New liver Mets😢

[Julesdubai]

Diagnosed 2014 ER positive breast cancer, mastectomy RHS chemo and 5 years on aromasin. 2020 diagnosed Mets in sternum, ribs and spine 10 rounds of radiation and faslodex, ibrance and xgeva with fantastic results. So new liver Mets have appeared after my tumours in my bones are stable. Shocked and so sad. My oncologist here in Cyprus wants to change my meds to aromasin and avintor and to have a CT and an MRI but I've just had a PET scan? Then go straight to TARE radio embolisation which is hugely expensive. My oncologist in Dubai wants me to have a biopsy before any changes to medication or treatment options but Cyprus doesn't agree. My head is scrambled. Unfortunately if I don't follow Cyprus treatment plan he can refuse to treat me anymore ....... Am I being seen as a 'cash cow' 😶 anyone been through the same and what treatment plan is now working for you? Thanks ladies xx

[Bettybuckets]

hello dear, so sorry for the new liver Mets which is always a shock. I also have a team in usa and another in New Zealand and have to balance the two trains of thought that I get as advice.

I got that same news 3 months ago at Xmas when I heard about my bone only had spread to my liver also after nearly 3 years on Ibrance.

Then had to switch to capecitabine… no scan yet but appears to be less bloating etc. my liver Mets are scatter shot meaning I was not able to be offered the radio embolization… because I don’t have one or two lesions but lots of small ones that they call scatter shot.

I would go for the cooking them like youve been offered. I would not want to take the risk and pain of a liver biopsy as it would not be likely to provide further information needed to treat the liver spread. But I wouldn’t be afraid of PET followed by

CT scan- as twice now I have had both in the same week and the radiologist said thst would be no problem. I was worried but like you I needed both. They prob need a clearer picture to do the emolization.

Afinitor and aromasin- your Cyprus oncs choice is a fair option… but I just wonder why he would suggest aromasin which you have previously been on for 5 years- and is part of your treatment failure.

My boston oncologist switched both drugs when I progressed…rather than switch just one (since he said he can’t be sure which one failed)meaning not just your Ibrance could have failed but also your Aromatase inhibitor may be the reason for liver spread. So since - there are 3 AI’s to chose from and since you spent 5 years on one (aromasin)and now liver Mets, it seems reasonable to switch to affinitor and letrozole or afinator and arimidex. I would just ask him to clarify why he thinks Aromasin is best in this case vs a different one. I hope that is helpful.

[Shafight in reply to Bettybuckets]

I too have liver Mets after being stable for 18 mo with Ibrance and fulvesant. I just had a liver biopsy and it was nothing. Don’t worry if you choose this path

[TammyCross in reply to Bettybuckets]

Sounds like she was on aromasin from 2014 to 2019, then stopped, and in 2020 got metastasis. So maybe doc was thinking it worked before, try it again? That is what my onc did (Arimidex for 5 years after primary cancer, then 6 years with nothing until mets, did Ibrance + fulvestrant, so when fulvestrant failed, back on Arimidex because there was no reason to think it didn't work).

[purplelikep]

I've had two liver biopsies and it was a fairly straight forward procedure. We were able to find out my cancer became Her2+ when I was Her2- before so it was the right call for me. Now that I'm on Her2 treatment, I'm stable and things are working for now. Best of luck to you! <3

[13plus in reply to purplelikep]

do you be know how big was the lesion they biopsied? I’m literally sitting waiting for my doc now after scans last week. I have the same stable bones but liver Mets are slightly larger. Originally they said they were too small to biopsy and it was too risky for me.

[LDR1]

Hi Jules, I also had recent progression to the liver so I understand your shock. I’m being treated at Dana Farber in USA and had initially started off on Ibrance then Verzenio. When the liver happened they put me on Xeloda (capecetabine) which so far is generating good results and shrinking the spots. I’ve heard from others on here who have also had good results with Xeloda for the liver. Hope you can find a good path forward on medical treatment, and keep the faith that you can stabilize this new development and continue living your life <3

[Hidden in reply to LDR1]

Hi,

I am also treated at Dana Farber. Just had scans today, and looks like I have Mets to liver. Bone only until now. I see Dr. Lin on Monday and I’m sure will hear what the next steps are. My question is, did you have a liver biopsy? Did your cancer change, for example from Her2- to Her2 +?

Thanks,

Nancy

[Julesdubai in reply to Hidden]

Hi NancyNo I've not had a liver biopsy as my oncologist in Cyprus said I had to try Afinitor and Aromasin for 3 months first? Hopefully this will work and the tumours do not grow 🤞 If the treatment doesn't stop them growing I will have a biopsy to determine if the hormone receptors have changed from positive to negative. He's told me the only treatment option then is chemotherapy which I had a terrible time with last time 😢 so praying lots 🙏I'll say an extra special prayer for you too. Positive vibes and hugs being sent your way for Monday X💜X💜

[Kerryd22]

I was on Afinitor and Aromasin for ten months. I had to stop the Afinitor because of liver inflammation but I’m still on Exemestane six years later.

I am having a CT scan in the suite that also does PET scans so I asked why I couldn’t just have the PET scan instead of the CT and bone scan. The answer was that the PET scan wasn’t the best option for my Mets. I have bone Mets only at this stage. Originally I had CT scans and an MRI but they stopped the MRI (although I did get a brain MRI done when they suspected I might have had brain Mets.) There’s a six month wait for MRIs at the hospital I attend so I don’t know if that played a part in the change but I was assured that the option they do now gives them better data than a PET scan.

I don’t know if you’re a cash cow to the doctors but it’s not impossible that you are. My opinion is that you should follow the Cyprus doctor. I always prefer immediate action. None of this waiting and seeing what happens for me! What’s a biopsy going to tell you? If the liver tumours aren’t ER+ then the Afinitor and Aromasin won’t work but that will show up as progression, very quickly, but as he plans to ablate the liver Mets that’s less of a concern. And changing from ER+ to ER- isn’t that common.

I have no idea what the health system in Cyprus is like. Is there financial assistance available to help you afford the TARE? I don’t know what that is as we don’t have it or I haven’t heard of anyone who has had it anyway.

All the best

Kerry

[MegandOllie]

Hi Jules, I recently had similar progression as yours. I’ve been on Ibrance and faslodex almost three years for bone only Mets. Then last June spread to my liver. My CT showed only one tumor so my oncologist advised to do ablation and continue with same treatment as I had been doing. Treat the tumor as an anomaly for now. When they did the ablation they also took tissue for the biopsy. Biopsy showed same ER positive characteristics as my original Mets. So nine months out now, I’ve had two more CTs of abdomen and bone scans and all are stable. Still on Ibrance and faslodex which I am happy about. The ablation was a pretty simple procedure and easy recovery. It has given me as least another year of stable disease. Good luck whatever you do!

[13plus in reply to MegandOllie]

this is an interesting journey you have here. That’s so great that you’ve been able to stay on iBrance and just have that one procedure which dealt with your liver effectively! I’m waiting to meet my doc right now. At a cross roads as I saw test results that liver Mets slightly increased (scatter shot so cannot ablate) where as bone Mets are stable . It’s a frustrating situation!

[Laskia]

I've just found myself in exactly the same position. I've been stable on palbociclib and letrazole for 18 months, but suddenly a 1cm lesion appeared in the liver. They attempted liver biopsy but didn't get enough tissue. Since then, two more lesions have appeared and the 1cm has grown to 1.7cm.

My bones and lungs have shown no progression so they need to biopsy again to see what the next course of treatment should be otherwise they are just guessing. There is a chance the original cancer could have changed receptor status. Not looking forward to the liver biopsy, but will feel better knowing what they are dealing with.

Its a very anxious time for us.

[Hazelgreen]

Hi Jules,

If I were you, I'd go with the Dubai oncologist's less expensive plan. A liver biopsy is a simple procedure which I found involved very little pain. There may be no need to change your current treatment plan.

I have extensive mets which include my liver. A liver biopsy in May 2021 indicated that the cancer there is ER+ as is the cancer in my other sites. Since my bloodwork indicated that my liver was functioning well (liver enzymes in the normal range), my oncologist suggested that we simply continue with my regular treatment. I currently take letrozole with 600 mg ribociclib, and this seems to be stopping any growth of my many mets. I am able to function relatively well for a woman of my age (77 years).

Best of wishes for your continued well-being, Cindy