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I Think I Have Tongue Cancer.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Hello,

First some history.

My name's Gavin and I'm 35 years old.

For about five or six years I've had an area of what I now think is white leukoplakia on the right hand side of my tongue.

Because the outline of the leukoplakia is the same as three very sharp, uneven back teeth myself and my dentist have been putting this down to my tongue rubbing against my teeth.

Recently (can't be sure when, but I would say it would be some time before Christmas, maybe November'ish?) another patch if white leukoplakia appeared again on the right side of my tongue, but away from the first area (which has now become a thickened area) and the right hand sice of my tongue is beginning to feel numb. Other than this, I have never had any pain or irritation from my tongue.

I saw the dentist in January and she noticed the new white area and refered me to a maxilo-facial specialist. I saw him last Monday and tomorrow I'm having a biopsy.

This morning I've discovered a small red spot on my tongue near to the white spots that appeared before Christmas.

In recent weeks I've been feeling increasingly off colour. I am running a low grade temperature. I am suffering alternate bouts of diarrhea and consipation and feel nausous (I put this down to a stomach bug around Christmas) My heart is starting to race quite fast. I don't have any pain or tenderness, though I do notice the occasional feeling of pressure on the the top of my back.

Everything I've seen on the internet suggests that this week I'm going to be dignosed with tongue cancer and given the time delay since the new area of leukoplakia appeared some time last year its very probable that its spread at least to my verterbrae if not to the rest of my body.

I'm scared and frightened and wondering whether there is any way back for me. I'm single and live with my elderly parents (my father had a heat attack last October) I had numerous medical problems when I was young which my parents saw me though but now I think they are too old to cope with yet another medical drama with me.  I'm in blackest hole of my life and can't see any way out at the moment.

Is this survivable if its spread? Can I have any quality of life?

Any advice or words of hope would be much appreciated.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

My best advice to you at the moment is to practice your meditation, and cross no bridges until you have to.  Easy for me to say, I know, but you don't have cancer until it is proven.  The term leukoplakia just means "white patch", it doesn't mean you have cancer.  If you now have two succh spots, ok, but cancer tends to grow from the the first spot, not just to form multiple spots.  There are other things that can cause you situation, including multiple rub spots from your teeth, or benign squamous papillomas.  I hesitate to toss the papilloma of the tongue thing out here on the board, cause now everyone will go internet searching and freak themselves outUndecided    but seriously, it sounds like you are headed in the right direction.  You need to put the issue to rest, benign or malignant.  So try to stay calm, and let's see what the biopsy shows.  No point in crossing this bridge just yet.  And, yes, there is quality of life after treatment for cancer of the oral cavity.  Just ask me, I've been down the road a few times.

 

best to you

 

Pat

Noellesmom
Posts: 1302
Joined: Aug 2010

Gavin, I understand your concerns.  They are valid. 

Please remember, though, it isn't cancer until they say it is.  I'm betting millions of biopsies happen every day that have good results.

You are taking the right steps.  Try to destress as best you can.  Until you have a cancer diagnosis, you are worrying without a purpose.

Ending it before the diagnosis?  No.

Survivable if its spread?  From the posts on this board - yes.

Quality of life?  Again, the posts here indicate that, yes, quality of life is possible.

You need to take a deep breath and calm down.  You don't know anything yet other than you have a cautious doctor.  Good for you.

Let us hear from you.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I am sorry you have to deal with the fear at the moment, howevver I will say if you read the possible side affects of an aspirin bottle it can scare you to death Sealed so too can researching tongue cancer on the Internet (more humor).

Like we always say on this board, "it ain't cancer until they say it is cancer" .....so as easy as this is for me to say, try not to think the worst case scenario.  If by some chance it is cancer, I am 13 months out from my stage III base of tongue cancer diagnosis and I have had clean scans since my treatments ended. I'm out hunting, cutting wood, snowmobiling and doing anything I want with my family.  Had I chosen to not go through treatments I would have certainly been gone by now.  The treatments were the right choice for me, and they become "more right" everyday.

I remember not long ago on this board a person posted they feared they had oral cancer, they spent a couple of weeks with us on the board (which was fine of course) and their biopsy came back benign, no where near cancer related.  We were thrilled for that person and they were certainly thrilled as well.

I'm sure you are a great guy.  So my prayer is your biopsy will leave you bidding us farewell, but it not, stick with our board and you will find a group of folks who really care and can take the journey with you my friend.

Please keep us updated on your biopsy.

I whispered a prayer before I hit post that your biopsy does come back negative for cancer.

 

Best,

Tim

(I rarely get on this board at 6am....but for some reason this am I felt compelled to log in)

 

 

Ladylacy
Posts: 480
Joined: Apr 2012

Just wanted to tell you about one of our neighbors.  He is a survivor (9 years) of H&N cancer and a month ago when he went to his dentist, the dentist found a white spot on his tongue and said he needed a biopsy.  Yes he was worried that the cancer had returned.  He came down to see my husband who is a H&N patient and getting ready to have a needle biopsy tomorrow and then another at the end of the month in his esophagus.  Well he got good news his spot that was removed was not cancer and he told us that it really lifted him up and now he is telling us not to worry because worrying will get you nowhere but heavy stress.

So good luck and until they tell you it's cancer, it's not.

Sharon

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thank you all. :)  You have set my mid at rest a little bit. I've been working myself up day by day since Monday when I found out I was going to need the biopsy.

Generally how long does it take to hear from the hospital if the biopsy shows up malignancy? (I'm in the UK)

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

The micro slides take less than an hour to prepare, and  about thirty seconds to read by the pathologist.  In the cycle of things, a report is generated by the next day.  Now, how that report is transmitted, and to whom, that is variable.  but a day or two should suffice for a diagnosis.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thanks very much. :)

So I should certainly hear something by Tuesday or Wenesday if theres a problem?

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

and ask those questions of the guy doing the biopsy before it is done.  "when will  the results be back, and how may I learn them?" is way better than getting left out in the cold waiting on results.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thanks for tip.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hello Gavin

First:  stay off of the internet.  Except for reading things on THIS discussion board, the info you see on the internet is often misleading, outdated and downright inaccurate.  It will scare the heck out of you... so stop looking !

Two: as others have said, it's not cancer until a biopsy tells you it is.  Since you are already scheduled for one, you are doing the right thing.  If you weren't doing this, my advice would have been to see an ENT to have one done.

Third:  I am the poster child for Tongue Cancer Survivorship !!  I lost 75% of my tongue due to location of my tumor.  I have been thru hell and back, but the treatment is doable.  And I am 20 years older than you, so even though you mention other medical issues, your age will help you bounce back.

So, ask when you will get your biopsy results.  Should take no more than 2 days, so push back if they tell you longer.

Sending prayers that biopsy will be benign.

 

 

phrannie51's picture
phrannie51
Posts: 3719
Joined: Mar 2012

mind at ease, Gavin....GOOD!!  We humans are so good at working ourselves into a lather, actually living and thinking in the future.....a future we have no knowledge of (I am so guilty of doing this exact same thing!!).  One of our favorite says here is as Tim said..."it ain't cancer till somebody in the know says it's cancer".....

As you can see from all the people posting on this board.....oral cancer is not only survivable but people continue on living and working, and taking care of their children....some here have survived it more than one time....so tho quality of life might change a little it certainly isn't a reason to "end it all".  Suicide would most certainly be the most devastating thing you could do to your parents....

You hang tight....the chances are WAY more in your favor of not having cancer....than having it.

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Gavin,

welcome to the community, although for your sake I hope you are just passing through. Nice to meet you either way. 

Everyone here has given you great advice, I just wanted to share my two cents and echo Phrannies thoughts a bit, even if the worst is  tongue cancer, she's right it's not worth ending your life, particularly if doing so for your parents. I have two sons, 28 and 30. Boy did I get a run for my money when it comes to health issues with them, and i was a single parent. i also had a heart attack, 4 years ago.. And never in my life would I want to not be able to see them smile, hug them, or see them succeed at life. Being sick is not a good enough reason, there is no reason great enough.

My husband of two years found out he had tonsil cancer on my birthday, 9 days before my sons wedding, and 16 days before his moms 80 th birthday... She amazes me at how strong she is, and yes, she has tears at times, but she more than anyone wants her son to live a long and happy life. 

So, plan on living.. Plan on showing your parents with a little help you can fight this, but don't dare take their son away from them, you are unique and very special to them.

ok off, the soap box, feel free to say or ask anything here..lots of great people will show you the way of getting through treatment, if you need it and well... Um... I don't rant too often :)

hope your results are benign!

Kari

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

It's already been said many times but....it isn't cancer until the dr says it is.
Leukoplakia is a white callous if you will. Leukoplakia does not mean cancer and also cancer doesn't usually jump from one side of the tongue to the other. That being said, I'm still glad you are getting a biopsy, let's just find out once and for all what this is. Sometimes with biopsies if the dr gets a big enough piece he can ask the pathologist for a frozen biopsy. That would give him a very good idea Right away of what he is dealing with. The rest of the sample would need to go thru the typical biopsy process which would take 24-48 hours but at least you'd have a pretty good idea. As I said tho, he would need to get a big enough sample and sometimes that's not possible. Just a thought.

You really need to do yourself a favor and stay off of the internet. You could find a hang nail to be tongue cancer if you look hard enough. Joking of course but I'm just trying to say that it can really play tricks on your mind and give you undue stress. Not to mention, a lot of stuff is old and out dated.

If you do find out by some small chance that it is cancer, you should know that treatment has proven very successful. There is life after Head and Neck cancer.
No more negative thoughts!!
Stay on this site and feel free to ask us any questions you may have...no question is out of the question.

Billie

P.S. Where are you located if you don't mind me asking...we may have one of our members that are close to you....I'm in Southern California (Los Angeles area)

HobbsDoggy
Posts: 165
Joined: Feb 2013

I also thought when I first thought I had cancer and later found that I did (neck unknow primarty) that maybe just ending it was the best way to go.  I found out on here, from the doctors and got secoend opinions that I have a good shot at a normal long life.  I am very glad I did not do anything rash and got treatment.  I still don't know how it will trun out, but have enough hope that it makes it a very worthwile jorney.  Hang in there and get "real" information from doctors and be your own best advocate.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

You really have helped me today. I was at such a low ebb this morning. I was awake pretty much all night and I got up this morning and just felt so terribly low.

I even managed a few hours sleep this afternoon.

Billie, I'm actually in the UK.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I'm a two and a half year survivor of Stage 4 head neck cancer. My primary tumor was at the base of my tongue, so I received two surgeries and a nasty eight week round of concurrent chemo and radiation.  So far, I'm still fine, and living a normal life.  My co-worker's mother passed away from head neck cancer a number of years ago.  My co-worker's dentist recently spotted a patch on the inside of her mouth, and advised her that she should get it biopsied immediately.  Of course my co-worker panicked, given her past experience with her mother. I took her to the Ear-Nose-Throat specialist who diagnosed me.  After a single glance, he was able to tell her that he was more than 98% certain that her patch was NOT cancer, based on his experience. He biopsied the suspicious area, and had an answer for her by the next day. Negative. Not cancer.  Most mouth patches are scary, and the dentist will advise a biopsy, because that is part of the dentist's oral cancer screening responsibility.  The likelihood that it is cancer is very low.

Sending you best wishes for a quick resolution tomorrow.

Deb

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thanks Deb. :)

It was the small red patch that got me really worried this morning (I'd been reading on the internet that white can be pretty much anything, but red with white means your in trouble) So imagine what it was like when I got up this morning after all these dark thoughts had been racing through my mind all night, and I looked in the mirror as as I brushed my teeth and noticed a red spot had appeared.

(no more have appeared today BTW and I'm trying to keep the amount of times I look at my tongue down to three times a day, as I was becoming like an OCD with me to stand in front of the mirror and stare at it LOL)

One other symptom I didn't mention, BTW, but one thats becoming increasingly apparent, is that my saliva is getting more and more thick and phlegmy. I've got this horrible phlegmy taste in my mouth all the time. Its almost like I've got an infection in my nose or the back of my throat? Is that something that can go with tongue cancer? Oy maybe its just because my body is so out of sorts due to anxiety and worry?)

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Thick saliva suggests some kind of an infection. to me. Many of us here have thick saliva, or no saliva, as a side effect of the burns from radiation treatments. I don't believe a single one of us had that symptom at the time of diagnosis.  Just keep taking deep breaths, and try to remain calm. All is well, and you will have your answers very soon.

Deb

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thanks Deb. :)

Off to get some sleep now. It least tomorrow is the start of getting all this resolved one way or another.

Thanks everyone.  Hope you guys don't mind having a "limey" in your midst? 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My hope is that you'll get some good rest tonight and start tomorrow with a clear mind. It's not cancer until they say it is and chances are they won't say that it is.
Do keep us posted as you've just become part of our family and we care and want to be here for you. Oh and I think we have a few others in the UK so if needed I'm sure you can get some referrals.
Billie

CivilMatt's picture
CivilMatt
Posts: 2954
Joined: May 2012

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's picture
GavinP
Posts: 80
Joined: Feb 2013

Had a good nights sleep (over 6 hours - The best I've had in days) and off for the biopsy in a moment.

Will I be in much pain when the anesthetic wears off?

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

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?

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

Could have guessed you were in the UK from this response.  He will have the answer, just doesn't want to be bothered.  Glad you did well.  Here's to a favorable report.

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

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"

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Gavin,

a little waiting isn't bad, annoying but not bad. Glad to hear the doctor wasn't too excited about the biopsies, I imagine they would have a different response if they really thought it was too serious. 

And with most here, their cancers came with neck involvement before they had a clue, so hopefully that's just another positive sign for you.

glad to hear you had a not so bad day!

Keep us posted and hope your worries are just that.

Kari

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Hi all,

Just want to ask a few questions about my biopsy after effects?

I'm noticeing that today I'm feeling terrible. Very shaky, light headed, rapid pulse, shivery etc... My tongue has gone a bright shade of yellow. Could these be after effects of the biopsy?

Also, I'm feeling as though I'm not swollowing properly cause I can't chew my food properly. Again, is this something thats common after a tongue biopsy? My biopsy was on the right lateral side so every time I try to munch up my food, the biopsy site is rubbing against my tongue.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I don't know the answer to your post prvious to my response ...but I will say I would "throw the yellow flag" on six weeks!!!! :)  I realize you are in the UK, but seriously.  Give them a polite call this coming Monday and tell them six weeks will take 10 years off your life :) and just flat out ask for an answer quickly.  Be nice of course, you get more with sugar than salt.

Best to you Gavin...

 

Tim

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Hi Tim,

I think the six weeks thing applies to whether the biopsy comes back with a routine result (harmless white patches caused by friction with my teeth, for example)

Should be biopsy come back with cancer, I just can't believe they wouldn't have me in hospital for MRI's etc... Next week at the latest. It was a very quick process from being refered by the dentist to having the biopsy (one month) So I'm sure I'll hear something this week or early next week should cancer be found in the biopsy (which is what I'm mentally prepared for)

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

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.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Just try and relax, I know it's not easy but try and relax and enjoy the weekend. I still have positive attitude and a good feeling about your results.
Billie

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

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.

denistd's picture
denistd
Posts: 497
Joined: Apr 2009

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's picture
GavinP
Posts: 80
Joined: Feb 2013

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. 

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

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's picture
GavinP
Posts: 80
Joined: Feb 2013

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.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

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's picture
corleone
Posts: 161
Joined: Jul 2012

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).

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

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

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Gavin

you have a LOT more patience than I would have.  I would be burning up the phone lines, and might have even paid them an inperson visit by now.

There is no good reason to add to a patient's anxiety by making the wait so much longer than it has to be.

Good Luck and hopefully you will hear something soon.

 

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Thanks all for your on going concern, advice and tips.

Overall I am feeling relatively calm now. Many of the symptoms I had when I first started posting here have eased. I've even started putting weight back on in the past couple of days. I'm convinced most of my symptoms were down to anxiety and stress.

Looking back now I'm just astonished at the way I worked myself up during the weekend before the biopsy. I can't believe that was actually me that wrote that original post. :O

I'm fairly relaxed now. If I have cancer I will hear no later than next week so for now I'm happy to wait and enjoy one final "pre cancer" weekend with my mum and dad.

I guess theres also an aspect of "ignorance is bliss" going on. I don't want to have to face the reality of cancer until I have to and I certainly don't want my parents to have to face that reality until they have to. So a couple more days won't make much difference.

All will revealed one way or another soon enough...

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

You are much more patient than I am. I'm certain the results are ready and have been ready for quite some time! The hold up is probably do to transcription of the pathologists findings, cancer or not. Your doctors office would be able to get those results over the phone for you. I know here in my area the pathologists nor the hospital will directly give me results but the ordering doctors office can get those for me.
I realize you are ok with waiting but I'd demand some answers based on principal alone.
Even if you say you are ok with waiting, this delay must be making you a little bit crazy.
Have a great weekend,
Billie

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

I guess I'm used to how the NHS works, so delays are not a surprise. ;)

One thing I've not said is that I'm amazed just how bad my tongue had been feeling (with the original lesion) Because it had slowly creapt up on me over five years or more I hadn't realised how bad it had got in terms of numbness and feeling weirdly leathery.

Now that much of the thickened area has been taken away it just feels like normal tongue again and clearly how it was before had become very abnormal.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

And still no news from the hospital (thats the NHS for you - They really do think they can leave you hanging around for weeks waiting to find out whether or not you have cancer)

I'm taking it as a good sign that I've heard nothing (my radiologist friend thinks I have nothing to worry about now) but of course, theres still that nagging doubt in my mind.

I think I'm going to ring the hospital on Monday (will be three weeks since the biopsy) if no copy of the results turns up in Monday's post.

Meantime, I continue to feel well, have gained weight, look much better and am getting on with my life a lot better. No new areas of leukoplakia have appeared, which I'm also taking as a good sign.

Will let you all know when I have news.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I have to say, you have more patience than anyone I know. The ENT I went to initially examined me, looked me in the eye and said it was cancer. He didn't know what type but he had seen enough to know it was. I had a fine needle bipsiy done to confirm and diagnose on November 21st of last year. I had my results by the 30th. During those 9 days I was a wreck! My appointment would have been sooner if not for the Thanksgiving holiday. I know I would have been at the lab personally if I had to wait more than I did.

I don't know how you've gone 3 weeks without breaking the walls down at the lab! Sure hope you get the news and it's positive. I think you're right though, by now, if it was serious, you would have heard something. Good luck with everything. Let us know when you find out.

"T"

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

I don't think I'm a particularly patient person, I'm just used to the snails pace that the NHS runs at.

I've had lots of paperwork over the last few weeks. Appointments. Confirmation of appointments. Cancealled and remade appointments. A copy of a letter from the doctor I saw on initial assesment to my dentist (interestingly the doctors initial diagnosis was two humogenous areas of leukoplakia without any obvious lymphatic swelling) However, the one thing I havent had is the one thing I actually want - To know whether I have cancer or not!

You can see why the UK has such abysmal cancer survival rates compared to the rest of the western world can't you?

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Hi all,

Sorry I've been away for such a long time. I lost my internet connection for a while.

Anyway, I got my answer to the biopsy results and I don't have cancer at the moment.

However, I do have homogenous, idiopathic, leukplakia with cell abnormailty that could lead to cancerous potential. I'm going to have laser surgery on April 30th to remove the patch and the doctor is hopeful this should resolve the problem.

Overall I don't think its too bad an outcome?

Thanks for all you help, advice, time and patience. When I read some of threads on here I feel kind of ashamed at myself now for the state I worked myself in to given that I don't even have cancer, but you guys certainly made this whole process easier for me to deal with and for that I'll always be eternally grateful.

I'll keep you updated on my progress, if thats OK.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

news, always happy when cancer is not found, please keep us up-dated. Happy Easter

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so glad you got those results...I've been thinking about you and wondering how you are. The laser should do the trick nicely. Please let us know how that goes and stay in touch with us.
Take good care!
Billie

phrannie51's picture
phrannie51
Posts: 3719
Joined: Mar 2012

NO cancer....you can't beat that for news.  Don't feel bad that you got yourself wound up....it's a very scary thing....and then you had to sit on it forever while they analyzed your biopsies.....waiting always makes me wind tighter.

p

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