Hi guys I need advice

I know I posted that he was cured a couple of days ago, we were told he was and that it was gone, he went in for a check up on his scar today and they told him that they pulled out some still active tumours that they didnt know was there/ the biopsys didn't pick up, they've told him that he can't have anymore treatment or operations but have a suggested a tablet treatment and I just need to know what this tablet treatment is, although I think deep down now they are life prolonging aren't they? Not a cure treatment.

I've done my screaming and crying I've gone through the utter shock of suddenly having good news ripped straight out of my grasp, I didn't even think it was possible to feel so much pain and sadness at one point, I was told he was cured, I was told he'll be at my graduation, I was told he'll see he'll see his grandchildren that he'll walk me down the isle and if I'm correct I've just been told this is going to kill him right? I feel shocked utterly betrayed, like my nightmares have just manifested themselves.

I don't know if anyone can relate to this? I hope so I just need to know the facts that aren't sugar coated, and whether this tablet treatment is a cure or a prolonging thing, im not sure how I should be thinking and feeling, I'm feeling pretty numb at the moment like the world is doing everything it can to knock us down, we had at least 2 weeks of relief though thinking that we had done this and that everything was okay, and I'm grateful for that time we were given, of anyone has any advice I'd be most grateful to hear it, thankyou everyone. Xx 

  • Oh dear Acornette How in earth can they get it wrong. I do know it’s  it possible to have radiotherapy in same place twice but as for tablet sorry I can’t help yiu their. Just wanted to,post something. do you have a Macmillann or CNS nurse think as a family you need some explanation s. Plus someone to talk you through what they mean, So so sorry for all of you. Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.

  • Oh Acornette this is such unwelcome and worrying news. You can't be left in limbo like this without an explanation of what they mean. Can you get in touch with your dad's consultant's secretary and schedule an urgent appointment so that you can all sit down to listen to an explanation? I don't know of an oral chemotherapy for HNSCC. I hope you get some sort of answer as you shouldn't be left dangling coming to conclusions yourself. They must at least have arranged some sort of follow up. You could go with your dad. Wishing you all the luck in the world

    Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
    The blog is my personal cancer journey, warts and all. 

  • Oh god i am so sorry to hear this. How did they 'miss' tumours?

    I think with radio, they have a limit to how much they will blast an area (although if its the only cure option i am not sure why they stick to it)

    As for the tablets i have no idea if its an oral chemotherapy, or an oral immunotherapy, they should definitely be telling you all of this!

    I would definitely call and say you need an explanation.

  • This is so unpleasant to read Acornette, how can they miss these tumours and find them so suddenly, i think they owe you and your dad a big explanation. Please do not take no for an answer until they tell you their reasoning behind their decision. As Beesuit said you need to have a meeting with the consultant and his team, I know these things can happen but not so early after a procedure. I honestly have not heard of a tablet treatment, I wish I did so I could give you some advice. Hang on in there and see what they say as something does not ring true. I wish i could give you a hug, we have all got to know you on this forum so we will offer as much support and advice we can , please take care and try and keep strong, both of you. 

                                                                               Chris xx

    Its sometimes not easy but its worth it !                Click here to find out more

  • Acornette, Please do what the others have said and try to get an appointment with his consultant, so he can explain the whole thing to you.

    Hopefully he may be able to clear things up with a full explanation, of what the treatment is. So sorry to hear you are in this position.

    Regards Ray.

  • Oh 

    This is truly awful news!

    Great advice from everyone on here as usual.

    Your dad will have a H&N cancer nurse. Give her a call this morning.

    I have a friend who takes a daily chemo tablet but that’s for blood cancer.

    Will be thinking of you.


    Sharon xx

    Sharon xx

    Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20

    Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20 

  • I can only echo what the others have said- try to get a meeting or, at the very least, a telephone conversation with the Consultant.  Let us know x 

  • Dad will have a CAT scan in about a month when he's healed from his op, they were unaware that there were any active tumours left so they did the operation under the assumption that all the cancerous tissue was dead, after they had done the operation they then informed us that they had found cancerous tissue in the operated material, they told him this at his check up for his operation scar and how it was healing, they then told him he can have no more further treatment apart from some form of tablet treatment, I appreciate all the advice given here and I'll let you all know what's happening when I have any further information, thankyou all so much for the support this is the only place I feel like people could understand how I'm feeling xx

  • Acornette I'm so so sorry to hear this, u all must be absolutely devastated with this news, but as all the others have said, demand answers, u have every right to demand answers and to explore every possible solution available. Sorry i can't help with any tablet info but I'm sending u all hugs and well wishes across the water Heartpulse