Time to Call in the Big Guns

A couple of days ago I had an appointment with the colorectal surgeon who found the initial tumor in 2008. During my appointment with him I described to him my frustrations with Stanford. He said that they are very difficult to communicate with and that's why he no longer refers patients to them. Instead, he refers patients to UCSF. He gave me the name of a top cancer specialist up there and so I called them to self-refer. Luckily I am fastidious about collecting and filing away every test and lab report, every surgical report, everything and I had a pretty complete file here already. David helped me to copy and label 24 CDs and DVDs which contain the images of all of the scans that I've had done. I gathered all of the papers and headed to Kinko's where I copied 199 pages of medical history. I sent that packet along with the 24 discs to UCSF and the entire package will arrive there by noon tomorrow. Probably next week I'll hear back from the New Patient Coordinator (it takes 2-3 days to review all of the information) and then I hope to get on the schedule. I hope to be included in their tumor board.

I don't think that my treating oncologist feels like any of this is necessary but he's indulging me. Who knows, it just may save my life, and if it's an effort that I want to make then it's my choice to do so. Luckily we have amazing insurance. For the rest of the year, medical care won't cost me a  thing.

CT Scan from 6/20/2011

Commentary from her Other Half

It’s me. Laurie’s other half chiming in. I wanted to pass along an important perspective. It’s kind of a weirdly positive element. All too often we hear that someone has a certain amount of time to live. No one has even hinted at that. Everyone sees Laurie and knows how strong she is. We are truly into a management mode. I expect Laurie’s going to be around for quite some time.

Dr. Fisher made the allegory to treating diabetes. Granted the medications are typically a lot more intense for cancer, but there are some fairly mild treatments too. The challenge that we have is to find the right drug or mix of drugs that stop growth, reduce their size or completely eliminate the tumors while at the same time not making Laurie uncomfortable. If we halt the growth then down the road we can consider surgery to remove the existing tumors. If we are successful in reducing or eliminating them, even better. There are some drugs we already know to avoid (the cure is worse than the disease).

If we get into a holding pattern then we are in a good place for future developments. Dr. Fisher was just at a national conference for cancer and colon cancer treatment. While there is nothing imminent, there are studies going on and one is at Stanford. I think it’s too soon to know much, but the first stage is wrapping up and there may be opportunities in the second phase (we know very little and it’s too soon to know if Laurie’s even a candidate).

So, while we’re disappointed to officially hear that we’re now in management instead of cure mode, we aren’t in a dire mode. We just need to manage it and enjoy ourselves. We’ve got two wonderfully attentive puppies and a flourishing garden to enjoy.

Our Meeting with Stanford Oncologist & Surgeon

Dave and I went up to Stanford today to meet with an oncologist (we conferred with him last year) and a GI surgeon. The oncologist explained to us that with the first tumor in February 2008, it was removed and aggressive chemotherapy was given in hopes of a cure. Also when I had an isolated occurrence in my liver, which was removed in January 2009, there was still a chance of a cure. And even last year, if the surgeon was right and the tumor was a left-behind piece from 2008 there was a chance of a cure when it was removed. However, with 2-4 tumors showing up now, and all in different locations, it looks like that's no longer an option. The goal now will be to keep them from growing and spreading, sort of maintaining my relative good health and well-being until better treatments are developed. So, it looks like the most likely scenario will be to give me some "gentle" chemotherapy and watch the tumors... see how they respond. If the chemo doesn't work then we try another combination. But I won't go for all-out-aggressive chemotherapy because there's no longer a chance for a cure. With that in mind, I don't have any plan to spend the rest of my life miserable from chemotherapy drugs. Right now I feel perfectly fine and if we can give me some infrequent or lower-dose drugs to keep things as they are (or even make them go away), but still allow me to go about my life as I do now (as best I can) then I'm OK with that.

The surgeon would like for me to do a CT scan which will give better imaging of the tumors and show where they are exactly in relation to other organs. After he reviews that scan then he will communicate with me about his recommendations. But I fully expect him to recommend holding off surgery for now. Heck, if we leave them in place then we have something to gauge effectiveness of chemotherapy drugs. I will ask about possible Cyberknife surgery in the future if a tumor starts to threaten other vital organs.

So, soon I will have a CT scan, then will hear from the surgeon. I will also await the results of the targeted assay. Then I will talk with my treating oncologist and we will come up with a maintenance plan that I can live with. These tumors are so small and I have no symptoms. There really is no rush at the moment, we have some time to figure things out.

Oncologist Appointment Yesterday

David and I had a meeting with my oncologist yesterday. There's really not much yet to report. He doesn't think that a surgeon will recommend surgery, but we will be meeting with one on Thursday so we'll know more about that then.I can kind of understand why he would say that. If there are 2-4 more tumors that we can visualize right now then how many more are there that we can't see yet? At some time, they will stop trying to pick them out as they show up. He also said that right now the additional tumors are so small and they aren't threatening any organs so we have time to figure things out.

In addition to meeting with a surgeon on Thursday we will also meet with the top oncologist at Stanford. Between the two guys (and our oncologist) we should get a plan going soonish. I hope to be discussed at their next GI Tumor Board (next Wednesday) and then we can find out what the collective opinion is. We also haven't ruled out conferring with MD Anderson Cancer Center in Houston or Sloan-Kettering Cancer Center in New York. If nothing else, perhaps one of those two highly regarded cancer centers will have a clinical trial that I can participate in. Also, we are still waiting for the results of the "targeted treatment" assay. This may identify some specific treatment drugs that my particular cancer cells may respond to.

I'll post updates as we learn more.

Thank You All

I would like to send out a heartfelt "Thank You" to all of my friends and family who have sent kind words of encouragement. I have received numerous emails, comments here, and notes on Facebook. I appreciate each and every one. And knowing that I have such an army of support behind me means a lot. I know that it means a lot to David too.

PET Scan Report

Well, I got my report. I actually got it yesterday but have been letting it ferment for a while. Basically it says that I have two definite tumors, one in my left mid-abdomen and one in a lymph node in my left pelvic area. Also there are two more "soft tissue densities" that cannot be excluded. One of these is near my right kidney and one of these is in my "left mid-pericolic gutter", whatever that means. I didn't know I had a gutter. So, as it turns out, I have somewhere between 2-4 things to deal with this time. I hope the surgeons can find a way to get to all of them and have a good look around while they are in there.

The radiologist always looks back to the previous scans to compare findings and the two definite tumors, looking back, were probably on the last scan in April but were very hard to see because of their small size and their lack of brightness. For a PET scan I have to lay off of the carbs the entire day before and go in to the scan fasting. They then shoot me up with radioactive glucose. Tumor cells are greedy little buggers so they really suck up the glucose. The scan looks for this metabolic activity and it shows up as bright spots on the scan. Well, these two tumors weren't so greedy in April (they were just babies) but now this time they were bigger and brighter.

It was in March that my CEA started to rise so I'm not surprised to hear that these spots were actually there in April, but were under the threshold to call malignant. I'm also not surprised to hear that they found them this time. But I am surprised to hear that there are possibly four things to worry about now.

There were some people (including my oncologist) that tried to downplay the significance of my rising CEA. Having to try to convince them didn't help and after this perhaps they'll just listen and trust me. I'm glad that I talked my doctor into moving the PET scan up. As fast as this thing moves who knows what they would have found a month from now.

Here is my report. I've removed all identifying information. One fun thing to note is the comment about my gray matter in the "HEAD/NECK" area. I guess I had a lot on my mind!

Inaugural Post

Howdy folks.

Welcome to my new, simple blog. My previous blog was so unfocused and I when I wasn't having any cancer news I could rarely think of anything worth posting about. I felt that I had made a promise that I couldn't keep. So, I am starting over with a new one and this one will only be about what's going on with me cancer-wise. Here's where I'll post updates about blood tests, scans, surgeries, and treatments. We have found that this is the easiest way to get information to everyone who wants to be kept updated.

So, let's get started, shall we?

Since March my CEA level has been on a steady march up. The CEA is a tumor marker that is monitored via blood tests. Well, in January it was 0.7. But then in March it jumped to 1.5. After that it kept climbing: 1.6, 1.9, 2.2, 3.8. At this point I convinced the oncologist to move my PET scan (scheduled for July 6th) up. So, today, June 8th, I had a PET scan. And here we are, almost exactly a year from finding the last tumor (it was June 9th last year) and it seems I have another one. I am not supposed to know this yet, but I do. I'll know officially in a couple of days, and there's still room for a retraction in case the person who told me is wrong. It's official once the radiologist reads the scans and writes his report. But I expect it to say that I have a new tumor, and it's in the same area as the last one.

What do we do? I have a call in to the doctor up at Stanford, as I intend to involve him and the Stanford GI Tumor Board again. I will find out if less-invasive robotic surgery is possible for me. My oncologist is supposed to have already sent some of my tumor cells away (from the last surgery) to find out if there's a targeted way to treat it. I will no doubt have surgery again. I will resist chemotherapy if possible. And I'll heal again and wait for the next time.