Annoyed after first appointment

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First appointment with the haematologist, I went in feeling relaxed and unconcerned, fully expecting her to say, “watch and wait,” and armed with a relatively short list of questions so that I know where I stand.

Results:

She had no idea what stage I am at. She had no idea what type of lymphoma I have (said it could be atypical follicular b-cell, or it could be MALT.) She had no idea if my lymphoma was found inside a lymph node or in the surrounding lung tissue.

AND she kept trying to avoid answering my questions, challenging me instead with, “why do you want to know?” and, “Why is this important?”

I basically hit the roof. Not in the room, I managed to get out of there without causing issues, but today I called Macmillan who then called the haematology CNS who then called me (twice, because the first time she had no idea what was really going on and had no answers,) and made myself clear in no uncertain terms, amongst other things telling them that if this doctor was unwilling or unable to hold a conversation with me without challenging and avoiding, then please move me to another consultant. I got an answer to one of my questions and was told that three other questions would have to wait until after they discuss my case in the MDT. Two other questions were beyond the nurse's education, but I figure they can now wait until I speak to a consultant again.

On the positive side, it is for now watch and wait, and since I have other health issues to worry about (recovering from a mastectomy at the moment and still have the joy of more chemo ahead of me, possibly radiotherapy as well depending on pathology results) I am not all that concerned about my lymphoma, but I am pissed off beyond polite description about how it all went with haematology.

  • Hi , sorry to hear your first Heamatology appointment was not great. Let’s look for you to get some clear answers soon.

    My first appointment with my Haematologist back on in late 2013 was also interesting, He was rather obnoxious and was talking down at me……. So I did have it out with him on the spot. My Macmillan Specialist Cancer Nurse (SCN) was also in the room, sitting behind the consultant so when I insisted on a clear communication standpoint she was giving me lots visual positive encouragement. From that point on I had no problems, the ground rules had been set on my terms and the treatment ai received was excellent. 

    The SCN became a great family friend and ai have worked on a few Macmillan projects with her over the years. She always say that I had been the first person to go toe to toe with the consultant and me standing up to him had been a positive move in how he handles other people.

    Getting good clear information should not hard especially during such a challenge time in your life.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike and thanks for responding to me again. One concern I now have is about the completeness of my medical files, because either they are incomplete, or that haematologist came into the appointment completely unprepared. She said something else that I found stupid -- that if she cannot find out in the records where the lymphoma was, she would talk to the surgeon who took it out. Now, that surgeon took out three wedges that day. I wonder how on earth is she expecting him to know which one contained the cancer, or even remember the minute details of a surgery that took place more than two months ago. My next appointment is in December, and this time I am leaving "nice" outside. They have been pre-warned that I will not tolerate any more of this, so I hope this time she comes in both well-prepared and with a changed attitude.

    Last time we spoke you pointed me to some websites. Any idea if the people who man their helpline phones have the education to be able to answer uncommon general questions? I would like to try and find out at least these answers before December if I can.

  • Oh, not a good update..... a rather frustrating update. Lets hope that the Haematologist was having an off day Rolling eyes

    Yes, the surgeon will have no idea what the "wedges" are. Blood cancers like Lymphoma is nothing like solid tumour cancers and only once the biopsy material is looked at in the lab can a clear diagnosis be made.

    I actually also volunteer with Lymphoma Action and our helpline is open every week day from 10 til 3 on 0808 808 5555. Sharon or Nic who run the helpline are great. Will they be able to answer your uncommon questions?..... I don't know but until you ask who knows. They have access to lots of resources so I suggest you call them on Monday

    Active Monitoring (Watch and Wait) for FL is often the way forward. I was helping on a zoom support group through Lymphoma Action a week back and about half the people on the call - 10 people had FL only 2 had had treatment and the others have been on Active Monitoring for years.

    Yes time to get your point elbows ready for your next appointment ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi GreyCats, this may sound stupid but are you confident they were look at your file/records, some years back I saw a neurologist because I have a spinal stenosis and half way through the consultation it became clear he was talking about a different patient and the appointment ended up being bizarre and a waste of time. I resolved it through my GP, so just wondering could you speak to your GP to find out what is on your file and explain how the consultation went, a good GP should be able to help you hopefully. 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi johnr. Yeah, I know what you mean. I have an iron fist around that side of things, so I made sure her screen showed my information and my correct hospital number and name.

    Thanks for pointing this out though, this kind of thing seems to happen too often. 

  • I always ask for copies of the reports. So the biopsy report would explain everything. They are obliged to give it to you if you ask.

  • Excellent idea, thanks!