Hi, I’ve not been on here very long but I was wondering if anybody else’s initial diagnosis has been stage 4? I was diagnosed a couple of weeks ago with BC and have just had the results of the CAT and bone scan with Mets present in my spine, rib and collarbone. Although my consultant hasn’t categorically stated that it is stage 4, am I right in assuming it is automatically stage four if beyond your lymph nodes?
I haven’t started treatment yet as pathology not long completed. I know that it now puts me on a different treatment pathway - therapeutic rather than cure - though I am still going ahead with, chemo, surgery, RT. Is it generally just less aggressive intervention at stage 4?
Thanks
At first when I got dianoised over 8 years ago with stage 4 breast cancer and bone mets at the same time like you at distraught.
I had mastectomy in September 2009 then had CT scans and bone scan that is when it was discovered had extensive bone mets. Had chemo and Rads which finished in Aprl 2010. Had reconstruction in 2012.
Found this forum by chance it has been a life saver. There is alot of treatments out there now so dont give up.
Treatment for stage 4 BC is usually less aggressive but can still be very effective. If BC has spread to spine it is classified as stage 4. I was diagnosed with primary bc, commenced neoadjuvent chemo and midway scan after 3rd chemo showed extensive spine/pelvic mets. Completed further 3 rounds of chemo at reduced dose, no surgery or RT, then put on Aromatase Inhibitor and IV bone strengthner. That was 6 years ago and I am still doing well. No cure (as yet!) but lots of effective treatments available to manage this almost like a chronic disease.
Your oncologist will taylor your treatment plan according to your pathology. All the very best to you.
I don’t think so… I, too, was diagnosed primary and then secondary (in liver) within 10 days in spring 2015. I was really worried that surgery appeared to be off the table, as I went straight to chemo (after 7 weeks of tests…) and only realised after the 6 courses of Docetaxol that the lump and mets responded so well I didn’t have anything left to take out! I had surgery (full node exision) last December followed by radiotherapy after the cancer grew in my axilla. We never figured out why… but I continue to receive treatment every 3 weeks, and I have heard those lovely words “No evidence of active disease” for the past 9 months. I am well…and I sincerely hope you will be, too. My only advice is, always ask questions.
Thanks for your replies, it’s good to hear that you’re all doing well. I’m desperate to start some form of treatment but I have to have a PET scan before they will book the appointment in. The waiting feels worse than receiving the diagnosis.
My initial diagnosis was stage 4 …2 1/2 years ago…I had lumpectomy, axillary clear out, 6 months chemo. and a month of daily radio. I’m on monthly Denosumab injections and daily Letrozole. I’ve just had the ‘no new mets’ a few days ago. I still have quite a few aches and pains…arthritis related…but I’m alive and relatively well…
Going back, I was shocked at being diagnosed at stage 4…but ‘they’ will tailor make your treatment for you…a day at a time…
Juma … I just want to send you love and solidarity. I, too, was ‘straight to Stage 4’. In September, I was absolutely fine, with no symptoms and just found a lump in my neck … then, scans and biopsies later, here I am with a diagnosis of BC, secondary in my bones and various lymph glands. I am going for a second set of scans this week - as I now have symptoms and the oncologist doesn’t know if it’s that my treatment (letrozole, palbociclib, denosumab) is stirring things up, or the cancer is getting worse. To be honest, I find it almost impossible to control my fear. However, I’ve just started going to a Macmillan counsellor and am planning to go to a support group. Sorry … I don’t want to make things worse my sharing my own situation … I just want to say that I’m thinking of you xx
You are not alone. .always someone here to offer you kindness and support. .its a very scary illness as it’s so unpredictable. …I find family and friends just think I pop a pill daily and I’m going to be fine ! I get asked when do I finish my treatment or when I’m going to stop using my walking stick ?
Xxx
Funny face …you are so right about the comments. .the worst ones are :
Stay positive as your family need you
Or
The cancer drugs are so good these days …you will be fine. …
I expect there are loads more comments we have had and feel like screaming !!
Thanks, everyone. Having only been diagnosed in September and been completely fine until then, I find the severity and unknown of my disease and situation pretty much impossible to get my head round … not knowing if any symptom I now feel means ‘this is it’ and I’ll be checking into the hospice or whether it’s about adapting to a new kind of life and having a few or many years to go. I have no idea how you’re supposed to cope with that. I know some things can help - like I’m having a new set of scans done this week - but, even so, the unknown is just too much. And, yes, people have the best possible intentions, but don’t always help. The ‘breast cancer is one of the best cancers to get’ and ‘I have a friend who had breast cancer [stage 1] 20 years ago and she’s fine’ comments. I absolutely don’t want to become someone who isn’t empathetic to other people’s diagnoses and difficult circumstances … but I also need some understanding that I’ve been dealt a particularly harsh hand of life’s cards right now and I need people to listen and understand without me having to repeat horrendous information time and again. xxx
Hi, it’s such a support to read these replies - and I have to say comforting to hear your cancer comments - I’m so glad it’s not just me! Only diagnosed a few weeks but I’ve had several “stay positive, it’s half the battle” and, my favourite “you’ve got to fight it”. Really, with what specifically?? Though, I know it is kindly meant so I nod and smile.
I had my PET scan which confirmed bones Mets, more extensive than those that showed up on the CT but at least I’ve started treatment now (capecitabine, surgery and rads off the menu for now). I’ve also got a second opinion appointment on Thursday which I think will give me some
Peace.
SML, I hope things settle once you’ve had you scans. I did feel better just getting past them. Best of luck with the result xx
I agree … it means the world to me to read these comments and sense the solidarity.
Juma - sending you love and support. I sense that these early days of diagnosis bring their particular challenges. Apart from anything else, I feel plunged into a world of unknown vocabulary and processes - within which it’s incredibly difficult to have a sense of control. Everyone is different and needs different things, but, for me, it will help to have the new scans done and have more information, whether good or bad - as my own mind is not my best friend right now. Thinking of your.
I have my second opinion appointment today and I’m going fully armed with a long list of questions now I will had time to get my head around the terminology. There are so many things I didn’t think to ask at the time - too much of a shock I suppose.
Hello, I was initially diagnosed in August of this year. After a long 9 week wait I started chemo, I had a few tumours in my breast and lymph node involvement. I had a spot on my liver that was less than 1cm so diagnostically they did not know for sure what it was.
I recently had my half way scans for chemo and the chemo is working wonderfully on my breast, one tumour away altogether and the big one shrinking in all directions. Sadly though the liver spot has also shrunk by 2mm so although they can’t be 100% sure they reckon it is a secondary and will treat me as such. Was such a bitter sweet appointment on Tuesday there to be told how well I was responding to chemo in one sentence and the blo about the secondary in the next. The liver secondary is tiny though and causing no problems at the moment. I feel blessed to know it’s there so early as it did not show up on my original liver ultrasound and was found incidentally when I was given a ct scan for an area in my abdomen that looked odd. Turned out I have a very strange but fully functioning shaped kidney! The spot was picked up during the ct and I was given an MRI.
At the moment my treatment plan will continue as planned, chemo number four of six today. Surgery in feb, single mx and full node clearance. Rads if needed and instead of stopping herceptin after 52 weeks I will be on it indefinitely unless there are changes. I will have an MRI regularly to monitor the liver.
Obviously gutted to have mets but feel blessed that we know as I could have went through all this treatment and been slapped with a secondary diagnosis later on and who knows how big or damaging the liver met could have got before it was picked up.
After Tuesday I really struggled with anxiety and I felt like a tiny snow flake in a big snow globe and it felt like every time I had got myself together some big hand would come along and vigorously shake the snow globe. I really wasn’t in the right head space for commencing my next round of chemo either. I feel in a better place today and find this forum very supportive and encouraging.
I have a few things planned in the next few weeks and I have sons age 11 and 12 so I am trying to get in the Christmas spirit. My mantra for this month is don’t count the days make the days count.
So in a couple of hours I am off to see what the crazy and extremely hard working chemo nurses have in their sleeves today, wonder which ‘vein whisperer’ will get my vein cannulated today! Looking forward to catching up with my chemo buddies in my bay who come from all walks of life. And if I get off the ward on time - I get slow infusions after having an anaphylactic reaction on dose 2 - I will pop into the maggies centre for a cuppa. So Friday isn’t looking too bad. Keeping in mind that chemo is my miracle drug not my poison. Hard to hold on to when it makes me feel poop but look what it’s doing to the cancer.
Hi ladies, second opinion went really well. Consultant was very honest and open. Told me that he would in fact have gone down a slightly different route - palbociclib - but told me that capecitabine was a good route too. I think the chemo is preferable for me at this stage to get the primary tumor to a reasonable size. Bit concerned that palbociclib isn’t being used as yet for second line treatment but I’ll cross that bridge when we come to it! Unfortunately have a wee temperature today so sat in acute ward having Iv antibiotics while waiting blood results - not the Saturday I’d planned but at least I’ve got me feet up ?.
I hope yesterday went well happy-go-luck, did you get on ok? x
Hi ladies, Chemo number four went well.
Got extra two days steroids which had me questioning if they had actually given me chemo or a placebo.
Weird feelings have kicked in today though but i don’t feel garbage like with previous doses.
I have been ok, remaining positive. Focussing on the chemo zapping these rouge cells. Been doing visualisation- helps me feel better anyway.
My sons, 11 and almost 13 have been very positive. I have been very open with them all along - been a single parent majority of their lives so we are a tight team. Not being naive but they haven’t heard the word incurable so to them it’s not. Am not in denial but I am with them on the fact their are treatments available to me and right now I am not actually ill.
I usually visit my local maggies centre each week in some capacity and my boys do too. We have developed a good rapport with the staff. This week though I just haven’t wanted to be the cancer patient this week. I have experienced ‘that look’ this week. The pitying one. Then you feel guilty for upsetting others with your sad news.
Plus side though. I made it to the nativity concert at school today and I didn’t cry- gran did though which was a great source of amusement to my youngest son.
My central heating has broken down and it’s rubbish as it’s so cold but on the plus side having only two portable heaters has ensured my sons and I are spending lots of time in the one room - doesn’t happen all that often.
I think I am waffling now. Looking forward to the weekend, squatting it out at my parents for a heat and some TLC.
I hope the weekend brings you all many reasons to smile.
Thinking of you all and am grateful for the times when you have me in your thoughts.