Really wish I had found this forum sooner!!

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Hello All,

Let me start by saying that I am from the US and I have yet to find an online community as supportive and friendly as this one.  I was so impressed I decided to join.  I hope my geographical location doesn’t prevent me from being a member of this great community.

My journey:

I was diagnosed with HPV+ positive tonsil/lymph node cancer in July.  I started my treatment of 5 chemos and 33 radiations in August and completed treatment at the end of September.  I was originally scheduled for 7 chemos however low blood counts wouldn’t support the last two. My oncology team assured me this is nothing to worry about (I worry anyway)

I had quite a few of the most common side effects but somehow was able to manage through them.  I am starting to feel better and regain some of my strength an energy as I await my follow up PET Scan in early January.

i have a history of Generalized Anxiety Disorder (GAD) and now some of those demons are starting to pop up as I wonder:

if treatment was successful? What if the cancer comes back? 

the truth of the matter is, I’m worrying about these things and I don’t even know if the cancer is gone yet, although my Oncologist stated that everything she could see visually in my mouth/throat and feel in my neck looked and felt “fantastic” and that we had an excellent chance (approximately 90%) of curing the cancer. While all of this is fantastic news my mind still trends to the dark side. 

anyone else go through this? Thanks in advance for your feedback and love and support coming to all on this forum from “across the pond” as they say.

More than willing to help anyone going through this journey in anyway I can.

  • Hi Squid 

    T2N1M0 Tonsil cancer HPV 16 plus 

    It's quite natural for us to doubt that the cancer has been successfully dealt with, as time goes on it becomes easier to banish the thoughts of recurrence to the back of our minds.

    17 months post Chemoradio and things are still improving, still getting some niggly throat and dry mouth issues but 3 monthly reviews with oncology soon put my mind at ease.

    Keep in touch, plenty of sound advice and support from others who have been on the same journey.

    Peter.... Scotland 

  • Hi Squid74, welcome to the forum.. congratulations on being on the 'right' side of your treatment..Thumbsup yes, the waiting is an anxious time for us all I'm afraid.. but not long now until your mind is put at ease.. so, feel free to ask questions or have a rant, someone will be able to offer advice/support..  

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi,Squid 74 glad you found us, anyone can join us regardless of where they are, you a very welcome. Post treatment can be a very scary time, the wondering if it's gone or not, and will it come back. Just as your Oncologist told you these cancers are very curable, with high rates of success, many of us on here are living proof of that, I'm 7 years post treatment now, and several even longer. We are all here to help, so stick with us and ask any questions you have. 

  • My husband is 9 months after radiation and chemo and still can’t eat some things and food is hard going down. He always thinks something is still wrong as he thought it would be better by now. He goes and gets checked and now going to immunotherapy every three weeks. It’s a constant worry thinking, he’s not the same man.

  • Hi Squid. 
    Welcome. I’ll add to what the other guys have said about fear of recurrence. It does become manageable and you slowly realise that we get other stuff that’s not cancer. I am nearly six years clear of HPV throat cancer and living really well. 
    This link may help too

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    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 Chris

    I still have trouble with swallowing some tablets, don't eat much beef, chicken or pork (unless well cut up), I eat slowly, drink more with meals, mouth ulcers appear, dry mouth, just little niggles now compared to the harsh treatment regime..... treatment was a hard slog but the alternative was unthinkable...things are still improving.... little by little

    Wives/husbands/partners/carers are always under lots of pressure during treatment, my wife struggled to keep my spirits up when the going got tough...an angel.

    Peter

  • Hi Squid. I’m 6 years post chemo radiotherapy for hpv tonsil cancer with 7 affected lymph nodes. Your consultants right our cancers have an excellent cure rate, keep that in forefront of your mind. I’m lucky I’m a glass half full person I don’t worry about anything I can’t control cancer taught me that. I’m living a fab life treatments hard but if I can do it you can . I still have dry mouth but it’s manageable. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

    1. Hi Squid74

    A warm welcome from snowy Sheffield(South Yorkshire middle of England).

    Firstly congratulations and well done for getting through the brutal treatment regime Thumbsup

    I was a T4 tonsil spread to base of tongue/activity in left tonsil and spread to several lymphs HPV+ Many of us dont get through all of their planned chemo for one reason or another.

    We were all where you are now and it’s a really tough time waiting  for scan results and very anxiety provoking for most of us but also like this lovely group have said try to keep going back to focus on the 95% cure rate for HPV driven H&N cancers .

    Going to the darkside is totally normal Im nearly 12 mths post treatment and my brain still likes to try and take me there sometimes , but connecting with all the lovely survivors on this group is really helpful knowing that so many people are enjoying their lives and some  inspirational members who are several years post treatment.

    stick with us , never a silly question and alsways a friendly person ( or more) to answer your posts.

    Debbie

  • How long has it been for you, when did treatment end?

  • MY treatment finished in June 2023, there is a new normal now, I accept that, hit age 70 this year... have been on a few sunshine breaks... thoroughly enjoyed them...taste and appetite now about 90%...things do improve