7 mths down the line from secondry breast cancer in the bone

Hi Babs2k 

I also have secondary breast cancer and totally understand the frustration of having incurable cancer and the treadmill of ongoing treatment. I have a different kind of breast cancer so don’t have personal experience of the treatments you are on, but my understanding is it’s very effective at controlling cancer for many people. So please don’t give up on the idea you have a future. It may be different from what you expected but hopefully your cancer can continue to be managed and the side effects will be ok. 

Hi Babs I know exactly how you feel. My secondary breast cancer has gone into my lymph nodes, liver, lungs and pleauria.

I 1st had breast cancer in 2017. Mine also is not curable but treatable. I was diagnosed in Oct 2025 andi am  having problems trying to get on the right treatment.

I am very worried and I don't want a prognosis. I just want to be on treatment for as long as possible and try to get on with living.

It's comforting to know that I am not the only one going through this. 

Keep fighting.

Pauline 

Hi Rosepetal how are you today? I hope you're well.

Just finished reading all you lovely ladies messages 

I was diagnosed with Lobular Breast Cancer in February 25 & then with metastatic in May 25 after many CTs, MRIs, breast biopsies & the worst one, a Bone biopsy from my pelvis. It really is a shocker isn't it, finding out we have incurable cancer.

I have my bloods taken the day before I collect Ribociclib, Adcal D3, Loperamide & have a Denosumab Injection. My prescription for Letrozole I get from my GP monthly.

The side effects aren't pleasant are they. I had to reduce the Ribociclib dosage from 600mg daily to 400mg. Aside from the anxiety, many upset stomach, hair shedding, dry skin, low mood, I find the fatigue to be unmanageable really. Even on the lower Ribo dosage I still struggle terribly with fatigue but I'm too frightened to lower it further. Thankfully up to now my bloods have been okay 

I am considering asking my GP for pain relief. The top of my spine/back of neck, both pelvis & the bottom of my back have become quite painful because of the cancer. Would anybody be able to advise on what works well for them please?

I am so grateful for this forum. Being able to contact ladies in very similar circumstances is such a help for me & I hope it helps others too.

Take care ladies X

Hi Babs2k

I really hope you're feeling a lot better today.

I understand totally. The monthly bloods being taken & then if blood results okay, going back the following day for injections & picking up meds. It can make you feel that it's a constant reminder of having incurable cancer. Not that we forget very often but I understand what you're saying, there's no light at the end of the tunnel sadly.

I have to remind myself to be super grateful that the service is there for us, to help & hopefully keep us living longer & living well.

I have not asked my Oncologist "approximately how long" as I'm not brave enough haha but when I first met him & he had given me the bad news he told me that people can live for many years with bone cancer. I have tightly hung onto those words as seconds before he told me that, I honestly thought he was going to say I had a year or two left!!

Sending love & hugs 

We must keep fighting!!

Take care X

Hi lokidog 

I am not brave enough to ask how long. When I was told that I had incurable breast cancer I was devastated. I thought that I may only have a year or two. 

Now I just want to get settled on treatment so that I can try and get on with living. At the moment I am visiting the hospital weekly for blood tests. It is reassuring to read that there are people out there living with cancer for many years.

Keep strong.

Sending lots of hugs. 

Pauline 

I have been diagnosed with 
metastatic triple negative breast cancer. Is there anyone else who has been living with this and for how long? 

Take care & be strong 

Sending love & hugs

Hi Pink1988 

I am sorry you have been diagnosed with metastatic TNBC. I can only speak for myself - I have been living with this since 2022 and am well. 

Thank you for your response.Do you also have triple negative breast cancer? 

Sorry can I ask if you had chemo and immunotherapy or just chemo. 
I have been told in my case I will have a weekly dose of paclitaxel until this no longer works. Immunotherapy will not work with the type of cancer I have.