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:
Has anyone had this mass and is it likely to shrink as the oncs have suggested?
Has anyone opted for surgery, if its even possible?
I was told if my tumour markers are coming done and things look like they are working then I wont have chemo. However I feel why wait for things to progress further why not actively reduce my risk of further spread and increase my chances of survival.
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.
Hi Jan, such early days for you still, it takes a while, I certainly found, to get your head around it all. Will try to answer some of your questions with my understanding of living with BC mets.
I was diagnosed with bone mets in 2003. I had good responses to hormonal treatments, bisposphonates, jabs to stop my periods and everything was held in check until chemo began for me in 2008. If the non chemo stuff is working, holding things stable, my Onc uses tumour markers too, it has always made sense, to me, to save the big guns until you really need them. You could always ask for a second opinion re surgery. The mass should shrink if the treatment is working or at least not grow.
Just my thoughts Jan, others may have had a more chemo from the start approach. If hormonals and other meds work they can be as effective as chemo. After first taking Arimidex in late 2004 I started it again last year and it kicked in again for a second time and so far has enabled me to have an eleven month break from chemo. I have some soft tissue mets as well and the tiny little pill has been marvellous although I suspect I will be back on chemo before Christmas but still hopeful. Take care. X…
Hi Jan
You are in a very scary place at the moment, as all of us secondary ladies know. Firstly I’d say please don’t look too closely into the stats that are quoted, many are out of date and don’t take into account the developments of new treatments. There certainly are more now for HER+ BC than when you had your primary. Sometimes the approach not to give chemo seems difficult to understand but it sounds like your BC isn’t too aggressive, being grade 2, and the treatments work on the BC in the same way even if they seem less aggressive. I can’t help you with regards the soft tissue mass, has your oncologist explained what it is? I know its difficult to take in when you’ve just had your diagnosis and it may be useful to write down any questions you do have for your next appointment. That said, the treatment will be treating your bones and the soft tissue at the same time so there wouldn’t be a different treatment for a different secondary, if that makes sense. Tumour markers, when used, are a good indication that the treatment is working.
Once you start treatment I think you will find, like all of us, that it becomes easier to cope with your diagnosis as you feel something is being done. All of us on the secondaries section have gone through that shock and anxiety that you are experiencing now so please do keep in touch with us and get as much support as you need as well as asking any other questions you may have. There is a very support, and long (!) thread called Bone mets please join in which many of us post on whether we have bone mets or not, plus many inspirational stories on ere and on other threads. All of see I hope will help you. I must admit when I had my secondary (bone) diagnosis over 6 years ago I felt just as you do now and learnt not to read any scary stats etc on the internet which is what lead me to this supportive website in the first place. I’m still here and still getting support!
Wishing you luck with your treatments
Nicky xx
Hi jan and welcome to the BCC forums, along with the support you already have here our helpliners are on hand with further practical and emotional support for you on 0808 800 6000, lines are open weekdays 9-5 and Sat 10-2 so please feel free to call to talk any concerns over
You will find lots of information and further support ideas via the BCC secondary information pages here and also here’s the link to the bone mets thread which Nicky has kindly mentioned :
Hi,jan,so sorry you are joining us but as the other ladies have said we all understand what you are going through. We are a very friendly bunch so please feel free to ask us anything as some ladies like Belinda and dawn have 11+ years of living wIth SBC. As our Nicky has said we tend to hang out on the bone mets thread regardless of mets mine are bone ,liver and lungs.
We even have a laugh on there too. You will come to terms with everything but it does take time and we all have down days which is only natural. So please feel free to chat,rant,scream or have a laugh( you will,I promise) with a fantastic bunch of brave ladies who have got me through this year.
Sending you massive hugs( we are great at hugs too) Helen xxxxxxx
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.
Hi jan…just wanted to welcome you and give you a hug too ((( )))
I cant really advise on bone mets as i have lung mets dx in may. But like you i was very scared and cried almost constantly for 2 weeks.
But the ladies are right. It gets easier when you start treatment. …and your Onc will know exactly the right treatment for you whether it’s chemo or hormonal.
Ive been on oral chemo since july.
Dont go reading the stats…theyre based on the last 10 years so I’m told not current day.
Stay strong and you’ll cope fine I’m sure. We’re all here to support you.
Love bev xxx ?
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…
I have had SBC since August 2013 and have recently found another lump in my primary breast but this also has a dark area on the skin so GP made a comment ? Skin metastes is this a possibility, I didn’t think you could get this as a SBC the lump doesn’t move and is definitely attached and slightly indented. Could really value some advice if any one has any idea. Thanks Meg x
Hi Helen yes am seeing Breast team again tomorrow, managed to get an apt very quickly just trying to get an idea of what will happen if it is cancer, have never had any chemo yet or anything xx
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.
Hi went to see Breast Surgeon and lump is cancer again in original breast. Now waiting for CT scan to see if it’s spreading elsewhere and then treatment plan to be decided, don’t know if it will be Rads or chemo and guess a change to hormone treatment all up in the air at the moment xx
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.
So sorry coco to hear your news but you know we’re all here to help if we can…stay strong. There’ll be something to treat it you can be sure of that!
Love and hugz…bev xxx
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.
Hi Ladies, thanks so much for the support you have given me, am still waiting for CT scan date and will let you know how things develop. Hope you are all ok Meg xx