hi all i cant believe that today is 1 year ago from completing my radiotherapy for breat cancer, and I have today been diagonised with primary lung and seconday lung and liver cancer it is terminal i am absoultely devasted. What i cant under stand is that why when you are diagonised with breast cancer they dont do a full body can then so they can see wether you have it any where else. I feel that i have gone through 12 months of hell with the breast cancer to then be dealt this blow. Is there any one else out there who has gone through the same - sending love to you alll xxxx
Hi, sending you hugs.
Yes I was diagnosed with secondaries in my Liver and lungs and maybe spine, after 6years of turning up for my annual checks and mammogram, and being told yes everything is fine…when obviously it wasn’t! I only found out because ai’d gone to my GO because of a rhinitis cough and she sent me for a chest X-ray to give me peace of mind!
I too believe that a whole body scan should be part and parcel of care for primary breast cancer, because assumptions are made about whether or not is has spread, even through you may have had the standard treatments, surgery, chemo, radiotherapy. I don’t know how long mine has been lurking there growing away, quite a while ai think, given the spread in my liver. When asked, the onc say oh we don’t do a CT scan as standard because of the radiation risk… so it’s ok to have mammon’s on one remaining breast which really tell nothing, and then have to have three CT scans in six months to plot the spread of secondaries is it? That’s just not logical risk assessment to me.
try not to look at your diagnosis as terminal. Yes at the moment there is no “cure” for secondary BC BUT lots of different treatments and research and new treatments coming along all the time. So it’s life shortening, but we never know what is on the horizon that will give extra time, relief, etc.
Hello magicmaria,
Yes it’s terrible to be told isn’t it. I was in shock for so long after I was told I have mets throughout both lungs and liver and other places too.
I don’t think I’ve come to terms with it as yet, but I’m learning to live with it. It took me ages to realise that there might even be some long time between diagnosis and death. At first my thoughts always turned to the “death” scenario and I went into great bouts of extreme panic! Yes. It was devastating!
But, it’s now nearly 8 years since diagnosis and I remain reasonably fit and well. I believe that there are more and more people living with it rather than dying of it.
I have accepted (demanded) all the medical treatment I can, and I have endeavoured to change to a healthy lifestyle to support my treatment. And, so far so good.
It looks to me like this Breastcancercare web site is one of the more positive ones. I lijke that. And I am aiming to attend one of the meetings about “Living With” secondary breast cancer this Wednesday. I’ll let you know what it’s like 
In the meantime please be kind to yourself, and try to stay as positive as you can. Everyone’s journey is different and perhaps you’ll be sitting here typing in 8 years time having achieved loads? Nobody can tell what’s round the corner. And treatments are improving all the time. I look at it like “surfing on the wave of new treatments”…and, so far so good.
At the start of my journey I spent rather a lot of time lying on the floor howling and imagining all sorts of stuff that didn’t happen, when what I really needed to see that there was time to catch my breath. There certainly was for me and maybe there will be for you too, so don’t despair my friend.
xxxxx
Hi Maria, I am really shocked that someone has used the word terminal in your diagnosis. I prefer to think of it as living with, not dying from, cancer. Yes, it is a body blow, I get that, I really do. However, there are so many treatments now that I think we have to try to be positive and live the life we have to the full. I have lung mets which were discovered at my second ct scan in 2017. So I’d had the op, the chemo, the rads, then this. My Onco is a lovely positive man, and has inspired me to be the same. I’m on Letrozole and Palbociclib , which are not great, but I manage ok. During the last two years I have accessed lots of services through the cancer route, and also Maggies Place , which have helped me focus on what I can do, not what I can no longer do. I have never asked a question I didn’t want to hear the answer to…so no asking for prognosis, for me. I try to stay active with little ( tiny) walks and TaiChi . The meditation is a great help. I wish you all the luck in the world. Sending hugs. X
Was diagnosed in Dec 2016 with mamogram and biopsies . . Scans after showed mets in lung and liver and hips and breastbone. .liver one disappeared really quick …then heart failure n pulled from chemo … started back again. .then off…then back on herceptin injection …not working well so been on TDM1 since December and it was working really well. …then idiot/ genius oncologist said I’d never had a brain scan. … scanned Tuesday and he called Thursday and summoned me to barts Friday. …mri booked for Friday. .then hopefully targeted radiotherapy /cyberknife will be possible. … lost my driving licence. …and have always sworn radiotherapy would be over my dead body … really just ready to just run away in my car and see how far across Europe I get before they catch me or I crash off a mountain. …this tumour didn’t magically appear overnight …so I seriously don’t see a difference
I too have been through same as you. Had my first mammogram a year after original diagnosis for breast cancer,found another tiny lump, but my breathing was bad so also found secondaries in my lung. Given 6months with no treatment but maybe 2years on chemo tabs. havnt got that far yet, as had to have lung drain, which helped with breathing but only lasted one week, so now really struggling again and waiting for another drain. Really dont know if i can take much more.Seems oh so pointless to go through more chemo, after last years nightmare, to be told at the end of it, it hasnt worked. Think may just throw in the towel now and give in to this awful cancer . Thanks for listening .