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.
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Hi Louis. I'm sure you've already heard this, but hang in there, you're going to get through this. I'm glad to know it should be next week sometime when you get the results of the MRI.
It seems that it's really common for people to look back on treatment and wish that things had been done differently, as far as their care; things coulda, shoulda, woulda been done differently, like you said. It's really unfortunate that that's the way it often is with various doctors. You can learn from what's happened and do things different in the future, with regard to your cancer treatment and anything else in yours and your family's lives. I guess that's a way to look at it in a positive way? Just take what's happened and move forward, striving to do better with the knowledge that you now have.
From what I've heard and been told myself about MRIs, it's really easy for a patient to misinterpret results. So I'm hoping that you won't focus on what you saw in the scans and stress about it. I'm not sure what you're hoping they'll find (something or nothing), but I'm anxiously awaiting the results from the dr.
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