I was diagnosed with primary breast cancer end of April which was hard. After MRI scans biopsies and CT scan now -diagnosed with secondary breast cancer. I am ER positive and her-2 negative. Few lymph nodes under both arms effected and small legion in bones. The medication I am on is letrozole and palbuciclib. I dont know how any one else feels but I am struggling to come to terms with this. I try very hard to be positive but it only lasts for a while. I just feel within a matter of 3 months my whole life and future has been taken away. I feel very grateful for treatments but still cant help feeling my days are numbered. I have an 18yr old daughter and 20 year old son and I am so worried about leaving them. Just wish I could feel my normal self again have been healthy all my life until now.
I am really sorry about you secondaries diagnosis, I was diagnosed with secondaries in my spine in June 21. I am also devastated and trying to digest this. I have a 20 year old son, I am 51. I am feeling the same you're not alone.
I am also on Palbuciclib with Fulvestrant (which is a hormone drug like Letrozole). I am ER positive too. How old are you?
There are many ladies on this site that are living with bone mets for many many years 10+. I have a good friend who had bone mets 5 years ago, unfortunately in the last year it spread to her liver, her last scan results can back and they could hardly see the spot on her liver and Ono said it wasn't worth mentioning as it had shrunk to near on nothing. There is hope.
Remember there is a ladder on treatment out there you and I are only on the first line of treatment. I want to also feel normal again, this site and the lovely responses sent should help and inspire you given time. Keep in touch and take care Lou xxx
Thanks for the reply I am 54. You seem in a similar situation to me. Thanks for the advise it's good to know people are living many years now. I Like to hear positive informations about SBC. I didn't know very much about SBC always thought it was a Death sentence but my ONO had said you can live many years with it. Good luck with your treatment take care and keep intouch Kaz x
I was told I had lobular breast cancer and am exactly the same as you and on the same tablets too!! My twin!! I saw a big black shape on the scan that was under my armpit...6cm apparently. I then totally "shut down".
My sister comes to the oncologist with me. I let them look at my breast and armpit and tune out whilst she asks questions. They can't operate as one tumour is on my chest wall. These tablets apparently shrink tumours. At the end of this month (July) I'm having a CT scan then a meeting to review results.
I only have Cancer when visiting the hospital. When I'm home I try desperately to forget it. As I haven't had treatment and just take these two tablets and I look the same it is easy to pretend. The giveaway sign is that I'm a size 18 not 14 now. I live alone and comfort eat to prevent panic...I always wear make-up and get my hairdresser to still do blonde foils but my hair is thinning and my eyes look scared.
I don't know if me telling you this helps, but you aren't alone...I felt isolated because everyone on here seemed to have mastectomy chemotherapy or radiotherapy tales/problems and I just have Letrozole and Palbociclib to chat about!! My only offering I can give you is we both hopefully will keep going and new treatments will be tried and tested on us. please keep in touch,
Thanks for replying it does help to hear that you are on the same treatment as me. I hope your CT scan goes well I had one of these and I know when you go for results it is nerve racking I normally take my husband along as sometimes I dont take everything in. I am on my second round of treatment and my last appointment my neutrophils were down a bit so reduced the Palbociclib from 125 to 100 but was told doesn't effect treatment. Have you had any side effects? I Had ulcers in my mouth which have now cleared up and hot flushes several times a day. You have the right attitude just to forget it when your not at hospital apart from the couple of side effects I dont feel any diffrent apart from I lost weight due to feeling anxious. Hopefully we can be kept going for a long time keep intouch Karen xx
Hi I was diagnosed with secondary breast cancer in my Sternum last Nov, they put me on letrozole but upset my stomach too much. Am now on Anastrozole which still upsets my stomach and my hair is going really thin. I wish there was a treatment that didn’t come with so many side effects, there are days when I think I’ll come off the meds and at least have a few years of feeling and looking normal as we all know how this ends!
I don't post on here that often anymore but I thought I would respond to this thread as what you have all said resonates with me in some form or another.
I was diagnosed with secondary stage 4 in April 2019. First time diagnosis, shortly after my 50th Birthday. BAM happy birthday.....
Anyway, I was initially put on ribociclib and letrozole, ribo did not agree with my liver. Once that went back to normal was switched to palbo 125mg together with letrozele and monthly denosaumb injection which I call bone juice
It took me a good 6 months to really get my mind in order, you will learn that other people who have same diagnosis are on different treatments. I have not been and don't think I will be offered a Mascteomy, where some others have. I have moved on from that now.
There is very little support for stage 4 but a couple of ladies set up a whats app group in my area specifically for us stage 4 peeps. The aim was to meet up once a month to have a chat and laugh, its not all about our diagnosis but nice to know there are people who get it. But we only managed to meet up twice then coving hit. But we still chat on WhatsApp.
My 3monthly scans have been stable. I have one due this Sunday and scanxiety is kicking in but thats normal
I had a mammogram one year after diagnosis and my tumor had shrunk by about 70%. I have a further one end of this month.
I still work full time, although I get tired, my hair is a little thinner and skin can be dry, I am doing OK.
Remember its OK nit to be OK. I have far more good days than bad since I was first diagnosed.
New treatments are coming out all the time.
I would recommend you read the thread positive stories started by my diagnosis friend which was started to show people there are good news stories out there.
Remember we may be incurable but we are treatable.
I wish all of you all the best with your treatments.
Hi there Kaz, I'm coming up to my one year anniversary of secondary diagnosis of the bones, exactly like you I was diagnosed with secondaries just after finding the primary. I'm on the same medication as yourself and I'm doing really well. My scans have been good and I'm just back from a staycation holiday, I'm living life as normal as possible and I feel ok, maybe a bit hungover from the gin and tonics haha. I mentioned to loulou1007 there's a bone mets thread over on breastcancernow.org where there's ladies on there living with secondaries 10+ years, and when they were diagnosed these newer treatments weren't even available. So I take comfort from that. Stay strong and good luck with your treatment plan
I am so pleased you are doing well. It does give you hope when you hear that others are doing well and nice to know that there are ladies doing well after 10 plus years as well. I just thought the worst when I was diagnosed with secondary. It's good you are living life as normal and going on holiday. Hope you continue to get good results.
Sorry your having problems with the side effects I know its difficult living like this and with all the uncertainty of our situation. I find it doesn't help your state of mind but I hope you can keep going to get as many years as possible. You never know what new treatments may become available. X
