No magic bullet

So we got the second opinion today and nothing earth shattering. I am somewhat relieved that he basically said the same thing my own oncologist said, but also vaguely disappointed that he didn't have any secret tricks up his sleeve. He said Dr. Sedlacek's plan was a reasonable approach. He has some other meds that he seemed to like better, but he wasn't very convincing so I need to do some research on those. They all start with E's and have very complicated names! He said the BK120 clinical trial made sense. (Bruce has since renamed the BK drug the "Burger King drug"--leave it to my hubby to lighten the mood :) ) Dr. Elias is the principal investigator of his own clinical study that is looking at androgen receptors. Turns out androgen receptors are involved in prostate cancer and I guess there is a link or some serious theorizing going on the androgen receptors might be involved in breast cancer too. Currently they test for estrogen (for which I am positive), progesterone (for which I am negative) and Her2Nu (a growth factor receptor for which I am negative). They don't test for the androgen receptors since their role in BC is all very new. He thinks I am a good candidate for his study too. If things get worse, that's when we "throw the book at it" and look at more chemo, rads, etc. I'd rather throw the book at it now, but that doesn't seem to be the approach to take, or make a huge difference he said. Better to try to manage it with the drugs we haven't tried yet. Less side effects and less trauma to my body. I guess it makes sense. Like if I had a small heart attack that they could fix with a stent, they wouldn't be rushing in to do a quadruple by-pass. I just want to find the med that will stabilize me!

Apparently all of these options are open to me, at any time, in any order. I can try something, if it doesn't work I can try something else. I have the "luxury" of time. Let me tell ya tho, it doesn't feel very luxurious. I'd rather have the luxury of no worries and a clean bill of health, or at least a spa day! The hardest part of this for me seems to be the fact that we are no longer on the "get rid of it" path but on the "let's manage it" path. Still not a bad path to be on, but it's hard to let go of the hope of being cancer-free. And you know what? I might just not let go. Who's to say? If they can find the drug that will maintain me for several years, who's to say they might not have something even better down the road?

On a side note....it feels a little weird to have doctors pitching clinical trials at me. Take my drug....no take my drug. Although Sedlacek isn't an actual investigator, he's just working with the researchers by allowing access to his patients and following the protocol. But still...feels kind of like when I'd go to a new dentist and see visions of a new boat in his eyes! But I guess it's good to be wanted!

Many thanks to you all for your positive thoughts, support, and well wishes. You may not feel like you are helping but you are! Now....let's think about something more pressing....I gotta get going on my Christmas shopping! Savor each day, it's all you can do :)

On the eve of my second opinion

Well this fine Tuesday evening has me contemplating what's in store for me tomorrow. I am mixed in my emotions; part of me me dreads it and part of me is excited. I keep trying to channel the excited part, but it's hard to not feel the fear burbling as we get closer. To get us all on the same page, let me recap the last couple of weeks. I had my 6 month follow up PET scan on November 26 with results on the 28th. Some things look better, some things look worse. All the crap on the left is gone and clean so that's good news, but not unexpected since they took everything off over there. The spot on my spine (L1) is gone. Nothing in my lungs. There hasn't been to this point but I'm just always very relieved when they tell me my lungs are clear! The liver looks about the same, some say worse, but the findings are misleading. I had 3 spots last January on my liver, down to 2 in May. I still have 2, but they say one is new. Well if one is new, what happened to the other one? So I am confused on that one. Most discouraging are two new faint spots, a new one on my spine (T10) and one on my left proximal femur along with a lymph node on the right lighting up. How can I have a lymph node on the right light up when there's never been any disease there you ask? Well, maybe you aren't asking that but I did. When they remove so many from the left, the fluid still needs to drain somewhere so sometimes it finds it's way to the right and spreads the disease that way. Great. Thanks. Way to share.

So after that fun news, the talk turned to treatment. Clearly the estrogen suppressant  medication I've been on for 4 years ain't cuttin' it (first Tamoxifen, now Femara) so he said we would try a different med that's pretty new.  It's called Faslodex and it's an estrogen receptor blocker. He also recommended I participate in a clinical trial that is pairing the Faslodex with an experimental drug theorized to shut down the pathways cancer creates for itself that allows it to spread and be so resistant. Did you know cancer can create it's own blood vessels to feed itself? I didn't. Damned sneaky stuff. Bad thing about the study tho is that it's a very rigorous protocol, lots of testing, and I might get a placebo. They would check me frequently but I don't want to waste even a few months on a medication that might just be a placebo. So I am unsure about that one. So that was the plan presented: Faslodex plus the clinical trial.

I asked about radiation, surgery, chemo, etc and he said we need to take a systemic approach. I get that. I really do. I understand that for every spot we can see there are more lurking, undetected. But both Bruce and I felt a little disappointed that he really wasn't open to any other ideas. I want to attack what I can see and what I can't see. I want to attack it all. I don't want to save the big guns for later when I'm really sick. I'm not that sick right now. In fact, I am danged healthy if I just didn't have this cancer-crap. I am asymptomatic so I feel like I have a critical window here for trying to beat this. Not just manage it like a chronic disease. Don't get me wrong, managing cancer like diabetes or something is a great goal and if that's the best I can I do I'll take it. The doctor asked me if I thought I could live another 20 years like this and I turned it back on him and asked him "Can I live another 20 years like this?" He said yes and that the goal in cancer is still looking for a cure, but also really shifting towards figuring out how to manage it like a chronic disease. I think that's great, but I'm just not ready to think that's my only option right now and I need to hear more, hence the second opinion. I don't want to sound greedy, but I guess I am. I know many cancer patients hear much more discouraging news and much shorter time frames. I am grateful for 20 years as a realistic possibility. I really am. But I'm not ready to say that's the best we can do. I did see my radiation guy a few days later and he was a little more broad-minded. He still recommended the systemic first, but said once I was "stabilized" they could go in and zap the spots we could see.

So, my second opinion is tomorrow, with a top-rated breast cancer doc and a top-rated cancer hospital here in Denver. They've had all my records since last Wednesday. I am mostly excited and eager to hear what he has to say. In my fantasy brain he tells me there's been a mistake and my "hot spots" really aren't cancer and I am fine. Or that he has this amazing treatment he knows will fix me right up. I have to keep telling my fantasy brain to chill. I like the enthusiasm but we do have stay realistic here. If he gives me the same advice as my oncologist, I guess I'll feel a little disappointed that there isn't something better, but I'll feel more confident that we're on the right track. If he comes up with a different plan, I'll have some serious thinking to do! My fear lies in worrying that he'll tell me the cancer is not what we thought, that it's some sort of different cancer. Or that he'll tell me I need 16 more tests before he can go further! Please no more tests!!! ;)

So I that's where we're at and I'll let you know what I find out!