Not sure what it all means

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Oral cancer right cheek. Stage 2. Had option of RT or surgery and chose RT. Finished at end of Feb.

Had PET 2 weeks ago, today was Results Day. Except it wasn't. Registrar (never seen before) said there was "some uncertainty" about one area of cheek, not completely clear. I am referred back to the Top Dog for a further biopsy and MRI. Registrar would not commit to what was meant by "not completely clear" or what Top Dog might suggest, but she did not rule out surgery. She told me not to think ahead but wait and see. I didn't find that at all reassuring.

My brain is whirring like crazy. Got home 3 hours ago and still shaking with fear.

I don't expect any of you to tell me it will all be okay cos you don't know, but I am now petrified.

  • Hi  

    I wish registrars weren’t left with this sort of news because they always get their knickers in a twist and being junior all they can give you is a list of what might happen next, whereas a consultant would know! 
    A very similar thing happened to me 

    I had an avid 16week PET. It means that an area where my cancer had been showed up “hot” and needed investigating. The usual reason is that healing hasn’t progressed as far as anticipated so there is still inflammation there from the radiotherapy OR, of course, that there is still cancer there. The former is hugely more common than the latter. It’s one reason why many oncologists would prefer that post treatment PETs are left much later than they usually are. 
    My oncologist suggested a biopsy to see what was going on ( some centres re scan three months later) 

    Happily my biopsy was clear and the cancer had gone. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Mad Meg. Am so sorry that the registrar had to be the one who has to give you the results and they  didn’t help you in the slightest. I do hope that too dog gets back to you as soon as possible . Do you have a cns or Macmillian nurse if so I would contact them to chase your next appointment up and  strongly advise them that you aren’t prepared to wait. Dani’s covered the events that happened to her remember it could quite well be a hot spot  I wasn’t scanned until week 18  my oncologist prefers to wait.
    In the meantime it’s back to the wait and see try to keep busy and try not to dwell on the what maybes easy to say hard to do. 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hey x I was just saying (on another thread) that I have had 4 scans in the last 6 months. Finished treatment 1 Sep and started have treatment scans in November. Each time they said results were looking good but 'some uncertainty'. They could see something though didn't class it as avid. And each time they said it was improving but still needed another scan for review. Along the way, another surgery was mentioned as a possible next step. But I refused to over think or worry about opting to not concern myself until I had a definitive answer. Instead, I decided to live like all was well until someone told me otherwise rather than dwell on what might come. To be honest, it's a strategy I've trained myself to apply to all aspects of my life. Not always easy but it does keep anxiety at bay.  And, finally - today they said they were happy. No evidence of cancer and no need for further imaging. So just my regular reviews. 

  • I don't know if my review appointments are unique but every time there has been a junior doctor that has carried out the examination but the consultant has always been  present to offer guidance.   I  know everyone needs to learn but surely a more senior doctor or nurse should be there to offer assurance as these type of review appointments (can you contact your CNS for their comments).   Hopefully as Dani has said that things still need to settle.  Best wishes.  

  • Similar experiences for me.

    Whenever I've seen a registrar or CNS and they've been unsure of something, a consultant was always on hand to call in for guidance...it's happened several times.

    I think, in your position, I may have asked to see someone more senior....but having the presence of mind to do that in such a highly emotion charged moment is another thing entirely!

    No fun to be left in limbo, your brain will understandably be in overdrive, but the most likely cause of this is scar tissue from the RT...happened to me as well. Try to stay positive Meg....easier said than done I know.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi all

    Three things. One, my PET was only 12 weeks after the end of RT, so I see what you are all saying re it being too soon.

    Two, I'm sure I posted a "thank you" message on here but I can't see or find it - am I supposed to?

    Three, I am normally a very positive person but suddenly that trait has failed me completely. I'm involved in politics (locally - and have been for 50+ years)  and as you all know a GE is imminent. Never mind which party I support, but our candidate is predicted to take the seat from the incumbent Tory, so the pressure is on. Yesterday hubby and I went to deliver election literature and for the first time in my life we had to abandon it and take the undelivered leaflets back to HQ. I simply couldn't be bothered to make the effort. Sadly, the same has applied to our planned 30-mile trip to see our 9-year-old grand-daughter in her end of term dancing class. Next weekend the whole family (including daughter who lives 200 miles away) are coming to celebrate Fathers' Day and the entire house is a tip - but I can't face doing anything about it. It simply isn't "me". I know you've all felt like that during your cancer journeys and it's clear that you have coped, so I wait for this cloud to disappear. As Margaret Thatcher said "There Is No Alternative" (I forget what she was referring to).

    Thanks again to you all. I will probably feel better once I have a date for the biopsy and a discussion with someone who knows what they are on about. I have been lulled into a false sense of hope by that "stupid" TV advert of the woman who emerges from the consulting room saying "It's gone!". I'm just not used to not coping with emotions.

    Thanks for listening.

    Meg

  • Two, I'm sure I posted a "thank you" message on here but I can't see or find it - am I supposed to?

    No. Absolutely noT necessary. The easiest thing is to simply like a reply. So don’t worry. 
    I know how hard it is to put the cancer on hold for other events including a normal life. Just do what you can 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Meg

    You lack of enthusiasm is one of the symptoms of cancer fatigue.  My Trust put on a seminar about it this week.  It was really interesting.  The ways it manifests itself and the effect on you are wide and often quite severe.

    They did give a range of coping strategies which boil down to prioritising things that are a) enjoyable to you and b) are important must dos.  Also don't be afraid to ask for help with daily chores and simplify things as much as you can.  One example was rather than fresh veg use pre-prepared frozen.  Don't let your battery run completely dry.  Recharge little and often.  Finally keep a diary so you can see the trends of getting better and also when you are at your best and flag during the day so you know when you can do something and when you need to recharge.

    Peter
    See my profile for more details of my convoluted journey
  • Meg remember the family are coming to see you and their dad. So  what if house is a top it doesn’t matter. I can’t even remember cleaning up for a giid year I pottered. You could delegate a duster ti the first through the door or the Hoover. Hugs   Plus re yiyr grand daughter thrrr will be other occasions. As for the GE  think it’s almost a fore gone conclusion sm sure sone leaflets not getting delivered it’s t the end of the world. Look after yourself hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi again all

    And more thanks for your supportive words. I'm afraid the house is in a bigger tip than will be solved by a duster but I understand what you are all saying. Sadly hubby isn't either interested or any good at housework - I have to battle to get him do the few jobs that are "his". Still, his mother did warn me 53 years ago! Nor is he any use at cooking. I made 42 2-portion meals for the freezer back in December, but they've all gone so it's been convenience foods since then. No use if I were on a diet (which I usually am)!

    Pretty confident the Tories are going out but very oddly the constituency I'm helping has little support for Labour and never has, despite including huge areas of 1960s council tower-blocks and abject poverty - so you  can guess which party I am fighting for and it's not one of the "new ones". In my own constituency it's between Tory and Labour - our last MP was around 1910, so no chance for "us".

    I can't see a button saying "LIKE".

    Hopefully I'll improve in the coming days. Don't know what I'd do without you all.

    Meg