Breast Cancer Now Forum

Val, how are you?  Site so quiet.   Hope you are with your loved ones and comfy.   Thinking of you.   Much love, Claire ... View more

Val, so sorry to hear you're struggling at the moment.  You have been such a light to me from my first postings on this site, your wisdom, warmth and honesty have helped me come to terms with this bloody crap disease.   I've just been told the BC is now in my bone marrow, had blood transfusion on Friday and start new oral chemo tomorrow.  Through your posts I'm determined to keep going, doing all the things I've always done and living - you've taught me that and to never to give up - make life difficult for the nasty little BC sods!   Much love to you and Chris.   Claire xx ... View more

Just reading about Denosumab and Tamoxifen.  I've got bone mets and have had other mets which have been resolved, I'm ok, just getting over op for recurrance but it was interesting how urgently they wanted to get me back on Tamoxifen after Arimedex,   although my Onc said there was no evidence  Arimedex wasn't working. It was my Breast Consultant who was keen on Tamoxifen.  Had my first Denosumab last week and had no side effects.  The only thing I'm worried about now is that I seem to have to organise  Densomub jabs  with my GP on my own.  Just don't know how that will work - anyone have experience of this?   Claire x ... View more

This is the first time I've posted on this new site.  Meg, I don't know how to send the messages as before but hope you are well, I have been thinking of you.   Sorry to read so many are having pain issues, hope that will pass with treatment.  I'm very lucky in that at present I'm pain free.  I did have my operation for a recurrance  a couple of weeks ago but some of the skin has separated and ouse s fluid which smells bad.  Don't know whether to make an issue about it or whether its to be expected.   I did though have a lovely holiday in Cornwall last week, made me feel great. Sea, sand and sun, ahh!     Saw a new GP today, she was lovely but I wasn't so sure the feeling sorry for me helped.  At the end of the day it is what it is, crap, I just have to get on with it; Val, you inspire me when you say enjoy every day, such a good way of thinking, your strength of character  shines through always.   Claire x ... View more

Hi, Got my operation for recurrance on Wednesday. People at work don't seem to care, friend said I wouldn't be missed, other friends think it'll be water of a duck's back. Everything in me says I'm valid and should enjoy my life, but the support I'm getting makes me think a quick exist would suit everyone better. Sorry for being glum but my self esteem is zero right now. Cx ... View more

Hello Ladies, Don't post often but just to say got results of scan today. Scan fine, no change. Breast cancer recurrance was just some, even just one, cell that had got caught in "deadend lymph vessel near skin" from original op so another small op and change of tablets. Onc is changing me from Zometa to Denosumab to. Does anyone have experience of this drug? I'm jumping about the room with delight because the Onc said the op would be before I go to Cornwall on holiday at the end of the month so I'll have a care free (well relative with secondaries) time. Claire xx ... View more

June, looking at your post again, I really do wonder if you had surgery to remove the breast lump perhaps mastectomy, hysterectomy, rads and chemo you might feel all is being done that could be done. As we both know there are many ladies on this site that live for years with bone mets. Just a thought. Claire x ... View more

June, We do sound similar in many ways. I don't know how proactive your doctors would be to your insistence on surgery. For me if it is possible to have it removed I push for it, although sometimes the doctors are so busy in being "considerate" to me and how well I feel they fail to recognise the, "bloody take the thing out won't you" attitude I calming try and express. Like with this new breast lump thing. Becasue I said to the Onc I felt well the nurse said, well he wouldn't like to do much, whats that all about? Better surgery when you're well, sort of, than when your completely knacked from treatment. I'm for chopping it out unless you can't live without it. Yes, spoke to the nurse, sometimes I think we could advise them better than they advise us! Good you're feeling well, go by that and always insist on surgery if you feel it is right for you. Somewhere June I recently saw on this thread a thing about books being discussed, I'm going to put my bit in by saying I loved reading Susan Sallis when I was going through chemo, found it very comforting. Let me know your thoughts about what I've mentioned. Love Claire x ... View more

Geordiex, I had a bone scan first which showed up mets in lower back, PETCT scan did the same and CT but since then Onc has relied on CT scans only. My first bone scan was inconclusive though but the PETCT confirmed it. I've learnt on this journey that there is only so much they can tell from scans and they probably always err on the bleak side. Now whenever I asked about my bone mets they seem a bit vague, I usually get "there is no way of telling if chemo etc has killed them off or not". Half way through my chemo for an ovary met the ONC said there was a large area in my liver showing in the CT scan - I thought it was all doom and gloom until the next scan when he said there was nothing there and it was probably a cyst, I just had a cystic liver apprently. Again, I had an MRI before seeing the gynocologist before the hysterectomy for the ovary met and my god, what a miserable so and so he was, if I'd listened to him I wouldn't have bother with the op and just spent all my savings. As it turned out after the op and chemo all is clear down there. My next hurdle is the recurrance on my mastectomy scar, which as you can see above is tough but just a bump or rather lump on the road. All I am trying to say I suppose is go by how you feel and that the doctors aren't always right. Claire ... View more

Thank you June. I did speak to a nurse, not my usual one and she said it was normal procedure prior to any treatment so they can see if it is working and have something to compare with. I notice you say you haven't had any ops, is this because it could be treated/managed with hormone therapy alone? Tylerrose, I do agree with June, once treatment has started it is easier, the waiting is always difficult. Good luck for Friday also. Hello to all the new ladies on this site, sorry you have had to join us as Val says but I have found it a great help over the years and hope you do to. Claire ... View more

Hi everyone, I haven't posted for a while but usually only post on this site. History is DX 2010 with ILC, mastectomy and node clearence, DX secondaries to bone, tamoxifen zometa, met to ovary, hystectomy and chemo, arimidex since last September. About four weeks ago I felt small lump on my mastectomy scar, saw Consultant who at first said there was hardly anything there but after biopsy and seeing him again he said there was a few cancer cells there. He said treatment would be a change of tablets or a one day operation to remove it. However looking on the internet at all the tumour marker tests he's sent me for has struck panic in me. Is it normal to have so many marker tests, Cae, Ca125, CA57.8 (I think). The last scan I had was April and my Oncologist was happy with that, no spread in bones, nothing elsewhere. I'm feeling really scared and can't get hold of my breast care nurse to discuss it. Couldn't go into work today because I'm feeling so frightened. Has anyone else had all these tests after a recurrence or anything else? Your comments would be much appreciated. Claire ... View more

Hello boney ladies, I don't post often so just a quick explanation. Diagnosed with BC then after MX with bone mets in 2010. Was on tamoxifen and Zometa for a year then scan showed ovary full of cancer in December 2011. Had hysterectomy and six lots of Taxol which ended last September last year. Had last scan result last week after being put on Amiridex. No new bone mets since diagnosis, everything else clear, such a relief. They are keeping me on the same treatment and had result of blood test today, all normal and very good immune system. I know I'm lucky and hope everything stays stable for a long while yet. Mel, I'm back at work now but I know they weren't happy about me being off during chemo. What can you do though. Hope your lot will see the light and treat you with a bit of respect and understanding. Love Claire ... View more

Hello ladies, I haven't been on this site for a while so hello to everyone who is new and sorry you have had to join the club nobody wants to join. I hope you find as much help as I have. Everythings rumbling along. I'm on Arimidex at the moment and have been on Zometa almost since I was first DX. Angelfalls I would just say I don't get bone swelling but my ONC did say I had very dense bones because of the treatment. This month, whilst I was having my infusion I was slightly confused when a nurse said, "why are you having this?". I explained I had BC and bone mets. Her asking me why I was on it threw me a bit, I just do and take what the ONC tells me but then you start to think, probably wrongly, perhaps I don't have mets at all. Up and down, up and down, sometimes I hate this disease so very much. Much love Claire ... View more

Hi boney ladies, I've been reading your posts, much love to you all. All quiet on the western front here! Katie, hope all goes well when you see your ONC on your own. Big hugs. Claire xx ... View more