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Tonsil Cancer

MDS82
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Hello everyone 

I have this week been diagnosed with tonsil cancer which has spread to one lymph node in my neck. I understand it is stage 2. I'm a 37 year old man from Kent but have been living in Australia since 2003. I have a beautiful wife and daughter and Boston Terrier dog. 
 

At the moment I think the news is still setting in. I've been very scared but am up for the fight. I've read about a lot of posters experiences and must say that this forum has both inspired me and compelled me to open up. You're all so brave and very decent. 
 

I am yet to understand the cause of the cancer and therefore I don't know my treatment plan. I discovered all of this after a long journey to understand my sick health of recent times and was always told by a terrible ENT in Syndey that it's not cancerous and a Tonsilectomy at end of Jan would suffice. My gut told me otherwise and an amazing ENT in the Gold Coast gave me the time for a second opinion and confirmed it is cancerous. I had a CT and PET scan the next day which confirmed I have cancer. 
 

The biopsy taken is inconclusive. Should this worry me? I understand not? I think I'll need a partial Tonsilectomy to get a larger sample size if Biopsy remains inconclusive after further testing. And then my course of treatment will be decided. I am prepared to go through the full process as no news I've had has been good news so far. 
 

Appreciate your insights and support guys. And all the best to you all that are in the fight.

 

  • Offline in reply to bentlyboy

    Good news re teeth BB. All the best for today mate.

  • Offline in reply to Newlymarried

    Thank you Emma for sharing your experience with me and I am so pleased that your husband is now ok. 

    Unfortunately I have been confirmed as only the 14th case ever where the tonsil and node cancer is small cell. 14th case ever in the world?!?!! Hard to believe. It is HPV16+ but unlike Squamous cell, the HPV cannot be confirmed as a good sign. There is not enough literature.

    What does this mean for me? Three types of chemo and 6 weeks of radio on both sides of my neck. I know I can pull through becuase I have no choice. But I am afraid and determined to explore other options. Unfortunately time is an issue.

    After careful consideration I have ordered some CBD oil to assist with the side effects of the chemo (yet to have it out with medical team regarding my intention here).

    I've also emailed a specialist in Australia regarding Proton Therapy. They may send me overseas for this treatment along with chemo. I'm hoping the rare nature of my case and my age will help for a favorable outcome. I'm also a UK citizen so have emailed a hospital in Manchester to see if they could take me in. My whole family is in the Kent and my wife's in Dundee. We would love to come home for treatment, expecially as advanced as what Proton appears to be.

    Thanks again for your concern and for reaching out.

    Mike 

  • Offline in reply to MDS82

    Hi guy's, CT scan went to plan, they injected a dye into my vain and hopefully the results will be better than last time. Where seeing the consultant and specialist team tomorrow and should be informed of the next phase of treatment. I have everyone is well and bearing up looking for to Christmas . Regards BB 

  • Offline in reply to bentlyboy

    Good news BB. Stay positive and let's hope for good CT results tomorrow my friend. 

  • Offline in reply to bentlyboy

    Hi BB

    hope your scan results were ok and you're going to be able to relax at Xmas.

    im starting chemo in the next week or so and radio on 20 Jan. Still feeling strong and positive. Hope you're too.

    To health and strength

    mike 

     

  • Offline in reply to MDS82

    Hi Mike, merry Christmas to you and your family and to all on the chat room. I had another biopsy yesterday on the other side of my neck (just precautionary) and due to have another biopsy on Friday on my tummy. I'm having surgery on the 2nd of January on my throat and neck, (unless changes are needed regarding my tummy) I eager to get started but not looking for to the pain, the consultant advised me that it's going to be painful . I have no worries, morphine should help. I'm glad you spirits are up enjoy the day and the family dinner. All our thoughts and with you BB.

  • Offline in reply to bentlyboy

    Hi BB

    Hope you had a good Xmas. What's the crack with the biopsies? Hopefully they not cancerous?

    I've not gone down the surgical route. Not my choice - chemo and radio is what is going to work best for my body. In a way I'd rather surgery although have heard the stories re recovery when researching about having my Tonsils removed. Short term pain for long term gain was my conclusion. I hope you do get that because everything I've learned to expect from radio sucks!!

    I'm now day 3 of 3 from cycle 1 of 4 of chemo. Two drugs. Spent Boxing Day and day after in hospital just to get things started. Feeling really good and today have been for a swim in the ocean and yoga! Eating heaps to put on some weight prior to radio and enjoyed a 2 hour nap today. All strong and positive thoughts. Sending them your way too!

    Health & Strength

    Mike

  • Offline in reply to MDS82

    Hi Mike, I had a biopsy on Christmas Eve on the other side of my neck and yesterday had 3 x key hole surgery on my tummy, I'm feeling a bit rough at the moment and had a bad night. It's looking like my next operation will be put back a week (9th January) so they can assess the results. Still feel strong , my wife has been amazing and helping 100 % I'm so fortunate to have her. Meeting with the consultant on Monday and Wednesday so hopefully I will have plan of attack. I'm glad your getting on with the treatment in a positive attitude and try to stay strong even when the days get rough, enjoy the swimming . Kind regards BB.

  • Offline in reply to bentlyboy

    Thanks for your support and I send it back in heap's. 

  • Offline in reply to bentlyboy

    No worries mate. And i know what you mean regarding supporting wife. I cannot believe what levels my wife has stepped up to and we've been together for 12 years! She's an angel!

    Keep strong mate, although sounds like you're in the wars. Always happy to chat on private message too. Hazel and Ian have been great for me too.

    Are you a football fan?

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