent posts on here…is everyone using a different thread now? perhaps the bone mets one??

Just a quick update. My mets have now spread to the skin in my abdomen and the cancer is back in my reconstruction. Now on erubilin…jsut trying to cope as best i can with everything crossed. Hard to be positive when your chemo regime doesnt work…even after being told i was ned, which only lasted 2 weeks.

Mentioned immiqimod again to my onc but got nowhere.  My BCN aid she’d look into it. She told me that my onc said i could have it but he couldnt/woudlnt prescribe it. She did say itwas probably notagood idea to use it whilst on chemo as it would be uncear which was working. I’m a bit scared to just use something that hasnt ben santioned. Sorry i cant remember names but i know one lady was going to get it from her GP…did this happen and whats the result?

Please keep in touch…doesnt seem like there are too many of us…and let me know if we should just use bone mets thread.(i know theres a thread for supraclavicle node which i’ve posted on).x


Thanks for your replies ladies…we’ll just try and keep in touch as best we can.

Something i am a little concerned about at the moment is how these skin mets are actually monitored…i asked my onc the question that if they dont show up on scans how are they checked…are the ones you have measured, counted, are biopsies done regularly etc . He didnt really say but i got the impression that you just check yourself and if you see any more they biopsy?? I have been trying to talke photos but not really very effective. I have now had 2 cycles of erubilin and am concerned that the redness doesnt seem to be fading. I am aslo concerned about the cancer being back in the reconstruction tissue which apparently again is not easily picked up on scans. Makes it all worse when its all visible i think. Any words of wisdom greatly appreciated. x






Hi stresshead,

Just seen your post… I’m not sure if this is how my Hosp are monitoring my mets - still in the planning test results stage!! - but I’ve had to have medical imaging photos taken of my skin mets not pleasant… All round the mets area with tape measure strips etc… The oncologist also took several photos on her mobile phone of the site involved - obviously very ‘decent’ as you can’t Identify me…

Like I said I have no idea if this will be their monitoring device, I’ve yet to have my appt with her for all my results… Bone scan, ct scan… Tbh not yet had the scans done as all scheduled for next week…

Hope this helps, might be worth you asking if they can do similar at your Hosp?

Hope you are doing well

C xx

Hi everyone my mets don’t seem to alter had them over a year now my onc is new and seems very nice she examined my mets and one has ulcerated she asked if theyhad been photographed I said a while back she couldn’t find them in the file. The last onc and BCN explained nothing about them only saying some ladies spots had gone I found the answers from Google at least my new onc wants them photographed again. All I was told in the beginning was they have come from the tumour. Thanks to this thread I know I am not alone xx

Hello Marirose


Welcome to the skin mets thread but sorry you’re here. You’re certainly not alone. I don’t come onto the Forum much at the moment but dip in sometimes. It’s good that we have each other to discuss things with because, as you’ve found, information can be lacking.


That’s good that your mets haven’t altered much in a year. When mine started they grew rapidly. At the moment I’m in a very fortunate situation of NED after having Gem Carbo chemo.


No doubt the other ladies will be along soon to say hello.




Thankyou Flo I am afraid I am one who reads the threads but don’t always join in I seem to be following more now I feel I am luckier than most and don’t always know if I am on the right thread. I first had cancer in 1996 the tumour was under the nipple and I was facing a mastectomy I woke up to find I was still complete but one of my lymph nodes was effected after chemo and radiotherapy I thought I was rid of it. But 18years later I have a tumour on my chest wall and another in the same breast they could not operate because of were it was and it would upset the other tumour and a met in my spine Letrozole didn’t work and I was put on e/e combo even though I had no stomach troubles although I am advanced stage 4 I still consider myself lucky than some all the best Rose xxx


Orse, i know i have left a reply to your post on bone thread but am keen to keep this one going. I guess by now you are either seeing or have seen your onc…i so hope its good news. I’m still panicking wildly as i’m sure my mets are growing and spreading. I know im not TN but it seems i may as well be as no hormone therapy has seemed to help yet…just dont understand it…so i  know how you feel. Sending you loads of hugs.xx

Hi Stresshead…

I agree with you on trying to keep this thread going… Not many of us skin mets ladies…

I’ve posted my results on both of the other threads… My oncologist says she can see my mets on ct scan… She showed me my two scans and they show as thick skin… Thickness has reduced for me… Dont think this will be the same for everyone, but worth asking your onc to see if yours show as well…

I’m sorry you are having such a worrying time at the mo, have you asked your onc about your concerns? You seem to have been on Eribulin for a while, did they give you an idea how long it would take to work??

Big hugs to you and thanks for the hand holding, means a lot ??
C xxx