Waiting Time

Liver, secondary cancer

Secondary liver cancer is cancer that has spread to the liver from a primary cancer somewhere else in the body. This group is for people affected by secondary liver cancer to share experiences and get support.

Waiting Time

No. of entries: 4 | No.of favourites: 0 | Posted on 31 Dec 2012 04:32
  • How long on average do you have to wait for to find out what type of cancer is causing your secondary liver cancer.

    I am pulling my hair out with the medical profession thinking that they can tell us that we have something wrong with us and then leave us hanging in the air waiting for them to make the decision about what treatment they are going to give. 

    This is my 5th round of cancer so I am not a novice but never. in the other 4 has it taken 6 weeks to find out what the treatment is going to be.  They told me on the 14th November that I had a liver lesion - eventually biopsy taken on the 16th December and now they have the results of that biopsy they will not have their MDT meeting on the 3rd Jan but only  if there are enough Dr back from holiday, if not it will be the 8th. After that I will propbably have to wait another week for them to send out a letter with an appointment for a weeks time so hopefully by the end of January I can be told officially that I have secondary liver cancer.  Just to add do they think we are so stupid that we can not work out if they are sending it to an MDT meeting then there is cancer there?

    In the mean time I am ending up a mental wreck, taking diazapan and an anti depressent to try and get me to function in between crying and loosing my temper with my lovely sweet  husband who is also quietly cracking up trying to support me

    If I have one more friend or relative that says to me "that it won't be long till you find out" I think that I will throw them out.  Only joking but can they not see it is hard enough trying to keep going without comming out with platitudes that mean nothing.  

     

    Nearly 3 years ago I was diagnosed with Anal cancer.  Just as I was about to start my treatment they told me I had Breast Cancer, but it was small so they would treat that after I had finished my first lot of treatment., In the November my husband found a Melanoma on my back which was cut out.  As everyone says you get quite anxious when you go for your check-ups but on the 2nd anniversary my oncologist told me that I was 80% cured but as a mater of routine he would organise a scan which he did. 

    I was not unduly concerned so what a shock when I was told I had a 2.5cm liver lesion.   After I had a PET scan they said there was increased FDG accumulation in the stomach so they would do a scope.  After the scope the Dr said that he had not seen anything but took 3 biopsies.  I spoke to my GP and asked him to go through the results of the scan, as I could not remember a lot of what the consultant had said, this revealed 4 areas of concern 2 of which I had never been told about. 

    My head is all over the place, as everyone says they have to note everything down to cover themselves but I am feeling exceedingly sorry for myself and wondering if this will be my last Christmas.  Four weeks on there is still no appointment for the liver specialist, the wonderful local Macmillan Nurse has managed to get a referral to the breast clinic after I asked what was being done about the other areas of concern and hopefully I should get the results for my stomach within the next week but I don't know what they will do about the colon (if anything) which they say is physiological.  

    Why of why can they not have the appointments for any further referrals/ treatment in place when they break the bad news to you.  I feel this would take some of the stress away as you would not be in limbo waiting for appointments, waiting for results and then getting started on your treatment.   

    I have found this round really hard to deal with and have been so angry.  I annoys me that I don’t know what I am dealing with and that other people have all this control over my condition.  

  • Hi Ness Frog ,

    Sorry that there has been no replies. It gets a bit quiet round here.

    I can imagine that you have used up your resources dealing with so much in the past and I agree that it does not seem to get easier.

    It must be very hard waiting for results during holiday periods.

    I know with my mum 's liver involvement they always like certain liver surgeons present for a better evaluation of her treatment options. You could ask your GP to try an access the results of the MDT meeting earlier. I know where we live her GP is always lettered in quickly and the results put on the portal system.

    Thinking of you,

    Kind regards,

    Court

  • Court

    Thanks for your email.

    How is your mum's treatment going?


    The whole thing has been made more difficult because we opted to stay in Aberdeen hoping this would speed things up but you are right if I had been at home in Shetland my Dr would have been able to access the results of the biopsy.  After pestering I did find out that the MDT was held yesterday and I now have an appointment for the 10th so i am trying to fill up my days by doing something positive every day. 
    Had a phone call from the secretary they want me to have another scan. When I asked why and how long it would take?  She said" it would be discussed at my appointment and the scan would be fast tracked, so about a fortnight".   I am now left wondering what this is about but I will not be hanging about Aberdeen as soon as I have attended the appointment on the 10th I am going back to Shetland. I can not understand how they could not have just made the appointment for the scan and told me next week.  Now I am back up in the air with my mind running riot. 
     
    Once I have seen the specialist and know what I am dealing with.  When you have that information youI can take a chunk at a time and fight the fight.  That is how I have tackled it previously.

    Thanks again

    Shirley

    Nearly 3 years ago I was diagnosed with Anal cancer.  Just as I was about to start my treatment they told me I had Breast Cancer, but it was small so they would treat that after I had finished my first lot of treatment., In the November my husband found a Melanoma on my back which was cut out.  As everyone says you get quite anxious when you go for your check-ups but on the 2nd anniversary my oncologist told me that I was 80% cured but as a mater of routine he would organise a scan which he did. 

    I was not unduly concerned so what a shock when I was told I had a 2.5cm liver lesion.   After I had a PET scan they said there was increased FDG accumulation in the stomach so they would do a scope.  After the scope the Dr said that he had not seen anything but took 3 biopsies.  I spoke to my GP and asked him to go through the results of the scan, as I could not remember a lot of what the consultant had said, this revealed 4 areas of concern 2 of which I had never been told about. 

    My head is all over the place, as everyone says they have to note everything down to cover themselves but I am feeling exceedingly sorry for myself and wondering if this will be my last Christmas.  Four weeks on there is still no appointment for the liver specialist, the wonderful local Macmillan Nurse has managed to get a referral to the breast clinic after I asked what was being done about the other areas of concern and hopefully I should get the results for my stomach within the next week but I don't know what they will do about the colon (if anything) which they say is physiological.  

    Why of why can they not have the appointments for any further referrals/ treatment in place when they break the bad news to you.  I feel this would take some of the stress away as you would not be in limbo waiting for appointments, waiting for results and then getting started on your treatment.   

    I have found this round really hard to deal with and have been so angry.  I annoys me that I don’t know what I am dealing with and that other people have all this control over my condition.  

  • Hi Shirley,

    Thats really tough being away from home. My mum's friend is treated in Aberdeen and they seem to be good clinically but a little slow. My mum has had two liver surgeries and both times they requested additional scans. In her case they were to provide more information for the surgeon to use during surgery. I agree that once you understand why a scan has been requested it reduces the anxiety. They were requested both times following MDT meetings.

    My mum has had quite a lot of liver involvement so it was all a bit more straghtforward. It would amaze you the amount of people that have things show on scans that turm out to be nothing. However in our case it was most definitely cancer. She has five tumours the first year and four the next. She was referred to the specialist liver unit in Edinburgh (worth the travel). They did a fantastic job for her and she has been treatment free for two years.

    I hope you get your plan soon and get this removed early 2013 and back to enjoying your life. The scanning was the slow bit. However both times the surgery followed really quickly.

    Kind regards,

    Court

     

     

     

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