I knew this day would come.
There was a difference in the way my oncologist entered the room. Her face told me the news. She walked over to the sink and began washing her hands as she always does. This time, though, she didn’t immediately jump into I know you are anxious to hear. Your scans look good. Today, as the water washed over her hands, she turned to look at me and asked how I was. I responded, “It seems I am not doing that well.” She said, “Well . . . there is what appears to be a slight progression.” She dried her hands and sat down and began to review what was reported about my CAT scan.
I had tried to prepare myself for this moment. For days I have been going over the scenario of how I would react if told the cancer had progressed. I remember thinking there is nothing I can do about it. I will not die today and not even tomorrow. Along with possible bad news, I also kept hoping that I would once again have the good news of stable disease. Then I could relax and enjoy life for another three months.
The report stated that there were numerous nodules in the upper lobe of my right lung and in fact those appeared to have increased in number. This is completely different than the last several CT reports. Matter-of-fact, my last few scan reports have not mentioned the lung nodules at all. Since there had been none reported, I believed that none were visible. My oncologist had not reviewed the scans herself, so she could not comment. Since the nodules were now noted, this seemed to me to be a definite indication of progression. But, my oncologist wanted a radiologist from her department to review the scan and give his report before a new treatment was started. One report of slight progression from one radiologist may not be the conclusion from another radiologist, apparently.
The other concern was a fluid-filled mass in my throat that my oncologist wanted examined by an Ear, Nose, and Throat Specialist. I would need to have this 1 cm mass investigated before I received my next treatment. My oncologist did not believe that the mass was cancerous, but it was possible. More crap to deal with – what fun!
Soon we were discussing the next treatment option. This would be a drug called ado-trastuzumab emtansine (Kadcyla), previously referred to as T-DM1. This drug was FDA approved in March of 2013, so it is a very new drug for people like me. It is a chemotherapy agent, but it is attached to a targeted therapy (trastuzumab called Herceptin) so it targets the cancer cells. Most Her 2 neu targeted cancer drug treatments include Herceptin. The cost is estimated to be around $9,800 per month and is given through IV infusion.
If I am given this new drug, I will have thoughts of worry for the next three months until the next scan. The new drug may not work. Maybe it will. And so there go my thoughts, bouncing back and forth from bad to good, and good to bad.
I almost lost control of my emotions as we talked about changing treatment. When I thought about possibly losing my hair again, I could feel my body begin to shake. My hair, to have it, makes me feel more like the old me. Losing it is quite devastating and ridiculous at the same time. It is just hair, but it gives the illusion that I am just as healthy as I was before April 1, 2013. Fortunately, the side-effects of T-DM1 don’t include hair loss.
After my initial shock, I regained my composure and looked down at my notes. I was curious if my moving on to a new drug would disqualify me for any existing clinical trials. Trials sometimes don’t take people if they have been given certain drugs. Dr. R. said that there were no trials on-going that would offer any drugs any better than this new option.
Also, I inquired about having a genomic profile done of my cancer in case certain characteristics of my cancer could be matched to particular drugs. My oncologist said yes this could be done. At UNC there is research program called UNCSEQ . A sample of a person’s blood and a sample of a person’s cancer cells are taken. My previously taken cancer cells are in storage so no need to go through another biopsy. Then DNA sequencing is done of the cells from both samples. Those are then compared looking for differences and similarities in the genetic codes. There would be no cost to me. The results would be reported to my oncologist including any particular results showing a genetic component that could affect my children. The entrance into the research program was simple. I signed some papers and blood was taken from me. I was told that results could take as long as 3 to 6 months. At least something productive did come from today.
Receptor Status Change
The last of my questions asked of Dr. R. was about testing my tumor to see if there had been any changes in the receptor status of my cancer. Currently, I am Her 2 neu receptor positive. There are an abnormal amount of receptors on the outside of my cancer cells. Because of this, the cell gets its signal to divide and grow from these receptors. This over-abundance has caused these cells to act abnormally. Other receptor positive cancers involve the hormones estrogen and progesterone. Their mutation causes them to behave abnormally when these hormones are present. There can be any combination, positive or negative, of these three receptors. I discovered something from her explanation of my not needing this testing now that I had not known. All breast cancers change in various ways overtime – I knew that. That is why treatments must change. I learned that breast cancers that are positive for a particular receptor can lose these receptors and receive their growth and dividing signals through another pathway. They can lose these receptors, but the interesting part is once they are negative for a receptor they cannot become positive. Since I am negative for the estrogen and progesterone receptors, I will never be positive and never have the option of being treated with the drugs used against it. After thinking about it, I realized this new knowledge has brought me a new layer of fear. Dr. R. said that if she noticed my cancer becoming highly active, she might suggest testing for the receptor status. If there was a change, my cancer would be TNBC or Triple Negative Breast Cancer. That has fewer options for treatment. Yup, a new layer of fear added to the mountain of layers already within me.
Interesting incident occurred as the nurse was trying to organize my appointment with the ENT and to plan for my treatment the following Monday. Before she spoke to my husband and me, she closed the door of the room then proceeded to tell me she had known on Friday the results of my scan. (I had requested at my last appointment that as soon as the results were known that she call me.) She apologized to me, and said she had “chickened-out”. She did not want to give me the bad news. I really wasn’t sure how to take this nor do I still. While I do appreciate her thinking enough of me to not want to tell me unpleasant news, I feel that she neglected to do this part of her job. It really isn’t a question of whether she wants to give the news or not. If she had not told me, I never would have known. For that, I appreciate her honesty. If not for her guilty conscience, I would have continued to believe that the results had not been received until today. In the future, I will just wait until my appointment to receive news. It won’t change anything anyway.
I need to rant for a moment . . . I should have been called by phone by someone. At the very least to readjust my appointment until all the facts were available. If my treatment was to be changed, I wouldn’t have received treatment on this day anyway. The insurance company has to approve the new treatment. Seems it would be more efficient to call me, let me know that the results of the CT scan needed a second opinion, and call me back to schedule a new date for treatment. Instead, I drove those 2 ½ hours, had my port accessed, only to find out that I have to return a week later. Time is important no matter who you are, but when you know for sure that you only have a short amount of time left as a breathing/thinking human being, the more important time becomes. Yeah, I know, my visit allowed people to be paid today allowing them to feed their families. I just hate to think that money is more important than implementing the best and most efficient method of handling a patient’s time.
The Unexplained Mass
Tuesday, I went to the Ear, Nose, and Throat Specialist. He examined my scans for the questionable area and read the part of the report that described the fluid-filled mass. A long tube was placed down the left side of my nose so he could view the mass. It was located at the base of my tongue within the curve that becomes the epiglottis. After viewing the area with the scope, he put a glove on his hand and put two fingers down my throat and pressed on the area. The procedure wasn’t so bad. He had numbed my sinus passageway. Amazingly, I did not gag as much as I thought I should have. In the end, he called the mass a Vallecular benign cyst. Whew, I can push that worry to the side.
The Second Opinion
This Thursday, the radiologist in Chapel Hill will review my CT scan comparing it to the scan from January. Then, probably, Friday, I should get a call (or maybe not) to let me know if in fact there has been progression. It would be nice to hear that there is not enough evidence to say for sure it is progression and that I can remain on my current treatment. I feel really good physically right now and I really hate to see that change. Plus, I was so hopeful that Perjeta and Herceptin would keep me stable for a long time. It has been 12 weeks without the Taxotere. If there is progression, it makes me think the Taxotere was doing all the work to keep the cancer stable. My doctor said there was no way to prove this. I think trying Taxotere would prove it, but no! I do not want to do that. Still, I have to wonder if I had not asked to try just the targeted therapies, would I possibly be changing drugs this Monday. At least my chest tumor pressing on my vocal nerve is still stable.
So, I may be moving on to a new treatment. Not the kind of news I wanted to hear.
My next appointment is Monday, May 5th. I will post about it next week.