This is mostly a vent/timeline thread for me, since I’ve never put all of this down together in one place and it’s still chaotic feeling. Maybe putting it all down in the order it happened will help me compartmentalize some of it.
October 2012 - I had an excruciatingly painful bump removed. It had been there for some time, but the icepick pain started during pregnancy. I tried to have it removed when my son was 4 months old, but was told not to bump it. I went to a different doctor when my son was 9 months old, and she removed it in office. Their sterile technique broke down when they couldn’t put the scalpel together, and another dr came in the room to snap the blade on without gloves. I should have stopped them and asked for a surgical referral after watching the scalpel being handled that way, but frankly, I couldn’t imagine waiting one more day with the pain, and I wanted it out right away since the pressure from the novacaine shots was intense. When I called the dr a few days later to ask to come in because it was massively infected, the office said to come in and bring a driver. I assumed they were going to do something to clean it up and maybe give me some twilight sedation, but the driver was needed because they’d just received my pathology report showing adenoid cystic carcinoma. I’d rather have driven myself home to be honest and feel a little ambushed and put on the spot in front of someone I didn’t really want knowing my diagnosis till I had processed it, but I see why they thought I should have a driver. They didn’t have much info for me since the dr is a PCP and wasn’t familiar with adenoid cystic, but they set up a referral to an oncologist. I did throw up in the doctor’s office, but a quick google showed some promising numbers about ACC so I figured it could be worse and went home to research. I found it’s much worse. It’s incurable, but slow till it metastasizes and then it tends to take off. It doesn’t spread locally but likes lungs, liver, and bones. It’s rare so there’s no financial incentive for pharmaceutical companies to research possible chemo drugs for it. I looked at my pathology report and saw my tumor was a mix of cribriform and tubular, two of the less aggressive forms, with the solid variety being the quickest and most aggressive. I figured at least that was good news. It also showed perineural invasion which is a poor prognostic factor and explained the pain. We ACC patients are never cancer free. There is no safe time zone. The ones who get to five years have no less risk of mets and recurrences than at five months. It comes back whenever, forever and we live with it over our heads till it finishes the job. I started dealing with some anxiety and called my PCP for a referral to a therapist.
The next week I saw an oncologist who said she’d seen a case of ACC in California and referred me to a surgical oncologist. She said the cancer was behaving aggressively and needed to be dealt with quickly, and stressed that it needed a good surgeon who really knew cancer but promised she was putting me in good hands. I talked to her about the bump on my parotid, where ACC usually likes to start, and asked if it should be biopsied. She said it was a terrible case of TMJ and I should see an oral surgeon, so I asked for a referral. The next day I showed up at the surgical onc’s office and waited in the exam room. When he came in, he looked through my chart, got a deer in the headlight look, and told me he was a breast cancer surgeon who didn’t have experience with my cancer and he’d refer me to a colleague.
Another week went by and I met with the new surgeon, a general surgeon. At this point I was feeling pretty panicky because the tumor had been sliced through by my PCP, not biopsied, and was still inflamed and infected and all I could think of was tumor spilling. The general surgeon said he’d seen a case when he was at UVA since it’s one of two ACC research centers in the U.S. He scheduled me for surgery for the next week.
In the meantime, I had a head CT and a pet scan as they were trying to find my primary since the location of my ACC was unheard of, although now, after joining the ACC patient group on Yahoo, I see that there is no normal for ACC, other than it’s final result. Within hours of having the pet scan, I had unrelenting pain in my lower right rib area. Since I’d been nauseated and vomiting on and off for the ten months since my son was born, I thought maybe my gallbladder, and not hormones readjusting like I’d suspected, was finally showing itself to be the problem. The Pet showed no metabolically active disease (red flag since it was known to be at the surgical site still), the head CT showed retention cysts and inflamed sinuses but no cancer. Now I know that ACC is too metabolically slow to register on pet scans, but at the time it was nice to think that the cancer wasn’t anywhere else. I also now know that many, many ACC patients have been told they have polyps or retention cysts only to have sinus surgery show ACC. It doesn’t look like most cancers on scans, and is usually undetected by mammogram and ultrasound. So now I’m thinking, “how do we even start to fight something so hard to monitor?” Not just hard to monitor, but also unknown to most doctors. I realized I have a ninja cancer. At least it’s a lazy ninja.
November 2012 - I went through the surgery with sentinel nodes also removed. I asked the surgeon what he thought of the parotid bump, and he said “dear lord, that’s a hideous case of TMJ!” He also said he’d get it very thoroughly checked just in case, and agreed I should see an oral surgeon. Even though he wasn’t an oncology surgeron, the general surgeon had clearly done a lot of research into ACC and was very up to date with his info, which was a nice feeling after too many “I don’t know’s”. The pathology came back and agreed that it was ACC. I was told the margins were clean, great news! The week after, I had my follow up with the oncologist who said I’d need radiation and she recommended proton beam. She said she was going on maternity leave and referred me to a different oncologist. The following week, I saw my PCP about the gallbladder pain since I had a positive Murphy’s sign and the pain had landed me in the ER one night. She ordered an ultrasound which looked normal. More good (?) news. The pain settled down to a persistent feeling of pressure over the next week, and remains the same today. Just constant, never ending pressure with occasional bouts of intense pain. I still didn’t have the referral to a therapist but was unable to sleep so I asked the PCP for something to help. Ambien was a miracle worker for me.
I saw the new oncologist at the end of November. I went in feeling hopeful that he’d help refer me to radiation and would be the right doctor to monitor me after treatment. He had the reputation of being the best oncologist in the area. When he came in the exam room, he looked at me and said, “What I want to know, is what are you doing here? I’m a medical oncologist… I treat with chemo. You have a cancer that doesn’t respond to chemo.” The rest of the appointment was short and unproductive. I left feeling stupid, degraded and with no referral for radiation and no idea what to do. After that appointment, I cried for the first time about the stupid cancer. I realized that nobody was going to help me through this. I don’t have a common cancer, or a trendy cancer, or a researched cancer. I have one that nobody wants anything to do with because they know I’ll just end up dead anyway.
It’s past my bedtime… will finish this up over the next week or so. Things spiraled so out of control with nobody managing my case after that point that just putting it down here makes me realize how easy it is for me to forget details. I need to keep a journal, but maybe having something here will make it easier for me to summarize everything for the new doctor in September… still playing musical doctors, insurance’s fault this time.
