Unexpected results…again (when “benign” doesn’t mean benign).

A doctor from the ER hospital called yesterday afternoon with Alec’s liver biopsy results. They did two biopsies; one of the nodule that was removed from his liver and one on a blood clot that was attached to the omentum (best I can understand, this is connective tissue that stores fat and is attached to the liver). She told me both test results were…benign. Before you get excited (as I cautiously did), during what I was hoping would be a superfluous consultation with the oncologist today (who specializes in this type of cancer) she said and I quote, “I don’t believe the results.” I knew last night I should not get too happy, but I admit I couldn’t help feeling cautiously optimistic about this news. It seemed unlikely there would be three wrong benign reports and the ICU doctor I spoke with yesterday agreed that the “benign hematoma” result of last month was probably correct in light of the fact that these two news ones both came back as benign. Obviously it made me feel better to think the initial result a month and a half ago was not wrong.

So the ICU doctor told me this was good news but to keep my appt. today with the oncologist to discuss a monitoring plan for Alec’s liver (monthly ultrasounds, etc.). When she walked in, the first thing I asked the oncologist (aka Dr. Killjoy) was whether she had seen the biopsy results. She replied, “Yes -and I don’t believe them.” As my face fell (definitely what I did not want to hear), she apologized repeatedly for “bursting my bubble,” but said she has seen enough of these false benign results to not believe them. Damn. Has seen “enough of”… in other words, she has seen this multiple times. She also said it did not make sense for there to be another mass in his liver – benign hematomas do no act that way. They do not spread. She said it is very likely the biopsy missed the cancer. I had no idea that biopsies were so unreliable and none of the other doctors I spoke with made it sound like this was the case. However, the oncologist unfortunately has had a ton of experience with exactly this. She even spent a year of her residency training as a pathologist. She was confident and definitely had the experience and knowledge to back up her reasoning, whereas the doctor last night who conveyed the biopsy results simply said, “Alec is a little bit of a mystery.” I wanted to cling to that of course (yes, Alec IS a mystery!), but the oncologist, unfortunately, did not find it so mysterious.

So, after we talked for about an hour, she said she wanted to speak to the pathologist (person who did the biopsies) directly about what he is seeing in the sample, and she also wanted to talk to the two surgeons about what exactly they observed during his surgeries. She talked to me about chemo and she really does seem to be an expert with this type of cancer (hemangiosarcoma – if it is that). She is actively researching and working with some new drug protocols and is in the process of publishing her findings, which is encouraging. If this is what it must be, she seems like an excellent person to work with, a real expert in the field. But she does not want to start giving him chemo drugs (of course nor would I!) until we know what we are dealing with and at this time that is still unclear. She said it could be a”low grade” hemangiosarcoma, which is why it is not showing up on the biopsy results. She said it could even be a different type of cancer. She also said basically it does not matter even if it was something “benign,” because it is acting like a cancer, in other words spreading, and she does not like the nodules throughout his liver – especially if they weren’t there at the time of his splenectomy (which, according to the surgeon, they weren’t. She said his liver appeared healthy when they removed his spleen. But who knows? There was also a lot of blood from the ruptured mass.).

I definitely had a more positive outlook (briefly) last night after talking with the ICU doctor, who said they removed the entire liver nodule (I thought they only got part) and that it was pretty small (an inch). She said the little nodules throughout his liver were really small, the size of pencil erasers, and were not bleeding. She also said she did not expect them to bleed. This made me hopeful but again, this was not the oncologist’s opinion. The oncologist is afraid they will bleed, that another mass will develop, etc. And we can’t put him through another surgery. It is confusing talking to all these doctors. When the surgeon called during surgery Friday night, she made it sound a lot worse than the doctor who called yesterday (saying the little nodules were bleeding and they could not remove the entire mass, etc.). Of course, the surgeon was the one actually in there observing and the doctor who called yesterday was just reading the report. But didn’t the surgeon make that report? It is confusing having seen a different doctor almost every time we have been to the ER hospital, but in a way that’s good because I am getting different opinions and perspectives. Although it is confusing it gives me more pieces of information to try to fit together than if I were just hearing one person’s opinion. Not that this makes my job any easier (it is so hard to evaluate this sometimes contradictory information), but I think it is probably best in the long run to have multiple input just to avoid the potential of dealing with only one person who may be wrong or incompetent or misinformed. Trying to put a positive spin on it, I guess.

Right now I am waiting for the oncologist to call back after talking with the pathologist and the surgeons. Then we will discuss options. As much as it hurts to know they are (or could be) wrong, I am glad there is someone there now to question these repeated benign results. I don’t want to lose any more time. And knowing it could come back three times that way makes me feel slightly better about not pushing last month for them to repeat the test. Honestly, that did not even cross my mind at the time – I really believed the result – but you know how hindsight is.

Speaking of different perspectives, I took Alec to a holistic vet yesterday and he prescribed eight different herbs and supplements. I walked out of there with a small pharmacy; a month or so supply plus the office visit cost me a thousand dollars! But I was anxious to get anything that might help (as long as it will not harm) into Alec’s system right away and, again, did not want to lose any more time. However, today during my consult with the oncologist, out of the eight herbs/supplements, she recommended only three. She is not opposed to using eastern medicine; she actually works in conjunction with a different holistic vet and seemed very knowledgeable about Chinese herbs and supplements. She said in fact many chemo drugs originated as herbs, which I did not know. Anyway, she had convincing reasons why this or that one would not be effective (based on research rather than anecdotal evidence) and she seemed trustworthy to me, mostly because she is not closed-minded on the whole subject and seemed to be current with the latest studies in both conventional and alternative medicine. So, too bad I bought all this expensive stuff! But I wanted Ali seen as soon as possible and the holistic vet appt. came open before the oncologist, whose first available slot was today.

Thank you for all the support. These last several days have been very difficult, as you can imagine, but I guess I am cautiously encouraged by the biopsy results…even if they are false, I hope it means the cancer is less developed than one that would readily show up. I know I am reaching, but what more do I have now?? If you can spare a positive thought, I am hoping and praying that Alec stays stable and that his insides are healing and healthy. Thank you so much. I believe in you, Ali!


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3 responses to “Unexpected results…again (when “benign” doesn’t mean benign).

  1. April

    I am repeating: "Healing and healthy insides — I believe in you, Ali!" Sending my love to you both.

  2. Kera

    Sending hugs and prayers to you and Ali, Nicole. You are in my thoughts. Just think how wonderful it is that you didn't listen to that doctor who recommended you let Ali go while he was still under anaesthesia! You're doing all the right things. Glad you found a doctor you can trust.

  3. cara h

    seems like to me your instincts have been great. i support you from afar. i am so happy ali has you and vice versa. healing and loving thoughts from victoria!!! thanks for keeping us in the loop. i know this is difficult to process and maybe not easy to write about. LOVE!!!

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