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pilar tumour

ballerinajade
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Is there anyone out there who has a malignant pilar tumour of the scalp, or knows someone that has. Noone at my hospital seems to know anything, and I have to show them the scarce bits I have found on the internet myself. My  consultant said I would have lots of follow ups, but not with him. I've had 2 follow ups, both by very young women doctors, who were probably perfectly able to do follow ups, but couldn't answer a single question about the tumour or what was found when it was removed. Neither of them would comment at all about my prognosis (unknown whether or not | would make the 5years survival) - which is obviously a dark cloud hanging over my head and creeping into my nightmares.

 

thank you, if anyone has read this! My friends and family are bored with my head now (it's been 6 months since it all started - leaving me a maximum of 4 years left?) so I keep quiet and carry on. Luckily I mostly feel physically fantastically well and have more energy now than I ever had when I was young. I go to 6 ballet classes a week xxx

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    Hi ballerinajade

    Sorry to hear you have had a bad experience with your medical team but it's great that you feel good and are attending ballet classes six days a week!

    It might be worth contacting our nurses, they may be able to find some information about your tumour. You can contact them on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

    Best wishes

    Jane

     

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    My Dad has just been diagnosed with this today and I can't praise his consultant enough -  so sorry to hear that you've had such a terrible experience. I am the same as you in that I can't find any information about this type of tumour and its progress. The Consultant did say that it was slow growing and rarely spread despite being malignant. My Dad is 90 though so we are going to review things in 3months because he is not well enough to have surgery. I hope things go OK for you 

     

     

  • Offline in reply to Moderator Jane

    sorry, only just found out how to get back on this forum! thanks for reply. took the plunge, and encouraged by PALS, I made a complaint against consultant. (but I did apologise to him for doing so, as he has ben exceptionally kind and helpful since, and I withdrew the complaint)

    But what a world of difference, he now says I don't have cancer and am not going to die, and denies ever referring to the 5 year survival rate!  (because in 9 years he says he never has referred to it to any of his patients). we even laughed a few times. Also I now have a lovely skin consultant at a different hospital, plus an even nicer oncology consultant, who told me last week, that I wasn't going to die, was very healthy (couldn't believe my date of birth) and said I didn't need any treatment - yay. And he will look for someone in USA who has knowledge of pilar tumours.

    Also, the first consultant is going to have a better look at what the path lab came up with, and give me the findings (about time after 8 months, but better late than never)

    Moral - make a complaint, and you get a much nicer prognosis!!!! plus 3 consultants running after you, being KIND. I feel so much better.

  • Offline in reply to susiepoos

    SORRY FOR LONG DELAY!

    having now seen 2 different consultants, who were lovely, plus having my original one apologising (in his own way) I now have a much better understanding of the tumour. I am told it is not a fast spreading cancer, (in fact, it is the best kind of cancer to have!) and although I did have mine removed surgically while awake, I now doubt if your father needs to worry too much. I originally had to have it removed because it was growing so big that I couldn't lie down comfortably, and at that time noone guessed it was cancer.

    So, is your dad's lump actually growing? mine went from 2 cms for 30 years, to about 7 cms in just a few weeks. (but only a tiny bit was tumour, the rest was fluid)

    I have had 3 follow ups so far, all of which have shown no sign of return or spead. I have been told I will not die from this! and I need no other treatment, just the surgery, no chemo or radiation.

    I wish there was a support group, but I can't find one. best info on internet is Medscape.

    If you want to ask me anything else, please feel free, I would be happy to help.

    please post info about how your father gets on after the 3 month check! good luck to him xx

     

     

    having it removed while awake was fine and painless. equivalent to going to the dentist, without the stretched mouth!. it took about 45 minutes including a skin graft from my neck - the only bit that was slightly uncomfortable, but only because of pressur being put on the neck. I wish it had been taken from somewhere else!

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