Just diagnosed

Hello Harleybear 

I am so sorry to read that the TNBC has returned, you have had plenty of "hugs" but no replies. by me responding to your post (I can't talk about it as I have a different cancer!) it will be "bumped" back to the top of the forum and be seen by other Community members who should respond.

I wish you well on your "new journey"

Best wishes - Brian.

Hi Harleybear, 

I read your earlier posts about your symptoms and thinking Gosh, you sound like me before receiving my news that Tnbc returned after 18 months from being 'successfully' treated. It is surreal, I know, to have it back in no time. To me, it came back in a rage with mets in liver, bones and liver. I was very poorly and in a lot of pain before I started chemo - Paclitaxel - but now I feel fine and thinking to return to work. The doctors helped me manage the pain, now I feel normal again. Of course, TNBC doesn't play according to the rules, but I hope that the Paclitaxel will be effective for a looong time and that I will be around for few more years as the other ladies in this forum are. I have little children, so all I wish for is to stay alive for as long as possible. Stay strong Harleybear!

One thing - the oncologist tried to put me on a trial but it took weeks and weeks of waiting - why does it take so long?! Who with Stage 4 Tnbc has that time to wait? After 4 weeks the oncologist said that we need to get started and I got the paclitaxel.

Hi thanks for your reply and I’m sorry to hear you too had this bloody awful disease spread . I think in my soul  I knew it wasn’t done with me yet , but still a shock .    Can I ask did they find out about your bone meta wirh a CT aa mine just picked up the lung and liver and I am having a bone scan Tuesday .  I originally went back to see them because of the hip pain do I was so surprised when it was liver and lungs .  I need to find a reason for this awful pain .   

This time before treatment starts is awful .   I have developed an awful cold and now have a stomach bug . Least that’s what I think it is , my head just goes to the worst place and I imagine that this is the cancer killing me now .  

Hope the treatment for you continues to work and glad you feel able to go back to work .  I am older than you and am considering retiring on ill health grounds now . 

I had the CT and the Pet scans done one after the other, so together they showed bones, lungs and liver. The GP worked with me on the pain and we got on top of it, the GP was very helpful on this occasion. I've been taking antidepressants for a while now and these + counselling via Macmillan help me to float rather than sink on the bottom of the ocean. Yeap, just like you, I knew that the beast will return but I didn't expect it that soon. Also, I had double mastectomy, all clear, all scans showed no sign of cancer, so I don't know how it spread. 

No I know what you mean . I didn’t even have lymph nodes involved so how the hell did this get around my body .   How often do you have treatment now ? Are the side effects manageable.  They have suggested a trial for me if the immunotherapy is not an a option .  I don’t even see my oncologist until 19th Feb , which feels ages . Xxx

Why does it take so long to see the oncologist?! Perhaps your GP could give the oncologist a call and fight your corner.

I am having weekly chemo for now. Side effects are non existent for now, I actually feel better compared to how I was before starting chemo. 

Immunotherapy didn't work for me. 

Good luck, I hope that all goes well. 

Hi Harleybear 

I am sorry to see you have joined the secondary club. I remember seeing your posts when I was first diagnosed with TNBC at the beginning of 2022. My own secondary diagnosis arrived for me whilst I was still having adjuvant chemo following the primary diagnosis. I was perhaps lucky that I had a CT scan for something else, and it was picked up from that. Like you, there had been nothing in my lymph nodes but I did have vascular invasion at the original tumour site. My oncologist thinks I probably already had the first liver lesion at the time of my original diagnosis, but I hadn’t been scanned, so no one knew. So I have been living with mets in my liver for at least 18 months. It’s been manageable although not a smooth journey.

Treatment at this stage is likely to depend on whether your tumour tests positive for one of the various immunotherapy drugs they have. Mine did, and the immunotherapy reduced the cancer load a lot, but also led to an immunotherapy related adverse event which has caused me a raft of other problems. Sort of good luck and bad luck combined. 

wishing you all the best. 

My Daughter was diagnosed with Lobular last July, after lumpectomy and 9 week radiotherapy and now on Tamoxifen, clear SLN and very low Oncotest. 

Totally shocked to discover the pain upper right tummy which started 5 weeks ago has now been found to be tumours on her liver. She had a biopsy on liver last monday but the results are not yet in. We are terrified at the speed of the pain increasing and currently it all feels totally hopeless. 4 weeks ago she was at the gym 3 times a week before working full time and then running and caring for her two daughters as a single mum.

We need hope, is it usual for the pain to increase so badly so quickly? it has happened so quickly that there is no pain management at the moment and it has been left to us to research and request certain drugs, we feel lost and alone.

Huigs to everyone

Mum

xxxxxxx

So sorry to hear of your daughter’s tumours. I haven’t experienced any pain as yet so unfortunately don’t have any insight into how it progresses or how best to manage it. I hope she can get some answers. 

Hi x I also have a lobular breast cancer with spread to the liver. I am so sorry to hear that your daughter is in pain . I m no expert but has the pain started after the biopsy ? After my biopsy I have experienced pain in the area . Have you spoken to the hospital in case its related ? 

I do hope it all settles soon xxx