Very Anxious

Dear All,
I don’t often post, but read and keep up to date with goings on. Selfishly, I am now in need and hope you don’t mind me using you.
I have bone mets in spine, diagnosed in November 2009. (Original diagnosis in 2004). There has been some ‘progression’ by a couple of millimetres in 6 months - is this a little or a lot? Anyway, got to have further CT on July 5th (my birthday!) to see if there is further spread and get results on July 9th. I’m really up and down about all of this. I know that I will have to have Herceptin as only just found out I am Her 2 positive, but might have to have chemo as well, depending on CT.
I am scared.
I am also trying to look forward to July 24th, when I will be getting married on a boat, on a lake in the USA, but there is this bloody great big black cloud hanging over me. We have decided we will go anyway, as a couple of weeks will not make that much difference in the grand scheme of things - but I am oh so frightened.
You are all so good here. Just a few uplifting words to keep my spirits up would be good. It has worked before.
Isobel

Hi Isobel I am really hoping I can lift your spirits - you have some very exciting things happening and the last thing you want is that big black cloud hanging over you.

My story is a bit too long to go into great detail here but original dx was in 1990, lots of things in between that and secondary dx in 2002. But my 2ndaries were very extensive bone mets. From dx in Dec02 to a further bone scan in March03 it continued progressing despite my being on bisphosphonates (pamidronate). I hope you are already on bisphos. There are several ‘varieties’ but if not please ask your oncologist why not. When they did more tests in 2002 they also found I was her2+++ so I started on herceptin in Jan 03. Since that time my bone mets have been completely stable and I have no side effects from the herceptin. Val (ScottishLass) & Marilf also have had bone mets for many years but I think Val is away just now. I am sure others will be adding to your thread as well. I do hope your CT scan comes back o.k. but that I know is so hard waiting to find out. Everything crossed for you that your wedding can go ahead as planned - it all sounds very romantic and exciting :). If you want to ask any more please do - or pm me if you prefer.

Dawn
xx

Thank you Dawn, my spirits have lifted somewhat. I always find though, that I’m at my worst first thing in the morning, then as the day goes by, I seem to get better.
I am on oral Bisphosphonates and have been since Septamber 09, when they thought I just had Osteoporosis…if only! Diagnosis only came after I had been going backwards and forward to one of my GPs, with clear neurological signs & symptoms, put down to being too sedentary, which I was not. I was found to have spinal cord compression, caused by a fractured vertebra, caused by bone mets. I had to have an operation to stabilize my spine and now have metal rods in my back. Hope I don’t set the airport thingy off!
I just want to get the CT and results out of the way, and a plan in place, whatever that might be and get on with my life.
You know, although I had my mastectomy in 2004, they never tested for Her2. When I think of the years I have missed of not being on Herceptin, it makes me despair. Things might have turned out differently…or maybe not. Who knows.
Well, I’ve prattled on enough. It’s nice to be able to ‘talk’ though.
Isobel

Hi again isobel, I know what you mean about wishing you had been on herceptin back in 04. I just wish it had been around a lot earlier. With my dx in 1990 it is fairly certain that I would have been her2 positive from the start. I have had so many recurrences/new tumours that I don’t think would have happened had herceptin been around. When all chemos were failing they suddenly realised no one had checked my her2 status so went back to the tissue from 2000 surgery. I was having lot of trouble with lymph nodes around neck & chest area and the effect of going on herceptin was almost instant. Still I am thankful that it does exist and has clearly given me many more years. I would say to anyone reading if your her2 status isn’t know then ask if it has been checked.

Dawn
xx

Hi Isobel and Dawn, I too was diagnosed in 04 and not tested for herceptin status. I asked for a test (in 06 I think) and apparently it came back negative, but then I had a recurrence in my pectoral muscle lymph nodes in 08 which needed more surgery chemo and rads, and luckily they tested again for herceptin and it was positive! My onc was very surprised and said it was lucky they’d tested again. So i would urge everyone to make sure that they are tested again if they have a recurrence; things can change - or may be missed! I’m just hoping it’s done it for me - fingers permanently crossed (and also for you too Isobel) love, Mo

The same with me. I was diagnosed in 2000 and not tested for Her2 status.

When I was diagnosed with secondaries, eight years later, I asked for my status to be tested from original tumour pathology.

My Onc said that she was 90% certain it would not be positive because of the gap. Anyway came back as Her +++ !!

Julie x

Hello Ladies,

I have been reading your posts with interest. I was dx with extensive bone mets in April,I am just on Tamoxofen and Zometa every three weeks for my bones, my original dx was in 2005,I don’t know if I was ever tested for Her 2,and I didn’t realise that things could change!! I will be asking my onc about it when I see him in July!

Isobel I know how frightening it is,and the waiting is awful,hope the news is good when you get your scans,and the black cloud will be lifted,your wedding plans sound absolutely fab!Thinking of you and sending lots of positive thoughts.

Maryxx

It is annoying to know that Herceptin has been around for several years, yet many of us were never tested. I think it was because many PCT’s refused to fund it on grounds of cost, until the NICE guidelines stipulated that it was to be used in appropriate cases.
Mary, thank you for the positive thoughts. I need them.
Isobel

Hi Isobel,

Hope you are coping okay, just wanted to say thinking of you,and still sending good vibes!

Take care of yourself,love Maryxx

Hello Isobel

This is my very first post as I have been too frightened to even log in so the fact that you have managed to put down your fears shows me that you have a greater courage and strength than me.

I too have boney mets and am starting radiotherapy again on friday (original dx Sept 2005) after being told Zoladex and Femara are no longer working on the skull and the disease is now in my spine. My whole brain feels like its full of the blackest of black but I am dragging this diseased body around Arley Hall on sunday in a Race for Life - well, my girlfriends will drag me!

I wish you rainbows and sunshine and peace on your wedding day - this tough job we have had thrust on us is easier with a partner to share the load.

Guess I may not have calmed your fears at all but I am walking your walk and know how scarey it is - and there is nothing wrong with that or we wouldn’t go on roller-coasters would we?

Hi Dilli,

So glad you have logged in, the ladies on the forums are so supportive,and encouraging, and of course we know exactly what you are going through. It is very scary, I too have mets in my skull,spine ribs and leg, so quite extensive. I was dx about two months ago [original 2005] I was beside myself with fear,but found talking to these ladies calmed me. I have been put on Tamoxifen and also having Zometa every three weeks for my bones, I haven’felt the benefit yet!!

Well done you for doing the Race for life.hope it’s not too hot,my nephew’s girlfriend is also doing one in Chelmsford. I really admire you, I don’t think I would have the energy!

Isobel hope you are okay,not long before you have your scan, let’s hope that the rsults will be good, not a nice way to spend a birthday though!

Thinking of you both, sending lots of love,

Maryxxx

Thanks for the kind words and I have promised myself that I will summon up the courage to look into these pages - it’s just that I am frightened of not being able to handle things I don’t want to know - you know, being sentenced by a sentence.
All my family and friends think I am so brave and fighting a battle but I’m not really - just helping husband, daughter, son and mother come to terms with what is going on.
I am not too au fait with the names of all the drugs but have come to the conclusion that it is my oncologist who is doing the ‘battling’ for me by trying to keep on top of things. I know I am quite lucky to have such a good consultant who is capable and alert.
Onwards and upwards.

Hi everyone this is my first post as I have only just been diagnosed with spine mets 2 weeks ago. I will post a bit about myself later but want to thank you all so much. I was thinking I would be gone within 3 months until I found your site and after reading all your posts you have given me a great deal of hope to see a few more years at least.

I was inspired to post when I saw Dili was doing Race for Life at Arley Hall. Thats only about 5 miles from me, when is it Dilli I will try to get along to cheer you on. Im in Northwich so guessing your not too far away.

Got a CT spine biop on Friday, just want that out of the way and get on some treatment so I can feel I am doing something towards slowing things down.

Many people will be reading your posts without ever replying but your views will be giving them strength too so if posting helps you remember your helping hidden others too, cheers x

Hello AnnB,

Welcome to the BCC discussion forums, there’s lots of good support here from the well informed users of this site, who I am sure will be along shortly to support you through this.

In the meantime I have put for you below some links to BCC’s publications which you may find helpful.

Secondary Resource pack:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/2/

Secondary breast cancer in the bone:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/7/

Also available if you are interested is our live chat for those with a secondary diagnosis, this runs Tuesday evenings 8.30 - 9.30pm and Thursdays 11.30am - 12.30pm, I have put the link to live chat below for you to have a look at.

breastcancercare.org.uk/community/live-chat/

I hope you find some or all of this info helpful. Take care,
Jo, Facilitator

Hi Dilli and AnnB

You have definately come to the right place if you want your spirits lifting and are feeling overwhelmed with the enormity of everything at the moment. I came back on here a couple of months ago after being diagnosed with bone mets in my hip, neck, shoulder, ribs and spine. I was feeling devastated after being led to believe that I possibly only had a couple of years left. The ladies on here have changed my attitude completely, with inspirational stories and experiences, alongside practical help.

I now don’t consider myself to be terminally ill, instead I have an ‘incurable but treatable’ disease and there is a big difference! There’s a big difference psychologically between ‘dying of cancer’ and ‘living with cancer’!

Good Luck in your race for life Dilli

AnnB - I wonder if you have the same oncologist I first had when you felt you didn’t have long!! :O) I have since had others who have been more upbeat and given me more confidence. I only ask because I live in Chester, which hospital are you being treated at?
Good Luck on Friday and keep us informed on how you get on,

Take care and best wishes to everyone!

Nicky

Thanks for comments Nicky. Havent been referred over to Oncologist yet as still under the Neurosurgeon until bi-op results come in. Was supposed to have this done last week but managed to get gastroenteritus so it had to be delayed. Neuro said he will be transferring me to Christies next and that bone mets are treatable. I am HER+ and he says that there is an even newer drug than Herceptin that is working wonders and will prolong my life. Maybe someone on here knows which one he is referring to.

I was first diagnosed in 1999 and had recurrence in 2003 when I then had chemo and radiotheraphy. The oncologist I saw at Macclesfield was brilliant but unfortunately he has not retired.

I was convincing myself that there was no hope as I lost my brother to bone cancer aged 40, my Uncle at 57, my grandmother had vaginal cancer and my father had bowel cancer which he didnt pass with.

Just want this bi-op over and done with as I was 10 mins from going into theatre last week when it was cancelled due to me being so sick and then I will feel Im getting stuck in and doing something about it.

Im so glad I found you all :slight_smile:

AnnB and Nicky
Very late to be replying but I went for a little practice walk after tea and felt terrible - swallowed a load of diclofenac and paracetomol.
It would be great to see anyone and everyone at Arley on sunday - even if I cross the line in a wheelbarrow I will put it down to just one of those bad days and hope it passes. I am racing for you all ( and secretly chuffed to little mint balls that I have over £1200 sponsorship)
I go to Clatterbridge for my treatment - could have gone to Warrington but I followed my consultant when she moved back to Clatterbridge - I think continuity of care, if you have faith in your oncologist, has a lot going for it.
I haven’t really talked to any other patients but am quite surprised that I am putting my thoughts down on here. The threads I have steeled myself to read have really changed my attitude to my situation. I am living with cancer … not sentenced to anything. Thank you for getting that through to me. The Ct scan, bone scan and radiotherapy (all on friday) won’t be quite as scary now.

Hi Ladies - especially all of you who have just joined the club that no-one wants to be in! I can see you’ve already had support from some of us who have been on here for a while but I just thought I’d add my twopennyworth.
I was dx in May 2008 with bone mets and I can remember all too clearly how I felt and how scared I was. As I think Dilli says, I’m not brave or ‘fighting’ I’m just getting on with it - then and now. However, these forums prove that there is life after a secondary dx and that is was really helped lift my spirits when first dx. Sadly these secondary forums do also show that secondaries can lead to a premature death but please don’t feel that you have to read anything that would scare or not help you right now - I certainly didn’t! Keep in touch with ladies in a similar position to you and it is a great help to read of treatments, success stories when we get our results and generally the support we can all give each other. From a treatment point of view I am not HER+ (and was tested both in 2003 for my primary dx and 2008 for my secondary dx) but am ER+ and PR+ so have hormone treatment as well as bone strengtheners, all of which is working well for me. Since having chemo after my mets were dx (and a local recurrence) I have kept away from hospitals other than for the dreaded scans - and worse - the results and lead a very full active life. I hope this helps by adding another ‘story’ about life with bone mets and I hope all of you waiting for scans or results get good news and can then get on with treatment plans and picking up your lives again. Good Luck
Nicky x

Good morning all - I’ve just written a long post and submitted it and it’s disappeared into cyberspace, so here goes again.
Thank you for all the replies and welcome to AnnB and dilli.
It’s horrible knowing that we are now ‘patients’ and that our lives will revolve around those dreaded scans and their results.
My ‘birthday’ scan is looming large on Monday, but I see AnnB that you have your scan on Friday. Will be thinking of you.
Nicky, you are right when you say that the situation is overwhelming and yet we seem to deal with it in our own ways.
I am lucky in that I don’t have children, just my lovely Mark to whom I am getting married next…OMG…THIS month! Ineed to focus on that, and look forward to rainbows, sunshine and peace, courtesy of dilli!
All for now - I’ll be back!
Isobel

Hi All

Just to let you know that Live Chat for Women with Secondary Breast Cancer is starting at 11.30. Please join us.

breastcancercare.chatjet.com/bcc/

Just follow the link above

Best wishes

Poppy