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Soft pallet throat cancer

Barb21
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We have been given the worse news about a family member with who has throat cancer . The large tumour is on the soft pallet and we are waiting for a pep scan . Is anyone able to comment on their experiences of this type of cancer? What is consider large in terms of tumour size ? 

  • Welcome to the forum Barb although I am sorry to read a member of your family has been diagnosed with throat cancer.

    We do have two members [@paulaw68]‍ and [@LynneM]‍ that have discovered their palates have been affected by their cancer diagnosis - slightly different to your family member's - and now that I've mentioned them in this post they will hopefully pop by to say hello and share their experiences with you.

    To find other discussions about this type of cancer just type some keywords e.g. throat cancer in to the 'search forum' option above.

    I hope this helps Barb and that the wait for the pep scan isn't too much longer.

    Kind regards, 

    Steph, Cancer Chat Moderator

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    Hi barb, my name is paula and i have just been diagnosed with stage 3 T3N1M0 tonsil / soft pallet cancer,

    the grading sysytem you see above grades a cancer from clinical observation, ie the symptoms you present with and the results of initial tests.

    my tumour started in my tonsil as a small ulcer but has been aggresive and in 3 weeks has taken the right side of my soft pallet, the hole is about the size of a a golf ball cut in half..so more than 2 cm but less than 4, its graded a three because it has left the original site of the tumour in other words it has migrated out of the tonsil and into the soft pallet. so that makes it a T3, it would have been T2 if it was contained within the tonsil tissue,

    the N1 stands for the number and size of any lymph Nodes, I am lucky and only have 1 lymph node which is less than 3cm so i am N1, you can have several lymph nodes and if they are all smaller than 3cm you are still N1 i believe you become N2 if they are more numerous and bigger etc etc,

    M0 means that at present i do not present with any Metatstases hence M0, i have only had a head and neck CT scan so far. they say I dont need a PET scan but I live in NZ and tests are very expensive so I wonder if they are just being a bit tight!...lol

    now they should give your family member a grading...or at least a staging. i came out stage 3 of 4

    the more nodes the more significant the migration from the original site...but dont panic if there are no metastases or signs any were else lymph nodes local to the site can be included in the treatment plan. 

    an important thing is if the tumour/cancer is HPV positive, if its HPV positive then survival rates are significnatly improved...mine is HPV positive.

    i am 49, non smoker , like a glass of wine or a cocktail or two on occassion , how old is your family memeber? if they are younger or around 50 it is more likely to be HPV positive statistically ...sorry i am a nurse so sometimse i get a bit statistical!!!!!! lol

    I hope this helps, its scary but treatable in most cases, the road of treayment is RUGGED i am told but I have not started yet so can not advise on that. Type in squamous cell carcinoma of the tonsil to the search on this cancer chat site and you will find the chat a few of us going through the same thing are visitng , theer is a guy on there called Vatch who wrote a blog through treatment which whilst confronting is written with humour and provides a lot of info, i googled "gamma ray gary" to find it. 

    I wish you luck ...

    Paula

  • Offline in reply to paulaw68

    Hi Paula, I hope this doesn't come off as crass or rude but I do feel like it needs to be said as I've run into some of your posts. It's very good that your cancer is HPV+ as indeed it does generally respond to treatment better - however, how well a cancer responds to a treatment is individual and at the end of the day the best thing someone told me on here is that you are a statistic of 1, whether you're HPV+ or -. There are many factors that work into the prognosis of a cancer aside from this, and continuously asking people whether or not their cancer is HPV+ or - and following it up with HPV- cancer having a higher mortality rate means that in a place of comfort and support people who might not have the HPV-virus related cancer will end up feeling even worse.

    I'm sure this is not your intention at all but I wanted to make you aware of how it can come across. I feel it would be akin to people asking others if their tumour is of the aggressive kind or not and then talking about the dangers of the aggressive ones. At the end of the day we're struggling with the same thing, and the unpredictability of cancer means that we don't know what will happen until we're in treatment ourselves. Hope you understand what I mean. Good luck with your treatment (and I'm glad you are HPV+, always nice to read good news).

  • Offline in reply to flexiblestraws
    Hi And sorry.mi totally get what you mean, sincere apologies too wrapped up in my own disease process didn't think carefully enough about what I posted... I have a very aggressive form of basaloid squamous cell carcinoma a rare fraction of the disease and the HPV was my only straw so I got carried away... I'm sorry again.. Paula..x
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    Barb

    welcome to the forum and sorry to hear your news but the good thing is that you have come to this site for advice .... 

    first and foremost I am now 3.5 years post treatment for throat cancer that just popped up one day as a lump in a right neck lymph node. This was defined as a secondary cancer and I then had further scans, exploritories and a PET CT scan to locate the primary .... it was never found and that quite common I hear

    although you have a diagnosis I guess further scans are being performed so that a treatment process can be defined

    Education of the type of cancer is a great leveller as most people associate cancer with the worst outcome, but now days a lot of cancers are survivable

    i was diagnosed on Monday April 28th 12:35 and entered Tomotherapy and chemo treatment on the 8th july, so don’t expect immediate treatment as I gues the medical team need to know a few more things

    once things start to take shape in terms of treatment I would direct this person to this site as there are many things we can help with such as tips on getting through the treatment and loads of other helpful things. But mainly we are here to help and listen

    i wrote a blog all the way through my treatment and will send you the link once you get a bit further along the journey as it might be too much information at this stage

    keep us up to date with how it goes, but it would be great to liaise with them if they felt the need

    vatch

  • Offline in reply to Vatch

    Hi Vatch, were you told to stay away from your pets during radiotherapy?  Paula

  • Offline in reply to paulaw68

    How are you getting on? Have you started treatment yet? I had mri scan today and I’m seeing oncologist on Monday and I’ll find out then what my treatment will be and start date. Are you feeling very tired? Or having and burning sensation in your ear and collar bone area? I seem to suffer with this when lying down . Hope you’re doing okay , I’m still having the occasional meltdown but trying to be brave x

  • Offline in reply to LynneM
    Hi Lynne, yes much the same except for treatment! I get ear pain a lot but yes worse laying down, and I am having a lot of pain eating and drinking... The would in my mouth is much worse than before I am going to send photos to the Dr today try to hurry them along a bit...i am having PET scan tomorrow but not likely to see oncologist for nearly two weeks so congratulations on your prompt pathway... Mine is like wading through treacle, I had a bad day yesterday and the day before was worse because they told me my situation was worse than they originally thought! But hey ho there you go... Feeling better today... Same just day by day... Stay brave... Do you know how to send messages on here privately?... Paula
  • Offline in reply to paulaw68

    Things are moving fairly quick for me which is good , but I’m terrified of every appointment. I had a little meltdown before my mri as I fear it will show something worse , the nurse was lovely and gave me a cuddle, like yourself I I have good days and bad . I’m managing to eat okay for now. I really hope things start to move along soon for you , the waiting is torture and fearing it’s spreading is dominant in my thoughts . I’ll havs a wee look to see you I can private message you xx

  • Offline in reply to LynneM

    I have sent a private message...x

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