Anxious

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It has felt like such a long time since my husband was told that he had a cancerous lump in his neck - 4th January. Following tonsillectomy and further biopsies, he has now been confirmed as T2N1M0 HPV+.  Met with the oncologist yesterday who confirmed treatment start date of 25th March.  I have managed to keep my anxiety and worries mostly at bay for the last few months, however today it is hitting home what we will have ahead of us and I know my husband is feeling the same.  I expected, after meeting with the oncologist yesterday that I would feel my husband was going to be looked after throughout his treatment by him with updates and meetings, however the oncologist mentioned that after our meeting yesterday he may not see my husband again, which I did not expect.  He is being passed over to a radiotherapy team.  I am not sure at what point there is someone who will just sit down and explain everything that is going to happen and what help he will get.  Had it not been for this forum and all the information and advice shared, I wouldn't have any idea what is ahead (I haven't shared a lot with him at this stage as he does not really want to know too much of what is ahead).  Being new to this, I don't know if this is just the standard process that is followed and if he will get more help and advice once his treatment actually starts? 

On a separate note, the oncologist mentioned a clinical trial aimed at helping oral mucositis and the impact of this.  It is a new trial, a mouthwash which contains an adrenaline mix which he will use before every treatment to see if there are any benefits on the side effects of radiotherapy.  The oncologist seemed keen for my husband to join the trial and said that he would receive more check ups etc, than if he did not.  I have read into the trial and I am just so worried as they don't yet know if/how the trial will impact the treatment success.  I just wondered if anyone else had heard of this?  Thanks

  • I expected, after meeting with the oncologist yesterday that I would feel my husband was going to be looked after throughout his treatment by him with updates and meetings, however the oncologist mentioned that after our meeting yesterday he may not see my husband again, which I did not expect.

    Hi. That's fairly normal. The oncologists job is done for now and that's all he can do till treatment is finished. I didn't see mine again till my first post treatment check up at six weeks, though I did see his registrar once in the middle 

    BUT don't worry. There is a big team behind him. Your husband will be looked after by the radiographers and a team of dieticians, speech and language as well as the chemotherapy team (if he's having any but I'm presuming  that as he has lymph node spread he will get it) He will be reviewed by al these weekly.

    There will be a consent form to sign and all there ramifications of treatment will be discussed

    There will be lots of appointments now, dentist, dietician,SALT, and maybe a holistic assessment from Macmillan.There is planning for the radiotherapy and a mask to be made. He will have, if he hasn't already, bee assigned a Clinical Nurse Specialist who you can take your worries and questions to. He is not being abandoned...far from it.

    As for the trial investigating oral mucositis there are some with low level laser (photobiomodulation....there are threads on it here in the forum) but I haven't heard of this one.

    I have read into the trial and I am just so worried as they don't yet know if/how the trial will impact the treatment success

    That's why they are trials....to find just that out. He doesn't have to take it up but if he is considering it everything should be well explained 

    Hang on in. there. The treatment is tough but doable, side effects can be mitigated, it doesn't last forever and most of all it's successful.

    Best wishes

    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. I also didn’t see the oncologist before the end of my treatment , however, I had the specialist head and neck nurse as well as dietitian meet with me every week for a good half an hour going over everything . They were also in constant touch via email or phone.  

    I’ve also just found out about this trial. I wish I had been offered it 

  • I’ve also just found out about this trial. I wish I had been offered it 

    It's a phase 1 trial so  the primary objective of the trial is to evaluate the safety & tolerability of NG11-2 mouthwash. So they are working out what a safe dose is.

    It will, of course, give data on whether it produces any reduction in the severity of  radiation induced oral mucositis

    It's non randomised so you are not sorted into placebo/new drug groups by a computer but by your clinician

    PBM on the other hand is already showing good results

    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
  • Thanks Dani, I do feel much reassured now...I'm sure it will all fall into place once treatment does start.  

    The side effects of radiation on the throat seem very tough and if there is any way to reduce these it is well worth trying it would seem.  I am just such a worrier and tend to look at the negatives, more so than the positives!  I did ask about photobiomodulation, however unfortunately it is not offered in our Hospital, as this does seem to be having a positive impact.  

  • Thanks DesRoss, that is good to know that this is typical...for some reason I imagined the oncologist would be regularly involved.  Hopefully it will all start to fall into place when treatment does start. Thanks

  • The side effects of radiation on the throat seem very tough

    They are but honestly you get masses of things to help from mouthwashes to morphine. Everything is more or  less ok for the first two weeks then you start to get a little prickle and discomfort. I was tube fed from week 4 and I was 67 when it all started. I managed fine. Yes I had the odd meltdown and that’s normal. 
    Reassuringly quite a few people emerge relatively unscathed and most people recover well. 

    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. The radiotherapy  team are your best friends you’ll see them every day oncology has done its jib it’s not physically possible for oncologist to see everyone every week he or she wouldn’t have time for new patients  so rest assured youre  in good hands. I saw  mine three  in the 7 weeks the. A few times up,to scan then I saw him yearly with inbetween appointments at my local ent. Try not to worry ,re the trial all should be explained to,you by doing trials it’s how progression in treatment happens. But it’s yiur hubbys choice   Treatments hard but take heart look how many of us in here have gone through it and are living a good life. I’m 67 now scary. And have just ridden 30 km on my bike over in Spain building up to my usual, 60/70 km a day. Try not to,worry. I take the attitude can I do anythjng about the issue if the answers no then don’t worry.  BUt that's just me I’m a glass half full girls. 
    hugs Hazel 

    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  

  • I’m 76 now scary

    Oh no you’re not. Wink

    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
  • One of my wort tryouts sat in the sun will amended. L9l,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 Bethie1

    I did not see my Oncologist after initial appointments....however I did end up in Hospital for 12 days due to rapid weight loss....my oncologist visited every couple of days to monitor my condition (Ninewells  Dundee).... oncology/radio support teams were also fantastic...post treatment video calls/conferences were put in place ...with CNS, dietician, therapist....now on 3 monthly appointments.

    Peter