It was necessary to complete some extra scans this go around before I felt confident in sharing an update.
First an update from my PET and CT scans.
I am thankful to say that I am still NEAD (No evidence of active disease) from my chest to the top of my thighs. I have remained in a sort of maintenance and rescan mode for almost 3 years. Original cancer in my lungs, bones, and liver have all tiny or nonexistent on a PET scan. The chemotherapy, Herceptin is serving me very well. On December 17th, I will receive my 49th infusion.
Second my last brain MRI
We did have some stress over the past 6 months due to a possible progression in my brain.
I have previously had stereotactic surgery treatment to the three spots that had shown up in 2017.
The spots have been stable in repeat MRI scans. And in a scan this past April, there showed some enlargement of one of the three lesions.
It was noted, and we moved on.
In August, the repeat scan then showed enlargement of all 3 original lesions.
My radiation oncologist, Dr. S had explained that many factors are looked at when interpreting an MRI scan. Yes, what we are looking at could be a progression, or it might be that my brain is “angry,” and it is reacting from the initial radiation treatments.
I still did not understand the fact that there had been minimal edema or change since I had completed the first radiation treatment over a year ago. We were at a loss for why the sudden change unless it really was progression.
At this point, it was decided that we would do nothing at this time and rescan in 3 months again. Steve and I had plans to travel to Europe during that time. I’m glad that the trip was planned in the middle of that time. I did my best to not dwell on the unknown. Steven and I did not talk about the unknown.
I had yet another MRI on November 12, 2019.
All three spots had more than doubled in size. The thing I kept remembering that even with the growth, the lesions were still being measured in millimeters.
When my radiation oncologist called with the news, he was a very manner of fact and went over a few different options.
He offered to give me a referral to a neurologist. This was the worst possibility being a craniotomy to remove whichever lesion would be the easiest to simply remove and biopsy to see if the growth was indeed cancer.
I remember the part when he mentioned to see if the biopsy was cancer and if it was that we would consider all three the same.
Now, remember, I am a metastatic patient. I’ve had cancer in all the typical spots that disease shows up when diagnosed with breast cancer.
The whole conversation was so confusing and difficult to hear. I remember standing in the aisle of the craft store, and suddenly I was trying to remember what I had walked into the store to buy. Then I found my mind finding its way back to listening to his voice. I took a large breath and tried to focus in on the information.
I chose the most straightforward option during the call. I asked for Dr. S to call and speak with the person who had translated the scan to get any extra information from this MRI, if possible. He also mentioned I could have a Spectroscopy Fusion. I had no idea what he was even talking about. But I did know that for me, I needed to breath and keep things as simple as possible.
When Dr. W called that evening, he was so kind. He mentioned that he thought it would be a good idea to have my PET CT instead of waiting. It had been just 4 months since the last, and at that time, I was NEAD.
He felt we needed to know if that had changed. If there were any kind of progression in my body, we would need to change my total chemotherapy protocol. Dr. W didn’t elaborate on what that would like. He did not need to.
Dr. W had already sent the orders in for a PET CT as well as a Spectroscopy MRI, which was the select MRI scan that Dr. S had mentioned.
Dr. W also mentioned that if my PET CT showed no progression that we could start specific chemotherapy, which could help with brain lesions. He let me know that most of his patients don’t feel nauseous or lose their hair from this pill form of chemo. I would, however, most likely experience some new side effects from the chemo.
The PET CT was scheduled a week later, the day before Thanksgiving 2019. I have to admit I was extra nervous going into the test that day. I’ll never forget biting Steve’s head off regarding something very ridiculous. That has always been the telltale sign of my emotional state.
I geared up for the fact that I might have to wait until after the holiday for the results. But low and behold, I did get a call early that evening with the news that I remained NEAD. A layer of nerves was diminished as we enjoyed Thanksgiving with family.
On another note, I chose not to tell friends and family about the scans or the fact that there may be cause to worry about the lesions progressing in my brain.
I have found it most challenging to have several well-meaning people bring up the questions before having something to tell them. For myself, the added reminders of uncertainty are not necessarily helpful. So numb was the word this go around.
The Monday after the holiday weekend was the day I had the Spectroscopy MRI. The procedure was very similar to an MRI with contrast. This test took a bit longer.
An MR spectroscopy compares the chemical composition of healthy brain tissue with abnormal tumor tissue. The chemicals determine what the makeup of the tumor or affected area is.
The results showed three enhancing lesions and are on the left side of my brain. No chemicals were indicating that is is an active tumor.
The test showed again an increase in the size of the 3 areas. The only answer they mentioned is the prior radiation treatment is causing the edema. What they are seeing is necrosis and/or pseudoprogression and is most likely the source of the increase in the size. They recommend continued MRI follow-ups.
I was also offered 4-6 weeks of steroid treatment to reduce the swelling. I chose not to be on steroids during the Christmas holiday. Really my choice is not steroid treatment at all.
The edema may take care of itself over time. However, it is just as likely that the issues continue and could cause issues with otherwise healthy brain tissue.
Time will tell. I am not having any side effects from the edema at this time. We will again repeat the MRI testing in 6-8 weeks.
