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Possible diffuse liver mets

11 REPLIES 11
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Member

Re: Possible diffuse liver mets

Hi ladies, am still in limbo about treatment for these diffuse liver mets. I am getting a ultrasound guided biopsy this week. They are sending tissue away for testing. Do you know what type of tests I will get? Other than the hormone receptors? I have health insurance so I know it is a private company. What will this tell me and does it really matter as they seem to follow a treatment protocol anyway? Just wondering if delay is worth it as I'm off treatmebt completely at the moment.

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Community Champion

Re: Possible diffuse liver mets

Hi Lindyloo

 

we all have a right to have copies of our doctors letters. If you want them, they have to give you them, I get mine, but it’s every month for me, so you need space! I first asked because I found that the wrong info had been given by a Con’s to by gp, not my cancer docs, they are all spot on.

 

if you don’t get them, write or email the onc s pa.

 

best wishes and love to you. I see you are doing lots of support on the forum,  much appreciated Lindyxx

 And, no, I think tax is less of a prob chemo, I too had taxotere but I was much youngerxx

 

There is res to show taxanes are beneficial overall, tho they aren’t nice, I agreex

 

 

M.

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Member

Re: Possible diffuse liver mets

Afternoon Moijan

Thank you for your quick response. I did ask back in September last year but she seemed to sort of beat around the bush. I did ask what size they are as well also if I could have a biopsy. Informed there was not point. I won't be back until March but I will definitely will be asking again. I would rather know exactly what is happening rather than being kept in the dark.

Never seen a copy of any scan results or letters even though I do keep asking. I have probably asked before do you get a copies from your oncologist?

I hope taxol is not as bad as Taxetere which I had back in 2009 which was awful.

Linda

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Community Champion

Re: Possible diffuse liver mets

Hi Mulligans

I have been reading this thread but not had the time it seems to log in and post a reply. Moijan is right about diffuse mets not being able to be targeted by RFA - or indeed stereotactic radiotherapy. My understanding is that a liver met has to be between certain sizes for RFA, too small and they can’t do it and too big they can’t do it, this must be down to the fact that it’s sort of burnt from the inside of the lesion by the probe. I think. Radiotherapy, stereotactic, is only done when there is a small number of lesions, again I don’t know the numbers but over a certain number and they can’t do it, presumably as it would affect too much of the liver itself. Surgery can be offered if the lesion, normally one, is in an area of the liver that can be operated on. Similarly a biopsy can only be done on a lesion that is accessible and, given that there are many blood vessels in the liver, it can be very difficult to have a biopsy. They tend to be done if there is a view that the receptor status of the secondary BCis different to the primary which would mean a different type of chemo etc would be recommended. Most BCs don’t change although some do. I have had two biopsies done, about 4 years apart,  because I insisted on them,  not because I was offered them. I was shown to have changed from HER2- to HER2+ which does make a difference to treatments but in the end it was determined I wasn’t strongly HER2+ so they are now ignoring that part of my pathology- and I understand why.

Hope this helps explain some of the reasons behind certain decisions being made. I have had to learn a huge amount about the liver as I initially had bone mets which were stable for about 5 years but then they spread to my liver. As my oncologist had not expected this to happen I decided to have a biopsy done so we could understand if there were any dramatic changes in receptor status that would have caused it. As it turned out my BC had probably just got resistant to the hormone treatment I had been on rather than anything else.

Nicky x

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Re: Possible diffuse liver mets

Well, when I was diagnosed I. Asked how many? And they explained they were unable to say.and why

 

if you ask they will say...lots don’t ask cos they don’t want to know

 

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Member

Re: Possible diffuse liver mets

Morning Moijan

Can I ask a question how did find out what liver mets you have? Did not realise there are different
types of mets. Think my oncologist likes to keep me in the dark. Will ask next time I see her.

Really hope this new treatment works well for you.

Linda

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Community Champion

Re: Possible diffuse liver mets

Mulligans,

 

i have diffuse liver liver mets and it’s my understanding that they don’t do oblation if like mine they were tiny seed like mets spread through the liver. I don’t think they remove them either. I asked re a biopsy, but my onc has said it wouldn’t make a difference at present. And be very hard to reach as well. It depends where they are.

 

if it helps...I have just started weekly taxol x  three with one week off. And they plan for 6 cycles if it works, then maybe two more.

 

interested to see you had taxotere originally...so did I, when was your original treatment? Mine was 2001.

 

Moijanxx

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Member

Re: Possible diffuse liver mets

Thank you for replying. Today they confirmed diffuse liver mets from pet scan. They are ill defined defuse areas. I feel good and had no symptoms. Bone is stable. I was firing lots of questions about y90 and ablation but he said systemic treatment. Possibly weekly taxol. I originally did fec-t. So that would be dovetail. They are going to do liver biopsy and liver specialist will discuss options with him. He said just because people do other options doesn't mean it's right not in an arrogant way. He said they dont usually do ablation if there is disease anywhere else? Maybe I have too many tiny dots to target? Has anyone had success on weekly taxol? Are diffuse much worse that actual tumours. Couldnt be seen on mri or ct with contrast, just looked shadowy. Pet picked up activity 
Can anyone give me advice on options or what i should be asking?

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Community Champion

Re: Possible diffuse liver mets

I have diffuse liver mets, forgot to mention that.

 

was just wondering what previous treatment you had had? There are lots of drugs they can try and some are well controlled.

 

Moijanxx

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Community Champion

Re: Possible diffuse liver mets

Hi. Mulligan, were you previously treated with docetaxel or paclitaxel

?

 

moijanxx

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Community Champion

Re: Possible diffuse liver mets

Hi mulligans -sorry to hear you are worrying about potential liver mets. Quite a few of us do have liver mets although there’s not an active Liver  Mets thread being used at the moment. A lot of us post on the Bone Mets thread as we often have bone mets as well.

I was dx with bone mets in 2008 and then, after nearly 5 years of stability,was dx with liver mets as well. When dx I did ask about where my liver mets were and they were distributed around my liver,about 4 or 5 of them. Over time they have sometimes grown, when treatments haven’t been effective, or have stopped being effective, or have shrunk with some of them disappearing altogether. Systemic treatment such as chemo, hormonal andHerceptin (if you are HER2+) will treat the whole of the liver (as well as your bone mets). However by having diffuse mets (by that I’m assuming yours are distributed around the liver rather than in one place)  it would mean that other treatment options such as surgery or RFA or radiotherapy would unlike to be used. Having said that if the systemic treatment gets rid of some of the mets and there’s only say one remaining it is possible that surgery, or the other targeted options, would be considered. 

A few ladies on here have had targeted treatments , I was going to have RFA (radio frequency ablation) a while back but an MRI showed up some micro mets so it was decided I wouldn’t benefit from the procedure, but the majority of us are treated with systemic treatments.

I hope this helps but do co,e back with any more questions you might have, hopefully someone else can offer their experiences as well.

Nicky x

Member

Possible diffuse liver mets

Hi I just wondering if anyone can help. I have bone mets and been doing well for 20 months on various treatments. Latest ct with contrast and mri show unidentified diffuse area on liver. They can't rule out cancer. Waiting on PET scan. Has anyone any experience with diffuse liver mets. I am scaring myself as from what i read they look difficult to treat. I feel very well and am generally very healthy. Can anyone with liver mets help and what might treatment options be