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Newly diagnosed liver mets

14 REPLIES 14
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Re: Newly diagnosed liver mets

Thank you all for your messages. I actually got to see an oncologist on Friday and I didn't think the news was as bad as I expected. She started me on Letrozole that evening and I am going to start oral chemo Palbociclib next week hopefully.

She said I would continue that treatment till it stopped working and then they would change it to something else. She also said she hoped I would have years left and not months which was my worry.

I was on cloud nine when I came out of the appointment but then it sunk in that I would be taking this or something like it for the remainder of my life whereas I was expecting maybe 6 cycles of chemo. i'm sure there are alot of you ladies that have been taking this for a long time but it is just the fear of the unknown.

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Member

Re: Newly diagnosed liver mets

Hi

much empathy for what you are going through. Does your GP know that you have not even been given a date or name of Oncologist for your appointment yet? What kind of Consultant did you see who arranged for your PET scan and liver biopsy?

Think if I was in your situation, I would get in touch with your GP and explain. They could, perhaps, ring the Consultant directly? 

Was the nurse you spoke to a Breast Care Nurse? I would ring again and explain how concerned you are about starting treatment ASAP. Ask if she is able to contact the Consultant or his secretary for you. You are right to keep chasing! Thinking of you. P

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Re: Newly diagnosed liver mets

i also agree with if you dont ask you dont get its very easy to get lost in the system i have had to be the 'pest' a few times but its so important we look out for ourselves I always take a list and give the secretary a nudge when needed I have made it clear that i will always speak up when  needed and wouldnt be afraid to ask for a second opinion although im happy with my onco 

Im pleased you have had some answers x

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Re: Newly diagnosed liver mets

At last I my appointment arrived today. It is next Friday so still a week to wait but at least I know I am in the system now. Thank you all for your concerns. I just hope they can offer me some treatment

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Member

Re: Newly diagnosed liver mets

Ditto to everything said.... the oncologists are looking after hundreds of patient there is “ only me looking after me” ... it isn’t easy to question their opinions and it can be intimidating, but it’s only by being educated and informed about our diagnosis that we can challenge them. Ask for second opinions, change oncologists, change hospitals... do whatever is necessary to get what you need. God knows we shouldn’t have to do this on top of everything we are going through but it’s the nature of the NHS, they are underfunded and understaffed. However I have found that “if I ask... I get” .

xxx

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Member

Re: Newly diagnosed liver mets

Very well said Nicky! It's hard to be forceful, particularly when you are in a strange and scary place after diagnosis. I try to make sure that I am as well informed and politely persistent as possible, my view being that I owe it to my family as well as myself to stay on the planet. No Doctor is going to care as much about me as I do!

I'd also recommend getting in touch with PALS, they can move things along with your team. This is no reflection on my hospital, they are brilliant but I did help a friend in another hospital. Best of luck with your forthcoming treatments everyone x

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Community Champion

Re: Newly diagnosed liver mets

Hi to all of you having problems with your appointments and treatments

I would say the wait you’ve had is totally unacceptable. I have been living with bone mets for 11 years, with liver mets for the past 6 years and never had anything like such a long delay. Especially when it’s after an initial diagnosis of mets. I do know that the MDT will want all the facts before deciding which treatment to put you on but 11 weeks does seem excessive and the fact that secretaries are not responding to messages is bad. I hate to say it but you do need to keep harassing them until you get an answer of some sort, an appointment time would be a good place to start! As you have all said the waiting is such an awful time when you know you have a secondary diagnosis and so often the medical team involved doesn’t seem to recognise this. I’ve always had as one of my saying that this isn’t a dress rehearsal, this is it, so if I have to be a pain in the butt to the oncology unit then so be it, it’s my life, not theirs, so I have to do what I can to get the best treatment for me. And by ‘me’ I also mean ‘you’. If, once you do get answers and you’re not happy with them you are entitled to a second opinion. I have had several of these over the years and gone to The Marsden as it’s the closest specialty cancer hospital near me to find out if my local hospital is giving me the right treatment. I have always been treated locally but a back up review can always help. 

Once you do get to know what your particular oncology department has issues with such as not confirming appointment times make sure you get everything confirmed for the next appointment, again, I’ve had to do this if I’ve waited before for some information.

I do know it is not how it should be and very exhausting have to chase around, and we shouldn’t have to do it but sometimes they all need a kick up the backside to realise who is the patient here.

Good luck all

Nicky x

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Member

Re: Newly diagnosed liver mets

Morning Potter 1

I did speak to PALS weeks ago. My GP referred me to a liver specialist 10 weeks ago. They decided that as the CT report said breast secondaries they wouldn't see me and referred me to the breast team. He said he had no idea why I been referred to them and wrote a letter referring me back to the liver team. I popped into the PALS office and queried why the letter was taking so long and it took over a week for the secretary to even type the letter and then another week for the letter to be verified by the consultant. The young man in the PALS office did speak to the secretary involved and things moved on. I wondered whether to go back to PALS but I didn't want to be that person that everyone thought was a pain before I even start my treatment. Lets hope  the post brings an appointment today

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Member

Re: Newly diagnosed liver mets

I can understand fully what you are saying.The phone calls.They say we will phone back but no phone call.They gave me an appointment but no time,stating that they where to busy to give time,

it is mental torture.What I Did was phone morning noon and night they soon new my name,

phone call Friday to say Zometa will be going ahead today.

This mess had went on for Three weeks.

So keep trying don’t let them mess you about,this is for your treatment.

You are not asking for anything you don’t deserve.

Breast Care Nurses said they could not get involved as this was not their department!!!

xxx

 

 

 

 

 

 

 

 

 

 

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Member

Re: Newly diagnosed liver mets

This lack of response by staff is unacceptable.you are quite understandably upset

perhaps talk to pals department at your hospital ,they seem to get things moving 

all the best

xx

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Member

Re: Newly diagnosed liver mets

Thank you for your responses. I am in England. I spoke to a secretary last Wednesday. She told me they were due to discuss me at Thursdays meeting and she would phone me to let me know what was said when the meeting finished as she was due to be present. She didn't ring Thursday or Friday despite me leaving a voicemail message. I phoned again today and left another message and she still hasn't phoned. Do people not realise how cruel it is. I don't want to go out in case they phone when I am driving and I miss the call. I am just hoping I get a call tomorrow 

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Re: Newly diagnosed liver mets

Hi,

 

are you in scotland.

I to have been experiencing that the people you rely on at this awful time,don’t seem to get,that we are at our wits end trying to come to terms with this diagnosis,and they are supposed to be our life line,for treatment.They say that they have a treatment plan or they will have a treatment plan for us,then no correspondence unless you do the work.I am on my second cycle of Palbociclib and I am the one making phone calls to see when next appointments are due,for bone strengthener,etc we have enough to worry about,trying not to stress ourselves out,I wish some would go for medical training so as they maybe would understand,just a little,why we become anxious when our treatment does not begin. 

I can say this you are not along at being anxious,or dissatisfied with medical staff.I was at a breastcare meeting and a few of the ladies are in the same situation,I think something really needs to be highlighted,at the lack of awareness of Secondary Breast Cancer.

xxxxx

 

 

 

 

 

 

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Member

Re: Newly diagnosed liver mets

Hi disney

how hard for you .i am in similar position but my liver mets have come very quickly after bc diagnosis ,mastectomy,chemo and radio and letrozole tablets 

diagnosed bc ,2017 Nov ,

liver mets found April 2019 

because I was in the system ,being checked regularly ,my treatment progressed quickly ,my liver mets are inoperable too

 

you must be proactive and push for your appointment,once you have your onc  appointment and a plan you ŵill feel better

positive thoughts 

xxxx

janet

my bc is oestrogen positive ,I am post menapausal ,I am having abemaciclib and fulvestrant as second line treatment,

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Member

Re: Newly diagnosed liver mets

Hi just wanted to reach out, Im sorry you have a secondry diagnosis it seems a lifetime waiting for appoinments etc its a scary time for us in the meantime I hope you are getting plenty of support have you a Maggies centre as they have excellant support groups and counselling

i was diagnosed the end of Jan this year have not had any treatments yet but under very close watching will be starting in the near future I have found being able to attend Maggies has helped me massively we are all different as treatments  are different so try not to worry too much, once you have an oncology app things will be clearer 

Take care x

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Newly diagnosed liver mets

I was called to my GP 10 weeks ago to be told the results of a CT scan of the liver showed extensive malignant liver metastases. I had a previous lumpectomy 11 years ago. There was no node involvement and I had course of radiotherapy so was totally shocked when they said it could be a breast secondary. I saw a consultant who arranged a PET scan and liver biopsy. I eventually managed to speak to a nurse on the phone 2 weeks ago who told me that the biopsy did show breast secondaries and that it was inoperable.

I have had a couple of episodes of severe shoulder pain and I am in constant pain in my neck and head. I know the shoulder pain is referred pain from the liver but I don't understand what the head pain is. The bone scan was clear.

My main worry is I'm not getting any support at all. I was told I was discussed at the liver MDT meeting 2 weeks ago and then at the breast MDT meeting last week and I am waiting for an oncology appointment but I am having to keep chasing. No one has been in touch. Its been so hard to have been given this diagnosis 10 weeks ago and I still don't know if they are intending to give me treatment. Sorry for the rant but is anyone else having to wait so long to find out about treatment. I am trying so hard to be positive but it is difficult when I don't know what I am facing.