This morning I went for my monthly Xgeva injection. While waiting, I texted my oncologist and asked if I could stop down for the rest of the results (they are only a floor away). He popped up to visit me while I was waiting. My chest CT came back and shows that I have fluid around my right lung called pleural effusion. He was quite surprised that I am not symptomatic, especially regarding shortness of breath. He was also surprised at the results, along with me.
Pleural effusion is concerning, though we are not entirely sure where it came from. It is possible that it is a result of radiation, though the chance is only 2 – 3%. It has been about 12 weeks since I completed radiation to my right side but it was significantly radiated (hence my still-open wound!). There is an assumption that the pleural effusion is a symptom of cancer. In some cases, it would make sense to wait it out and see what happens at the next scan. But with me, waiting isn’t a great idea. It’s best to determine what’s what and make a decision. We absolutely don’t want progression!
Similar to the way a bee sting causes swelling around the skin, it is likely that there are cancer cells floating about and they are causing the fluid to form around my lung. I also have “opacities” bilaterally in my lungs and my radiation oncologist suspects that it is scar tissue, as does the radiologist who read my report. Aside from the fluid, my lungs look “really good” and the rest of me is stable.
So what now? Well, it seems we are at a bit of a turning point….crossroads…something like that. 🙂 We don’t know exactly what is causing the fluid so I have requested a biopsy to confirm whether or not the fluid and lung lining is actually metastatic. Despite my mind being eased either way, I think it’s important to understand whether or not I actually have cancer surrounding my lungs.
My local oncologist recommended to stop Xeloda and begin Affinitor, though it will be a struggle to receive approval through insurance companies in the meantime (that’s a whole other level of frustration). They gave me 2 months of samples as well and we discussed his visit to San Antonio for the national breast cancer convention last week where there were presentations about Affinitor being used with triple negative breast cancer. It is my “off” week for Xeloda anyway so I have time to make a decision and have additional testing done before I meet with my oncologist again next week. No rushing here.
I have reached out to the different centers that I have visited, uploaded my recent scans and I am waiting to hear back. This is, quite literally, why I met with each and every one of those centers. They are some of the best oncologists in our country and I value their expertise along with my local doctors. I know MD Anderson doesn’t recommend Affinitor, however the other centers consider it to be a “reasonable choice”. I have many questions for all of them and I am anxious to hear back from them, especially after I know the results of the biopsy. That will be a key point and decision maker.
It is possible, though unlikely, that this is a symptom unrelated to cancer. If so, then there is still a decision to be made because we need to determine whether it is a side effect of radiation or Xeloda (the chance of it being from Xeloda is even lower than radiation) or none of those. If it is metastatic, then a treatment change is needed and next steps need to be decided. What those are? Honestly, I am not yet decided.
I do have skin nodules, though they are still not measurable enough for a clinical trial. My bones are stable – yay! Though they can’t be used for a trial either. I assume fluid, even metastatic, cannot be used as well. So a trial is not an option currently. I am hesitant to do IV chemo because, well, I don’t want to just yet. I know it’s there and I will need it eventually but I am not quite ready for that. One of them is more tolerable than some of the others but all would require me to lose my hair and well, I like my hair right now! 😉
I’ll have my tumor markers done again next week but they were higher than normal range when done two weeks ago. I was optimistic that they were possibly up farther and actually on their way down because of the Xeloda break (like before when I initially started) but this fluid makes me question my logic on that.
So next step is a biopsy and awaiting to hear from my other oncologists for their recommendations. I was hopeful that I wouldn’t need to make any decisions around the holidays but frankly, progression is worse so I am glad that my scans caught this before I actually have symptoms or major progression.
Is this the good news that I was hoping for last night? No but it’s not the worst news either. It just means that we need to have more answers before making a decision. 80% of my scans showed STABILITY. I like stability. Almost as much as I like it being gone entirely. 🙂