Hi Lucinda - no pm received - Halloween goolies at work again? So sorry to hear of your pain and anxiety, hope the Marsden can help you. I found them great but it was a long trek for me and given what's happened in the last few days, best that I was here not in London.Thinking of you. Hold on to the good stories from others in a similar position.I am down but not out. Realistic not pessimistic, so hang in there with me. xxx
So pleased things are moving at last.Did pm you earlier in the week to see how you were doing but I think it disappeared into cyber space.I am really sorry things have progressed, but it sounds as though new onc intends to get it under control without delay.
Even though it has not been all good news and you have had a torrid time over the last couple of days,it must be a relief you now have a treatment plan and things are moving forward.Even if you did not get everything you wanted from RM at least it has resulted in you getting an onc who has listened to you and given you some hope for the future.
I go back to RM next tuesday for my results,am really stressed out at the moment.Pain has increased since going for second opinion so concerned about progression. At least I will know one way or the other.
Good luck with all the treatments and best wishes to you and all your family.I am sure they will be a great comfort and support for you.My son and OH coming with me next week for my results,need all the support to get through these things.
Hear what you're saying and good luck with your conversations. So true what you have said about being in charge of your own care.
I phoned the Marsden this afternoon and have appointment with GP today to transfer my care there. There is only 1 BC onc at my hospital and I have decided I have had enough of the stage 4 stare (you'll know that one I'm sure!)
Hope that the treatment gives you some ease and you will know that you have given yourself the best chance by not giving up.
Love and hugs to you and your family
Hi all, just come out of hospital. Following second opinion at Royal Marsden 3 weeks ago,(they suggested Faslodex but stay at local hospital) I changed Oncologists at local hospital - totally different approach - he LISTENED! Had a chat about previous care, he seemed surprised that I was not on any treatment other than Bisphos.Mentioned the changes in sensation in my legs/feet (which I had told previous Onc about in September)- he said he has zero tolerance for such things so I was admitted for mri which showed tumour very close to cord in neck! FFS! That's a bit high to affect my lower limbs tho so more questions next week. Had rads soon after that evening - made the radiotherapist late home, had another blast today, having 3 more then chemo again - he wants to go in hard, none of this give up faffing as per my original Onc - but look at the time she's wasted. Am now home after horrendous night in EAU, strict instructions not to do ANYTHING, can't drive. Son and daughter coming this w/e. We are going to have a difficult conversation, shed some tears no doubt, then put it aside so that we can live whatever life is left to live. I am practical so want things sorted, I am realistic so know that a miracle is not going to happen but all not lost either. But things have progressed quickly and progressed a long way. Having another CT arranged so new Onc is up to date.
Moral of the story - trust your instincts. Get copies of all letters and reports. Ask, ask ask questions, challenge anything you don't understand or are unhappy with, ask for 2nd opinion sooner rather than later. And s*d to anyone who gets offended if you don't trust implicity what they are saying about YOUR life!
Wish me luck. And best wishes to everyone on here - you are fantastic people. Sharing experiences good and bad is so helpful. Forgive my repetion on the Bone Mets thread. Just wanted to share with all those who responded to me.
I'm really pleased you are going for second opinion and even though it's a bit of a journey the Marsden is one of the best so hope you get an appt soon, let us know how it goes. You at least will know you did your best and hopefully the Marsden will have some options for you, they often know of trials etc, anyway, fingers crossed for you.
Linda, sorry you're still waiting to hear but it can take a while as they are busy and popular! Hope appt comes through soon xx
so pleased you are getting a referral to the Royal Marsde.As you say at least it is a positive step and you will feel you have explored all possibities, and maybe other treatments could be a option.
I am waiting to hear about my referral to the Royal Marsden,I asked for one as I felt I was being written off and my wishes ignored,so never know maybe will see you there.
Take care of yourself meanwhile and hope you do not have to wait too long for a appointment.
Just reading through all the posts and while I'm at the beginning of the whole treatment thing (diagnosed in June with primary and secondaries in liver, lung and spine diagnosed at the same time and just about to have my third FEC tomorow - yuk!) just wanted to echo all the positive sentiments from the fab women who post on the forum.
Like you, I was pretty scared to dip a toe into the secondaries forum, but there is a lot of positve stuff and a huge amount of knowledge and experience floating around there so I'd encourage you to have a look.
Like you I'm a nurse and being treated at the hosiptal where I work. Being in the business has its positives and negatives but experience has shown me that being nicely stroppy and a bit pushy always gets results! Hope the Marsden goes OK for you. We're rooting for you. Lx
Morning all. Just to let you know that my GP has referred me to the Royal Marsden for second opinion. It'll be a bit of a trek, but I will feel as if I have explored all avenues. Thanks, as ever, for support. x
Good luck with scans/results!
Happyfeet, I echo all the others, do ask to see someone else for second opinion preferably from a large specialist cancer unit.Best wishes.
Hi, Aromasin didn't work for me either, nearly 4 years ago. I have (at the time of typing this) a very good quality of life on chemo. I have no bone pain whatsoever. I was diagnosed stage 4 from the beginning in 2003 (it's all in my profile)...I had put all my eggs into my hormonal basket and I felt life was over, or at least my quality of life was over when I was told it would only be pro-active chemo from now on. This is chemo to keep me alive for as long as possible, to control my mets, it's not only for pain relief as I wasn't in any pain before chemo but I had some progression and rising tumour markers. I agree with others about getting a 2nd opinion. Life can get better. I now know, have met, others who are living well (and long) with chemo. Take Care..x
I agree with what the others have said on here since your posting about further treatment. It does seem that the hormone therapy you've had so far isn't quite holding your mets a t bay but as Liz says above her one has a different the on this than yours does. Maybe it is worth a second opinion if you feel she is too gloom and doom? Also there are other hormone treatments if I remember rightly, Faslodex (sp) and Megace (these may be the same thing, sorry if that's the case) I think these work on the PR hormones rather than ER so I don't know how PR +ve you are and if they'd help. Hope you do get something sorted though and you're not left in limbo which seems to have happened. We're here to support and help you so ask as many questions as you need, I'm sure one of us will have had some experience. Good Luck
ps Good Luck Liz with your scans on Tuesday - or more importantly when you get the results! I've got a CT scan in a couple of weeks and am also hoping for good news but, as you've said, taking it as it comes 🙂 x
Happyfeet - I agree with the others saying ask for a second opinion. Even if they say the same thing, at least you've taken away that niggling doubt of some other treatment being possible if you see what I mean.
I have had bone mets since orig diagnosis July 07 and I too had chemo first. Was on tamoxifen originally as I am 100% ER and PR+ but side effects were so awful they swopped me to zoladex and arimidex in Sept 08. Late last year I had some spread in my spine that had gone quickly in approx 4 months. Turned out the vertebra was collapsing because of the cancer and pressing on nerves and muscles. I had a one-off rads blast that sorted that out. I also have zometa (zoledronic acid) to help my bones.
I asked my onc if this spread meant the arimidex wasn't working but she said no, it didn't at the mo and I will stay on it as long as it holds the cancer from spreading too much. Then we'll look at other things like more rads, cementing the spine, spinal surgery etc before chemo again. She's very positive and that is of course great for me.
I have my next bone scan on Tues with results the following week and whilst I am a little concerned because I've had a few more aches recently, I'll take it as it comes. I retired early aged 43 and am having the time of my life while I can. Hope you can too - get another opinion or two.
Thank you all for your comments - they have really helped me and spurred me on. If I hadn't had my friend (who's a nurse) and my husband with me at these appts I would think I had misheard my Onc but I haven't, she is so gloomy about it all. I have walked my dogs and spoken to the BCN, feeling a bit calmer now. I have decided to ask for a second opinion - fast. BCN explained a bit more - said as I've had Arimidex then Exemestane and still got bone mets they aren't working so no point carrying on.I had chemo before surgery and was in a trial so she said I've had the most effective ones and they haven't worked. Tumour markers - my Onc said this would be the only way of monitoring progression - seems this might not be the case? I am a nurse so ask lots of questions and can understand all the medical terminology but this is all new to me - I stayed away from the secondary threads whilst having treatment -too scary to read otherwise. You really are a fantastic group of people - thank you for pulling me out of the doldrums and giving me back some hope.
ps yes am on Ibandronic acid - she got that right!
Hi again happyfeet,
Sorry to hear about your latest news.
Don't know why your onc is so negative about it. I have had extensive bone mets for over 2 years now and liver mets for over 1 year. I've tried 2 hormonal treatments (neither worked for very long) and is now on my 3rd chemo and I have never been written off or told I've got just a year left.
Only recently, I had max dose of rads to spine to relieve pain and kill off the cancer cells. It worked very well. I couldn't have rads to my sternum because I have had it before (and yes, it came back!). Taken into consideration of further progression elsewhere, my onc has decided to put me back on chemo (3rd time). The pain has gone completely just after one cycle!! So, it does work for pain relief, but it's not JUST for pain relief because chemo DOES kill off cancer cells and both my onc and I are expecting the tumour maker to go down. (my lowest before this chemo was 7, within less than a year, it has risen to 53, more than 7 times.) And yes, I'm on the very important drug for bone mets, zometa (bisrophates mentioned by linda).
Just a final point Happyfeet, if you haven't been sleeping well, that will contribute towards your tiredness. If your pain is keeping you awake, it's important to get that sorted soon. Pain is also a constant remainder of BC and can make you very frightened at times. Onc is not a mind reader, so it's important you tell him/her how you feel and what you want from him/her and be assertive and demanding (I've learnt not to be too shy!!). If he/she doesn't co-operate, don't be afraid to fire him/her and seek a second opinion.
Take care Happyfeet. If you need anything, feel free to ask or give the helpline a ring. I hope you get some sort of treatment going soon. xxx
I was totally stunned when I read your post.I am not surprised you reacted the way you did..I too do not understand your treatment plan.I have exstensive bone mets(spine,hip,pelvis,ribcage),spread to axilla and a 50/50 possibility I had lung mets.I had chemo for the lung mets(now not visible on scan),rads to the spine and the axilla and now on bisrophates and femera as er+.I also take co-codemol and diclophenac for the bone pain, and have been offered stronger morphine based meds if and when I feel the need to go that way.Sorry do not understand tumour markers as my onc always said they were too unreliable so did not have mine tested.
I really think you should ask for a second opinion NOW TODAY!!
I am currently unhappy with my treatment plan because I want the mass in the axilla removed surgically but it is not standard treatment for secondary patients.I have asked for a referral to the Royal Marsden because I feel they take a more agressive approach.They are also ahead of the game for trials.Maybe you can ask if there is a trial that is suitable?
I know you are really shellshocked at the moment but please don't give up hope and start being kind to yourself.Sorry I cannot help much as I do not understand your treatment plan bur sending a cyber hug and hope someone out there can offer more help.take care.
Happyfeet, this isn't it at all. I'm rather unconvinced by your oncologist - chemo to relieve bone met pain? It's normally radiotherapy. I think you really really need a second opinion. If I remember right, you have extensive bone mets but lungs and liver are clear? Have they offered you bisphosphonates? If not please find a different oncologist! I'm serious about this, I've never heard such bad management of bone mets.
I know you feel devastated and sad right now but this is not it.
Sorry guys - haven't slept a wink, am so shattered. Is this how it goes then? I feel written off,no further treatment except chemo for pain relief should I need it (I don't at the mo in fact as so many people keep telling me - "you look so well") I was full of hope reading about others with bone mets and even secondaries elsewhere still receiving treatment and having a half-decent life. The Oncologist said the likelihood of me surviving for more than a year had "probably changed somewhat". I asked her that question as I'm trying to sort out pension + other benefits which have "special rules"
Oh dear - thank you to all those who have listened and responded.
we haven't been in touch before but I've read lots of your posts. just read this and wanted to say I'm sorry you haven't had good news and am thinking of you. Cant imagine how you must be feeling right now. I really hope your medical team offer you treatment works for you and that like AnneS you have stability at some point soon.
Jeez I really hope I haven't said anything inappropriate or thoughtless - I'm so conscious of assuming I know what others are feeling when our experiences can be so different.
Thinking of you and sending you a big hug.
Ooohh, it was bad news. Tumour markers doubled, Aromasin not working so advised to stop. What what WHAT now then??? .... Nothing. Chemo on standby if required to alleviate symptoms/pain. Tests/ monitoring/follow-up.... well, can do "as and when" required. I feel well and truly written off. OMG - what do I tell my children (grown ups but ...) Thats it then. Bugger.
Hi Happyfeet, just seen this thread and wanted to give you a big hug and say you articulated so well the similar feelings of shock,anger,panic and fear and being out of control that I too felt in Feb 08 when I was diagnosed with lung and collarbone secondaries.
I have now been stable and scans showing no evidence of disease since Nov 08 and my latest clear results were last night. Although every day brings its challenges and side effects on the Arimidex and Zoladex I have learned (it took time!)to live for the moment and have lots of short-term goals and nice things to do all the time. I never dreamed back then that I would ever feel happy or in control again or that I'd be coming up to 3 years of stability with the disease. I just wanted to share that with you and hope the same for you. I began making funeral plans,etc. but left them as present life got in the way and I just enjoy making the most of whatever time I have.Writing down your feelings is very therapeutic and I thought your writing was so well put.Being out of control is the worst feeling and time does help.
Keep posting. Thinking of you with your appointment today. I found it helpful not to deal with too many issues at once - and just in small bite-size chunks and to take time to come to terms with things gradually.
Thanks Tina - hope you are able to enjoy your retirement from the dear ol' NHS. I know I need to leave now but it is quite something coming to terms with it. Might pm you at some stage.
First of all, good luck for the appointment. Hopefully you'll have some good news and a plan which will put you a little back in control of your life.
Secondly, as I'm sure you're already aware, your manager has broken confidentiality!!!! I'd be furious about this! I'd also report it and drop her in it but only you know how you feel about it.
Hope you'll let us know how the appointment goes.
Morning all! Have appt with Oncologist this afternoon to find out results of blood tests - tumour markers etc, then will have some idea if my bone mets are being held back, or if not, what's the next step. Am terrified. Would like to have some grasp of the reins, I hate feeling so out of control of my life.
Saw my manager yesterday (I am a nurse). I was furious to find he has told the locum nurse all about me including my application for ill-health retirement. Now, I know they will need to fill my post at some point but this nurse has wanted my job since I was diagnosed in 2009 and has already asked if she can have it now! Talk about the vultures circling!
Best wishes to all on here especially those having tough times, ops etc. Must join you on the Bone mets thread at some point. Will let you know what news I get today.
Thanks again for your supportive comments. Am so sorry to read of those who have had further progression - that is the scary bit, along with the seemingly inevitable treatments and other interventions (ops.) I had my blood test yesterday for tumour markers - 3 months now since changing from Arimidex to Aromasin so will see if its having any effect - the way I feel physically, I suspect not. Have appts next week with counsellor, manager at work re ill health retirement then surgeon and Oncologist on Thursday.I will then decide on whether to find a second opinion or not. Seem to be shifting a lot of paperwork around getting nowhere with it - and I used to be so organised. I am doing datf things too (good job I'm not at work) worry that it's brain mets not stress. Oh dear. Anyway, some good news - my son got engaged last w/e so we are off to see him and celebrate on Saturday - he's had health problems of his own (cancer) but seems to have come through his troubles (fingers tightly crossed). Best wishes everyone - I wish none of us was having to cope with this but hearing how others do so gives me strength to face up to it. x
Oh Happyfeet, you've had one heck of a time with the misdiagnosis. However, as already said by others, bone mets (even widespread ones) can often be controlled for many years - mine were very well managed for five years, I carried on working as a midwife, travelled lots and had a wonderful normal life. I've only just been diagnosed with liver and meningeal mets so things have changed now - but I only retire from the NHS today.
I agree with Nicky that a second opinion is a good idea, I got one from the Royal Marsden as I lost faith in my oncologist temporarily - and they thought his management was fabulous. Feel free to pm me if you need to, about retirement or anything. Sending you virtual hugs x
No wonder you needed to let off steam! It all sounds very badly managed to say the least and no wonder you are planning all those things. However do have a look at the bone mets thread, where you will find all of us bone mets ladies. From what I can tell you have been dx with extensive bone mets but no other organ involvement? If so there ARE many treatments available and although you didn't ever expect to be back here with BC let alone secondary BC it is the right place to find information and support. It sounds like you had a bad time on here first time around so I really hope that you can find all the supportive people on here who can help you. I have now had bone mets for 3 and a half years and went throughout exactly the same feelings that you've listed. However after an initial treatment with chemo I now have a pretty 'normal' life, most days I forget I've even got mets. There are also many ladies on here who were diagnosed with extensive bone mets either from the beginning or at their secondary dx and are still going strong after many years, mostly with fairly non-intrusive treatment. I hope you can get some support also from other places if you need to like MacMillan and also look at a second opinion if you have lost faith in your team?
Good luck and hope the dark days get fewer and you get a treatment plan in place.
So sorry to read your experience. Scared by the diagnosis, but especially angry at the initial misdiagnosis.
I've got dragged back into the reality "I have secondary cancer" a few times when I was trying to get on with my "normal" life. And yes, sometimes it just seems that when we need help the most, NOBODY is around!!! You did the right thing in coming back to the forum (after the nastiness you've unfortunately experienced). It always helps just to write your feelings down and get it out of your system.
Hope you have a good sleep tonight and wake up to a better day tomorrow. xxx
Sending you a hug. xxx
Oh Happyfeet, you've every right to be angry at this b****y disease. To be told that after u believe things are going ok must have been so devastating for u. U do seem overwhelmed by it all & it must be so hard for u to deal with. I don't know what to say but am sending u big (((hugs)). Keep letting off steam on here, we'll all be here to listen, take care xx
Oh Happyfeat , xxx , sending you a scottish cuddle !!!
I agree with you , its s*** and you go on and be angry .You have every bl**** right to be .
I don't know what to say to you that will really help , don't want to be patronising by saying the wrong thing so i am really just bumping hoping that someone wise will come along with the right words that will help you.
But i am a good listener so rant away , it will help get it out.
Thinking of you , take care
I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00pm and Saturday 9.00 to 2.00pm.
Best wishes Sam, BCC Facilitator
You are having a tough time. I am sending you the biggest hugg as I know you could use it. I know this is a cliche but stay strong and focussed...enjoy every minute, that's what I try to do every single day. I feel you are just so overwhelmed that you just don't know which way to turn. Sending lots of love your way. xxxxx
Thanks in advance to you wonderful ladies with problems of your own who find the time to support people like me.I hope I have reciprocated in the past (but have changed my username now, due to nastiness even on a site like this one)
Spinning too many plates at the mo, most of them crashing. Primary BC 2009, did the works (chemo,mast,rads), went back to work for a year, diagnosed with extensive bone mets in June 2011 after months of to-ing and fro-ing to Oncologist with pain and symptoms. Told bone scan ok Nov 2010, told CT of lungs and liver ok (but was unreported) June 2011 - sent away to get on with life, skip skip... called back within the week when Onc did a big slump then sorry sorry - extensive bone mets. Huh? My head is screwed. I cannot believe it. Lost confidence in scans/tests/Onc. Prognosis - "years" or "months". Living in fear of "an event" (spinal fracture? I feel so vulnerable now)
So - plates spinning are : application for ill health retirement (am a nurse, can't cope): funeral arrangements!: getting house in order ie paperwork;seeing people/friends who didn't give a t**s when I had bc first time ( the usual, you'll be fine etc); memory boxes for kids, knitting bonnets etc (grown up, wont meet the grandkids). Dealing with assumptions - world cruise (no) run marathons (no) - I want to spend time with those I love.
Angry ++++ at Oncologist who, I believe, missed signs of 2nds on bone scan six months before yet says it would not have made any difference now.I don't believe her.
I got cancer, I did my treatment, I got back to work and was getting on with my life ... then the big hand came and plucked me back to the cancer-belt again. I don't like it. I can't see a way off this time. Its all a mind-set I know, don't give in, think friggin positive blah blah.
This isn't a big "poor me" oh no,I read all your posts girls and admire you for geting on with your roll of the dice. Tis hard tho eh? Got onto the live chat late tonight - then it "discontinued". The MacMillan line today was too busy to get someone to speak to me due to bank holidays. I understand - too many of us with blo**y cancer. Now where is that crisis line, cos I need it!
Sorry guys, bad, bad day - know you've all had them.I wish all of you happiness and strength to deal with this sh***