10. Inconclusive

That word! That damn word! We could not be more tired of hearing it. I’ve had yet another few weeks of inconclusive results, this time not to do with my heart, but with my liver.

During my very first CT, a large mass was seen in my left liver lobe, so my oncologist had me do an MRI so that we could better visualize the tumor. At that time, the mass was 7 cm x 4 cm, which is quite large, but based on the echogenicity (essentially the “brightness”) and the shape, the radiologist who read that report surmised that it was “focal nodular hyperplasia” (FNH), which is a benign tumor. My oncologist and a few others that she spoke to agreed that it looked to be a FNH. She also told me that in her entire career as a breast cancer specialist, she had never seen breast cancer metastasize to the liver to form a single focal tumor such as mine. Generally, if breast cancer metastasizes to the liver it shows up as multiple, small tumors spread over a diffuse portion of the organ. So, at that time we decided to move forward with chemotherapy and assume that the liver mass was benign, meaning that I was still considered Stage II. Fast forward to a few weeks ago when I had a repeat MRI of the mass to assess how things were looking. Turns out the mass has shrunk from 7 x 4 cm to 5 x 2 cm, which was alarming to both my oncologist and myself, as this means the mass may have decreased in size in response to chemotherapy (and hence, could be malignant). The other thing that it could have been is something called an adenoma, which is a rare but benign tumor that is hormone-responsive. If it were this, it may have decreased in size due to me being in forced menopause from the chemo and my estrogen levels tanking. So, after another meeting with my onc, we decided that a liver biopsy was now warranted (I had asked about a liver biopsy and PET scan when the mass was initially found, but I was told at that time that the MRI would give us a lot more information than a biopsy, so we held off).

Well, I had the biopsy two weeks ago, and after landing myself in the ER (thanks to my amazing friend Danni for driving me back to the hospital after fainting in her car and then sticking with me ALL day as they stabilized me), we got the results back and they read as follows: “The sections of liver demonstrate reactive features including a lobular mixed inflammatory component, glycogenated nuclei, features of early ballooning degeneration, and sinusoidal dilation. The findings are favored to be reactive and could be secondary to medication/treatment related changes. Alternatively, these findings may be seen adjacent to a mass or more worrisome process. Clinical and radiographic correlation is required.” They also confirmed that no signs of focal nodular hyperplasia or a hormone-responsive adenoma were noted. This part was a huge bummer, as I was really banking on it being a benign adenoma. Unfortunately, ’tis not the case.

What this all means is: the tissue is very angry about something, and what that something is, they don’t necessarily know for sure yet. It’s either a reaction to chemotherapy (which would mean the mass is malignant) and is “stunned” from the chemo, so not currently rapidly dividing and therefore not showing obvious signs of malignancy, or it may be that it is still one of a number of rare but benign adenomas. I met with my oncologist yesterday to discuss these results and get some more clarity.

Here is what she told me:

Based on the characteristics seen in the pathology report, the fact that the tumor was present prior to chemotherapy and then shrunk during chemotherapy, and the fact that they ruled out FNH or an obvious adenoma, she and my surgical oncologist agreed that there is a 75% chance that this tumor is malignant. There is a 25% chance that this tumor may still be benign. This means that there is a 75% chance that I will be reclassified as having Stage IV cancer, and a 25% chance that I will remain classified as Stage II. Stage IV cancer is considered “incurable”, although if this is a HER2+ type of tumor (if that’s the type of cell that escaped my lymph nodes and made it to my liver), there is a 5% cure rate. This means that 5% of the time, people who have HER2+ breast cancer that metastasized to the liver will undergo enough treatment that the cancer disappears. 95% of the time, this is not the case and those patients will never be cancer-free. If this is a HER2- tumor (one of my tumors is HER2+ and one is HER2-), there is no known cure.

The options for treatment are complicated and widely vary depending on a number of factors. If this does indeed come back as malignant, I will be referred to two liver specialists at Anschutz in Denver to discuss next steps. One type of treatment is called ablation, where they would surgically resect the tumor, and another is radiation. There may also be a combination, and either treatment would be decided upon by the liver specialists, my oncologist, and myself. Neither treatment option is a very good one, and outcomes are generally not terribly effective. Unfortunately, the prognosis for Stage IV breast cancer is not very good. There is limited research on metastatic breast cancer, but the general consensus as of now is that “patients with metastatic breast cancer may live for years, but generally not for decades.” We didn’t discuss prognosis too much yesterday because it was already overwhelming enough to receive the news that she suspects the tumor is malignant, so I couldn’t really go there just yet.

As of now, my primary oncologist and my surgical oncologist have decided to move forward with me undergoing a bilateral mastectomy and axillary lymph node dissection. Generally with metastatic breast cancer, they don’t recommend surgery as the prognosis doesn’t change much and it’s a huge surgery to undergo if it isn’t really going to affect the long-term outcome. However, because of my young age (well, for a cancer patient) and because we don’t 100% know yet if this is malignant, my oncologists and I agreed we want to move forward with surgery. We can’t do a PET scan right now because the tumor may be stunned from the chemo so it wouldn’t light up just yet, but in a few weeks once I get my drains out, if the tumor is malignant, it will have started to grow again, so at that time we should be able to see it on a PET scan. For that reason, my oncologist ordered a PET scan for me to do on March 9th, exactly two weeks after my surgery. I’ll still be healing and have my drains in, but we wanted to know as soon as possible so we can make the appropriate decisions moving forward. We may or may not do a follow-up liver biopsy depending on what the PET scan tells us.

Some of you may be wondering if I am upset that I wasn’t given the opportunity to do a PET scan or liver biopsy back when I was first diagnosed and we found the liver mass on the CT. I am not. My oncologist brought this up and apologized for it, which I appreciated, and she also admitted that she and the other oncologists she met with were 99.9% certain that the tumor couldn’t be malignant based on shape, size, and appearance on the MRI. She also made a great point that is the reason I am not upset…had we done a biopsy or PET scan at that time, and determined that this was malignant, she more than likely would not have recommended the chemotherapy that she did, and she would not have advised I undergo surgery. Because we thought it was benign this whole time, I underwent chemo which drastically reduced the size of my breast tumors, and they are still wanting to move forward with curative intent surgery with hopes that there still may be a chance we can beat this. So, all in all, it may have been a blessing in disguise.

Ok, so that’s all I’ve got for now. I am pretty numb with the news and still trying to process everything. I cried a lot yesterday, and I told Brandon and my family right away. We are still hopeful and although I am devastated, I know that right now I need to focus on preparing for surgery next week and just be patient. I don’t have a lot of capacity for doing outside research or asking questions of those who know others living with metastatic breast cancer, but I’m sure I will soon want to find out more. Right now I am just going to do my best to get through the days and try to maintain some semblance of normalcy. I have a number of appointments with surgeons, anesthesiologists, some support services, and another injection over the next few days leading up to surgery. Amidst all of this we will be celebrating my big brudda’s birthday this weekend which should be fun. I miss my friends and normal life so much, all the time. It’ll be awesome to see a few of their faces, if even briefly this weekend.

Love to you all, and thanks as always for following along. I couldn’t do this without all of your love. Sending love and doggie kisses to everyone out there!