ENT Follow-up - Post MRI

Yesterday, Nov. 22nd, I had an office visit with my ENT, expedited by my wife.  Thank you, wife.  The radiologist that evaluated my MRI already reported that nothing was found.  What I really wanted to discuss was what I had found and for him and to address a bunch of questions I had from discussing my case with other doctors I had casual conversations with.

First and foremost I asked him about what I saw on my PET scan and how what I saw seemed to differ from what the radiologist reported.  First thing my ENT did was thank me for my due-diligence in being proactive in my case then asked how I became so good at reading PET scans.  My wife interjected that I'm and I.T. tech and am very meticulous.  That seemed to make some sort of sense to him and he commented on how he didn't think he's ever had a patient read a PET scan and send him images from it.  Ya, well, I'm highly motivated to get to the bottom of this.

Anyway, he went on to say that first of all these scans tend to be tricky to read and its sometimes hard to determine where "hotspots" actually present themselves in tissue and that it's difficult to determine a location based on a 2D screenshot.  I told him I understood that and that the image I sent him was just a reference shot so that he would know where in the images 3D to get a better look at what I was concerned about.  He then asked where I got those images and I told him off the CDs I had sent him.  He said that was interesting because, for whatever reason, all the images from the CDs hadn't been uploaded to their system, so they didn't have access to everything I did.  He did confirm that he did review the images before surgery but didn't realized that he was missing some of the data.  Now that he has all the CDs with all the images he's going to go back personally and review all the images to see if they reveal any new information.  I also asked him if he can have their radiology department review the images and he agreed that would be a good idea and would have that done.

Another question I had for him was whether, during my surgery, he felt around the other areas of my mouth for lumps or irregularities and if he scoped my throat looking for it further down.  He said that he did and nothing else presented itself.  He said that if my Palatine Tonsil hadn't been so hard, like it had a tumor inside, he would have taken out my lingual tonsil at the same time, but because it presented itself so strongly it seemed like it was definitely in there.  I, or my wife, also asked him if pathology had evaluated my tonsil tissue during surgery.  He said they did but what they can do during surgery is very limited.  He said to get a detailed report they have to send it out and they take very fine slices which take days to complete.  I asked him if he would have pathology re-examine my tonsil tissue that they removed to double-check that it's not there.  He said he would have them go through it again.

I then asked him about the Tumor Board.  He first explained some common misconceptions that people have about the Tumor Board.  He then went on to say that it's standard protocol for all cases at this medical facility to go before the Tumor Board and mine did prior to surgery.  I asked if he would present my case again and he said he would.

My final request was to have him scope my throat now to see if he could see anything that would be causing the pain I'm feeling now.  He was reluctant to do so.  I probably would have just let it go but my wife was insistent.  (I'm extremely thankful I have her with me though this.)  He eventually capitulated and scoped me.

First of all it was fascinating to see inside my own body, but everything as far as I could tell looked fine.  He did point out what looked like a very small ridge below my tongue which he said might be the location, but it's very subtle.  To me it looked like nothing and it made me feel good to see my throat tissue look so healthy.  As far as the pain is concerned, he said it could be caused by the cancer/tumor could be pushing up against a nerve.  I asked if it could be post nasal drip or acid re-flux.  He said it could, but he didn't offer up much else.

Finally I asked him if it's safe to assume that because the cancer/tumor is so difficult to find that it's of a certain size.  He said that more than likely it's probably smaller than a centimeter.  Tumors that small or smaller usually don't show up very well if at all.

So, we decided he would do another surgery and biopsy some tissue in the back of my tongue.  It may be a small amount or more if the small sample doesn't prove fruitful.  Depending on the tissue sampled I may go home the same day or need to spend the night.  That would also determine recovery time.  I'm scheduled to go back into surgery Dec. 19th.

He'll also do all the other things discussed to see if any new information turns up.  Hopefully something more concrete presents itself.

Overall the office visit was very positive.  Everything we discussed gave me a sense of confidence that they are doing their due-diligence.  Additionally, I am very pleased with my ENT's attitude.  He was very open and forthcoming with information, open to suggestions and willing to do everything I asked for.  This has been my best experience with him so far and I feel like he's doing everything possible to treat me as anyone going through this should feel.

Moving Forward Again

Friends to the Rescue
I posted to Facebook asking my network of family and friends for a referral to a radiologist for a second opinion of my scans.  It wasn't long before for a few of my friends reached out to me.  That alone was enough to raise my spirits and made the world of difference emotionally.

I spoke with my friends brother-in-law over the phone this morning on the way to work.  He's a doctor out of San Francisco.  Very nice guy who was genuinely concerned for my well-being.  He had a few great suggestions.

He recommended I have my case reviewed by the Tumor Board.  Being that I'm young, have had surgery already and the primary site was still unknown made me a good candidate.  The Tumor Board is a panel of doctors that review cancer cases to discuss the PET/CT/MRI images, tests or pathology results and past treatments.  They brainstorm and decide on what best course of action would be.  Sounds perfect!  I feel like the more people I have looking at this the sooner it'll come to a resolution.

It also seems to me like my Oncologist and ENT aren't communicating much, if at all.  I asked if he recommended having an Oncologist at the same medical center as my ENT and radiation oncologist and he did.  He said my Oncologist should really be the one spearheading my treatment and if he's at the same medical center as the other doctors he can bang on doors and get answers.  I did some research and I think I found one.  Just have to make an appointment.

Another thing he said I could do is ask my ENT to have the pathology department take another look at my tonsil tissue that was removed.  He said the tissue is usually saved and sometimes the first look doesn't always prove fruitful, but a second look does.  It's worth a shot.  Hopefully my ENT agrees.

So that conversation was pretty awesome.  It gave me some direction and confidence.

Pain in the Throat
However, there's still the fact that I wasn't scheduled to see my ENT until Dec. 1st and I'm still experiencing intense, sharp pain in my throat throughout the day.  It was bad enough last night that I was seriously considering going to the Urgent Care or Emergency Room last night.  Then I did some research.

I found, on the Internet of all places (lol), that pain around the Adam's Apple, which is where I'm experiencing it at the moment, could be caused by acid reflux (which could be caused by stress) or post-nasal drip.  I thought about that and, obviously, I've been stressed lately, especially in the last month or so when I first heard the news that they didn't find the cancer in my tonsils.

I've also been having some post-nasal drip, maybe even during the last couple weeks.  Hmmm.  So lastnight I took some Benedryl before bed.  Will help me sleep at least.  This morning, no difference, but it may take a few days.  So I'm going to take some antihistamine/decongestant over the next few days to see if it goes away.

Enter the Wife
But my wife, on the other hand, is not going to standby and let me suffer.  She could see I was miserable and was in pain.  So she asked if I wanted her to call to try to get me into the ENT earlier.  I was highly doubtful she could.  I had already called and left a voicemail letting them know I was in pain and wanted to be seen sooner.  Maybe they were just waiting to see if I was REALLY in pain and would call back?

I figured it couldn't hurt so I told her to go ahead and give it a shot.  Well, she blew my mind.  In a few minutes she had gotten me an appointment first thing in the morning the very next day!!  I asked her how she got me an appointment so soon?  She told me that unleashed "bitch mode" on them and they got me in.  Wow!  Word of warning out there, don't mess with an Irish woman or her man.  Word of wisdom, if you have cancer, hope you have a spouse that has a fully functioning "bitch mode" available. ;)

Angry and Frustrated

I finally got my MRI done last night and they gave me a CD right away to take with me.  When I got home I opened it up and began looking at the images.  Of course, being a lay person, I couldn't make out what to look for.  So, I Googled it.

While reading posts on how to find tumors in MRI images I came across a YouTube video of a woman, Catherine Elliot, who went through a cancer ordeal similar to what I'm beginning to going through now.  It showed her scars, talked about her procedures and some of the side effects.  Pretty inspiring how she handled it.

I was curious to see how she was doing so I immediately checked the comments to see if she was still actively commenting, being that she began her ordeal in 2012.  That was my mistake, because in the comments I came across women who said they had lost their husband to oral cancer within months after being diagnosed.  That hit me like a punch to the stomach and quite frankly freaked me out.  A sense of urgency began to overwhelm me and the fact that I may only have a few months of life.

I tried to take a step back.  I don't know their situations or treatment.  Could be totally different.  I already had a full PET scan and they didn't find it anywhere else in my body and it was only in one lymph node.  So, OK, I've got that going.  But still I couldn't shake the feeling that I've been too passive in my pursuit of a cure.

Things that I woulda, shoulda, coulda done began to fill my thoughts.  A few of the things I'm pissed about or should have done differently are:

1.  My ENT didn't have an MRI done before my first surgery to confirm the primary site.  I should have told him I wanted this done before hand.  I'm pretty sure he said he was going to do this in my first meeting with him but he and I both dropped the ball.  I should have followed up and insisted this be done before hand.

2.  One thing that I'm disappointed in my ENT about is that he didn't personally check-in on me before and after surgery to go over the procedure and see how I was doing. I just assumed that any good doctor, out of common courtesy and concern for his patient, would do this.  I should have asked to meet with my ENT prior to surgery to go over what was going to be done.  I just expected this to happen as standard protocol, but it didn't.

I would have confirmed that he was going to have a pathologist onsite to confirm the squamous cells were in my Palatine tonsil and if they weren't to go ahead and biopsy my Lingual tonsil, like he said he would in one of our first meeting.  I don't know why he didn't do this, maybe something happened and the pathologist couldn't be there.  Or maybe he was just overconfident in his diagnosis that he decided not to do this which set me back weeks if not months.

I feel kind of trapped where I am.  Living in a rural area I feel like this is probably the best service I can expect.  I would have to drive over an hour or more in major metro traffic to get better care.  That would add a tremendous amount of additional stress on top of what I'm already experiencing.  I don't know.

I hand delivered the CD of my MRI scans to my oncologist today and sent my ENT a message letting him know that I had my MRI done yesterday, that I'm experiencing pain in my throat and asked when is the soonest I can get in.  I logged into the patient portal of the imaging lab.  The portal said I shouldn't expect results from the radiologist until Saturday, Nov. 19.  It said they won't be available to me until they've been sent to the ordering doctor.

Prior to surgery I felt a discomfort in my throat.  I didn't mention it because I expected it to go away after surgery.  Then when I felt it after surgery I just thought it was a result of the surgery.  Now, seven weeks after surgery it hasn't gotten any better.  In fact, it's gotten worse and more painful, especially over the last few days.

From what I saw on the MRI CD and what I'm feeling I think the tumor is in my lingual tonsil.  It looks like it measures 10 mm x 13 mm, but I could be totally mistaken.  For now I'm just, impatiently, waiting for answers.

Surgery Follow-up and Pathology Report

I went in for my follow-up with the ENT doctor that performed my surgery.  He looked at my neck and mouth and said everything was healing as expected, actually better than expected.  He said I shouldn't expect the pain to go away before next week.  I just need to apply some lotion to it and it should heal nicely.

My wife asked about my weight loss.  He said typically patients lose about 20 lbs after this procedure.  We were both pretty surprised at that high a number.  At this point I've only lost 5 lbs but it's definitely noticeable.  I can tell you that keeping your weight it definitely a problem because eating is so painful.  I typically only have a couple good hours to eat after taking my pain medication because after that it gets increasingly painful up until the time comes around that I can take another dosage.  The reason I can hold out taking the pain meds is because it's only painful to eat or talk.  If I don't do either of those two things the pain barely registers.  That is until about the 4.5-5 hour mark at which point pain starts to creep up whether or not I talk or eat.

He asked how my shoulder was since there was a chance of me losing motor function or feeling numbness in it as a result of surgery.  I said it was perfect.  Totally normal.  I did tell him that my right ear was numb and part of my right jaw.  He said that was normal and feeling should return to those areas in about four weeks after surgery.

Then we moved on to the pathology results.  He said there was good and bad news and proceeded to give me the good news first.  The good news is that they only found squamous cells in one of the thirty-one lymph nodes they removed.  So, he said, as far as my neck is concerned I am totally healed of cancer there.  That's awesome!

The bad news, he said, was that the tumor wasn't in the palatine tonsil they removed.  I think I might have said in an earlier post that I thought they removed all the tonsils on the right side of me.  Turns out they only removed the right palatine tonsil.  He said it did have two masses in them; one about the size of a pea and the other about the size of a .177 caliber BB.  However when they cut them open and examined them under a microscope there weren't any squamous cells in them.  They did find actinomycosis present which is a type of bacteria.

He said either the cancer was there and my body took care of it (ie - healed itself) or it's somewhere else.  He said since he could feel the masses in my palatine tonsil and he was confident that those were the tumors they were looking for he didn't remove any other tissue, specifically my lingual tonsil.  However, he said that since it turned out not to be in my palatine tonsil, there's a 10% chance it's actually in my lingual tonsil.  Those are the tonsils below the tongue in the front of the throat and are actually the ones I thought they were originally going to remove, but I had the names mixed up.

I asked him what about the chance that my body healed itself.  He said that's about a 10% chance, but he said it's entirely possible.  However they play the percentages and wouldn't rule that as a possibility until they've ruled out more probable possibilities.

I asked what do we do now?  He said that we let me completely heal from this surgery and in about four weeks we do an MRI scan of the area.  He said that's the most accurate scan for this but is still only about 60% accurate.  If that indicates a mass then we go in and take out the lingual tonsil.  If it doesn't show anything then we can still opt to take it out and have it sent to pathology and have them see there's any squamous cells in it.  That surgery will be similar to my palatine tonsil removal but will only take about 45 minutes and will still require an over night stay.

Since they didn't find a primary site they can't do radiation and chemotherapy because they don't have  anything to target.   So that's off the table.  My other option includes not doing anything but wait, scheduling regular visits/scans, to see if it turn's up somewhere.  He said the tonsils, which are similar to lymph nodes, form a circular system in your mouth and are all interconnected.  He said if it turns up he believes it's going to be somewhere in that system.

I'm not 100% sure what to do at this point.  I'm kind of leaning to the MRI scan and lingual tonsil removal.  The doctor didn't give me the impression that the wait and see plan was a good idea.  I'm also not looking forward to another tonsillectomy, but if it answers questions then I'd be willing to go through it again.  I'll need to gain some weight back first.

I think I need to do some more research on the actinomycosis they found in my tonsil and what that could mean.  Perhaps I need a second or third opinion on these results.  I may run them by my previous ENT and seek a consult from one at UCLA.  Their ENT and cancer departments are ranked in the top five in the U.S.

In the back of my mind I keep thinking how wonderful it would be if I did beat this with the lifestyle changes I've made since being diagnosed.  I keep that as a possibility of hope, but I remain prudent and want to be thorough in my thought process.

So, kind of mixed news.  On one end of the spectrum I may be cured.  On the other end it may just be hiding somewhere.  I'm really looking forward to getting off this liquid/soft food diet.  Not to mack down on burgers and fries, but to get back on my anti-cancer diet.  Actually, a burger sounds pretty good too.

Surgery: Tonsil and Lymph Node Removal

I went in for surgery Monday.  They started around 1:30 PM and ended around 5:30 PM.  I didn't get to speak with my ENT that performed the surgery afterward but I spoke with a resident doctor.  He said the surgery went as expected. He said they were very aggressive, more so than a normal tonsillectomy, removing all the tonsils on the right side to make sure they get all of the cancer.  Feels like they drove a bus down my throat.  He said they also removed all the lymph nodes in the right side of my neck.  The pathologist on premises didn't find squamous cells in the slice of tumor he took but he's 90%+ sure that they will when they send the tissue to the lab. That will be in about a week.

The off-site pathologist will go through the tonsil tissue and each one my lymph nodes under a microscope to determine the direction of any future treatment. It should take about a week until I get the results.

I was told that there was some risk of nerve damage to the right side of my jaw and right shoulder but those areas weren't effected.  I did notice, while I was putting on my shirt to check out of the surgical center, that my right ear was numb.  So I guess if you're going to have something to go numb the ear would be the best case scenario.  You don't have to move it and you don't use it to feel things.

At around 2:00 AM that night I was up and about walking the halls a bit.  The nurses said walking its good because it prevents blood clots.  So I continued to walk every few hours.

Throat is expectedly sore so I'm on a liquid diet for now. Pain level is low though it's difficult, uncomfortable, for me to speak.  I think because they took out so much tonsil tissue.  I'm able to drink and eat (jello, sherbet) a bit. It's more awkward than painful.  I'll be on this diet for about a week then I'll move to a soft food diet.  Oatmeal, spaghetti, mashed potatoes, etc.

I'm on antibiotics, hydrocodone pain killer and Tylenol.  I can't take the hydrocodone pain killer during the day because it puts me to sleep, so I'm only using it at night which helps me sleep.  It also burns when going down so I'm chasing it with aloe water which feels really good.  I'm taking children's Tylenol because it comes in a suspension and is easier to swallow than pills.  I'm just adjusting the dosage for an adult.  It also doesn't put me to sleep and doesn't thin my blood so if I do start bleeding in my throat it will hopefully stop faster.  And the Antibiotics are obviously to prevent any infection from creeping in.

I'm home now and trying to adjust to the medication schedule, sleeping and taking it easy.  I'm not supposed to lift more than ten pound to prevent sutures in my neck from popping open so I'm constantly having to remind myself not to do or lift things that I usually do everyday without thinking.