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.
Hugs
Tina
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.
Linda xx
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
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!
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.
Liz
Hi Happyfeet
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
Nicky xx
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
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
Thanks Nicky - good luck with your scan too. It seems to be scan week or two at the mo! May we all have good outcomes.
Liz 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.
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
Hi Happyfeet,
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
Hi
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.
Linda xx
Happyfeet,
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
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.
xxx
HI Happyfeet.
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
Laurie x
Thanks Laurie and hope you get some more support at the Marsden. Keep us posted
x
hi happyfeet
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.
Take care
Lucinda xx
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