Breast Cancer Now Forum

Evening everyone - Just thought I would do a quick post before I settle down to The Great British Bake Off! Anyone else addicted? Anyway I suppose I just want to ask for some advice/experiences re: reconstruction. I had my mx in July 2013 and was told before sec dx that I couldn't have a reconstruction straight away. Now with sec dx I asked my onc and BCN whether it could be a possibility. The complication in a way is an area behind my breast bone that they don't know whether is disease or not but  my onc is erring on the side it is more likely chemo/rads damage. I can go with that - he's decided not to put me on cap for the time being. He says as long a s my heart is ok he sees no reason as  to why I can't have reconstruction. He didn't seem to be able to answer my question - Would the surgery be stirring cells up into cancerous action? Would I be best leaving it alone?' I have a chat with the surgeon on Monday.  What are your experiences? Are reconstructions possible with stable bone mets? If  surgery means that the cancer will return quicker I won't bother. I  don't mean to sound vain and am very aware that many of you are in pain as well as facing greater challenges and this would be the least of your worries. But while I am feeling ok - I just want to feel 'normal'.God knows I know that feeling won't last for ever! Does that make sense? I am just so very conscious of having to wear high necks, vests, scarves etc. Anyway I would love to hear your advice. On a different note spent the day yesterday knitting a good friend a tardis hat for his Christmas only to find once I'd finished I'd written polile box instead of police - d'oh! Love and hugs to all xxx   ... View more

Hello everyone - I haven't been on for the new site for a while because I couldn't figure out the new website! Hello to everyone old and new. This is my first attempt at posting on here - so fingers crossed it works! It was you Val on FB yesterday who said I should give it another go. Hope you have a fab time in France. I don't want to write loads in case it doesn't work! But to my fellow boney bookworms - I have a recommendation. I have just finished 'The White Princess' the Phillipa Gregory sequel to the drama that's just been on the BBC. It was a very good read! Anyway love and best wishes to all Katie x   ... View more

Coco - I am so sorry you have had to join us. I have bone mets in my spine and pelvis. I was dx with secondaries last JUne six months after my primary dx. I can't believe your Onc to be honest! No one can put a time frame on your life. Oncs however great they are - are NOT God! They do not have a crystal ball (I nearly wrote crystal balls!!!). You have to remember that what you have is treatable. Many inspiring ladies on this site have lived with this disease for years. A friend of mine who comes on this thread always says we live with a condition and we just get on with it. That's the way I think of it. I admit to be being lucky so far as I have had no pain so far. My last scans showed that my mets had reduced. Things are possible! I am back at work and enjoying it! What I am trying to say is - try and stay positive. There are lots of treatments and people out there with fantastic inspiring stories. Are you still starting chemo soon? Good luck with it all. Let us know how you get on - and remember there are lots of us out there just getting on with our lives! You aren't alone. No doubt someone with more experience will be along in a bit too. Sending you a BIG virtual hug xxx ... View more

Claire - sorry I can't help but I do hope you've managed to speak to someone.Let us know how you get on xxx Tylerrose - sorry you've had to join us but as you'll soon get to know we are a friendly bunch. I'm on herceptin and to be honest I tolerate it very well. I asked my onc about perjeta but he wouldn't consider it whilst herceptin working. No doubt down to money! I'd be interested to know how you get on with it. Can I ask which area of the country you are in? I am under Christies in the North West. Good luck with your treatment. I know I felt a lot better when the treatment plan was put in place. Geordiex - I am by no means an expert and can only tell you what happened to me - but in my experience the bone and ct scans seem to back each other up. When I got my primary dx - I had a bone scan and 'hot spots' showed up. At the time I was told that these areas were probably down to wear and tear and no disease was found. It wasn't until 6 months later, after my chemo that the follow up ct scan picked up on the fact that the hot spots had altered due to chemo - hence the secondary dx. What I am trying to say is that I think they use different scans to get a clearer picture. Hope that makes sense? I am sure there will be other ladies along soon with more information. Hope everyone else is keeping well and dry! Alice and I got caught in a thunderstorm earlier and got wet thro! She thought it was great fun. We went to get material to make new cushion covers. I think my house has a definite wildlife theme - we got bright fabric with owls on! xxx ... View more

Sorry you have had to join us Janine but like everyone has said the people on this thread are lovely and very knowledgable. You are not alone. I am 42 - my primary dx was Dec 2011 and sec dx in June 2012. I have bone mets in mets in my lower spine and pelvis. My current treatment is herceptin every 3 weeks. I only had 6 shots at zometa - my onc only gives 6. Different oncs and areas vary. I may be joining the cap chemo gang soon but have put that thought onto a back burner until after my hols. As for work I am a teacher - I decided to go back and that was the right choice for me but everyone is different. My only advice would be not to rush any decisions and do what you think is right for you. I remember getting myself in a right tiswas when I was thinking of whether to go back or not but really its not worth the stress all the worrying. As I say I am glad I went back - its given me - me back if that makes sense. It is a great distraction and I know I am very lucky at the moment to be able to do it. I try to see having secondary bc as having a condition that I live with. Keep posting! Katie x ... View more

hi everyone! Just wondering how you are June? I hope you managed to chill. I am loving all the book talk. It's like having our very own book club. I'd much rather be part of that bc group than the other - if you get my drift! I have just started The Stolen Ones by Richard Montanari - nt for the feint hearted. Had some weird disturbing dreams last night. It has been a lovely day here up north. Spent the day at Heaton Park with Alice and frirends and was surprised at how quiet it was. It is usually busy. Off to the pictures in a minute to watch Despicable Me 2! Hope everyone is having a good day xxx ... View more

June - good luck with the letter writing! Give it to them straight!!! I think Vercors has a point - getting the press involved could be a good idea. It's definitely worth thinking about. I am going to look out Ken Follett books when I go to the library - thanks for the recommendations for 'new' (to me at least) authors. Belinda I am the owner of Bob the stags head. Not a real one I hasten to add! I also have 3 wooden ducks on my wall in homage to Hilda Ogden. Think the bc has made me a bit loopy!!! Well talk about embarrassed this morning! I got up leisurely as my little girl had a sleep over last night at her Grandma's. I had breakfast, did a little work and went to the toilet. Only to find the window cleaner was there! Eek - how will I face him when he comes for his money???? xxx ... View more

Doodlecat - that is totally rubbish news from your Housing Association. It is such a pity you have to move. You are right - this disease just keeps taking! No doubt though when you do get your new house you will use your artistic flair to create something special. I emulsioned my kitchen wall a very boring white on Sunday as it needed freshened up and I had spare paint. The rest of my house though is a tad more colourful. My favourite room is the dining room. It is the first room I ever papered. It is a green, teal and brownish stripe. The curtains are the same colour but large spots. I have a huge canvas that my daughter painted on (in the same colours) when she was 3! It doesn't sound great from my description but I love it! Val - I read the 50 shades trilogy whilst on chemo last year. Must admit it was all very samey after a while. Didn't have me rushing out to buy any 'toys' that's for sure!!!!! 🙂 Thankd for the book suggestions. I think I picked up Gone Girl in Tesco. It was on offer - always a bonus. Has anyone been watching The White Queen? - I don't tend to watch a lot of TV but really enjoying this. Any ideas on the new Royal baby names? My daughter is into The Famous Five and has taken a liking to the name Julian! Not so sure on that one! Katie x ... View more

Val - sorry to hear your news.Like Doodlecat says I hope the rads start soon and they 'sort you out'! I have had a very frustrating day. I wanted to go to Liverpool for the Secondary BC meet up. I got as far as Manchester and had to turn back. Lightening had struck at Picadilly and there was a fault with the signals. The trains were haywire. Took me ages to get home 😞 I missed having my scone and catch up with everyone. Doodlecat - glad you enjoyed Gone Girl. I have just googled the film cast. Would never have thought of Ben Affleck, As for the actress to play Amy - in my mind it would have been Nicole Kidman 10 years ago. Really not sure who should play her really. I have just read Mo Hayder's Poppet which was a good read and before that Peter James' new Roy Grace story. Well it looks like the heavens are going to open up here. Still very muggy though! Anyway while I have 5 minutes of peace - I am going to try and book a cake making course - my friends got me a voucher for my birthday. Love to all xxx ... View more

Just wanted you to know Val that I am thinking of you too. I hope all went well with your results xxx ... View more

Carrie Anne - I just wanted to let you know that I have been thinking about you and so hope that you have been able to talk to someone. xxx ... View more

Helen - that is fantastic! Congratulations!!! Hope you are going out to celebrate? xxx ... View more

Helen - that is fantastic! Congratulations!!! Hope you are going out to celebrate? xxx ... View more

Dawn - I hope everything went well today and you have got some answers. Thank you again for your advice. I have now written down my questions and I will ask to speak to the onc on my next visit. x Doodlecat - I loved the ending of Gone Girl. Let me know what you think! I can picture it as a great film! I am now just reading a MC Beaton - Agatha Raisin book. They are very formuliac but an easy read. I am waiting for some books from Amazon to arrive - the new Jeffrey Deaver(Lincoln Rhyme series) eing one. I love new books - especially crime fiction. I have kindle and an ipad but I enjoy holding a book. If I had money I would have a library in my house. My hubby thinks books are clutter so even if I won the lottery I don't think I would get one. Thanks Belinda for your words of wisdom - I won't tell a soul about the socks with crocs.:) It could be a game though couldn't it - a bit like Where's Wally, but spot the secondary lady on oral chemo! Well I may have secondaries but I am not out - I amazed myself let alone my class of 7 year olds today when I scored 2 rounders! God knows how but I managed to wellie ( a Northern saying for hitting the ball hard!) the ball. To be honest it was the first time they had ever played and their fielding was shocking- so a fast walk got me round the bases. But still - I rock!!!!!!! xxx ... View more

Hi Dawn - Good luck with your scan tomorrow. Let us know how you get on. I do hope they can sort you out! The Registar seemed to be going back and forth to Onc today. The man himself didn't come and see me. I never really thought to ask if they thought the 'abnormality' was a real threat. At first I was told by registrar they would keep an eye on it and scan me in 3 months to give them a clearer picture. Then he went to Onc, came back and said Onc thought it wasn't cancer but gland damage or something and that due to my age saw no reason to scan for a year. He doesn't like to over scan. Then Registrar mentiioned going on Ibronic acid (I know I've spelt that wrong) as I finished my 6 shots of zometa (as per Christie policy). He went back to Onc came back and said they thought putting me on oral chemo would be the way forward as a preventative measure. The Ibronic acid wasn't mentioned again! I think I was just so taken aback I didn't know what to say. My nurse - who is a star - and is my regular at giving me herceptin said I had to go away thinking that both my bone and ct scan results were very good. I don't know what to think! I always go by myself for treatment now and with hindsight could've done with someone with me to ask the questions I don't think of at the time. Oh I did have radiotherapy on the side the tissue is showing but seemingly it was showing there on original scan. I will write my questions down for next time though! Thank you for helping me to think things through. I just feel like I have got some normailty back in my life and then this comes along. Hey ho! On a completely different note - I have just finished a brill book for those who like a good thriller - Gone Girl by Gillian Flynn. It was recommended in Good Housekeeping and was a cracking read! Hello to all - sorry for not posting of late. Will try harder! xxx ... View more