Awaiting diagnosis, Hello.

Hi Ashgate, welcome to the forum and sorry to hear what you are going through.

I totally understand the fear, back when i was diagnosed (tonsil with spread to the lymph node) i had that same fear and even posted considering refusal of treatment. Last week however i got a clear scan (no cancer detected after treatment)

Head and neck cancer is one of the most treatable cancers there is, especially if it is HPV induced cancer. It isnt an easy journey but it is definitely doable. So while nothing is guaranteed, if this does turn out to be cancer, your odds are excellent

Finally i would try to avoid over googling, even the scientific publications can easily be taken out of context by us as we are  not medical professionals

Ahead of my consultant meeting i read up on my cancer, and came to the completely wrong conclusion that i had little chance of survival.

Anyway i hope the diagnosis is that it is not cancer, please let us know.

Trev

Hi Ashgate. I’m pretty sure the first thing everyone on here will say, is stay away from Dr Google, I think most of us made the mistake in the beginning before finding this site, which is amazing and so supportive.

I hear what you are saying about being ready for the diagnosis either way (hopefully clear) and worrying more about others, I was the same, my kids are age 5 and 6, my only other family is my elderly mum 400 miles away, I kept it from them till the last minute but all have been fantastic, I think because I was very positive when I told them, even the kids, Macmillan nurse gave me a book on how to speak to kids about cancer, they said this kind of cancer is very treatable with fantastic results there is no need to scare them unnecessarily, this really sunk in for me so my kids have never been frightened even when I had to send them away for 3 months while I had treatment.

i found to my surprise that I actually believed myself when I was being positive and the more positive I was the more I believed it (actually I’m a scientist and I read some of the scientific paper, which also confirmed the positivity).

There are many amazing people on here who have helped me through different stages, please try to be positive, your team should you need them have your back and so does your family.

Stay positive and stay safe

Pamela x

Thanks to those that replied so quickly, it's very easy to feel alone and so those responses were appreciated. I will keep this thread updated with whatever happens.

Hi Ashgate First  keep off dr google . Like others have said head and neck cancers especially HPV are imminently curable. So take a breath don’t think dark thoughts wait for results. If you’ve joined our club there’s lots of us on here who have been there got the t shirt come out other side. !
Treatment is hard but doable big I can do it anyone can !!

Best advise is try to remain positive and again keep off google 

Hazel x

Unknown said:

I am ready for a diagnosis when it comes bad(or good) but not sure how I address this with my elderly parents. But my most crippling fear is that my wife and children 16, 9 and 5 will have to watch me fail and die and the destruction that does to loved ones. I need to get my head round how to deal with that.

Hi Ashgate. I understand how confused, frightened, and poleaxed by all this you must feel but if you do have cancer this is not going to happen. This cancer is eminently curable. HPV base of tongue cancer is what I had and I am nearly two years out of RT and fit, well and enjoying my retirement.

Macmillan have a helpline you can call seven days a week 8am to 8pm This is the number  0808 808 00 00

Please ring them if you are feeling despondent. 

There is also an excellent booklet Talking to your children about cancer

Hazel, who has replied to you already, and I have blogs you can look at when you're ready.

This is not a death sentence ....

Hi Ashgate

I too was diagnosed with base of tongue cancer in May 2018.

I can only add to the previous replies you've received that many, many of us have received similar diagnoses, undergone treatments and are still here.  It's very easy to get caught up in fearful thoughts and imaginings, especially if you get your information from google.

My consultant was supremely positive when she gave me my diagnosis and I'm pleased to say I was able to continue that positivity all.through my treatment and when talking to family.

I'm sure once you have all the results and a treatment plan in place if required you will start to feel.less anxious.

I wish you all.the best.

Linda x

Hi all, possibly an unfair question as I realise we're all different but could any of you give an indication of them length of treatment (chemo) to expect? 

Hi. It’s usually during the radiotherapy for six weeks. People have one dose weekly or a higher dose three times. Not everybody has all the doses. It depends how you react to the cisplatin. 

Hi Ashgate,

Your treatment may be different to mine, i had 30 radio and 5 chemo sessions, the radio was daily and the chemo was once a week

It was always emphasized my main treatment was the radio.

Hi I was due to have 3 sessions of chemo day 1 day 21 and day 28 as it happened after 2 nd chemo my lump in neck had gone so jointly decisions were made with me and oncologist not to have the 3 rd chemo. I hadn’t had any side effects no tinnitus sickness with previous 2 so why risk anything   A side note chemo isn’t the main event it is an  addition to the radiotherapy. My chemo days were 8-10 hours long of weekly tend to be around 4-5 hours. Cisplatin which is usually used you don’t loose your hair radiotherapy may cause some hair loss at bsck of head. 
hope this helps 

Hazel