New to the group & struggling emotionally with diagnosis and expected treatment

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Hi everyone - my name is Karen and I was diagnosed with throat cancer a couple of months ago. I had surgery 3 weeks ago where they removed my left tonsil, and part of my throat and surrounding muscle. The surgery was hard and the pain was awful but I got through it. What has broken me is that I went to see the oncologist today and they haven’t been able to remove it all so I need radio and chemo - I knew it was highly likely - I think they said there was an 80% chance I would need it, but I just can’t stop crying and feeling so down about it. I am usually such a strong person and I’m always the one holding everyone else up and it’s just not like me at all. I have to see the dentist at the hospital tomorrow as they think they need 3 x teeth removing as well before they start radiotherapy - I’m just fed up with not all. I know there is no real alternative but it has really hit me hard. 

  • Hi Kazzy, I hope you're ok. I know it's 2am but I can't sleep. You are doing a grand job with everything that you have gone through. I know it's easy for me to say but keep as strong as possible. You can do this. I know radiotherapy isn't great but will prolong your life..  any extra chance at life is good right!? X hugs to you. Positive thinking Heart

  • Hi Kazzy

    Welcome to the group and sorry to hear about the cancer. You have just been through a tough time with your op and naturally hoped to put it all behind you and move on. Needing the radio and chemo is a bit of a blow and does prolong the journey somewhat unfortunately. It takes time to come to terms with the fact that your life has taken a bend in the road that you did not predict. One moment we are cruising along enjoying our life and then bam suddenly everything is different. It does take it's toll emotionally. However take heart. There are so many people on the forum who have had to travel the same path so will be able to give you advice from their lived experience. This is a deviation from the life you would prefer but given time things will improve and eventually you will look back on it in the rear view mirror, you just have to get there. Take it a day at a time and don't be afraid of those emotions.  I suffered from them as well and it is now 2 years since my last cancer op although not the same as yours but I am powering on and enjoying my life. There is a good cure rate for head and neck cancers but the treatment can be rather brutal.

    Sending you positive thoughts. You can do this.

    Lyn

    Sophie66

  • Hi Karen. Sorry to see you here but stick with us. There are lots of people here who have waked the same path, have survived and thrived. I am five years clear of this and living a good life.

    There is no sugar coating this. The treatment is hard but hold onto the fact that cure rates are in excess of 95% if your cancer is HPV driven. 

    All the side effects can be mitigated. The treatment doesn't last forever. It's a few weeks out of your life and a year to recover properly. 

    I was just talking with a friend about this. The hardest part is to trust your body and soul; to hang onto your sanity; to be patient and know you will get better. Trust your medical team. They do this every day and are good at it. 

    You will get there, through the pain the tears and the odd meltdown there is a great life at the end.

    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 Kazzy

    I had 30 Radio and 4 Chemo for tonsil cancer and it is a tough gig...3 molars out ....PEG feeding tube inserted....you have a hard journey ahead but HPV16+ cancers have a very high cure rate.

    I finished treatment in June 2023 and by October I was improving rapidly, went to Canaries with my wife, swimming and playing golf now.....things are still improving....there is light at the end of the tunnel.

    Take care

    Peter

  • Hi Karen. Sorry you found yourself on here were a small and friendly bunch and now we will  help where we can

     I’m six years post treatment for tonsil cancer with  7  lymph nodes. I have 35 radiotherapy sessions two of a planned three chemo like Dani says we  can’t lie  the treatment is hard it’s brutal . I was 61 when diagnosed. I’m sat here at the moment in the south of Spain just getting ready to ride my bike. There’s a great life to be  had after treatment. happy an especially if your tumour is HPV driven, any questions? Just pop on an ask. 
    Hugs Hazel 

    blog below might help. 

    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 Karen

    It is a tough journey.  I had my tonsils removed as well as all the lymph nodes on the right.  Surgical recovery was manageable.  I then went on to have radiotherapy and chemotherapy a few years later.  Just recovering from that episode.

    I describe the treatment as brutal and the recovery torture.  Having said that, I am just shy of 6 months since starting treatment and doing really well.  My brain has forgotten the bad bits of the treatment, but remembers the good bits - the fantastic staff that went above and beyond to make my journey the most comfortable possible.

    I was lucky and kept all my teeth.

    Take control now.

    Make sure you plan the elements of your care that you have control over; transport, foods, lotions and potions for skin care, sleeping arrangements etc. 

    Talk to your GP.  You may not need their support right now, but keeping them aligned with your journey will make it easier for them to step in when you do need them.  I found mine extremely grateful for my updates as the hospital remained silent during and after treatment.

    Seriously think about having a PEG inserted (and learn how to use it) so that when you inevitably stop being able to swallow that does not become a crisis.  Instead meds, hydration and food are comfortably pumped into you and you don't suffer whilst waiting for an NG tube to be fitted with all the hassle of managing it.

    I found that being public with my story was cathartic for me and recently friends have told me they valued my updates on FB.  Others keep a diary and others choose to close up.  There is no right or wrong it is what works for you.

    Please remember that no matter how hard you have it you are at least partially in control of this journey.  Partners and family have no control and just try to support you as best as they think they can.  I personally believe their journey is at least as difficult as ours.

    If you have access to a Maggie's centre I would strongly advise connecting with them.  They provide fantastic support.  Different to Macmillan, but just wonderful when you (or your family) need an emotional pick-me-up.

    There is a wealth of experience on here to help you.  Stick with us.

    Peter
    See my profile for more details of my convoluted journey
  • Good evening Kazzystar, well done in getting through the operation as i know how difficult and worrying it can be, i was like you after my first operation where they were not sure they had removed all the tumour , my consultant said to me that if you imagine pulling up a plant there is a likelihood that some of the roots will be left behind so the radiotherapy is done to improve the chances of getting rid of any stray cells. I know the thought of losing some teeth is annoying but for radiotherapy to be successful they have to remove anything that is in the way of the targeted area so hopefully they will try and keep as many as possible, also if they are not removed it can cause further issues later down the line. Try not to be to disheartened as it will all be worth it in the end despite the side effects that might some discomfort, we are all different in the way we react to radiotherapy and hopefully, like me, you will not suffer that badly. Mine was done in 2008 and procedures along with the cure rate have improved with better-targeted radiotherapy keeping discomfort to a minimum. Stay strong and take each day as it comes, take care.

                                                                               Chris x

    Its sometimes not easy but its worth it ! 

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  • Hi jazzy well lease don’t be scared things will turn out fine, it’s a long haul I’m 14 months on from my squamous cell carcinoma in my left jaw, jaw taken and replaced by my right fibula, I had six Heartseeks radiotherapy, luckily no chemo but yes it’s a lng haul but soon goes and everything goes towards prolonging your life, I’m still waiting for reconstructive dentistrybut I vs,ie my life a lot anHearts enjoy each and every day, good luck be positive, and strong you’ll get through it as we have all done here Hearts

  • ‘Kazzy sorry about spelling x Joy

  • I just want to start with thank you - thank you so much to everyone that responded to my “outcry”. I don’t know what I expected when I posted but it feels like I just got a group of arms put around me and I feel I know have a safe place to express myself without feeling like I am burdening my family with my darker thoughts. 

    as a little update - I went to dental reconstruction appointment today and I only need to lose 1 back tooth - they are not worried about the 2 x at the front as they are not in the line of fire for radiotherapy. I know it’s silly for it to be important to me right now about how I look but it’s the small things I’m hanging onto right now. 

    in for the extraction on Wednesday and then seeing the oncologist on Thursday - I want to ask him exactly what type of tumour I have as I don’t even know if it is Hpv - all I know is that they confirmed what was removed is stage 1 so they are really happy about that. With all your support I feel I want to ask more, rather than bury my head and just plod on through it. 

    thank you again to every single person that has reacted or responded - you don’t know how much this has done for me 

    Karen xxxx