Secondary beast in lung , bones ans liver children

Hi there

I was diagnosed with secondary bc in March this year, my secondaries are in liver, spine and ribs. 

I have two girls aged 5 and 8. They have been told I have cancer, it broke my heart to tell them but we were advised by a counsellor that it was the right thing to do. They seem to be doing really well. Do you mind me asking if you have told your kids especially the younger one?

What treatment are you on?

I'm on ribociclib, letrozole and zoladex. I also have Denosaumaub.

The local hospice have been excellent, do you have one near you? They have lots of services for all family members affected by cancer.

X

Hi , I’m on exactly same treatment as you since feb  had to half dose ribo as neutropenia, I told them right from diagnosis and have been honest with each new development, it’s so hard but I want them to know what’s going and don’t feel like it doesn’t effect them or they don’t matter, my daughter the 12 year old has her moments when she’s sad but at least can express it , my boy 6 is struggling he’s tearful since moving to junrs 2 weeks ago and cries most days just saying his body misses me being near him , I’m struggling more now I’ve lost all my self confidence and piled on weight and finally my husband has left today are u finding side effects ok with moods , I’m fed up of hot flushes , not sleeping and trying to be normal for kids , I feel so guilty that everyone else is losing a mum , a daughter etc 

I'm sorry to hear you are having a tough time. 

Yes I think it was the right thing to do to tell the kids from the start. My 5 year old struggled to get to sleep initially, I think she was afraid I wouldn't be there in the morning. This lasted for weeks but she seems to be settling now.

How are you getting on with treatment, are your scans improving?

I have had two scans so far and both showed shrinkage in liver and improvements in the bones.

I spoke to my oncologist a few days ago and asked what the longest time one of their patients has been on ribo, she said since 2017 and they are still stable!! This is so reassuring.  The way I look at it, the longer we are on our 1st drug the more chance newer drugs will be available when we need them.

I know this is a rubbish situation to be in but there is proof on these forums that women are living longer with SBC. Have a look at the positive bc stories on the chat section. Some people on there are stable and some have reached no evidence of active disease. That is what you have to aim for in your mind, keep positive!

I've started analysing my diet too, I'm taking ginger, turmeric and green tea. I'm eating lots better and slowly moving over to a Mediterranean diet. 

Do you exercise? I find that really helps to clear the head, a brisk walk or aqua aerobics does the trick.

Try and be a bit kinder to yourself, rest when you need to, cry when you need to and give the kids lots of hugs.

You can live well on these medications for some time and then there are plenty of options for future treatments. Are you ER+?

X

I do have mild flushes and hair is thinning alot but they are the only side effects I have.

X

Yea I agree , I’m taking liv52 , vit c and aspirin , my latest scan shows continued shrinkage in liver mets , and stable all others , my first scan showed excellent response in all rumours at least 70% shrinkage in all , so I’m hopeful , good to talk to someone in same situ x

Great news that you are responding to treatment so well. Do you mind me asking why you take asprin??

Yes be good to stay in touch

X

Your risk of clots is doubled with cancer so I take to reduce every little helps ey x