Grumpy and frustrated

FormerMember
FormerMember
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After radiotherapy (palliative) last year when I was looked after by a truly wonderful oncologist I am now back with the ENT department under a surgical consultant.

He is truly unapproachable and we'll miserable.  He told me my tumour would not respond to chemotherapy or radiotherapy and that surgery would be "mutilation".

The tumour did respond and shrank but I don't know how much as they (he) won't give me a PET scan as there is nothing more they can do for me.  When my vocal cord became paralyzed he matter of factly told me that the cancer had possibly spread to my lung and asked why I wanted a scan as there is nothing more they can do for me. After keeping me in the dark about the results for about 4 weeks and over Christmas I finally got an answer from the cancer nurses, it had not spread but the CT scan doesn't show the difference between cancerous cells and necrosis so I still don't know about the tumour.  Saw another doctor, think I was being punished for daring the chase up my results ( no punishment for me only relief at not having to see him) who said the nerve to the vocal cord was probably damaged during healing.

Last appointment was over the phone with himself, I mentioned a new earache and asked if this could also be nerve damage, he said no it would be caused by the cancer and asked if I was losing weight, didn't seem to believe me when I said I wasn't.

Next appointment is Wednesday again phone, I just don't want to talk to him as he makes me feel like just giving up. Until I injured my calf the other week I had been running 20 miles a week.

My GP was up for getting me a second opinion but then was happy I had the CT scan even though it doesn't give the true picture about the tumour. 

Sorry for moaning

  • Hi

    I am so sorry to hear this. Especially with your outlook I don't think you have anything to loose from asking for a second opinion and I would get it in motion as soon as possible. For peace of mind you need to be certain that everything has been done for you so you can come to terms with the expected outcome, or at least I would want to know this in your place. Do some research online and/or chat to your GP again or perhaps others have some better ideas?  As a last resort could you afford to go to an oncologist privately for a session to go through your scans and update you? When I was struggling to get info I discovered that private appointments are usually around £200-300  which would be cheap if it gives you additional information on your condition.

    If he is not offering you surgery why are you under him anyway?

    A life lived in fear, is a life half lived.
    Nicky
  • I would go for a second opinion, and are you able to see another consultant? You deserve help and support.

    Xx

    Flowerlady x
  • FormerMember
    FormerMember in reply to Nicky Nosher

    Thanks Nicky

    I have looked into getting a PET scan done privately but didn't think about a private appointment, I will get onto it straight away.

    You are quite right, I do not want any doubts at the end as to whether I could have done more.

    Tracy x

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Cancermum,like said here before me would definitely go for 2nd opinion or be transferred to another hospital or go private.It took me nearly a year from diagnosis finally to have an oncologist whobis caring and knows what she is doing and saying.Before I had 3 different "wonderful" oncologist they couldnt tell me if the primary cancer was in breast or in lungs took them 2 months to decide.And I know the sentence "cant do anything more for you" too.Some of the doctors shouldnt be even practising medicine with this attitude.

    I wish you all the best I hope you get some answers and proper care.

    Janet

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you Janet x

  • Hi (Tracy) Well no wonder you feel grumpy and frustrated (or is that your oncologist!!) Anyone would in your situation. I had to see a Consultant Opthalmologist near the start of my cancer journey. Of course I was worried the Malignant Melanoma had spread to my eyes as I got up one morning and everything was fuzzy! He told me I had a vivid imagination and all I had was inflammation. Long story short....... I got a second opinion and he ordered a scan, it was MM. I wrote a letter of complaint about the way I was spoken to and about his attitude in general and said I didn't want him to treat me again. Now it turned out he was the Senior Consultant in that hospital, so I moved to another hospital!

    Please don't let these "I am the Consultant, you know nothing" type of people upset you! Get a second opinion, preferably at another hospital or as Norberry says, go private! I would gladly have paid for a scan if the second consultant hadn't ordered it, that was my plan!

    It's a terrible thing to have to say but some of these a***s think they are God Almighty, it's your life, be assertive and fight your corner until you get the answers you are after. They may not be the answers you want but at least you will know! Good luck! Let us know how you get on please!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember

    Hi

    I don’t have anything to add except my sympathy. It’s very hard to understand why you’d be back under a surgeon. I haven’t seen one of them since 2014 when I had my op. I’m really sorry you’ve been treated like this and don’t worry about moaning. It’s what we’re here for 

    xxx

  • FormerMember
    FormerMember

    Morning  

    It's no wonder you're feeling grumpy and frustrated, anyone would be in these circumstances. You have every reason to moan.

    I would definitely start by asking for a second opinion and ask to be copied in to every letter from your Oncologist to your GP. There is no point in being under a Consultant who not only has nothing to offer but is difficult to talk to and demoralising.

    When I was in hospital last year I saw a Consultant who painted such a bleak picture and took away every shred of hope for any improvement or any further treatment, it was a very difficult time.

    My own Consultant was not ready to give up and we re-grouped and started another plan. It hasn't been plain sailing and he doesn't pull any punches but he radiates positivity and it makes such a difference. 

    I hope you'll find someone who inspires confidence and gives you the support and respect you deserve.

    xx 

  • FormerMember
    FormerMember

    Hello Cancer Mum,

     Do get a second opinion and not from a ENT friend of his down the hall.  Run don't walk, he seems abusive.

    Sounds like he is not the right doctor for you (I have now changed 3 doctors over 6 years )  and it was the right thing to do. I now have a fantastic oncologist and I am in my 6th year of what would have been a 2-3  year survival cancer.

    Listen to your GP-and get a new doctor.  Is there any way you can return to your wonderful oncologist? 

    Please Go ahead and Moan loudly until you find a physician that is on your side and will fight for you.

    Warm Regards,

    Millie

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Millie

    My "appointment" was on Wednesday, patiently waited by the phone all day but no call. Followed up the next day and HE had left a note to say no reply and a message left, I confirmed to the hospital that they do have my correct telephone number and that I had no missed calls that day nor were there any messages left.

    Thinking of writing down everything and sending that to my GP as obviously no face to face appointments and also maybe sending it as a complaint to the hospital.

    Your comments are much appreciated Heart