New here - shocked by incurable bone cancer diagnosis, previously clear of breast cancer

Hi Caro_2468 

Welcome to the incurables group. A very supportive group despite none of us having wanted to be in a position to be qualified to join it. I am one of several people in the group with metastatic breast cancer. Mine happened much more quickly - secondary deposits were found in my liver before I finished primary treatment, so I was probably stage 4 de novo. Don’t give up on being able to live again. It’s a horrible shock initially, but as your doctors have told you, many secondary breast cancers can be controlled through treatment. It will feel easier once you settle into it. I try to think of it as living with a chronic condition. My life isn’t the same as what it was before, but it’s a good life. I have been in this world for 4 years now. I have never asked for a prognosis as it felt like I would be living with a use by date over my head, but with stage 4 tnbc I am pretty sure I am well outside initial expectations. Don’t google prognosis - treatments have moved on so much in recent years that a lot of data is out of date. 

Thank you, yes I feel the same way. I don’t want a prognosis either because I’d be constantly thinking about it. I don’t google anything either as it can give misinformation that I just wouldn’t want to deal with. I’m learning to live with this and it’s been difficult from time to time, some of my friends don’t keep in contact anymore. It’s good to talk to people with the same situation as me.

Hi Caro_2468 

welcome to the group, but I am so sorry to hear of your recent diagnosis. It is terrifying to hear those words. I am the same age as you, diagnosed at just 39, then I got the incurable diagnosis 5 years later. I was so very close to hearing those all important words of all clear at the 5 year mark, but cancer had other plans for me. 

It is bloody hard living with this disease, more so when you see your friends out enjoying their lives, and well I’m just too exhausted to join in. I have spoken many times before about how I grieved for my old life, and that grief still creeps up every now and again. I try to not look at how my life should have been and more to the what I can still do, thanks to the treatment. Without it I wouldn’t be here, and I was given a time line. Not by my oncologist but by a very uncaring respiratory consultant who told me I would have 6 months to live. I lived with that news in my head for 2 weeks, before I was able to meet my new sarcoma oncologist who told me that wasn’t the case. She’s still my oncologist now, 12 years later. 

Hello Chellesimo, I’m sorry to hear that about the uncaring respiratory consultant. People can be so unkind sometimes, but well done you it being 12 years later. I know what you mean about the fatigue, it’s so overwhelming sometimes. Unfortunately for me my friends just stopped calling me so I had no choice about being able to join in. I struggle with my mobility as I mentioned earlier the cancer settled in my hip but I have hopes of it improving with exercise that I intend to start. I also grieve my old life but I’m trying so hard to be positive and maybe try to make things better. I love that line “Try to be a rainbow in somebody else’s cloud” and as I said earlier I’m working on trying to see the positives and making a new life despite this horrid disease. You take care Chellesimo and keep being positive.

Hi 

I'm 57 too, with stage 4 renal cancer.  Our kids must be the same age as my youngest graduates in June 2027.  

It's easy for me to say, because my treatment has been a relative success.  But it does get easier over time.  Plus the whole treatment experience is life changing - you never get back to the same mental state you were before, but instead learn to live with the cancer.  

The first summer I couldn't stop thinking about the cancer, and I read so many white papers on treatments and recovery from side effects.  Then I seemed to come of it, I cried less frequently.  The periods of becoming consumed by the cancer became less frequent.  Now I hardly think about it at all.  Also I am at peace with whatever happens as I have come to terms with a life limiting disease.  But it might not turn out that way.  

At the start I just wanted to see both my children independent.  And I was thankful for the time I'd had with them already, even if I didn't make it.  

I notice you say you sometimes feel the shock.  I'm sure most of us on here feel that too.  Totally normal. 

You can read my blog here.

Hi Caro.  I had breast cancer in my left breast in 2013 aged 47.  Had lumpectomy, chemo and radiotherapy.  Got all clear.  In 2024 had hip and back pain.  It turns out have metastatic breast cancer with mets in pelvis, spine, ribs, skull.  I was 59.  I am on targeted therapy and my cancer is stable.  I also had radiotherapy on one of the mets on my spine last year.  I was also very shocked at first and thought that's it my life is over.  How wrong was I.  You can start living now as it does get easier as time goes by.  I go on holiday and walk my dogs.  I am in quite a bit of pain in my spine but keeping active really does help.  I am just a bit slower than before .  You are amongst a good bunch of people on here, it has been so helpful for me and hopefully will be for you too.  

Lee xx

You are an inspiration xx.