The doctor from U of M seemed to lay it out straight — he considers me as currently in remission, No Evidence of Disease (NED)!
Carcinoembryonic Antigen (CEA) is a substance found in blood that is used to assess whether a colon cancer patient has tumor activity. The normal level for CEA is 0 to 3. High levels of CEA are usually associated with tumor activity (link to more info on CEA). In my case the CEA levels were tested at various points before and after surgeries. The results of these tests are summarized below:
The latest CEA level was 3.1, slightly above the 0 to 3 normal range.
[For those of you thinking it… yes, this really wouldn’t be “Phil’s Blog” if it didn’t have at least one chart… Smile]
An additional test the doctor did was a chest/lung CT scan. As he explained it, the U of M CT scan was a much more granular scan than the Battle Creek hospital had historically done (0.8 MM vs. 5 MM slices). He also warned us that it is not uncommon for the more granular scan to pick up small lung nodules that are NOT cancer – I guess he didn’t want us to panic in the event that he found additional small nodules. The results of this more granular scan = ALL CLEAR, No Evidence of Disease (NED)!
It is important to keep a good perspective when battling cancer. Fighting cancer is more analogous to running a marathon rather than sprinting a mile. That means that recurrences can happen but even if they do happen the war is NOT lost!
With surgery as the only treatment (no chemotherapy) the U of M doctor estimated the probability of a recurrence as high (around 70% chance). With chemotherapy the probability of a recurrence would certainly be reduced. However, the amount of the reduction is not exactly known. He extrapolated from studies that are not directly applicable to my case and estimated that with chemo there was a 50% chance of recurrence (therefore a 50% chance of NO recurrence!).
If you search the web, stage IV colon cancer five year survival rates are estimated between five to nine percent. You may also read that stage IV colon cancer is treatable but not curable. We asked the doctor about these statistics. The doctor explained that those estimates are based on dated research (ten year old studies). Additionally, most of the research is based on elderly patients who were also suffering from other disease and/or poor health. He did not believe these statistics are current nor are they relevant to my situation. Unfortunately, there just isn’t current data available that directly relates to my case; so in some ways we are sailing in uncharted waters. There are different degrees of stage IV colon cancer. Some cases involve many tumors in multiple organs. Certainly these cases are much more challenging than my situation which involved solitary tumors. We also discussed contingencies. If the cancer recurs there is a high probability that it would continue as a solitary tumor and that it would be treatable with an additional surgery.
He stated strongly that he believes stage IV colon cancer CAN BE CURED. And further stated that he believes he can cure me of this disease (between 40 to 60% chance!). So we have placed our trust in this doctor and are following his treatment!
Additional topics discussed with the doctor included exercising and eating healthier! I’ll say more about these in a future post.
As of 6/28/2012, I have been walking a LOT (even through two surgeries in three weeks). I’ve been eating healthier (fish, chicken, vegetables, fruit, smaller portions, etc.). I’ve lost over 20 lbs. I’ve started chemotherapy treatment. I have you all praying for me! The LORD has been with me every step of the way! Jesus will continue to walk beside me and give me strength! I feel your love and positive energy flowing my way!
I thank God for all these blessings! I thank you for your Prayers and Positive Energy and Love! I pray that God will bless each of you and let his Light shine upon you and your families today and forever! Amen!
All, as you probably already know, I started this blog to update you all on my fight with cancer and to request your prayers and positive energy as well. I posted some historical updates on the blog. If you wanted to review these past updates, I recommend scrolling to the bottom of the blog and reading the articles from bottom up as that is the chronological order of the updates. At a minimum I recommend reading the “welcome to my blog” posting first.
Once you have read the past postings, the best way to keep up on new postings is to “Follow” the blog. This is done by selecting the “Follow” option in the lower right corner of the screen and entering your email address. If you follow the blog, you will receive email notifications on new postings and comments.
You can access the full blog with all the posts via the following link: http://PScamihorn.me
Also, please feel free to comment on the posts. I’d love to hear your thoughts or at least know that someone is reading the updates.
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My lung resection surgery fell on a weekend that my 12 year old step-son’s baseball team was playing in a tournament. Even though I followed the Marlins via play-by-play text messages as they hit home runs and won games, this was the first time that I actually missed watching them play. The Marlins earned a second place finish in that tournament; losing the championship game by one run.
Last year the Marlins started playing in a new league. They faced much tougher competition than they had played in the past. It’s not uncommon for a team facing more challenging opponents to lose their heart; however, the Marlins simply hung in there and played through the down times and stayed focused on improving their skills with each game. The trophy they won was an important achievement as it was the first placement they made since moving up to the tougher league.
When my step son came home from the game he was carrying a team picture, team-autographed game ball, and a rather large second place trophy. At first I thought wow, that’s a big trophy. Then I realized there was only one trophy that large – that was the “team’s” trophy.
He handed me the team’s trophy, the team-autographed ball, and the team picture. He said “the team wanted you to have the trophy.” He continued to explain that the team dedicated their games to me and wanted to fill a trophy cabinet up for me.
This made my heart grow two sizes. I had to work to hold back the tears. Having this wonderful group of boys dedicating their games to me was a very moving gesture. They are such a great group of boys and the fact is that they missed me at their games; and wanted me to know that they were thinking about me and caring about me.
And they are continuing to make true on their promise to fill a trophy cabinet for me. They are tougher and more experienced players this year. In their last three tournaments they have taken two second place trophies and one first place trophy.
I am both honored and humbled that they have dedicated their games to me. And I’m taking the persistence and patience they have shown over the past couple of years as a personal lesson to me. The lesson that the Marlins have exemplified is what I must do as I face cancer.
No matter what the predicament — never give up.
No matter what adversity — sustain and endure.
From the bottom of my heart,
Thank You Marlins!!!
First we met with the local oncologist on June 8, 2012. His recommendation was FolFox chemotherapy regiment for six months + radiation therapy + Avastin (an additional expensive chemo drug). He also wanted to do a PET scan before beginning chemo to see if there was any other evidence of disease. We reminded him that we just completed the chest, pelvis, and lung CT scan on May 21st (about two weeks prior) and questioned why he would want to do another scan so soon, and why a PET scan and not a CT. He suggested that the PET scan could pick up smaller nodules than the CT scan — per his report the CT scan could detect 10 mm nodules whereas the PET scan could detect 5 mm nodules. We asked why the PET scan done on Feb 17 didn’t detect the colon tumor as it supposedly was a scan from the base of the skull to the mid-thigh and that tumor was much bigger than 10 mm. He didn’t know why it didn’t show up on the scan. We also reminded him that even the lung nodule was not consistent with cancer per the Feb 17th PET scan and asked why we would expect different results now. Keep in mind that PET scans involve injecting a nuclear die into the subject’s veins. The technicians stand on an opposite side of a lead wall while administering this scan. One needs to consider the toxic implications as well as the expensive costs vs. the potential benefits. Additionally, we learned that healing scar tissues (from recent surgeries) would likely light up the PET scan and make it difficult to read as well. We are not the doctors, however, I am learning that one needs to take a keen interest in their health and question the decisions and recommendations of the doctors. After this June 8 meeting we were resolved to get a second opinion.
The time for the second opinion came on June 12. We went to meet with an oncologist from University of Michigan Comprehensive Cancer Center. This oncologist differed in opinion with the local oncologist. He suggested that Fulfox for six months was the only treatment he would recommend. He said there was NO evidence that Avastin would help in my case (Avastin is usually used when there is a non-operable tumor that they are trying to kill/shrink with chemotherapy). He also reported that given the location of the colon tumor that radiation therapy was not an option. He also differed in opinion about the PET scan. Instead of a PET scan he ordered another CT scan of the chest to serve as a baseline. The difference between the CT scan at U of M vs. the CT scan done in Battle Creek was the resolution of the imaging. The U of M imaging was done at .8 mm slices whereas the Battle Creek imaging is done at 5 mm slices. This would give him greater visibility to any nodules that may be small and beginning to grow.
Another comparison of the two doctors is the amount of time they took with us. We recorded the meetings so we could review and make sure we fully understood everything that was discussed. The Battle Creek Oncologist spent a whopping 8 minutes with us whereas the U of M oncologist spent over 45 minutes making sure all our questions were answered, including many questions we didn’t even know to ask. He took the time to thoroughly cover the chemotherapy treatment. He also talked about contingencies and what the data shows and doesn’t show regarding treating colorectal cancer. He also discussed diet and exercise, and what the data shows about this regarding cancer.
Another key point the U of M oncologist made was that Stage IV colorectal cancer CAN BE CURED. He explained that there are many different degrees of stage IV colorectal cancer and that I had a lot going for me at this time; and that he hoped we will cure this disease with treatment and close surveillance. I’ll go over more of the data he shared with us in the next post.
The bottom line is the U of M oncologist won our confidence and trust.
So the results were all in. The pathology report from the colon resection, and the results of the CT scan of the chest, abdomen, and pelvis.
The key finding in the pathology report was that one of seventeen lymph nodes tested positive for cancer. That meant the cancer had spread into the lymph nodes and, therefore, I would likely need chemo as part of my treatment.
The other results showed that the lung nodule had grown from approximately 12 mm to 18 mm in 200 days. This came along with the recommendation that the nodule be biopsied as soon as possible. It was likely that the nodule was cancer but we were still not sure if it was a metastasis of the testicular cancer or colon cancer or possibly a third primary cancer (e.g. lung cancer).
Before agreeing to a biopsy, given the previous discussion about the challenge with the location of the nodule, we requested a consultation with a thoracic surgeon. The oncologist referred us to the surgeon that we were previously considering for doing the biopsy, before the PET scan reported that the nodule was not likely cancer. He suggested that this surgeon could put in a port (for chemo) and address the lung nodule.
When we met with the surgeon she decided that the nodule was likely cancer and we all decided that it would be best to simply remove the nodule and save time. So the lung resection surgery was scheduled for 6/1 (three weeks after the colon resection was completed).
6/1 came quickly and the surgery was performed successfully.
The nodule was removed and the pre-pathology report found it to be a metastasis of the colon cancer. The good news was that the section of lung removed showed clear margins (e.g. the cancer was removed entirely).
So, now with the metastasis to the lung and a lymph node the diagnosis is Stage IV Colon Cancer.
In the following days the final pathology report confirmed the preliminary report.
The recovery from the lung surgery took a couple of weeks (a bit faster recovery than from the colon surgery).
And with the recovery moving along quickly we started to discuss next steps with the local oncologist. We also started looking into getting a second (and possibly third) opinion.
I was supposed to go for the lung nodule follow-up on May 16; however, this had to be rescheduled due to the resection surgery. So Monday, May 21st was the new day for the follow-up scan.
Going to get the CT scan was the focus of the day. The chest, abdomen, and pelvis scan required that I not eat or drink and I had to drink the ready CAT prep liquid (not good). The scan was at 1:50 p.m. That meant I spent most of the day hungry and thinking about the scan, researching chemo, wondering if the nodule on my lung will be bigger or gone, and wondering if they will find lesions on my liver or if there are any other hidden tumors lurking inside me.
And when the CT scan was done, I felt sad and helpless. My blood has been drawn, the tests have been completed, and now again, I have to wait for the results. And the results are out of my control.
Around 5:30 p.m. dinner time rolled around. My step daughters cooked my favorite dinner (spaghetti) however, I had eaten shortly after the scan was completed (remember I didn’t eat all day), and I was not hungry. Instead of eating spaghetti dinner I wandered out back and built a fire in our fire pit. It was cloudy and cool and the fire was warm and relaxing. I was sitting by the fire wrapped up in my thoughts and reflections. The kids came out after finishing their dinner and sat with me a bit. We chatted about their current challenges and then they all decided to take a bike ride and left me to my own reflections.
Monday night golf was surprisingly not something that crossed my mind that day. This was surprising because it was Monday and not being able to play on my Monday night league because of this cancer was one of the things that really saddened me.
I have played golf with the same partner for the last 15 years and with the same Monday night league for the last ten years. We are not the best golfers. We have won our league a few times over the 15 years, but usually we end up 3rd, 4th, or 5th. We play to play and to have fun. Our entire league (all 20 people) is of similar mindset and mostly play for fun. With the resection surgery I had to find a sub for at least six weeks. Now facing chemo I realize that I may not be able to play this season at all. And I miss playing already. This makes me angry and sad.
My phone rang around 8 p.m. and my friend Travis was on the phone and wanted to know what I was doing and if he could come over. I told him I had built a fire, that I had a few beers in the fridge, and he was more than welcome to join me. Travis and Terry arrived, then Louie and Maynard.
My golf buddies from the Monday night league decided to come over for the 19th hole. I was surprised that I didn’t even remember that it was Monday night. How could I forget?
We all sat around the fire, we laughed and talked. My wife brought out hot dogs, chips, and peanuts. They grilled dogs and enjoyed a little post-golf snack. We reminisced about golf, hunting trips, and fishing. We talked about cancer, the tests, and the possibility of chemo. And we discussed ideas for the next Monday night post-golf gathering (they want chili).
This impromptu gathering caught me off guard. I was touched. It truly made my day. I am lucky to have friends who I have known for so many years and have experienced so many things together with them!
I still had to wait for the results from the CT scan and blood lab tests. But waiting was not so bad on that Monday night as it was spent with friends who cared to come and cheer me up; without even knowing how much it was needed.
5/11 came and the colon resection surgery was successful. A small portion of the colon was removed with clear margins and the remaining colon was reattached successfully. The epidural the anesthesiologist ordered was also successful. I felt very little pain in my abdomen and since it was a local anesthesia my head was clear. My abdomen and legs were numbed by this anesthesia but that was worth it given the pain that was being managed.
I was released from the hospital on Tuesday at 5 p.m. Most of my time in the hospital was fairly pain-free (thanks to the epidural); however, I did endure pain as they took out tubes and my body had to transition off the epidural and start to function again. The good news is that I was able to walk and work through the pain and make it home a day earlier than the predicted hospital stay.
Okay, the cancer was removed and now more waiting. I had to wait for the pathology report to see how far the cancer had grown.
Recovery time at home was spent walking and sleeping and seemed to pass very quickly.
So the symptoms didn’t go away. Bloating, cramps, constipation, and occasional blood in the stool. These symptoms were still present. I went to my family doctor once again on 3/26/12. He didn’t waste time in ordering a colonoscopy. He felt that the fact that changes in my body (the testicular cancer) have happened was enough to justify checking on these symptoms further.
The colonoscopy was done 4/21/12. Upon awaking from the colonoscopy the doctor told us he found the cause of my issues.
“There is a tumor blocking about 50% of the colon. And I’m 99% sure it is cancer.”
“Could it be a metastasis of the testicular cancer?”
“It is possible, but not likely. Most likely this is colon cancer. We’ll know for sure when we get the biopsy results back.”
Again, my heart sank into the pit of my stomach. I knew this feeling. It was like deja vu; Halloween in April this time.
He referred me to a colon surgeon and recommended I get this tumor removed as soon as possible. My appointment with the colon surgeon was scheduled for 4/25.
This was a much more serious surgery than the orchiectomy. Basically, it consisted of cutting out a section of colon and reconnecting the two remaining pieces. I wondered if I should look for a good surgeon. Should I trust the “small town” surgeon to do this? How do you know if the surgeon is good? What are their credentials? How many times have they done this surgery?
So many questions, so little time to research, and hardly any resources to help with selecting a surgeon. That is another challenge with dealing with cancer. You fall into the medical system and you really don’t know who these doctors are and whether they are good. Or if the hospitals are good or which are the best. You are forced to pick surgeons and hospitals and sometimes these choices are done blindly and with little data.
Anyway, from what I could gather up on the web, the surgeon in Battle Creek was rated highly. My family doctor spoke highly of him. The nurses at the hospital spoke highly of him. The doctor that did the colonoscopy said that he would be his surgeon of choice if he required this surgery.
So 4/25 came and I met with the surgeon. He seemed confident. He answered all our questions. He went over the biopsy results that confirmed it was colon cancer. He scheduled the surgery for Friday, May 11.
This surgery would require a leave of absence from work and would require a few weeks of recovery.
This cancer would not be dealt with like the testicular cancer. So much for not skipping a beat.
Waiting is one of the hardest parts of a Cancer battle. Once you have cancer you are always a cancer patient. You need to try and tune into anything your body is telling you, as that could save your life. I had told my wife shortly after knowing about the testicular cancer that I didn’t think this would turn out good. I told her that I had cramps, constipation, and bloating issues; and worried that this cancer was in more than one place. Another promise – she made me promise to to tell the doctors all these symptoms.
And so my follow-up visit came on 2/1 and I reported all the concerns to the doctors; shortness of breath, fatigue, constipation, bloating, cramps, and blood in the stool… They told me that the shortness of breath and fatigue is normal after receiving radiation therapy. They also said that some constipation will come from pain medicine and that blood in the stool was probably nothing to worry about — probably just hemorrhoids. Take some stool softener, drink prune juice, and eat fiber … You’ll be alright. Hmmm… I had CT scans on multiple occasions, of course there must be nothing to worry about! Surely they would know if there were any other issues.
So off to get the follow-up Chest X-ray to make sure everything looked fine, drink prune juice, etc.
The day after the X-ray, the doctor’s nurse Elsa called me while I was at work. “There is an “abnormality” on your right lung. The doctor would like you to go in for another CT scan.” The CT scan was scheduled for Friday, 2/3/12. So, I’ll get results on a Monday… Waiting…
The abnormality is confirmed by the CT scan. What do you mean “abnormality” on my right lung? How could there be an abnormality that quickly? I just had a CT scan and Chest X-ray done a couple months prior???
I need to pay more attention to things. I asked the doctor if he compared the current X-ray to previous scans. He had not. So he obtained the original chest X-ray from a different hospital and finally did a comparison. His report — “the original X-ray actually did show the lung nodule but it was obscured by a rib.” That means the other radiologist didn’t see it when it was originally taken.
His report was that my lungs were all clear. These doctors make mistakes. Yep, they are human too. They don’t catch everything. So there was a nodule then and the nodule showed to be a little bigger now. But the size difference was within a measurement error, so they were not sure it was growing.
Given the location of the lung nodule, a biopsy will be difficult. So the radiologist’s recommendation was to get a PET scan. A PET scan will measure the metabolic intake of a tumor. If it is cancer, it will take in sugar and “light up” on the PET scan.
More GOOD NEWS. The nodule did not show uptake – it was NOT CONSISTENT WITH CANCER. Therefore, all we need to do is wait and see…
The last thing the good doctor told me in Battle Creek was “Don’t be overly optimistic. This still could be cancer
The next scan was scheduled for 5/16/12.
The orchiectomy surgery went well. Heck, it was more than well. The pathology report was complete. I had the least aggressive type of testicular cancer someone can get. It was classified as a pure seminoma, stage 1. And that’s only an “R” and “L” away from semi-normal. That meant I really didn’t need to do anything else at all; except watch and see if it ever comes back. Just to be safe and, going along with recommendations of the good doctors, I went ahead and had radiation therapy to kill off any cancer cells that may be in the lymph nodes connected to the right testicle. Twenty two treatments, a little nausea, a little fatigue and I’m done! Odds are with me (85%) that this cancer is behind me and I can get on with life. Whew, this was a close call. But luckily I’ve come out of this (hopefully) with minimal impact.
Can Cancer be beat this easily? Wow, this was pretty amazing. I didn’t even miss an entire day of work. Even my surgery was done on an outpatient basis and I was home in time to work in the afternoon (until the mediation wore off). Who thought you could have cancer and never skip a beat?
Now only thing we need to do is watch (close surveillance as the doctors put it).
Next tests and scan is scheduled for 2/1/2012.