“I’m going to be in a medical journal someday.”
“Yeah. Like for realsies.” Haha, I joke, but it actually might happen.
I was scheduled for a biopsy of my tumor a few days after the consult with my surgeon. I was scared out of my mind for the procedure, in addition to what the results might show. I did my best to hide my fear and put forth a facade of strength and calmness. Losing my composure was not going to help anyone, and I really felt the need to keep it together for everyone’s sake (including my own).
I wasn’t thrilled about the fact that I had to be awake for the procedure. I would have much preferred to have been knocked out cold. Apparently with the liver, there are too many arteries inside and vital organs surrounding it, and the patient needs to be conscious to hold his/her breath when the biopsy samples are being taken so that nothing important is punctured during the process.
Awesome. Couldn’t wait.
Per usual, they had a lot of trouble sedating me. This procedure was not a pleasant experience, but thankfully, it went smoothly. They ended up doing 4 ultrasound guided biopsies. The recovery afterwards wasn’t nearly as bad as I was expecting, either.
Waiting and wondering and fearing the worst for what your future may hold is the hardest part of it all. Your mind can go to some really dark places if you allow it to, but I tried my best to hang on to some hope and stay positive. I’ve seen and personally experienced the immense difference attitude can make in healing, recovery, and overcoming obstacles.
A nurse called me the following Monday morning to ask how I was doing after the procedure. She told me that the pathology report would be posted to my patient portal and then a doctor would be notified and call me to discuss the results and recommendations for next steps. She said that if I hadn’t heard by that Tuesday afternoon, I should follow up with them.
Monday dragged on so slowly. I kept checking the patient portal. No report. No phone call. Tuesday might have been the longest day ever. I was waiting impatiently- so anxious for my results. I called again and again with no success. Each time I called, I started to panic a little more. If the results weren’t indicating anything overly serious, why couldn’t someone just tell me? And why hadn’t they posted the pathology report to my patient portal?
I couldn’t take the helpless feeling or the waiting game any longer. In desperation, I eventually called the 24 hour number and got a doctor on the surgical team to talk to me after hours. He seemed rather annoyed with my persistence, but waiting on news like that is agonizing. I couldn’t function or think about anything else.
The doctor on the phone told me the results from the pathology testing: they had found no signs of malignancy!!! What a relief! We had all been worried sick. He wouldn’t tell me more- only that they believed this was in fact, consistent with a recurrent hemangioma, and that someone would be calling me the following day with additional information.
Wednesday came and went. My frustration continued to grow. At least I had some peace of mind in knowing they had detected no signs of cancer, but what were they going to do about this growing tumor? From the imaging, I could see that it had grown 1/2 an inch in a month! I called many times over the remainder of the week- always with the message that someone would call me back later that day, but no one ever called.
Weren’t they annoyed enough by my incessant calling to just talk to me? Clearly, I wasn’t going to stop calling until I had more answers. I went into the weekend feeling beyond disappointed and so completely lost. Were they avoiding me? Why wouldn’t someone take 2 minutes to just tell me what was going on? I do realize they are incredibly busy and work extremely long and hard hours, but this just wasn’t my typical experience in dealing with them. I started wondering if maybe they didn’t know what to do.
I called again this past Monday, and at long last, I made some progress. I was able to get another appointment scheduled with my surgeon for next week, and after really pressing for more information, the nurse informed me that because my case was so rare, the team of surgeons was still trying to determine what to recommend as far as treatment. Even knowing that little piece of information would have eased my mind. That would have been so much better than thinking they were just blowing me off.
So, exactly how rare was this? After hours of research, I came across 2 medical journals (from 1988 and 2012, respectively), and as of 2012, I found that there were only 5 documented cases of a recurrent hemangioma on the liver. WHAT?! Only 5 other cases?!?! No wonder my surgeon was so skeptical! I knew the chance of recurrence was rare, but I didn’t realize it was THAT rare. It would have been more likely for it to be almost anything but a hemangioma. What’s even more interesting (or perhaps shocking is a more fitting word) is that the first paper found that the average time between the initial treatment (surgical resection or radiation) and recurrence was 16 years, while the second paper found it was 14 years. Either way, it’s been just over 4 years for me.
This was all so overwhelming. My mind was flooded with questions, but how could anyone answer my questions if they had never seen a patient with a recurrent hemangioma? How could there only be a handful of people like me who had experienced this? What was the linking piece between all of us? What could be the cause? I now understood why my surgeon had ordered the biopsies, and why the surgical team had been taking so long to decide upon a course of action.
Next week, we will be discussing options for a second surgery, and I already have a whole page of questions I am hoping to get answered. I don’t know if anyone will be able provide the answers I’m seeking, but I’m really hoping for some solid medical advice by involving the right team of multi-disciplinary specialists. I also hope to have additional testing done and leave with a clear path forward.
My main goal has always been to identify the cause. I was unsuccessful with the first tumor, but will be extremely persistent this time around. All of the other cases with recurrent hemangiomas had no known cause. Each of the patients were significantly older than me (ages 49-64).
There will be patients who come after me that are faced with this. However few there may be, I hope my case can shed some light on this rare occurrence. If we can somehow determine the cause of mine, we might be able to prevent other patients from having to deal with a recurrence (including myself- I certainly have no desire to EVER go through this again). Conversely, could this just be some freak incident that has no cause? I don’t actually believe that, though. I’ll do whatever it takes to figure this out. I have to get to the bottom of this issue and uncover the underlying cause.
In closing, I’d like to say thank you from the bottom of my heart to all of you who have been praying ’round the clock and sending positive energy my way. Much love to all of you!!! Whatever happens, I do hope we can learn something valuable from this.