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!!
Saturday, October 31, 2009
Wednesday, October 28, 2009
Unusual Alternative Treatment Option!
August 5, 2009. I meet with Dr. Powers to bring him up to date on my general health & test results.
I report that I have eliminated the drug, Asocol, completely; I was taking 12 pills a day for ulcerative colitis. The doctor treating me for this condition does not believe the improvement is attributable to the change in my diet; however, I believe it is directly linked to the change in my diet & the addition of digestive enzymes & nutritional supplements. Prior to these changes, I had 1 or 2 flare-ups per year, & my medication was increased yearly.
This same doctor has told me there are no clinical trials that show there is a link between diet & this condition, so that there are no dietary restrictions. Well, I read a book, written by a professor in the Department Physiology & Pharmacology at Wake Forest University School of Medicine. He holds a Ph.D. in biochemistry. The book is based on 6 clinical trials he conducted that show the link between diet & conditions such as arthritis, asthma, allergies, diabetes, heart disease, eczema, inflammatory bowel disease (ulcerative colitis is included in this category), etc.
This emphasizes the necessity of taking an active role in each of my health issues. I now understand how important it is to understand my condition & to learn what I can do for myself, in addition to what my doctor prescribes for me. I have to keep in mind that medical schools do not provide any coursework on diet, nutrition, & nutritional supplements, as they relate to prevention &/or treatment of most diseases/medical conditions.
I’ve done a lot of reading & research on this condition & now know that there is a very strong link between diet & this condition. I first found a list of foods to avoid in another reference book. When I eliminated them from my diet & added the suggested digestive enzymes & nutritional supplements it made a world of difference!! I could eat without feeling nauseous.
Dr. Powers is pleased with the fact that I am off of another prescription drug, as it decreases some of the toxic load on my body.
Dr. Powers is also happy with the continued decline in the tumor marker number. July 8 it was 30.9. He’s been expecting the number to decline into the 20s. It’s getting there, but slowly. He is also pleased with the PET/CT scan results.
I describe the conversation with Dr. Patel concerning the term remission. Dr. Powers shrugs his shoulders & says it’s just a game of semantics. He understands what Dr. Patel is saying about the misuse, misunderstanding & false hope, but it’s a word the public is used to using. I understand that he feels it is the oncologist’s responsibility to make clear the definition of the word remission if he or she uses it with a patient. Several months ago Dr. Powers said he would describe my cancer as in “clinical remission.” From that I understood him to mean that the cancer is stable, from a clinical point of view. It poses no present threat to my life; however, I still have cancer.
Next, I explain Dr. Patel’s proposal of surgery to remove the lymph node that still shows some slight activity. Dr. Powers wants to know why. I explain.
Dr. Patel told us, “The standard of care for advanced disease cancer is changing. If a patient has a very good response to therapy, [such as I have had,] surgery may be considered. Surgery at the origin of the cancer may delay the progression of the cancer if the current activity is confined to that single location.”
I pause & look at Dr. Powers to see how he is responding to this information. I can see tension in his face; it’s obvious that he does not agree.
Of course, Dr. Powers asks what I chose to do, & I told him I said, “No.” I told him what I gave as my reasons & that Dr. Patel agreed with my first reason – the activity is only slight; what I have been doing is working very well; if I continue, it will probably take care of the remainder of the activity in the next few months.
He seemed to shrug off my 2nd argument – having surgery & not removing all cancer is like pouring gasoline on a fire, with respect to the cancer that is not removed.
It is Dr. Powers’ opinion that surgery is still a poor option, for the same reason I gave Dr. Patel. His description of what happens is something to the effect that it causes the remaining cancer to spray, like an aerosol can [my mental picture of his description], cancer cells throughout the patient’s blood stream & is very likely to cause metastases to spring up in other places in the body.
This is more confirmation that convinces me that we made the right decision.
As a part of our conversation, I inform him that my next PET/CT scan will be in November or December, since the tumor marker results have remained stable since December ’08. According to Dr. Patel, my number is in the normal range, but Dr. Powers is waiting for it to drop into the lower 20s. At this appointment, he tells me that if it drops to a number between 10 & 15, he believes I will be cancer-free!! This is an exciting piece of information to know! To that end, he asks me to try a new form of treatment to help me reach that goal. I was anxious to reach the low 20s. Now, I’m psyched about going for the 10 to 15 range!
I’m thinking he’s going to suggest a nutritional supplement. I’m very surprised when he asks me to eat low fat cottage cheese mixed with organic flaxseed oil. Oh, doesn’t that sound yummy? I’m wondering how this concoction is going to kill cancer cells. Some alternative treatments, at least at first, seem rather bizarre!
I tell him, “I don’t consume any milk or milk products, except organic yogurt or yogurt with live cultures, due to my ulcerative colitis.” He explains that I should be able to tolerate the cottage cheese if I can tolerate yogurt. Then I ask him how bad this is going to taste. He tells me that he is a poor judge because his taste buds aren’t that great. I’m thinking ‘Oh, thanks!’
He relates several incredible testimonials of his cancer patients, with advanced stage disease, who are using this regimen & are making miraculous & rapid recoveries. I’m thinking that this sounds good, & I remember reading a book that mentions people using this mixture to beat cancer. The book discusses several alternative cancer treatments patients use to fight cancer. It was the very first book I read that discusses fighting cancer with alternative treatments, & I wasn’t so sure I could trust what I read. This treatment, in particular, seemed to be more than a little farfetched, even though the author states that there are “scientific evidence & documented facts” to back up all of the statements made in the book. Now my alternative treatment oncologist is suggesting that I eat it. He has my attention. I’ll listen, ask questions, & do more research.
To help the taste, he says I can add some agave nectar to sweeten it. A few drops of lemon juice may also help. I ask about adding fruit. He tells me to have fruit before consuming this not with it. He provides an explanation for this. Thanks! He gives me a sheet with the amount of each to mix together & tells me to mix it with a blender so that it is homogenized. I’m thinking this may help to disguise the taste of the flaxseed oil a little.
I ask if I can just take flaxseed oil capsules with cottage cheese. I’m thinking, ‘swallowing that brown oil in capsules would be much easier than eating it off of a spoon.’ The answer is, no. The processing to produce the capsules destroys the beneficial properties of the flaxseed oil. Oh, darn! You can’t blame me for trying though.
As you can tell, I don’t have a positive attitude about how this is going to taste, but I decide it is much better than having to submit to chemotherapy. I can do it. Besides, I only have to eat it as a meal replacement 3 days a week.
Dr. Powers explains a little of the chemistry/biology of what this mixture does to cancer cells & the amazing results! A German biochemist, Johanna Budwig, determined that cottage cheese & flaxseed oil have the correct naturally occurring properties & chemical combination to produce the results she discovered in her laboratory research as having the effect of either killing cancer cells or causing them to revert back to normal cells! This is what sets this treatment apart from all others, which are aimed at merely starving or killing cancer cells. There’s no other treatment known to cause cancer cells to revert back to normal cells. These beneficial properties, of the cottage cheese & the flaxseed oil, are destroyed if they are processed to put their chemical compounds into capsule or pill form. There is no substitute for eating the real deal.
Since he knows I am an avid reader, Dr. Powers asks if I have read about Dr. Budwig & her research. I tell him that I do not remember her name, but I do remember reading about people eating this combination & beating cancer. He writes her name on a sheet of note paper & hands it to me so I can look her up. Does he know me well? Yes!
Of course I will research this to hope to better understand how this happens. I will also pull out the book that presented the testimonials of the folks who used this mixture to beat cancer & re-read it to see if Dr. Johanna Budwig is cited as the individual who came up with this combination for conquering cancer. (As I expected, everything checks out in the book & on the Internet. Johanna Budwig died, at the age of 95, in 2003, but there is a cancer center, in Spain, that bears her name & uses her protocol.)
I bought cottage cheese & Barlean’s organic, highest lignin, pure & unfiltered, cold pressed, flax oil. I tried it first with a little Splenda & a few drops of lemon juice. It was bearable but not very good. I just ate it & repeated to myself, ‘cancer cells are reverting to normal cells.’ By the 2nd week I knew I had to come up with something I could add to it to make it palatable. I found 2 kinds of granola at a natural foods store that are compatible with my diet. I also purchased agave nectar to replace Splenda. Now I like my cottage cheese & flaxseed oil breakfast, with a drizzle of agave nectar homogenized in the blender. I top it off with a generous amount of granola. Yum, yum! I find that I eat it more than 3 times a week. Bye-bye cancer cells!! Hello healthy cells!!
For more information on this form of treatment visit this site: http://www.budwigcenter.com
A closer look at the protocol of the Budwig Center, which is based on Dr. Budwig’s 50 years of research & countless testimonials to back it up, reveals this is one element of a multi-faceted treatment plan. Other elements include many or all of the following: a diet that is high in alkaline foods, rich in enzymes, & totally sugar-free; herbal formulas & teas; exercise, stress reduction, detoxification, total body massage, reflexology, emotional healing, visualization, static electro therapy, FAR infrared sauna, medical magnetic therapy, nutrition education, dark field live blood analysis, bio-photonic light (soaking up healthy light from the sun), etc.
As time passes & I continue to research cancer, I am more & more aware of the fact that there is no “magic bullet” that wipes out cancer. In every case where I read about someone who has conquered cancer, I find that it is a matter of multiple factors working together that resulted in bringing the individual to victory.
I know God has the power to miraculously heal me & to make me cancer-free, without any medical intervention or any special efforts on my part, but I don’t believe that is His plan for my healing. It is my firm conviction that I am to be obedient in following the path He has set me on to learn about the ways cancer can be defeated through a process that is a combination of multiple factors. I view this new form of treatment as a new weapon added to my arsenal in my fight against cancer. A year ago I may have laughed or at least given a cynical reply to someone who would suggest that I would endorse this form of treatment for my cancer. It sounded ridiculous! Now I know there is scientific evidence to back it up & “over 90% success rate with [the Budwig] protocol with all kinds of cancer patients over a 50 year period.” I’m not laughing now. I’m eating – cottage cheese & flaxseed oil!
I report that I have eliminated the drug, Asocol, completely; I was taking 12 pills a day for ulcerative colitis. The doctor treating me for this condition does not believe the improvement is attributable to the change in my diet; however, I believe it is directly linked to the change in my diet & the addition of digestive enzymes & nutritional supplements. Prior to these changes, I had 1 or 2 flare-ups per year, & my medication was increased yearly.
This same doctor has told me there are no clinical trials that show there is a link between diet & this condition, so that there are no dietary restrictions. Well, I read a book, written by a professor in the Department Physiology & Pharmacology at Wake Forest University School of Medicine. He holds a Ph.D. in biochemistry. The book is based on 6 clinical trials he conducted that show the link between diet & conditions such as arthritis, asthma, allergies, diabetes, heart disease, eczema, inflammatory bowel disease (ulcerative colitis is included in this category), etc.
This emphasizes the necessity of taking an active role in each of my health issues. I now understand how important it is to understand my condition & to learn what I can do for myself, in addition to what my doctor prescribes for me. I have to keep in mind that medical schools do not provide any coursework on diet, nutrition, & nutritional supplements, as they relate to prevention &/or treatment of most diseases/medical conditions.
I’ve done a lot of reading & research on this condition & now know that there is a very strong link between diet & this condition. I first found a list of foods to avoid in another reference book. When I eliminated them from my diet & added the suggested digestive enzymes & nutritional supplements it made a world of difference!! I could eat without feeling nauseous.
Dr. Powers is pleased with the fact that I am off of another prescription drug, as it decreases some of the toxic load on my body.
Dr. Powers is also happy with the continued decline in the tumor marker number. July 8 it was 30.9. He’s been expecting the number to decline into the 20s. It’s getting there, but slowly. He is also pleased with the PET/CT scan results.
I describe the conversation with Dr. Patel concerning the term remission. Dr. Powers shrugs his shoulders & says it’s just a game of semantics. He understands what Dr. Patel is saying about the misuse, misunderstanding & false hope, but it’s a word the public is used to using. I understand that he feels it is the oncologist’s responsibility to make clear the definition of the word remission if he or she uses it with a patient. Several months ago Dr. Powers said he would describe my cancer as in “clinical remission.” From that I understood him to mean that the cancer is stable, from a clinical point of view. It poses no present threat to my life; however, I still have cancer.
Next, I explain Dr. Patel’s proposal of surgery to remove the lymph node that still shows some slight activity. Dr. Powers wants to know why. I explain.
Dr. Patel told us, “The standard of care for advanced disease cancer is changing. If a patient has a very good response to therapy, [such as I have had,] surgery may be considered. Surgery at the origin of the cancer may delay the progression of the cancer if the current activity is confined to that single location.”
I pause & look at Dr. Powers to see how he is responding to this information. I can see tension in his face; it’s obvious that he does not agree.
Of course, Dr. Powers asks what I chose to do, & I told him I said, “No.” I told him what I gave as my reasons & that Dr. Patel agreed with my first reason – the activity is only slight; what I have been doing is working very well; if I continue, it will probably take care of the remainder of the activity in the next few months.
He seemed to shrug off my 2nd argument – having surgery & not removing all cancer is like pouring gasoline on a fire, with respect to the cancer that is not removed.
It is Dr. Powers’ opinion that surgery is still a poor option, for the same reason I gave Dr. Patel. His description of what happens is something to the effect that it causes the remaining cancer to spray, like an aerosol can [my mental picture of his description], cancer cells throughout the patient’s blood stream & is very likely to cause metastases to spring up in other places in the body.
This is more confirmation that convinces me that we made the right decision.
As a part of our conversation, I inform him that my next PET/CT scan will be in November or December, since the tumor marker results have remained stable since December ’08. According to Dr. Patel, my number is in the normal range, but Dr. Powers is waiting for it to drop into the lower 20s. At this appointment, he tells me that if it drops to a number between 10 & 15, he believes I will be cancer-free!! This is an exciting piece of information to know! To that end, he asks me to try a new form of treatment to help me reach that goal. I was anxious to reach the low 20s. Now, I’m psyched about going for the 10 to 15 range!
I’m thinking he’s going to suggest a nutritional supplement. I’m very surprised when he asks me to eat low fat cottage cheese mixed with organic flaxseed oil. Oh, doesn’t that sound yummy? I’m wondering how this concoction is going to kill cancer cells. Some alternative treatments, at least at first, seem rather bizarre!
I tell him, “I don’t consume any milk or milk products, except organic yogurt or yogurt with live cultures, due to my ulcerative colitis.” He explains that I should be able to tolerate the cottage cheese if I can tolerate yogurt. Then I ask him how bad this is going to taste. He tells me that he is a poor judge because his taste buds aren’t that great. I’m thinking ‘Oh, thanks!’
He relates several incredible testimonials of his cancer patients, with advanced stage disease, who are using this regimen & are making miraculous & rapid recoveries. I’m thinking that this sounds good, & I remember reading a book that mentions people using this mixture to beat cancer. The book discusses several alternative cancer treatments patients use to fight cancer. It was the very first book I read that discusses fighting cancer with alternative treatments, & I wasn’t so sure I could trust what I read. This treatment, in particular, seemed to be more than a little farfetched, even though the author states that there are “scientific evidence & documented facts” to back up all of the statements made in the book. Now my alternative treatment oncologist is suggesting that I eat it. He has my attention. I’ll listen, ask questions, & do more research.
To help the taste, he says I can add some agave nectar to sweeten it. A few drops of lemon juice may also help. I ask about adding fruit. He tells me to have fruit before consuming this not with it. He provides an explanation for this. Thanks! He gives me a sheet with the amount of each to mix together & tells me to mix it with a blender so that it is homogenized. I’m thinking this may help to disguise the taste of the flaxseed oil a little.
I ask if I can just take flaxseed oil capsules with cottage cheese. I’m thinking, ‘swallowing that brown oil in capsules would be much easier than eating it off of a spoon.’ The answer is, no. The processing to produce the capsules destroys the beneficial properties of the flaxseed oil. Oh, darn! You can’t blame me for trying though.
As you can tell, I don’t have a positive attitude about how this is going to taste, but I decide it is much better than having to submit to chemotherapy. I can do it. Besides, I only have to eat it as a meal replacement 3 days a week.
Dr. Powers explains a little of the chemistry/biology of what this mixture does to cancer cells & the amazing results! A German biochemist, Johanna Budwig, determined that cottage cheese & flaxseed oil have the correct naturally occurring properties & chemical combination to produce the results she discovered in her laboratory research as having the effect of either killing cancer cells or causing them to revert back to normal cells! This is what sets this treatment apart from all others, which are aimed at merely starving or killing cancer cells. There’s no other treatment known to cause cancer cells to revert back to normal cells. These beneficial properties, of the cottage cheese & the flaxseed oil, are destroyed if they are processed to put their chemical compounds into capsule or pill form. There is no substitute for eating the real deal.
Since he knows I am an avid reader, Dr. Powers asks if I have read about Dr. Budwig & her research. I tell him that I do not remember her name, but I do remember reading about people eating this combination & beating cancer. He writes her name on a sheet of note paper & hands it to me so I can look her up. Does he know me well? Yes!
Of course I will research this to hope to better understand how this happens. I will also pull out the book that presented the testimonials of the folks who used this mixture to beat cancer & re-read it to see if Dr. Johanna Budwig is cited as the individual who came up with this combination for conquering cancer. (As I expected, everything checks out in the book & on the Internet. Johanna Budwig died, at the age of 95, in 2003, but there is a cancer center, in Spain, that bears her name & uses her protocol.)
I bought cottage cheese & Barlean’s organic, highest lignin, pure & unfiltered, cold pressed, flax oil. I tried it first with a little Splenda & a few drops of lemon juice. It was bearable but not very good. I just ate it & repeated to myself, ‘cancer cells are reverting to normal cells.’ By the 2nd week I knew I had to come up with something I could add to it to make it palatable. I found 2 kinds of granola at a natural foods store that are compatible with my diet. I also purchased agave nectar to replace Splenda. Now I like my cottage cheese & flaxseed oil breakfast, with a drizzle of agave nectar homogenized in the blender. I top it off with a generous amount of granola. Yum, yum! I find that I eat it more than 3 times a week. Bye-bye cancer cells!! Hello healthy cells!!
For more information on this form of treatment visit this site: http://www.budwigcenter.com
A closer look at the protocol of the Budwig Center, which is based on Dr. Budwig’s 50 years of research & countless testimonials to back it up, reveals this is one element of a multi-faceted treatment plan. Other elements include many or all of the following: a diet that is high in alkaline foods, rich in enzymes, & totally sugar-free; herbal formulas & teas; exercise, stress reduction, detoxification, total body massage, reflexology, emotional healing, visualization, static electro therapy, FAR infrared sauna, medical magnetic therapy, nutrition education, dark field live blood analysis, bio-photonic light (soaking up healthy light from the sun), etc.
As time passes & I continue to research cancer, I am more & more aware of the fact that there is no “magic bullet” that wipes out cancer. In every case where I read about someone who has conquered cancer, I find that it is a matter of multiple factors working together that resulted in bringing the individual to victory.
I know God has the power to miraculously heal me & to make me cancer-free, without any medical intervention or any special efforts on my part, but I don’t believe that is His plan for my healing. It is my firm conviction that I am to be obedient in following the path He has set me on to learn about the ways cancer can be defeated through a process that is a combination of multiple factors. I view this new form of treatment as a new weapon added to my arsenal in my fight against cancer. A year ago I may have laughed or at least given a cynical reply to someone who would suggest that I would endorse this form of treatment for my cancer. It sounded ridiculous! Now I know there is scientific evidence to back it up & “over 90% success rate with [the Budwig] protocol with all kinds of cancer patients over a 50 year period.” I’m not laughing now. I’m eating – cottage cheese & flaxseed oil!
Tuesday, October 20, 2009
Defining Remission
July 15, 2009. We meet with Dr. Patel in July & I have questions prepared to ask him.
My first question is, “What is my tumor marker number?” It is 30.9. This is a 1.8 point, or 5.5%, decrease. Although I was hoping for a greater drop, I am very happy to see it continuing to drop!
I pose this question: August ’08 I have in my notes that I asked if my cancer could go into remission, & you said, “We don’t use the word remission for stage IV cancer.” Would you still say the same thing?
He smiles as if I’ve made him eat his own words. It was kind of funny. He then explains that the word remission is misused & misunderstood by doctors & patients. He says, “it also gives false hope.” In fact, he says, “the word is rarely used by oncologists today.” He explains that oncologists attempt to use descriptions that can be written in patients’ charts that any other oncologist can read & interpret exactly what is meant by the doctor who writes it. The description he gives to me to replace remission is “near complete resolution with identifiable disease.” This “doctor-speak” makes more sense after I tell you about the rest of the appointment.
Ed & I think we are at this appointment to hear his decision concerning surgery to remove the one lymph node under my left arm that shows some activity. We suspect this won’t be the case. Dr. Patel’s first question to me is, “What have you decided about surgery on the lymph node?” Ed & I look at one another. We are only somewhat surprised; I am prepared with an answer. I have made a decision. Even if Dr. Patel had come in & told me that he wanted to do the surgery, I would have told him I won’t do it. My mind was made up. When I say, “No,” Dr. Patel wants to know why, but he quickly adds that there is no right or wrong answer. He merely wants to hear my reason for saying no.
I had made notes before the appointment so I would not get flustered & sound like someone with flimsy arguments that I had not thought things through, if I had to defend my reason for refusing to have surgery, if I should need to do so. It is interesting that I am not defending my reasons but merely relating them. I have 2 major reasons. Dr. Patel is in 100% agreement with the first reason, but he sees my 2nd argument as a non-issue, which confuses me.
My first reason is simple. There is only slight activity showing in the one lymph node showing activity. What I have been doing, in terms of treatment, has been working very well. I think if I just keep doing what I am currently doing, this last little bit of activity will be history, in the next few months, without undergoing surgery. I get an enthusiastic nod of agreement on this one.
Next, I explain to Dr. Patel that I also decided not to have the surgery because I know there is still undetectable cancer in the areas that no longer show activity, in fact, lots of it. I have my paper with the previously mentioned illustration with me & explain that I am aware of the fact that the imaging technology can only detect tumors of a certain size. He confirms this by stating that the PET/CT can only detect tumors 7mm or larger, which is large enough to be seen by the human eye. (When converted from millimeters to inches, it is just slightly larger than ¼ of an inch.) He says this is why the word remission, as it has been used in the past, gives false hope. He explains that this is the reason for the replacement of the word remission with the description he gave me earlier, to replace the description of a cancer patient whose PET/CT scan no longer shows any evidence of disease – “near complete resolution with identifiable disease.” There is no evidence of disease, but we know there are malignant tumors smaller than the imaging technology is able to detect.
I tell him that I was disturbed by the story of a family member of an acquaintance, with advanced stage cancer, who was told she was in remission because a follow-up PET/CT scan showed no detectable cancer. The family understood this to mean she was cured. She had a follow-up scan a year later, & it showed the cancer reoccurred. The family’s hopes were dashed. They were disillusioned & devastated by the news because they did not understand that remission does not mean cure. (By understanding the growth rate of cancer, her cancer could not have been an entirely “new” occurrence between the 2 scans. The 2nd occurrence was merely undetectable cancer cells growing to a detectable size by the follow-up scan.) Dr. Patel says that is a case in point to illustrate the need to give a better description of the situation.
My question about having surgery, due to having remaining cancer is, “Won’t surgery cause the remaining cancer to grow more rapidly? After my final diagnosis, December 2007, I was told having surgery would be like pouring gasoline on a fire if you are not removing all of it. How has that changed? Is it because I have less cancer now than I did then?”
I don’t get a straight-forward answer, but he doesn’t seem to think it is an issue of great concern. Respectfully, I do. However, it is reassuring to know that Dr. Patel will not consider a scan that shows no activity a sign that I have NO living cancer cells remaining in my body. I learn what I need to know by posing my question & concern.
I ask if it will be another year before I will have another PET/CT scan. Dr. Patel tells me that I will have one in November or December. Because my tumor marker has remained so stable for such a long period of time, it is difficult to determine what is actually happening without a test that is more revealing than the tumor marker test.
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Ed & I have a conversation about the term remission on the way home. He says that he never had the impression that remission equated with cure. As I thought about it I realized that I thought it meant the disease was, for lack of a better word, dormant. If it is dormant, it has the potential to become active again. I guess that means it’s not cured, but I did have the impression that remission was kind of close to cure. I thought someone in remission always had a little fear that the disease could return.
To settle the matter I look it up in Webster’s dictionary to get a formal definition – a lessening or abating of symptoms of a disease. Once I read it I’m not sure that the definition actually settles the matter. This is a bit different from either of my perceptions & somewhat vague, but it surely cannot be construed to mean cure or disease-free.
I check the American Cancer Society definition. Remission: complete or partial disappearance of the signs & symptoms of cancer in response to treatment; the period during which a disease is under control. A remission may not be a cure.
According to these definitions, I think I can define myself as in remission. Praise God!!
My first question is, “What is my tumor marker number?” It is 30.9. This is a 1.8 point, or 5.5%, decrease. Although I was hoping for a greater drop, I am very happy to see it continuing to drop!
I pose this question: August ’08 I have in my notes that I asked if my cancer could go into remission, & you said, “We don’t use the word remission for stage IV cancer.” Would you still say the same thing?
He smiles as if I’ve made him eat his own words. It was kind of funny. He then explains that the word remission is misused & misunderstood by doctors & patients. He says, “it also gives false hope.” In fact, he says, “the word is rarely used by oncologists today.” He explains that oncologists attempt to use descriptions that can be written in patients’ charts that any other oncologist can read & interpret exactly what is meant by the doctor who writes it. The description he gives to me to replace remission is “near complete resolution with identifiable disease.” This “doctor-speak” makes more sense after I tell you about the rest of the appointment.
Ed & I think we are at this appointment to hear his decision concerning surgery to remove the one lymph node under my left arm that shows some activity. We suspect this won’t be the case. Dr. Patel’s first question to me is, “What have you decided about surgery on the lymph node?” Ed & I look at one another. We are only somewhat surprised; I am prepared with an answer. I have made a decision. Even if Dr. Patel had come in & told me that he wanted to do the surgery, I would have told him I won’t do it. My mind was made up. When I say, “No,” Dr. Patel wants to know why, but he quickly adds that there is no right or wrong answer. He merely wants to hear my reason for saying no.
I had made notes before the appointment so I would not get flustered & sound like someone with flimsy arguments that I had not thought things through, if I had to defend my reason for refusing to have surgery, if I should need to do so. It is interesting that I am not defending my reasons but merely relating them. I have 2 major reasons. Dr. Patel is in 100% agreement with the first reason, but he sees my 2nd argument as a non-issue, which confuses me.
My first reason is simple. There is only slight activity showing in the one lymph node showing activity. What I have been doing, in terms of treatment, has been working very well. I think if I just keep doing what I am currently doing, this last little bit of activity will be history, in the next few months, without undergoing surgery. I get an enthusiastic nod of agreement on this one.
Next, I explain to Dr. Patel that I also decided not to have the surgery because I know there is still undetectable cancer in the areas that no longer show activity, in fact, lots of it. I have my paper with the previously mentioned illustration with me & explain that I am aware of the fact that the imaging technology can only detect tumors of a certain size. He confirms this by stating that the PET/CT can only detect tumors 7mm or larger, which is large enough to be seen by the human eye. (When converted from millimeters to inches, it is just slightly larger than ¼ of an inch.) He says this is why the word remission, as it has been used in the past, gives false hope. He explains that this is the reason for the replacement of the word remission with the description he gave me earlier, to replace the description of a cancer patient whose PET/CT scan no longer shows any evidence of disease – “near complete resolution with identifiable disease.” There is no evidence of disease, but we know there are malignant tumors smaller than the imaging technology is able to detect.
I tell him that I was disturbed by the story of a family member of an acquaintance, with advanced stage cancer, who was told she was in remission because a follow-up PET/CT scan showed no detectable cancer. The family understood this to mean she was cured. She had a follow-up scan a year later, & it showed the cancer reoccurred. The family’s hopes were dashed. They were disillusioned & devastated by the news because they did not understand that remission does not mean cure. (By understanding the growth rate of cancer, her cancer could not have been an entirely “new” occurrence between the 2 scans. The 2nd occurrence was merely undetectable cancer cells growing to a detectable size by the follow-up scan.) Dr. Patel says that is a case in point to illustrate the need to give a better description of the situation.
My question about having surgery, due to having remaining cancer is, “Won’t surgery cause the remaining cancer to grow more rapidly? After my final diagnosis, December 2007, I was told having surgery would be like pouring gasoline on a fire if you are not removing all of it. How has that changed? Is it because I have less cancer now than I did then?”
I don’t get a straight-forward answer, but he doesn’t seem to think it is an issue of great concern. Respectfully, I do. However, it is reassuring to know that Dr. Patel will not consider a scan that shows no activity a sign that I have NO living cancer cells remaining in my body. I learn what I need to know by posing my question & concern.
I ask if it will be another year before I will have another PET/CT scan. Dr. Patel tells me that I will have one in November or December. Because my tumor marker has remained so stable for such a long period of time, it is difficult to determine what is actually happening without a test that is more revealing than the tumor marker test.
*******************************************************
Ed & I have a conversation about the term remission on the way home. He says that he never had the impression that remission equated with cure. As I thought about it I realized that I thought it meant the disease was, for lack of a better word, dormant. If it is dormant, it has the potential to become active again. I guess that means it’s not cured, but I did have the impression that remission was kind of close to cure. I thought someone in remission always had a little fear that the disease could return.
To settle the matter I look it up in Webster’s dictionary to get a formal definition – a lessening or abating of symptoms of a disease. Once I read it I’m not sure that the definition actually settles the matter. This is a bit different from either of my perceptions & somewhat vague, but it surely cannot be construed to mean cure or disease-free.
I check the American Cancer Society definition. Remission: complete or partial disappearance of the signs & symptoms of cancer in response to treatment; the period during which a disease is under control. A remission may not be a cure.
According to these definitions, I think I can define myself as in remission. Praise God!!
Tuesday, October 13, 2009
New Option to Consider
May 20, 2009. This is my appointment to go over the results of my May 12th PET/CT scan. (If you are a new to my blogs, I posted a blog that describes what a PET/CT scan is & its significance in May. You may want to read it to understand the importance of this diagnostic test.) I also get my tumor marker number. It is 32.7. This up a tenth of a point from March 23rd, but this is not a significant change. It is more relevant that it remains in the normal range, which is 38.8 or lower. Praise God! (A blog explaining the tumor marker is posted July ’08.)
Dr. Patel explains that the standard of cancer treatment for advanced stage disease is changing. Up to this point the standard has been to not perform surgery on stage III or stage IV cancer patients because it is not possible to remove all of the cancer, due to the fact that it has spread beyond the site of origin.
(To perform surgery & leave known cancer cells is “like pouring gasoline on a fire.” I remember Dr. Patel making this statement to me shortly after my final diagnosis when I inquired about my impending surgery, which he told me was cancelled & I asked him why. He explained that the body’s immune system produces powerful chemicals to aid in the healing process. These chemicals that help the body to heal also stimulate the growth of any remaining cancer cells to a more rapid growth rate & for metastatic cancer, as stage III & stage IV cancer are, more rapid spread of the disease.)
Ed & I are curious; what is this change he’s talking about? If a patient has a very good response to therapy, such as I have had, surgery may be considered. I’m wondering, ‘how can this be?’ He goes on to say, “Surgery at the origin of the cancer may delay the progression of the cancer, if the current activity is confined to that single location,” as mine is at this time. This sounds just like a line from a medical textbook & makes some sense, but I’m still not 100% convinced it’s a good idea. In theory, it sounds like a great idea, but it’s not consistent with the previous information I was given.
I’m mentally trying to make sense of this. My cancer is breast cancer & the remaining location of activity is a lymph node under my left arm. That’s not the site of origin, but that is a single location of activity. I have to make sure I have this straight; so, I ask, “If I have this surgery, will it be a mastectomy & removal of the lymph node, in order to be surgery at the origin & the site of activity, or just removal of the lymph node?” Dr. Patel says it will only be the lymph node since it is a single location of activity.
As noted on the radiologist’s report, this activity is barely visible. Dr. Patel says he has not made up his mind about whether or not I should have surgery to remove this lymph node. He tells us of another patient, with advanced stage cancer, who also has had a positive response to therapy & now has a single location of activity on her PET/CT scan; however, it is a very active lymph node. Without hesitation, he recommended that she have the surgery. Since mine is not so clear-cut, he wants to discuss it again at our next appointment. He will give it additional consideration & asks us to do the same. He asks us to consider that this active lymph node can potentially “seed” other metastases (the spread of the cancer), but he reminds us that there is not a “right” or “wrong” answer.
After all of this focus on the one active lymph node, Dr. Patel asks if I have any other questions. I look over the radiologist’s PET/CT scan report. I see no mention of the malignant breast tissue, the other 3 malignant lymph nodes under my left arm, the numerous malignant lymph nodes behind my breast bone, or the nodules on my lungs; so, I ask why they are not mentioned. After I get my answer, it seems like a really silly question. Dr. Patel says, “That’s because the cancer there is dead!” Oh!!!! Dah!! Praise God!!
I am so thrilled that the PET/CT scan shows only slight activity in only one lymph node! Of course, the tumor marker number is once again confirmed by these results, too. All of my vigilance with taking my medication, following my diet, taking nutritional supplements, exercising regularly, & the prayers of hundreds of people are paying HUGE dividends!!!! Praise God!!!!
Thank you to those who remember me in your prayers! I pray God will bless you for your faithfulness & meet your needs.
As an interesting side note, I ask, “If my cancer diminishes can the stage of it be down-graded from stage IV?” His answer is, “It’s still stage IV; it’s a one way road.”
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We went home with happy hearts!!!! However, we have to give some serious & prayerful thought to the proposal Dr. Patel made. Although Dr. Patel said he would tell us his decision at our next appointment, we know his track record. We might be asked to make the decision. I am already thinking about what I have been told about having surgery if all of the cancer cannot be removed. I cannot divorce my mind from that thought. How can this have changed? I’ll take you through what I know so you can understand why I have reservations. Yes, you are learning more about cancer than you thought you would ever know just as I am learning it as I walk down this path. Perhaps the educational information I share in my blogs will help you or someone you love now or in the future.
The last blog I posted discusses the growth rate of cancer cells & includes a scanned illustration of a growing tumor. The written explanation states that cancer starts as one cell, doubles to 2 cells, then to 4, 8, 16, 32, 64, etc. It continues to double in size every 23 to 209 days. The illustration shows a 1cm tumor, which is the smallest that can be detected by a mammogram (x-ray). In inches, this is slightly larger than 3/8 of an inch. It then shows it doubled in size to 2cm; this is the smallest tumor that can be felt. It is a little larger than 3/4 of an inch. The last doubling shown is 4 cm. This is the average size of a tumor that can be felt. It is a little bigger than an inch & a half. If the cancer is growing at the average rate of growth, doubling in size about every 100 days, it takes approximately 11 years for a tumor to reach 4cm. By the time a tumor is large enough for the patient to feel it he or she has undetected cancer for a long time! Realize there are cancers that grow more quickly & those that grow more slowly. Also, there are factors that can cause the rate of growth to speed up or to slow down, but a complete discussion is a subject for another blog. I considered these facts & realized that although my PET/CT scan shows only slight activity in one lymph node I also know that the multiple lymph nodes, breast tissue & nodules on my lungs still have living cancer cells. The tumors have merely been reduced to sizes that are now undetectable -- smaller than the imaging technology can detect! For this reason, I am uncomfortable with Dr. Patel’s description of the areas that no longer show activity on the PET/CT scan as “dead.” This is misleading, when I know there are undetectable, living cancer cells in these places. I will have to come up with a respectful question or comment to pose about the undetectable cancer cells in the areas that show no activity, for my next appointment, to find out if this was a slip-up or intentional.
I reason: if I have surgery to remove the lymph node that shows slight activity, I still have undetectable cancer in all of the above mentioned places which will be stimulated to a more rapid rate of growth by the surgery. Won’t I be worse off after the surgery than before it? I may seem better off at first, but the remaining cancer will double & become detectable on a future scan & in my future blood test as an elevated tumor marker number. Why would I take that chance when what I have been doing is working so well? Our minds are made up; we both agree. God has been working through the forms of treatment I’ve been doing, & things are going very, very well! We do not feel surgery is part of God’s plan, at this point. It is our sense that I am to keep going on the same path I have been walking on. We are at peace. Praise God!
Dr. Patel explains that the standard of cancer treatment for advanced stage disease is changing. Up to this point the standard has been to not perform surgery on stage III or stage IV cancer patients because it is not possible to remove all of the cancer, due to the fact that it has spread beyond the site of origin.
(To perform surgery & leave known cancer cells is “like pouring gasoline on a fire.” I remember Dr. Patel making this statement to me shortly after my final diagnosis when I inquired about my impending surgery, which he told me was cancelled & I asked him why. He explained that the body’s immune system produces powerful chemicals to aid in the healing process. These chemicals that help the body to heal also stimulate the growth of any remaining cancer cells to a more rapid growth rate & for metastatic cancer, as stage III & stage IV cancer are, more rapid spread of the disease.)
Ed & I are curious; what is this change he’s talking about? If a patient has a very good response to therapy, such as I have had, surgery may be considered. I’m wondering, ‘how can this be?’ He goes on to say, “Surgery at the origin of the cancer may delay the progression of the cancer, if the current activity is confined to that single location,” as mine is at this time. This sounds just like a line from a medical textbook & makes some sense, but I’m still not 100% convinced it’s a good idea. In theory, it sounds like a great idea, but it’s not consistent with the previous information I was given.
I’m mentally trying to make sense of this. My cancer is breast cancer & the remaining location of activity is a lymph node under my left arm. That’s not the site of origin, but that is a single location of activity. I have to make sure I have this straight; so, I ask, “If I have this surgery, will it be a mastectomy & removal of the lymph node, in order to be surgery at the origin & the site of activity, or just removal of the lymph node?” Dr. Patel says it will only be the lymph node since it is a single location of activity.
As noted on the radiologist’s report, this activity is barely visible. Dr. Patel says he has not made up his mind about whether or not I should have surgery to remove this lymph node. He tells us of another patient, with advanced stage cancer, who also has had a positive response to therapy & now has a single location of activity on her PET/CT scan; however, it is a very active lymph node. Without hesitation, he recommended that she have the surgery. Since mine is not so clear-cut, he wants to discuss it again at our next appointment. He will give it additional consideration & asks us to do the same. He asks us to consider that this active lymph node can potentially “seed” other metastases (the spread of the cancer), but he reminds us that there is not a “right” or “wrong” answer.
After all of this focus on the one active lymph node, Dr. Patel asks if I have any other questions. I look over the radiologist’s PET/CT scan report. I see no mention of the malignant breast tissue, the other 3 malignant lymph nodes under my left arm, the numerous malignant lymph nodes behind my breast bone, or the nodules on my lungs; so, I ask why they are not mentioned. After I get my answer, it seems like a really silly question. Dr. Patel says, “That’s because the cancer there is dead!” Oh!!!! Dah!! Praise God!!
I am so thrilled that the PET/CT scan shows only slight activity in only one lymph node! Of course, the tumor marker number is once again confirmed by these results, too. All of my vigilance with taking my medication, following my diet, taking nutritional supplements, exercising regularly, & the prayers of hundreds of people are paying HUGE dividends!!!! Praise God!!!!
Thank you to those who remember me in your prayers! I pray God will bless you for your faithfulness & meet your needs.
As an interesting side note, I ask, “If my cancer diminishes can the stage of it be down-graded from stage IV?” His answer is, “It’s still stage IV; it’s a one way road.”
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We went home with happy hearts!!!! However, we have to give some serious & prayerful thought to the proposal Dr. Patel made. Although Dr. Patel said he would tell us his decision at our next appointment, we know his track record. We might be asked to make the decision. I am already thinking about what I have been told about having surgery if all of the cancer cannot be removed. I cannot divorce my mind from that thought. How can this have changed? I’ll take you through what I know so you can understand why I have reservations. Yes, you are learning more about cancer than you thought you would ever know just as I am learning it as I walk down this path. Perhaps the educational information I share in my blogs will help you or someone you love now or in the future.
The last blog I posted discusses the growth rate of cancer cells & includes a scanned illustration of a growing tumor. The written explanation states that cancer starts as one cell, doubles to 2 cells, then to 4, 8, 16, 32, 64, etc. It continues to double in size every 23 to 209 days. The illustration shows a 1cm tumor, which is the smallest that can be detected by a mammogram (x-ray). In inches, this is slightly larger than 3/8 of an inch. It then shows it doubled in size to 2cm; this is the smallest tumor that can be felt. It is a little larger than 3/4 of an inch. The last doubling shown is 4 cm. This is the average size of a tumor that can be felt. It is a little bigger than an inch & a half. If the cancer is growing at the average rate of growth, doubling in size about every 100 days, it takes approximately 11 years for a tumor to reach 4cm. By the time a tumor is large enough for the patient to feel it he or she has undetected cancer for a long time! Realize there are cancers that grow more quickly & those that grow more slowly. Also, there are factors that can cause the rate of growth to speed up or to slow down, but a complete discussion is a subject for another blog. I considered these facts & realized that although my PET/CT scan shows only slight activity in one lymph node I also know that the multiple lymph nodes, breast tissue & nodules on my lungs still have living cancer cells. The tumors have merely been reduced to sizes that are now undetectable -- smaller than the imaging technology can detect! For this reason, I am uncomfortable with Dr. Patel’s description of the areas that no longer show activity on the PET/CT scan as “dead.” This is misleading, when I know there are undetectable, living cancer cells in these places. I will have to come up with a respectful question or comment to pose about the undetectable cancer cells in the areas that show no activity, for my next appointment, to find out if this was a slip-up or intentional.
I reason: if I have surgery to remove the lymph node that shows slight activity, I still have undetectable cancer in all of the above mentioned places which will be stimulated to a more rapid rate of growth by the surgery. Won’t I be worse off after the surgery than before it? I may seem better off at first, but the remaining cancer will double & become detectable on a future scan & in my future blood test as an elevated tumor marker number. Why would I take that chance when what I have been doing is working so well? Our minds are made up; we both agree. God has been working through the forms of treatment I’ve been doing, & things are going very, very well! We do not feel surgery is part of God’s plan, at this point. It is our sense that I am to keep going on the same path I have been walking on. We are at peace. Praise God!
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