Advice, Help, Newbe

meaganb

JGavin said:

Thank you for your response!

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.  

ACC stands for Adenoid Cystic

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!

JGavin

Skiffin16 said:

Tonsilectomy

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

Hi John, 
You mentioned your

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.) 

jcortney

JGavin said:

Update

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

I am astounded

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

fishmanpa

JGavin said:

Hi John

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.  

He Knew

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

jcortney said:

I am astounded

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

Today I went for a second

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.  

JGavin

fishmanpa said:

He Knew

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"

Hi "T"
Thank you for your

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

fishmanpa said:

He Knew

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"

Hi "T"
Thank you for your

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.  

Skiffin16

My Expereince...

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

 

fishmanpa

JGavin said:

Hi "T"
Thank you for your

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.  

Symptoms

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"

Laralyn

Here's a little perspective,

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

Laralyn said:

Here's a little perspective,

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!"

Laralyn, Your story is

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

JGavin said:

Laralyn, Your story is

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

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

Skiffin16 said:

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

Yeppers

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"