I have skin mets. Developed a local-regional recurrence which was diagnosed in April. After 2 surgeries to try to remove it I developed a lump, then another. They were going from nothing to a few millimetres in the space of 3 weeks and now I have lots all around my scars. Turns out the surgeries were spreading the disease. I now have 3 different morphologies of skin mets and was getting a lot of pain from the tumours.
I'm TN so started Gem Carbo chemo last Friday. The results are amazing so far. The skin rash which had developed since 1 October and had raised into lumps by the 17th has almost disappeared in the 5 days since my first dose. I haven't had any pain since the treatment.
Like you, I hoped things would work out after having a WLE with AC, then MX, FECT-T chemo and radiotherapy. I was 2 1/2 years from my primary diagnosis when I found the recurrence. Although it's not classed as SBC it's nontheless incurable. Very disappointing.
I hope you get good results from your treatment. As you point out, you're not alone, sadly, but at least we can support each other.
Very best wishes.
Hi Coco and other ladies....sorry to hear about your diagnosis.
I was diagnosed with skin mets in June after being told for 5 months tht i had a sebaceous cyst!!
My onc has classed this as local recurence in 'about three places'??.
I have been told this is incurable..surgery isnt possible because of where it is??
I was devastated...how could it come back after having FEC chemo, double mastectomy, radiotherapy. arimidex and aromasin!!!
I am about to have my 4th cycle of taxol (IV chemo) and capecitabine tablets. I have been told i can have 6 cycles plus another four of cap only, which has confused me somewhat when i read on here that ladies are taking cap indefinitely.
I too get really down and depressed as i'm sure we all do...and have done much 'silent sobbing'. I worry that if i've had all that treatment initially and it failed how is it going to work a second time. I really do try to stay positive but find it very very hard.....it really elps to read on here that, although you wouldnt wish it on anyone, you are not on your own. Best wishes.x
Sorry it wasn't good news, Coco. Good luck with the CT scan. At least you now know what you're dealing with and you can get a treatment plan to sort it out.
I'll be thinking of you. Best wishes. Let us know how you get on.
Hi Coco - sorry to hear of your latest worry regarding your skin. I have skin mets and their morphology is quite variable. They're not classed as SBC. My recurrence is classed as local-regional but, having said that, I'm as incurable as a SBC patient.
I had one lump removed to enable a diagnosis but my nurse said my surgeon knew what it was when he saw it; the skin was red on the surface and purple underneath. I now have a couple of areas which look like a red rash, which are now starting to feel lumpy; the lumps along my scars are red on the surface and where it's spreading round my back I can see small veins near the surface of my skin - I assume they're angiogenesis. My skin mets are now inoperable because the surgeries have been spreading them. I'm hoping to start Gem Carbo chemo on Friday (I'm TN). My appointment with my new oncologist is tomorrow morning. I'm hoping for good things!
Lynnq - I'm really pleased to hear that you haven't had any more skin mets since having the surgery. That's great news for you and a positive story for Coco.
Best of luck Coco.
I would say dont rush to retire........you are usually better off to take full sick leave...during which time your pension continues to accumulate...and plan retirement towards the end of that period if thats what you want.
...I still have some tingling and numbness accross my back at the level of the collapse but no symptoms in arms or legs. I need to treat my back carefully...things like carrying a heavy handbag on my shoulder can make it ache....or leaning foward over a computer screen!...but I havent needed physio ettc........I did see a spinal surgeon for an opinion...at my request....after i had been back to complain that I wasnt discussed with orthopaedics prior to radiotherapy...and that that option wasnt discussed with me......however by the stage I saw him it was clear my back was stable...and other mets had become apparent lower in my back....He has agreed to see me at any time if necessary in the future. best wishes Pamx
pleased you are feeling better today.
i was dx with bone mets 2 years ago,so dont believe the stats
& before that i was dx with mets in my sternum, i had chemo to shrink it
then an op to remove it and reconstruct my sternum
i was recently told i had multiple mets in my liver now,
but after only 4 cycles of a new chemo my latest ct showed it has cleared up my liver
and my bone mets are stable
so please dont think its all lost, i fully understand how you are feeling however i also
understand it doesnt help to panic yourself i know ive done it!
best wishes with your treatment and you know as others have said it we can help you we will
Hi Janmac.....your primary tumour sounds very similar to mine...I also had a grade 2, stage2 tumour in Dec 2005, treated with surgery, radiotherapy and chemotherapy. I also worked in the NHS. I was diagnosed with mets in T3/4/5 with T4 collapsed and in contact with spinal cord in Feb 2011. I had emergency radiotherapy and was started on exsemestane and zometa. After some progression a year later, I retired, changed treatment to capecitabine , an oral chemotherapy, and more recently changed zometa to denosumab. Been on capecitabine since feb 2012.
It took me quite a while to get my head around the idea that the plan wasnt to get rid of the tumours as fast as possible with surgery or curative radiotherapy...but treatment was palliative.....to eek things out and to prevent progression for as long as possible.
If your tumour is oestrogen positive, then usually I think anti oestrogen treatment will be tried first and sometimes this keeps things under control for many years (as Belinda says)...and hopfully this will be the case for you.Chemo will still be there for when hormone control fails...
Thank you to everyone who has replied and for your advice. It is very scary and I know I should nt have looked at the stats but I am trawling through trying to get all the information I can. The oncologist seems great he's new to my area and has time for me to ask questions etc, but its often when your left you assess what he has said and then you have further questions. I am having regular appointments so will go with another barrage of questions.
The mass is just described as a soft tissue mass behind the mediasternum this is worrying more than anything else as I tink this has the potential to spread to lungs etc.
I am thrilled to hear you are doing well this is what I needed to hear more than anything else.
Thank you sooo much xx
I have bone mets diagnosed 3 weeks and my head is spinning. My initial diagnosis was 2005 grade 2 stage 2 had the usual chemo/rads/herceptin/tamofifen. i was post menopausal so stopped tamixifen after 5 years.
I am a midwife and work in the NHS but ijust cant seem to comprehend and take in the information. I have multiple area of mets from C5 -Lumber region, but i also have a soft tissue mass 2.5cm-6.5cm behing my sternum.
I have been commenced on Dinosutab and letrozole and have x1 rads to ease my ack ache.
My questions are:
Also I feel so devestated at the bloody awful statistics that all I am doing is focusing on that. I know I need to pull myself out of this.... but I am really struggling.
I used this website last time and although never posted it was so helpful to know that i wasnt alone. I feel I need your help so much more now.
Thank you in advance