Secondary breast cancer

Hi Luppie 

Hello Doreen, I'm sorry to hear your news. I have a different cancer to you but I also had bone metastases in my pelvis. Click on my username if you would like to read my profile. Don't worry about accepting things/getting your head round it etc, it's still early days. It might help to have a look at the incurables group. This is the link  Living with incurable cancer forum - patients only 

The title may sound a bit grim but we are a good group of people, very supportive and friendly. We like a laugh, which can be dark humour sometimes to get us through. We also have all sorts going on, book club, crafts, gardening. It's to help us share what we like to do, to make the most of our time. It's about taking back control. 

Would you consider counselling? Your CNS/specialist nurse or hospital team may be able to refer you. The Macmillan lines are open and the team are very helpful and supportive if you wanted to speak to someone. This is the link 

https://www.macmillan.org.uk/about-us/contact-us

I hope you're feeling better about things soon but remember that it takes times time. Take care Doreen,

A x

Thank you so much for replying and the advice.

I have looked at the site you recommended and requested membership.

One question do I have to wait to be accepted before I can post anything. 

Doreen x

Hi Luppie 

From memory of when I joined the group I don't think I remember being notified as being accepted, it felt like a seamless thing. I would just try to post something if you would like to. I'm pleased you've joined, we're a good crowd. Xxx

Hi I got notified of acceptance very quickly then I posted on it 

Thanks.

Hi there, I’m sorry to hear this but I’m in the same situation and about to start cycle three of ribociclib. I’m also taking letrozole daily. I have only felt a bit more tired from the 21 day cycle of ribociclib and my heart tests and bloods are doing okay so I hope you will be able to tolerate the drugs too.

 I was diagnosed in February 2023 and it’s been a psychological nightmare to get my head around it all to be honest .. I’m taking each day as it comes and have meltdowns whenever I feel like it.. I’m single and live alone so I can do this but I’m thinking about getting counselling soon via a referral by my macmillan nurse.

 I also have auto immune issues and was diagnosed with ra sero positive three years ago so having two major health problems is really hard to cope with.

 I thought the back and hip pains were due to the ra but got the shock of my life when I was told it was metastic breast  cancer in my sacral lumbar areas and hips, chest wall and sternum. 

It’s impossible to prepare for this and like you am in shock still, but hoping that I can adjust and manage everything day by day.

take care of yourself x

Hi thank you so much for replying to me.

So far I'm managing to tolerate drug.

1st cycle just done.

My bloods and ECG okay.

My breast nurse phones me she has referred me for Oncology physiologist. 

I go in around a weeks time.

See how that goes 

I too live alone.

I'm 5th member of my family with cancer.

I don't like putting all the emotional side of things on my family.

I have Lupus an auto immune disease.

I don't keep good health so now this is added into the mix.

I'm just doing what I can everyday.

I still haven't processed this is actually happening to me.

Don't know if that's a good or bad thing .

Take care ️

Hi Starflower

Hope you are doing OK now.  I'm in a similar position to you - diagnosed last October mets to spine, pelvis and several other places and still in shock. 

I'm on palbociclib, denosumab and letrozole plus several other meds for other bits.  I don't know anyone else in my position and I'm hoping that this is because it's now regarded more of a chronic disease - incurable but treatable.  It's. been incredibly hard to deal with though.  I'm not on my own - I have a wonderful husband but cancer is a very lonely disease I think and only those who are going through what we're going through can truly help.  

I have had six months or so of coming to terms with it all and it's been a rollercoaster of emotions and. health problems and I thought I was doing alright but family want to plan holidays and I've found this incredibly upsetting and stressful and made me feel awful again.  Apparently planning for the future in our position is not always easy, but to keep things "normal" they have to be done.  I'm a bit of a mess at the minute because getting travel insurance has been a nightmare and sort of reinforced that I'm not a safe bet, not to mention incredibly expensive.

Hope you don't mind me replying to you.  I haven't looked much through this site and you're the first person I've come to who has metastatic breast cancer. 

Take care.  

  i iHi i know its been sometime since you posted, but you said you didnt know of any other people who have got the same as you metastatic breast cancer. Unfortunatly i am one and so are 2 of my closest friends. I am on the same treatment as you and have been for 3 years now, my friends a little less time. I have it in so many bone it would take to long to write them all down haha. I had a nuclear bone scan the other day you have probably had one too, its were you have an injection and under the scanner all the bone that have cancer in them light up i looked like a christmas tree there were so many. I have had the secondary now for 3 years, and was diagnosed with my original cancer 19 years ago and i am still here. It is difficult sometimes looking ahead but we dont know how long we have left. I do try to take each day as it come, but enjoy them as much as possible. Persevere with the holiday insurance you will find one and enjoy your holiday it will do you good. Just Breath and keep calm it is what it is. Take care Dawn

Hi Dawn

Thank you so much for replying.  I'm so sorry to hear that as well as you having it two of your closest friends do too.  It's probably a good thing that I don't know anyone else with bc secondaries although I know one or two men who have prostate mets though the dancing class we go to.  They've helped enormously with support and advice.  Lovely to know that you're 3 years down the line as well - that really makes me feel so much better. 

I'm finding the experience of being diagnosed with mets is so totally different to being diagnosed the first time around - in fact it's almost like a different disease but just as awful to deal with.  I tried the local breast support group but the ladies there (and a man who had transitioned) were dealing with the problems I encountered 20 years ago and I felt like a fish out of water.   Anyway I did a bit of investigating because I felt that if organising the holiday upset me so much I might not be dealing with this as well as I thought I was. 

As well as receiving your lovely message I've also come across several other Macmillan recommended places to go.  One of them is BUPA counselling which I'm going to try - not sure how I'll get on with that but I'll give it a go.  The only thing is it's a regular weekly thing and at the moment I don't want to be tied down to times which might sound a bit selfish but I really don't want to miss out on the things we enjoy - seems to me that the cancer will be winning if that happens.  Anyway I'll give it a go.  The other thing is the buddy support and a very nice lady contacted me the other day but it sounds a lot like the BUPA counselling so I said I'd be in touch if ever I felt I needed support.  The other thing I've found is a site on Facebook, which I have to say, is like a breath of fresh air.  There's much support and help on there it seemed to be just what I was looking for.  I haven't used Facebook for years so I was a bit nervous but the ladies on there seem to "get it" and you can dip in and out and I've met several who are on similar treatments and have similar worries and questions which, with all the best will in the world, someone who has never gone through what we're going through can never understand fully.

I actually think I'm doing OK now and you sound like you are too which is great and very reassuring.  I'm 7 months into this and feeling quite well although I seemed to have lots of hiccups at first - the grief, sleepless nights, dealing with treatments, problems with other ongoing health issues (don't ask!!) and I've recently been told my 2nd MRI scan showed everything is stable which is a relief.  I had a nuclear scan in between.  Like you I'm taking each day as it comes, trying to eat well as my last lot of bloods showed I was anaemic and other counts are low so oncology have reduced palbo to see if that works.  It's my week off this week and I see the oncologist on Thursday so fingers crossed.  

Sorry this is so long but once I start.....

Deep breaths and take care. 
Jayne x

Hi Dawn,

I'm very ill and I feel I'm getting worse. My life is unbearable but I'm finding it difficult to keep my head above water. I'm on. Palbocyclib and have been for 3 years. Recently had a scan as I started on letrozole given to me for the first time in April 2023. I had taken it in February 2021 but the letrozole gave me side effects. I was off mental health medication and am now on it. I had a ct scan in April 2023, and a nuclear pet ct scan last year. I have it in the spine but when I have had the pet ct scan there were many areas which were highlighted and not just the spine. There were some areas where the pet ct scan caught the brain but this was not acknowledged neither have the other areas. I have been kept in the dark which is why I believe there has been a cover up in all of this. I am struggling for help and acknowledgement. I am struggling a lot and am now trying to see a neurologist again. I'm very worried. Very.