New Diagnostic Test

September 1, 2009. I meet with Dr. Gallagher, who treats my ulcerative colitis (UC). I report to him that I was able to taper off of the Asocol since I saw him in January, with no problems. He is pleased with this. My summarization of his explanation for my marked improvement: some patients have periods of time when their UC just spontaneously improves. I know why my UC has improved, & I’m extremely thankful for what I have learned about UC & the role that diet & nutritional supplements play in both controlling & improving this condition! I remind myself again of his lack of coursework in this area.
I ask Dr. Gallagher if he thinks I can decrease the other medication I take, from 2 pills a day to one each day.
He does a math calculation, using my weight & the number of milligrams I take per day, & says, “Yes, you can try it if you want to. If it is going to cause a flare-up, it will take 1-3 months.”
I am hopeful that this will not cause a flare-up. I trust it is God who has prompted me to make this request rather than just my eager desire to eliminate more prescription medicine that has caused me to charge ahead. Time will tell.
September 9, 2009. I have blood drawn for my tumor marker test. I assume it is much too early to know if the cottage cheese & flaxseed oil has made any difference yet. My life has been too crazy, in the past month, so that I have not had time to do the research to find out how long I can expect to wait until I see noticeable results in my diagnostic tests. I am just hopeful that the number will be lower than the 30.9 on July 8. That will make me happy.
Side note: Research done later states that it takes 3-6 months for diagnostic tests to show a noticeable difference. September 16, 2009. We meet with Dr. Patel for a routine check-up & to get my tumor marker results.
I jotted down a few questions before the appointment, so I wouldn’t forget to ask what I’d been thinking about between appointments.
Of course, my first question is, “What is my tumor marker number?” It is 29.2! It finally dropped below 30! This is a 5.5% decrease! As far as Dr. Patel is concerned, it is still in the normal range. This is a good thing! Period.
I ask if he has decided on November or December for the PET scan. He says it has already been set; the receptionist will give me the date when I leave today. (It happens to be October 30.)
He asks me the usual list of questions & does the usual exam. Then he asks what other questions I have. Yes, he knows me well enough to know I have more questions than the 2 above.
I say, “You once explained the tumor marker blood test as a microscopic test for the cancer as opposed to the gross look at the disease of the PET/CT scan. Can you give me more insight on this?”
Dr. Patel likes my question. He says it actually is an excellent lead-in to what he wants to discuss with us today.
I will try to keep this simple, but I am adding some background details & side notes as I relate portions of the discussion. I certainly don’t expect you to recall what I can recall from the past 2 years, about my journey with cancer, or to know what I have researched on the Internet.
Dr. Patel says, “First, why do we do all of these diagnostic tests? We want to know, when will the tumor become resistant to Femara?” .
Background info: I started taking Femara December 28, 2007. A short time after that, I learned that 12-14 months is the average span of time it takes before a patient’s cancer becomes resistant to the medication. I have been taking it for 21 & a half months, as of 9/16/09! I’m way past the average; I’m praising God!! When the cancer becomes resistant to the medication, in medical terms, it progresses. Likewise, in medical terms, I have been “progression-free” for 21 & a half months! A rising tumor marker number or a PET/CT scan that detects an area or areas of increased activity indicates disease progression &, in my case, these would be the indicators of resistance to the medication.
Dr. Patel’s point is: the constant testing is done to watch for the earliest sign of recurrence of my cancer, due to resistance to the Femara. I understand this point.
Side note: Although I know Dr. Patel is pleased that my tumor marker number has remained in the normal range since December of ’08, I get the sense that he is always hopeful that it will remain in that range, but expecting it, due to his experience with his other patients, to begin to increase at the next blood draw. I know that, initially, Dr. Patel told us to expect Femara to bring my tumor marker down from 580.8 to the 300 range & stabilize. In 2 months it dropped to 389.7. By 5 & a half months it dropped to 126.7! It declined into the normal range over the course of 12 months & continues to decline by small amounts.
I have had conversations with Dr. Powers on this topic, too. He has stated that Femara is not capable of bringing my tumor marker down this far, in this short period of time; so, he does not expect the tumor marker number to go back up. He believes it is the combination of things I am doing that is killing the cancer. Femara is only one part of my arsenal in this battle!! In fact, Dr. Powers thinks I could stop taking Femara, at this point, & the tumor marker number would not rise. I told him that I’m not ready to go that far! He says that it won’t hurt me to continue to take the drug. I feel at peace with the decision to continue taking it as part of my overall treatment plan. If it is making a difference, I don’t want to eliminate it. I am absolutely certain it has played a part in the results I have experienced to this point. Dr. Patel then reveals the exciting news he wants to tell us today about a new test called a CTC – circulating tumor cells test. I listen to his explanation once & take some notes, & then pause to read the notes before asking him to explain it again, as I ask some specific questions, to understand the CTC & to get my original question answered.
I will summarize this & try not to lose you in a bunch of medical mumbo jumbo.
Dr. Patel explains by comparing the diagnostic tests he uses to monitor my response to my current treatment with a new test he is adding – CTC – Circulating Tumor Cells test.
CA 27.29 tumor marker blood test – He explains that this test is not very sensitive or specific. It is actually a protein in the blood that is produced by the cancer cells; however, these proteins can be produced by other conditions. Some breast cancer patients do not experience an elevation in this tumor marker. Thus, a woman with breast cancer may or may not have an elevated CA 27.29 tumor marker.
Side note: If you check out my blog “What is a Tumor Marker,” which I posted July ’08, it describes the process through which it was determined that my tumor marker number is reliable.
PET scans are more sensitive. What does this mean? They can detect tumors .7 cm & larger. [This is just a little larger than a ¼ of an inch, which is] large enough to be seen by the human eye. Dr. Patel’s terminology is: “it can see gross disease in the body.” PET helps physicians effectively pinpoint the source of cancer. It can detect abnormalities in cellular activity, generally before there is any noticeable physical change. The abnormalities in cellular activity are detected on a gross level rather than a microscopic level.
Side notes: I posted a blog, “What is a PET scan,” in May that describes a PET/CT scan & its significance. Unlike ultrasound, X-ray, MRI, or CT, which merely confirm the presence of a mass, a PET scan can distinguish between benign and malignant disorders. Greater activity in a malignant tumor shows on the scan as brighter spots of color than low levels of activity in a malignant tumor. It is not capable of seeing individual cells.
In contrast, CTC is highly sensitive & highly specific in looking for cancer cells themselves floating in the blood. It is more reliable than the CA 27.29 tumor marker because it is counting actual cancer cells in the blood rather than measuring a protein that may or may not be produced by cancer cells. Results are numerical, which will rise in response to the progression of cancer before it is detectable or visually evident by other blood tests or by imaging technology. This means it can detect disease progression much sooner than any of the imaging technologies. (If it has been determined that a patient’s tumor marker is reliable, will the CTC still detect recurrence sooner than the CA 27.29? This is good question for my next appointment. It’s VERY difficult to think of every question I might want to have answered in the middle of a discussion of something so foreign to my everyday realm of knowledge.) If the number is less than 5 cancer is not progressing. If it is greater than 5, it is progressing. Because the blood test is done each month, it is easy to see how fast change is occurring. The most important purpose of this test is for detection of recurrence, & the rate of change is used to make prognosis, as well as treatment decisions.
It is my understanding, from our discussion, that the cut-off number of 5 is to allow for a margin of error in the test. I will go home & research CTC on the Internet & hope to gain a better understanding.
I ask if I will still have the CA 27.29 tumor marker blood test done, if we are going to do the CTC test.
Dr. Patel says that he sees no reason to stop it. It cannot hurt to have more data.
We feel comfortable with this choice, especially when we are familiar with watching this number, know its significance & know that mine has been proven to be reliable.
I have blood drawn to have my first CTC test today. Dr. Patel expects the number to be 0. I think this would be wonderful! That’s my expectation.
September 23, 2009. I call Dr. Patel’s office to see if my CTC test number is available. The receptionist puts the P.A. on the phone, & she excitedly tells me that the number is 3, which she says is really good! Well, it is, but I was expecting 0. I flatly tell her, “Yes, it is” & thank her. I was disappointed.
Ed tells me that I’d be upset if Dr. Patel wouldn’t commit to a prediction, & when he gives me one that’s wrong & disappointing, I’m upset. The poor man can’t win! I know; I just had my hopes too high.
I am happy with the decision to continue the tumor marker blood test, since I am used to watching this number & because Dr. Powers made the statement about 10 to 15 as the range where he will consider me to be cancer-free. I want to see how this corresponds with the CTC test number. Will it decrease to 0 over that same period of time? Only time will tell.
Side notes: I researched the CTC test online to learn more about it. I think I understand it a little better now.
The CTC is a relatively new test. It was approved for use in 2007, but only for breast, colorectal, & prostate cancer. http://www.easttnmedicalnews.com/news.php?viewStory=1183
Used in combination with imaging & all the other important parts of your therapy, the CTC test can help your doctor make more informed decisions regarding your care… CTCs are cancer cells that have detached from a solid tumor and entered into the bloodstream. These cells play an important role in the metastatic process, and their presence can provide valuable insight into disease progression. http://www.carolinabiooncology.org/cell_search.html
Interpretation of my CTC of 3: In the sample of blood drawn there was an average of 3 cancer cells found per 750 ml (about 1.5 tsp.) of blood. Because these circulating tumor cells are not taking up residence & beginning new tumors in other parts of my body, my cancer is not progressing. Instead, my immune system is strong enough that it is killing them & escorting them out of my body! Praise God!I also realize the fact I have circulating tumor cells is confirmation that, although my PET/CT scan shows there is only slight activity in one lymph node, I do still have living cancer cells in the tumors that do not show any detectable cancer, on the May 12th PET/CT scan. It also indicates the need for me to keep my immune system strong so that it will continue to function as God designed it to function.
In the blog about “The Growth Rate of Cancer Cells” I describe how a healthy immune system recognizes & destroys mutant cells, & I describe some of the major factors that cause our natural defense system to fail. Knowing that I have even a small number of live cancer cells circulating in my blood stream makes me mindful of the need to remain vigilant in the war against this disease & with my strategies to keep my immune system strong. (Philippians 4:13 “I can do everything through him who gives me strength.” Psalm 28:7 “The Lord is my strength & my shield; my heart trusts in him, & I am helped. My heart leaps for joy & I will give thanks to him in song.”)
After researching the CTC test online, I have several questions I want to ask Dr. Patel at my next appointment.
Detailed list of 2009 elliptical miles
January 2009 Miles

1/5 - 2 miles 18 min.
1/7 - 2 miles 18 min.
1/10 - 2 miles 18 min.
1/13 - 2 miles 18 min.
1/14 - 2 miles 18 min.
1/16 - 2 miles 18 min.
1/20 - 2 miles 18 min.
1/21 - 2 miles 18 min.
1/23 - 2 miles 18 min.
1/26 - 2 miles 18 min.
1/28 - 2 miles 18 min.
1/30 - 2 miles 18 min.
Total miles for January -- 24!
February 2009 Miles
2/1 - 2 miles 25 min. power walk in FL
2/6 - 2 miles 25 min. power walk in FL
2/7 - 2 miles 25 min. power walk in FL
2/10 - 2 miles 18 min.
2/11 - 2 miles 18 min.
2/12 - 2 miles 18 min.
2/18 - 2 miles 18 min.
2/20 - 2 miles 18 min.
2/23 - 2 miles 18 min.
2/25 - 2 miles 18 min.
2/27 - 2 miles 18 min.
Total miles for February 24!
March 2009 Miles (48 mi. in '09)
3/2 - 2 miles 18 min.
3/8 - 2 miles walking
3/11 - 1 hr. 15 min. workout on various machines
2 miles elliptical
2 miles airdyne
2 miles equivalent various weight-resistance machines
3/17 - 2 miles 18 min.
3/18 - 2 miles 30 min. power walk pushing Cassidy in the stroller
3/20 - 2 miles 18 min.
3/24 - 2 miles 18 min.
3/26 - 2 miles 18 min.
3/27 - 2 miles 18 min.
3/30 - 2 miles 18 min.
Total miles for March 24!
April 2009 Miles (72 mi. in '09)
4/1 - 2 miles 18 min.
4/2 - 2 miles power walk pushing Cassidy in the stroller
4/6 - 2 miles 18 min.
4/8 - 2 miles 18 min.
4/13 - 2 miles 18 min.
4/15 - 2 miles 18 min.
4/16 - 2 miles equivalent .7 walking + 2 hrs. yard work
4/20 - 2 miles 18 min.
4/23 - 2 miles 18 min.
4/24 - 2 miles 30 min. power walk
4/27 - 2 miles walking Cassidy in the stroller
4/28 - 2 miles 30 min. power walk pushing Cassidy in the stroller
Total miles for April -- 24!
May 2009 Miles (96 mi. to date)
5/2 - 4+ miles - Silver Spring Twp 5k Run/Walk & walking downtown H-burg between stadium & Whitaker Ctr for Sci. & the Arts
5/5 - 2 miles 18 min.
5/7 - 2 miles 18 min.
5/7 - 2 miles equivalent 3.5 hrs. yard work
5/11 - 2 miles 18 min.
5/14 - 2 miles 18 min.
5/19 - 2 miles equivalent 2 hrs. yard work
5/20 - 2+ miles equivalent 3 hrs. yard work
5/22 - 2+ miles equivalent 3+ hrs. yard work
5/26 - 4+ miles equivalent walking on the boardwalk at VA Beach
5/28 - 2 miles walking on the beach
5/30 - 2 miles walking on the boardwalk
Total miles for May -- 28!
June 2009 Miles (124 mi. to date in '09)
6/2 - 2 miles 18 min.
6/4 - 2 miles 18 min.
6/5 - 2 miles 18 min.
6/9 - 2 miles 18 min.
6/9 - 2 miles equivalent 2+ hrs. yard work
6/12 - 2 miles equivalent 2+ hrs. yard work
6/17 - 2 miles 18 min.
6/22 - 2 miles 18 min.
6/23 - 2 miles equivalent 2+ hrs. yard work
6/24 - 2 miles 30 min. power walk pushing Cassidy in the stroller
6/25 - 4 miles equivalent 7 hrs. yard work
6/27 - 2+ miles walking at Hershey Park
6/30 - 2 miles 18 min.
Total miles for June -- 28!
July 2009 Miles (152 mi. in '09)
7/1 - 2 miles equivalent 2+ hrs. yard work
7/7 - 2 miles equivalent 2+ hrs. yard work
7/8 - 6 miles equivalent 6+ hrs. yard work
7/15 - 2 miles equivalent 3 hrs. yard work
7/20 - 2 miles equivalent 2+ hrs. yard work
7/23 - 2 miles equivalent elliptical & trimming shrubs
7/25 - 2 miles 30 min. power walk pushing Cassidy in the stroller
7/27 - 2 miles equivalent 2+ hrs. yard work
7/29 - 6 miles equivalent 6+ hrs. yard work & 18 laps in the pool
Total miles for July -- 26!
August 2009 Miles (178 mi. in '09)
8/1 - 4 miles equivalent 4+ hrs. stripping & waxing floors
8/2 - 2 miles equivalent 2+ hrs stripping & waxing floors
8/4 - 2 miles equivalent 45 min. swimming laps in the pool
8/5 - 2 miles equivalent 2 hrs. yard work
8/6 - 2 miles equivalent 2+ hrs. yard work
8/10 - 4 miles equivalent 4+ hrs. yard work
8/15 - 2 miles equivalent 2+ hrs. house work
8/17 - 2 miles equivalent 2+ hrs. yard work
8/18 - 2 miles equivalent 2 hrs. yard work
8/21 - 4 miles equivalent 4+ hrs. house & yard work
8/24 - 2 miles equivalent 2+ hrs. yard work
8/28 - 2 miles equivalent 2+ hrs. yard work
Total miles for August -- 30!
September 2009 Miles (208 mi. in '09)
9/3 - 4 miles equivalent 4+ hrs. yard work
9/7 - 4 miles equivalent 4+ hrs. yard work
9/11 - 2 miles equivalent 2+ hrs. cleaning
9/12 - 2 miles equivalent 2+ hrs. yard work
9/18 - 2 miles equivalent 2+ hrs. yard work
9/20 - 2 miles equivalent 2+ hrs. yard work
9/25 - 4 miles equivalent 4+ hrs. yard work
Total miles for September -- 20!
October 2009 Miles (228 mi. in '09)
10/6 - 2 miles 18 min.
10/8 - 2 miles 18 min.
10/13 - 2 miles 18 min.
10/15 - 2 miles 18 min.
10/17 - 3 miles hiking the gorge at Watkins Glen
10/21 - 2 miles 18 min.
10/22 - 2 miles 18 min.
10/26 - 2 miles 30 min. power walk pushing Cassidy in the stroller
10/27 - 2 miles 18 min.
10/29 - 2 miles 18 min.
Total miles of October -- 21!
November 2009 Miles (249 mi. in '09)
11/3 - 2 miles 18 min.
11/4 - 2 miles 18 min.
11/5 - 2 miles 18 min.
11/9 - 2 miles 18 min.
11/11 - 2 miles 18 min.
11/14 - 3+ miles walking in NYC
11/17 - 2 miles 18 min.
11/19 - 2 miles 18 min.
11/21 - 2 miles equivalent 2 hrs. yard work
11/23 - 2 miles 18 min.
11/25 - 2 miles 18 min.
11/26 - 2 miles equivalent2+ hrs. housework
11/29 - 2 miles 18 min.
Total miles for November -- 27!
December 2009 Miles (276 mi. in '09)
12/1 - 2 miles 18 min.
12/2 - 2 mines 18 min.
12/3 - 2 miles 18 min.
12/8 - 2 miles 18 min.
12/19 - 2 miles 18 min.
12/10 - 2 miles 18 min.
12/14 - 2 miles 18 min.
12/16 - 2 miles 18 min.
12/26 - 2 miles 18 min.
12/30 - 2 miles 18 min.
12/31 - 2 miles 18 min.
Total miles for December 22!
298 Miles in 2009!!
551 Total miles to date!!