HPV Positive Tonsil Cancer

So, i'm not entirely sure how to start. I'm used to talking to people, I do it every single day in my job. I've always been the one helping others. All off a sudden the kilter shifts and i'm the one now on the other end.

I'm 32, I work for my local Ambulance Service as an Emergency Medical Technician, I have a wonderful partner and 3 amazing step children. I have gained more in the last 5 years in finally making a relationship with the girl I have loved since I was a spotty 15 year old.

Roll back to earlier last year, April/May time. I became concerned about a large lunp seeming to form, thought it was just my lymph glands being up after a bout of tonsilitis.

Was given an initial benign diagnosis, twice after 2 biopsies to the area. They thought it was a Branchial Cleft Cyst.

Finally got to see ENT prior to the removal of the area and he began to express some concern about my Tonsil and initially was going to perform a tonsilectomy. At the same time they made me the offer to have my full surgery and have the lump from my neck removed. I was elated. Surgery went well but also on the morning made me aware they had simply decided to biopsy my tonsil.

I am now here 3 weeks post surgery, now with a diagnosis of HPV+ Tonsil Cancer (my diagnosis was about 6 days ago). Today I have been for my CT Scan to confirm if it has remained isolated other than the spread to my Lynmph nodes. (I believe if there are no further spreads my TNM will be T1 N3 M0 with HPV. I cried before I even sat down on the CT bed.

I finished a night shift last night and i'm pretty much at the point of being awake for 24hrs apart from a small break last night at work.

I'm awaiting a meeting come Monday to decide my showdown with this. I have been told to prepare for Radiochemotherapy over 6-8 weeks once everything is in place.

In my line of work i've seen alot of death, even over the last few days i've dealt with people at work being close to that point and having that control of shifting your priorities to that person, even for a short time has kept me sane.

Getting home however, I have lost count the ammount i've cried. I've lost my appetite and as above, sleep at this point would be amazing.

I think i'm ready to battle this but at the same time, I worry about my sanity, my mortality and most importantly my family.

I want to beat this, I know I have to beat this, but finding the strength from what is seeminly an abyss... i'm going around in circles with crying and attempting to be normal! how do you do it? 

They're definatley right in what they say, seeing and dealing are two very different things in Cancer. I have been told my prognosis is good, they have prior imaging of my tonsil before my lymph removal but even with my consultant telling me there is a good if not very good chance of a cure... I still feel numb.

  • Hello Samsamthemabulanceman

    I'm sorry to hear about your recent diagnosis. As you say, the shift from health care provider to the patient can be a big shock but I'm glad that you've found the community here as I know that we have some great members who will be able to share their experiences with you. 

    We've quite a few folks here who have been through diagnosis and treatment for tonsil cancer and are now out the other side of that journey living their lives. In particular, I'd encourage you to have a look [@RadioactiveRaz]‍ (aka Hazel) profile as well as [@crofterlad]‍ , [@Taff123]‍ , and [@Anchor1707]‍ . I'm sure that they will pop along to say Hello! and share their tips and advice with you but a couple of them have also written their own blogs during their journey and I'm sure you'll find some helpful advice and humour within those stories as well. 

    This recent thread started by [@DragonFach]‍ , as well as this active thread, are a couple of places that you may want to post to connect with others who have been through the same diagnosis/treatment. 

    I don't want to overwhelm you with links and information, so I'll just also let you know about our team of nurses you can call to chat to if you feel it would help at any point. They're available Monday to Fri day 9 am to 5 pm on 0808 800 4040. 

    I hope that the meeting on Monday gives you answers and reassurance about your treatment plan. Keep in touch Sam and let us know how you're doing. I'm confident that the community will do all they can to support you on your journey. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi 

    I am so sorry to learn of what you are going through right now.  I was made aware of your post by Moderator Jenn.  I have been where you are now,  I have Tonsil cancer HPV+, mine is in the lymph nodes and has spread into surrounding tissue.  It's technically a T4, but it is small so they have classed it as a T2/T4.   I am further ahead than you as I start 6 weeks of radiochemo therapy tomorrow (Monday 22nd).

    I have a thread on here:  www.cancerresearchuk.org/.../tonsil-cancer-whirlwind-week

    Which you may find helpful to read and more than welcome to join in.  Most of the thread a conversation between myself and a lovely lady, Elona, who has not been diagnosed yet but is going through a rough time with a myriad of tests.  We are also in the process of producing a blog which shouls hopefully go live soon.

    Good luck with everything, keep in contact with the chat,  I found it one of the most helpful places to be.

    Stay Strong

    Al

  • HinSam this is Hazsl I am 30 month post radiotherapy for tonsil cancer with several affected lymph nodes.1 please don’t google it’s  the worst possible thing yiu can do. I was T2N2Nm I had 35 radiotherapy sessions and 2 out if 3 planned chemotherapy.incant lie the treatments brutal recover long but hey I was 61 if I can do it yiu can do it .

    i have a blog www.radioaxriveraz.wordpress.com I give an honest account if my experience if you want to friend request me please do 

    best wishes Hazel x

     

  • Hi Sam

    I'm Ian ( Anchor 1707) and I've been through your journey a couple years ago and thought I would post a link to my blog as I get this from the get go and took me through each stage/week and also includes some tips picked up along the way, including those from others and this should also put into some persective what might lay ahead.

    We are all different but the main treatment side effects etc are pretty much common among all of us who have been though this and it's just a variation of coping mechanims and recovery period etc.

    So although it may not seem like it right now, you do get through it and although it does have its challenges with treatment and espaecially recovery period, there is light at the end of the tunnel as I often quoted.

    Try and stay as positive as you can and the statistical cure rates for this are raelly high now and like yourself I was told by my consultant at the start that he would be looking to cure this and he was right and did.
    Stay off google and stick to sites like here/NHS/macMillan as there is so much mis information out there and can also be out of date.

    I started a thread here while I was going through treatment and its called Radiotherapy for Cancer (Anchor 1707) and under living with cancer and might be worthwhile tapping into as well so see over 1000 posts with advice/support etc from quite a few.

    I have posted a link to my blog below and I hope you find helpful and informative.

    Happy if you wanted to friend here but my email details are on the blog if you wanted to contact direct to chat/discuss/ask anything at all on a one to one basis.

    radiotherapythroat.home.blog

    Happy to help anyway I can.

    Kind Regards
    Ian