Hi,

I am very much in the same position as yourself.Diagnosed with liver and bone mets.I am 56 years old .Have a Son and daughter.Have three granddaughters.I too take letrozole and Palbociclib,not had ,bone strengthener as had to have tooth extracted,I will have my scans on the 27th June ,then 4th July to see consultant to see if meds’ are working.Trying not to think to much about if meds are working or not.

feel I can’t give advice as I am still numb with the diagnosis.You are right not curable but it is treatable.So we have to think positive I know sometimes it’s hard as we have so much to live for.

I was getting councilling to help come to terms with this,but now have stopped.

i have booked myself into one of the breastcare meetings which takes place once a month here in Edinburgh.It is for women with Metastatic Breast Cancer,so I wil hopefully learn more about this awful disease and come into contact with women on the same journey as ourselves.

I still work full time.Some days are harder than others but collegues are great.

My grandchildren help me cope I try not to be sad,but it is hard.

I tend to keep put this smiley face on but inside I am angry.

I hope this helps,but anything you need to speak about please don’t hesitate.

I have found there are somethings you don’t want to talk about to your family,so you keep your thoughts to yourself.

xxx

Hi there,

I was stage 3c on diagnosis last year but already stage 4 by January this year.  As far as we know my mets are currently not in any organs except the lymphatic system but I am at least taking up the oars with you in the stage 4 boat.

Sorry to hear about your diagnosis.  I take it you've gone straight from 'nothing wrong' to 'stage 4 BC'?  That must have been a huge shock.  Even getting 6 months to adjust to being stage 3c didn't really prepare me for stage 4.

I'm coping by just getting on with life because what else can I do?  Although statistically the books say "3 years" I meet an increasing number of people living 10, even 15 years with stage 4 BC.  There's no point us putting a time limit on our lives because breast cancer treatment is coming on leaps and bounds every year so we simply have no way of knowing how long we are going to be around.  With stage 4, although incurable, they can sometimes get you into remission.

As is the case with many illnesses it is no longer quite the same 'death sentence' it was when we were kids.  In fact there are tentative reports of a women with BC given 3 months to live now seemingly being cured after taking part in a trial in the USA.  When I say "tentative" the team of oncologists can find no trace of cancer in her body, but obviously they are naturally reluctant to call the treatment a cure because it might not be for everyone and to do so would be a huge gamechanger that the media would leap on and report it irresponsibly.  Still, that is where we are these days, a massive leap forward from when my mum first had BC 30 years ago.

I realise some do see it as a dark cloud hanging over them, and I try not to be stupidly hopeful (i.e. I don't get my hopes up about being here in 10 years, nevermind 15) but I just live each day and make plans and enjoy life because we simply don't know what medications are going to come out in the next year, never mind the next 2, 3, 5, 10... years.

There is a point at which you reach a 'new norm'.  It's hard to see when the news is coming at you hard and fast and you're undergoing treatment etc. but in time things settle down and your new norm can be fun and happy and full of activities if you let it.

Thinking of you.

LJxxx

Thankyou for replying ,so nice to hear from you .I live in Bristol .I havent had any councilling ,but did go to a meeting which helped ,as i met some women with breast cancer,and they had similar feelings to me ,although none of them had it spread outside the lympth gland .The terrible thing about it was i went to see my Gp last year June,and he said that the tumor was the size he would expect it to be given the type of tumor it was,and he told me and my partner it wouldnt grow anymore. He also said if it was surgery i was after i wouldnt get it ,as he said they dont like to do surgery on those sorts of things due to the risk of surgery.He then said it would be best to get some softerfitting bras.I then thought no more of it till the end of November last year when it became extremely painful,and had grown considerably bigger,so my partner tried to make me a Gp appoinment.With work etc .I couldnt get seen till the January .When she told us it was very extensive ,and referred me back to the breast clinic when i had a mamagram ,ultrasound,and 3 biopsies which showed cancer in all of them.I still think if last year June i was referred back to the breast clinic then .I wouldnt be in the situation im in now, but im told not to dwell on it .Like you said its so hard to deal with ,as before i started this medication i felt really well ,are you still managing to work .I havent worked since February ,and im signed off till September .My GP has prescribed morphine for the pain. I am finding it extremely difficult copying My family are very supportive ,as is my partner ,but they are finding it hard to.Let me know how you get on with your scan etc.Hope it all goes well thinking of you Cocksedge

Thankyou for your reply .its nice to hear from someone who has the same cancer as me ,and is on the same medication. It is really hard im like you hope the medication works ..Since starting the medication ive gone from having loads of energy to virtually none .I cant walk very far,and cant carry the shopping like i used to do ,also the pain in the lower ribs,and sometimes in my chest .Do you have any of these symptoms,as i dont know wether this is normal or not .My appetie is quite poor and i have lost a stone in weight all since starting the medication.I was a really active person before .I walked loads,and always took the stairs instead of lifts etc .My GP says he expected this .I thought i would be back at work now.I hope it is just a temporary thing xx.

hi nice to hear from you .Its so sad your cancer has spread so rapidly .I thought if i had been diagnosed June last year when i first visited the Gp.I wouldnt be in the situation im in now,as i went because i had a lump in my breast then that had grown,and was painful .He said to me that my tumor was the size of that tumor that he expected it to be,and he said it wouldnt grow any bigger.At the end he said if i was really concerned to get some softer fitting bras,so i went away and didnt think any more of it till November when i tried to make an appoinment with the Gp ,as the lump had grown quite considerably.Iwasnt able to get an appointment till the January >when i was seen she told me it was very extensive,and referred me back to the breast clinic .I had a mamagram ,ultrasound and 3 biopsies. Which all came back as cancer,so i was then sent for a CT which showed something in the Liver,after which i had an indepth Liver MRI which also showed something in the Liver.I was then told i would have to be transferred to oncology.Where they sent me for a Pet scan which confirmed it had spread to the Liver,so ive been started on Letrozole,Palbociclib,and zoladex injections once a month .I will have another CT scan at the end of July to check if the medication is working.Its hard coping ,but you have to .The medication has made me feel quite unwell .Im not working at the momment ,as i work in an eye hospital.Which is extremely busy ,and to be honest i wouldnt have the energy to phyically do the job .How are you coping ?.Hope your treatment is working ,and hope you stay well xx

Hi there,

I wonder sometimes about these people who give us hope.I had my annual mammogram and ultrasound in March this year( had a ,ultrasound too as my primary breast cancer did not show on mammogram in 2016 but doctor said it was stringy muscle turned out to be cancer,had lumpectomy and 4weeks radiation treatment).my cance4 had returned in my breast consultant said that I would need mastectomy and he said that I would live to an old women,he gave me a book on mastectomy procedure,and that he would send me for liver and body scan as this is the usual thing done for breast cancer reacurrance,you can imagine the following week after the scan results that in fact the cancer had spread to my liver and bones and that 5he mastectomy would not go ahead.I was in turmoil I just gave the surgeon a look and walked out of his office,I pray I never see that man again he gave me hope and took it away in a matter of seconds.I now still work and I could easily sit in a corner and cry and give up,but I will not let this get the better of me.People say how good I look and how positive I am,but only if they new.I do have my down days you would not be human,as the cards we have been dealt with are horrible.

Like you I was fit and still try to be,only on paracetamol for pain in rib.I was a swimming teacher for twenty two years but gave up,my employers have now put me in reception,but this works for me.

I will work as long as I can,as I would only be at home doing stuff to keep my mind off the situation I am in now.

I understand that you’re family are helping,and coping the best way they can,but We all cope in different ways,please don’t be hard on yourself,I will let you know how things go.but keep in touch.

xxx

Hi,

what a shame,have you a breast care nurse? Cannot help with your injection,as I don’t get this one.

Talk to nurse tell her how you are feeling,I would change your GP he cannot see inside your body how does he know what is going on.You should be referred back to onocology.

I am due my next cycle of Palbociclib on Friday.Have an appointment for my bone strengthener  on Friday but no time,they cannot give me a time as the ward is to busy,I have been phoning for the past two weeks looking for a time for my appointment,it’s a mess.So onFriday I shall take  a seat in the ward and I will not move until I get my bone strengthener.The system is awful,my husband is going to see our MSP,in relation to this,the way We are getting treated is disgusting,we need to be treated better.In your case surely they should be looking into your pain not just waiting for the scan,you don’t feel pain for no reason.

Do you get your bloods checked ? The first two cycles should be fortnightly as the Palbociclib can cause your white blood cells to crash,Wondering if this is why you tired,are you on the maximum dose of Palbociclib because this can be reduced,instead of taking it for three weeks it is taken ove4 two weeks then a weeks rest.

i do get fatigue,my rib really hurts at the moment,but just taken paracetamol,think it might be broken again,but nothing the6 can do about that.I do get panic attacks because I get scared what the future holds,but I talk myself round,this disease is not going to ruin anymore of my life.

Big hugs pick yourself up.Think positive,don’t let this take over,be strong.

remember I am here if you want to talk.

xx

Thankyou for your reply .it really helps.That you have had similar treatment with your care,as we have .I understand they are busy,and there are lots more people out there with cancer, but we still need to be treated properly ,and they need to stop making mistakes.Thats awful about your appointment ........These things are important and are detrimental to your health .Hope you manage to get it sorted .I dont blame your husband for taking it futher .It could also help other people,as the more is said about poor care .They might be more careful ,and make less mistakes etc.Too many people dont complain ,and just accept it for what it is ,so nothing gets done .I have worked in numerous Hospitals over the years,and have seen many  mistakes made,and many of them have been brushed under the carpet,and staff have gotton away with it ,so it needs people to speak out ,and its people like us that can help to change these things hopefully. Im so upset that as isaid before that the GP i saw last year didnt pick up on it then ,and maybe i wouldnt be in this horrible situation .The same as you really ,but like you say you have to get on with it .I go to see the oncologist tomorrow afternoon will update you on what he says.Let me know if you got your bone strenghner.By the way im on full strengh palbociclib.Had my bloods taken yestersday ,so oncologist will discuss it on Thursday .Take care speak soon xx

Hope you got on okay today.xx