Quick summary ... Diagnosed with breast cancer January 2012; definitively known to be metastatic (terminal) 11 months later with spread to multiple bones. Spread to liver in May 2014. Spread to more bones in June 2015. Multiple treatment changes. Spread to brain May 2016.
Now on to your basic science lesson of the day.
There are two basic kinds of brain tumors resulting from the spread of breast cancer. One type forms within the brain and grows outward and one type grows on the outside of the brain and grows inward. The first type is parenchymal brain metastases, PBM and the second type is leptomeningeal metastases, LM. The disease can spread via the blood stream or the central spinal fluid. Both are serious and both are life-threatening.
(Important to note ... I do NOT have brain cancer. I have breast cancer that has spread to the brain.)
Of the two, LM is considered to be the final stage of disease of a metastatic patient with poor prognosis. There was confusion regarding the status of the tumors I have, but yesterday, we were definitively told that I have LM ... the very, scary kind. Thus, the roller coaster ... we felt as if we were upside down, twisting and turning in the wind. Our emotions were all over the place.
I have eight tumors on the exterior of my brain, with the largest being just under an inch.
There are two large study reports out on the internet that indicate that I could have less than a year of life left. However, once again (for now), I'm proving to be an exception. Both of those studies include a large population of people whose health is quite different than mine. While I have widespread disease throughout the rest of my body (about 75 tumors), my body is pretty much working the way it should. I am slower than I used to be, but I am nowhere near incapacitated.
In spite of having eight tumors on my brain, I have very limited symptoms. I have no brain bleeding, no swelling, no midline shift ... pretty much no nothing! In fact, the only "true" symptom was my noticing something "different" about my left leg. It's slightly weaker, harder to bear weight on it while going up and down stairs, but it's nothing in the big picture. The team of doctors I met with yesterday repeatedly asked me about that because my being in tune with my body is what prompted this scan that discovered these tumors. They are amazed that something so tiny popped up on my internal radar. I do currently have some left chin numbness as well, but this is now suspected to be related to chemotherapy and not brain activity as they see absolutely nothing in the brain that could be causing such numbness.
I carried on a full medical conversation with this team yesterday. Full comprehension and full participation. Lots of questions and lots of clarifying answers to make sure I had things straight. At the end of the conversation, the resident said, "I have to ask ... what is your medical background? You have fully presented your own case study with an amazing grasp of options, treatments, terminology, prognosis, etc. You have zero cognitive failure that I can detect at all." I told him that I read a lot and indicated that being a professional patient will do that to you.
I passed every neurological exam they gave. According to the team, I have ZERO symptoms of having breast cancer in my brain.
There are many types of radiation that can be used to deal with these tumors. Because I have so many and because they have popped up since the end of January, we are going for whole brain radiation, WBR. This is not being used as a curative measure, but neither is it being used as a comfort measure only. The good news of this is that WBR is being used to destroy, contain and possibly prevent future tumors.
Once again, whose who receive WBR often have a prognosis of less than a year. I looked the treating radiation oncologist in the eyes and asked if I was looking at my last year of life. He echoed my medical oncologist's words: "Absolutely not." (Both, though, know they can't say for sure, but they're going by statistics.)
His words were, "There's no way I would even try to put a number on you right now. You simply do not fit the models that the studies have been based on. If you came in here and told me you were interested in stopping treatment in order to keep up quality of life, I would do everything in my power to encourage you to continue because I think you have a lot left in you and any talk of stopping treatment is very premature."
We talked further about the actual radiation itself. I've heard nightmare stories about it. Scary stories that I don't want happening to me. However, we reviewed how brutal the radiation treatments to my neck were in 2013 and he said that WBR would be much easier than those. Okay! If that's the case, I'm no longer scared. Those six weeks of neck treatments and recovery was really hard, but I'd do it all over again. I'm still here and the cancer has never returned to the neck.
I will be fatigued, so that means naps when I need them. I will lose what little hair I have left (none!) and there is a potential of that being permanent. I absolutely don't care about that. I may or may not have short term memory loss and/or some cognitive failure six months down the road, but it doesn't sound like the risk outweighs the benefits, so that's just sitting on the back burner of awareness. We will monitor progress every two months or so via MRI and we will work in tandem with the medical oncologist to keep the systemic (whole body) treatments going throughout as well. (Most chemotherapy treatments do not typically cross the blood brain barrier or the central nervous system barrier. The one for my type of cancer that does cross has already failed; therefore, it cannot be considered for me.)
In short, I am an outstanding candidate for WBR with an optimistic outlook for success. (Doctor's words, not mine.)
I will have the mapping and simulation appointment tomorrow (where everything is set up) and radiation will begin on Monday. It will last for two weeks with the weekend off.
I am hopeful. God has kept me here for this long and he has kept me reasonably well. In spite of the ups and downs of the day yesterday (one doctor walked in while I wiped a single tear away from my eye), I slept quite well last night.
Many thanks for all the love that has shown up in many forms. The texts, emails, phone calls, patience and the meals on Treatment Tuesdays have been soooooo appreciated! It's always nice to know that I don't have to cook after a 13-hour marathon day in the City.
My husband and I attended a family wedding this weekend and really enjoyed ourselves. Many of you have seen this photo, but I like it so much, I'm sharing it again.