A few weeks back, I hopped on a plane to go see a neuroendocrine expert. I had initially contacted this team of doctors in April or May and after reviewing my file, they agreed to see me. This was when I had my positive Octreoscan for tumor activity in the thymus, a negative CT scan of the same area, and could barely breathe or move. I was planning to go and see them in late June, but then I was encouraged to go and see Gandalf and he got me cleared for surgery locally and so I cancelled my out of town trip.
As way of background, here is where things stood at this point. I got dramatically better after thoracic surgery in June. I went from looking like this most days:
to looking like I had a mild, even sunburn in the neck and chest area. I stopped coughing altogether. I went from wheezing all of the time to the odd wheeze here and there. If I was exposed to a lot of stress, I would have pretty severe carcinoid syndrome symptoms – flushing, wheezing, diarrhea (and some hives too on a couple of occasions) – but if I stayed away from stress to the best of my abilities I was feeling pretty good. I also was able to stop taking daily anti-histamines. I couldn’t complete a full sentence without coughing or gasping for air unless I was on anti-histamines before. So, based on symptoms alone, it appeared that the surgery must have removed something bad – otherwise, I wouldn’t have improved! However, the surgeons never saw a tumor during the surgery and no tumor was identified by the pathologist either. This discrepancy between the improvement in my symptoms and the pathology report left me feeling that I should get a second opinion on the pathology. And although my symptoms had diminished, I was still flushing and I was still having GI issues. So I was very glad I had had the surgery, regardless of what the pathology report said, but I still needed to figure out where the rest of this NET was hiding.
I also had been in the middle of a work-up to figure out what was in my sacrum. I had been experiencing nocturnal pain in my sacrum for over a year and I found (what now has been confirmed by four doctors) masses in this area on an old MRI from last year. After thoracic surgery in June, I had a follow-up Octreoscan to locate any remaining neuroendocrine tumor activity and although the report was officially negative, there was some question marks by the radiologist about whether there was uptake in my liver in some of the scans. Equally concerning to me was that there appeared to be uptake low in my sacral/pelvic area, the same rough location that I already knew I had masses. This of course is not mentioned in the radiology report, but I can see it as clear as day.
So, with all of half-positive, half-negative information, I decide it is a good idea to go and get a second opinion on whether I have a serious problem on my hands or whether this is nothing to worry about. I contact this group of specialists and ask them if they are still willing to see me, after I send them an update on my situation post thymectomy. They tell me they will see me (they don’t see everyone) and we set up an appointment.
As I am staring out the window of the plane as I am about to touch down in another strange city, it hits me that this whole thing is so crazy. What has happened to my life? This whole world I am living in seems so bizarre. How do you go from being a normal healthy person to someone who – on more than one occasion and for more than one kind of tumor – has had to pack up and fly across the country in hopes some doctor can help you. Having to do this to see the Wizard when I discovered the first set of tumors, in my pituitary, was a surreal experience. But how can it be the case I am still doing this, two years later? I have turned into some sort of professional patient, with weird problems and doctors in a bunch of different cities. I still don’t understand how I got here. But I am here and I am trying very hard to make the best of it.
As usual, I go into this appointment ready to be turned away. The oncologist the team decides I should see starts out the same way everyone does these days: “I just reviewed your chart. You have had a terrible couple of years” followed by “your pathology was negative and your scans were read as normal.” So I calmly and patiently explain how my symptoms have changed and I show him pictures of my flushing before and after surgery. This of course catches his attention – he agrees that it appears something bad had been going on and something had improved after surgery. He asked me to sign a bunch of forms so his team could get my pathology shipped to them and have their own pathologist look at it. Excellent.
I also showed him pictures of the Octreoscan I just had and how it appeared the scan didn’t look normal to me (with my usual little jokes and caveats that yes, I realize it is annoying a patient is in your office trying to tell you that they think they know how to read an Octreoscan better than a radiologist). But he agreed, it didn’t look normal. He wasn’t an expert at looking at these things and wanted his radiologist to look at it. But he acknowledged that this happened regularly here – people came in with negative scans, according to the radiology report from their home hospital, that were in fact positive. So, they would look at the scans.
I also showed him the pictures of the MRI of my sacrum. This, he agreed immediately, was not normal. He asked me what the report said, and so we pulled it up so he could read it. He told me the report was so bizarre and so inconsistent with the actual MRI that the only logical explanation was that the wrong report was attached to the MRI. He told me he wanted an updated MRI of this area, so he ordered that, and some histamine labs. He also told me they would discuss my case at “tumor board” (their weekly meeting of the entire team of surgeons and oncologists to discuss new and/or complicated cases) and he told me the team would make a decision as to whether they could help me and what the next steps would be. That said, he anticipated a bone biopsy of one of these masses was the most likely next step.
After the meeting of the tumor board, I received a phone call from the oncologist’s nurse. They have decided they want me to complete a few more histamine tests and it is clear they are trying to figure out whether my flushing and other symptoms are coming from a tumor or mast cell disorders (which also cause flushing). My labs all come back normal – no sign of a mast cell disorder, but no biochemical evidence of a tumor either. This is not so surprising as these tumors don’t typically show up in labs unless they have spread to the liver. And all my labs for carcinoids have been negative to date – but lots of patients with known carcinoids have negative labs too. However, it certainly doesn’t help point any of us in a clear direction either. I ask the nurse if their radiologist has looked at my 2014 scan and my new Octreoscan. She skims the notes from the tumor board and tells me that they have. The MRI of my sacrum, she says, is abnormal. The Octreoscan, which was read as normal at home, is now also read as abnormal by their radiologist (I knew that scan wasn’t normal!!) but they are still collecting evidence (the new MRI) to try and determine the significance of the Octreoscan findings.
I came home and had the MRI locally. Usually getting the scans doesn’t stress me out so much, but this one stresses me out a lot. I have to fight not to cry in the MRI machine. I am worried. The MRI from 2014 shows some serious abnormalities, no one is questioning this now. I have had a pile of pain over the past year and pain in new spots down there now as well. And zero treatment for whatever these things are. What if the existing ones got bigger? What if they spread? I feel gripped with fear and I just want to know what they are NOW and for someone to tell me this can be fixed or managed NOW. But that is not going to happen. This whole business is going to continue to proceed at its slow, painful pace.
I wait 2-3 days after the MRI to drive over to the hospital and pick up a copy of the scan and the report. The report pisses me off. I am fully expecting this report to actually document the problem areas, as the whole reason it is ordered is to get an update on my sacral masses. And in fact, this information is in the history of the radiologist’s report.
And then I keep reading through to the conclusion of the report.
What??? I pop the CD into my laptop to take a look at the images myself. Is it possible that my old report was correct but in fact it had been attached to the wrong set of images as the oncologist pondered? No. In fact, that is not what has happened. Here was the concerning area we all saw on my 2014 MRI.
And here, is the updated MRI (click on the images to enlarge them):
The picture on the right is exactly the same masses I had last year! Exactly the same! I become filled with a black rage. How can this happen? I have pain. I have four doctors that have looked at the images with me saying, without a doubt, there are masses in my sacrum. I have a history spelled out by the radiologist saying the sacrum had masses last year. I can find this image in about 30 seconds. And yet my MRI is read as normal AGAIN. And I see new spots, including the spot on the lower left corner of the picture on the left. The reason I knew to look in this area on the MRI is BECAUSE I HAVE PAIN HERE. And you see the same thing that you see in my sacrum: something that looks like a black circle in the pelvic bone. I locate several other areas that look like this, black circles in the bone, in my vertebrae, in my pelvis. And then I stop looking at the MRI. I am angry and I am scared.
And you should be scared too. If I had not been a patient that went so far as to study up on MRI imaging of bones, look at my MRIs and take pictures of the images in to more than one doctor, what would be happening to me? Imagine you had an MRI last year that was normal and because you still had pain this year, your doctor ordered another one and it was also negative? A few years ago, I would have said “Phew, there is nothing seriously wrong. It must be arthritis and a bulging disc. I can take meds and physio for that.” Now, I know better. I know if the conclusion doesn’t make sense when compared to the symptoms, I can’t just trust what I am being told. If I hadn’t looked at the images myself, I would have NO idea something was terribly wrong. I would NOT have gone across the country to get a second opinion. I STILL have no confirmation of what these things are.
It is frightening to think about the possibility that medicine is not black and white. That doctors don’t always get it right. That mistakes aren’t just made in rare cases but they are made all the time. You could think that what is happening to me is exceptionally bad luck. But I have heard enough patient stories at this point to know that this just isn’t true. It frightens me and it should frighten you too. I want to frighten you so that when you end up in this situation you remember my story and you don’t stick your head in the sand. If this happened to me, it can happen to you. It happens a lot.
This is why when a radiology or pathology report is negative these days, and it doesn’t match my symptoms, I don’t believe it anymore. I am put in a situation where I have to question EVERYTHING that doesn’t make sense. I hate living like this. There is nothing more I would love to do right now than hand all of this off to one doctor who is going to figure everything out and take this pressure off me. But that is not reality. No doctor can or will do this for you. I don’t feel I am qualified to be in charge of this complicated, horrific mess that is my body. I am not a doctor. This shit is rare and subtle and scary. And there is no one manning the ship yet.
7 thoughts on “On The Road Again”
Keep fighting, even simple carcinoids need to advocate. A NET/MEN expert would be good to get, easier said than done I suspect. I really wish I could help more. Ronny
Actually Ronny, you and many others already help A LOT. I am in the midst of getting the MEN stuff sorted out now. Stay tuned 🙂
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I don’t know if you have updated this but I’m so glad I came across this. My mri after my spine surgery showed some masses like this and I was told they were root nerve cysts. So I accepted that and went on. I had surgery in 2010, it was a failed fusion at my L5-S1. I am in terrible pain. And now it’s spreading to my hips and pelvis. I had a new mri of my spine and pelvis done a few days ago and those masses from 2010 are now doubled in size and have a few more in the area. They are also on my sacrum/ tailbone area. You story has definitely scared me and I will be addressing this with all my doctors. I hope you are doing well.
Sarah, I really hope you get this figured out. Please feel free to email me if I can help. I hope your doctors are taking you seriously.
You are such a strong woman. You will find someone and get the care you need – just hold on.
Love you and wishing you so many good things.
Love you too, Jo
Can you please email me