My eyes are rolling. My cough returned Tuesday night. I was surprised because my symptoms were gone after the five day steroid prescription was over. I called my oncologist (chemo doctor.) Wednesday morning, who put me back on the steroids. I have to digress for a second. Cancer patients often get three doctors: the oncology surgeon, medical oncologist (in charge of chemo), and radiation oncologist (in charge of radiation). Okay, so the guess is my symptoms were suppressed but not gone. Wednesday afternoon I met with my oncology surgeon. She talked with my chemo oncologist about the cough earlier that day. So when I met with the surgeon she said that the plan is to have me continue with four weeks of chemo treatment and they'll monitor my lungs. After chemo is over, they'll wait one month and then I'll have my lumpectomy.
I gave the order of what happened over the last two days for a reason. When I got home from the surgeon's office, I literally walked through the door and my phone rang. It was my chemo oncologist. The plans have changed. Instead, they'll stop all of my chemo infusions and move up the surgery, which I'm not sure exactly if that's 2 or 3 weeks from now. Then I'm looking at 4 - 6 weeks of daily radiation (which was always the plan). I have an appointment with my oncologist next Wednesday and we'll discuss it further. FYI, radiation zaps are only 5-minute appointments, although daily, they don't take up much time.
In addition to meeting with the medical oncologist on Wednesday, on Thursday, I meet with my radiation oncologist for the first time. I asked for a consult. Note, I asked for it because I have questions. They didn't suggest it. I've been reading studies on Paxitaxel-induced Pnuemonitis (PIP). Simple articles about the condition don't exists. Instead there are medical studies that I have to comb through and try to make sense of. My surgeon and chemo oncologist admitted that they don't have much info on PIP. No kidding. But I need answers. As I mentioned in my previous post (I think), PIP usually starts during radiation not during chemo. 10% of breast cancer patients experience it. The radiation targets the breast, but the lung is in the way, so the radiation triggers PIP. My PIP started during chemo, which is unusual and more rare, and even harder to find studies that I can read up on - not that I understand most of it.
I'm thinking that if radiation triggers PIP, and my PIP started even before radiation, then I could have a really bad case of PIP during radiation. Who knows? I certainly can't find answers. What are my options (can't find much online)? I need to know what the radiation oncologist thinks.
Here's the deal... PIP can cause permanent damage to lungs. So maybe I should NOT have radiation. Instead maybe I should have a mastectomy. It's a major surgery with weeks of recovery and then reconstruction issues. Based on my tumor size and all my research, it's unnecessary. Why some people opt for it anyway can be many reasons - one is a peace of mind of not having a mammogram every year and the other is that it means you don't have to have radiation. Aah. That's the key. So if I'm at risk for permanent lung damage from radiation, perhaps a mastectomy is the way to go. I asked my surgeon, she said, this is not my area of expertise, and agreed that I should talk to the radiation oncologist. Hopefully, this Dr. Basden, the radiation oncologist will offer some insights.
There's one hiccup that I can think of with the mastectomy option... Once they open me up, they'll see if there is any cancer left AND whether it actually reach my lymph nodes. That's been a big question all along. The reports said no. The images looks like it did and ALL of the doctors (even my second opinion doctor) thinks that it might have reach a lymph node. They can only confirm this during surgery. If lymph nodes were involved radiation will still be needed, so why bother with a mastectomy.
This is all in theory and based on my own research. Soapbox time: I believe in being an informed patient. Don't tell me what you are going to do to me. I want to understand and then decide if I'm on the same page as you. I'm hoping my radiation oncologist is one of those people who are comfortable with patients being informed. All of my other doctors have been (or they probably wouldn't be my doctor for long). Some doctors are annoyed by patients with too many questions, especially when the internet is involved. But it was the internet who told me to ask for a mammogram in the first place when my gynecologist told me my lump was just fatty tissue and tried to send me on my merry way. So, yes, I'll continue with questions.
Thanks again for your prayers and support. BTW, physically I feel fine. Unfortunately because of the steroids I want to eat everything in sight. But the plus side is that I have a lot of energy.