I Think I Have Tongue Cancer.

Gavin,

Welcome aboard to the H&N forum, sorry you are hear, but be happy you don’t officially qualify  (that next step is a doozy). 

Sleep tight

Matt

GavinP said:

Biopsy Done

So the biopsy has been done. Surprised how much they've taken.

90% of the original lesion is gone and all of the newer, smaller lesion has been taken away also.

I asked the doctor directly whether it looked like it was anything to worry about and he said he thought it looked like "rubbing" of my tongue against my teeth (which is what I've always thought it was because the lesion shape and size is a direct match for my teeth)

The doctor also said I would get a letter in a couple of weeks with an appointment to review the biopsy findings in six weeks. When I said presumably I would be called in much quicker than that if there was anything sinister, he was pretty adamant it would be an appointment in six weeks.

So far so good. Feeling a lot calmer now its done and out the way and the doctor didn't seem overly concerned (though I guess they are told not to say much)

So now its a matter of waiting it out. I assume if I can get to Friday without being called back, I should be OK?

Gavin,

When I went to my ENT, I asked him to be totally up front, don't pull any punches. He examined me, looked me in the eye and said it was cancer. He didn't know what type but he had seen enough of it to know, The fine needle biopsy came back positive for Squamous Cell Carcinoma within a week. From what you're relaying in your post, your doctor seems to agree with your assessment. 

I know it's difficult to relax when faced with the chance of having cancer. Believe me, I was on a roller coaster ride for several weeks between all the tests and appointments. I read WAY too much and scared the bejeebers out of myself. I can't speak for your doctor but I would have to assume he would le you know if he was overly concerned. 

Good luck and keep us informed as to the results. Here's to getting a negative result and peace of mind

"T"

GavinP said:

Hi all

Just to let you know, still haven't heard anything from the hospital. I'm assuming I'll get a call on Monday if theres cancer.

Will let you know next week.

Ingrid K said:

too long to wait

Gavin

Call the doc's office tomorrow.  It's been too long.  Tell them you want to know the test results NOW so you can put your mind at ease.

I too am a limey Gavin although I live in The US. There is a difference in response time from the US to the UK. I had larynx cancer in 2009, when I went to the ENT to see why I had a sore throat and fading voice he arranged a biopsy 3 days later, I got the result in two days and was in the hospital getting a peg 4 days later and started treatment in three weeks. I suggest that you give your doctor a call and create, also, and this is very important, if there is a delay call the MacMillan organization, that is a managing group of nusres that will push hard for everything, will visit you and see what you need, they often come to your home and arrange things (like steel supports in the bathroom etc) This is all done with no charge, the UK is different than the US as we do not have government run healthcare, at least not yet, I fear it is coming. Take advantage of the help you get in England. Denis

GavinP said:

Still no news

Nothing from the hospital at all. I can't believe they haven't got the results back by now, so I'm beginning to think maybe I'm in the clear.

On the other hand I still feel terrible. I weighed myself today and I've gone from 12 stone to 11 stone in the past month.

Might just be worry and anxiety, but thats a lot of weight to lose in a month.

On the other hand I don't have any pain or swellings in my mouth or neck region. If this is cancer the first place it would spread to would be my neck and throat I think?

Generally I take the view with medical issue that no news is good news, but I can't understand why my overall condition is getting worse and worse (unless its anxiety)

Think I'll give the hospital a call tomorrow. I can't keep going on like this. 

your biopsy comes back negative~~the waiting is the hardest part, I had my biopsy and they didn't book an appointment for results til 3 weeks later..I kept telling my husband, I'm not worried, surly if it's positive they'll call me in earlier...didn't even have my hubs go with me to appontment, I was that sure of good news, alas, it wasn't. BUT, like all the kind, helpful folks on here, I made it through and so will you if worse comes to worse..

GavinP said:

So...

I rang the hospital yesterday and they say the biopsy results still aren't back. Not sure if this is a good or a bad sign to be honest?

Its hard to believe that the pathologist wouldn't have a good idea what he is looking at by this point, IMO....

One way or another there should be a definitive answer next week.

In the meantime theres no new white lesions or patches appearing since the biopsy. And infact the area where they took away the newer piece of leukoplakia which formed around November'ish is looking a lot better with even the scar tissue starting to fade and go back to a relatively pink colour.

It takes no more than an hour to fix a series of H and E slides from a soft tissue biopsy.  It takes less than a minute to read them.  For general purposes, with squamous cancer, you really don't even need a microscope.  You just hold them up to the light.  If they are blue, it's cancer.  If they are pink, it probably isn't.  The slides have long since been read.  It doesn't matter whether you are north or south of the equator.  If the transcriptionist is typing one word per day, perhaps it takes weeks to get a hard copy of  a report.  The system just isn't accomodating you.  Sorry.  That's just the way it is.

best

Pat

corleone said:

The only explanation that

The only explanation that comes to my mind is that besides the usual slide coloration (like the H&E longtermsurvivor mentioned) they are also running some special coloration, including Immunohistochemistry, to pinpoint/confirm the diagnosis. This usually takes 10 days (for economy reasons they are running those in batches, that’s why it takes much longer than it should; also the paraffin inclusion alone takes at least a couple of days)). I agree that a preliminary diagnosis can be made in minutes (like during surgery) but the pathology lab might have to wait for all the results before sending out the final bulletin... In my case the results came back after 10 calendar days (at a Hospital in Toronto).

 

While technically what you say is correct, there isn't a chance in the  world that this situation requires special stains.  And so we don't unnecessary spook an already antsy patient, if  it did, there would still be a provisional diagnosis by now.  And that diagnosis could certainly be shared by the primary physician with the patient.  It isn't as though ten or fourteen days after the biopsy all of a sudden we decide someone has cancer.  To the OP:  all of this discussion is a tempest in a teapot.  The odds of your circumstances resulting in a  cancer diagnosis are small, but not zero.  The lack off communication is a function of your system, and of the uncaring attitudes that system engenders.  It neither suggests, nor refutes the cancer diagnosis.  And frankly, we've seen this kind of delay in Canada as well.

best to you and to the OP

Pat