This is my first post on this site. Just wanted to say hello. I am in my (v late!) thirties and live in Scotland. Found out i had breast cancer last summer - breast lumps i’d had a good few years but had been told were most likely fibroademomas. Nobody seemed concerned at all about them and so i wasn’t either - up until the point they started to distort the shape of my breast. even then i thought it was more a cosmetic thing. By the time i was diagnosed properly it had already spread to my pelvis. I am on tamoxifen and bondronat and zoladex. Had a mastectomy and radiotherapy earlier this year. It’s weird looking and feeling fine but knowing i have this ticking timebomb in side of me. Sometimes i forget i have cancer - but it’s always there in the back of my mind, shuffling along behind me like some doom-laden, unwelcome guest! Upside of all this? it has made me appreciate life more. worries and insecurities that plagued me before seem insignificant now. I have cancelleed my pension and don’t worry too much about expensive anti-wrinkle creams now! I am trying not to be stresssed and trying not to sweat the small stuff - (easier said than done though) and am determined to make the most of the life i have left. I have pretty much worked full time since my diagnosis - apart from the 6 weeks after my op but feel like my days are flying by too fast and work fills too much time and the weekends are far too short - even more so than they were before! . I want to take some time out to “stop and smell the flowers”!
I am hopeful my cancer is slow growing so i take comfort in stories like that of Scottishlass- People who have lived years with the disease. They are the cases i focus on!! I am planning my 40th birthday soon and am determined to have an even better 50th! People hear so much about those who ‘beat the disease’ or are ‘cancer surviors’ or are ‘cured’. it’s hard to know what to say when that dosen’t apply to you anymore! It’s difficult when people ask how you are or assume that because you seem back to old self things are going well. I’ve still not quite worked out what to say, if anything, but at least here i can say what’s on my mind and know there are other people out there who know what i’m going through. I have sort of accepted i am a ‘Dead girl walking’ but i am proud to be walking in such amazing company. xx
Hi Sarah - it’s good to hear from you, I was wondering how you were getting on - 2 down 4 to go. Hope the FEC se’s won’t be too bad for you, and you’ll soon start to feel that lump reducing. Rollercoaster is exactly what it is - I found about day 4 or 5 on FEC I would get very tearful, and then the next day I would be fine - maybe the steroids, who knows, but it can be frightening to have so little control over your emotions. Take care - hope you get some sleep tonight.
Hi
deadgirlwalking - you sound as if you have the same attitude as I do! A ticking timebomb is how I describe my mets but, like you, I do make the most of everyday and ‘don’t sweat the small stuff’ anymore. Good luck with your current treatment, I too am on similar although had my ovaries ablated 18 months ago so I didn’t have to stay on Zoladex. And good luck with the party - may you have many more celebrations
Sarah - I too had FEC when I had my secondary dx and know how you must be feeling. I had very good results with it and this definitely helped me cope with all the cr@p that chemo sends us! I hope you pick up in a few days (I found that I usually did after day 5 or so) and you can make the most of your ‘good’ days in between sessions.
And thanks again Val for giving us all hope and inspiration when you have lived with secondary BC for so long x
Nicky x
Hello deadgirlwalking, Welcome to this thread and the site. When I was diagnosed there was no site like this and I felt quite alone at times. Family and friends are all very well but sometimes you need to express your fears or communicate with people who are going through something similar. I didn’t “post” anything for a long time and it took me ages to know how the site worked but I did read the posts that caught my eye. Now I am on here most days and drop in and out and read my “saved discussions” first to see how everyone is doing.
I see you live in Scotland. I don’t know where you are but I live in Edinburgh. There are a group of young ladies your age who meet up regularly and you are welcome to join us if you care to. There is also a group who meet up in Glasgow and also join in the one here too! Send me a private message if you want at any time and if you want to know how to meet up with anyone… I am so pleased to read that you have found some comfort in my posts. I was 39 when I was first diagnosed and I remember thinking that I would never see my daughters grow up as they were only 7 and 14 at the time. They are now 28 and 35!
It does give you a different attitude to life. As for stopping to smell the flowers…I was doing that in the wee small hours…watching 2 hedgehogs in my garden tipping up a saucer filled with cat food and even licking the plate! Then a fox visited and cleaned up the bird food I had put out for the ground feeding birds. Now I couldn’t do that when I was working. I gave up work when I got bone mets. Do you know you can apply for Disability Living Allowance (DLA) now that you have secondaries? PLease join us on this thread and let us know how you are doing.
Everyone deals with their cancer differently. I am very open and if anyone asks me how I am I just tell them the truth and explain that secondaries do not go away. I am glad you have found us, but sorry you have had to join us, if you know what I mean. Much love to everyone on this thread. Sun shining where I am. I hope it is where ever you are. Val
Welcome dgw - glad you’ve decided to join us on the thread.
Oh Val I’m very jealous of you having hedgehogs in your garden - not least for their capacity to munch through slugs and snails. But with two rather fierce terriers patrolling our borders, we don’t get many wildlife visitors (not twice, anyway!).
Hi Finty, I still have slugs and snails in my tiny garden but the hedgehogs have certainly reduced the numbers of them! I don’t feed them cat food every night so that they go hunting for them. I am a bird lover too and right now I have goldfinches, coal tits and a robin at the feeders. It costs me a fortune in bird food though as I buy the best for them from the RSBP visitors centre in Fife. But it does attract a wider variety of birds and they keep coming every day to see what is on the menu…I even buy currants just for my blackbirds and robins! Good to see you doing so well. LOve Val
Val it sounds delightful - I was such a keen gardener before bc, and hope to get back to it next year. We are lucky to have very big garden (especially for London) but it does mean you don’t see much from the house, and at this time of year it isn’t very tempting to be outside a lot. So maybe when I feel more confident to plan for the future a lovely little courtyard garden would suit me better - I don’t think the dogs would be very impressed though! It’s so nice to be thinking about normal things
I was diagnosed in 2008, aged 42, with mets in my spine and liver. I didn’t have any symptoms from the mets. I had a mastectomy, chemo and herecptin. I now have herceptin, pamidronate and tamoxifen. Like you I worked through most of my treatment and have continued to work, and survived a round of redundancies. I can only echo the feelings that you and others have expressed when diagnosed. It takes a long time to get your head round it. I use work as a distraction, it makes me feel normal. I am relatively new to this site and I find it a source of hope and inspiration.
Hi everyone! - Just wanted to make contact with you all. I have posted on other threads – but this seems to be the place to be!
Diagnosed with Spinal Bone Mets 9 days ago (but seems like a lifetime!). Initial breast cancer diagnosis and treatment in 2009 – so do not feel like I have had much time ‘off’. CT scan looks clear – PET scan on Thursday to check. Off to the Marsden on Monday for a second opinion! My local team is looking at the surgical removal of the whole vertebrae – a massive op, so was wondering if others had had this procedure for a met?
Also, on co dydramol for pain, but not really covering it! I was wondering about the Gabapentin that I have read several you are using? Is this a patch or tablets? My GP did prescribe Tramidol – but literally sent me to sleep for 12 hours! Any suggestions?
Thanks in advance for your welcome to ‘bone mets world’! And thank you to those of you who have helped me find you all from my other postings!
Hi Sadie, sorry your results have come back positive for bone mets, it is scary in the early days but like the last time you had treatment once the next course of treatment commences you will begin to accept things and hopefully start to feel normal. I am only about 3 months into starting treatment and will be having my third tablet form of chemo on Wednesday along with herceptin and Zometa.
The early days of diagnosis was so long winded, well over 9 months, by the time people were listening to me and eventually giving me an mri I was exhausted both from worry, feeling generally unwell and the worst of all was the pain. I got a Macmillan nurse straight away and she guided me well through different pain relief and I am now pretty much pain free. I am on 50ml Zomorph, which is slow release morphine, twice a day. In the early days I was also on paracetomol and diclofenac and also ordinary morphine for any breakthrough pain, but I havet needed the additional drugs for about 6 weeks.
In a reasonably short time from starting treatment, I have gone from someone who could no longer walk, needed a stair lift to get upstairs and pretty much bed bound back to my normal self. Out nearly everyday and getting 2/3 day breaks all over the country.
If you have to go through surgery I am sure it will be done with the specialists full experience and I have read on this site of people having surgery successfully and getting their lives back to normal.
Best of luck, its early days for you but it wont be too long before your into treatment and back into control.
Hi Ann – Thank you so much for your reassurance – Our stories seem similar. 6 months of increasing pain in my lower back and no one listening. My three sets of Bone Scans came back ‘clear’ – it is showing as a ‘cold spot’ not a ‘hot spot’ and the hospital told me all was OK! A biopsy later and all is defiantly not clear! Anyway, I will follow up the pain with my MacMillan nurse and GP and try and get on top of it. I am far from this at the moment!
Interested to hear that the Chemo is tablets – how does this compare to the injections I have had previously? It sounds like it has worked really well for you – or, have you had radio also? Thanks again for taking time to write,
when I first read your post above I thought you meant the whole of your spine!!! and was going to post I had never heard of anyone having that done LOL. I re-read some of your other posts and realised you were talking about your L2 vertebrae. All my spine has been damaged by bone mets since 2002, but currently my major problem is around L2/L3 but because I have a soft tumour outside them which is wrapped around the nerves that exit there. However I think with your pain meds they sound woefully inadequate. Usually for the sort of pain we have where the other meds don’t do much some form of morphine is prescribed either as slow release oxycontin or mst - I couldnt get on with mst so switched to oxycontin. Then there is the other form of them which can be taken as needed usually something like 5mls at intervals till they can titrate how much you need as slow release. They are called oxynorm or oromorph (there are probably others). They do have a tendency to make you drowsy at first but personally I have found my body adjusts a bit. I am also taking Gabapentin (pills) and have found amongst so many I have tried that one is working well for me. There are also patches that last for about 3 days - fentanyl is one, and I suspect there are others. I have also found so much help from my macmillan doctor. I will be interested to hear how you get on at the Marsden
Dawn
xx
Hi Sadie, I had injection chemo 7 years ago and that was FEC. I am now on Xeolda/capacetine and have them from day 1 thru to day 14 and also vinorlbine which is 3 tabs on day one and 3 tabs on day 8.
I am also on Zometa and heceptin one iv every 3 weeks.
I have hardly any problems thankfully and those I have are related to constipation or diarhea trying to get the meds right to accomodate this hasnt quite worked out yet. Had terrible nausea for months before I started chemo but had to go in hospital for 6 days due to an infection and the nausea stopped then and never had trouble again.
best of luck getting your treatment plan on the way
Hi - Phew - Got some fentanyl to try and a referral to a Macmillan nurse. So I hope a bit of normailty can enter my life for the next few weeks whilst the final tests are done and then a treatment plan put together. I will let you know how the referral to the Marsden goes, Dawn. My whole spine removed may be one step too far - but glad it made you laugh! Sorry for not being specific enough!
Sounds like you have got a result Sadie! What form is your fentanyl? I also use that as the fentanyl actiq lozenges and have found them a huge help - maybe not quite so effective now as they were when I first started with them. I do know that form usually is not given unless the patient is already on a morphine based medication and then they are used for breakthrough pain. Hope you get a good Macmillan nurse - they can be such a help.
Hi Dawn - My fentanyl is a patch. Lasts three days - and so far so good! Such a difference to yesterday when everythig hurt and I was really struggling!
You said you had been to see Prof at the Marsden. Was this also for a second opinion? If so, did he suggest something different to your local NHS centre? If so, how did you work out which way to go? (sorry so many questions!)
Please don’t feel you have to apologise for asking questions. It’s how we all learn, and I am very happy to answer. Prof wasnt a 2nd opinion. I have been fortunate for 20years to be under the Marsden. Original it was one of the famous twins. What a lovely man he was, but the Prof is great as well. Both men who know how to listen to their patients. Will you see him at the London Fulham Road Marsden or the Sutton one?
I also tried fentanyl patches, but unfortunately the changeover for me wasn’t handled as well as it should have been and I reacted badly to it. But I certainly found the lozenges a huge help for the breakthrough pain episodes.
Do ask away if you need to, or if you are more comfortable using the pm system then do it that way.
Hi all
I have bone mets, diagnosed at same time as primary in may this year.
I was tried on Femara with no success and have just had my 3rd FEC. Things now appear to be going in the right direction. I also have Zometa at the same time. My onc is taking an aggressive stance (his words) on my condition in view of my age(50 now) and general health.I was devestated when hormones didnt work and I was told it was unlucky… not very scientific! However onc ordered a second biopsy on the offending lump and is was genetically tested and I am now a candidate for Herceptin and it explained why Femera didn’t work. After FEC he is proposing Tax, Herceptin and Zometa. He has made it clear that i shall be on Herceptin and Zometa indefinately.
In a way I feel fortunate in my onc. He says I am an interesting case and he is not taking a palliative approach. So, I reckon if he is spending so much money on me I must have a pretty good chance of hanging on in there for a bit!
Anyone else had Tax and Herceptin? I am feeling nervous about the Se’s I have felt fine on FEC. I have FEC100 apperently.
x sarah
Hi Girls
Interesting to hear all your stories, treatments wetc. I was disagnosed with bone and liver mets 6.5 years after my initial BC. Like everyone I was devastated and told I was just ‘unlucky’… It seemed no one was listening… From around April - July I was having funny pains in my back and around my tummy… anyway to cut a long story short I was finding it difficult to ride my horse without a back support and getting in and out of bed a nightmare. Eventually I had to give up hiking, riding, gardening…I really thought this was old age. I started taking industrial quantities of Diclofenac and paracetamol/codeine just to get through the day… It got to the point I couldn’t turn in bed or get out of the chair without help. I still battled to go to work though. Eventually after my diagnosis and now just had my 4th round of AC chemo+zometa I feel great!!! no pain, well a little in my ribs, but hey, I can get out of bed, bend and stretch, get out of the chair, go hiking…a little gardening but no riding as need a hip replacement (LOL)…but not complaining. I’m just determined to get on with life enjoy myself and I may even contemplate a holiday…oh yes, I’ve just had some mega retail therapy too…
Wishing all you ladies out there well…
Jane x
