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Re: Tonsil Cancer? [Re: PaulB] #198802
07-30-2019 02:43 PM
07-30-2019 02:43 PM
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Cooper Offline OP
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Hey PaulB!

Thanks for your message. I do understand that a number of tonsil cancers cannot be seen. I’ve read your story and the stories of others here and even a few articles easily found via google. I’ve read it can hide within the deep tonsillar crypts. Which I’ve also been told that I have. It pains me that I know all this (because I’ve spent an absurd amount of time searching and researching), but none of my doctors are concerned about this possibility - or so none of them have brought up. It’s honestly so discouraging at this point and my continued discomfort has me depressed.

I’m suspecting, and correct me if I’m wrong, that your suspicious node that led to the biopsy was “enlarged” by clinical standards? I know you’ve said that you’ve had others that were very small... and I believe WERE malignant? The thing is, my nodes were not deemed to be enlarged by clinical standards (the largest is 9mm in the short axis... no other information on the other nodes.) I believe I can palpated 4. One on the left (side that is asymptomatic) and three on the right. None of those have noticeably changed size in 6 weeks. And none of my ENTs are concerned with them... saying they are probably just reactive nodes that may have/will be always there. I have no idea if they’ve actually been around for awhile or not... didn’t feel them until my neck started feeling funny and noticed my tonsil. My CT also noted the tonsils were bilaterally mildly enlarged but pretty much symmetrical.

It’s beginning to feel like I’m stuck until things get worse, get better and I can just move on. If this truly is TMJ, I feel like there should be more advice being given to me in the way of pain management. My jaw hurt so bad when I got home that I had to pop 4 ibuprofen just to take the edge off.

If you or anyone else knows how one might 1. find an ENT who specializes in HNC 2. convince a scheduler to fast track an appointment. I’m in the greater-Boston area. I called one of the CCC listed and they actually gave me the number of the same ENT practice I’m already being seen at. I’ve seen 2 docs at Mass Eye and Ear and one at Boston ENT which I believe is associated with Partners who operates Brigham. I believe I put a call in to Beth Israel as well. I’ll figure it out and make calls tomorrow.

Re: Tonsil Cancer? [Re: Cooper] #198803
07-31-2019 06:21 AM
07-31-2019 06:21 AM
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Cooper Offline OP
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Okay... I made an appointment for tomorrow with an ENT who is also a HNC Oncologist Surgeon. Her reviews aren’t stellar (mostly complaints with her bedside manner), so that worries me because I’m super sensitive and emotional. BUT I’m not there for someone to be nice to me, just for someone to take my concerns seriously who also has experience. Apparently this practice has access to all my records from all the ENTs I’ve seen. This makes me a tad nervous since she could be coming in with the expectation that I’m just another hysterical hypochondriac.

Re: Tonsil Cancer? [Re: Cooper] #198804
07-31-2019 09:42 AM
07-31-2019 09:42 AM
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Posts: 345
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KristenS Offline
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KristenS  Offline
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I don't think you're hysterical. You could, possibly, be a hypochondriac ... but that's for a medical professional to determine, right? And you DO have real and legitimate pain, and having all those records together might just give this new person enough information to figure it out.

Or not, as they never seem to have time to review it all beforehand. But at least she can listen to you and review it after, if necessary.

I hope this goes well for you and you at least find the beginning of answers.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Tonsil Cancer? [Re: KristenS] #198805
07-31-2019 10:19 AM
07-31-2019 10:19 AM
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Cooper Offline OP
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Cooper  Offline OP
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Thanks Kristen. I won’t argue that I’m a hypochondriac. I mean, in this situation, if that’s the bottom line then I’ll gladly wear the title. Funny enough, I spent the first two years of my daughters’ lives (twins) ignoring my health all together. I didn’t have anyone to watch them (no family nearby) and then used all my sick time when I finally went back to work on them. I hadn’t had a physical in a few years or any other routine visit... including a dental exam. It was always on my mind, but there was never time... husband who works late, missing work after a year-long unpaid maternity leave, etc. Now I’m finally prioritizing my own health (lost 50 lbs and have kept it off for over a year!). Which for me, coupled with anxiety/depression/panic, can lead to some unpleasant mental places.

I appreciate your continued support. I’m sure, as someone who has been through what I’m worried about, it can be annoying to have another hypochondriac post up a storm. So your positivity and advice is so much appreciated.

Re: Tonsil Cancer? [Re: Cooper] #198806
07-31-2019 10:29 AM
07-31-2019 10:29 AM
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Posts: 345
alabama
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KristenS Offline
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KristenS  Offline
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No problem, Cooper. I've had pain that no one could or would solve, and I absolutely hate when that isn't taken seriously. I really and honestly hope that this is not where you end up belonging (who wants to be in the cancer club?) but right now, it seems to be the place you're heard. I don't respond well to certain common medications, and one neurologist, who swore she had a whole list of ideas when I first went to see her after my family doc and my dentist ran out of ideas ... she told me, when I stopped the medication (I took it anyway, knowing it would cause me ill and long-term effects, so I could be seen as a good sport) that "No one ever has that problem, it's not a real side effect, it doesn't exist" and after I proved it was the first side effect on the list, she hemmed and hawed and then admitted she had no other ideas and "You're really a difficult patient, aren't you?" No admission that I was still in a great deal of pain. No admission that there was a real problem. Just that her one answer for everything didn't work, and so I must be the problem.

Yeah, I stopped seeing her and asked for a different referral. Who started with the same med recommendation, which I firmly refused. He didn't have any better ideas either, but at least he was still trying. I gave up altogether and just lived with the pain, till life circumstances (read: more cancer treatment side effects) caused problems whose fixes seemed to also change the pain issues. I think I was right about the problem and its origin, and I've got my bets placed for when it will resurface, LOL, but at least right now I'm okay and I have better things to say if I ever have to return to doctors like that ... more information for my file.

So ... I will listen, because everybody needs somebody to take them seriously. Can't do much more than that for you, but I can at least believe you. Some things are just pain with messed up nerves, and can't BE fixed (in which case, doctors ought to just say so, and it may be what you're dealing with too), but even knowing that much is a good start.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Tonsil Cancer? [Re: Cooper] #198811
08-01-2019 05:02 AM
08-01-2019 05:02 AM
Joined: Jul 2012
Posts: 3,255
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PaulB Offline
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PaulB  Offline
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Cooper,

You may be hypochondriac, but that doesn’t mean you can’t suffer other ailments, and don’t just mean cancer. So far, the doctors haven’t found any, thankfully. You mention going to other centers on Boston. I’ve never been treated there, but I hear done are top cancer centers. I know of one doctor there who I never met, but I follow his articles. I believe he worked with some of my doctors in NYC. His name is Dr Hadaf and is chief of oncology at one of these hospitals. He wrote a book that was co-authored by my doctor.

You’re probably better off going to a cancer center as they see cancers every day and train for it.

Yes, I had a cancer that was as small as 3mm found by a PET/CT scan. It was a new recurrence that was early in its stage cause it wasn’t found before in prior scans and cancers.

Too bad you can’t have a PET/CT, but it’s expensive, and if a ct scan was clear they may not proceed to another, Idk.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Tonsil Cancer? [Re: PaulB] #198812
08-01-2019 08:03 AM
08-01-2019 08:03 AM
Joined: Jun 2019
Posts: 37
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Cooper Offline OP
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Cooper  Offline OP
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Posts: 37
Thanks Paul,

I’m going to see a doctor who is part of the HNC surgical oncology team at a top facility. Her reviews (that I’ve read) include many accounts of HNC patients. I’ve read more about her surgical successes than diagnosis but I she is a trained ENT. Obviously, I’m hoping for reassurance and to truly feel reassured. I’m super nervous... this is the first time I’ve felt THIS nervous since I started this journey.

Just a question... I know that your tonsil cancer was not visible to the eye prior to your tonsillectomy, but was the tonsil that had the cancer different from the other in any way? I’ve read many articles on asymmetry of the tonsils and how in most cases, this asymmetry is benign. Mine are also probably not more than a degree different in size but the rt one does have (that I can see) extra tissue that extends down further into the throat. I know my ENTs have seen a lot more tonsils than I have, so maybe for them this is something they see more often while for me, it’s alarming. I only wish I had been more aware of my oral structures so I’d know if this was a more recent development or if it’s just how I’m made. Honestly, up until the past couple of years, I used to get frequent sore throats! Often it was viral but I’ve had strep a handful of times as well. But never often enough to see a specialist.

Anyway, I’m nervous so I’m rambling. Hoping for a positive outcome!

Re: Tonsil Cancer? [Re: Cooper] #198814
08-01-2019 02:25 PM
08-01-2019 02:25 PM
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Posts: 3,255
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PaulB Offline
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Cooper,

Good luck with your appointment, and hopefully it brings some type of resolve for your concerns.

I never had a tonsillectomy, although the chairman of the head and neck cancer division did the robotic surgery on tonsils, probably clinical trial, which was new in 2009, and was one reason I went to that ccc. My surgeon was in the same hospital under him, but he didn’t do the robotics, so I went on to do Induction Chemo 3x, massive dosage of three chemos, which was to be followed by 7 weeks chemoradiation, I only did one week of induction chemo, and made it home for the weekend, but was hospitalized at a local hospital that day. From there things went from bad to worse and was unconscious for a month, in the hospital and nursing facility for 6 months, and couldn’t walk for a year. I actually had to learn to walk again. Thereafter, I had 6 more recurrences.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Tonsil Cancer? [Re: PaulB] #198816
08-01-2019 04:19 PM
08-01-2019 04:19 PM
Joined: Jun 2019
Posts: 37
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Cooper Offline OP
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Cooper  Offline OP
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Joined: Jun 2019
Posts: 37
Paul,

What another tough chapter in your story!

So, unfortunately, the appointment wasn’t much different than what I’ve encountered thus far. Though the doctor listened to my concerns/symptoms (despite having my full record from the other ENTs available to her), she supported their findings but not with any more information, as I had hoped.

She did concur that my right tonsil is larger. She denied the presence of any signs of infection or tonsil stones. Which was surprising because the ENT I saw Tuesday mentioned both and was going to put me on augmentin though I think she forgot as I haven’t got notice of it being called in. I can definitely see “debris” in the tonsil crypts but it does appear to wipe off rather than pop out, as I expect a stone would.

I asked her about the lymph nodes and she stated she wasn’t concerned with them. She said they are not pathologically enlarged. I asked about a biopsy of the nodes and she said they are too small and she wouldn’t be able to get an adequate sample. Plus, if they contained cancer cells, we would have to go back in to look for the primary anyway. This was after she said that it was a “gray area” when the tonsil was enlarged but not in a worrisome way and it appeared healthy. She said a biopsy would be the only way to know but that she wasn’t stating that was necessary. She kind of left that to me I guess. I told her I didn’t want that unless she felt I was putting myself at further risk by not, she didn’t really answer but ordered a follow-up CT for late September (3 months after the last one), to see if the tonsils had changed. She said several times “tonsil carcinoma usually presents itself over time... it’s been 6 weeks since your CT and it hasn’t presented itself yet.” I could only guess she meant a pathologically large lymph node appearing or a visible mass on the tonsil.

She gave me another TMJ handout. Almost verbatim from the one ENT 2 gave me (complete with typos!) Told me to ask my dentist about a bite plate. Do some exercises. Use some heat. Take ibuprofen regularly. See me back with any changes.

I’m stuck somewhere between feeling like this is a story I’ve read a few times here before. You know, the watch and wait (she actually used those words) and then the progression and dx. And then I tell myself that she and 3 others had no concerns regarding cancer and are aware that that’s my concern... so there have also been plenty of folks on here who get the “it’s all OK!” And don’t question it, and probably, it is, right? I’m only reading about the few who were missed not the many who were in fact, ok? I asked if she had seen many benign asymmetrical tonsils and she said “yes, tons”.

So that’s all I have for now, I guess this is my last post. Thank you all for following my story, lending an ear to listen to my thoughts/fears, and giving me so much of your time and support. You cant imagine how much having someone taking me seriously has meant to me. Everybody needs a shoulder to cry on sometime and I dont know how I would have coped without Kristens help. Paul I appreciate all the in depth research you have done to learn so much about oral cancer, thanks for sharing it with me. For now its best if I try to begin putting everything behind me, at least for now until I can sort this out better.

Re: Tonsil Cancer? [Re: Cooper] #198817
08-02-2019 09:34 AM
08-02-2019 09:34 AM
Joined: Jul 2012
Posts: 3,255
NYC
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PaulB Offline
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PaulB  Offline
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Joined: Jul 2012
Posts: 3,255
NYC
Cooper,

I’m glad you were able to see a reputable doctor at a CCC, and from her findings, there is no cancer, which is a great thing! Like I mentioned, the only real way to really decide if it’s cancer or not is a biopsy, but I’m sure if there were any indications of cancer they would have done more as surgeons like to operate. I don’t know what level of suspicion is needed before one is done? I’ve always had a FNAB first, fine needle aspirational biopsy under ultra sound guidance, and most, if not all proved positive for cancer. I think for other potential surgeries they needed to confirm the positive FNAB by a direct biopsy under anesthesia. Then the surgeon proceeded to surgery or not depending on the results in the operating room.

I hope all your tests prove negative! There could be something there, idk, but you’re on the case! In the interim, you found out some details about minor medical issues that can be treated.

As mentioned, I wish they could just do a PET scan, which is pretty sensitive for cancer, but it’s still not 100 percent! Their expensive, about $8,000 here, but since you had a Ct scan and physical check the doctors did not find anything. If they did, maybe a Pet Scan would be ordered, but sometimes they don’t and just use the CT scan, which wasn’t my experience as I always had a PET scan initially or after a CT or MRI.

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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