Hi Cotswold boy

thank you hope you find the blogs help you keep referring back to them if you need to. Plus any questions just ask or send a friend request I don’t mind helping anyone out. I had some great advise on here and through personal messages 

h  

Hi Cotswold Boy

I have just accepted your request

Amyque, I wouldl try to cover what you asked but I literally had no symptons. 

I had a large lymph node HPV positive with an unknown primary. This is very common with HPV, and has the best success rates for this type of throat cancer.

I have had trans and a neck dissection  because I'm only 37 and my consultant didn't want me to have Chemo.i actually got the all clear after just surgery, this has now been over ruled and I will be having radio and no Chemo. The radio has only been offered to me but on  the account of my first consultant I will be taking it (formal meeting on monday). It was In my mind to have it the whole time to ensure it was all gone so I want piece of mind. Second to that my first consultant was amazing and the big boss has agreed that due to the size of the node it is preferred. Apparently the room was split so they opted for more not less.

I am very positive with this diagnosis, it takes a while after the early shock but with the success rates we can all be very positive. I can only say though this has been one of the hardest things I have ever been through and happy to help anyone along the way aswell because support is the main thing we all need. 

Anyway for those who know the diagnosis stage I was 

T0. N1. M0

For those who know this was very early stages and I count myself blessed and very lucky.

I hope you are all way and apologies for not responding that regularly, after the all clear I went back to work and started to try and forget about it but glad now I am have radio in the weirdest way possible. It's all about beating it in the mind for me.

X

 Hello Jimbo so good to see that you have had your op and getting yourself ready for radio  you sound in great form which is so good to read...if you are having 30 treatments of radio dont worry and time passes so quick... when i was having my radio i used to lie there and dream of all the happiest times in my life...the day i married  my husband,my children family,...  all the little children that i had the privilage to teach..... I just want to wish you the very best wishes to you and your family.... Dee

Hello Demc

Thank you for the encouragement, as I say, this is as much out of choice as is required. I wanted piece of mind as I was told I would have radio the whole way through for them to tell me 3 weeks ago I was cured.

I know it's not a easy ride but for me it's about a sane mind, I'm finally in a place to also help others which is nice also and am looking forward to getting on with my life once the radio is finished. 

The treatment plan seems to conflict between various stages of diagnosis , first I was told just surgery, next it was surgery plus radiotherapy, and after my PET/CT it was suggested it would only be radiotherapy subject to seeing the MRI. No one has mentioned the chemo word yet thankfully.

Jimbo I am T1 N2 M0

Monday I have biopsy of tonsil area and three teethto be removed in the afternoon, up early Tuesday for MRI, i hope after biopsy I will be OK to get up for MRI.

Cotswold Boy, you are very early aswell. The usual treatment for many is chemoradio therapy. The Chemo from what my consultant said is when the cancer is in more than 1 node or has split the pod of the node and exited it , that's when they use Chemo. 

I was told 3 weeks ago that I didn't need radio and questioned it several times. I was told to get on with it as it wasn't recommended. The top consultant has now said upon reviewing my case that because the node was large he would recommend it. To be honest even though I know it ain't going to be easy I'm a lot more comfortable with this treatment. At least this way I know that if there were any stray cells the radio will remove them. 

My understanding is that they like to increase treatment so maybe you will end up with radio aswell. At least we know the cancer is gone though. 

Hi Cotswald boy.

Yes I argee that plans do change at various stages. The day before my op I had sintigraphy test, thats 4 radioactive injections into tumour(not nice). I was to be oral surgery only as I had been T1N0M0,but that changed as 3 nodes lit up on camera one large 2 smaller. So I woke up with a neck dissection and news that the cancer had spread(in just a few weeks since CT). That was not what I wanted to hear.

I get histology results in two weeks and will get told then what my TNM status is. The dreaded part of treatment plan too, as that will be changed now as well. I think I was deemed as not suitable(fit) for chemo at the MDT meeting.

Take care & keep well xx

Dear Amyque.

My heart goes out to you. I know just how you are feeling. Even more so as you are a young mum.

You have to hang onto hope though. Statisticaly only one in ten referrals turn out to be cancer,which means a 90o/o chance that its not cancer. I know stats wont mean a thing to you feeling as scared as you are.

Quite a few of your symptoms could be related to other things and not cancer.

From what I can gather many people that come along to post here and talk of pain,sore throats,swallowing problems and a host of symptoms rarely, if ever come back to say it was cancer. Indeed most folks that do have cancer had no symptoms or very few symptoms, thats the nature of cancer very sneaky.

Now that you have an ENT appt, and ultrasound for tomorrow hopefully you will get some answers soon,but please try to stay positive. We have a saying, Its not cancer till they say its cancer! Try keep that in the forefront of your mind. You need to be strong for your kids as well as yourself!

I was like you,alone and overthinking things. I joined in here and have seen nothing but help, kindness and friendship from so many people. We are always around if you feel you need to talk,get thing off your chest or just have a cry and a rant so keep on posting it does help,well it did for me:-)

Take care sending you a nana hug :-)))) xxx

Hi Clara, 

i had the ultrasound and not not very good news, so the lymph node I could feel on the right hand side turnded out to be just a reactive lymph node. She scanned the rest of my neck and said “ sorry to tell you but you have multiple suspicious lymph nodes on your left side of the neck - located in the deep cervical area of my neck. Not one or two but multiple suspicious. She is sending me for an urgent ent which should be Thursday. Off course I have googled it and from what iv researched it’s likely some spread from and oral cancer, that would make sense as iv had lots of textbook signs for over a year! Iv been crying all day and it just feels like it’s taking ages for a diagnosis.

im meant to be getting married in May and now I’m scared of my future. 

Amy

Listen, multiple lymph nodes are generally the case. From my understanding I was lucky to only have it in one and they were surprised by this. You have to remember though 1, you have not yet been diagnosed with Cancer 2, if you are you have one of the most treatable ones. 

I'm not gonna say it's easy because it's not, I've had several days of crying, damn I've been crying today. It's not easy but the main thing is we can all get through it. 

I am due to have preventive radiotherapy, (I am cancer free now). But the refusing to give me this treatment then offering it to me after 2 weeks has really played with my head and emotions. I have been told I'm having my wisdom teeth out aswell (great more pain) and then will start in about 4 weeks. 

Right now feel excited about your wedding, that's what I would say. It's easier said than done I can honestly say that but just try. I hope your news comes back positive and just know regardless this will eventually be over and you can enjoy the rest of you life. 

X