question to tonsil cancer survivors and patients!!

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RE: question to tonsil cancer survivors and patients!!

by Dlynn1210 on Fri Mar 07, 2014 03:04 PM

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Rolando -

The important point to note in all of our responses is that an ENT was able to immediately diagnose our tonsil cancer.  Since you don't feel comfortable with the response you got from your ENT, you need to consult another ENT for a second opinion. 

Diana    

RE: question to tonsil cancer survivors and patients!!

by Sdurnell on Sat Mar 08, 2014 08:39 AM

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On Mar 06, 2014 8:32 PM billscampbell wrote:

Hi Roland,

I had cancer in my right tonsil.  I had a nagging sore throat (not acute pain) and was treated for strep.  I noticed a lump in my tonsil, but the primary doc said it was an enlarged gland.  When antibiotics failed to cure the throat, doc sent me to an ENT who diagnosed it in about 5 minutes.  He did a biopsy to confirm that it was malignant, but was sure it was even before doing the biopsy.  It was caught early, so it had not spread to the margins or lymph nodes.  My point is--if it is cancer, you want to catch it early.  As others have said, get a second opinion (I did).  Then, if it is cancer, take care of it as soon as possible.  There are several different protocols: some do surgery followed by radiation and/or chemo; others do radiation first, then surgery; still others do radiation and chemo without surgery.  

Actually, you don't have to take care of it ASAP;  you actually have some time.  Each of the protocols Bill mentions has a time frame, and your doctor(s) should help you begin treatment within that frame.  When I was diagnosed I had already made plans to visit my elderly parents, and paid for the airline tickets.  My doctors were able to coordinate my treatment around that week so that I could go and still be within the prescribed time frame.

Not that you should mess around with a cancer diagnosis, but there is usually not a reason to act too hastily.

Susan

RE: question to tonsil cancer survivors and patients!!

by Dlynn1210 on Sat Mar 08, 2014 01:43 PM

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It is always better to address any health issues ASAP in order to avoid the problem from getting worse.  Certain types of cancer are very rapid growing and require immediate attention.  There may be some delay before beginning treatment so it is always important to know what you are dealing with.     

As for tonsil cancer, there are a few weeks of preparation after someone is diagnosed before they can begin actual treatment.  Generally, the first step is surgical removal of the tonsils which requires time to heal.  A biopsy of the affected tonsil will confirm the diagnosis plus reveal the type of cancer.  A dentist has to be consulted for any teeth that have to be pulled or that need care.  A CT scan will direct the constructure of a mask which is required for treatment.  

Once treatment begins there is no fooling around.  While I was undergoing treatment, my oncologist gave me "permission" to take Friday off to fly to FL for the birth of my granddaughter (I flew out on Thur evening) but I had to be back on Monday morning.  There have been a couple of people on CC who had tonsil cancer whose oncologist chose radiation only but the majority of us had both radiation and chemo.  It is generally five days of radiation with one chemo treatment each week for up to six weeks (few make it the full 6 weeks though - I made it 4).  My radiation was fragmented - meaning split up into two sessions a day to lessen the side effects. 

Tonsil cancer, unlike many cancers, is easy to diagnose by an ENT just looking into your throat.  A biopsy will confirm the ENT's suspicion and show the type of cancer.  Since tonsil cancer exhibits few symptoms, especially in the beginning, once suspected it needs to be checked ASAP.  The fact that rolando had already been to an ENT who told him he had nothing to be concerned with is comforting.  As he was still concerned, a second opinion from a different oncologist should give him peace of mind.   

Diana 

           

RE: question to tonsil cancer survivors and patients!!

by Sdurnell on Mon Mar 10, 2014 03:45 AM

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In addition to what Diana has described, I'd recommend, should it be a cancer diagnosis, that you consult with a dentist or oral surgeon who has had lots of experience with cancer patients.  Some dentists are not aware of the seriousness of ratiation treatment effects on bone and teeth.  My dentist was not, so my ENT sent me on to an oral surgeon with more experience.

I also recommend you get your second opinion out of the way, as it will ease your mind either way, and the sooner the better, as you are extremely worried.  Being in the limbo you seem to be experiencing can't be good.  If in fact this doctor does find cancer, s/he can then explain the timeline you will need to treat it.  You really don't need to panic, though, so keep your negative diagnosis and hope for a second.

Susan

RE: question to tonsil cancer survivors and patients!!

by lwoctober on Sun Nov 23, 2014 01:24 PM

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Hi Roland..I am having simular problems but mine is red and painful..it kinda feels like an achy cramp..My left tonsil is bigger than the right and my lymph node is slightly enlarged and my ear is hurting.. I did go to the hosptial and they said "I didnt have any ear infection, no strep and maybe I had a virus..blah blah..it does go up and down a tiny bit bit now its been 6 weeks and no real change..I do have an appt with a ENT Dec 2nd but I would love if someone could answer questions that has experienced tonsil cancer..Did you have any pain at the site of the tonsil? Any redness? And I would like to know if you do have a growth on the tonsil can it be on the other end and maybe the Dr cant see it? Linda 

RE: question to tonsil cancer survivors and patients!!

by lwoctober on Sun Nov 23, 2014 01:27 PM

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On Mar 04, 2014 9:15 PM Sdurnell wrote:

My cancer was stage III, and has metastasized to a lymph node in my neck, which was enlarged but not painful.  (It is most often diagnosed at III or IV.)  I mentioned it to my doctor, who ordered a CT and on the basis of that referred me to an ENT/neck surgeon in the city.  He did a needle-guided biopsy which came back positive, so next did a modified radical neck dissection, which means removing all the lymph nodes on one side of the neck, including the big one.  (Hospital, overnight stay, not a big deal.) Pathology found that only that one was cancerous, and the cancer was encapsulated in that node.  I had radiation to my entire jaw and neck for five weeks, no chemo.  And then there was the nightmare of recovery.

Susan

Hi..Thank you for your info.. Did you see your tonsil was bigger? red? any pain at the tonsil site? I know the nodes do not hurt really..Linda

RE: question to tonsil cancer survivors and patients!!

by lwoctober on Sun Nov 23, 2014 01:29 PM

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Hi..Any pain from the tonsil? redness? I know the nodes do not hurt.. Thank you Linda

RE: question to tonsil cancer survivors and patients!!

by Dlynn1210 on Sun Nov 23, 2014 01:33 PM

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On Nov 23, 2014 1:27 PM lwoctober wrote:

On Mar 04, 2014 9:15 PM Sdurnell wrote:

My cancer was stage III, and has metastasized to a lymph node in my neck, which was enlarged but not painful.  (It is most often diagnosed at III or IV.)  I mentioned it to my doctor, who ordered a CT and on the basis of that referred me to an ENT/neck surgeon in the city.  He did a needle-guided biopsy which came back positive, so next did a modified radical neck dissection, which means removing all the lymph nodes on one side of the neck, including the big one.  (Hospital, overnight stay, not a big deal.) Pathology found that only that one was cancerous, and the cancer was encapsulated in that node.  I had radiation to my entire jaw and neck for five weeks, no chemo.  And then there was the nightmare of recovery.

Susan

Hi..Thank you for your info.. Did you see your tonsil was bigger? red? any pain at the tonsil site? I know the nodes do not hurt really..Linda

I was told by my ENT that when ONE tonsil is greatly enlarged while the other is NORMAL size almost always means cancer.  My left tonsil took up half my throat (after she pointed it out - how many of us look at the back of our throats?) and had no discoloration - not an infection which would cause redness - while my right one was so tiny it was almost invisible - which is why I had been told my entire life I was born without tonsils - like my mother. 

Also, there was NO pain involved which is why tonsil cancer is often overlooked for some time (slow growing).  The only symptom I had in the beginning was severe fatique - I went to bed tired and woke up tired.  At the very end I began to have VERY MILD chest pains - and I do mean so mild they didn't bother me during the day - I only noticed at night in bed. 

Diana

RE: question to tonsil cancer survivors and patients!!

by lwoctober on Sun Nov 23, 2014 01:46 PM

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Thank you.. Is it possible to have pain or is everyone the same? I was told I didnt have any infection and this is now 6 weeks..its causing me to be depressed..ugh My left tonsil is bigger and I see a white stripe and red kinda looks like spider veins and the other tonsil I cannot even see that one..This feeling is like cramping. no fever. I do have chest and back pain (mild) also left side..My ear is aching off my head..No ear infection the ER checked my ears but they gave me a zpak anyway and I took them all.. Linda 

RE: question to tonsil cancer survivors and patients!!

by lwoctober on Sun Nov 23, 2014 01:51 PM

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oh and I do not know if this matters but I am getting a lot of heartburn..way more than usual...Linda

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