Confused & frustrated post-consult - GCT rare form of OC

Hi Folks,I have Granulosa Cell Tumour, first found in 2017, a rare form of ovarian cancer that is usually slow  growing & doesn't recur for years. Sadly, mine seems not to have received the memo, as it came back within the year, and just a couple of months further on, seems to have decided to stay. I've  just had 2nd consult with a London specialist, but feel he was really distracted this time. He mentioned different drugs initially, then dismissed that idea (I think he forgot he put me on hormone blockers last month) and needed both us and the nurse to prompt him that there were various lab tests outstanding  from last time. He then took a call in the middle about another patient, and talked in medical jargon. He also said these drugs don't work on everyone, &that those they don't work on die - twice! (I think we got the message the first time.)

We had travelled a long way for this consultation, and psyched ourselves up for it, but have ended up feeling very confused, frustrated that we didnt make more of a stand (though I did press him that the results MUST be back now and that last time he didn't have my notes st all) and not sure that we have someone who gives a damn. I do get that these guys are busy and under pressure. I also have a caseload in my role and am guilty of not always being on top of the info on the individual I have in front of me, but I will then try to recap to be sure I know where I'm at. He just seemed to bluster and I felt he was then irritated by me questioning him, even tentatively. I'm a confident, intelligent woman, but felt unable to press him for more info and ended up just wanting to get out of there as soon as possible without clear information. This is my life we're talking about! 

Any advice on where to go from here? They will discuss me and my scans in full shortly and I have emailed some questions to the oncology nurse who was lovely, and even apologised for how he was, saying she could feel the tense atmosphere. How do we deal with these intelligent people who seem devoid of people skills, but have our lives in their hands? 

  • Wow.  Is this an NHS doctor or a private one?  I know we can all have bad days and can make allowance for someone perhaps being in shock for instance after receiving bad news but this seems to be becoming a habit with this doctor as you say he had for whatever reason not brought your notes to the previous meeting.  I am guessing that you don't have a large choice of doctors as you have told us that your rare form of ovarian cancer was only discovered in 2017 and perhaps there are not so many doctors at this level who are specialising in this area.    If you do have any other choice I would imagine you would be taking it.  By whom were you referred to this doctor - ?your GP - whoever it is can you speak to them to identify any other possible options who are competent to treat you?  This is serious stuff.   

    I may have misunderstood the realities of your situation and if so my apologies.  You have enough stress with your illness without having to cope with this also.  Annie