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JGavin
Posts: 14
Joined: Jun 2013

Hi.  I am new here.  It's been a rough two months.  I had a tumor removed from my thigh, came back benign and I was elated.  In the time it took to have the tumor removed from my thigh, I found two masses on the BACK of my neck, and once everything was done and settled with the thigh tumor, I went and had the neck masses looked into.  After tests, tests, and more tests and countless doctor visits, the two masses in the back of my neck were removed and came back benign.  What brings me here today is that when I saw an ENT about the two neck masses, he had made a joke and said, "If I were you, I would be focusing on the large lymph node you have in the front of your neck."  I was so caught up in the two masses on the back of the neck that I didnt even notice the enlarged lymph node on the front left side of my neck.  I feel like with all the problems I have had I am at my wits end with this lymph node.  I also noticed that my left tonsil is larger than the right and it appears in a lobular form, where the right tonsil is round.  So to sum up, a large left lymph node, and a large left lobular tonsil. My fear is that this is HPV SCC, or possibly lymphoma.  I am a 28 year old female.  Married for 7 years and with two young daughters.  The lymph node and tonsil do not hurt.  But my left inner ear does only when I swallow a d has for a while now.  I do not know my odds of getting HPV SCC.  Everything I read focused on males 30 to 50 years of age.  But as far as younger women, I know it is possible, I am just trying to find out the likelyhood and what my chances are and the prognosis.  Is there anyone here who has been in a long remission with the cancer?  A lot of the research I find say 90% 2 year remission, but a lot of studies don't go beyond that.  What about 5 years, 10 years, so on.  I guess because this cancer is still new that is why there is still a lot to learn.  I am not diagnosed yet, but I am thinking it is a likely possiblilty for me.  It's now been well over a month and the lymph node is only growing, with no sign of any cold infection and is non tender.  My tonsil has not gotten bigger, but like I said, is very noticably larger than the right tonsil and lobular in shape.  I went to see another ENT and he said he would do a tonsilectomy to "ease me mind" my fear is that if this is a HPV SCC would there be a need to eush in for an additional surgery to get any remaining tissue?  Since this ENT is going into it as nothing more than an tonsilectomy, I am concerned the proceedure will not be done as it should be when cancer is suspected.  It also seems that a lot of ENT's are really not familair with the HPV SCC.  Any insight would be much appreciaited.  Thank you for your time.  

JGavin

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

First of all, its not xancer until they say its cancer. I was diagnosed with ACC last year at 27. I also am married with a young child. My ENT thought the tumor was benign. He only removed it b/c it was cauding ear pain. Lo and behold, it was cancer, but for our age group that is definitely the exception & not the norm. I went through radiation after surgery & am cancer free a year later. I would definitely find an ENT that will take your concerns seriously. Having surgery to remove lymph nodes is no walk in the park but if it is cancer, its certainly better to know than to just sit and wonder. Maybe they can biopsy the lymph node before doing full on surgery to remove it or tonsils. I have also heard that recovery from a tonsilectomy us not easy.Find a doctor you trust and move forward from there. Chances are its probably nothing but better to be safe than sorry. Also, I'm wondering why the first ENT mentioned the swollen lymph nodes but didn't do anything about it?

JGavin
Posts: 14
Joined: Jun 2013

Thank you thank you thank you for your response!  I have asked myself that question about the first ENT for the last month.  As a result, I refuse to go back to him.  The ENT who is performing the tonsilectomy was one that I had chosen because he was younger and a lot of research seems to report that it's a lot of the younger ENT's who are familiar with the HPV SCC because it is a "newer" cancer.  But this ENT is very hung up on the fact that I am a female, and only 28.  I am seeing another ENT today, but I am not sure what answers I will get from the visit.  I know it's not cancer until they say it is, I am just so hung up on it.  What is ACC?  Was your tumor visable just from looking?   I will keep you in my thoughts and prayers, as I do all people who have cancer.  

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

ACC stands for Adenoid Cystic Carcinoma. Its primarily a salivary gland tumor. It wss not visible from the outside but could be felt in my mouth & under my jaw. The tumor was about 2cmx2cmx3cm when it was removed. Surgeon also took 47 lymph nodes which were negative. I had to see several different Drs before anyone took me seriously. I had this awful earache & one ENT tried to refer me to a neurologist. I know its frustrating but keep pushing until you have an answer but also try not to stress. More than likely you are just fine! Keep us updated!

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

ACC stands for Adenoid Cystic Carcinoma. Its primarily a salivary gland tumor. It wss not visible from the outside but could be felt in my mouth & under my jaw. The tumor was about 2cmx2cmx3cm when it was removed. Surgeon also took 47 lymph nodes which were negative. I had to see several different Drs before anyone took me seriously. I had this awful earache & one ENT tried to refer me to a neurologist. I know its frustrating but keep pushing until you have an answer but also try not to stress. More than likely you are just fine! Keep us updated!

jim and i's picture
jim and i
Posts: 1729
Joined: May 2011

that is our motto here. if you are not confident in this docotor, get another opinion. look for an ENT thatis knowledgeable in head and neck cancers. maybe call a cancer center close by and ask them for recommendations. I pray that this is a minor problem as the others were.

Debbie

hwt's picture
hwt
Posts: 2100
Joined: Jun 2012

Express your concerns to the doctor and if you don't get satisfactory answers then get another opinion.

Prayers that you do not have cancer.

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

Welcome...

I think you are putting the horse way ahead of the cart.... You haven't been biopsied or diagnosed as of yet.... More than likely you are asking questions and putting yourself through a bunch of unwarranted anxiety and worry...

Yes, women get HPV+ cancer as much as the men, in my opinion and expereince here over the years..., and that's more than two..., actually at four, with many here out in the decades post treatment.

For an ENT to say that he'll take your tonsils out to ease your mind is rediculous to me, I'd drop him.

Go to a reputable facility and ENT with throat cancer expereince, which in itself seems dumb to have to say as any established ENT should have that expereince.

Survival rates and cure rates are actually very high these days..., much of the interent specifics aren't very accurate or updated I should say..., but they are getting there.

So my advice, get yourself a good ENT, and go from there...

What area do you live..., there are many hear that might be able to give you an ENT or facility recommendation...

Best,

John

JGavin
Posts: 14
Joined: Jun 2013

Thank you, John!!!  I was hoping you would respond to me!  I have followed your posts for the last few weeks on this forum while trying to research this cancer.  Today I was just at my wits end and started an account to see if I could get more info, as you say a lot of the research that is out there is not up to date.  And yes, the ENT is performing the tonsiectomy to ease my mind.  He also said that that is the only way to know for sure if there is an underlying cause for the larger tonsil.  But like I said, my concern lies with how the surgery will be performed.  

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

I'd presume that he could take a biopsy without taking the tonsils out, FNA or some other mode...

But, as for the tonsils coming out..., it's not really that bad for the first few days.., you still are limited to soft foods, runny mashed potatoes & gravy, soft mac n cheese, etc...

It's about the 3 - 10 days or so that has the most pain and more intense..., but they'll give you liquid meds to help.

All of that crap about ice cream wasn't true with me, LOL... I couldn't stand anything too hot, or cold during recovery.

Also, he should be able to tell you immediately if it's cancer..., or at least mine did.., he knew before I woke from surgery. It did take a few weeks to get results back as for HPV+.

Anyways, I didn't mean to come across harsh..., just don't get ahead on yourself as for it being cancer.

More than likely at your age, the odds of it being at least HPV+ are pretty low, I'd presume.

Best,

John

JGavin
Posts: 14
Joined: Jun 2013

Hi John, 

You mentioned your surgeon could tell imidiately that it was cancer.  After my second opinion today I asked if I would have any answer on the 17th, he said no.  That only pathology could tell.  :(  I was curious if you knew whether part of the tumor was exposed, and thats how they could tell, because it was able to bee seen from the outside?  

Thank you again for your time.

JGavin (It's Jolie, BTW.) 

fishmanpa's picture
fishmanpa
Posts: 1150
Joined: Jan 2013

Hi Jolie,

When I went to the first ENT, he looked at the CT results and examined and scoped me. I asked him to be totally up front and tell me what he thought. He told me, "I think it's cancer. I don't know what type... squamous cell, lymphoma...there are many types it could be but I've seen enough of it to know what it appears to be. Let's get a fine needle biopsy and find out." That was the day before Thanksgiving last year. I was DX'd with SCC on the 30th. 

I believe an exerienced ENT could recognize it.

"T"

JGavin
Posts: 14
Joined: Jun 2013

Hi "T"

Thank you for your responce.  What symtoms did you have?  Did you ever end up finding the primary site?  Or, do you know if it was HPV related?  That's crazy how the doctor just knew.  My appointment have gone nothing like that. I also have not had any testing done what so ever, even though I have requested imaging and biopsy's to be less invasive.  I've noticed between the different ENT's I have seen, they all seem to have different concerns, which leave me with a bit of whip lash. The first ENT was more concerned with the size of my left tonsil and what he felt was significant and there was ready to take them out and to ease my mind.  He didn't really pay much attention to the left lymph nodes.  This second ENT was not as alarmed about the left tonsil, but focused more so on the left lymph nodes.  So now he is putting in word with the first ENT who is removing the tonsils to also take the lymph nodes at that time.  Both scoped me as well, aside from a LOT of enlarged lymph tissue all along the back wall of my throat, they said there was nothing that stuck out as cancer.  But they also said that often times the tumors are not visible and are fully inside of the tonsil.  

JGavin
Posts: 14
Joined: Jun 2013

Hi "T"

Thank you for your responce.  What symtoms did you have?  Did you ever end up finding the primary site?  Or, do you know if it was HPV related?  That's crazy how the doctor just knew.  My appointment have gone nothing like that. I also have not had any testing done what so ever, even though I have requested imaging and biopsy's to be less invasive.  I've noticed between the different ENT's I have seen, they all seem to have different concerns, which leave me with a bit of whip lash. The first ENT was more concerned with the size of my left tonsil and what he felt was significant and there was ready to take them out and to ease my mind.  He didn't really pay much attention to the left lymph nodes.  This second ENT was not as alarmed about the left tonsil, but focused more so on the left lymph nodes.  So now he is putting in word with the first ENT who is removing the tonsils to also take the lymph nodes at that time.  Both scoped me as well, aside from a LOT of enlarged lymph tissue all along the back wall of my throat, they said there was nothing that stuck out as cancer.  But they also said that often times the tumors are not visible and are fully inside of the tonsil.  

fishmanpa's picture
fishmanpa
Posts: 1150
Joined: Jan 2013

Hi Jolie,

Initially, I had a cold/sinus infection with swollen lymph nodes on the left side of my neck last August. Treated it with OTC meds. It hung on and I went to my PCP in September. he prescribed an antibiotic. I finished the meds and the sinus invfection went away but my glands were still swollen (they did go down a little). My PCP advised waiting another couple of weeks to let the antbiotics run their course. 

Fast forward to Oct.... I still had swollen lymph nodes. They were hard and not painful. PC did one more round of antibiotics. No change and next was a CT scan and ENT appointment. The only other symptoms I had were fatigue and some night sweats. 

I had a tonsillectomy Dec. 21st 2012 (palatine tonsils). They did biopsies and a laryngoscopy. No primary was found. They did not find HPV. I went for a 2nd opinion at Johns Hopkins and decided on getting treatment there. Team recommended selective neck dissection followed by chemo/rads, I had surgery on Feb. 7th 2013. Selective neck dissection, 2nd tonsilectomy (lingual tonsils), more biopsies and another laryngoscopy. Night sweats stopped after surgery. Still no primary found but HPV found (missed the first time). DX'd Tx, N2b, MO, stage 4 HPV+

Are the ENT's you've seen associated with a CCC? A 2nd, even 3rd opinion from a CCC would do the most at easing your mind. I can't speak amy more highly of my team at Johns Hopkins. They were all over it. 

Positive thoughts and prayers

"T"

JGavin
Posts: 14
Joined: Jun 2013

Thank you, John!!!  I was hoping you would respond to me!  I have followed your posts for the last few weeks on this forum while trying to research this cancer.  Today I was just at my wits end and started an account to see if I could get more info, as you say a lot of the research that is out there is not up to date.  And yes, the ENT is performing the tonsiectomy to ease my mind.  He also said that that is the only way to know for sure if there is an underlying cause for the larger tonsil.  But like I said, my concern lies with how the surgery will be performed.  

JGavin
Posts: 14
Joined: Jun 2013

Oh and John, I am in cleveland Ohio.  And I am seeing the ENT's at the Clevland Clinic.  Where are you?  

rachel12yrsuv's picture
rachel12yrsuv
Posts: 435
Joined: Feb 2013

JGavin,

i too am concerned why first ENT did nothing.  Go to a teaching hospital in your area i am in the Philadelphia area and went to University of Pennsylvania and saw Dr. Weinstein(personality sucks, but Genius) i was 28 newly married female wanting to have children!  I was dx with NPC(nasopharyngealcarcinoma) stage 3, it was a SCC type viral cancer.  Today i am cancer free and 42(today!) so the answer as to whether or not it curable YES it is.  Stay off internet and get to good Doc instead of dxing yourself, i did that for years about other things and caused tons of wasted time worrying about what turned out tobe nothing!

 

keep us updated and God Bless!

  Rachel 

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

LOL, Rach, there you go blowing my presumption...

Although, I'll still stick to it, someone in their 20's have a very low percentage of having HPV+ derived H&N Cancer...

~JG

rachel12yrsuv's picture
rachel12yrsuv
Posts: 435
Joined: Feb 2013

According to drs. Then HPV wasnt even known i dont believe in 2000, they blamed it on the EBV virus i never had, i always blaned on chicken pox, who cares right, its been 12 yrs and still here gighting no matter what caused tgat hell! Lol

love ya John,

Rachel

JGavin
Posts: 14
Joined: Jun 2013

Rachel, HAPPY BIRTHDAY!  And God Bless you!   Thank you for the recommendation.  The first ENT was very short with me.  I felt like I was bothering him.  My husband and I were just trying to get answers about the two new tumors in my neck.  And the ENT was very dismissive.  His comment about the lymph node in the front of my neck was very tongue and cheek.  And yes, he did nothing, didn't even look into my mouth, so he never saw the enlarged tonsil.  The second ENT who is removing the tonsils did see the larger tonsil.  But he is so focused on my age and gender and therefore not at all concerned.  Maybe I am over concerned.  The lymph node is large.  noticable just by looking at my neck.  The tonsil on that same side is also larger.  I have also had intermitten hearing loss, but I have had that for going on 7 years and have had MRI's come back clean.  They say the hearing loss sensations are nothing to worry about.  Of course now I am wondering if it had anything to do with a tonsil tumor.  Not to mention the slight pain only when I swallow in my left ear.  

I will keep you posted!

Happy Birthday,

JGavin

JGavin
Posts: 14
Joined: Jun 2013

I also wanted to add that I have never smoked, and can probably count on one hand how many times I have drank.  That was a lot of my reasoning behind this being HPV derived.  

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

Howard the Duck..., LOL.

Someone from that area will probably reply to you..., I know there are a few that highly endorse The James in Columbus... Myself I am living in Central Florida..., though I do have relatives in the Cleveland area, as I was born in Mansfield, and grew up in Mount Vernon, LOL...

Your ENT that's taking the tonsils out may be up to speed on HPV... I'd just ask him  of his expereince with HPV and H&N Cancer... He should be able to tell you immediately if it is cancer, once they are removed.

My ENT scoped me, sent me for a CT scan, had me come back to his office all the same day..., which was the first I had ever seen him. He told me that he suspected throat cancer, and more than likely as I wasn't a smoker HPV dervived..., that was on Friday.

The following Monday, he too the tonsils out, did a quick biopsy, determined I was STGIII SCC Tonsil Cancer. He sent the tissue of for further testing, a few weeks later, results confirmed HPV+...

I live in a small town, but he did his Med School at Harvard, and his intern and resident at John Hopkins... Plus he writes several white papers and participates in many studies... He also has since performed a Syptoplasty on me..., he's awesome.

Back to your tonsils..., have you had any history...? My daughter whom is around your age had... She had to have her tonsils removed a few years ago... But hers would inflame and have big white spots on them...

JG

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

I'm pretty new to this site and I know that a lot of people here are valuable and helpful when it comes to things like this. I second getting another doc to speak with so you can get another opinion. Best of luck! I'll be praying thngs are okay!

CivilMatt's picture
CivilMatt
Posts: 3218
Joined: May 2012

JGavin,

You are correct to have concerns, but figuring out the exact diagnosis is paramount.  No need to scare yourself any more than necessary.  Best to find an ENT you like and is good and move forward.

Best

Matt

JGavin
Posts: 14
Joined: Jun 2013

I went to see a second ENT.  Not sure if I am more scared or not.  He looked an my tonsils and while he could see that one is larger than the other, he said it is not "significantly larger", so on that end he was not "overly concerned".  However, he is concerned about the lymph nodes.  He is putting in a request with the ENT who is performing the tonsilectomy to also remove the lymph nodes in my neck during that surgery.  This has me a little anxious.  Not over the surgery itself, but over that fact that this ENT feels it is necessary.  Until the 12th on June, which is my surgery consultation I wont have anymore information.  And the tonsilectomy and lymph node removal will not happen until the 17th.  I know that is but two weeks away, but as I am sure anyone can imagine, especially on this site, how painful the wait time is.  So for now my only choice is to hang tight.  I know that it is always best to start with the least invasive plan in these situations, I am am grateful that I wont be doing a lot of watching and waiting.  Part of me wonders if that is why so many people are diagnosed in the later stages?  Because the doctors prefer to do the watch a weight for 6 months or so.  Thank you all for you responses, kind words, support, and prayers.  

 

JGavin

ET@cowboy
Posts: 15
Joined: May 2013

Hey Jgavin, I was dx with SCC cancer in a lymph node in the neck. Ended up the original (primary) tumor was in my tonsil. I would have a biopsy of the node prior to surgery on my tonsil.  Just a thought, but a less invasive surgery would be prudent. They new rage in tonsil cancer surgery is Trans Oral Robotic surgery (TORS).  The healing and pain results are better. The pain is less  intense. I would be worried more about a doctor who is operating without a proper diagnosis. If it is not cancer then there is no need to do surgery. Good luck and maybe this will be nothing.

jcortney's picture
jcortney
Posts: 432
Joined: Sep 2012

That none of your doc's have done, or even suggested a biopsy.  From my limited point of view, it's nuts to have surgery if there is no reason.  A biopsy will tell you in a day or two if your lymph node and/or tonsil are infected.  No Cancer, no surgery.

Joe

JGavin
Posts: 14
Joined: Jun 2013

Today I went for a second opinion to a different ENT.  I asked for a biopsy.  He said when dealing with lymph nodes, biopsy can come back inconclusive, or offer a false negative.  And as for the tonsils, I have wanted mine out for years, because they are so large to begin with.  I'm only bummed that this is the reason my tonsils are finally coming out, because one is larger than the other and then the lymph node involvement on the same side.  But yes, I see your point.  It is a lot of surgery for a maybe diagnosis.  

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

When I said my ENT knew immediately, it was when I was speaking of him just removing the tonsils and doing a biopsy while I was recovering... I'm not sure how he did that or if it was through his expereince...

A little more history...

In october or so of 2008 I had a slight irritation in the back of my throat.., not bad, just noticeable. I wanted to get a flu shot, but not if I had something going on...I waited. Usually if something was bothering me, if not sever, eventually it would go away..., this didn't.

So sometime mid November I went to my GP, he just gave me anti-biotics for 10 days..., no good. I cam back, he gave me 10 days of Levaquin..., still nothing improved, not got worse though. So by now it's getting mid December and he sets me up to see my now ENT. But I couldn't get in until January 2, 2009..., a Friday.

By the time that rolled around, I had a small lump pop up below my right ear and down a little..., same side as the irritation.

I still never ever considered cancer.., no history, never smoked, not a big driner...

So my ENT looks me over, scopes me, sends me for a CT, tells me to come right back... He looks at the results, tells me he is 90% sure I have SCC Tonsil Cancer, more than likely HPV derived... I was in shock...

He sent me down for an EKG, and set me up for surgery on the tonsils that following Monday. He mentioned a FNA on the tumor also at the time of surgery...

So I go in for surgery, he removes the tonsils and does whatever to determine since it also had the tumor now, tonsils primary, lump secondary...STGIII Tonsil Cancer and the lymphnode.

He sent the tissue out for determing/confirming HPV, it came back a week or so later positive for HPV...

I asked about the FNA, and he said there was no point, the tonsils were cancer, so it wasn't going to confirm anything... So I guess technically, I don't know if the tumor was cancer or not.

They opted not to remove it as it was close to the main vein so to speak, LOL. Seeing what effect treatment woud have on it, shrink it, dissolve it, or nothing..., leaving me with getting a dissection when it was all over...

Again, good call as it dissolved away. That was confirmed after the nine weeks, but before starting seven weeks of concurrent... I had a CT and the tumor was gone...

But he advised me to continue with the additional seven weeks of concurrent. 

Whew..., LOL, I think that covers everything...

I don't understand how you have an ENT, that has you see a different ENT as for treatment....

I think that I'm back to you needing to go to a facilty that has an ENT that treats you and has expereince with H&N cancer...

My ENT is my main MD as for the surgery, he's the lead...

He diagnosed me, did the surgery, still does all of my scopes and check ups, selected my Chemo MD, my Rads MD, my surgeon for the port.. He was involved when selected the protocul..nine weeks Cisplati, Taxotere and 5FU, followed with seven weeks of concurrent Carboplatin and 35 daily rads...

Every call that he has made has been spot on....he saved my life....with help from all of the other MD's and their expereince.

JG

 

Laralyn's picture
Laralyn
Posts: 458
Joined: Apr 2012

Here's a little perspective, at least from my limited POV and research. Yes, it's more rare for women to have HPV+ throat cancer than men--men are 3X more likely. Orophargeal cancer is fairly rare to begin with--264K cases in 2009 out of the 12.5M total, or a little over 2%. So a disease that's rare anyway + HPV as a subset + more rare for women + even MORE rare for your age can lead doctors to make assumptions. I was diagnosed last year (HPV+ tonsil with lymph node involvement) and all of those compiled rarity factors made both the ENT and two different test results (biopsy and CT scan) get interpreted as probably not cancer... and I was 47 at the time. 

So there are two sides to this coin. On the one side, be diligent and follow up. If anything but pathology from actual tissue come back as non-cancerous, ask what else it could be and how you can treat it aggressively. If a CT, for example, comes back with results pointing away from cancer, what's the next step? In my case, the CT was indeterminate and concluded to be "very unlikely to be malignant" due to my age. Then the tech missed the node for the needle biopsy so the pathology was a lipoma (benign fatty growth) which wasn't questioned because the odds were so strongly against it being cancer. Four months later, the cancer had grown so aggressively that it had invaded my soft palate. So be persistent!

On the other side of the coin though, the doctors are acting the way they are because of those odds. I know it's hard to have to wait for information, but the odds really are extremely unlikely that it's cancer. You would be a minute subset of a tiny subset of another extremely small subset. Don't do something super invasive like surgery if there's a less invasive alternative. For example, ask about a fine needle biopsy guided by ultrasound. That would have ensured the needle biopsy in my case actually took the right tissue.

I'm not a doctor, and maybe you really DO need your tonsil and lymph nodes out. On the other hand, my left tonsil and two lymph nodes were at a state that I was diagnosed as Stage IV with begining PET reactions in the right tonsil and a right lymph node... and I still have all my lymph nodes and both tonsils! For HPV+ cancer, it's becoming more common to leave surgery until after treatments since in many cases it's not even needed. I think the Cleveland Clinic is a respected cancer center, but it may be worth a second opinion before you have surgery.

Whatever you choose to do, though, stay focused on the fact that it's very unlikely you have cancer. As they say here on the board, "It ain't cancer until a pathologist looks at the tissue and tells you it is!"

JGavin
Posts: 14
Joined: Jun 2013

Laralyn, Your story is amazing.  What a roller coaster you went through.  I can't even imagine.  At my second opinion which was yesterday, I did ask if there was less invasize tests that could be done to offer me answers.  Imaging, blood work, biopsy, something.  I was told that those things are available, but not recommended for my case.  I am starting to get more confused...Everyone is telling me about all the little things they have had done and none of those were offered or even recommened to me.  The second ENT did elaborate why they would not do an FNA, because of the likelyhood of the node being missed, or offering a false negative which he explained happeneds often in lymph node FNA's.  And with the size of my lymph nodes he felt it is best to get them out and since I am already set to have the tonsils removed they are going to remove the nodes then as one proceedure.  It baffled me when he recommened this.  To be honest it scared me even more that he thought that was a necessary proceedure.  Thank you so much for your input.   How are you now?  I imagine you are done with treatment?  Are you in remission?  

 

Jolie

Skiffin16's picture
Skiffin16
Posts: 8137
Joined: Sep 2009

So somebody correct me if I'm wrong....

Doesn't removal of the lymphnodes mean a dissection of some degree...? I'm definitely no MD, far from it..., but that seems a little aggressive when you aren't sure if it is or isn't cancer?

JG

fishmanpa's picture
fishmanpa
Posts: 1150
Joined: Jan 2013

I'm not a doctor either but removing the lymph nodes means dissection in my book. I have the scars and nerve damage to back me up ;)~

"T"

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