Monday, June 15, 2015

"Probably Nothing" . . .

Last Thursday, June 11th, I went for my annual CT scan and cancer check-up. It’s been 11 years since I was first diagnosed and operated on. I used to dwell on cancer a lot more in the early years, especially the first five. Then, over time, I thought about it less and less and only when I needed to make my appointments. My CT scans came out fine again this year, and there was immediate relief. No change and no new findings are the best news you can get. But then my doctor follows up with a little physical exam. Usually there is nothing remarkable and our visit is concluded. This time that was not the case.

This time she found that on the left side of my rear jaw the salivary gland (the parotid) was slightly swollen compared to the right side. She didn’t feel any lumps and said, “It’s probably nothing.” For most people, that phrase might be very comforting, but for cancer patients it sounds the alarm. After all, we have heard that line before. When you first go to see the doctor and they haven’t run any tests, they don’t want to frighten you with all the negative possibilities running through their heads, so they say, “It’s probably nothing, but we will want to run some tests.” Several times after that, when little spots showed up on my lungs or liver I would hear, “It’s probably nothing, but we will retest you in three months or six months to see if there are any changes.” Even when those tests come out fine, you’ve still gone through all the “what ifs.” You wonder why there are new spots, what could they be, and then you pray for good results. The good results that allow you to resume your daily life and not have to think about this for another year.

So my doctor, who I love, seems a little perplexed by her findings. I can see the wheels spin in her head as she searches for answers, but none are forthcoming. As she tries to reassure me that this is probably her tendency to be overly cautious and that I shouldn’t worry, she mentions she may want to have the area tested. She isn’t sure what would be the best test, a CT scan or ultrasound. In the end, she says she will consult with a colleague about it, she may just have me return to see her in two months. I have to call her today to see what her final decision is in exploring what is “probably nothing.” Meanwhile, my dormant paranoia has awaken with this turn or events.

And, since Thursday, when I left her office, this minor swelling is all I can think about. It’s barely noticeable. I didn’t see it when I looked in the mirror before. I don’t feel anything, no discomfort. Now I can see it. I study my face to see if it’s changed or gotten bigger. I look it up online, which is the worse thing you can do. Every cause possible is listed, none of them say “probably nothing.” It’s always something.

No matter if you are 5 years, 10 years 15 years or more “cancer free,” you are never really free of cancer. The thought of it possibly returning haunts you. After all, no one can tell you why you got it in the first place. It’s unpredictable. And the truth is once you have had cancer, you are at a higher risk for other forms of cancer.

So, I will call my doctor this afternoon to see what she has decided to do. She has decided on the ultrasound.

UPDATE: June 19th, went for the ultrasound hoping to be done with this year's round of tests. The technician spent 15 to 20 minutes scaning my neck and I was getting a bad feeling. Of course she is not allowed to tell me anything, a doctor has to interpret the results. But then she says, I'll be back, I'm going to get the doctor. Well that can't be good. The doctor arrives within 5 minutes, that seems like an eternity. She repeats the test. She asks when I noticed the slight swelling on the left side of my face. I tell her I didn't, I only noticed it last week after my doctor saw it and wanted to check it out. And where is the swelling she asks (so did the techician). The swelling is very slight and hard to see, so I place my hand in the area. She proceeds to scan the area over and over. Finally, she looks at me and says she sees something, but she can't say what it is. The results are inconclusive, but she will study the images again and write her report. The best she can tell me is that I will probably have to go and get a CT scan of the area. That will undoubtedly be her recommendation to my doctor. I can feel the anxiety building up in me already. That's not what I wanted to hear. I get a little emotional. Neither the doctor nor technician want to deal with that, they are busy and maybe behind schedule. Now I have to wait for my doctor to call and tell me more or less the same bit of news. I don't think she will tell me it's probably nothing this time. This time there is something, we just don't know what it is yet.

In the meantime, while I wait for my doctor to call, I am breaking the doctor patient cardinal rule of not doing research on the internet. What else can I do while I am sitting here?  So I look up everything on salivary glands, untrasound tests, swelling of the parotid gland. What I learned is the salivary glands do get tumors, most of them turn out to benign. Reassuring, but I have a history of cancer. Ultrasound tests are supposed to pick up on tumors. There was definitiely something there, but my test was inconclusive. Does that mean it's not a tumor? I also learned that salivary glands can develop stones, like the kidneys. Ultrasound tests do not idenify calcifications. Could that be what the doctor saw but couldn't diagnosis from the test? Who knows? I'm just twiddling my thumbs waiting for the call to set the appointment for the CT Scan.

UPDATE #2 - Monday, June 22nd. Spoke to my doctor about the ultrasound being inconclusive. There is something there that's 3/4 of an inch big. She says it still could be nothing, but she is sending me for an MRI on Wednesday, June 24th. I guess we are pulling out the big guns since we skipped over the CT scan. The MRI imaging gives 3D pictures so hopefully we will know how to proceed next. If it's something requiring a closer look, she will send me to a specialist, probably a ENT onologist.  Here we go again. Thank God my doctor is thorough and cautious. No one else has been able to see this slight swelling without me pointing it out. If anything she caught it early.

UPDATE #3 I went for my MRI on Wednesday, June 24th and promptly called the doctor's office on Thursday afternoon for the results. I didn't get a call back so I waited till Friday afternoon and placed another call. My call was not returned. Now, I know I have to face the weekend with anxiety and have to hold it together until I can speak to the doctor on Monday. I have refrained from doing internet searches and tried to distract myself with hobbies and keeping busy. Sometimes it's hard to breathe. I hate waiting. I have no choice. It's finally Monday and I'm hoping to get a call in the morning. Nothing. By three in the afternoon I am getting antsy and call again. The secretary tells me the doctor is out of the country until next Monday and she will try to have the covering doctor call me with the results. I'm stunned and in disbelief. I don't know what to think. I don't know what to do except to wait for a stranger, a doctor I don't even know, to call me and explain my test results. I have convinced myself it's something serious and want to move forward, but I have to wait. I'm exhausted. I'm worried. I'm scared.

UPDATE #4 Thursday, July 1st- Just got off the phone with the Doctor's assistant who emailed the doctor concerning my MRI test results. The doctor said there is a tumor that is probably benign, close to or on the carotid artery and/or facial nerve. She is communicating with a specialist who is reviewing the tests. We'll see what they decide soon enough. I wish the results were posted so now I can read exactly what the location is. This news was supposed to put my mind at ease.
UPDATE #5 Friday, July 3rd my MRI results were posted online and I printed them. I didn't read them because I was afraid of what I might see. Instead my husand, who understands very little aboutmedical terms, skimmed the document and looked up something he saw in the conclusion section. He tells me they think the mass is benign. I give in a read the report. It does sound hopeful. I want to talk to my doctor about how to proceed next, but have to wait till Monday when she returns from vacation. On Tuesday, July 7th, I call my doctor's office to ask how we will proceed based on the test results. The mass is located between the internal and external carotid arteries and I know enough to know the location is not good. The secretary tells me she hasn't gotten back to me because the specialist is on vacation this week. My reaction internally was distressed, but I kept my wits about me and asked if we can at least make an appointment with the specialist for when he returns. She says yes and later gives an appointment for July 16th. 

On July 16th I am finally called in for the appointment I have been waiting for for 5 weeks. The doctor comes in and tells me I have something that is very rare. Eleven years ago I was told the exact same thing, another very rare condtion. How lucky can one person be? Two very rare conditions in one life time. He explains that the problem with the location is not so much that it's between the carotid arteries but that there are two nerves in that location, one that controls the tongue and the other the voice. Any surgery would be risky and the risks would not outweigh the benefits at this time. This mass is very slow growing and has probably been there 10 to 20 years already. His plan is to do a needle biopsy next week to make 100% sure it's benign and after that he will watch it by annual MRIs to see how it's progressing.  All in all this is probably good news considering the alternative. If it was cancer, it would have to be surgically removed and chances are there would be serious consequences to the nerves in the area. Plus, I would mostly like need radiation and I know that in that part of the body that would also be very bad. So I thank God for sparing me from the worst and I pray this mass grows extremely slowly and doesn't have to be dealt with for a very long time.

UPDATE #6 A few days after my appointment I get a call from the doctor's nurse. They can't schedule the appointment this week because the radiologist that my doctor wants to perform the biopsy is on vacation for two weeks. My appointment will be on Ausgust 5th. That makes a total of four weeks of doctor vacations that I have had to wait through to put this behind me for about 6 months until my next MRI. I guess it's good no one feels a sense of urgency about this except me.
August 5th I go in for the biopsy to confirm what the MRI indicated. The doctor is very nice and explains the procedure thoroughly. First I get one shot in the neck for local anesthisia to the outside area. Then she uses a fine needle to do the biopsy and removes some tissue. She checks with another doctor to see if she has enough of a sample or has to use a larger needle. When she comes back she says she can do two more fine needle passes to get addition tissue samples. So after four needles in the neck I am done and have to wait 5 days for the results. In the meantime I make some vacation plans of my own. I write my original oncologist a note updating her on my latest tests and she answers immediately and says she will call me as soon as the results are in. She calls on the 5th day to confirm the mass is benign and I will be followed for this condition by the neck specialist. However, the neck specialist never did call me with the results as he said he would. So for now I can put this all to rest and wait for testing in January to assess the situation or probably to see how much change, if any, occurred within a six month period.

August 14th we leave for a nice family vacation, no tests, no doctors, no needles! Bye!

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