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. ;)

Measure Twice, Cut Once

As I've mentioned previously I've been pretty frustrated with my treatment so far.  It's been over seven weeks since my surgery and the pain in my throat around and below my tongue has been getting worse while the pain in the area that my tonsils were removed from has practically disappeared.  This has been leading me to suspect that the cancer is in or near my lingual tonsil.

Today I scheduled an appointment with my second ENT for Dec. 1st, earliest availability.  I also called my first ENT to hopefully get in to see him sooner to maybe go over things with him and have him examine me again to hopefully get some answers.  He's booked out even further.  I asked one of his staff if she could ask him to confirm where he saw a nodule/tag when he first scoped me.  I'm not sure if it was in my Palatine tonsil or further down.  He's been pretty good at calling me in the past so I'm hoping he'll call me tomorrow.

So then I decided to look over my PET and CT scan images.  What I noticed shocked me.  From the images it was pretty obvious to me that the tumor was not in the area of my Palatine tonsil like the radiologists report indicated, but in or near my lingual tonsil.  It's pretty clear, the images show the tongue and the "hotspot" is below it right next to my matasticized lymph node.

I immediately emailed my ENT and Oncologist a note with a copy of the image.  I haven't heard back from my Oncologist yet by my ENTs MA emailed me back and said that the doctor would have to see the image CDs himself to make a determination.  What the what!!! They told me way back in September that they would be obtaining the image CDs themselves and I signed paperwork giving them permission to receive copies.  Now they're saying they never got them!  Why wasn't I informed?  I would have happily made copies and personally delivered them.  Why would he have performed the surgery without confirming the radiologists findings? WTF!? Ever hear of "measure twice, cut once"?

If I am correct in my suspicions, that the images indicate the tumor is in my Lingual tonsil and not my Palatine, that the radiologist screwed up the report, I will seriously consider pursuing a malpractice lawsuit.  For having undergone the wrong surgery as well as the pain and suffering that accompanied recovery, for delaying my treatment/cure, distress and anxiety for having undergone a procedure in which nothing was found, the pain and anxiety I'm feeling now which would have been prevented had I had the correct procedure performed instead.

Just trying to get my doctors to look at the images and get confirmation.  I just want to be cured of this cancer.  Just do your due diligence and do your effing job.  Find it, kill it, and give me my life back.

I'm gonna contact my radiation oncologist tomorrow too just to see if he ever got the CDs and see if he needs me to bring him by copies.

At this point, if it is in my lingual tonsil, not sure what treatment I'll pursue.  I believe my ENT said it's a 45 minute surgery.  If that's the case I'll probably go that route.  Not looking forward to getting cut up, again.  Will consider radiation/chemo too.  I just wish I could get some answers so I can move forward with treatment.

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.

Post Tonsillectomy and Neck Di-section Surgery - One Month Later

Well, it's been four weeks after my surgery, the time my ENT said it would take for me to heal from the surgery.  However, I think his definition of healed is different than what I had in mind.  I now believe his definition was that would be the time it took for my wounds to be healed to the point that they are fully closed and I would be no longer be at risk of them reopening.  In that sense, mission accomplished.  However I am far from "healed" in the sense that I am back to normal.

I still have numbness running from my ear down to my collar bone, but I feel this has improve incrementally over the last week or so.  It started around the 22nd of October when, for a couple days, I felt lightening bolts travel through my neck a few times.  Lightening bolts is probably too powerful a word.  They were more like small electrical jolts.  None-the-less that seemed to be the beginning of increased feeling through this area.  The mixed areas of numbness and feeling have made shaving and moving my neck feel very strange.  This is just a mere annoyance I believe will go away with time.

The more disconcerting thing is going on in my mouth.  Although my voice has returned for the most part I can tell my voice has changed.  If I talk loud enough it sounds, at least to me, like I have a speech impediment.  It sounds slurred or like when a deaf person speaks though not as pronounced.

Drinking is also another problem.  I can no longer take a continuous drink.  I have to take small sips and carefully swallow and always in a fully upright position otherwise it goes straight up my sinuses.  Food is not as much of a problem but occasionally there's an area that seems to capture food and I can feel it in the back of my mouth just sitting there stuck.  Typically a drink is sufficient to free it.

Another thing that I've noticed that's changed is my smile.  It looks mechanical and forced, which I guess it kinda is since part of my jaw is still numb so at least I have hope that it will return back to normal when the numbness subsides.

Finally, whenever I sneeze, cough or yawn it feels like the back of my throat is tearing open again.  I try to suppress these actions to reduce the pain, but as much as I try they always hurt.

These all may seem like little things; maybe they are.  I think these annoyances would have been easier to accept if they had found the cancer in my tonsil and successfully removed it.  Then at least I would have had a net gain.  However, since they didn't find the cancer there I now have to face the fact that I may lose more of who I am, suffer more discomfort and lose more functionality in order to find the cancer that may or may not be there anymore.  How much more of my body will have to be carved up to be cured?

I saw my radiation oncologist a couple weeks back.  He said he was reluctant to proceed with any radiation therapy unless ordered by my ENT.  This struck me as kind of odd since he seemed more concerned about stepping on my ENT's toes rather than doing what was in my best interest.

Then I saw my oncologist this week and this concerned him as well.  He thought each doctor should form their own opinion as to which is the best course of treatment with the best interest of the patient at the forefront without regards as to whether will offend the other doctors.  Up until this point they were all in agreement, but now that the primary site wasn't where it was suspected there's some disagreement as to how to proceed.

They all still agree to do the MRI.  If the MRI shows something, fine, then we'll have a definite direction.  However both my ENT and oncologist are skeptical the MRI will find anything.

If it doesn't, my ENT wants to play the wait and monitor game where I'll go in for scans at regular intervals to see if it turns up anywhere.  My oncologist thinks that if the MRI is negative that I should go ahead with radiation to the whole region.  The only problem with that is that my radiation oncologist said that I could lose all function of my saliva glands.  As a result my mouth will be constantly dry and I'll have to carry water on me at all times to hydrate my mouth.  That does not sound fun.

It's amazing the little things we take for granted like being able to salivate but realize how important they are when they're on the table to be taken away.  Kind of like Sophie's Choice but with your body.

So, as far as this is concerned, I'm waiting on my MRI.  That is scheduled for November 13th.  I had it scheduled for tomorrow, but that's a whole other story I'll save for another post tentatively titled, "My life as a cash cow."