Hi Everyone
Ok if I join you over here. As from today i have now been diagnosed with skin and lung mets and possible spine as T4 was flagged up on the MRI. Need a bone scan. I can’t get today out of my head and keep wandering around my house then back on here. I’m just out of control at the moment.
Dee
Hi Dee, really sorry you’ve had to join us here and hope you find this forum as supportive as I do. Have you been told what treatment you’ll be having yet? Once that’s all been arranged and you’ve had the bone scan etc you may start to feel more in control, but I know that’s really hard to imagine. I have bone mets but not skin or lungs but I’m sure the ladies with relevant experience of those will be along with words of advice very shortly.
Take care
Lesley x
Hi Dee,
I,m just browsing around like i usually do i don’t post much,
but just wanted you to know i’m thinking about you, you must be in total shock right now, i don’t really know what to say to apart from you will get a lot of emotional help from the secondry ladies.
Reneexx
Hi Dee - so sorry to hear about your diagnosis - you must be in a state of shock - There are many women here who are so supportive so I know you will get lots of replies and messgaes of support - briefly , i was diagnosed as having secondaries to lymph, bones and liver in september this year , after 8 years from primary diagnosis and know what an emotional roller coaster it is - still is, if i am honest …i hope you have support and sending you love …( sorry to be brief worked today and have to be up early…and totally knackered tonight…) Jaynex
Hi DosyDee
Being told I had a secondry was something I feared more than my original diagnosis. I was horrified and terrified and convinced it was the end imminently. But I kept a low profile whilst I got used to the idea and took things softly and slowly with regards to understanding more about what it means for me and I’m curently researching further as part of that. I spent some time on here and was heavily reassured by many of the other ladies when seeing their courage and that their lives still go on and that many of them have been around a long time since their dx. I push myself to look on the bright side - if I start to slip that always helps me.
Sending you best wishes, take care
Lea XX
Hi ladies
Thanks for your quick responses. Really needed them to help me reach the end of this rollercoaster- or is it a never ending one- the latter being the most probable I think. I am in a state of shock Jayne and hopefully i’ll be able to think clearer tomorrow.
Thanks again
Dee
Hope you manage to sleep tonight, Dee. I know when I was first told of my secondaries in sept 06, I just kept wandering around and crying and not sleeping. The onc was very pessimistic with me then but I’m still here if that helps.
As Jayne said, once you know what treatment you’re having and the results of the bone scan then you can feel a bit more in control.
I had skin mets 8 weeks after my mastectomy and hadn’t started my initial rads then but the booster sessions got rid of that lot.
I’ve got secondaries in the lymph system in my lungs plus a solid tumour that wraps itself round my heart/oesophagus so rather unusual way of having lung secondaries. Mine responded well to chemo - I’m hormone negative and been on herceptin since oct 05!! Don’t know your hormonal or her2 status and whether you have options there.
I developed another skin secondary just below my right armpit around june last year which did responded initially to chemo and hoping when I switch chemos it will disappear again.
I’m one of those women that have a very aggressive type of bc so I wouldn’t recommend you read my profile or take what has happened to me as the norm for women with secondaries but does mean I have had various experiences that may be of help.
I’ve also got bone spread in T5,T6 and T7 and my left hip as well as shoulder blade and ribs and found the biphosphonates that they give very effective for pain but can take a while to get into the system to get the relief. I’ve also had radiotherapy to my bones which helped so there are lots of options.
I think I took my secondary diagnosis harder than my initial one and really didn’t think I would be doing what I’m doing now when I was first told about my secondaries.
Don’t be afraid to ask questions to us and your oncology team and don’t worry if they seem odd questions. Often at times like this, I find my brain works very randomly and end up asking all sorts of odd questions - think it must be the shock.
I’ve had so much support and info from this part of the forum. I would never have coped without all the brilliant people here. There’s lots of info I and others could tell you but I think first you need to deal with what you’ve been told and what the bone scan says and your treatment plan but ask if there’s anything you want to know.
Really hope you sleep and don’t have to wait too long for the bone scan etc
Kate
Hi Dee
I am sorry to read your news and just wanted to add that the helpliners are here for you with additional support and a ‘listening ear’ if you need one. The line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000. The following link will take you to some further information if you wish to find out more about secondary treatments and support available to you:
breastcancercare.org.uk/server/show/nav.25
Take care
Lucy
Hi Dee
Things will be feeling unreal and out of control at the moment and that is a scary place to be. As you get more information from scans and then about treatment regimes, you will start to gain more control over your life and that always made me feel less desperate.
If you don’t understand - ask, if you need help - ask, don’t accept pain, discomfort and/or the miseries - ask if anything can be done to alleviate your symptoms.
This forum, as you probably know, is the place to dump all those angry and scared feelings - there is always a sympathetic ear here.
All the best with the scan results
Feeling for you
blondie
Hi Dee
I was dx with lung mets and t4 spread on nov 07 - had one zap of radiotherapy to spine which sorted that out and am on arimedex and also bondronat (biphosphonate) for bones. So far so good and my last 2 scans showed it all being stable which is great. I work and lead a normal life, so please dont be scared you can fight this 
and continue to enjoy your life. I know it seems hard at the moment, as someone who has had 6 bc secondaries in 6 years i know how hard it is each time you get the diagnosis, but trust me it will get better and you will cope. take care xx
Dee - it sounds like you are having a perfectly normal reaction to me. I’m sorry to see you here, but the above posts indicate that there are treatments and once you know what is happening that may help. It is also important to have confidence in your medics. Most are good some less so. A good secondary breast care nurse, can give you loads of help and support through this diagnosis.
You take care, and if you’d like to, let us know how you get on.
Hi everyone
Thanks for your responses I feel so supported and understood and I’ve seen so much strength on here. You have all been through so much and this is bloody hard but you all still have that time to comfort others. Thanks. I have lots of questions to ask now I think clearer, and cant wait until they have a proper treatment plan so I can gain back a little more control.
I’m feeling ready to fight this-probably will not beat it, but I’ll give it as good as it’s giving me. When I look at my kids I think fight-so here I go.
Love Dee xx
Hi all
I feel so flippin pathetic as I keep saying I can do this and I’m going to fight it etc. Then today and yesterday I feel dreadful again and want this all to stop. I suppose this is the rollercoaster of breast cancer but if I say I’m going to fight then I least want it to last for more than a couple of days. I suppose I just have to get through each day right now and go with how I’m feeling. It is early days I know as im only a week into my secondary diagnosis and I’m having the bone scan Friday to confirm or rule out bone mets. so I have that to face at the moment plus I still feel so alone as I’ve still not told my friends and family and that’s tough.
Sorry to moan
Dee
Hi Dee, it’s such early days, you’re dealing with the shock, I felt like you for weeks and weeks after my secondaries diagnosis…Hang on in there. Belinda…x
Hi Dee,
I have tried to respond to your post a couple of times. Once due to technical hitch lost post and then I lost the plot!
I have had diagnosed sec’s 5 years in May, although I know I had them about 6 months before, the fear, anger and pain that I felt then is not a distant memory it still feels as strong today.
It is very hard to tell those you love that you have a terminal disease, but once you can tell then and get all the emotional pain out in to the open, you will feel more in control and able to get on with your treatment plan.
It really is a one day at a time situation. Ian and I decided to get married so that kept us busy for a couple of weeks as we rang family and friends to invite then we did the ‘good news bad news’ As we live in Cornwall and everyone was up north we were able to get off the phone and leave them digest the news at their own pace. With my children that was different, we had nowhere to hide and had to do the face to face which, was heart braking. As I said it will be 5 years in June since we got married. I am still here and we are enjoying our life.
Take care and good luck with all those things that have to be done. We are all here for you if we can help we will.
Love Debsxxx
Hi Dee
It is such early days for you. I think it can seem from these boards sometimes that everyone else is ‘coping’ much better than you are (well I feel like that).
You are most certainly not pathetic. As for ‘fighting’…well its another of those metaphors which some find helpful but I don’t…I know you are about to start treatment and of course you will face that best you can…you will do best you can with every step of living with cancer. There will be times when you want to curl up and say ‘Enough’ and other times when you will feel strong. Living with cancer is hard hard work and fighting is the last thing I want to do…takes too much energy!
very best wishes
Jane
I was thinking about this last night… how it feels like a roller coaster but I think I’d rather liken it to bungee jumping, ie bouncing up and down and screaming inside and getting wrenched back up. It’s a month since I found out about my brain mets and it’s getting a little easier each day. Just don’t expect too much too soon and don’t beat yourself up. No one facing secondaries could ever be pathetic it takes a huge amount of strength and energy just to get through some days.
I’m currently using soaks in baths and comedy to try and distract me and focusing on having fun wherever and whenever I can but some days you’ve just gotta roll with it until tomorrow haven’t you.
Lots of love and if you want to fight do. I certainly am.
Angie
Dear Dee and Angie
Certainly didn’t want to suggest you shouldn’t fight if you want to. Just wanting to say that if you don’t find the term useful (and some people don’t) then thats OK too.
Jane x
Sorry Jane. I hadn’t read your comment when I posted. I can understand why you might find “fighting” unhelpful as a term. Certainly not something someone should feel they have to do, just the way my head is wired I think.
Angie