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metastatic breast cancer with cutaneous mets.

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Member

Re: metastatic breast cancer with cutaneous mets.

I too have extensive skin mets. Just received 2nd dose of Halaven, hoping tbis works because its very painful. Any ideas appreciated.
Member

Re: metastatic breast cancer with cutaneous mets.

Srilata......don't panic! The oncology team haven't found what will work for you. It can take a trial or two. E/e has failed, so on to something else. Chemo? That could be capecitabine, a very common and useful chemo. You take tablets at home every day. Ses are not excessive. I am on good ol' docetaxel at the moment, just one more round, then herceptin, to see if it works for me. Things have to be tried out. I was on letrozole for 2 and a half years with no problems at all and will go back on it, or something similar but different.. Capecitabine has been suggested for me to try if herceptin doesn't work. Maybe. There is a capecitabine (also called xeloda) thread here too. If it is suggested for you then visit there. There are good tales to tell. For now you just have to wait and see what is tried next.There are threads for most things here, where ladies share their experiences and ses. they hope that people just like you will visit. You can ask anything here. 

 

When do you see your onc next? If he is part of a team then he will discuss your case with them first. my onc is part of a Multidisciplinary Team......MDT.......and does not like to say much without discussing with them first......to get more ideas and experience. They share.

 

Part of this journey is waiting, and you will get more used to it. If they get the right drug for you the mets you can see could slowly shrink. So do keep calm and go into waiting mode for now. Think up all your questions for your onc and write them down. And ASK them! Can you take someone with you? I have a good friend who takes notes and asks questions. She often hears things that I miss! and it is good to share the situation afterwards with someone else.

 

lots of love from me........mo!

Member

Re: metastatic breast cancer with cutaneous mets.

Morning Srilata

So sorry to hear you have now developed skin mets. If I remember correctly you have not been on the combo for long for it to fail.

Have they decided what chemo you are now going to be on?

Hopefully they will let you enjoy Xmas before treatment is changed.

Sending a hug.

Linda



Member

Re: metastatic breast cancer with cutaneous mets.

Hi, I am new to this thread .I had primary bc in 2014 chemo 6 cycles surgery and radiation. In 2016 it came back in my bones. Because I am er positive her negative I was on hormone treatment.everolimus exsemestane. That failed and I have now skin Mets right neck. Have to go for chemo. Can anyone help with advice about skin Mets treatment . Carolyn thanks for suggesting this thread. Pls help I am really scared. Srilata
Member

Re: metastatic breast cancer with cutaneous mets.

Bumping up thread for shrilata xx
Member

Re: metastatic breast cancer with cutaneous mets.

Daisy.........how good to hear from you! I haven't been in this thread for a while, and so it was so good to see you when I dropped in by chance. Yes, I have been wondering about dear stresshead too. The last time she was here she was looking forward to her daughter's wedding.

 

It is so good to hear about your little boy, and that he is doing well in school. Knowing what I do of his mum I can't say I'm surprised! You used the term 'foundation' year.......is that like Reception? Little anna was in Reception last year and is now in Year 1. She loves it and her reading has suddenly taken off so she loves writing little diaries. She has lots of post-it notes on the wall with little notes on them..........'those are my BLOG gramma!'..........'Well, actually, gramma, it'th inthtagram!'. I don't think it will be long before she has a phone! She loves dressing up, climbing trees (!), and hiding in little dens in the park. Basically she is a typical 6 year old (6 a few weeks ago), full of life. Your dear mum will be looking down now and smiling at your little boy. She's watching, and approving. He'll know her through you, and know she loves him.

 

I don't have particular skin problems at the moment, but I have had a progression in my liver. my onc has put me on doectaxel/herceptin/perjeta as I had one HER2 +ve biopsy at the beginning. Don't know yet if it will work for me. I'll have a scan in about 2 months and we'll see. I've had a few ses, but it hasn't been the sledgehammer I expected. Tired mainly.

 

Give your little boy a hug from me! I know it's hard not having your mum with  you as gramma, but he will always know that she loves him from afar. Give him a few extra 'gramma' hugs every now and then! Your mum will speak to him through you. Perhaps one day you could post a photo of him?

 

Take care and thanks for dropping by here. And love to stresshead if she is reading,

 

mo xxx

 

 

 

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

Hi all

Been thinking about stresshead a lot. Wondering how she is doing. Hope you are all doing ok.
RRH - how are you? How is little Anna? My boy is doing well in his foundation year at school. His nanna would've been v proud of him. It's been over a year now and my boy starting school has made me miss her even more - would've loved her to be involved.

Xx
Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Dragoncarine

Sorry you are feeling down at the moment - hope you picked up a bit from yesterday - maybe the sun shining will help a bit.

Sending you a big hug.

Nicky x

Member

Re: metastatic breast cancer with cutaneous mets.

I have a small lump on my sternum too - in fact it was thanks to that that I got my diagnosis at all, as I asked GP to remove the "sebaceous cyst" for cosmetic reasons and then it got biopsied (they do that as a matter of course apparently). Anyway even though lump has now regrown, onc keeps insisting it is just a cyst and seems unconcerned that it bothers me having a third nipple in the middle of my chest. I have asked at every appointment if we can't cut it off again - original surgeon was willing to remove it with a wider margin but onc keeps saying wait and see. Feeling a bit fed up today - most of the time I'm more positive than this but I hate this visible sign. As far as I can gather, hospital seem far more concerned about my lungs (which I suppose is understandable) however I have no symptoms from the lung mets, just pain in my bones (sternum, shoulder blade, ribs & arm although arm recently radioed so hopeful that that's improving) and this annoying spot - which is now beginning to get itchy as well as being most unsightly. It's getting so that I don't want my partner to look at my naked chest anymore which is very upsetting. Sorry rant over, back to work...

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi there Stresshead Sweetie,

You have been through so many ups and downs.... so sorry you've been kicked in the teeth again☹️ As you know doctors always have to give us their opinions-but do try and
Set that aside if you can -no one really knows how long any of us have and you are a real fighter among fighters!

How lovely your daughter is getting married -enjoy the process.... I haven't married and no children so can only imagine what it's like - do enjoy it
Lots of love, Moijan💚💚💚
Member

Re: metastatic breast cancer with cutaneous mets.

Morning Stresshead

So sorry you have given such awful news. Hope you stay OK till your daughter gets married.

Sending you a hug.
Linda
Member

Re: metastatic breast cancer with cutaneous mets.

Hello Patricia, I agree with Nicky. There should be HER2 treatments that you haven't tried, although you mention herceptin. Did you start it with docetaxel chemo? These days you start herceptin with docetaxel, and have the new perjeta as well. But the important part is the herceptin. Nicky is right that Kadcyla is also for HER2+ve. They might try that. Did you have lapatanib with the cap? That is another HER2 targeted drug. I often feel that WE need to know so much so that we can ask questions. Very hard. But do ask about these drugs. There are HER2 trials as well.

 

And perhaps you should ask about seeing a Tissue Viability Nurse. They are skin experts, across all problems. They have seen plenty of skin problems including cancer related, and so have tricks  up their sleeves! Most hospitals have one. They know the full range of useful dressings for different situations which could help with your scab problems. Do ask.

 

From what I have learnt.....not much!.......I have had 2 small mets on my chest.........skin mets in themselves are not life threatening, but can be very uncomfortable, as you have found up to now. You have the lymphodoema complication which is very unlucky. But I am sure a specialist skin nurse could help there. Don't panic yet! There are more treatments in the pipeline! Do keep in touch here and let us know about any developments.

 

Take care for now........

 

mo                   xxxxxxxxxxxxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Patricia

Although I don't have skin mets (as far as I know) I do follow the ladies on this thread who do have them and know how painful and uncomfortable they can be.

I was just going to add that I used to have one of my chemo treatments alongside a lady who had skin mets and was HER2+. She was on Kadcyla and doing very well on it. Depending on what other treatments you may have had previously (with primary or secondary) there may also be the option of Docetaxel, Herceptin and pertuzamab? Just thought I'd mention them as it doesn't sound like you have started on a different treatment yet. Again, from reading this thread, the ladies on here are very knowledgeable about dressings etc so you should get some good advice about coping with the scabs etc.

Nicky x

Member

Re: metastatic breast cancer with cutaneous mets.

Hello Ladies 

 

I was dx with skin mets to my right upper arm in June 2017 which first showed up as a few bumps which looked like nat bites so i had a biopsy that confirmed BC however within the 2 week period that they showed up to the time they put me on cap the bumps had now turned into 15 lesions which were ulcerated and ozing gunge.   On Cap they ulcerated lesions scabbed over and i hoped the cap was working and the sore mets healing up however i hit a problem as this arm is also my lympgodema arm so i have to wear a compression sleeve to keep the swelling down but everytime i put on the sleeve it pulled the scabs off.

 

3 weeks ago i noticed a red rash which was dx by my GP as Cellulitis so i was put on antibiotics which i have taken for one month however the red rash is still there/  On waking in the morning it is less noticable and gets more red and inflammed looking towards the evening.  I spoke to my Lymphodema nurse who said because i was wearing my compression sleeve up to the elbow to try and stop my hand swelling this was likely causing the antibiotic to take longer to work and i must stop wearing the sleeve completely which has resulted in my arm selling and becoming very painful

 

I went to see my oncologist last week and got a terrible shock when she said the rash that looked like Cellilitus was likely the cancer progressing so she stopped the Cap and sent me for a CT scan which i had on Saturday 2nd.    This is only 3 months of being on Cap and it has stopped working i am devastated that it has stopped working so quickly.  I am Her2 so how could this happen?

 

I am now in quite bad pain with the swelling in my lymph arm and the scabs are so sharp it feels that razor blades are pressing against my skin.   The expressions on the faces of the oncologists when they look at the skin cancer lesions is terrifying me as they look horrified yet i only have them on my right upper arm close to a recurrance cancer tumour in my axilla that is inoperable.

 

My bone scan was clear and my axilla tumour was stable in May but i am worried the skin mets must have spread internally if they have spread on the skin.

 

Please can anyone give me any advice on how to manage these skin mets on my lymphodema arm and what drug treatment am i likely to get after Cap and herceptin?

 

I have only had skin mets since June yet i feel so depressed looking at them and so debilitated as my arm swells everytime i try to go out as i cannot wear my L sleeve.  I just wanna cry as i dont know how serious skin mets are.

 

My heart goes out to all you lovely ladies living with skin mets as its so hard.  xxx 

Member

Re: metastatic breast cancer with cutaneous mets.

Lovely to hear from you stresshead. I have been worrying about you.......well, everyone has! Thank you for posting. I am sorry about the poor situation, but your daughter's wedding sounds wonderful. She will have a great day, and lots of photos with her mum! Do enjoy it all, and keep very close to all who love you. Take care for now & I hope the wedding is a day to remember!! Thinking of you,

 

mo                xxxxxxxxxxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thinking of you as well Stresshead but so sorry to hear things havent gone to plan with your treatment. Sending you strength and courage and hope that the wedding is organised as smoothly as possible - something to look forward to in afew weeks time.

Nicky xx

Member

Re: metastatic breast cancer with cutaneous mets.

Sending you lots of love stresshead. Was thinking about you. Hope the wedding planning goes well.

Xxxx
Member

Re: metastatic breast cancer with cutaneous mets.

Stress head

I have been worrying about you but hoped you were just resting with the chemo ..I thought you were on epirubicin ..did it knock your system too much?
Your daughters wedding will be something to look forward to and a focus ...
I'm here if you want to pm ..
Hugs xx
Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies, feel awful for seeminh to dessert you especially whn we have some new peopt a lot has been happebing here...not good thouugh. It seems i have nohe stage where i a too ill for trials and my mind and body arent strong enogh to cop with what little treatments thee are left. I have ben given abot 3mnoths.

My daghter has also decided she wants to get married while im still here so we have awedding to organise in a month. Lovely of her but we are in such a spin. I will try and read back to my last post and also post again but at least now yo understand the delay. Lots of love.xx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Tricia 

Yes you will find lots of lovely ladies on this site also very helpful as appear to understand what other people are going through

i am with you on the crying thing as i get like this every so often ,i do try not to but still the tears come and no stopping them .

Take care 

Renee

Member

Re: metastatic breast cancer with cutaneous mets.

Lovely ladies 

 

I forgot to add that i took the plunge and applied for a blue disabled badge as although i can walk i have been struggling increasingly to get around due to the Capp i am on and this hasent been helped by the fact i have been on chemo for one year with no break.   Some days i am tired and fatigued but other days i just cannot walk without a struggle with my breathing and tiredness.

 

However when i read the eligibility i did not think i had a chance and i was dreading the medical assessment however to my surprise i received a letter confirming that my application was accepted and i would received my blue badge within  7 days.

 

This has made me so happy as i feel i can drive and go out more as increasingly i am isolated at home as i cannot face going out due to tiredness.

 

So ladies if you havent applied for a Blue Disabled Badge and you struggle walking please apply.  I just wish i had done so sooner. xx

Member

Re: metastatic breast cancer with cutaneous mets.

Hello Jaquie and Renee and all you lovely ladies 

 

My skin mets havent got worse and the mets that were ulcerated and oozing plus have now got scabs, although i am sure many new light red bumps are appearing on the skin, But the big problem i am having is my mets are on my right arm which now has lymphodema. I have to wear a compression sleeve in order to keep the arm from swelling up but every time i put the sleeve on the scabs on 2 mets get pulled of and they bleed. Which is very distressing as i just want them all to scab and heal.

 

I have been leaving my sleeve off as much as possible but the result now is my arm is swollen and very painful.   I have tried plasters directly on the scab plus cotton wool around the scabm but not on it, to sort of build a wall that stops the scabs coming into contact with the sleeve but it hasnt worked.

 

I have read mention of a soft frame? that some ladies are using to stop their clothes touching the scabs so can anyone explain what this is and how to buy one.

 

I also relate to the mental and emotional anguish this visible form of cancer brings as i have cried many a tear looking at them but now i am trying to "love" them. I caress them and think loving thoughts about them which i know sounds crazy but it has helped me feel less anxious.  Hoping its mind over matter and i can accept these as just now being part of me as i have read they keep returning even if they disapear for a while!!!   

 

I am determined to not let my new stage 4 diagnosis affect my life more than absolutely neccesary.  I want to live and enjoy my life and i know feeling happy is a major part of this.  But i must confess i cry my eyes out for an hour or so twice a week and then i just get up and carry on.  I feel the crying helps.

 

Reading your posts and seeing how you are all living with this and this gives me enormous hope as you inspire me so much.  I was lost until i found this group. 

 

Tricia 

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Tricia
I got some good dressings from the hospital and on repeat from the gp, they were waterproof. I was also worried about the odour but after extensive quizzing of work colleague was convinced it was only me that could really smell it, I think due to a) knowing what it smelt like and b) it literally being under my nose!
Hope the healing continues, I'm now free of dressings
Jacquie
Member

Re: metastatic breast cancer with cutaneous mets.

Hi Tricia ,

just a thought ,our doctors supply the dressing plus the district nurse,but the charcoal you will have to buy unless you know someone with a barbecue and will let you have a few pieces.

i have the dressings for my breast sometimes as do have a leakage at times .

i have breast cancer ,with mets in liver and lung plus lympth nodes in abdomen.

take care .

Renee

Member

Re: metastatic breast cancer with cutaneous mets.

Mo and Renee

 

Thank you so much for your responses to my post which have really lifted me and helped to reduce my fears.  I now look forward to my visit to the local hospice on 7th August and i will let you know how i get on. I live alone and have no support so just making some friends would be fab.

 

Your so right as i would not want them to operate on my tumor and make my situation worse its just so hard having the C in your body but i should be grateful i am otherwise reasonably well and having a normal day to day life.

 

Renee i will try the charcoal as the smell is quite embarrasing to the point where i went to a dinner party of a work colleague and had to leave early as someone sat next to me and i thought they would notice the smell.  Anything that helps with the smell would be great. 

 

Tricia xx

Member

Re: metastatic breast cancer with cutaneous mets.

HI PATRICIA ,

iHAVE JUST READ YOUR POST AND BELIEVE THERE IS A DRESSING ,MADE WITH CHARCOLE THAT BLOCKS ANY NASTY SMELL FROM WOUNDS ETC,THEY ALLSO ADVISE A PIECE OF CHARCOAL IN EACH ROOM ,PLACE CAREFULLY BEHIND PICTURES ETC SO OUT OF SIGHT,WILL ELIMINATE ANY KIND OF ODOUR ,SUCH AS PAINT ,SOUR MILK ETC SO MAYBE WORTH A TRY .

JUST RUNG MY FRIEND AND THE CHARCOAL DRESSING IS NAMED,,CLINISORB.

HOPE THIS HELPS YOU.

RENEE

Member

Re: metastatic breast cancer with cutaneous mets.

Particia, Thanks for getting back here and sharing your experience. It is good to know how you are getting on, and it is also good for others to learn about this strange disease. I am off to my own ct scan in a minute so will only say a bit. You mention being referred to a hospice.........and worry they think you are about to drop off your perch! No. Hospices these days are places for people with cancers and other difficult conditions to go for support. There will be fully qualified nurses who can give treatments if needed during perhaps a day stay, or just talk and explain things. I have a new one near me and visited a few weeks ago out of interest. It is called South Bucks Hospice. There is no facility for people to stay there at all. It is purely for support visits. They offer many things including yoga and aromatherapy, but also morning or day visits on a social basis. So these days we need to think of hospices as places where we can find support and not only for our last days.

 

Surgery for secondary cancer is complicated as far as I can see. Usually the view is that once it has spread then both the spread and the tumour, if there is one, can both be treated with the cancer meds. Everything should respond. Sometimes there is a risk of simply spreading things more with surgery, but I have heard that sometimes tumours are removed if in a very confined space........I know of someone  who had the met in her sternum successfully removed. But that is quite rare. She had no mets elsewhere. Usually they seem to leave well alone and expect tumours to respond to the meds. And in general surgery is always best avoided if there is no clear good outcome. So you are at the stage of finding the best drug.......it sounds as though cap is working!

 

Well, must go and drink some more water, then off to the scan. Take care and do remember that there are some very supportive people here in the threads. Have you visited the bone threads? There are people there with no bone mets......it is a wide ranging group, and there is a lot of wise words spoken. Jokes too! Do try it..........https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/4...

 

For example Carolyn sometimes looks in here although she doesn't have skin mets, but she posts on the bone thread most days. I think it is the busiest thread! You can ask any question there.......they have lots of experience. You could ask about hospices for example.

 

Off I go! Raining here. Where did summer go?

 

mo                xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hello lovely ladies

 

Sorry it has taken me so long to update you. Well the biopsy confirmed the bumps were BC spread to the skin and it was so frightening that within one month from a few lumps appearing i had many more come up and some became ulcerated and were bleeding and painful.  Luckily they were all clustered on the top of my forearm but they look terrible and it is really distressing to look at them.

 

I was put on Cap and thank fully it appears to be working as the metts have dried up and developing scabs and the rest have just remained as red bumps so i am hoping the cap is working.

 

The scar under my right arm from my node removal which is where my recurrent tumour is located (this is 1cm and inoperable) has started to split open and discharge a foul fluid which smells the same as the mets on my skin. So i am really struggling with this horrible smell that i am finding so embarrasing that i am smothering myself with perfume every day and i can still get the smell.

 

I did try putting dressings on the mets that bled but they were just not forming scabs so now i just leave them without covering them and they are forming scabs easier

 

This is all happening on my lymphodema arm so i have problems wearing my sleeve as it sweats the mets and makes them very uncomfortable and painful. This last few days i have also noticed a rash on my arm which i hope isnt infection but as i havent got a high temperature i am guessing its the cancer.

 

I have great respect for all you lovely ladies living with skin mets as they are so frightening and its hard to cope with them.  I feel emotionally shattered as i  they are so visable and make me feel like a leper.

 

I am terrified they will spread and i wont be able to cope with them if the chemo stops working.  

 

I am living alone with no support so i have been referred to the local Hospice so i hope this is just for help and support and not because they think i am due to bump off soon.

 

My Bone scan was clear last week and my CT scan showed tumour was stable.  The tumour is very small and close to the skin but the surgeon says it is inoperabe because of its location attached to muscle and the node removal scan in my arm pit.  It just seems crazy they cant cut this small tumour out but i guess its to late now.   Do you know will they operate when you have secondaries?

Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies sorry it has taken me so long to update you. Well the biopsy confirmed the bumps were BC spread to the skin and it was so frightening that within one month from a few lumps appearing i had many more come up and some became ulcerated and were bleeding and painful.  Luckily they were all clustered on the top of my forearm but they look terrible and it is really distressing to look at them.

 

I was put on Cap and thank fully it appears to be working as the metts have dried up and developing scabs and the rest have just remained as red bumps so i am hoping the cap is working.

 

The scar under my right arm from my node removal which is where my recurrent tumour is located (this is 1cm and inoperable) has started to split open and discharge a foul fluid which smells the same as the mets on my skin. So i am really struggling with this horrible smell that i am finding so embarrasing that i am smothering myself with perfume every day and i can still get the smell.

 

I did try putting dressings on the mets that bled but they were just not forming scabs so now i just leave them without covering them and they are forming scabs easier

 

This is all happening on my lymphodema arm so i have problems wearing my sleeve as it sweats the mets and makes them very uncomfortable and painful. This last few days i have also noticed a rash on my arm which i hope isnt infection but as i havent got a high temperature i am guessing its the cancer.

 

I have great respect for all you lovely ladies living with skin mets as they are so frightening and its hard to cope with them.  I feel emotionally shattered as i  they are so visable and make me feel like a leper.

 

I am terrified they will spread and i wont be able to cope with them if the chemo stops working.  

 

I am living alone with no support so i have been referred to the local Hospice so i hope this is just for help and support and not because they think i am due to bump off soon.

 

My Bone scan was clear last week and my CT scan showed tumour was stable.  The tumour is very small and close to the skin but the surgeon says it is inoperabe because of its location attached to muscle and the node removal scan in my arm pit.  It just seems crazy they cant cut this small tumour out but i guess its to late now.   

Member

Re: metastatic breast cancer with cutaneous mets.

Daisy.........Thank you for dropping by! Yes, it was sad news about dbno. It is always such a loss........we all become friends here, sharing our difficulties. But for me.........I am still 'stable. At least for now. I live from scan to scan like everyone else! My next is in a few weeks. But I am grateful for being stable. This is a strange disease as it has so many faces.I hope progress is made soon, particularly for triple negative. I am 'lucky' being ER+ve.

 

My little Anna will be visiting soon. I have made a 'tent' out of colourful sheets to throw over the washing line. I made holes on each side for tent pegs (from poundland!), and 'doors' at each end out of an old duvet cover. It should keep her busy filling it up with dolls, cushions, blankets, etc. I hope we have dry weather! We can eat lunch in the tent!

 

Take care, Daisy, and give your little one a hug for me!

 

mo         xxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi all

RRH - I saw the post, made me feel sad for you all and DBNO family. How are you?
Stresshead how are you doing? Hope you're getting some quality time with your family.

I do check in often - just don't post each time as I don't feel I belong the same, but I do wonder how you're all getting on.

Xx
Member

Re: metastatic breast cancer with cutaneous mets.

Stresshead..........so good to hear from you! But sorry of course that the trial didn't work for you. On the other hand I have heard.....can't remember where.......that revisiting early treatments can indeed work. If it worked at the beginning then why not? It makes sense. The bc has moved on and now may be vulnerable again. Forgotton how to deal with it! Anyway, all the best with it. You have tried whatever comes up and have so much experience now. We all need to learn from people like you. So thanks for sharing. As you say, not everything is easy to hear, but honesty is wise. Daisy had some kind words for you lower down the thread. She is always thinking of the skinnies, and still misses her mum of course.

 

Anyway, take care stresshead, and we all have fingers and toes crossed for your latest treatment. All the best to all the other skinnies too!

 

mo

Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies, still not feeling 'great' but wanted to say helo and welcome to our new friends, although i wish you hadnt had to join us. I cant really add more than the other ladies have done, suffice to say that my skin mets started as a small lump in the sternum which was mistaken for a sebaceous cyst for 6 months. Other spread has started with a red rash and severe itching .  I now have extensive mets across my abdomen chest , neck and back with lots of weeping and ulceration. My primary BC was er+, her-, but my secondary is triple negative and has now spread to my bones and pleura. I have had it now for nearly 3 and half years and have gone through all the chemo options so much so that i am now revisiting the one i was given originally. I have also had electrochemotherapy. I have recently been on a trial and that failed. Add to tjat i too have got lymphoedema......dont seem to have any luck with anything at the moment.

There are loads of treatments for you to be tried with and once a plan nis in place it makes you feel much better.. I hope i havent scared you too much but just wanted to be honest..

I havnt been posting much lately but if theres anythong yo think i can help you with please post....i promise i will try and sign in more regularly.

Love to all. XX

Member

Re: metastatic breast cancer with cutaneous mets.

Daisy........Thank you for visiting us a few weeks ago. I am hoping you will drop by again and notice this! I did notice your post and always think how kind you are to remember us here. I certainly remember you and your mum, and of course your little boy. I noticed that you sent your love to dbno who was often posting here. She was so good at sharing and supporting everyone. I'm afraid she passed away just before your post. I have noticed today that Carolyn has put up a page for her on the dedications thread. It was rather sudden and unexpected.But I thought you would like to know. Carolyn hesitated understandably at first about posting on the open threads. So I also hesitated letting you know.

 

I hope you are coping well. I find I miss my mum & dad just as much now as at the beginning..........but in a strange way I have simply got used to missing them. It is no better, but I am in a new normal. I talk to them every day! My little Anna is 5 and full of beans! Do take care, Daisy.

 

mo          xxxxxxxxxxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thank you RRH
Mx
Member

Re: metastatic breast cancer with cutaneous mets.

Moijan........your ladybird spots........if they are still there and bothering you, in your mind so to speak, then show them to your onc again next time. If they are still the same after 8 months then they are probably nothing to worry about. But skin is so odd. Without your secondary dx you wouldn't give them much thought at all! If they are the same over time, then whatever they are they are 'stable'. But just show them again, and even ask for them to be biopsied for peace of mind. But whatever you do don't worry too much! when I showed my onc my little bump recently........no idea how long it has been there of course!.........he decided to 'wait and see'. It hasn't changed. So far. We are in a funny little world now, so just do the careful thing and mention it next time.

 

I am having problems with my internet connection and I realise how dependent I am on it these days. It may be my ancient stone age Vista laptop......10 years old now. I should consider a new one but I begrudge the £££.

 

Take care, and sleep tight tonight,

 

mo

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Carolyn, 

 

but you are an expert...on chocolate!  And this pain in the a r s e, you say keeps popping up? Where does it pop up then, lol?

 

anyway...you can see im tired cant you?

 

Redridinghood...im not going to worry, but about 8 months ago, I showed my onc and my GP......

a couple of spots in my umbilicus which are about the size and appearance of baby ladybirds! The onc said he suspected they would just pull off...but he didnt suggest that. Anyway, there they are.

Mx

Member

Re: metastatic breast cancer with cutaneous mets.

Denruss......welcome to the BCC forum! There are lots of people here with lots of experience so  you came to the right place. I realise that you have tried this skin thread because of your scalp, but for advice on faslodex you might do well to visit a much busier thread than this one. I have had.......perhaps still have......skin mets on my chest, but have no experience of faslodex. I also have bone mets so I visit the bone thread:

 

https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/4...

 

I think you should introduce yourself there as you have done here, and I think you might get a response that could be useful. It is a very busy and friendly thread........the busiest probably. Not everyone who visits has bone mets, and many 'bonies' have other mets. So there is a strong mix of types of breast cancer and treatments. You will be very welcome there. People drop in for friendly chatter, but also serious sharing of experience. Do give it a go. Skin mets are more rare than bone mets, so this thread can be quiet.

 

Welcome again, and looking forward to seeing you on the bone thread,

 

mo                 x

Member

Re: metastatic breast cancer with cutaneous mets.

I was first diagnosed in 2002. Had mastectomy and on tamoxifen for 5 years. In 2012 I was diagnosed with Mets in my r lung. I responded well to Arimidex and tumour shrank by approx 1/3. I was stable until further Mets were noted in my spine in 2015 and I was changed to Aroamasin and had Radiotherapy to L5 and S1 vertebrae. I then noted a small lesion on my scalp which I showed to my Gp. It was thought to be a Basal cell cancer and was only diagnosed as my breast cancer several months later when it was removed. There are now several spots on my scalp one is quite big. I am now on Faslodex and have had 5 injections. I feel no improvement and I am wondering if anyone else has had experience of Faslodex and if it takes time before you feel that it is working.
Hope someone can give me some advice.
Member

Re: metastatic breast cancer with cutaneous mets.

hi ,

thanks so much ,just reading your reply's gives me a better feeling all round ,this includes the posts from everyone as such a fantastic group of people that just make you feel at home and that your problems are theirs as well,i can tell you it helps me an awful lot just reading all the posts on site ,so once again to all you lovely ladies and i am just hanging on in until i see oncologist about this rash,it is coming out slowly but in various places ,breast,tummy, arms  and neck ,i may mention it while at my scan ,or maybe not as they are all trained for something completely different ,but will let you know.

take care 

renee

Member

Re: metastatic breast cancer with cutaneous mets.

Renee.... I see your predicament..........you are in the limbo phase just for the time being. If your spots are some sort of ordinary rash then that can be dealt with, perhaps by the onc himself, or one of the nurses. Or your GP might have a cream to try if you can see him during the week. I suppose you could tell the onc you have tried something. It sounds like it could be a rash because the new spots have popped up so suddenly! My skin mets sneaked up on me slowly. But anyway you are seeing the right person on friday, and with scan results to boot.

 

These days to get herceptin at all you have to have the chemo. Part of the contract with the drug company, so with NICE too. You don't have to have the full dose of 6 sessions but you have to give it a go. So your onc won't have been too worried to take you off chemo. The herceptin is the bit he wanted you to be on. It sounds as though it is working inside........breast, lung & liver...........so he will assess your spots on friday. It has to be said that they don't worry as much about skin mets as they do about the others inside. If the inside is controlled he will be pleased. Skin mets aren't in the organs, so not as threatening, so don't get as much attention. At the same time it is YOUR skin so ask questions, and show your concerns. It is possible he could add to your herceptin if necessary. (I know you get perjeta as well anyway.) You might ask for a biopsy of one or two spots which would confirm either way and perhaps just put your mind at rest. See what he says.

 

Take care for now. We will all be interested in the outcome of your Friday appointment. Until then just swim along. Jot down questions or things you want to talk with him about, and remember to take it with you!

 

mo                     x

Member

Re: metastatic breast cancer with cutaneous mets.

hi mo 

thanks for your reply's and are appreciated ,i am being honest here and just want to say i am not exactly up on my diagnosis or treatments,i was told i had her2 cancer with cancer also in lung ,liver and some lymph nodes in abdomen,but that is all i know ,i had chemo ,plus herceptin and perjeta for first infusion ,plus second but last five have been just herceptin and perjeta as the chemo made me really ill,yes i do see oncologist on friday after scan today,so hope to find out more then,. these what look like bites have spread onto other breast as well this morning so now wondering if it is a rash or something different ,i would go to the doc but have this ct scan so no time today,

i am worried as i did read herceptin is good for skin mets and i already have that so you can see my predicament.

my last scan showed breast lump had shrunk ,lung was same liver had improved also improvement in lymph nodes ,i was really pleased with that result but now of course beginning to wonder ,,what next?

thanks again 

renee

Member

Re: metastatic breast cancer with cutaneous mets.

Stresshead........just to say we are thinking of you. In your last post you said that if you don't post for a while you will still be thinking of us. Well, it is very mutual. I hope you are doing ok. Are you on any new treatment? I'm not expecting a reply to this........just sending hugs and best wishes. 

 

mo       xxxxxxxxxxxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Patricia............Just to say I might have confused you and renee (jazmia)! Or at least confused your skin mets! Sorry......but I hope what i have tried to say still makes some sense for both of you. You have arrived here at similar times, and have similar difficulties. I know that it is you who has had the little red 'bites' on your arm after a lump in the armpit, but no spread elsewhere. On the bone thread Renee said that she was worried about her skin........she visits the bone thread now as well despite not having bone mets.......and she also described them as being like bites.......so I got the two of you  bit mixed! I know that you have some distant spread, Renee.......most of us do. But I hope my post makes sense for you both.

 

And I know that it is you, Renee, who is seeing the onc on Friday, after a scan.We would be interested to know how it goes, if you have time.

 

Are you seeing your onc again soon, Patricia? Probably, because you say you are changing treatments. Herceptin is considered a very good treatment.

 

But Patricia, you are right........skin mets are not the end of the world, and just need to be watched and treated. You have no distant spread which is a good thing. I suspect that you will have another scan before long. We are now in a world of being checked, and checked! If anything changes we have a scan! Time goes by and we have a scan. It makes sense.

 

So, sorry for me getting in a bit of a muddle! Old age. Have you visited the bone thread Patricia? They are a friendly bunch, with lots of general advice, plus sharing and supporting. You will have a few chuckles as well! Here is the link: https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/4...

 

Give it a go. Carolyn is usually there, but she also visits the skin thread to keep an eye on us all! Our mother hen! I have bone mets so visit them every day.

 

Another hot night ahead. But at least it is summer at last. 31 forecast down here tomorrow. Sigh. Ice cubes at the ready! Goodnight,

 

mo                   x

 

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

You beautiful caring ladies 

 

Thank you so much for your replies and information which has helped me get my new dx of skin metts into some prospective and realise its not the end of the world as i though it was.

 

I now feel calm and able to carry on with a more positive mind set.

 

I am so blessed to have found you xxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Whoops a daisy ..pressed "post" too quickly (what am I like)

Hugs xxxx
Member

Re: metastatic breast cancer with cutaneous mets.

Thanks mo
That's why you are the skin expert ..I'm sure ladies reading here will find your posting very helpful.
Wish I was an expert in something ..rather than just a pain in the a r s e that pops up
Member

Re: metastatic breast cancer with cutaneous mets.

Renee.........I am so pleased that  you have found the bone thread........lovely ladies, lots of sharing and support! and laughs too!

 

I am writing this because you have said you are worried about your red spots. Carolyn has described me as a skin'expert'. I'm afraid that doesn't sound like me........I'm no expert on anything!.........but I can say that I have learnt a bit because I have had skin mets myself, and have had shared with others on this thread.

 

the thing with skin mets is that nobody really knows too much about them. You may have noticed that there is no BCC leaflet on them. They are not run-of-the-mill. They have a very varied appearance which may say as much about the 'organ' they are found in.....the skin.....as about the mets themselves. My own original skin met was almost on my mastectomy scar.........primary in 2001........and looked like an everyday pimple, very small. You would ignore it anywhere else, and I ignored it for a long time. But I mentioned it at  mammogram, and was told to show it to my GP. He also said it was an everyday spot. Innocent. But it was still there 7 months later so I lied to him so he would remove it. He did the GP surgery skin clinic. i said it bled, and was sore. In fact it wasn't sore at all, but that did the trick. He removed it, and it came back as cancer cells.

 

Hm. That threw me on the conveyor belt very quickly. About 2 nd a half years ago now. They found 2 more with ultrasound beneath the skin nearby, but not showing on the surface and they were biopsied. One was HER2+ve by the fISH test, the other not. i m ER+ve 8/8. About one year later I noticed a tiny puffy patch on the skin nearby. It came and went. But it was new. it's nothing said my onc. They don't usually present like that. About half  cm. So nothing done, but it grew  a bit bigger, but still  puffy little patch. He immediately had a biopsy done. The Consultant surgeon who did it pointed to other patches round about and said they were mets too. I disagreed with him but didn't say anything. i have had those for many, many years, and they are pale beige.....some sort of skin mole things. My onc agreed, and they haven't changed at all. I had radiotherapy on my patch.........5 sessions......at the Churchill. It seemed to work, on that patch anyway.

 

Recently I felt a teeny bump nearby, and showed the onc. He said 'we will wait and see'. Again. It could be nothing, but it is just where it is that is suspicious. Skin is funny. Normally I would ignore it. If it grows bigger....hasn't yet......we can biopsy, and have more radio. I may eventually have to try herceptin which would mean docetaxel for at least  a while because of the one HER2 result. That will always be there. The skin can of course also behave differently to the rest of one's cancer mets. You don't have any other mets and your onc will try to keep it that way.

 

I say all this to explain what i have learnt. Skin mets are not consistent in appearance, which makes diagnosing them quite tricky. They can look like lots of other everyday skin things. But oncs have their feelers out. Skin mets do not even respond to treatment consistently. My bones inside are stable, but my puffy patch appeared and developed while on the otherwise successful letrozole. Maybe it is HER2+ve........my skin recurrence that is. I know skin mets can appear as a rash, or pink skin, or bumps, pimples, anything. So your onc will be suspicious simply because the spots are near to the underarm lump you mentioned. He has 2 ways of dealing with it as I can see. He can biopsy one or two to confirm, or just change your treatment and see what happens. That sounds silly, but some years ago my dear dad had lots of odd symptoms, including weakness. His GP suspected polymyalgia rheumatica, but said the only way to be sure was to put him on the treatment.....prednisolone.....and see what happens! He was fine within hours, so that treatment continued for about one year and he got better.

 

Finally after reading on this thread I know that some skin mets can be open and sore. Mine so far have not as you can see above. I don't know why, but the skin is a funny 'organ' and can respond in different ways. I hope what I have said doesn't make you more worried than before. It shouldn't. Your onc will want to do the right thing. Ask about having a biopsy. It could give clarity either way. Let him know that you know about a newish skin treatment called electrochemotherapy. It may prove to be useful for you, although probably not now. See what he says. Your 'bites' under any other conditions would be nothing. But because of your history they will be taken seriously, even though they don't sound typical. At all. So in the end they may be nothing. Like my new tiny bump. I'd ignore it anywhere else, but because of where it is I do worry. My onc's treatment for it at the moment is 'wait and see'. No ses, no cost! But I understand where he is coming from. He can't biopsy everything, so we'll see.

 

I am sorry this has gone of forever! I can ramble. If we were face to face over a cup of tea it would be easier! Basically don't panic! Even if they prove to be mets a new treatment may do the trick. Like all mets you sometimes have to look for the treatment that works. But you have no 'distant' spread which is good. I try to be thankful that I am 'bones only' except for my skin involvement. which is strictly speaking 'local'.

 

Do take care Renee. I have posted here in case any other people with skin involvement visit. But you are a happy member of the bone thread too........a lovely group of ladies. You fell on your feet there! I knew you would.

 

But please remember I am not an expert! Your onc is the expert, but you can ask questions and you must let him know about your ideas and concerns. I think you are seeking him on the 23rd, so good luck. Do let us know.......on the bones thread!........how it went.

 

 I felt so sorry for those young soldiers yesterday at the Trooping of the Colour...........they have to go down arms at the side. But they were given water and carried off safely. Otherwise I enjoyed it all,

 

mo                        xxxx

 

 

 

 

 

 

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Patricia, and a welcome to the forum from me as well. I don't have skin mets but a lot of us check out other active threads so often post on ones that don't affect us, or haven't affected us yet. As mo has said the Bone mets thread is the busiest most of the time.

As I've said, I don't have skin mets but just wanted to suggest that you do get a biopsy done just to confirm they are actual skin mets and also double check the receptor status. That way you, and your onc,  will know exactly what you're dealing with. Receptor status can change, as mine has done, and if it has then the right treatment needs to be given. I think most skin mets are easily accessed for a biopsy? Or maybe they aren't always biopsied in case it causes more spread? Either way it's worth asking before a change in treatments. Also it may be worth having a CT scan or MRI scan done if spread has actually happened just to check on organ involvement, I know it's not something we like to know about but it could make sure, again, that the most targeted treatment is given.

Good luck and you will get good advice from the ladies on this thread about skin mets, they are the experts!

Nicky x

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Oh yes, Patricia, ....we hav a saying on here.."dont Google" its not worth it..you just get a load of useless innacurate stats,,which scare you unneccessarily.

 

you can always ring the helpline above 08088006000 or pose questions in the 'ask our nurses' section as you will get sensible advice.

 

Moijanxx