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Palmbeachprince's avatar
Palmbeachprince
Member
6 years ago

Second opinion

Hi all

Long story but the shorter version is my oncologist did not act on my increasing ca15.3 blood marker levels which had been steadily rising over 6 months. 
So i , bothered by their increase got a second opinion. Well thank goodness I did. 
Firstly, My new oncologist could not believe my bloods levels were not acted upon. But most importantly whilst reviewing all my old scans against my most recent one last week, he noted a spot in my liver existed back in May that my old oncologist had MISSED completely which has now grown. This is the reason for my increase in tumour marker reading. 
Absolutely disgusting. I am now on new drugs abemaciclib which I just this morning paid $7,000 for and will do each month. 
. 
Anyway my reason for posting is to follow your intuition.  I knew something was nt right with my tumour marker. 

Ps I also got a third opinion and again absolutely shocked and he apologised for my 1st oncologists huge mistake. Thankfully he has agreed with my new oncologist that the pathway I am now on is the correct one.

am feeling so angry and am wanting to take legal advice so my old oncologist is held accountable. And she never overlooks another patients scan results or blood markers again

second-opinion
  • Lisa1407's avatar
    Lisa1407
    Member
    6 years ago
    Sorry to hear that your liver met was missed by your oncologist. Is this liver met your first? If it isn't, there is not much you can do from a legal perspective as the 'mistake' has to have had an effect on your prognosis/treatment which I don't think you could argue if already had mets. In this case, I think the best thing is to save your energy, but write as many complaint letters as you can too vent.

    I explored the legal perspective a bit myself as I had been seeing a physiotherapist for over 12 months with hip pain and she couldn't understand what was going on. Went fro my routine mammogram and had two large breast tumours and low and behold the PET scan revealed multiple tumours in and around my hip. I was told that the prognosis or treatment would not be any different if the bone mets had of been found initially or at the time they were found 12 months later.

    It is annoying as it seems so wrong!!

    Xx
  • Palmbeachprince's avatar
    Palmbeachprince
    Member
    6 years ago
    I know, agree we do all make mistakes for sure. But this is way more than a mistake. 

    Half of me does not have the energy to go down the legal path. But then I think no you will be made accountable, this will not be ignored. 

    Xx


  • kmakm's avatar
    kmakm
    Member
    6 years ago
    Absolutely disgraceful. Sure, doctors are human and make mistakes, but to willfully ignore a red flag, and one that was clearly worrying the patient is patently wrong. And I thought that scans were supposed to be looked at by more than one set of expert eyes. A MDT surely would have caught this if the scans had been presented?? Sic 'em Rex! Go for the jugular. K xox
  • Palmbeachprince's avatar
    Palmbeachprince
    Member
    6 years ago
    Thank you for your replies. 
    Yes I will certainly write to the mentioned bodies. 
    My new oncologist is helping me get the abemaciclib on compassionate grounds. 

    Xx love to all you amazing ladies 💖
  • arpie's avatar
    arpie
    Member
    6 years ago
    OMG!  That's so upsetting when stuff is missed, that in hindsight, others pick up.  Specially the liver spot!

    Perhaps a letter to the Medical Association/Hospital she works from would be in order, expressing your disappointment - just so it is on record!   How old is your original 'onc'?  Would they be 'up to date' with the latest treatments/findings? 

    You may not be the only one that she has mucked up with treatment.

    FFS - the blood markers are a flag ..... and should have been acted upon immediately - that's why you are having them. grr

    As @primek says, maybe approach them on compassionate grounds re your new drug?  And as @Zoffiel mentioned - contacting the Oncology Society as well.  

    All the best - big hugs coming your way  xxxx
  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    How maddening ! She deserves whatever sanctions you can load onto her. It's probably worth having a chat to the BCNA team about how you can start some sort of effective complaints process--they might (or might not) have some advice. I think a letter to the Clinical Oncology Society of Australia would be in order at the very least. Unfortunately--from my personal experience--they tend to close ranks quickly to protect their own, but you have very legitimate grounds to demand some sort of action--the liver spot is a concrete 'thing' that can not be ignored and should not have been missed.

    Good luck with the new drugs. The cost is crippling but I guess you've got to do whatever you can. With any luck your new team can find a way to ether get you onto some sort of trial or advocate for subsidised access. MXX


  • primek's avatar
    primek
    Member
    6 years ago
    Wow how infuriating and how expensive are these drugs! Any chance you can access in compassionate grounds. 
  • lrb_03's avatar
    lrb_03
    Member
    6 years ago
    I'm so sorry to hear this happened to you. There can be no explanation, though I know some say tumour markers aren't always reliable with breast cancer.
    Glad you listened to your gut and got another opinion, and hope that you have a good, long run of stability, at worst, on your new treatment
    I, too would be livid over this.
    Sending hugs