Oncology 1st Appointment

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Hi all, just wondering if anybody has any tips for the first appointment with the Oncologist please? 

My Dad has just been diagnosed with an agressive advanced head and neck tumour on the side of his neck just below ear. They haven't staged it. It is localised. It has ulcerated. It's quite large like the size of the palm of your hand.

Really worried as not sure if the treatment plan which is chemo followed by radiation is worth the suffering or not? But is not trying even really an option... There are so many unknowns but can't bear the thought of Dad suffering anymore than he has (he's had sepsis and in lots of pain and in and out of hospital due to the cancer infection from the ulcerative tumour) for a few more months of life.

It's so, so difficult and ultimately my Dad's decision. I just wanted to get some thoughts or experiences from others please.

Dad's consultant said he could get months or a year or so of life with the treatment and it's not unheard of that people live for 5 years. 

Very upsetting times but trying to be positive and get knowledgeable to help my Dad the best I can. Doing lots of lovely things together when he feels well. 

Any hints and tips about anything at all that could help will be great. 

Thanks Blush

  • Hi Cat. I’ve answered a similar post of yours in another thread but I hope others join in here. 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Good evening Cat, this is so hard to answer, maybe its worth having a good chat with your dad's consultant about his quality of life during and after the treatment. I personally would most probably give anything a try if there was a glimmer of hope,  you can always stop the treatment if he does not feel comfortable, we all react differently to the treatments and recovery varies from person to person also age can have a factor in the recovery period but on the whole most people do get through the treatment. As i mentioned maybe a chat with family and his medical team will help sort out any issues or concerns. There is no right or wrong choice its just a case of choosing which is best , i wish you all the very best , take care. 

                                                                                    Chris x

    Its sometimes not easy but its worth it ! 

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  • It’s a worrying time and you’ll likely forget to ask some of what you planned to, and also some of what you’re told by your team, so my very simple tip would be to take a pen and notebook, write down the questions you want to ask beforehand and write down what they tell you during the meeting. I bought an A4 notebook at the outset and still use it for my meetings nearly 3 years on. I hope it goes well for you. 

  • Hi Chris, thank you for your thoughts on this... I have had a good think about you've said and feel differently now in a positive way. I will ask the questions. I hope you have a lovely day x

  • Hi MarKel, thank you for your wonderful advice and I'll make sure I do this. Have a lovely day x

  • Hi Beesuit, 

    Following the 1st Oncology meeting, we were informed that the Chemo drugs are....

    Day 1 Cisplatin & 5FU
    Day 2 Docetaxel

    Dad will be an inpatient. He is having the full chemo dose as they say he is healthy enough....They were sitting on the fence with this but decided on higher dose. They aim to do 3 cycles, each cycle lasting 3 weeks.

    Anu2 thoughts or advice prior to chemo starting would be great. Thanks everyone x

  • Hi Cat. Thanks for the update

    Your dad will be well looked after. It’s good that he’s an inpatient as these chemo drugs are pretty ghastly. Hospital would be the best place where he can have the best care. 
    Just be there for him. Make sure he has a phone with a long charging lead, a tablet and maybe some audible books, something light and refreshing to drink and some lip salve to keep his lips moist. 
    im sure others will come up with more useful things. 

    Give him a hug from me and The Community xx

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Thank you Beesuit. Some lovely advice there x

  • This i lovely to hear Cat that he is healthy enough and will be an in-patient as it will benefit everyone, just make sure he has his basic needs and things that will keep him occupied, i used to enjoy crosswords, and listening to music through headphones as they are easier to keep on rather than earpieces. Maybe a small tablet and a phone so he can stay in touch plus maybe reading the daily newspaper. Starting with a higher dose is better as they can always reduce it if it causes any problems. Also, tell him to grab as much sleep as he can as it can be noisy at night time with the snoring choir coming into force Slight smile. Wishing you all well, take care.

                                                                     Chris x

    Its sometimes not easy but its worth it ! 

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