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Is it normal for a cancerous legion under the tongue to go away after having a biopsy?
I had a biopsy 2 weeks ago on a tongue lesion then was called in 3 days later and was diagnosed with squamous cell tongue cancer. I've since had teeth x-ray, been for neck & head MRI and am going today for a CT Scan then in 1 weekl I've an appointment to find out if it's spread.
After the biopsy stitches dissolved, the same lesion was there, (an oval shaped red sore with tissue missing and with white edges).
I noticed daily that the lesion was fading/shrinking.
7 days on, it has gone! and there's no irritation in that place either. Is this normal to happen?
Just a note to say i've had no other of the list of possible symptoms related with this type of oral cancer, just the lesion.
Thanks for getting in touch with us and welcome to our Online Community, I hope you find it supportive.
That’s great to hear you’re healing well after your surgery. After being told the lesion on your tongue was cancer and then to notice it shrinking, it’s completely understandable to ask if this is normal.
It all depends on how big the lesion was and how much tissue the surgeon took during the biopsy. This will be sent to the laboratory where a pathologist will inspect it further to let your hospital team know the type and grade of the cancer. The most common type of tongue cancer is squamous cell carcinoma (SCC).
If the lesion was small the surgeon may have been able to remove the whole lesion at the time of the biopsy. The only way to know for sure is for the pathologist to check for clear margins.
As you mentioned, the CT scan will let your hospital team know if the cancer has spread anywhere else. All of this information helps them decided which treatment is the best one for you in your individual situation.
It would be a good idea to speak with your hospital and let them know the lesion is shrinking in size. This will give you the opportunity to ask if the surgeon was able to remove the whole lesion at the time of your initial surgery.
I hope this information is helpful, but if there’s anything else we can help you with please don’t hesitate to get back in touch.
Take care and warm wishes,
Sarah (cancer information nurse specialist)
Hi Thanks for your reply.
I don't think I explained properly. I have been diagnosed with the cancer you described. The lesion was about 1cm before the biopsy and no, the lesion wasn't removed during the surgery.
After the stitches fell out (after 1 week), the lesion was exactly the same as it was before the biopsy and the same as how it was before the dentist.
But now it has gone. It faded daily, now it has gone away.
So how can this be?
Thank you for getting back in touch with us. We’re sorry for the delay in our response. I hope that by now you have received the results of your scans and have more information about treatment.
I hope you have also had the chance to speak to your consultant about the change you have noticed in the lesion following your biopsy. For a lesion to fade and then seem to disappear after a biopsy would be unusual.
Even without the lesion being visible it was confirmed to be a squamous cell carcinoma so this may indicate the likely need for further treatment.
Please feel free to get back in touch with us if you have any other questions or queries.
All the best
Cancer information nurse
Hi again and thanks for your replies.
The lesion continued to shrink until it came to the point that the Consultant and the Anaethetist couldn't see it just before my operation to remove a third of my tongue, that was 2 weeks ago.
After the op I then went to see the original Consultant who'd diagnosed at the beginning and he said after they'd examined the resection tissue it had now changed from a T2 down to a T1 (although by this time the lesion had been removed).
I asked if they'd sent him the various test results from the microscopic analysis and he said, "Yes, they've found nothing".
And that's the end of treatment, (although he still advises to have a LHS neck dissection done).
I'd LOVE to be able to have a copy of the results of all of the tests with the removed tissue so I can take it to an expert then make a decision on either neck dissection or sentinal node biopsies or to do nothing at all and to just go for the suggested 4-monthly check-ups?
I was told at the beginning that the squamous cell carcinoma was HPV-related and that "you've got this cancer due to giving oral sex". I was mega confused and shocked.
I was then told, "it's probably gone to your lungs", adding; "I've seen all this before".
I was now in cuckoo land.
All my MRI and CT scans came back clear, including lymph nodes.
And during the following 9 weeks up to the operation I still had no symptoms and the lesion was disappearing day by day, hence the post-operative demotion to a T1.
"They've found nothing" (quote)....surely cannot be a result of such an intricate and detailed series of tests/results on the resected tissue?
I feel lost and empty and confused and all I ask of folk is to be straight and honest as I do to others.
At one stage I was told by one of the MDT that i'm now to have BOTH sides of my neck cut open.
It took 5 minutes of hell for another professional in the same room to correct this and reassured the dissection was going to be just the one side of the neck as previously stated.
The person was looking at a female patient's record/care plan yet thought it was me, and I'm male.
Lots more things have gone on and I feel frightened, confused and depressed.
This must be also happening to other people and I don't know what to do.
Thank you for listening.
Thanks for getting back in touch. No wonder you’re confused. You’ve provided us with lots of information and I’m struggling to get my head around it.
To describe what was removed from your tongue as T1, indicates a tumour was removed and its size. Then to say the post-operative pathology found nothing is utterly confusing.
Coping with a diagnosis of cancer and its treatment is hard enough without the changing information and picture you’ve been faced with.
It sounds like you have concerns about how your care has been handled and I can appreciate why. If you haven’t talked to your consultant or nurse specialist (if you have one) about your experience and worries, we’d encourage you to do this. This might allow them to explain what’s happened and why.
Yes, you can ask for a copy of your results and asking to be copied into any future correspondence may be helpful. You may need to make a formal request through the records manager or patient services manager at the hospital you attend for your records.
I understand you want to explore the options around having the neck dissection or not. Most patients who have a resectable (able to be removed by surgery) oral tumour are recommended to have this. This is because it’s been shown to improve overall survival (OS), disease-free survival and provide accurate pathologic staging.
As your situation is unusual with a shrinking lesion before any treatment and nothing shown on post-operative pathology, you need to feel fully confident that any further treatment is needed and warranted.
You could consider getting a second opinion that would allow you to speak to another consultant. Your medical records would be sent to this consultant for their review, opinion and recommendations. This could provide reassurance about your current treatment or may offer different options. Your GP or current consultant can refer you for this.
It’s important that you feel reassured about the treatment you’ve had and any further treatment that may be recommended. Otherwise you’ll always wonder and second guess what’s been done.
And if there are things that could or should have been done differently, it’s important for the hospital team to understand what happened and why. Hopefully this means that someone else won’t have the same experience.
Sometimes it can help to talk things through with us over the phone. It can give us a chance to explore what’s happened in more detail and for you to get out of your head what’s been going through it. If you think it would help, we’re available 7 days a week from 8am to 8pm on 0808 808 0000. You can also get back in touch here.
Keep doing what you’re doing and don’t hesitate to get back in touch.
Best wishes, Karla (Macmillan Cancer Information Nurse).
Thanks for that info Karia
The latest; is they are going to make an appointment for 4 month’s time and then 4 months after that, ongoing check-up appointments.
I have today contacted the proper department for releasing patient’s data and received an auto-reply.
I probably won’t be able to decipher the lingo though.
But a statement from a Consultant saying; “They’ve found nothing” cannot be called ‘results’ or ‘results details‘. These three words are all I have to go on.
What I didn’t say in my previous post is that I sent text messages to one member of the MDT, not as harassment, the messages were sent all at the same time. My messages were all truthful but I regret doing this and I should have written a letter to the person and in a better fashion.
I wrote the text messages because I could not bear to listen to that person again because this person has told untruths since the beginning and believe you me they are absolutely horrendous, and my helper has been there every time bar one and has witnessed it and is aghast and frightened like I am.
On one visit this member said “the squamous cell carcinoma is HPV-related and that I’ve got the cancer by giving oral sex”. I find out today that the cancer is now NOT HPV-related! The same person tells me and my helper and 2 other professionals that I am now to have neck dissections on BOTH sides of my neck. At that moment I was just going to walk out and have no treatment and accept that I was going to die soon and in a nasty way.
5 mins later the speech therapist assured me via her laptop that it was going to be the selective nodes removal just the LHS as the Consultant letter says.
I sent an apology to the member and assuring it won’t happen again and mentioning I want no more contact, but I have now been sent to a different town and a different Hospital.
I had already chosen the new town and Hospital 2 weeks ago when offered the option, and wasn’t expecting an appointment with the previous Consultant but evidently wanted to see me one last time, today.
The Consultant at the new Hospital said he’d arrange for 3-weekly regular check-up’s but when I went to the original Consultant today, he signed me off his books and to the care of another Hospital and has put in place 4-monthly check-up’s. This is such a massive difference to the said 3-weekly.
Meanwhile, he didn’t bother to feel for hardened or enlarged lymph nodes at the appointment and was clearly angry with me; although we have agreed to draw a line under it.
No-one else has contacted me since the op nor has anyone contacted me for one month before the op, but.....
I have learned on the internet how to self-check for lymph node changes.Regards ideas for soft diet, the internet has been a godsend. Regards speech therapy, I think I’ll be able to train myself once the tongue settles down and heals.I hemhorraged badly one night and I thought I was losing the entire tongue, really did!I somehow managed to get the episode on video from start to finish.
Hi Cozzy1 thanks for your post I’m glad you found Karla ‘s reply helpful.
I agree with Karla this seem a very complicated case and find a lot of the information I have read puzzling.
Have you considered asking for a second opinion? I know you have been transferred to a different hospital under a different consultant.
Seeing this new consultant would be like a second opinion of sorts. The new consultant may be able to review and explain the complexities of your case and hopefully decide the best way forward. Also ask the new consultant if it would be possible for them to carry out a full review of your case including your concerns about your lymph nodes etc.
Also, if you are concerned with the change in follow up frequency it may also be worthwhile to contacting the consultant’s secretary to see if this can be changed back to the agreed review period.
There is an organisation called Pals or POhWER that may be helpful in giving you closure and getting the answers you are looking for.
With what you have been going through, the way this must have affected you emotionally as well as physically, I can only begin to understand. In a situation like this it would be difficult for anyone to keep their composure and I respect the way you have manged this situation . You won’t be the first to react to a situation in the way you did and certainly won’t be the last.
Health professionals have thick skins and shouldn’t take anything personally. Even though by the sounds of things, things may have been handled better. But no one is perfect .So probably the best thing to do is draw a line in the sand and move forward, your health and well being comes first .Once this has been done you can then decide what closure /feedback you want to achieve for yourself at that point .
I hope this hasn’t stopped you from accepting help from other health professionals .You mentioned about self-checking your lymph nodes and speech and language, which is good but please don’t let your experience deter you from being reviewed by other health professionals such as speech and language because this can be very useful after oral surgery on many fronts as well a dietary advice.
If you think it may help to discuss things further and how you are feeling right now. Why not give us a call ?
Hi Keith and what a fantasic response you've given. You understand so much and I appreciate it.
I am actually threequarters through putting the info together for PALS, and I have been told from a lady at a 'data patient's relations' dept that the PALS are running behind and they're having problems transferring the UK's data to a new platform and said it could take weeks.
She's advised me to write to the hospital that did the biopsy and regarding my previous Consultant & MDT there.
My biopsy is at one hospital and my tongue-part is at another hospital.
I need to put everything into detail since 6th May and to request immediately copies of the Pathologist's reports and findings from the biopsy and from the resected tongue tissue post-op. This is what I'm doing at the moment.
This is all I need at present,
Regards any Nurse or anyone from the MDT including dietitian and speech I did have a meeting with them 5 weeks before the op, it is now 17 days since my op and nobody has contacted me.
The hemmhorrage that happened at home the day after the op is like something out of a horror movie and I have it on film. Watched it only once.
I wasn't eating, drinking or talking at the time it happened. It is something I will never forget.
I opted for another Consultant and (Im guessing) MDT when I was given that option 1 day after my op on 19th July and I jumped at it. The new Consultant marked that onto the computer and I should not have been sent back to the previous Consultant, but I went ONLY to find out the results, and he would NOT give them to us.
This has now plonked us into nomansland.
Yes you are right, this has affected my mental health but my text messages to one of the MDT are not that bad, no swear words and just the truth.
I missed out a couple of things in the messages, such as when I was told on the diagnosis day, "The cancer has likely gone straight to your lungs", adding, "I've seen all of this before".
And, "You have got this cancer from giving oral sex", "It is the HPV same as cervical cancer but on your tongue".
Then I was given a turorial on the human papillomavirus rife within the population and was told the "HPV related cancers have a better outcome and need less of a course/dosage of radiation".Etc Etc......
It was ALL about HPV.
Then I'm told in a bombshell 11 weeks later (after the op) that it's "NOT a HPV cancer". OMG. Cuckoo Land.
I now don't know what it is and it will not be told what it is.
I've just sent a letter to my GP asking if he can bring forward ASAP an appointment to see my new Consultant at the 'new' hospital to have the results and opinions on any further treatment such as neck dissection or senital nodes option, or indeed to do nothing.
I hope it's "To do nothing", but the previous Consultant has stated I have refused the neck dissection, but I never have done!
I put it "To" the Consultant & his Assistant just before the op and they instantly agreed (seeing they couldn't actually SEE a lesion even with me pointing; it was still rough-to-feel in that spot underneath but was withering and I believe now dead.
Hence why it went from a T2 to a T1 spontaneously.
Literally, all I have regarding any examinations/tests/results is;
"They've found nothing",
and that is definitely not good enough!
My helper & I tried to ask detailed questions in layman's style but the repeated answers were, "Oh I don't want to get into that it's too complicated".
Same response when I told the Consultant it was HPV and that how come I'd been TOLD I'd ended up with this cancer from giving oral sex coz of the HPV status?
If the GP doesn't or cannot sort out a quick appointment I will phone the new Consultant's secretary as you suggest, but I don't want to be a burden upon the new people.
I've started at the GP because I guessed it is the right way? I don't know!!
I wanted to be a "Perfect Patient" (just like was said at the biopsy back in May).
I have gone along with everything and have listened to the professionals BUT I've repeatedly, shockingly been told the wrong things since day one.
I've ended up responding just the one 30 min period with texts to an individual, not sent to anyone else! And telling that grave incompetent disgraceful evil person that I don't want to lliase with that individual hereon.
Thank you for getting back in touch. I am glad that you have found Keith’s reply helpful.
It sounds like you have a good action plan in place to take the next step with your new Consultant.
I’m sorry to hear that you haven’t heard from anyone about a follow up appointment after your surgery. From your previous contact, if I have understood this correctly, you are no longer under the care of your original consultant and your care will officially be taken over by the new consultant.
If you would like to bring your new appointment forward it would be best to contact the new consultant’s secretary as they are best placed to help with appointments. I can appreciate that you don’t want to be a burden, rest assured that you won’t be as they are best placed to support you.
I do hope that you have better care under your new consultant. It sounds like it’s been such a difficult time for you.
I’m not sure what support you have around you. I would like to invite to call our support line. We are more than happy to chat things through with you. We are open 7 days a week from 8am to 8pm.
Take care of yourself and please don’t hesitate to get back in touch if there is anything else, we can support you with.
Hello and I really do appreciate the replies.
Please excuse my use of CAPS it is just for empasis and is not shouting.
I sometimes do NOT explain things properly and then everything gets jumbled up wrong. It is MY fault and I apologize and I will try to be a lot clearer here.......
But, please can an expert answer the following questions and I will greatly appreciate it.
The lesion (squamous cell carcinoma of the tongue) has now been removed by surgery and with 1cm margins resected all around the lesion. It had 11 weeks earlier been tested at biopsy and had come back p16 positive.
So it was presumed to be "HPV-related SCC" and I was taught a lot, of what the HPV is and it's relevance and I was told the following at the Maxillo Ward:
"YOU HAVE GOT THIS CANCER FROM GIVING ORAL SEX".
"YOU HAVE GOT CERVICAL CANCER, ALBEIT IT'S ON YOUR TONGUE COZ OF COURSE U DON'T HAVE A CERVIX". "BUT THAT'S WHAT THIS IS".
"AND IT'S PROBABLY ALREADY SPREAD TO YOUR LUNGS, I'VE SEEN ALL THIS BEFORE".
The lesion is NOT beyond the tonsils, it is NOT throat cancer.
I know it is very relevant to WHERE ABOUTS on the tongue folk's lesions pop up.
It was towards the back of tongue that u can see WITHOUT having to stick your tongue out.
Underneath the tongue and near to the side-edge of the tongue is where the SCC HPV site is/was.
It was measured as 17mm across at the surface and 15mm deep.
Graded after scans as: T2N0M0
11 weeks since diagnosis (which brings it up to 2 weeks after the part-tongue had been removed)........I am then told at the Maxillo Ward that the lesion had;
"SHRUNK to a T1 (from a T2) and WAS NOT HPV-RELATED AFTER ALL".
I KNEW the lesion/tumor had been shrinking week by week and I said so to all the Doctors and to Nurses on each visit and on the phone but they all just wasnt alarmed by me saying this.
They may have thought I was delusional or having the 'in denial syndrome'? This is what I felt anyway.
My 1st questions to the experts are the following:
Q. CAN A T2 SCC of the lateral tongue SHRINK? and to this extent? (as detailed above).
Qs. And if this is a popular happening? Rare? Or not known to happen?
My second Questions to the experts are the following:
Once the resected tongue tissue is removed by the Surgeons, it goes under the microscope and is also stain-tested for all sorts of things, including measurements, margins info/reports, and of how it's behaving.
It also tells you of this info in the Macmillan book and on the NHS website and on cancer research UK.
Q. When a parient then sees the Consultant 2 weeks after surgery in great anticipation and with great worry for the results of the Patholigist's tests/reports/findings on the resected tongue tissue removed at surgery sometimes expained to the patient and given to the patient in the following statement/sentence:
"IT'S GOOD NEWS, THEY'VE FOUND NOWT".
There was ZERO elaboration regarding ANYTHING ELSE of these crucial results apart from saying "IT'S NOT HPV" and "IT'S BEEN DOWNGRADED TO A T1".
And that is ALL of the info given to me as 'THE' results from the path lab.
Q. Is this normal? Is this what the patient receives?
Q. What about margins? for starters.
Q. Plus all of the vast tests that are done? WHAT ABOUT THE REST?
Q. And what does, "They've found nothing" actually mean?
OTHER UP-TO-DATE INFO RE NOW 19 DAYS POST-OP:-
I CANNOT SLEEP I am now nearly out of pain and able to eat better though.
I have acute constipation and have to dig it out!
I've stopped taking the Codein Phosphate and only take 2 or 3 Tramadol within 24hrs, id been taking the maximum 8 of for 15 days.
I'm dizzy when 1st get on feet.
And 3 months ago a 'swishing' 'pumping' sound started in my left ear (which is about 10cm away from where the lesion is/was. This ear-swishing pumping sound was only noticable at night when surroundings are quiet but now it's very noticable throughout the day and louder than before.
The sound is regular and is always a split second delay from the pulse felt on the wrists.
So it is from a pulse for sure.
I had mentioned it to Nurses and to the Consultant over the weeks but they said "it's probably just ear wax".
I've gone through a course of ear wax removal with off the counter £5 bottle of 'Earex Advance'.
The Consultant nor Nurses bothered to LOOK in my ear with the thingy they have with the light on the end.
I ALSO mentioned this to the Nurse who asked all the questions at the PRE-OP appointment and she too thought it will be only ear wax.
She was very good though at talking to patients, excellent actually.
BUT also NEVER BOTHERED LOOKING IN MY EAR.
I can't do that!!
I've read that tongue cancer can cause EAR PAIN when the cancer is infecting the lymph nodes situated in front and behind the ear (on side of your head).
Q. If the cancer is beginning to spread to the lymph nodes, CAN one of the signs be 'a swishing, pumping' constant sound in the ear?
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