Newbie with a couple of questions. (Possibly base of the tongue cancer with secondary in lymph nodes.)

Hi and welcome from me.  You will get lots of great and valuable advice on here from people who have got the T-shirt!

To answer your first point.  No.  Often presentation is first through noticing a lymph enlargement.  It is very common in H&N cancer and does not mean anything really serious in terms of progression, unlike other cancers.  Mine was found that way.  Someone will be able to tell you about the staging as I was never stages as I have a very unusual diagnosis and treatment route.

I was CUP - cancer unknown primary - for a long while.  Not too uncommon in H&N cancers.  If they can't find the primary then come back and I will happily discuss with you.  Also read my profile.

I, after many years of surgery, finally had chemo radiation this time last year.  My hospital was 90 minutes away.  I drove myself until I needed opioid painkillers - around week 3/4 - at that stage it was not safe to drive due to the opioids.  Towards the end you will also get very tired - and will be fatigued for many months afterwards - so it is best to create a support group to help you with the travel.  Friends and family etc.

Recovery is best likened to a marathon rather than a sprint so you need to factor that into your return to work.  Each person reacts to the treatment differently and you may sail through it, but the reality is that is unlikely.

The stats are around 90% cure rate for our cancers.  Hold onto that fact.

Stay with us and we will help you through this.

Peter has given a great answer as that is exactly what happened to him  

Take his advice and have a read if his story in his profile 

Rincewindcoco said:

The fact that there is definately a secondary and that it's moved into the lymph nodes: does that mean that it's stage 3? I can't seem to get my head around the 'staging.'

Not necessarily 

You can be stage two if only one lymph node is involved. 
Cancer research has a good summary of stages here 

https://www.cancerresearchuk.org/about-cancer/mouth-cancer/stages-types-grades/stages-oropharyngeal

Number staging is not used much  

Oncologists tend to use TNM

I was T2N0M0 base of tongue cancer 

Most oropharyngeal cancer is HPV positive responding really well to radiotherapy. 

Rincewindcoco said:

• Would driving there and back after radiotherapy be feasible?

For the first couple of weeks, yes but after that likely no 

Thank you so much for your quick and supportive reply. It must be odd to see people starting out on this journey with no idea what's going to happen.

I really didn't have a clue about any of this until I accessed this site yesterday and its all pretty overwealming and terrifying.

From reading yours and a few other posts it seems pretty clear that the time off work is not limited to treatment and I need to start thinking more in terms of months rather than weeks. 

I just read your profile and it really seems like you went through a lot, I hope things are getting better/easier now. Would you be able to explain what a few of the things mean?

• PEG assessment
• mask making
• Cisplatin/Carboplatin
• Fortisips

PFJTHS said:

The stats are around 90% cure rate for our cancers.  Hold onto that fact.

Thank you for this. I think that has been a massive worry for me, worrying about my children if the worst were to happen.

Please excuse me if I'm asking too much of you with the above and tell me to sod off and google it myself!

Thank you so much again for your reply.

John

Thank you so much Dani. I actually read your blog last night. What a journey! I hope you are well and still all clear. I think I will be pinging back to your blog regularly for advice on things, particullarly the alternative treatments etc.

Thank you again.

John

Thanks for reading it and your lovely comments. I should update it, six years out of treatment tomorrow. 

Ah that's amazing. Very inspirational.

Glad you found my story of some use.

PEG assessment - A PEG is one way that you get food during treatment when it becomes too painful to swallow.  The assessment is just an appointment to plan the insertion of the PEG into the stomach through the abdomen.  A RIG is very similar.  An alternative is a nasal tube.  They all sound pretty nasty but in reality they are OK and help us greatly during and post treatment.

Mask making - when you have radiotherapy it is important that you are always in the same position for each of the treatments.  They make a close fitting mask to hold you in position during the 10-20 minutes of treatment each day.

Cisplatin/Carboplatin - these are 2 types of chemotherapy that you may receive, especially as you have lymph nodes involved.  The need will be discussed with you by your oncologist

Fortisip - this is like a high calorie milkshake.  You can live on around 6-8 of these a day during and post treatment.  There are other branded "drinks" that do the same.  They are prescribed to you FOC.  At some stage you may need other liquid foods, but cross that bridge if you come to it.

Remember that with a cancer diagnosis you are entitled to free prescriptions if not over 60 so don't worry about costs etc.

Hello

My cancer was found the same way: a whistle blowing lymph node.  The primary was at the back of my tongue.  I’m not sure I understand the staging…but mine was designated a T1.

My treatment was surgery to remove both tumour and a raft of lymph nodes, followed by radiotherapy to mop up as the margin around the tumour was marginally less than the ideal to be sure they’d got it all.

As for the driving, I would have been physically quite capable throughout treatment of driving the hour it took us to get to the hospital.  My husband wouldn’t hear of it…..for which I was grateful because it meant that he dropped me off and then went to deal with the hassle of parking.  

 I’ve been retired a while so am probably a bit rusty on employment law, but I’m pretty sure that cancer qualifies you as disabled under the equality act 2010, which makes it unlawful to treat you less favourably than people who do not have cancer.  This doesn’t only apply to employees, but covers you also when applying for a job.  Hopefully you can arrive at a sensible arrangement with your employers.  Recovery is a long old process and you need to pace yourself. 

Al the best with your treatment.

Liz 

Thank you so much Peter. Being on this forum, although terrifying to begin with, has made me feel a lot less isolated already so big thanks for that.

Ah thank you so much for your reply Liz. Does sound quite similar to my case. Can I ask how long you had the Radiotherapy? It seems like 6 weeks seems to be the standard?

Great to know that driving could be a possibility for a little part of it at least.

It's a tricky one with work because I only have a contract unitl Aug 31st and they had hoped to extend it if they could get the numbers to keep the same amount of classes in the school. Once that seemed unlikely they started looking at alternative ways to keep me but obviously with this hanging over me its a much less tempting thing to do. They are all lovely people but they have to do what is best for the school.

I hope your recovery is all going well.

Thanks again.

John