42, newly diagnosed and terrified

Bumblebee said:

I came onto several online forums looking for reassurance but all I’ve come away with is a sense that this type of cancer and the treatment/long term effects are awful. I’m struggling to find any sense of light or hope. I can’t imagine any outcome in which life goes on as normal, even if treatment is effective

Right! Stop there! You have now found the right place. 
I had the same cancer and I’m here six years later with the only evidence being a slightly dry mouth. 
The treatment is a real challenge and it will knock you sideways for three months. After that it’s a bit of a marathon but honestly you will start feeling much better fairly quickly after that  

So. The treatment is tough, it works and most of us make an uneventful recovery. 
From biopsy results to treatment start was three months for me and I’m still here and very very well

Stay with us. There is always somebody to talk to and answer the many questions you’ll have 

PS

And most oropharyngeal cancer is caused by HPV virus which is very sensitive to radiation. Cure rates are in excess of 90%. So hold onto that. 
This thread might be helpful too

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Thank you so much for your reply. Things feel so bleak right now and it seems like positive stories are in the minority. How did you cope with the waiting? 

Bumblebee said:

Things feel so bleak right now and it seems like positive stories are in the minority.

the fact that we're all here, offering help and advice to the 'new faces', is a positive, isn't it? We have all been where you are now, and as terrifying as it looks now, there is light at the end of the tunnel..take a look at this, if you haven't already.. Helpful tips for those about to start treatment.. - Macmillan Online Community  Ask away with anything, there will always be someone willing to help you through this. 

Hiya

Mine was SCC tonsil cancer with one lymph node affected. Had two surgeries, one where they located the tonsil primary and cut most of it out, plus they removed the tonsil.  Then the neck dissection where they removed 41 lymph nodes but thankfully only one was affected. They also removed the rest of the primary.  I then had 30 rounds of radiotherapy. Am ok now 14 weeks later. I can’t speak re chemo as never had any but RT wasn’t bad for me. No burns, fatigue or worsening symptoms  two weeks after it ended. Just the usual dry mouth really. I’d say the worse thing about the RT was loss of taste. 
Regarding the psychological side of it you must be worried sick, especially at your age with a young child. I was a wreck. Inconsolable. You’d do well to buddy up with someone in here whose case is very much like yours. You’ll learn a lot. 
Once I got my treatment plan in place I felt a lot better. My surgeon told me it was curable. That really helps. You’ve got this! 

Hi Bumblebee. We all know the feeling it's such a shock to be told you have cancer, so it's great that you have found us, and we are all here to help as much as we can. Once you start to get the results and have your treatment plan you will feel better about it all. It's no good trying to sugar coat the treatment, it's no walk in the park, and there are many ups and downs along the way, however it is all doable,  Be assured that these cancer respond very well to the treatment, with very high cure rates, and this forum full of living proof of that. Any questions or worries just ask, stick with us, we're here to help.

Ray.

Bumblebee said:

How did you cope with the waiting? 

I knew I had cancer so that was one thing out of the way. Next was the realisation that there was absolutely nothing I could do to alter the outcome. Worry is interest paid before it’s due. 
So I kept busy and put it away. 
Once there is a plan I promise you will feel better. Cancer sucks, sometimes you think it’s so unfair. I suppose it is but it is what it is and you have to make the best of it. It can’t be undone. 

I was in total shock when diagnosed, age 70, stage 3 tonsil cancer also in a node in my neck, the treatment is not easy but has a 90% cure rate (HPV16+), the posters on this forum will be able to help you get through each stage, invaluable advice and great support, try to stay away from Google it can cause unnecessary worry.

At 42 you are young enough to progress straightforwardly through the your treatment plan, as I have stated it won't be easy, but it does not last forever and not everyone gets all the nasty side effects

Long term? I'm 2 years out now, reviews every 6 months, I have just returned from a nice holiday in Greece, many on here are doing similar, many are being much more active, there is a new normal for us but it's not really that much different from the old normal.

Hi bumblebee- welcome to the club - here you will find the support, help and understanding from folk who have been where you are, others that are on their journey and others that are just at the beginning.

no one cannalay your fears and concerns, but the help and support from the amazing group of folk on here will help and support you all the way - and with some of theamazinvnigjtowls, it’s almost 24/7.

I have similar diagnosis to you, been through some of the treatment and yes it’s tough, but so are you - at a point you’ll find the fight and spirit yourself - the help is so so important- a couple of things to think about is don’t bottle it up, talk to folk, some wonderful folk on here have helped me through darkest of times, and the other is talk to macmillon re your finances, let them help you deal with something that could overload you.

Afuter a period, you’ll find that you are with a group of lovely amazing folk and we help and support each other, no matter what.

sending you Strength and hugs 

Nige

Hello Bumblebee

I'm so sorry to hear what you're going through - the uncertainty is awful, I know. You've come to the right place here. Stay off Google, there's a lot of negative nonsense on there! My diagnosis was similar to yours. I didn't need to have surgery. 6 weeks chemo & radiotherapy (CRT) was tough but here I am 3 years on with just a dry mouth to show for it.

I hope you can line up friends and family to support you and your daughter through this. Once you have a treatment plan you know where you are. This forum is brilliant for getting answers to any questions or just having a rant and getting support - everyone on here has been through similar.

Sending you love & good luck

Catriona