Tongue cancer 1 op so far and been beaten up

Hi all,

Firstly, I am not out of the woods and the squamous cell carcinoma of the tongue could reach out and plonk itself at any time.

I could be a walking time-bomb?

I say this because it is true and because I do feel for anyone who's suffering or anxious due to any illness whether it be yourself or your loved ones and my lott may seem trivial and appear to be hot air.

I'm only going to write a brief account of what I have experienced up to press since I got diagnosed 11 weeks ago, (T2 N0 M0) squamous cell carcinoma HPV.

I had a third of my tongue removed 14 days ago, 1cm

3D clearance.....I enquired at the last moment to the Consultant regards maybe not to have the neck dissection as I believed the T2 lesion had shrunk a lot during the 9-week wait up to the op.  The Consultant and the Anaethetist quickly agreed to this change of mind, giving the fact they couldn't find the lesion because the previously visible lesion had now GONE!

There was still some rough-to-the-touch thingy underneath though, and I pointed to where it could be found and they drew an ink arrow on my neck.

Operation went fine, was discharged 30hrs later and had a big hemhorrage when I got home.  I thought I was losing my entire tongue.  I caught it all on video in case I died.

Fast forward 2 weeks.....I then went to an appointment with a Consultant for the results of the microscopic examination/report from the resected tongue tissue, grade? Exact type & category sub-type? Differentiation? Aggressiveness? Slow growing? Rapid growing? HPV16? 18? 11?

Margins 1mm? 3mm? 5mm?  Extreme edges?

Has lesion reached perinial nerves, lymph duct channels or capillaries?

The info given at the meeting was; "They've found nothing".

"And it's not HPV and NHS don't test for HPV".

"Follow-up's to be done every 4 months ultrasound".

And that was that!!

But I'd been told at diagnosis day that it was HPV and I was told "You've got this cancer from giving oral sex".

And I was told that "millions of folk has the HPV and that it's rife", adding, "some people unfortunately it can turn to cancer".  This chap also told me "it's the best one to get coz it has a better prognosis than the other one".

This same chap then said "It's probably gone to your LUNGS".  I was in cuckoo land!  I said OMG what are you saying? which he replied, "this type of cancer goes to your lungs first, I've seen it all before", adding, "you wouldn't know anything about it".

I was given a couple of books and maps and names and numbers for chemo and radiotherapy hospitals and emergency numbers for feeding tube problems, even maps to St James' (where I've known people who've ended up there!

Devastated, I went home.  I'd had no symptoms and was unaware of the lesion, it was the dentist who'd referred me back in middle of May.

All MRI and CT scans returned clear.

I believe the lesion had been caused by a habit I'd had for 18 months, reaching across with my tongue and checking out the lost filling hole in the upper last molar, then checking it out with the tip of the tongue for another year after I'd filled it with a temporary filling seeing 2 dentists appointments had been cancelled by the Dentist before the covid pandemic closed them for ANOTHER YEAR.

The tongue had been rubbing on a bottom molar every time I did this habit and had been rubbing exactly where the lesion formed.  I didn't realise it had been rubbing until afte the biopsy when it was healing up and when I did that habit it was the only place on the tongue that hurt.

I did try to explain this to the professionals but I did accept I had cancer and wasn't delusional. They told me the cancer can arise from a cut or from ill-fitting dentures etc.

I was then told later (by the same chap) that I'm

having "BOTH sides of neck lymph nodes removal".

I was ready to walk away there and then and decided just to die.

Another professional in the room then checked her laptop and confirmed with me that it was just ONE side of neck to be done, as planned.

The chap had been looking at another person's record (who happens to be a female with a very girly name).

How could he do this?

I also repeatedly enquired about sentinal nodes biopsy but was always told "no, they only do that on enlarged nodes"......until today when I was told "yes they can do this and I can refer you right now to London".

I still may ask kindly for the neck dissection but only when I've found out the results of all of the tests that have been done on the removed clump of tissue that has been removed from my tongue.  And yes it is a suffering 2 weeks and this has been the best day and no pain killers today.

These MAJOR RESULTS from the lab cannot be put simply as; "They've found nothing".

I know there has to be more to it than that!

So this is the end of treatment? Apart from periodic check-up's?

Obviously I hope that's the case but from what I've learned over the past 3 months regarding folk who are really going through it, this just cannot be correct, it's too rash, too abrupt, cannot be like this!

I'm not after complaining; what good will that do!

Just wanting results so can then make decision.

CozzyCozzy

 

Now I find after the op that it's "not HPV and that the tumor has now been downgraded to a T1".

  • Hi and welcome to our community.

    Your post has left me at a loss?

    You say they (the histopathologist doing the biopsy?) found nothing? No Cancer in your tongue?

    You're right in that the NHS don't test for HPV...they stain for P16 which is a surrogate marker for HPV SCC but they might mean that if your cancer was in the oral part of your tongue (Not at the back where the tongue tonsils are) they don't test because cancer in this part is never HPV positive. Maybe you can ask?

    The oral sex bit is unfortunate. Some clinicians seem to be unable to explain this properly. It isn't  the the only way to acquire HPV infection, anyway, and patients should have this explained to them.

    If there is cancer and they have achieved clear margins then you won't need any further treatment, just monitoring for the standard five years.

    We all live with the threat of recurrence but the chance of it recedes as time goes by. Most are within the first year.

    Maybe you could get a copy of your notes

    I agree it is all very worrying and you seem to have been led a bit of a merry dance

  • Hi and thsnk you.

    For me to be clearer:

    When I was diagnosed after the biopsy on 15th May, it was said it is squamous cell carcinoma and that it is HPV related.

    When I then went 1-on-1 in a private room with one of the guys from the original big 'busy room', I asked about this HP thing.  I could only remember the HP (from HP sauce).....he taught me about it.   He said what I've explained in my previous post, but he explained that it was cervical cancer, but in the mouth.

    And told me its the same name (SCC) as with cervical cancer in women.

    The lesion was on the lateral tongue, underneath but close to the side.

    I had blood tests, CT scan to head and neck with contrast to highlight nodes and stuff.

    A full body MRI scan.

    A CT scan on my chest.

    Then I was told they are suspicious of something just seen on top of kidneys so sent me for a renal CT scan.

    I waited 2 weeks to ask for the renal scan results but no-one got back.

    Yesterday we had to ASK at the end about the renal scan and he said there's nothing wrong.

    I had that scan 6 weeks ago and been worrying about that too, all that TIME.

    Regards , "they've found nowt" re the tumor & margins removal, me and my helper still don't know if he means they've found nothing at all anywhere? or nothing beyond the tumor?

    I dont even know the grade?  Fast? Slow? How it's behaving?

    What it would have done if it had been left?

    How deep was it?

    If it has crossed important areas such as lymph ducts, capillary, or perinial nerve?

    How much had it shrunk?

    Yea its gone from a T2 to a T1 posthumously but I knew that anyway before the op coz it was withered and dead and was disapearing daily.

    He hasn't said it's achieved clear margins, he hasnt mentioned margins (cos I asked about that).

    He just said "they've found nothing".

    My sister was crying outside coz the chap said he's had "patients from 10yrs ago who he thought would live for 10 years but they were dead within 3 months".

    And that he's "had patients from 10yrs ago who he thought would only last for 3 months yet they're still around today".

    I believe he should not be saying these things.

    And yes you are right re the HPV. I've lesrned a lot this past 3 months and you can catch it lots of different ways, but yesterday I've now been told that the cancer is NOT HPV related.

    Every meeting something new and odd has happened.  My helper has been to all but the first one so she's witnessed most of the fiasco.

    She got rollocked last time in front of 4 other people when she referred to the thing I had as a 'tumor" and was told "it's not a tumor".

    My helper said; ok, the lesion I meant".

    And was told "it's not a lesion".

    We've been told several times that "no-one does senital nodes biopsies" (this is because I didn't believe I had cancer edpecially coz of the time that had passed and not been to the dentist for years to have it discoverer and fact that it was shrinking & disappearing).

     Too late now, my tongue had gone and bang goes my professional singing & entertaining.  I'll manage to do my sales job though before not too long.

    I am a straight forward person and am very good at taking knocks on the chin but they've driven me to distraction and cannot sleep!!

    A lot has gone on.

    And they've more or less wrung me out to try 'find' something and they've found nothing!!

    He's even said, "they're not saying there's no cancer in the resected tissue, they're just saying that they've found nothing".

    All they've done since day one is to TERRORISE.

    The biopsy people were very good though.

    On the 'diagnosis day' there were loads of professionals there including students and a Chinese Doctor felt my neck and shoulders for signs of enlarged lymph nodes, finished, walked across the room to his chair, he sat down and just continued to stare at me!!

    He didn't say ANYTHING regarding if he'd felt something or not!

    That had been THEEE worst experience througout all of this.

    Taks of having to extract all of my teeth.

    Talks of cutting open jaw bones.

    Talks of radiotherapy and chemo and the nasty effects that come with it.

    Given a folder and loads of information day 1.

    Talks about flaps, talks about reconstruction.

    Talks on survival rates/statistics.

    Talks of 10hr operations going into midnight.

    Talks on wind pipes and feeding tubes and all of the names & addresses and maps given, day 1.

    This is ALL WRONG!!

    Very nasty.

    They don't act this way when someone's got another disease other than cancer!

    I don't know how to get the records, the papers, results etc.

    I need them to be in the hands of a Medical Professional, then decide from there.

    Found out yesterday that folk DO have the senital lymph nodes biopsies and finally a squeezed-out correct answer!

    It's taken eleven weeks to

    get that truth out.

    I've had no speech therapist and no dietitian either!  I did meet them 5 weeks ago but all I got was, "don't eat granulated sugar".

    That's all the advice I've been given.  So I've been having honey on my weetsbix.  Still have to be on a sloppy diet for 2 more weeks.  I've been in agony, I live alone, it's been hard.  My sister helps but she lives in a different town.

    I don't want my mates to know of anything and my girlfriend is in Dewsbury Hospital and has been there for the previous month.

    Regards

    Cozzy1

  • Cozzy,

    This is awful to hear. It sounds so unlike the experience I have had. Yes, bad news was delivered but always with compassion. They do have to tell you all the worst outcomes, which can be mind-blowing, especially at your first appointment. I too came away with armfuls of information from the  first appointment after my biopsy had confirmed cancer. I found this useful to make sense of it all in the quiet and in my own time. This seems to have been ham-fisted with the empathy  missing in your case. Sadly, that can lead to more confusion and apprehension. 

    My CT scan covered chest too. My cancer was found in tonsil, but they were checking lymph glands at top of chest not affected and the RT took in that area as a precaution. 

    Can your GP refer you elsewhere for another opinion? Hope you manage to get some clarity from someone. 

    Ronnie 

  • You have certainly had a lot of contradictory information thrown at you, which is confusing and upsetting. I’m sorry you have not received more coherent and supportive advice.

    But the essentials seem to boil down to the following:

    Was the original lesion biopsied and confirmed as a SCC cancer?

    From your account the answer appears to be Yes, and they would presumably not have proceeded to full surgery without knowing cancer was present.

    Second question: Was the cancer fully excised without need for further treatment?

    From your account the answer appears to be Yes.

    Which makes the third question: Will you have follow-up checks to ensure no recurrence.

    Again the answer appears to be Yes.

    Since these are three key questions you should ask again if any of the answers were not clear.

    Your hospital should send letters to your GP informing them of your diagnosis, treatment and planned follow up. If these have not been automatically copied to you, perhaps ask either the hospital or GP for copies so you get the summary on record.

    I’ve kept my copies of hospital letters to my GP so I can go back and re-read them for a clear picture of what I had and how it was treated and what the outcome was if I need to.