Secondary Breast Cancer as a chronic illness? Any positive stories?

Hello everyone,

I am newly diagnosed with secondary breast cancer, HER2 & ER positive with mets in my lungs. 

I’ve had three rounds of chemotherapy so far, with at least another three to go.

My oncologist told me recently to not google things (easier said than done) but also to look at this like a chronic illness in the same way that something like diabetes is. I just wondered whether anyone has been told something similar? Just trying to cling onto any good news that I can find. I read about a woman who lived with this for 30 years, I really hope that I (& you) can too.

It would be great to speak with someone who is down the line with their treatments and living their life and doing well, this diagnosis feels very isolating especially being so young. Someone who could shed some light when I’m having down days.

Sending love to whoever needs it  

i also like to hear any positives. Its the fear of the unknown. Diagnosed last May, chemo finished. I have been on some of the Breast Cancer Now workshops which i do recommend - Look Good Feel Better. Also the zoom groups to talk to others in the same situation. Good luck x

Hi I was listening to a news item a few months ago on the radio and I heard it said that cancer was being thought of more in terms of a chronic disease nowadays. Hope this helps x

Hi

I was diagnosed with SBC in June 2021 and was also told to view the condition as a chronic illness. I’ve recently had a CT scan and my bone mets are stable and the tumour in my mastectomy breast has started to regress. 

Since the scan results, it is feeling more like a chronic illness. 

Life is settling into a routine. I’m coping well with Palbociclib and Letrozole. My oncologist says that I can move to bi-monthly appointments. I’m experiencing longer periods of time without thinking about the cancer. This has taken 6 months to get to feeling this way. 

I’m self employed and still working but at a reduced level. I’m walking a fair distance each day and feeling good.

I hope this helps.

Hi, I have been living with secondary cancer in my bones for getting on for three years now.  It was a terrible shock and I seemed to be living at the hospital with endless appointments, scans, surgery, radiotherapy and starting drug treatments.  However I have been stable now since October 2019 and am living pretty well normally apart from four weekly hospital appointments and some minor disability  due to the mets causing a fracture in my spine for which I had to have surgery.  It just means I walk with a stick and have to be careful about sitting to support my back but I do get out walking everyday.   I remember at first I did spend a lot of time sitting on the sofa crying, feeling horribly low and depressed.  It took time but I have learned to live with it and the emphasis is very much on living with cancer as a chronic condition rather than thinking about it as a death sentence.  I plan treats for myself as far as possible and always have something in the future to look forward to.  I really don’t think about cancer that much now and just get anxious when a scan is in the offing.  I guess we all learn to live with it. One thing that helped me was everyday writing down something I was grateful for in a notebook and that made me realise the many good things I have in my life.  Lots of love to you and everyone going through this. 

Hello! I live with the mantra that my cancer lives with me, not me living with cancer. I still do everything a normal 30 year old would do and i dont let it take over. When i was first diagnosed i hit rock bottom. Its completely normal to have bad days after the shock of the diagnosis. I have finished my main treatment and had extremely good results and on herceptin long term. So keep ur chin up it will get better

Hi grose94

hope you’re coping and doing well. Could I ask you what chemo you are on? How how is gone, I’m due to start taxol next week and feel I won’t be able to go out due to lack of confidence with hair loss although I also had hair loss 5 years back. I have mets in lung and yesterday had some fluid drained so feeling better.

Thank you for any help louise x