Hi Sarah
Thanks for starting this thread I have already posted on another thread where you were extremely helpful. I was dx with bc in feb2013 followed by right mx and clearance. Within weeks I was dx with small (less than 1cm) mets in the liver.Presently I am on chemo (Pertuzumab Herceptin and chemo). I really am sorry to meet such lovely people under such horrible circumstances but everyone on this site has been so helpful and I have to say I wouldnt of got this far without everyones kind words and knowledge.
Lemongrove I have followed many of your posts and you have so much knowledge and you help so many people.
Jen cant believe what you have been through I agree with others no way can they just dismiss this and expect you to walk away and forget about the last three years.
Angela
Thanks for the welcome Sara and hello to everyone else.
The difficult thing about all this is trying to be normal I have a wonderful family and a great oh I have not yet told anyone about mysecondaries (except my hubby and one really close friend) I am not sure what to say opening up here is great I did try on another site overseas I think I thought if it was not in the Uk it wasn’t real. Not sure I really wan’t many more to know. What have others done about this. I live in a small place and it was awful for a while because I wanted to avoid people. I am naturally friendly and it was really difficult for me.
thanks for the support I m great chatter but writing things down is sometimes very overwhelming.
Mara
Another double whammy here, dx initially feb 2011 with IDC and 6.5 lump in rhb then two weeks later wallop mets on both lungs. Since June 2011 my lung mets have been kept in a stable condition with no change on a concoction of tamoxifen/herceptin which I will probably be on forever. I don’t get any symptoms so far ocassionally a bit out of breath, its the emotional mental strain that gets too me. Since being dx I have chosen to change everything in my life I don’t drink or smoke (never did anyway) and drink a pint of organic green veg juice daily a long side a huge amount of supplements, its not for everyone but it works for me, I personally believe that what I’ve been doing has helped my body repair after the trauma of treatment and surgery. I live for the moment because thats all any of us with or without cancer can do. Sorry that we all have too meet under such horrible circumstances but glad to make your acquantinance anyway. I don’t come on here very much these days but if anyone wants a chat or anything at all please feel free to private message me I will respond. Sending you all lots of love and light.
sarah xx
Jeannie51, I’m glad you agree with me that cancer charities should be working to tighten up NICE guidelines. In my personal view the problem is that charities such as BCC are NICE stakeholders, and I feel this makes their relationship a bit too cosy. For instance BCC talk about being trusted partners, working with NICE. That’s OK, but what if they need to work against NICE when their policies and guidelines harm cancer patients ?
This is not to criticise the good work that BCC do in other areas (notably information lines, support and this forum), and neither are they alone as charities with links to Government. I notice that even Cancer Research will be managing the Emergency Radiotherapy Fund on behalf of the Government (if anything is liable to compromise their position I would have thought that will).
BCC have commented in a thread I started about this issue that the NICE guidelines referred to earlier ( i,e. which advise doctors against performing secondary biopsies), are supported by medical evidence. That may have been true when formulated, but these guidelines are now in my view outdated.
Being a NICE stakeholder is not necessarily wrong, because it allows charities to be involved in decision making, but like any relationship there has to be boundaries, and a dividing line. When it becomes apparent that a NICE guideline is working against patients, and is outdated, charities should stop working with NICE , and start working against them.
WOW, Lemongrove, you are spot on. I’ve a busy day ahead but I just wanted to give you my support. As long as things go well for people, they will be unaware of how much denial, bureaucracy and “closing of the ranks” go on within the system. I also appreciate the work BCC, Breakthrough and others do but when the comes to the guidelines (SIGN and NICE) and doing something that would be seen as going against the establishment - I wanted to get help with campaigning for better GP training but no-one seemed interested. Why rock the boat with GPs? I had no intention of taking my case to law but the denial I have had within the system left me with no option.
Once again, thank you for your response.
Jeannie51
I was diagnosed with secondaries from the outset (September). I have spread to uterus, ovaries, spine, pelvis, sacrum , ribs and collarbone. My mx was cancelled when secondaries were discovered. I was diagnosed with breast cysts for a number of years before cancer dianosis. Invasive lobular carcinoma which did not show up in mammograms and I was as recently as April given the all clear even though I presented with lump at routine mammogram. My lump has changed in the past two weeks and has moved up leaving my breast misshapen. There is no breast tissue left that I can feel just loose skin in the lower breast and tight shiny skin in the upper. I was told at oncology appointment last week that letrozole had probably stopped working as tumour markers were slightly raised. I had mri last week and was due to start cap today. When attending unit for zolodronic acid infusion I was told chemo cancelled as could not be justified due to lump showing decrease in mri to 26mm. It is clear to see even through my clothes that is four or five times that size. I have phoned my gp to try and get me my oncology appointment which I have been told would now not happen. I have cheerily went through diagnosis and treatment up until today and I am now angries than I have ever been in my life. I am so frustrated.
June
Oh dear June, you sound as though you could use someone to talk to? Helpline are open now and will be only too happy to listen, 0808 800 6000, give then a call ,it’s free to use and they’re here to support you.
Take care,
Jo, Facilitator
Thanks Jo. I have to keep my line open for GP call just now but I will phone.
June
Hi doodlecat
just wanted to say Hi and to let you that your not on your own. I think there is a chat tonight. I have not been there
yet because I am new to the boards.
Hope you got some help from your GP.
mara
Thanks Mara, Might pop on there tonight although my laptop is a bit dodgy. Normally use my tablet but I don’t think I can use it on the live webchat. GP phoned and if I do not have appointment with onc by Friday he is going to chase for me. I feel really bad moaning about this but I really do feel let down. Apologies for all my ranting.
Jeannie51, I am going to the CAB (Citizens’ Advice) to get information about my position and legal aid, if I decide to go down the legal route. Meanwhile I’ve got my letter to complete! I’m going to stress, in my formal letter to the hospital, some of the things Lemongrove mentioned - particularly that there should have been more thorough and earlier investigation of bone mets d/g, when mets were first questioned. It will take some time, and I will let you know what happens. Thanks for all your help.
Jen.
P.S. Just a bit more from my medical notes. I had a bone scan before a rad. treatment to hip and a CT scan afterwards (Apr/June 2011). This hip pain now seems to be down to bursitis. Notes say : ‘On balance the lack of progression of these small sclerotic foci and a largely normal bone scan would indicate that these are likely to represent benign sclerotic bone islands of the osteopoikilosis type bone dysplasia’.
2nd. rads given to hip & sacrum in Apr. 2012. Notes say: ‘Appearances are atypical but probably represent extensive bony metastatic disease although the possibility of multiple bone islands should also be considered’.
Dear Jen. I think you are doing the right thing in mentioning the lack of thoroughness and earlier investigation. I’m sure your psychological state has taken a battering. Correct me if I’m wrong here but this was the side of me that suffered badly. Sometimes it hurts even more than my cancer diagnosis. However, you must try not to over stress yourself. I feel the best outcome for you would be if the hospital acknowledges they made mistakes. Your notes are quite detailed and I feel a medical negligence person would be very interested in your notes of Apr 2012. In my case, they have denied everything which makes it so much more difficult. Keep positive and try not to get swallowed up with it all. Feel free to send me a private message. I feel I have said enough in the open and as I have said before, I have to be very careful what I say particularly on legal matters.
Wishing you lots of strength to fight on.
Jeannie
PS You might like to have a look at the NICE guidelines. If there is anything helpful there that you could quote in your letter so much the better.
Dear Jeannie, that’s all I want - for the hospital to acknowledge mistakes.
I need to address the hospital errors, but put it all in a separate box, because you are right about the battered psychological state! Recent treatment on top of learning about the d/g last October has left me feeling very weak, so I have to make sure that past BC things don’t get me down. You mustn’t stress yourself either. 
Thanks for your help - I will take a look at NICE guidelines.
Jen
Dear Jen. You made me smile - I live in constant stress because of my siutation. I feel I need to fight on in order to protect the women that come after me - this is not just for myself. Give yourself a pat in the back that you are doing something about it. You will feel a little better after you have written to the hospital. Hopefully, they will learn from what has happened and be honest with you. Enjoy your week-end. Do keep me posted.
Jeannie
Hi there,
This is a message for SP who started the thread. It was great to read youpst ost. On 9th April I was diagnosed with breast cancer with both lung and liver mets. I have had the first two of six FEC T chemo sessions and have been looking for a thread or someone who could give me something to aspire to and who I could identify with. Most other people don’t have the massive shock of Stage IV and lung and liver mets. It has shocked me to the core but I am trying to get myself together to fight this and to get through the chemo. I don’t know how you would feel about messaging or starting another thread because this thread seems to be all about people who are taking legal action? It would be nice to have someone to swap stories with, although I can see that I wouldn’t have as much to offer in advice obviously. Let me know if you would be happy to do that. Many thanks.
Katherine
Katherine2701, I’m really sorry to read about your diagnosis, and hope you can find some help. information and support from this site and this thread. I think the thread has gone slightly off on a tangent, but I guess when discussing the diagnosis of secondary cancer the issue of misdiagnosis and legal matters are going to crop up, because sometimes people have secondary cancer because their primary was missed, or treated inappropriately.
I do though think that the issue of being diagnosed with secondary cancer when the cancer was in fact a primary deserves it’s own thread.
Hi Katherine2701, I have already posted on this thread and have found this site extremely helpful and comforting. I was dx with breast cancer to the right breast in feb 2013. Had right breast mx and node clearance. Within weeks dx and because I was entering a trial I had to have all the scans which is when they found the cancer had spread to the liver. They say it is very small (less than 1cm) but non the less it is there. I had no symptons and still don’t. I am about to have my second chemo along with Herceptin and Pertuzumab and so far only suffered a bad rash and about 3 days of feeling like I had flu coming. I do have hope because there are plenty of ladies out there that do well and are still doing well. I hope there are many treatments open to me yet but I hope my Pertuzumab and Herceptin work for a long time, fingers crossed. I am still quite new to all this but if there is anything I can help with you can message me. Take care Angela xxx
Hi Angela (elliedog)
Your post raises some interesting issues. No need to answer by posting a reply on this public forum, but I do wonder how you felt about having signed up for the clinical trial, gone for additional scans, and the single liver met was found… I myself am very positive about the importance of clinical trials, though the two drug trials I participated in didn’t benefit me at all.
It was the surgeon who would have done my WLE who sent me for scans including the nuclear medicine bone scan… I think he suspected secondaries then.
I have had excellent monitoring during the almost 7 years since dx.
Just wondering, what chemo are you on now?
It would be good if legal help/misdiagnosed discussions could also take place under their own thread - if a thread is the same thing as a heading. Ladies asked for this at least 5 years ago but it was never granted. I won’t be saying anything further on the legal side but hope what I have said is helpful to anyone else thinking of travelling this route.
Wishing you all well.
Jeannie51
Hello Katherine2701
You’re not alone, you’ll see a post from Angela (elliedog) above and a couple of others earlier in the thread. There are more too, you’ll find some people commenting on the liver & bone mets thread. I often join the secondaries live chat on a Tues night and you’re welcome to message me.
Hang in there.
Sarah