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

hello and welcome. 

I also had a lump in the neck, secondary. Had a tonsillectomy as the surgeon had suspicion around that tonsil and also a removal of a part of the base of the tongue. After surgery, like you, my surgeon confirmed that she couldn’t see any clear sign of cancer in my tonsil. She said they squeeze the tonsil and feel for lumps etc. She couldnt feel it in there and I remember feeling down about that however pathology confirmed a week later that it was in there so don’t feel like that’s not where it is, it might well be. 

With regards to the RT, I live approximately an hours drive from the hospital where I received RT. I drove the first two weeks but after that it was a mixture of family and friends who took me up and back. For context, I’m 39, live an active, healthy lifestyle and thought after two weeks that I could drive up myself for the whole 6 weeks. Not a chance. Some can do it, I think there are some good stories from folk on here who managed it, I couldn’t. I got really fatigued and tired and the removal of stress over parking and whatnot really made a difference. I’m four weeks post RT and I’m still knackered. My advice would be to get plans in place for people to help out and if you feel like you can do it, you can always cancel them. It’s better to have it in place and not need it, than to not have it at all. Also, check with your local authority cancer groups/MacMillan as there are often volunteer drivers who may be able to give you a lift and back. I was offered a lift for each of my 30 days through my local authority. 

keep on this forum, Peter, Dani and others are really helpful and we can all chip in for advice when you need it

Thank yo so much for this Chris. I'm 42 and am pretty fit and active so quite similar. Like I said to Pete I had no idea of the scale of the treatment and recovery so it's all very daunting but you all chatting is really helping put it all into perspective.

Great top tips with the lifts and volunteers, I will definitely look into that.

Thank you for taking the time.

Hope the recovery continues to go well.

Hello John - that’s so much easier than your nom de plume!

I was (that should probably be ‘am’) part of the PATHOS trial and was/am one of the group which received a lower dose of radiotherapy post surgery.  Mine lasted 5 weeks as opposed to the normal 6.

I think you may find that driving is possible…even if you choose not to…well into your treatment.  Probably unwisely I drove a round trip of 100 miles the day my treatment finished to pick up my husband’s Christmas present…..but I wasn’t on opioids.    If you can’t drive though, might be worth asking if your Trust organises patient transport.  Mine did and they had organised it for me automatically when I was given my treatment schedule.  I didn’t need it and cancelled it, but nice to know the backstop would have been there in extremis.

No one here John will ever tell you to ‘sod off and google it yourself’!  You are far more likely to be advised to stay off Google as it’s likely to be inaccurate and out of date.    It’s an overwhelming diagnosis and so much gets thrown at you from every direction.  Ask whatever you want to.  Happy to share my experience: the good the bad and the ugly if it helps.

Take care

Liz

Ah that's interesting. I wonder if the lower dose helped with the energy levels and your abilty to drive.

Yeah someone else mentioned the posibility of lifts to the hospital, I shall definitely look into that, it may be needed. My family are all still up in Scotland and I'm in Cambridgeshire so less of a local support network.

Thank you so much for your kind words. This is all very scary and daunting but this group is already helping me feel more informed and less isolated.

Thanks.

John

The lower dose quite possibly did help….but I have no way really of knowing.  Might just be that I’m a stubborn (my husband would put it rather differently) so and so who refuses to give in to this!  Joking aside, I really hope that the trial results in a kinder treatment regime being the norm not the exception…heaven knows, it’s tough enough even at the  lower dose..but that’s some way downstream.

 I wish I’d found this group before I started treatment Apart  from being able to talk to people who had experienced the same thing, it would have helped me know what I didn’t know and what questions to ask the team.   The tips and advice Ive picked up since has helped me a lot.

Best wishes 

Liz

Yeah I guess it's all subjective and you only know your own experience.

I'm going to come back and make notes of treatments and things people have suggested that I can take along with me to treatment planning so I can ask the right questions.

Thank yo again!

John

Rincewindcoco said:

I'm going to come back and make notes of treatments and things

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

I think as per the recent a verbal confirmation my tongue cancer was T1N0M0 if I get it right. T referring to the size of the tumour and category based on this.

I asked my consultant about the stage too and grade because I read somewhere that was a thing. I didn't get a response to the stage other than it's T1 and nothing for the grading. 

I think you might be told mire once the know the depth and spread of your primary? 

As for your contract. As someone mentioned (and I am a people manager who works with contracts) cancer is protected by the disability law and cannot be a reason for dismissal or not extending the contract. 

If anything happens, you should demand a written reason explaining their reasons to not extend and you should join an union if you haven't already.

I used to work for the council and in an unrelated matter I had I can tell they don't like scandals so they should be cautious to not mistreat you. 

Hello John

Just popping up to say hello and welcome. My initial symptom was a neck lump too - very typical. I had 6 weeks CRT (chemo + radiotherapy), no surgery. It was a tough few months but it worked a treat and here i am, two years on, feeling 100%. I was lucky to live a short bus or tube ride to the cancer unit, but my brother drives people to appointments as a hospital volunteer so do look into those services.

Sending love & solidarity - ask anything on here and let us know how you get on

Catriona

Many thanks Catriona. So pleased to hear you have made a full recovery. Thank you for taking the time to say hello.