Straight to stage 4

[Anne30]

I am also relatively new to this. Bone mets found after breast lump in March. I’m on Ibrance Anisrozole Calcium and bone injections. All a bit of a shock. I had two weeks off work but am back now around appointments. They are being very understanding. I won’t offer advice but I will tell you that so far it’s doable and I feel okay. The ladies here are very experienced and helpful. There’s also a lovely little video somewhere on the site of a nice lady talking about her life with secondary breast cancer. She’s five years down the track and living normally. Best wishes

[BrionyJL]

Hi Juma
I am quite new to this site but I find it really helpful. I initially presented with back pain and by the time any Dr took me seriously (I ended up going to A+E) it was already spread from breast to spine and ribs... I had back surgery and they put me on tamoxifen... I am now on TDM-1 + Denosumab xx

[Moijan]

Hi. Ladies, 

good to hear from you...yes......we must expect more time xx

my primary was 2001, with 12/13 lymph nodes...bc affected......bc returned in 2013....liver and bones.

i know it's hard not to feel that trickle of fear at the back of the mind.....but there is so much more in our favour these days. Moijan xxx

💚💚💚

[Harebell]

I also had a first diagnosis of stage 4 BC with 9cm tumour in 2010. It does leave you feelinv that life is not only quite precarious but also very precious. I have recently been diagnosed with secondary BC in liver and bones and have just started chemo again after being on letrozole and a fulvestrant trial. Once again i wonder what this means for me. First time around I could not have guessed that I would still be enjoying life now 7 years later. So must hope there is still time to enjoy some more.

[happygolucky280]

Oh Juma what a nightmare. Glad you are getting to rest and your husband sounds like a good one.
Glad your menstration is finished for this Month and hoping you feel better tomorrow.

I am at my parents just now, I have awful bone pain from the bone marrow injections. I have taken some gapapentin but need to drive tomorrow so don’t want to take to much.
I really just want my own bed, I know it’s not too late in the night yet but I think it’s going to be a long one and it always seems worse in the middle of the night.
X

[Juma]

Thanks Mohan, I will ask Inc about it at next visit.

Bad day today. Just finishing the worst menstruation of my life which has left me utterly exhausted today. Spoke to BC nurse who is happy that it has now subsided but I'm thinking of pushing for my ovaries to be shut down at next once meeting. It will bring its own challenges but I can't be housebound like this every month. Now laid out on the sofa while husband is doing everything - without complaint - but I feel useless. Sorry for the pity party, just need to get it out x

[happygolucky280]

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.

X

[Sheep]

Hi was I initially diagnosed with stage 4 with secondary liver - that was 3 years ago undergoing 2nd lot of chemo at the moment

[Moijan]

Juma- there is a drug you can inject, which will boost your white cells and help against infections as a result!

gcsf or filgrastim...you could ask your onc. Xx

moijan🤗🤗🤗

[Butterflyflyfree]

I know exactly how you feel Happy, bone met found responding to chemo when rescanning to check lung nodes (which are benign) Shocked at diagnosis but relieved it’s been found now. Having said that, I am still finding it difficult to come to terms with, and feel completely out of control at times. 

6/8chemo done, then another scan and breast surgery. Haven’t seen the surgeon yet so don’t know what would be the best option (WLE or Mx) and whether radiotherapy is needed. Decisions also to be made on plan for bone met (high dose radiotherapy and/or surgery) Herceptin and hormone therapy then for the long term.

I guess it’s no wonder I feel so uncertain? 

I hope your chemo went ok and your veins were willing. Good luck with the SE. Xx

[Juma]

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

[Moijan]

How did today go? Happygolucky. (Love the name)

as as the others have said.....we are here for you.I was missed in 2000, mastectomy 2001, mets to liver and bones 2013 ish

looking forward to hearing how things are, when you are ready.

Moijanx 🤗 💚💚💚

[happygolucky280]

Thank you for your replies ladies. Feeling very positive today xx

[nicky08]

Hi happygolucky

It's a huge blow, as you say, to be given a secondary diagnosis - let alone a primary one. There are several ladies on the form, with various mets, who have had the 'double whammy' so they know what you're going through.  It takes time to adjust to all of this especially the thought of having to continue treatment once you're friends (and fellow chemo ladies have sailed off) think you've finished and conquered all (as one of your other posts mentioned). However, you do have us so you are not the only snowflake in the globe (love that description) and we are all here sparkling with you.  It is really tough at first and you do need to give yourself time to adjust to waht we call the new normal.  The read that is most popular here is 'Bone mets, please join in' - even if you dont have bone mets.  We hang out on there quite a bit although there are also other threads about particular treatments and also different mets.

I started off in 2003 with primary, then diagnosed with bone mets in 2008, then liver mets in 2013 - it's been a rollercoaster but I'm still here getting on with things.  I found even with my primary and especially when I had my secondary dx and was on FEC chemo that I needed to plan some small treats for when I felt OK (mainly on my days off treatment and the side effects).  Something to look forward to and then plan something a bit bigger for as and when you feel more able to enjoy it.  As to hunt the vein, alot of us have had that delightful experience.  Mine have pretty much given up after FEC destroyed them and I now have a portacath fitted which makes life so much better - and easier.  Others have a PICC line - it might be worth considering even though it needs flushing every week?  Once you've had your chemo presumably the Herceptin will be the subcutaneous injection every 3 weeks so at least you won't have to face the IV each time.

Anyway I hope treatment goes well today and you have your catchup, I actually liked going to our chemo ward as I used to have a nice natter plus someone made me cups of tea and brought me a sandwich for lunch.  The nurses are all so lovely and I'm sure they are where you go.  You seem to have a positive head on your shoulders which is good but expect a few ups and downs, we're here for you and understand what you're going through as we've all been there, done that, got the T-shirt!

Nicky x

[Carolyn52]

Hello happy go lucky

Love your attitude ..go get the chemo infused today and think of it as Rambo going through the body killing all the baddies !!!

Hugs xxx

[happygolucky280]

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.

Thanks for reading and thinking of you all
X

[Moijan]

Juma how did it go?

[SML]

Juma ..... Wishing you all the very best for the second opinion. In my first oncology appointment, I just sat there and listened - I think I, too, was just in shock ... not able to process the information, let alone ask anything or take any decisions. In the second, I worked through my list of questions, despite feeling a slight impatience from the oncologist. I have my third appointment on Monday, with the results of the new scan - and will go armed with a new list of questions. I find it hard to be strong and articulate, at a time when I feel desperately vulnerable .... but I think it's just what we have to do ... to have some sense of clarity and a modicum of control. Sending you love xxx

[Juma]

Thank you SML and the same back to you. 🤗

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.

[SML]

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.

xx

[Juma]

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

[Moijan]

Hi SML yes we often chat about other people's comments...someone said to me last year..'you are lucky with your cancer much more options for drugs...my mum has hardly any'. That b annoyed me...but they 'know not what they say'  to quote someone miraculous...we must just plod on..say, 'I'd rather not discuss it if you don't mind' with a smile xx

they cant know what it's like and are mainly pretty ignorant.xx

M😘

[SML]

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

[Carolyn52]

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 !!

Hugs xxx

[funnyface]

Hi Girls, I wasn't stage 4 from the start. I have been in treatment for 12 years. I don't even try to explain that hormonal treatment is different from chemo. This is what I listen too! When do they think you will be cured? You can't possibly have been on treatments for 12 years! They wouldn't give anyone that much chemo (I guess I'm a liar)! How did you get 3 kinds of cancer (breast, lungs and bones)! You're just like my sister she had 3  kinds of cancer! Her sister  had metastatic breast cancer in liver and bones and was an oncology nurse. She tried to explain metastatic cancer to her. She never could get it!  Another person, I've never heard of breast cancer in the lungs! That doesn't sound right! I think you need another opinion! Why don't you come on a bus trip with me and a bunch of other ladies. We  just walk around and enjoy the shops and take a few tours. GRRRRR this is after I told the person that I can't keep up with others. I walk slow and can't walk around all day! Is your daughter going to get her boobs off to prevent this? Questions are never ending!! FF

[Carolyn52]

Hello SML

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

[SML]

Thank you, Moijan ... it's so powerful to hear other voices. I just worry that, at the moment, my fear and panic are so strong I can't offer anything to others. However, it means the world to me to not feel alone. Thank you xxx

[Moijan]

SML, please do not ever apologise for sharing....this is why we all post on here...by hearing about others it helps us, and also if we can share helpful hints or experiences, then that too helps us.

lovely to hear from you. I too am making excellent use of my local Macmillan centre......fear is a very tough cookie....the brain tries to protect us by pointing out all things that 'could' or 'might' happen...which of course isn't that helpful!     

Thats is why sharing on here is so very valuable...it can help us find other possibilities xx

You might wish to try headspace...which is free at the basic level...which is all you need.....helps us stand outside our thoughts...makes them more manageable

[SML]

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

[Moijan]

Yes Juma, of course it does. The brain works overtime.....tries to protect us...would you believe?

hope you get sone peace...lots of love,

Moijan

[silverlining]

.....hello Juma....good to meet you,

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....

All good wishes,

silverlining x

[Moijan]

Good luck Juma,

theres loads of of us with mets and also with bone mets.......there is a thread 'bone mets, please join in' when you feel like having a look. I had my primary in 2001, but even at that time, bc in my lymph nodes in my axilla had spread to the tissue in the armpit, so I wasn't too surprised that it came back, to my spine and liver in around 2013

myself...I don't really worry too much about 'staging' as we are all different with pretty individual outcomes

to be honest, these terms are pretty scary and often don't mean much in  the long run.

very best of luck, let us know how you get on...oh and there is a 'private group' on here you can ask the moderators to access you to join, 'secondary private Group'  where the posts aren't public...if you want.

hugsxx

Moijan💚💚💚

[Juma]

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.

[sod6162]

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.

[24838]

Hi Juma, 

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.

[LYNDYLOO]

Morning Juna

Welcome to the forum.

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.

Linda

[Juma]

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