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Advice please.

40 REPLIES 40
stresshead
Member

Re: Advice please.

thanks Flo..just hope my treatment is as successful.x
Coco0896
Member

Re: Advice please.

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
Downbutnotout
Member

Re: Advice please.

Hi CW17

 

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.

Flo

x

stresshead
Member

Re: Advice please.

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

Bevlaar
Member

Re: Advice please.

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
Katherine2701
Member

Re: Advice please.

Meg, I don't know if it helps or whether mine was the same but I had what I thought was a bruise on my boob. It was cancer in the skin. Radiation therapy completely cleared it. I hope that helps a bit. It may not be the same as yours but I really hope that gives you a bit of comfort.
Katherine2701
Member

Re: Advice please.

Well said Helen and so true. The support on here is fantastic from the ladies.
2catlady
Member

Re: Advice please.

Hi,so sorry,coco xxxx we are all here for you if you need advice,support or hugs. Once your treatment plan is sorted you will feel more in control and ready to take kicking Cs butt.
Massive hugs,stay strong,Helen xxxxxxx
Lynnq
Member

Re: Advice please.

Hi Coco....all the best for the scan which I hope they arrange soon, hateful waiting for them.......but once its done they can start treatment.....they told me that if I had any eruptions they could hopefully deal with them with rads. Will be keeping my fingers crossed!

Downbutnotout
Member

Re: Advice please.

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.

Flo

X

Coco0896
Member

Re: Advice please.

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
Downbutnotout
Member

Re: Advice please.

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.

Flo

X

2catlady
Member

Re: Advice please.

Hi,Lynn,thank you I had a fantastic time. Yes,I cried a few times as I always planned to take my grandchildren there when I got them. I've made my son promise when he does grow up and have children he'll take them there and take them on Dumbo ride for me and buy them the costumes .
God I hate this disease it robs us of so much.
Huge hugs,Helen xxxxx
Lynnq
Member

Re: Advice please.

Hi Helen.....just been catching up with posts. Glad you had a good trip to Disney.....i can really empathise with your emotion in Disney......I welled up several times watching my GDs.

Good luck with the chemo...

Lynnq
Member

Re: Advice please.

Hello Coco. Before my BC was discovered I had a sore under my breast...had it for a while (months). ......can't believe now I let it go for so long.......I thought it was just my bra rubbing and kept meaning to mention it to GP....but hardly ever saw him in those days. Anyway diagnosed BC from routine mammogram and showed GP the sore. He said it was skin cancer and asked surgeon to remove it at same time as they did mastectomy.....which they did. When they did histology on it they discovered that it had breast cancer cells in it....so it was a secondary from my undiagnosed breast cancer. As I have said it was removed, there was some concern that there may be other 'eruptions' after my surgery but almost two years down the line there has not been. I went straight on to letrozole after my other secondaries in bones were discovered...they did the scan to check for other secondaries after the skin met was found to be a secondary. In a way ...looking back I am glad it was there because it made them check for secondaries which they would not have done after initial mastectomy.
Coco0896
Member

Re: Advice please.

Thanks so much for that Helen xx
2catlady
Member

Re: Advice please.

Hi,meg,great you are seeing them tomorrow. I'm just starting my first ever chemo Cap. As I had primary and mets diagnosis at same time just over a year ago.
You will feel more in control when you know what's going on and can talk to team.
Good luck and keep us informed ,we are all here to talk to,huge hugs,Helen xxxx
Coco0896
Member

Re: Advice please.

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
2catlady
Member

Re: Advice please.

Hi,meg,so sorry about finding another lump. Yes,you can get skin mets. I think there are some ladies on here that have them but not sure. You really need to get your GP to send you for biopsy to put your mind at rest. Ring bcc helpline too they will give you some advice .
Huge hugs,Helen xxxx
Coco0896
Member

Re: Advice please.

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
Macie40
Member

Re: Advice please.

Can somebody tell me why the Bleep strange!
I posted this reply before reading the latest posts and I see a few posts down there is one from Homer stating that she had her sternum removed perhaps you would like to ask her a few questions if you are thinking of going down that road Best wishes Macie x x x

Macie40
Member

Re: Advice please.

Hi **bleep** I have a soft tissue mass in sternum area also bone mets in sternum and two years ago I went to see a good surgeon at London hospital who wanted to remove sternum and mass and replace with some sort of prosthetic cage,but I felt a 12 hour operation and a long recovery at my age was just too much.
My cancer is TN so chemo was my only other option which I had Paclitaxol/epirubicin,following that I had cyber knife which was successful for about a year then more spread. At the moment I am on capecitabine with stable disease and just starting my 10th cycle.
There is a lady on here that had her sternum removed I believe she is called Homer I am not entirely sure I hope you get good results from your scan will keep fingers crossed lots of love Macie x x x

pussy
Member

Re: Advice please.

Hi
I have soft tissue mass on sternum and had chemo arimadex and now tamoxifen and I am 4 years in since being re diagnosed originally had it 17 years ago I am stable at min but have ct 4th oct so fingers crossed and I did ask if mass could be removed I a,so asked for cyber knife and proton beam but to no avail

janmac32
Member

Re: Advice please.

I saw HR and they were so nice no rush to come back, but I feel I want to. If I can't do it then at least I will know I tried. I also had pension forcast for ill health and 55 a little disappointed at the lump sum for all options after nearly 31 years in the NHS. At least know I know. I also asked the des about physio, but was told it would nt help the reducuded sensation in my leg., and to take para cetamol! Not entirely convinced that this is the right or only option. I also asked about surgery and again was told it wasn't an option as it would make little to no difference in the chance of reducing the risk of lung mets etc. however they were reassuring about my tumour markers which have risen, apparently this is common after starting treatment.
X jan
2catlady
Member

Re: Advice please.

Hi,jan,letrozole can take up to four months to work,it's a case of holding your nerve with it.
I was on the sick for a year and was finished through ill health. I received my pension as if I'd been 65 ( I'm 48) it's a personal decision ,I'm glad I did as had major progression after only a year from double whammy diagnoses . Don't let HR push you into anything .you need time to work out your options,whether that's continuing to work or not. But at least stay on sick for as long as you can as you're getting paid.
Take care,huge hugs,Helen xxxx
pam01
Member

Re: Advice please.

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

janmac32
Member

Re: Advice please.

I am her+ and I have got spinal compression, I was given dexamethasone but the insomnia and irrational thoughts got too much and I stopped it. Did you have any physio or orthopaedic input for your spine? I have had x1 lot of radiotherapy and that has eased the pain but the numbness and tingling is not really improved.
I am hoping to go back to work but not sure if I am been completely unrealistic. I have a HR meeting tomorrow I would take ill health retirement but don't want to do this unless I have to.
I really appreciate you replying, I am getting more advice and support here than from the hospital
janmac32
Member

Re: Advice please.

Thanks kimi, it 's really good to hear good news. My tumour markers have gone up and I am not sure whether it's too soon to see a response from the letrozole and dinosumab....or to be worried. I feel so much more anxious this time around. I am hoping to see the drs tomorrow so I can get further information. I am reassured that you have had surgery and that might be an option. Thanks for taking the time to reply I really appreciate it. X
Homer
Member

Re: Advice please.

hi jan,

 

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

 

kimi

pam01
Member

Re: Advice please.

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...

belinda
Member

Re: Advice please.

Oh dear yes I remember the look from some at work Jan.
You could try this look, 😳 hope you have a good day. X
2catlady
Member

Re: Advice please.

Hi,jan,you are very welcome. Glad you got a little sleep. I know what you mean about work but they do mean well and sometimes people don't know what to say.
Huge hugs,Helen xxxxxxxx
janmac32
Member

Re: Advice please.

Good morning,
Thanks for the replies yesterday, it has made such a difference...I actually slept for more than a couple of hours and no silent sobbing !
I am having bloods today and going into work which I was dreading, I hate the look everyone gives me.
Hope you all have a good day
Xox jan
Bevlaar
Member

Re: Advice please.

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 💖
janmac32
Member

Re: Advice please.

Hugs greatfully recieved, thank you x

janmac32
Member

Re: Advice please.

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

2catlady
Member

Re: Advice please.

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
Lucy_BCC
Member

Re: Advice please.

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 :

https://www.breastcancercare.org.uk/secondaries

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/88...

Take care
Lucy BCC

nicky08
Community Champion

Re: Advice please.

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

belinda
Member

Re: Advice please.

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..
janmac32
Member

Advice please.

Hi everyone, 

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:

  1. Has anyone had this mass and is it likely to shrink as the oncs have suggested?
  2. Has anyone opted for surgery, if its even possible?
  3. 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.

Thank you in advance 

jan x