Living with SBC

Living with secondary breast cancer Supporting each other and sharing experiences
1

just wanted to vent…
It’s really just sinking in that this is the last weekend before I start the chemo that I will be on for the rest of my life. God, it’s a weird feeling.

I have so many thoughts and emotions going forward. 
I feel let down by my body.
I feel let down by my gp who told me to just take painkillers for my aches and pains. I’m scared that the RIBOCICLIB will make me feel ill, and/or that it won’t do any good.

I feel guilty that I’m leaving my parents, husband and step son earlier than expected.

Is it ok to not feel like I should be doing something amazing everyday and just ‘be’?

I hate that I have these thoughts and I really try not to. This really is just a thoughts dump and I’m sorry for sounding depressing. Just not sure how to come to terms with it all…if that’s even possible

2

Hi Seren23, I was diagnosed with secondaries in September last year, in the middle of treatment for primary. I’m on similar meds to yourself and just wanted to let you know that my first scan after starting treatment showed healing in the bone and no more spread. I’m tolerating the medication really well and am only working from home due to covid, I’ll be back in the office after my second vaccine. Stay strong, it’s all very daunting I know that, but it will get easier in time

Jools xx

3

Hi seren23,

So sorry to hear of your diagnosis, it’s incredibly hard to take it all in, or even believe it’s happening to you. Everyone here totally understands what you are going through and please vent all you like!

Don’t feel guilty and it’s certainly ok NOT to feel you have to be doing something amazing every day, yes just ‘be’.

It’s the shock of being diagnosed and the 'why me? feelings that overwhelm us, your thoughts are not dumb, they’re so normal, be kind to yourself :heart:.

If you read a few more posts you’ll see that a huge amount of us were let down by our GP’s etc. our pains were dismissed, just given painkillers, you’re definitely not alone there. It’s infuriating I know, but how were we to know, we’re not doctors, we trusted them. 

Hoping this last bit may help you,  I’ve been on Ribociclib coupled with Letrozole since January 2020, I was finally diagnosed in December 2019 with stage 4 bone cancer, after having terrible pains since the October. So now I’m able to have an almost normal life, I’ve accepted that I’ll be on medication for ever, but it’s given me my life back.

I got proper pain control from my local hospice, they know what they’re doing and it’s so much better now. Also if you can, exercise is good, I love to walk.

I wish you all the best, will be thinking of you :heart: and sending you virtual hugs, look after yourself. 

Timmycat xxx

Some people live for many many years 

4

Hi Serena23,

im sorry to hear about your sbc diagnosis, it must have been a huge shock. I have sbc in two of my vertebrae and for the last 4 years I have been on Palbociclib and Letrozole.  Yes there are side affects but they are manageable and although there are some things I cannot do and I get tired easily, I do believe I have a good quality of life. Like many other ladies I was never warned by the hospital what signs to look for and my GP just dismissed my pain as muscular, but since diagnosis my treatment has been excellent.  Please rest assured that you can move forward and get on with your life and there is always lots of support on this forum for when you’re feeling low.  Take care and keep safe.

5

Hi Seren23

its perfectly normal to feel upset and let down, I was diagnosed in August straight to secondary, it was such a shock as I had no aches/pains not even a lump, I had a sore under breast which didn’t heal,

after pet scan I also have it in lymph nodes, distant lymph nodes and patch on pelvis.

Atfirst I thought I would never come to terms with it and from waking on a morning till going to bed it was constantly on my mind.

Im on ribociclib letrozole and zoladex and tolerate it very well, it has definitely got easier as the days and weeks have passed and some days I don’t even think about the cancer, I never thought I would say that, but I took advise from this forum and take one day at a time, if I’m having a bad day that’s ok, I’m allowed but can honestly say I have more good days.

My most recent scan was stable so treatment working, 

Stay strong and positive and there’s allways someone on forum to give advise :two_hearts: xx