Wednesday, June 1, 2011
My liver biopsy is scheduled for June 9th. I plan to celebrate with a bottle of nice chianti and some fava beans.
The outpouring of love and well-wishes about my scary new condition has been overwhelming, and I appreciate it more than I can say.
Understandably, a lot of people seem to think that this upcoming biopsy might be happening to determine if it is cancer, rather than to figure out how to treat it. People keep wishing me benign results.
I'm here to dash your dreams and lead you out of the land of denial.
While hearing a benign diagnosis would be wonderful - so wonderful I would jump up and down in excitement and quite possibly even film it for your entertainment, it really doesn't help me to hope for something that is very likely not to be true.
If it turns out to be benign, then fantastic. I'm reprieved! Humiliating video forthcoming.
But, I can't get my hopes up for that because then they'll be dashed again - and there isn't a dash much harder than the one where you find out you have a fatal disease.
The truth is, my brain isn't capable of living in the land of denial. There is no way I can ignore logic, probability and what is in front of my eyes for fantasy.
There are reasons why I don't expect this to be anything but a metastatic event, and I'll share them with you.
1. I'm symptomatic. I sleep a lot (as I did when I had active cancer the last time). I have pain in the lower back and side, but I have sharp twinges in the upper right now. I'm bloated like a pregnant woman, and sometimes nauseated - also, I guess, like a pregnant woman, you poor thing. I can still eat but feel full all the time, not like I've eaten too much but like there is pressure in my stomach. My night sweats have increased and I'm just dripping, sopping, disgustingly wet all night.
2. To give me hope, many people point out that they also had a CT that showed lesions on the liver that turned out benign. But, these people forget that that was their first CT ever. Some also forget they never had cancer. We all have funny stuff going on inside our bodies and things growing where they shouldn't, especially when we get older.
It's when new stuff happens in a cancer patient that it's concerning.
I stopped herceptin December 2nd. I had an abdominal CT December 10th, which showed nothing on the liver. I had another abdominal CT May 16, which showed these two large lesions.
That tells us something.
The most common benign liver lesions are cysts and hemangiomas. Typically, liver cysts don't grow or change appreciably over time and they don't cause symptoms. Most hemangiomas also don't have a quick growth pattern - although some can. When they suspect a hemangioma, they usually don't do a biopsy because of the bleeding risk. Both of these lesion types are also usually diagnosable on CT, especially when they are larger.
You know I can't stay away from Dr. Google, and I found this on a radiology website,
"When multiple new hepatic lesions are encountered on a CT in a patient with a known malignancy, a presumptive diagnosis of liver metastases can be made."
That sounds pretty definitive, doesn't it?
They aren't done yet though.
"multiple new lesions, some of which are larger than 2 cm in diameter are diagnostic of
metastatic disease with a high confidence level.
Still don't believe me?
"In a patient with a malignancy that is known to metastasize to the liver, the interval development of multiple variable size low density hepatic lesions is diagnostic of metastatic disease"
Remember what my path report said?
Interval development of two ill-defined (hypodense) hepatic lesions measuring 2.4 and 2.0 cm concerning for metastatic foci.
Believe me now?
So, why are they doing a biopsy?
"Definitive diagnosis of a liver lesion is required only when treatment will be modified if a diagnosis is made."
My treatment at this point is only tamoxifen, which I guess might not be working as planned, so we definitely have to modify it. Breast cancers have been known to change histology as they metastasize, and so maybe we need to make sure it's HER2+ still, ER+ etc., to determine the course of treatment.
3. My doctor's words were not encouraging. No, "It's probably nothing but let's be certain." Or, "It is mostly likely a cyst but we have to check." He said, "Given your history, we have to assume that it's cancer." No, he didn't come right out and say it was definitively cancer, which some people are waiting for. And, maybe that is what I should hang my hopes on, and maybe that is what you would hang your hopes on. (Lots of hanging hopes around here!)
But, I can't. I am hanging my hat (hah! fooled you!) on his saying that if that was all there was - those two lesions - I was still "salvageable." That seems more realistic. He said, "Lets do a biopsy and then I'll set you up with a PET." The PET is to see where else it might be. He also told me that having only two lesions was good, that if my liver would have been covered with them than the prognosis would be much worse. He also wanted to rush the biopsy through. (In their world rush is two weeks).
He was talking to me as if I already had metastatic cancer.
I try not to read too much into body language and expressions of doctors and medical personnel. We women like to do that - we try to read the faces of our scanning technicians, we hang on every twitch of a finger and examine it for meaning, which is probably pretty foolish when you are dealing with an oncologist who has seen it all. But I got the definite feeling that he thought I had cancer again.
It was just a feeling - meaningless. But, because of all the things I mentioned above: my symptoms, the odds, my physician's phrasing, I am going to have to assume that I have metastatic cancer. This biopsy, I believe, is not diagnostic. It is to determine the cancer's histology.
What you do and believe is up to you.
Of course, I am not a doctor and have absolutely no idea about what else could be happening with my liver - I am quite sure there are many of things that I have no clue about. I'm sure Dr. House could come up with dozens of alternative diagnoses, including, of course, sarcoidosis. Maybe there is some other very fast growing tumor that grows on the livers of HER2+ breast cancer patients.
But, I doubt it.
Of course, none of that means I have given up hope. Facing the probable truth doesn't mean you are giving up. It just means my hopes are placed appropriately - that it's found early enough to be treatable, that the treatment I get puts me back in remission, that my remission lasts a good long time, and that this TDM1 trial that everybody is talking about really is the miracle cure for HER2+ women, so when it inevitably does return, I'll have that in my arsenal, and maybe even something better down the line.
I know you want to see me jump up and down. Maybe you will.
But, I'm not buying any sneakers.
Don't forget to enter the contest for Aqua Delight. You only have until June 4th so don't delay. Tell your friends too - especially those doing chemo - healthy, pure water is good for everybody.
Posted by Ann aka ButDoctorIHatePink at 4:48 PM