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Virgin throat Cancer sufferer

Vatch
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Hi all

I have just been diagnosed with Throat Cancer (28th April) and although at the moment Docs can only find the secondary site (right neck lymph node), they are still looking for the Primary - I've had my CT and PET CT scan done and nothing found, so I am now going in for multiple biospsies to find that prime site

Although this started off very rocky I have been told that its not only treatable but cureable, so I suppose i am luckier than some on here and aware of it

I am a very positive person and am just taking this all as it comes to me .... as I am sure you are all aware there is a lot to take in when you are first diagnosed

I think the biggest problem with me at the moment is i dont feel ill .. I just had a sore throat in Feb, which did not go, my glands were up, but one never went down so went to the docs who sent me to the hospital and within a few weeks i was diagnosed

I am sure at some point the treatment is going to hit me but i am still unaware to what extent ... and i know its different for everyone

Whilst Docs are still trying to find the prime site I am getting close to starting my Radio and Chemo Therapy for 6 weeks .. I have also been told that the Chemo should get rid of the secondary tumour in my neck lymph node so they are hoping not to operate and i wont lose my hair ... but i will deal with that one when i get there

As I said, I have difficulty defining how ill i really am (not as bad as some of you on here i know) I still play Squash, Football and take my wife Salsa dancing, but i guess whilst going through the treatment i am going to have to slow things down and look after myself

So i just wondered if any of you on here had gone through similar treatment and if there any advice you would like to offer

From what i can see constipation appears to be a big issue and some suffer with terrible sickness

But from the point of starting my treat whats my rollacoster to recovery

Oh and any information about having a peg fitted and how that works and for how long going forward would be appreciated

onwards and upwards

  • Offline in reply to Vatch

    Hi Vatch,

    My RT started on  Monday and my first CT was on the Thursday of that week. I would check in for chemo at 0800hrs and the RT tended to be late morning or early afternoon. The RT team were very flexible in that I could pretty much show up at any time and they would slot me in.

    I can be a bit of a control freak as well - I quickly learnt that it's really best to go with the flow until such time as anything happens that necessitates anything over and above the treatment schedule (unusual side-effects, medication issues etc.).

    I also found that the Macmillan nurse was a really useful conduit for advice and support for anything that might crop up. Not sure what your set up will be but I had a direct contact phone number and a personal email address - both of which were monitored and responded to. They can ask a question of the consultant on your behalf without having to wait for your next appointment for example.

    Good luck and try and enjoy (or at least tolerate) the ride!

    Simon.

  • in reply to Vatch

    Do give us a call on the helpline Vatch if you want to talk things through with one of the nurses here, the number (0808 800 4040) is free to most mobiles as well as to land lines.  I hope everything goes well

    Martin

  • Offline in reply to Vatch

    Hi Vatch

    I am aware that I have been very lucky not only in the cancer I had but in the way I coped with the chemo.  I certainly hope you cope as well as I did.  A few off days and some loss of appetite and taste is a small price to pay.

    Work has been fine and it has been nice to get back in to it allbeit part time at present.

    Tomorrow is my final (partial) treatment and I am looking forward to not having to visit hospital every three weeks.  That said am told they will want to check on me in four weeks.  Hopefully by then the CT Scan and Bone Marrow wil have been done so I do not need a further check up when these are in.  After that it will be 3 monthly check ups.  Have been told 3 monthly checkups will be for at least a year then on to six monthly.  Will wait until tomorrow to find out for certain.

    Good luck at Addenbrokes.

    Gill

  • Offline in reply to SleepyCat

    Gill, hope all gos well, Gary

  • Offline in reply to Vatch

    Hi Gary,

    Although we have spoken on here before I have just come across this thread. Sounds as though you've already had a lot of good advice from Simon, Gary, Gill etc (well done Gill for completing your first week back at work!) also sounds as though you are soon to begin the same treatment journey as some of us had recently.

    I remember feeling quite anxious about the side effects and wondering how bad I would feel as I didn't know if I would be well enough to look after my little girl who was two at the time, however it was a few weeks before the side effects kicked in. Like Simon, my 6 chemo sessions were 8 hours, once a week every Wednesday and RT was everyday mon to fri which only lasted 10-15 minutes each day. It was all of the waiting around that bothered me the most!

    I liked your comparison with a train, chugging along! That's me at the moment, slowing chugging back to normal! Sounds as though you have supportive people around you which you will probably need to rely on towards the end of treatment and for a short time afterwards but you will easily find yourself getting back to normal fairly quickly too. If you can have a peg, take it. Especially of you are struggling with a sore throat already. It took me a couple of weeks to mentally accept my peg and start using it but once I did it became my life saver!

    Feel free to ask anything you want along the way, it's good to be able to return the same help and support I've had from all of the lovely people on here (although of course I wish we didn't need to suffer such an awful thing).

    Good luck, keep us posted

    Nicola.

  • Offline in reply to Nicola2209

    Hi Nicola, been away yet?'I out of treatment. Got a bit of neck burn which is getting worse and sore throat but cant grumble. Good Luck again Vatch, Gary

  • Offline in reply to Guzzle

    Hi Gary

    Final treatment done and dusted although it was getting on the 3pm before we left having arrive at 9am.

    Have a bone marrow booked for 27 June (very big ouch) and waiting on appointments for PET Scan and ultrasound scan on my liver.  They want this one as some of the liver results have been off although they have settled almost back to normal now and this is just precautionary.  Hopefully these will be done and results back by 7July which is my four week appointment.  Hopefully can get updated then and from then on it wil be three monthly check ups for a time before going on to six monthly ones.

    Have replied on the Branchial Thread and suggested you try an Aloe Vera cream which is supposed to be very good for burns.

    Best wishes.

    Gill

  • Offline in reply to SleepyCat

    Gill, thanks so much.Im following your treatment with everything crossed for you, Gary

  • Offline in reply to SleepyCat

    Vatch, There is a great blog on word press called 'Theo the Radioactive Man' which is very informative about this treatment, G

  • Offline in reply to Guzzle

    Hi Gary

    Thanks.  will keep you posted.

    Gill

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