Hi everyone, I am posting to express my total frustration with this disease.
Every day there are ‘amazing breakthroughs’ in cancer treatment reported in the press, yet I will be well dead and buried before anything comes of any of them and they could benefit me.
Here I am, mets in lungs and liver, gently marinading in chemotherapy until I keel over and die.
I just cannot come to terms with the fact that there seems to be no alternative, specifically surgery? photodynamic therapy? ?? and that my case is hopeless. My onc is totally uncooperative when I suggest exploring any other route.
Chemo seems such a waste of time when at best it leaves a residual core of cancer that will grow again. Just postponing the inevitable.
Has anyone any had success with alternatives?
Specifically:
Liver I only have two or three small spots - why not a resection?
Lung - only one lung is affected, I know for a fact that lung cancer patients get by on one lung so why not me?
I am not expecting a cure here as I accept that cancer cells are probably spread throughout my body, just a bit more life and a bit more effort to consider other options.
Hi Ariadne, I can feel your frustration in your post.
Sorry beforehand if you have already tried any of the following…
A second opinion at a larger hospital with good cancer facilities, Christies or the Royal Marsden?..(if you don’t already attend either)
Make an appointment (through your GP or Onc) with a consultant who specialises in liver disease…and ditto with lung disease. I know the resection (from knowing friends who have had resection) can depend on the location of the mets.
Have you explored the possibility of Radio Frequency Ablation to the liver? link here, cancerhelp.org.uk/about-cancer/cancer-questions/radiofrequency-ablation
Change your Onc. At my hospital it’s such an easy procedure.
My experience, I have bone mets and had a hip replacement because of them 6 years ago. I’m under the care of both my oncology and my orthopaedic dept…this has worked well for me and the two depts communicate well and I feel I’m being watched over well and monitored very well. When I was first diagnosed I didn’t want to feel on the scrap heap…those dreaded words ‘palliative care’ sounded very wishy washy as though the NHS had already given up on me. I was wrong and have had very pro active treatment and monitoring which I believe has helped keep me here so far. New breakthroughs will be too late for me but I’m happy with my treatment…make some waves…x
Belinda…x
I remember when I was diagnosed with secondary spread being told I would only be receiving palliative care. The only compassionate thing said to me was that they would ensure I suffered no pain!
I got myself referred to the Royal Marsden by my GP. The Royal Marsden made my local hospital give me treatments that they wouldn’t otherwise have given me.
To survive as long as possible (I have lasted longer than median life expectancy after a diagnosis of secondary breast cancer) you have to do a lot of research by yourself, push for anything you think might help you and develop a tough skin because of all the health professionals you will be upsetting.
I got my hip replacement by turning up at A&E when my hip was particularly painful and became an emergency admission. The orthopedic team on duty that day said it wasn’t a question of would my hip fracture as when would it fracture and they’d prefer to replace it before the fracture in calm circumstances.
I agree with belinda and holeybones…you have to unfortunately fight for your life…and it means doing all you can by phoning hassling whatever it takes…dont feel bad about it.
When I first diagnosed 6 1/2 yrs ago I was part of a newly formed young persons ‘boob’ group and there was 10 of us? well now i know at least 5 of those girls are no longer, yet i have had far more tumours and secondaries than any of them, (im not tryin to be heroic by any means as appreciate im exceptionally lucky) but had tumours in my sternum,recurrance in scar,t4 and l3 vertebrae, a tumour in each lung and 5 or so in my liver and yet im still relative fit and able…altho chemo (xeloda) is making me tired but otherwise i would be working 4 days a week! and i believe its down to fighting to be seen by my onc as soon as somethin is wrong, asking to see dr at the royal marsden (seen a chap 3 times each time has given me more advice and recommended more treatment than my local onc even tho they were good in themselves) arm yourself with the drs secretarys numbers and call direct thats what i do if i have a problem! shouldn be the case, but the girls ive lost from the original ‘boob’ group i believe didn fight their cause and suffered cos of that. I think you will find the majority of the ladies on this site, ie. debs in cornwall, belinda, dippy kate (late) are all very strong characters which is the right attitude to take to towards fightin bc, strong positive attitude, you have to get a grip and live and fight at the same time with this disease otherwise you end up being a statistic…
Well thanks, Zippy, Belinda and Holeybones, I am going to print off your comments and put them on my bedroom wall where I will not miss them. I suspect I got myself into this mess in the first place by being too compliant, understanding, nice and sweet, when faced with hopeless (read b---- awful) care at local hospital at time of primary diagnosis.
Yes, I feel hopeless in face of my very charming consultant and that I have been written off.
thanks, Ariadne xx
Hi I know exactly how you reel. I was diagnosed 2nd October this year with secondaries. Bone with a couple of microscopic spots on my liver which were too tiny to classify as anything. My oncologist is great and has referred me to an Orthopaedic Surgeon who in turn has referred me to a tumour unit at a specialist orthopaedic hospital. I plan to ask when I see my oncologist again about liver ablation for the microscopic spots. Whilst my oncologist hasn’t made me feel to be a hopeless case, although I have been told in no uncertain terms how serious, no cure etc. the McMillan nurse has made me feel a lost cause. When I mentioned my youngest daughter would be starting senior school next year and I hoped to see her settled I expected some reassurance but what I got was the comment to treat September 2010 as a goal. That has made me feel awful, I am struggling to accept the situation because apart from a pain in my leg (knee and shin not hip) I feel and look fantastic. All of my bloods are normal - tumour markers etc., - and my plan was/is to go on for years with mets. The last thing I need is anyone suggesting to me that September 2010 should be a goal!
I think knowledge is power and knowing what is available to all of us is really important. Through this website we can share our knowledge and experiences to make sure we get the best possible chance we can at having a fair crack at the whip. Di x
Hi again all, I only saw my Macmillan nurse once, a few weeks after my diagnosis. I think she meant well but she talked about all her other ‘ladies’ and I ended up feeling quite down after she’d gone, a cancer ‘victim’ so I didn’t bother to see her again. This was over 5 years ago.
I too believe shared knowledge is empowering and while I’m not sure if this has played a big part in my still being here I do at least feel I’m in some control. Not necessarily in control of the disease itself but I feel very lucky to have an Onc who I can discuss my treatment with, have some real input, make my own informed treatment choices. All this helps me feel I can still have a say in my future. And I have a future, I’ve not written myself off yet.
Good Luck Ariadne…I hope you can find some answers, make any changes that will help you.
x
Well Diane, 2010 just seems ridiculous to me. Obviously I do not know the details but on the face of it I believe that disease in bones has better prognosis than in vital organs. Despite that, I am just up to completing my fourth year since the secondary diagnosis and quite a few more chemos left to try yet.
Four years ago I never dreamed I would have survived so long. I just want more!
I hope lots of other ladies on this site will give you the same encouragement and more.
love, Ariadne xx
Hi Ariadne, Sorry I have no solutions for you. I just take whatever treatment is offered. I am on chemo just now and hoping to re-start my Biphosphonates soon and am seeing my Oncologist tomorrow to discuss. Apart from new drugs etc I think the biggest influence in my “being here” is the support I get from my husband. He knows when I am knackered and doesn’t ask, just gets cooking!..or whatever needs done. I first had BC in 1989 and was diagnosed with bone mets in 1999, in my spine, thorax, pelvis and ribs. But I really enjoy life and think it is important to listen to your body and rest when you need to. Unfortunatly I have been really tired recently and it has been wearing me down. So OH suggested going away for the weekend. The walks on the beaches, the fresh sea air, and just having a “change” has made a huge difference. So much so that I am off again tomorrow after I have seen my doctor that is! I hope you have a long life. I never thought for one minute that I would still be here. Love Val X
Hi everyone, can anyone suggest someone good at the Royal Marsden I can ask for a second opinion. Just cannot lie down and die without doing something.
thanks, Ariadne
Don’t know if this is helpful but I asked my consultant more or less the same question last week i.e. why can’t secondaries be removed like primaries?
The answer was that once the primary tumour has metastasised (broken away) into secondaries, no matter where these are currently growing be it in liver, bones, lung etc. there are almost defineatley other such cells “floating” around in the system which have not YET landed somewhere else.
Putting a person through aggressive treatment for secondaries which can be seen needs to be balanced against the liklihood/speed of those which can’t yet be seen just taking their place or growing somewhere else…
I’m in a similar position to you, with mets on liver and lung, dx’d July 2009. Sorry that I can’t add any useful advice but I’m still “learning”. These forums have been very useful! Despite having a determined attitude and refusing to be written off or have BCNs looking at me with tear filled eyes (grrr!), I feel very ignorant.
So no advice from this corner, but a huge amount of support being sent in your direction. Never give up fighting!
When I was first diagnosed with mets in the liver the hope was that I could have a liver resection (which is not normally offered). The liver surgeon I saw had some impressive figures in terms of a very few people still going strong 10+ years after surgery. Most didn’t live that long but a few did - that aggressive treatment for them did work. Unfortunately I couldn’t in the end have it done and RFA (which is far less aggressive/invasive) also wasn’t thought suitable because of the location of one of the tumours. But I have now had SIR spheres (SIRT) injected into the liver and I am waiting to see how that works for me - hardly any research available but I felt it was worth having done because I was running out of chemo options. Clearly it won’t help at all with any “seedlings” waiting to grow anywhere else but for the 2 1/2 years since my secondary dx, the cancer has “only” been in my liver (this was something they took into consideration when deciding whether this was suitable for me or not).
This sort of targeted treatment is used much more in other countries and I think opens up new possibilities for us here. I feel I have been offered what I have been offered because my onc has involved the liver team - interesting that you too, Belinda, are under the care of the orthopaedic dept as well as with the onc, and (like me) are happy with the treatment you have been offered. I would suggest, Ariadne, that you do seek a 2nd opinion from another onc or ask to be referred to a team specialising in the liver (or lung).
Thanks Kay and others for advice. I just feel oncs are taking easy way out - chemo us until we do not exist any more - without looking for alternatives that do not happen to be within their speciality. I feel that I have been written off and we ought to be demanding more.
But how to circumvent them and their laissez faire attitude is what perplexes me. Been fobbed off already by super charming onc who never quite manages to answer questions. Trying GP next for referral.
love to all , Ariadnexx
I wonder whether your oncologists might be almost as frustrated as you are? I’m sure they want to save our lives - why else would they be in the profession? But I’m fast learning that there is a prescribed “process” for just about everything that happens during treatment and funding is only available for treatments/drugs approved for that process. I expect that’s a very simplistic view of things but it seems there is very little room for creative thinking or inspired alternatives within the NHS?
I had a look on-line at the NICE guidelines for Breast Cancer treatment (warning - very long!) and ended up feeling like something on a conveyor belt. Short of being automated, the role of the consultant seems to be almost reduced to being - as you say - “charming” and then dishing out the treatment they feel best from a set list. I actually feel a little sorry for them!
But that shouldn’t stop pro-activity on our part for campaigning for newer treatments! I’ve just started to receive Disability Living Allowance (have advanced cancer)& have used some of it to start a standing order off to support Cancer Research UK hoping in some small way to help add to the list of approved treatments we could all benefit from! Stops some of the anger in me as I feel I’m doing something in a situation I otherise have no real control over.
Hi Haxted, the conveyor belt approach is exactly what I am complaining about. From constant reading of this site, I feel I have enough knowledge to tell onc myself what chemo comes next when current one fails. Might almost buy off the internet and do it at home with a bit of training in managing port etc.
Only hope is that by the time my grandchildren inherit this disease things might have moved on a bit.
love to all Ariadne xx
Hi everyone, I couldn’t agree more with Ariadne’s comments on 4th November, but do so sympathise with NHS oncologists as respondent pointed out. I wish I could be more assertive about treatments but I always seem to find out about things after the treatments rather than before they’re offered! Think I need to be better organised…
Do you know what I love about a thread like this? I love knowing that I am not the only one who has these thoughts and questions running through my head. It doesn’t happen all the time but when something new or unexpected comes up it gets my old mind going again. I personally find that if I know what the treatment ahead of me is, that I cope better. It is when there as doubts or problems or changes that my head drives me mad! So thanks girls for making me feel normal for feeling like this…for questioning everything…I am finishing this recent chemo regime this Thursday having started in April… I am going back on Biphosphonates and a new hormone drug for me, Letrozole. I have been on 3 other ones. And I am waiting for an appointment for a CT Scan. But although nothing is really “different” as far as diagnosis is concerned I feel more myself again. This b***dy disease can shake me up at times but at other times I cope majestically!!! Love to you all, love Val XXX
Hi, I hope you don’t mind me adding to this one. My Mum has secondaries in the liver, lungs, bone & now a lesion in the brain & has been in a hospice for 3 weeks.
Whilst initially, we felt reassured that the hospice was “looking after” her, now we feel quite differently. All they are doing is offering basic care such as washing, food, being put in & out of bed. She started Xeloda 3 weeks ago & now they are saying she is too poorly for chemo but they aren’t doing anything else. She has an appointment with an onc this week & there’s a possibility the doctors at the hospice might cancel it because “it may not be in her best interests to go”.
Well excuse me, but if nothing is done for her, then there’s only one way for her go & that’s to heaven!!! Mum wants nothing more than to receive treatment & become more mobile so that she can come home & that’s what we all want to.
It seems like the hospice is working to their own agenda, which has little or nothing to do with what Mum or we want. From a cosy, calm & comforting place, it now seems to us like it’s the Euthanasia Clinic! Also, their “loveliness” is wearing a bit thin as we just want to shout & scream at them to get off their **** & actually do something practical to help!!!
Sorry if this all sounds ungrateful & OTT. Feel so angry & frustrated at the moment.
xx