This is the story of my continuing encounter with Cancer. See below for recent updates.

I had an insurance physical in October of 2004 at the age of 60. The blood work revealed an elevated PSA, and my doctor immediately referred me for both a prostate checkup and a colonoscopy.

The next 60 days were a very dark time. During a prostate exam, the urologist discovered a tumor in my rectum. I then had positive prostate and colorectal biopsies and an unsuccessful surgery on January 13, 2005 (the tumor was too deeply involved to be removed by the type of surgery being performed). I was told by the surgeon and his urological partner that I should have both my rectum and my prostate removed. This procedure would leave me with a permanent ostomy. My personal physician, Dr. Frank Kane recommended that we seek a second opinion.

Subsequently, I was referred to Dr. Ephraim Casper, a Medical Oncologist specializing in gastro-intestinal cancers at Memorial Sloan Kettering Cancer Center in Denville, NJ. The day I walked into his office things began to turn around. He sat with my wife, Linda, and I for at least an hour, exploring my case history and explaining possible treatments. His first gift was to let us know that he was confident that both cancers were treatable, giving us real hope for the first time in two very dark months. He suggested I see Dr. W. Douglas Wong at MSKCC Manhattan, for a consultation and an Endorectal Ultrasound (ERUS). Dr. Wong's ERUS reading stated that my tumor was T3 and the lymph nodes looked normal. I saw Urologist Dr. Bernard Bochner at MSKCC in Manhattan. Dr.s Wong, Casper and Bochner recommended two months of radiation and chemotherapy followed by surgery to remove the tumor and repair the rectum. After surgery, there would be 4 more months of chemotherapy, followed by brachytherapy for the prostate. They based their decision on both sound medical data and on my age and life style. Dr. Casper stated that my cancer should not affect my lifespan. I became committed to make that prognosis true.

I breezed through the first 6 weeks of radiation and chemo, but the last two weeks caught up with me a bit. Dr. Wong performed the surgery at Memorial Sloan Kettering Hospital in Manhattan on June 10, 2005. The results confirmed Dr. Wong's initial ERUS. The tumor was T3 and Dr. Wong was confident that he had removed all of the malignancy. The pathology report showed the lymph nodes were normal. Make no mistake, a Low Anterior Resection with an ileostomy is major invasive surgery. The post operative pain is significant, and it might be easy to fall into a pit of despair if you do not enjoy the good fortune to have a wonderful group of family and friends behind you. I owe so much to my wife, Linda, our children, our extended family and so many wonderful friends who would not let me have a moment to feel sorry for myself.

I went back in to MSKCC in Manhattan for reconstructive surgery on Dec. 9. Dr. Wong reversed my ileostomy and removed the IV port. The surgery went very well and I was released on Dec. 12 to recover at home. I can only reiterate my positive experience at Sloan Kettering. The staff is very professional and compassionate.

To me, the lessons are many: Be serious about your preventive medicine, be aggressive with your cancer screening, especially if you have any family history. Pay attention to your diet, explore anti-cancer foods and supplements and research the foods you eat. Eliminate things that are high risk. If you are diagnosed with cancer, rely on family and friends and let them be involved. It helps everyone to help and be helped. Finally, if you are diagnosed with cancer, get a second opinion from someone who has a real track record with your disease before you submit to any treatment or surgery. If you have any doubt about a prognosis or treatment protocol, resolve it first because your own confidence is as important to your recovery as the treatment itself.

Finally, to all you wonderful family, friends and incredible professionals at Sloan Kettering who channeled so much love and support during the most difficult times, my sincere gratitude. It is love like yours that makes life worth living.

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1-23-2011 - With sincere apologies for the lateness of this update, here is the latest on my status.

First, I am deeply saddened to report that Dr. W. D. Wong has stopped seeing patients due to ill health. He is a wonderful man, and provided amazing skills and leadership in the handling of my case from the beginning until his recent illness. Please include him and his family in your thoughts and prayers.

A new lesion on my left lung was detected in Jan 2010. It was metastasis from the original colon cancer. I think it is important to note that after this new lesion appeared, I started a new regimen of exercise and diet discipline. I have made a strong effort to follow Dr. David Servan-Schreiber's recommendation of at least 70% organic foods, and limit red meat to 11 oz./week. I also eliminated almost all sugars and fats, and do not consume any sodas or sweetened beverages. After three months of this diet, I had lost about 20 pounds. I did not feel at all deprived. As you will see, this may have had a lot to do with the positive outcome of my surgery in Sept. 2010. (See http://www.anticancerbook.com/rules.html).

A CT scan in Jan 2010 revealed a small (1.2cm) new lesion in the upper lobe of my left lung. We watched it for a few months and when it had doubled in size (2cm) by June, we sheduled surgery for Sept. 2. Dr. Downey, told me the cancer appeared aggressive and it was likely that he would have to remove the entire upper lobe, which would be between 20 and 25 percent of my lung capacity. I will keep the following brief.

In short, the surgery went extremely well. Dr. Downey said the surgical team cheered when the lesion appeared on the scope because it was well isolated on the anterior portion of the lobe. Thus, Dr. Downey was able to save half of the upper lobe. The surgery took about 2.5 hours, and I remember waking up and not feeling too bad at all. No one can say for sure that my diet change had anything to do with the fact that the tumor appeared to have weakened, but I am sure glad that it did.

The next morning I woke early and walked a mile (14 laps of the 6th floor). Dr. Downey had to chase me down in the hall to discuss the status. He felt I would be able to go home the next day. I thought that was great and woke up Sat. AM anxious to get out of there. However, a final x-ray revealed a bubble in the chest cavity, so they had to insert a chest tube to deflate the bubble. The procedure did not go well, and the lung collapsed. This painful setback kept me in the hospital for 3 more days.

As far as exercise is concerned, I think a vigorous schedule was very beneficial. Prior to the surgery, my measured lung capacity was a bit over 4000ml. The norm for a male my age is 2800ml. After the surgery it took a few days for me to get to 3000ml, but as of today I am back to 4000ml. I think that playing racquetball for 4-6 hours per week has a lot to do with maintaining a high level of lung capacity. I also work out at home at least 3 days per week, trying to burn 1200 to 1800 calories in those 3 workouts.

My last check up in November revealed good blood work. I am scheduled for a CAT scan, blood work and a complete physical in February, and will post results here in March. I have also been using Caring Bridge to post updates. You can access this site at www.caringbridge.org/visit/davebarnes

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7-4-2009 - I had my follow up with Dr. Casper this week and his recommendation is to continue on close monitoring for now because there is no sign of any additional cancer at this time. He does not feel any chemotherapy is called for. I am scheduled for a CAT scan in October. Meanwhile, as I hope you all will be doing, I will concentrate on enjoying the summer and try to get in some traveling among other things. I will update any changes here, and will also update the Caringbridge site at www.caringbridge.org/visit/davebarnes.
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6-24-2009 - I could never say enough about the quality of care at Memorial Sloan-Kettering. Everything related to the surgery went flawlessly. I reported for admission at 5:30 AM on June 11. After signing in, we sat in a waiting room on the 6th floor for about 5 minutes before a nurse came to take me into the prep ward. I undressed and within 10 minutes another nurse came in to take vital signs and set up an IV. They then brought Linda and Heather in to wait until time to go to the OR. Another 15 minutes passed and the anesthesiologist came in to put the epidural catheter in my spine. They gave me a light dose of anesthetic and I vaguely remember him asking me to sit with my shoulders forward. I do not remember much else except being wheeled into the OR. The next memory is waking up in Recovery. I was pretty woozy and nauseated, but there was nothing in my stomach, so I just had cramping and contractions for a few minutes. I was in Recovery for about 2-3 hours and then moved to the room. I tried to drink some ginger ale, but was still nauseated. I tried to eat a liquid dinner, but I couldn't get much down because I was still nauseated. I think the nausea was from the spinal anesthetic.
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The doctor had originally said 3-5 days, maybe 2 if everything was perfect. So I was very pleasantly surprised Friday morning at 7:30 AM when the doctor came in to examine me. I was sitting up, reading and he seemed a bit surprised. There was a chest tube in between the 3rd and 4th rib, but there was very little drainage and the doctor said to take it out, there was no need for it. So out it came. He also removed the spinal catheter. After checking me, he said there was no reason to stay, and he made the order to release me after 1 day! By the time the paper work was done, it was after 2pm, but we were home by about 4:30.

The pathologist took one look at the nodule and said it was colon cancer. That was confirmed by testing, and that is very good news. If it had been new lung cancer, the prognosis would not have been very good, and it would have required additional surgery to remove the entire lobe of the lung. So, the outlook is very good, PET, Bone, x-rays, and CAT scans could not find any additional nodules, and the surgeon said he had explored both lungs and could not find any abnormalities.

I had been warned of the post-surgical pain, and it was pretty uncomfortable. The worst was sneezing, which was excruciating. I only sneezed 4 times in the first 10 days, but I remember each one of them very well.

Next on the agenda are a visit to the city to see the surgeon on the 26th for an x-ray and exam to make sure there is no leakage from the lung. I am sure there is no problem there, I am able to do breathing and range of motion exercises with no pain. Then I see Dr. Casper on the 30th to discuss the future plan. I will update here after getting results from Dr. Casper

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5-25-2009 - I apologise for the tardiness of this update. I had a regularly scheduled CAT scan on April 14, and a follow-up visit with Dr. Casper on April 21. Confident that this would be my last 6 month follow-up, I was a bit disappointed to learn that the CAT scan revealed a new lesion on the upper lobe of my right lung. Dr. Casper expressed a positive view based on my original diagnosis and that almost 5 years have passed since my original diagnosis. He ordered a bone scan and a biopsy. I had the bone scan at Saint Clare's in Dover. The radiologist reported some abnormalities in my lumbar and cervical spine, so Dr. Casper ordered a series of x-rays to be done during the biopsy. The biopsy was done at Memorial Sloan-Kettering Hospital in Manhattan on May 5. I saw Dr. Wong on May 10, and he gave me the report that the biopsy was cancerous, and probably related to the original colon cancer. He referred me to Dr. Downey, a thoracic surgeon, whom I met on May 14, and scheduled surgery for June 11 to remove the lesion. The x-rays revealed arthritis, and a PET scan showed no other areas of concern except the lesion. So, the surgery on June 11 will be done at MSKCC in Manhattan as a VATS assisted wedge resection, which will remove the lesion and surrounding area. If the pathology report confirms the biopsy as colon cancer related, that will conclude the procedure. However, if the pathology report shows a new lung cancer, then Dr. Downey will go back in to remove the entire upper right lobe. So, that is how things are. The prognosis is good and I am working out to get into shape and maximize lung capacity before the surgery. I will update here when I return from the hospital, sometime during the week of June 15th.

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9-27-2008 - I had an examination with the medical oncologist this week and blood work. The results are very encouraging. CEA dropped to 3.4 and PSA dropped to 2.16 from a high last year of 2.54. The examination was very good and Dr. Casper was happy with my physical condition. He recommends a CAT scan and re-exam for March 2009. The normal interval for post treatment CAT Scans is 3 years, but since I have had 2 separate pelvic cancers, Dr. Casper does not want to take any chances. I am scheduled to see Dr. Wong next week to examine the colon surgery. So, best wishes to all of you who read these updates, and please make that appointment for your own screening and avoid an experience like mine over the past 4 years!

6-21-2008 - Apologies again for the late update. The CAT scan was "unremarkable," which is medspeak for negative, which is good. I had a PSA at MSK this week and the result shows a 20% decrease. That is good news because the PSA had doubled twice since March of 2007. This is a relatively common experience for people who have had brachytherapy. Generally, some patients experience a spike in PSA between 19 and 24 months after the surgery. So, this seems to be the case for me. I will return for a follow-up in September.

Meanwhile, I am still a Patient Advisor at MSK and I have started working with the Prostate Cancer Coalition of New Jersey. I was invited to be a delegate at the LiveStrong Summit by the Lance Armstrong Foundation. The event will be from July 25 to July 29 at Ohio State University in Columbus OH. This event will focus on building organizations to advocate legislation, research, and patient services throughout the US.

Please have a great and healthy summer!

3-15-2008 Sorry for the delay in posting here. I had a check-up with the Medical Oncologist this week The physical exam and my condition are excellent. However, the blood work was mixed. CEA, a tumor marker for colon cancer, is improved; about a full point lower than last September. The PSA has increased a bit, which prompts further testing. I will be having a CAT scan and a bone scan within the next few weeks, and will post their results here as soon as I get the reports.

11-1-2007 Wow! Time flies. So much has happened in the months since the last update.

The first and most important is that my wife, Linda and our daughter, Kristie both survived a very serious accident on Sept. 10. They were struck from behind by an out of control Dodge Ram while stopped, off the roadway, on the Garden State Parkway. Kristie was severely shaken up and had muscle strains and a badly bruised clavicle. Linda was seriously injured. Her spleen was ruptured and she had two emergency surgeries to stop internal bleeding. She was hospitalized for 10 days and is now home. She is doing very well after a month and a half of difficulty. She lost quite a bit of blood and part of the struggle has been getting her blood chemistry back in balance. Thank God they both escaped, the car was destroyed and it took emergency services over half an hour to cut Linda out of the wreckage.

On the cancer front, the latest tests are all below thresholds of concern. One blood factor (PSA) has been slowly trending upward, but seems to have leveled off. This is a relatively common occurence with brachytherapy. We will check it again in December.

Otherwise, our September Survivor Summit, a project of the Lance Armstrong Foundation, was very successful, and we are looking forward to planning our next event. Meanwhile, I remain active as a patient advisor at Memorial Sloan-Kettering Hospital in Manhattan, and I continue to work with the Patient Services Planning committee there, as well as the Post Treatment Resources team.

The next update will be in December. Happy Holidays!

4-10-2007 A follow-up visit with Dr. Wong yesterday included a scope of the surgery site. All looks fine. There is a surgical staple emerging, but that is normal and should not be a problem. The healing from the reconstruction surgery is very good, and I will not need another exam until October. The next appointment with Dr. Casper is late August, so I have a spring and summer off! I will be providing some updates on news involving Sloan Kettering activities and the Lance Armstrong Foundation. You can check out our Cancer Advocacy Summit meeting at www.canceradvocatescoalition.org. Feel free to register and attend if you are interested, or refer the site to any cancer patient or their family.

3-5-2007 Just to update on the back pain and swelling. All blood work, xrays, CAT and Bone Scan were negative. The pain started to diminish about a week ago, and the swelling has reduced significantly. Although the source has not been clearly identified, it seems to have been a torn oblique or intercostal muscle in the lower right rib cage. So, all is well and I am back to full speed.

2-9-2007 Back in August of 2006, after being invited to the LiveStrong Summit I decided to apply to become a patient advisor at Memorial Sloan Kettering Hospital. Patient Advisors are referred to newly diagnosed patients or patients facing surgery to help build their confidence and to relate to them first hand experience in what they are going to be dealing with during treatment and post treatment life. I contacted the director of Volunteer Services and had an interview in September. The Patient to Patient program is very impressive, and very strict in adhering to HIPA and MSK policy. MSK Hospital in Manhattan admits more than 21,000 patients per year. There are approximately 50 patient advisors in the program. I had a subsequent interview with the Social Worker who is assigned to the Colo-Rectal service where I had my surgery. Subsequently, I attended a certification class with nine other volunteers who are survivors of various types of cancer. After that training session, I had blood work to confirm my immunities to common communicable diseases, such as measles, chicken pox, etc., and a TB test. The blood work came back indicating that my immunity to measles is not sufficient, so I have to have an inoculation and then be retested after 4 weeks.

Meanwhile, the Director of Volunteer Services called to let me know she would like to recommend me to the MSK Strategic Planning Committee to help plan their Patient Services through the year 2025. I think this committee work is very consistent with the work I am doing with the Lance Armstrong Foundation and I was happy to agree to be involved. I spoke with the Committee Chair this week and will be involved in a conference call later this month with the entire committee.

One little hiccup that has been the cause of some personal concern is a steadily increasing pain and swelling in my lower right back and rib cage area. I had a rather severe collision on the racquetball court late in November, and after a couple of weeks, I noticed some lingering pain that ultimately increased to the point I could not sleep. When I noticed swelling in the area, I went to see my GP, who prescribed xrays, which turned out to be negative. That led to a CT scan which came back normal as well. Blood work looked good, which eliminates serious kidney or liver injury, and blood work during an appointment with my medical oncologist pretty much ruled out any cancer related issues. So, I saw a surgeon, who has ordered a bone scan to see, among other things, if there might be a rib injury that did not show up on the xray. So, as of today, I am waiting for the bone scan.

1-23-2007 Blood work and follow-up with Dr. Collini, the urologist went well. PSA came down about 20% to 0.65. The follow-up with the medical oncologist was moved to Jan. 31, so I will update again next week.

12-23-2006: A quick note on a December checkup. I saw Dr. Wong and he examined and scoped the surgery site. All looks good. I also met with the Director of the Patient to Patient advisory program at Sloan Kettering. I will be working with the Social Workers at Sloan Kettering to counsel patients in the Colo-Rectal Service. I have to attend a certification class in January. I am looking forward to working with new patients and those on extended treatment and Ostomy cases.

11-8-2006: This note is about the Lance Armstrong Foundation Summit that was held on Oct. 27, 28 and 29. The LAF researched over 2000 cancer survivor stories and invited 700 of us to participate in the Summit. I feel it was a great honor to be included. This amazing meeting was focused on developing a broad based program to support both cancer research and cancer patients, from the newly diagnosed to those in treatment, recovery and maintenance. This event was so well organized and both extremely inspiring and educational. Please refer to www.laf.org for details, and look here for new information as it develops. Lance Armstrong attended and opened every session, and his hands are obvious in all the planning and execution. If you are interested in contributing to a cancer charity, this is a wonderful place for your investment.

Update 9-19-2006: Good feedback today from the radiation oncologist. He had the CAT scan report from August, and the reading is very good; for both the chest and abdominal view there is no metastatic disease, the implants, the surgery site, liver, kidneys, etc., all look good. I will see the medical oncologist on Friday, then have some time off until the next appointment in December with Dr. Wong.

Update 9-7-2006: No medical news since last report. I will see the medical oncologist and the radiation oncologist this month. The big news is that I have been invited to be a delegate at the Lance Armstrong Foundation Summit meeting on October 27-29 in Austin, TX. This is their first national meeting to set up a Cancer Patient Survivor Program. I am looking forward to participating and hope to see a strong organization come out of this effort. You can visit the Foundation's web site at www.laf.org. They offer a wonderful resource for newly diagnosed patients. It is the Survivor's Notebook. It is offered free of charge except for a $7.00 charge for shipping, and I highly recommend it.

Update 8-11-2006: August blood work is good. CEA was .9, anything under 2.5 is good. CAT scan was done Aug. 1, will get results in September when I see Dr. Casper. I saw Dr. Wong this week and he scoped the surgery site. It looks good :-). I will see Dr. Wong again in December.

Update 7-30-2006: After being appropriately reprimanded for not posting updates here, I will try to make monthly updates from now on. The past two months have been absorbed in coaching American Legion Baseball. Our team did well and made it into the state tournament. We won our first two games, but lost the next two. So, we didn't make the final eight, but we were close and the games were very exciting. Medically, I had a checkup with the radiation oncologist. Things look good. He would like the PSA to be lower than 1.0. It was 1.6 at the last blood test. However, it is still well below the guidelines, and may be affected by the surgery trauma and scar tissue. In any event, it is not a major concern at the current level. Coming up in August are a checkup with Dr. Wong, more blood work, and a CAT scan the second week of August. I will report the results here, but may be delayed due to being out of town the last two weeks of August. I hope you all enjoy the rest of the summer!

Update 6-7-2006: This week was my first post surgical colonoscopy. The gastroenterologist was very complimentary regarding the surgery and reconstruction done by Dr. Wong. The initial results were very positive, and he took a biopsy as a routine measure for my condition. The results will be available in about a week. Otherwise, things are very good. I played in a three day golf tournament last weekend, and am coaching American Legion Baseball. We have four games a week, so that is keeping me pretty busy. The shingles symptoms are completely gone except for some slight scarring on my left chest, shoulder and back. I am convinced that vigorous workouts minimize the negative affects of nerve damage that can result from shingles. I have no post herpatic neuralgia.

Update 4-5-2006: Things have been improving steadily as far as recovery is concerned. Dr. Wong thought it would take 3 months for recovery from the December 9 surgery and that seems to be on track. The only serious setback so far is a case of shingles that popped up as a sore throat on March 15 and became a visible rash on my chest on March 19. Fortunately, I was able to get into the doctor right away and was diagnosed and given anti-viral medication. It took about 2 weeks for the rash to heal, and about 3 weeks for the pain to subside. The next update will come after an exam by Dr. Wong on April 17.

Update 2-21-2006: Today was implant day and things went well. The worst was the day before due to fasting and purging my digestive system. I was in the hospital at 6:30, surgery at 7:30, in recovery by 9, followed by xrays and a CAT scan and then out of there by noon. I have to have a catheter for 48 hours and will be done with treatments after this one. I will be seeing the oncologist in March for monitoring, and will let you know the results here. My deepest gratitude to all of you for your support, kind words, and a few rather pertinent hospital jokes. I couldn't have made it to here without you all.

Update 2-4-2006: I had the CAT scan yesterday and all went well (if you think a couple of catheters being inserted is no big deal). Good news is that the PSA test came back with a level of 1.06. The last CEA test came back "undetectable". So, the prognosis continues to be very good. Still, the message to all of you is to get your screening done early and avoid a treatment protocol like mine, this experience has made for a very tough 15 months, including 5 surgeries. I would much rather have been playing golf!

Update 1-25-2006: Implant surgery is scheduled for Feb. 21. The implants are about the size of a sesame seed. They will place between 40 and 80 seeds, which will be determined after a CAT scan that will map the site. The seeds are permanent, and have a half life of about 60 days. So they will be virtually inert after 18 months.

Update 1-15-2006: I saw the radiation oncologist on Jan 13. He will meet with Dr. Wong and Dr. Casper to discuss when is the best time to do the implant process. If Dr.s agree with a February schedule, I will start the preparation process three weeks before the implant surgery. So, there should be a date for the procedure sometime this week after their consultation.

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Copyright © 2006-9, Charles D. Barnes
Revised: January 23, 2011