After I was diagnosed with colon cancer in September 2015, I immediately decided to open up completely to the people around me. Also to avoid having to explain everything over and over again (and therefore having to have the same conversations over and over), while I also needed distraction, I had created a kind of blog. I have listed the content of the blog posts chronologically below.

Colon cancer diagnosis (September 21, 2015)

Even before the summer holidays I suffered from shortness of breath, it seemed to be a stress phenomenon. But even after the summer holidays, this shortness of breath was back. Others also thought I looked pale. In consultation with the general practitioner, it was decided to have a blood test and this indeed showed a significant anemia: an Hb level of 4.1 instead of 8.5. According to the doctor, it was a miracle that I was still so fit on my legs.

Hemoglobin is an iron-containing protein, red in color, that is contained in blood cells and gives it red color. This substance can bind oxygen and ensures the transport of oxygen to the cells. These cells need oxygen to function properly, such as the burning of nutrients, which releases building blocks and energy. A deficiency therefore results in a reduced supply of oxygen, which ultimately results in too little energy being released. As a result, people feel tired, look very pale and often have constantly cold hands and feet. Iron is needed to make hemoglobin. A lack of iron (iron deficiency) is usually the cause of this type of anemia.

According to the doctor, anemia is in many cases caused by problems in the stomach and intestines, so I was allowed to show up last Tuesday for a stomach and intestinal examination. Because I really had no problems at all, I assumed something as innocent as a weak vein or a polyp that occasionally bleeds. The shock was great when the examining doctor informed us that he had observed a large tumor in the large intestine. Also some vague spots in the rectum.
Left: The large intestine in an adult is about 1 to 1.5 meters long. In my case the tumor is in the ascending part. The stool has only slightly thickened at that point, so that the tumor can remain undetected for a long time.
Right: This will be approximately the image the gastrointestinal doctor will see during the colonoscopy. I think this is quite a big one. It sometimes happens that a tumor the size of a tennis ball is removed in people.

The next morning appointments were made for follow-up examinations. These took place last Monday: an MRI scan, a lung X-ray, a CT scan and another blood test. The aim of these studies was to determine whether the tumor has already worked its way through the intestinal wall and thereby caused metastases. These metastases usually first appear in the lymph nodes, then in the liver and lungs.

In stage 1 and 2, the tumor has remained entirely within the intestinal wall and is therefore still isolated to a certain extent. At stage 3, there is already contact with the lymphatic system, allowing the spread of cells. In stage 4 metastases are possible to other organs. Usually these are the lungs and liver.

Unfortunately, the results of the scans have not yet been able to provide much clarity, according to the conversation with the doctor last Wednesday. It seems that the tumor has passed through the intestinal wall. In itself, the tumor is in a relatively favorable location, so that, according to the surgeon, there is still some "margin" due to the presence of a lot of fatty tissue. However, a spot has been found on the liver, of which it is not yet possible to say whether it is malignant. The same is true of a thickened lymph node found deeper in the body. It is unlikely that this is a metastasis of the tumor in the colon, it could be something on its own, but it is also unclear whether it is malignant. Finally, the thickenings in the rectum: it is not a "classic" rectal tumor, but it is a thickening that is under the mucous membrane. Is this also something malicious or just a fat bump or something like that? No clarity here either.

I have to undergo a PET scan on Monday to get clarity. This method is much more sensitive than the CT scan and can make metastases much more visible. Monday evening I will be discussed in the expert meeting and on Tuesday I will be told how the flag is hanging and what the treatment schedule will be. It seems obvious to first remove the tumor with surgery, but sometimes it is also possible to first use chemotherapy or radiation. Everything depends on the results of the PET scan.

In a PET scan, glucose is introduced into the bloodstream, which is attached to a radioactive Fluorine atom (F-18). Tumor cells consume glucose much more and faster, so that there is an accumulation of the radiant fluorine, which can therefore be recorded. The investigation must be done quickly because the F-18 has to come from Amsterdam and has a half-life of 110 minutes (in other words, after 110 minutes only half is left). By combining the PET scan with a CT scan, the malignant tissue can be easily localized.

Preliminary diagnosis (September 22, 2015)

With a heavy heart we went to the hospital in Almelo on Tuesday morning. Naturally, as the "day of reckoning" approached, tensions mounted. This morning it was almost unbearable: what were they going to tell us? In order to get this appointment as early as possible, it was necessary to make an appointment with a different surgeon than the first time (that was Dr. Claassen) and so we now had to deal with Dr. van Det. Due to unforeseen circumstances it took about 10 minutes extra before we could enter. Upon entering, the greeting was relatively light-hearted, not exactly printed. That was different from the first time....

And yes... the surgeon had (relatively) good news! All three problem areas identified last time showed no results on the PET scan. A heavy burden was lifted off of us! Although you have to put all the moments of success in this condition into perspective, it seems for the time being that the tumor has not worked itself or has only worked through the intestinal wall to a limited extent. Given the picture from the previous post, so stage 2 or 3. That makes the future prospects much better. We were then shown a number of images from the CT scan. Remarkable is the size of the tumor, while there were no complaints....

The tumor therefore has considerable dimensions: an estimated 5x8 cm. However, it seems that the outgrowth has taken place more in length than in width. The peritoneum and one of the kidneys are on either side of the intestine, but the CT showed a clear separation of the organs.

There is still an unclear spot near the rectum. According to the PET scan, not cancerous at this time. However, further research will still take place to determine whether this could possibly cause a problem in the future.

So what's going to happen now is an operative procedure called hemicolectomy: the surgeon will remove the tumor and the adjacent intestinal segment, as well as the lymph nodes into which the tumor can spread first. In my case, the right part (left in the drawing) of the large intestine will be removed, about 30 cm, after which the remaining part of the large intestine will be reconnected to the small intestine.

That means that I will miss about 20-25% of my large intestine. Eventually, however, the colon will return to its normal function. As can be seen in the drawing above, the associated system of lymph nodes will also be removed. The removed intestinal part, including the lymphatic system, is then sent to the pathologist. The PET scan has not yet detected anything in the lymph nodes, but there may already be small principles of metastases (metastases). If so, additional chemotherapy will be needed after surgery to make sure everything has been removed.

Initially, the surgeon assumes a laparoscopic procedure, i.e. keyhole surgery. With keyhole surgery, the abdominal contents can not only be inspected, but the actual operation can also be performed. Due to this method of operation, the surgical injury is considerably smaller. There are no large wounds, so that there is less pain after the operation. The patient can quickly get out of bed and walk around, which stimulates bodily functions. Most patients can eat normally again after 2 to 3 days and in many cases discharge from the hospital can be achieved within a week after major bowel surgery.

After some air has been injected into the abdominal cavity with the aid of a thin needle, the operation is performed through a number of small incisions of 0.5 to 1.2 cm. A number of small tubes (trocars) are inserted through this. The number of trocars can vary from 3 to 6, depending on the nature of the operation. With the help of special instruments, surgery can be performed through the inserted tubes. Via a video camera, the internal image is greatly enlarged on a video monitor, on which the surgeon can follow his actions. At the end of the procedure, one of the openings in the groin or navel region is usually extended to about 5-7 cm, in order to remove the operated piece of intestine.

The benefits during surgery are:
  • an excellent overview of all parts of the abdomen
  • a strong magnification of the internal image, so that nerves, blood vessels and other important structures can be optimally spared giving donated blood. The blood loss during laparoscopic bowel surgery is significantly less than with a comparable 'open' procedure
  • Due to the lack of a large wound, there is less loss of body heat and moisture during the operation. Because the patient does not cool down during the procedure, the patient's blood clotting and defenses are better preserved
  • a faster recovery of bowel function because the bowel does not have to be hidden behind gauze and a retractor during surgery, as in the 'open' procedure. In almost all cases, a gastric tube is not necessary after surgery.
Of course, complications can arise or it may turn out that new cases come to light. Then it is still possible to switch to a classic operation, which, however, requires a longer recovery. The surgeon now assumes an operation of a total of half a day, a hospitalization of approximately 5 days and a recovery period of 1-2 months. According to the protocol, the procedure must take place no later than 5 weeks after the discovery, so from today we have 3 weeks left. Next Tuesday are the preparatory examinations and conversations with the anesthetist. We will probably also be told when the surgery will take place.

The surgeon's last comment was that there is probably gene instability (a good explanation can be found here). After the operation, genetic engineering will therefore also conduct research to determine whether there is indeed a hereditary influence.

All in all, a great relief: within the current problems, this was the best we could hear. As said before: setbacks are always possible in this trajectory that will take a long time, but optimism has received a strong boost again today!

The upcoming operation (September 29, 2015)

Yesterday and today I had the intake interviews with a view to the operation. This will take place on Tuesday 6 October in ZGT Almelo. Below is a brief summary of the content of the conversations, insofar as relevant:

Conversation with the surgeon:

After I had become acquainted with Messrs Claassen and van Det in the preliminary diagnosis, I now had an introductory meeting with Dr Lutke Holzik. He is going to carry out the operation because the previous interlocutors had already filled their agendas. Apparently quite a few stomach surgeries are performed. If my diagnosis had been made around January of this year, I would have had to deal with a waiting list. The national population screening apparently yields quite a few patients.
The conversation was pleasant and the surgeon answered some of my questions:

  • What about my Hb level with regard to the surgery? The level is now 5.6 and is expected to be around 6.0 during surgery. The Hb level must be sufficient to allow the wounds of the operation to heal properly and that is possible at the current values. The surgeon did not consider a blood transfusion necessary. In addition, the aim during surgery is to minimize blood loss.
  • What is the final situation in the body if such a large piece of intestine is missing? I will not notice much of it in terms of body and in terms of function the intestine should eventually return to normal results. However, it cannot be ruled out that the body will have to be opened further than with keyhole surgery. The surgeon finds the tumor on the large side and wants to be sure that everything is removed properly.
  • What possible complications are there? There is about an 8% chance that the seam with which the intestinal parts are attached to each other will leak. A new operation is then necessary. In the extreme case, a temporary stoma may be necessary to give the whole thing rest and to be able to heal completely. Elsewhere in this blog an explanation of the exact procedure.
  • How is the removal of the lymph nodes and what happens to them? The lymph nodes are removed by burning the vessels closed. The tumor and associated lymph nodes are examined layer by layer by the pathologist. The result of the examination will be known after 7-10 days. I have to take into account, also given my age, that a decision is made to a so-called adjuvant chemotherapy. In stage 3 (see earlier message) it is actually common and the statistics of the hospital also indicate that this is decided in 80% of the cases. This chemotherapy is supposed to destroy malignant cells left in the body (which are too small to detect with scans). Statistically, it increases the long-term odds by 10-25%.
  • How long has the tumor been in the body? Quite a shocking answer: between the very first stage as a polyp and the current stage is between 5 and 15 years! It sometimes takes ten years for a polyp to become really malignant, and intestinal tumors also usually grow relatively slowly. So maybe I have had a reasonable degree of anemia for a number of years.....

As you can see here, at 47, I am still relatively young for this condition. It is also clear to see that a population screening is justified from 60 onwards, especially if you take into account that the number of cases of intestinal tumors is increasing (6000 in 2000 vs. 9000 in 2014), so an increase of 50% in less than 15 years!

Conversation with the nurse:

Two other possible complications of the surgery are:

  • Pneumonia: due to the pain in the abdomen caused by the operation, a patient can only breathe "high", so that pneumonia is lurking.
  • An ileus/gasstoparesis: the temporary inability of the bowel or stomach causing abdominal distention and vomiting.

To reduce the risk of these complications, the "faster recovery program for intestinal surgery" was chosen. In addition, the bladder catheter and epidural catheter (spinal tap) are only removed on the second or third day after the operation in order to minimize pain in the abdomen and to be able to sustain breathing as "deep" as possible. We also try to get the bowel function back on track as soon as possible. This means that the first day drinking and especially consuming (light) meals are on the program. On the day of the operation only custard or rusk, but on the second day after the operation another "normal" meal. To ensure that sufficient energy enters the body, additional drinking food is used. In order to get the gastrointestinal tract going (and to prevent pneumonia and thrombosis), an attempt is made to sit down as soon as possible and to stand or walk a little later. It may already be possible to be discharged on the fourth day after the operation, provided there has been a bowel movement, food and drink are normal and the painkillers continue to do their job sufficiently. Of course, the discharge can take 1 or 2 days longer, but usually hospitalization is 5 to 7 days.

Hoe gaat de operatie in zijn werk (in het geval van een klassieke operatie)?

The operation and hospital stay (October 18, 2015)

Tuesday, October 6, was the day of the operation. On Friday I was already called that it would happen at 08.00 and that I had to report at 06.45 in "5-Noord" of the ZGT in Almelo.

After having received such a nice surgical vest and a barcode to prevent mix-ups, I was moved bed and all to the porch of the ORs. The IV was already prepared there, which I would be stuck with for the foreseeable future.

If you think you are the only one to be operated on..... no fewer than 9 beds with "victims" were ready for the operation. At exactly 08.00 we drove into the OR and there we shook hands with the surgeon, the anesthetist and the assistants. The epidural was prepared with a mean syringe beforehand and not long after that mister was in dreamland. Around noon I was driven from the recovery room to the room on the fifth floor. In any case, I had undergone the surgery.

The surgeon had already stated in advance that keyhole surgery could entail the risk that the tumor with associated glands could not be removed properly due to its size. A larger cut in the skin was therefore probably necessary.

And after the operation that turned out to be indeed the case. Below you can now see approximately how the wounds are now. By the way, I also suffered from an umbilical hernia in the past, which has been repaired at the same time.

The wounds were of course neatly bandaged and the epidural was deliberately left in place to give me continuous pain relief. All in all, the pain was not bearable, so that an extra pump with pain medication was placed on the IV later on. Incidentally, there is a special "Pain-Team" that deals with this and who come every day to have a look.


The faster recovery program seemed to work fine on the first day. The food on offer tasted good and I was able to process it well. But on day two, the complications came into play:

On day 2 I suddenly couldn't take the food anymore. The gastroparesis later turned out to be a fact: the stomach had ceased its activities. The food was no longer channeled into the intestines and accumulated in the stomach.

This had to be solved with a gastric tube: a tube through the nose to the stomach, connected to a collection bag, so that excess food and the gastric juices still produced could flow there. The stomach also had to be pumped out a number of times through this tube.

The other complication was the rising body temperature: a fever that could reach 40°C and the cause of which was still unknown.


In the photo above you see me in this wrong state: fever, with a gastric tube and a huge bloated stomach due to accumulated fluid. The latter puts pressure on everything in the abdomen and certainly does not have a beneficial effect.

You can also see how I am connected to the IV pole: an IV tube from the hand, the thin orange wire from the back and the extra pain relief also via the IV. Furthermore, a tube from the gastric tube to the overflow bag and not visible the bladder catheter for the collection of urine...

To determine the cause of the fever, a lung photo was taken twice (pneumonia?) and a CT scan twice. This all came to nothing. To make you nervous.... At the second CT scan, however, our greatest fear could be removed: the seam of the small and large intestines was good!!

The surgeon on duty therefore suggested that it must be in the wound and had all the sutures removed so that the wound could be rinsed better. Later analysis of the exudate indeed showed that there was an infection here.

It was now Monday and so I was without food for almost a week. It was decided to have a trilumen gastric tube. A combination of three tubes, one of which ended in the stomach (as a gastric tube) and two in the small intestine, in order to give me the astronaut food directly into the intestines. The accompanying intention was also to stimulate the intestines extra in this way. However, inserting this thicker sin was almost traumatic... :-(

Fortunately it went uphill again after that: the fever started to drop slowly due to the extra antibiotics added. The pain relief was also slowly reduced, including the bladder catheter, so already a number of wires and tubes less.

From Wednesday, however, it also appeared that it was no longer necessary to pump out the liquid food from the stomach: the stomach now seemed to be passing the food on again! In the days that followed, the appetite increased, the fever further decreased and on Friday there was already a slight indication that I could leave the hospital on Monday. The bloated stomach also started to decrease more slowly.

On Saturday everything looked so good that the gastric tube and the IV could be removed (I was a free man again!!) and if I wanted to, I could already be discharged on Sunday. So you don't have to say that twice.

Sunday 11 am it was time. After 12 days I left the hospital. If you look closely at the photo, you can see that I have become a bit thinner.... ;-)

Follow-up meeting with the surgeon (10 November 2015)

Had the follow-up conversation with the surgeon (Lutke Holzik) this morning. Key points from that conversation were:

  • The wound looked good. He was convinced it would leave a very civilized scar. In fact, I could do everything in terms of movements again.
  • I was informed informally during the hospital stay: the tumor is classified as T3 N0 M0 and no chemotherapy is required.

T indicates the growth stage; T3 means that the tumor has penetrated through the muscle layer of the intestine, also reached the outer layers of the intestine, but has not grown through.

N indicates the number of lymph node metastases; and N0 therefore indicates that no lymph nodes are affected (45 have been examined!)

M indicates that there are metastases elsewhere in the body, eg liver or lungs; M0 means that there are no metastases here either.

With T3 N0 M0 this tumor belongs to "Stage II" (see below)

Conclusion: we can say that we got there just in time......

  • I get a referral to the geneticist who must determine whether there is a hereditary component. I had thought that that information could also be extracted from the tumor, but that is not the case. A tumor cell is genetically altered and does not always contain the original information in the DNA. A blood test will take place before this conversation (the umpteenth)
  • The thickening in the rectum has yet to be investigated. Although a first biopsy did not yield any results at the time of the first intestinal examination, and the PET scan was also negative, this thickening does not belong there and people would like to know what it is and whether it could be harmful at a later stage. To this end I will have an endo-ultrasound done by the gastroenterologist and the surgeon also wants to take another look.

An ultrasound is an imaging test that uses sound waves. Different types of tissues all reflect these waves differently. An image is formed on a screen of the reflected sound waves.

Endo-anal ultrasound is an examination that can be used to examine the anus and rectum. The doctor inserts a rigid tube or flexible tube (endoscope) into the rectum a short distance. With the flexible echo-endoscope it is also possible to look further into the intestine. This is called an endoscopy.

To get an impression of what an ultrasound can show:

Left: image of an endo anal ultrasound of the inner(is) and outer(es) anal sphincters that is healthy

Right: image of an endo anal ultrasound of the inner(is) and outer(es) anal sphincters that is abnormal

  • When I was discharged from the hospital, I was found to have a high concentration of platelets. This could mean a greater risk of thrombosis, so I was temporarily prescribed a blood thinner. A blood test immediately following this visit should indicate whether this blood thinner is still needed.
  • I don't really have to take the steel pills anymore. Because of my diet and because there is no longer any iron loss, the surgeon expects that my Hb level will automatically reach the desired level.

Conclusion after this conversation:

With regard to the colon tumor, we can indeed say that we were there just in time. There are no metastases and chemotherapy is not necessary. The future prospects are very optimistic in this regard (but obviously there are no guarantees in this game...). But can the flag go out? No, definitely not. As long as I don't know what that bulge in the rectum is, I'm not sure yet. Maybe it's harmless, but with the announcement from the gastrointestinal doctor that I had an intestinal tumor in the back of my mind, I still get nervous about such an examination. And the rectum is a sore point. Surgeries for this are often accompanied by (temporary) stomas and that is also frightening.

In the afternoon I got a call because of the blood test. It looked fine, the assistant reported. I was allowed to stop taking the blood thinner. But I also knew that this study tested for the CEA value, the tumor marker. So that made me a little nervous. And I will often experience that feeling in the future. I will remain under control for at least 5 years and will have to experience these kinds of results often.

Endoscopy Result (17 December 2015)

Last week I had the endo-sonography and a biopsy was taken of the tissue of the thickening in my rectum. And what I already feared came true this morning: there is evil here too. So the disappointment is great. I had hoped to be able to slowly complete the process and continue with my normal life, but I will remain "in the mill" for the time being... No reason to panic, the surgeon tried to reassure us. In terms of "danger", the threat is much less than in the previous case (the intestinal tumor). But the uncertainty is of course there again...

What exactly has been discovered? At 16 cm from the end, on the border of the large intestine and rectum, a so-called carcinoid has been discovered, also called Neuro-Endocrine Tumor (NET). These tumors are rare (!) and arise in cells controlled by the nervous system. These cells can also produce hormones and in some cases such a tumor can produce excessive hormones, causing physical complaints (carcinoid syndrome). To give an idea of ​​what the thickening may have looked like, see the image below (note the difference with the colon tumor earlier in this blog).

This NET has been examined by the laboratory and classified as "grade 1", ie as a slow grower. This is established on the basis of two observations. First, one counts the number of mitoses (cell divisions) in a certain period of time. Secondly, one looks at the structure of the cells. See the two pictures below:

On the left, all cell nuclei are the same size, which indicates regular cell division (well differentiated, see below), on the right, the cell nuclei are different in size, which indicates rapid, irregular growth. See also the schedule below. Functional means that the tumor secretes hormones, but further research will need to be done on this (blood test). With a relatively fast grower, this is referred to as a NEC, where the C stands for carcinoma.

With grade 1, the surgeon also wanted to reassure us. NET is not very common, but often they are slow growers and even in the case of metastases (metastases) treatment is often possible. Incidentally, it is not really possible to make a statement about the stage (see intestinal tumor), but given the size (the surgeon spoke of a 2-euro coin), T2, but perhaps also T3 is expected. All this again says nothing about damage to lymph nodes, etc., so that is again exciting (an article speaks of a 50% chance of spreading at this size). Why didn't the PET scan see this? Because it is a slow grower, a fast metabolism is not present and the method will not detect quickly. In addition, these cells have a different metabolism and a PET scan with a different isotope is probably better. Incidentally, due to the slow growth rate, NET is usually discovered by chance (as in my case) or at a very late stage (when the hormones cause complaints).

Because NET is rare, the surgeon will refer me to the university hospital in Groningen. So I will soon receive an invitation for that and then we will go into the mill again..... I do not like that, but again there is no choice and I still hold on to the somewhat reassuring words of the surgeon. I hope he is right....

Genetic testing:

Last week I also had a conversation with someone from Radboud Nijmegen about a possible heredity of the colon cancer. As for the pedigree, there was no indication for her given that colon cancer and cervical cancer have not surfaced before. These two types are known to be related (as with breast cancer and ovarian cancer). However, gene instability has been observed in the tumor cells. This can be incidental, but also the result of hereditary Lynch syndrome (about 3% of colon cancer cases). To this end, the tumor (which is still preserved) will be re-examined for, among other things, the presence of certain proteins produced by the abnormal gene. Blood was also taken again to determine the presence of these proteins. The whole process will take about two months, so I'll hear about that in February. So to be continued...

Result PET scan UMCG (8 January 2016)

On December 30, another series of scans were made in the UMCG in Groningen with regard to the Neuro-Endocrine Tumor (NET) found. While the previous PET scan (made in Hengelo) showed nothing of this, now a different isotope was used that should have visualized the NET. The MRI and CT scan was also made again because the previous ones were now 4 months old.

Today (January 8) the following disappointments presented themselves during the meeting. dr. Hemmer wanted to "get straight to the point" and that didn't bode well. Indeed! We had received the message from Almelo that the intestinal tumor had completely disappeared, here we received the message that 4 spots have been found on the liver that have a very high probability of malignancy. Because they did react in a certain way with the used contrast medium from the CT scan and not with the isotope from the PET scan, it can hardly be other than that they come from the removed intestinal tumor. To put it more clearly: metastases or, in a nice word, metastases. Further examination of the lymph nodes of the removed tumor had also shown the presence of so-called micrometastases, so the lymph nodes were not 100% clean either....

According to the doctor, that means first work on this shop because of the greater risk. "Lucky" in this accident is that the metastases are not yet very large. In terms of size, 3 are very small (a few mm) and one somewhat larger (8-9 mm). So these must be removed. This can be done via radiofrequency ablation (RFA, actually burning away) and resection (nice word for cutting away). RFA is a much lighter procedure, resection actually comes down to a real operation and is therefore a lot heavier. A new MRI must now provide sufficient information for the doctor's team, whereby the input of the liver doctor is decisive in this case.

What does the MRI do in this case? In fact, the MRI indicates water molecules. These respond to the magnetic field of the scanner. Where there is a lot of water it is light, where there is little water it is dark. Tumor cells and therefore also the metastases have a fairly compact structure of cells with relatively little room for water molecules. See the MRI scan below where a liver (not mine) is depicted: the dark spots indicate the metastases.

In short: the colon carcinoma has metastasized after all and that gives significantly different prognosis for the future. The doctor did not want to comment on this at first, because everything is of course dependent on this procedure. Why did Almelo/Hengelo not see this? Perhaps the metastases were too small for clear PET scan imaging. And through the internet I understood that there are different pathological methods to view a tumor and some of these methods have their limitations. We can therefore assume that Groningen has more knowledge and experience in-house.....

And then the NET... it comes second again, because of the lower risk. However, it was clear to see that it has a reasonable size and that a lymph node is also affected nearby. Because the NET is already fairly large and due to the metastasis, it must be removed as being a normal tumor. And since he is in the rectum, that means that a piece has to be removed .... which I was also afraid of .... that will soon mean a temporary stoma in the hope that the remaining part of the rectum and the large intestine to grow back together again. That means that I will have to continue with a smaller rectum and that I will have to visit the toilet several times one day.... the second big disappointment.

So to summarize: I will soon have to go to the hospital three times for an operation

1. Before Liver Surgery

2. before rectal surgery

3. for the removal of the stoma

Well... and how I, or rather how we feel..? Pretty disappointed and dejected. This needs to be processed. A few weeks ago I had the feeling that I would soon be able to function normally again. Now that moment has certainly been postponed for another six months..... and in addition metastases mean greater uncertainty for the future. On the other hand, if I hadn't had the NET, I would have happily started my life now and then in a year's time would have been confronted with a severely damaged liver. And then it would certainly have been bad, now there are still opportunities..... and we have to go for it, no choice at all!

Result MRI scan UMCG (30 January 2016)

As described last time, an MRI scan was supposed to provide a definitive answer about the spots on the liver. In the conversation with the surgeon, it was explained again that the spots on the CT scan indicated that there was abnormal tissue compared to the liver tissue. Fortunately, however, the surgeon was able to report that those spots were not visible on the MRI, in other words, there is no metastasis of the tumor! A so-called EDTA test with urine was also done to detect any malignant tissue. We haven't talked about it anymore, but I assume that test was negative too. There, 100 kilos fell off our backs....... What are those spots then? Apparently they are liver hemangiomas: benign growths of blood vessels. They occur in 1-2% of people and are basically completely harmless.

What about the micrometasases found in the lymph nodes? Almelo/Hengelo found nothing and Groningen did. The surgeon indicated that pathological is less black and white than people often think. In some cases there is indeed a gray area and I probably fall into it. Fortunately, a fairly large group of lymph nodes has been removed. Incidentally, a course of chemotherapy is no longer useful, that should have been done at most 6 weeks after the operation. Statistics show that chemotherapy at a later stage no longer makes sense. So there is still a bit of uncertainty here, but I will be closely monitored with at least an annual CT scan and more regularly a blood test to determine the CEA value (tumor marker).

Then the NET tumor. It must be removed. However, there is uncertainty about its location. Groningen is talking about 7.5 cm from the end, Almelo is talking about 15 cm. In Groningen it is concluded that from the scans taken, in Hengelo this was done with an endo-ultrasound. To be sure now, the endo-ultrascopy will be done again and the tumor will also be "inked", so marked. The difference between 7.5 cm and 15 cm is essential for the amount of rectum I will be left with afterwards. In the latter case, the temporary stoma may not even be needed. This provides an exciting moment again....... Incidentally, the NET tumor and the associated lymph nodes (one of which is clearly affected) will be removed during the procedure, but chemotherapy afterwards due to the low tumor division rate ineffective. Depending on the stage of the tumor (which will be determined after the operation), I receive a monthly injection of a substance that 'freezes' any metastases, as it were. These injections have significantly fewer side effects than chemotherapy.

Heredity is also discussed. Apparently all hospitals are still well connected because the surgeon also had the findings of Radboud Nijmegen. They had already called me last week with the announcement that abnormalities have been found in the pairing genes MSH2/MSH6. Genes produce proteins and by analyzing the proteins they can say something about the presence of genes. Abnormalities as found may indicate Lynch syndrome, a hereditary form of colon cancer (and uterine cancer in women).

The DNA contains several pieces of information called genes. Each gene contains information about a certain hereditary characteristic: there are genes that determine, for example, which blood group or eye color someone has, and there are also genes that inform the body cells when they have to perform certain tasks. For example, genes that prompt cells to divide or genes that signal cells to stop dividing.

Each body cell contains 2 copies of this hereditary information: 1 from the father and 1 from the mother. There are 5 genes that are known to cause Lynch syndrome. Such a change is called a mutation.

People with Lynch syndrome have an error in 1 of those 5 genes. The function of those genes is to repair errors in the DNA. Because everyone has duplicates of every gene, mistakes or damage to the DNA are usually repaired by the healthy, normal gene. This gene is inherited from the non-hereditary parent.

Patients with Lynch syndrome therefore have a right and a wrong copy of a DNA repair gene. If, over the years, inaccuracies also arise in that healthy gene, the gene can eventually no longer repair the damage to the DNA. Errors can then pile up. Ultimately, this cell can derail and cancer can develop.

The 5 genes that are known to have a mutation in them can cause Lynch syndrome:

  • MLH1
  • MSH2
  • MSH6
  • PMS2

The first 4 are repair genes: genes that repair DNA errors during normal cell division. Mutations in the genes MLH1, MSH2, or MSH6 are most common. With a certain change in the EPCAM gene, the functioning of the repair gene MSH2 is disrupted.

The illustration shows that the Lynch genes MSH2, MSH6, MLH1, and PMS2 work together to repair DNA damage. It does not matter which Lynch gene contains a mutation. A mutation in each of these genes causes the same disease.

In patients with Lynch syndrome, the cancer that they can get is often slightly milder than in people without Lynch syndrome. This may be because the DNA damage is no longer being repaired. This can lead to errors that can give the cancer a less aggressive course.

What is the inheritance in Lynch syndrome?
Those who have Lynch syndrome can pass it on to their children. The risk of inheriting Lynch syndrome is just as great for sons as it is for daughters. Both women and men can pass the mutation on to their children. Each child has a 50% chance of inheriting the mutated gene. And with it Lynch syndrome. The chance of not inheriting the mutated gene is therefore also 50%.

We have already established that my intestinal tumor has grown relatively slowly, so that is in line with the above text. Furthermore, the tumors often occur in the Lynch in the first part of the large intestine (so that's also true). People with Lynch syndrome have about a 60-70% chance of developing colon cancer. Is there a good chance that I will get it again? No, because in Lynch's case I will remain under control and may have a colonoscopy every year. If the tumor is still in the polyp stage, it can be easily removed. Radboud Nijmegen is now going to do further blood tests to confirm this picture and to be able to say more about how the syndrome is inherited and whether, for example, my sisters and their children are also at risk. In that case, they will also have to have regular checks.

After the conversation we were able to breathe a sigh of relief. Shortly before the end, the surgeon released a 5-year prognosis in case there had been metastases on the liver: only 30-40%. Exactly what I've been afraid of for the past few weeks. Fortunately, that value is considerably higher. It looks "pretty good," the surgeon said. And with that we were able to go home a lot happier than after the previous conversation!

The upcoming operation (March 3, 2016)

To determine where the NET tumor in the rectum is, I had to undergo another endo-ultrasound on Friday 12 February. Before that I had briefly telephoned the surgeon in Almelo in connection with the blood test for the CEA tumor marker (result good by the way) and it turned out that 7 cm (calculated from the anus) had already been determined during the very first endoscopy. So I had little hope for that 15 cm. During the endoscopy I did not use the sedative, so that I could watch the camera myself. And I quickly realized that the thing was fairly early on. In the end he was at 9 cm, as was determined with the ruler. Incidentally, the tumor did indeed look just like the (random) photo I posted two blog posts back. Furthermore, the size of the tumor was found to be 15 x 18 mm.

That unfortunately means a more difficult story in terms of surgery. Basically this is the intention:

The picture is about a "normal" tumor. A part of the sigmoid part of the colon is even removed here (the horizontal part in front of the rectum). I don't know if that also happens with a NET tumor in my case. The colon must then be connected to the remaining 5-6 cm of the rectum. Because the blood flow there is less and the recovery is therefore slower, and because the rectum must be able to withstand greater pressure, there is a very good chance that the seam will break and start to leak, with all the unpleasant consequences that entails. Therefore, the lower part must be allowed to rest and a temporary stoma must be created. Apparently this usually happens with the end of the small intestine, but because an operation has already taken place there, a stoma is now created for the large intestine, the so-called colostomy. The operation will take place on Monday 7 March at the UMC Groningen and will be performed by dr. Hemmer.

In the descending part of the large intestine (on the pictures above on the right) a piece of intestine is pulled out, as it were, attached to the skin (so that it cannot go back into the body) and cut open. You are then left with two exits. It is therefore called a double barrel colostomy. From one exit comes the processed intestinal mass, from the other comes mucus that the intestine produces to keep the inside smooth. Both "liquids" should now be collected in an ostomy pouch. After 6-8 weeks there will be an initial inspection to see how far the healing has progressed. If this is sufficient, a repair operation will follow a month later to lift the stoma again. The two ends are then sewn back together and placed back into the body.

You would think that we are already done with the story.... but that is not quite the case yet. The rectum has of course become much smaller, which means less reservoir. In addition, the lower part of the intestine has been shut down for three months, and the sphincter, for example, has not had to exert much effort. That means in the beginning frequent and irregular bowel movements. You seem to have to spend most of the first weeks in the vicinity of the toilet.... Over time it seems to stabilize and the large intestine also takes over part of the function of the rectum. Over time, there will be a more stable situation where you still have to go to the toilet 2-4 times a day. According to people with similar experiences, this is a good thing to live with. But... it takes about 6-12 months to reach that state, according to the surgeon.

After removal, the tumor will of course be examined again pathologically. The PET scan showed that a lymph node was affected, but whether there are also metastases elsewhere in the body is still open to question. If there is an indication or suspicion of metastases, I will receive a monthly injection of Somatuline. This is a commercial name for the substance lanreotide, an anti-growth hormone. It is similar to the hormone somatostatin, which occurs naturally in the body. This substance has two effects: it counteracts the action of excessive hormones secreted by NET tumor cells and it inhibits the growth of tumor cells. Sometimes it is possible to "freeze" the metastases, so to speak, so that a stable situation is created.

In short: another intensive half year awaits me. First the operation, then the recovery and handling of the temporary stoma. Then the recovery operation and a period of having to go to the toilet a lot. When asked if I could go back to work in the new school year, the surgeon said he thought I could, provided I have a toilet available at all times. I hope he's right, because I really want nothing more than to be able to function again. But I also have to realize that all kinds of complications are of course possible and that the process takes longer.

Genetic testing:

In the meantime I have also received a (telephone) message from the Radboud UMC and it has been established that there is indeed an abnormality in the MSH2 gene and that there is indeed Lynch syndrome. I thought they could tell you more, but they don't. My sisters have a 50% chance that they are also carriers of the gene, so they must also have a test for this gene in order to be able to work preventively. In order to determine whether I received it through my father or mother, my mother must also be examined for the conscious abnormality (as my father is no longer alive). This is then interesting for the rest of the family.

An otherwise interesting article about hereditary cancer in the family can be found here.

Operation completed... (March 15, 2016)

The operation would simultaneously take place on Monday morning 7 March at 07:30 am, so I had to report to the UMCG on Sunday evening at 8:00 pm. All recording formalities had already been completed on the Friday before. So early in the morning on the hospital bed to the OR. Then it becomes clear to you at the same time that the UMCG is slightly larger than Hengelo/Almelo: an immense corridor with 25 operating rooms in a row! Of course you will be greeted in a friendly manner by the team: the surgeon, the anesthetist and about 4-5 assistants. For the pain relief, a very small tube is first inserted into your back (to be able to inject the painkiller, a morphine-like substance, directly into the desired area and continuously). Then the "known" stabbing epidural and then within 10-15 seconds to dreamland ...... The operation would take about 4 to 4.5 hours.

After the operation is completed, you will be woken up in the operating room. This is possible because the anesthetist will not put you under too much anesthesia. With sensors on your forehead, they measure brain activity and how far you are asleep. Apparently I myself helped to move from the operating table to the bed again. So I didn't spend that long in the recovery room. I came back to the room between 3 and 4 pm.


Left: Getting out of bed is no longer an option. The left arm is connected to the fluid management drip. In the back is a wire that is connected to the yellow tank on the "pole" and through which the painkiller is added. In the first hours there is another tube in your nose that provides fresh oxygen. There is a tube in the abdomen to drain excess wound fluid and then of course the bladder catheter to drain urine.

Right: My swollen belly after surgery. The wound drain on the left. In the middle the covered wound (so again a big cut) and on the right my new addition: the stoma. This now has a maximum performance because there is still a "bridge" in it. This bridge ensures that the intestine cannot shoot back into the abdomen. Sutures should ensure that this bridge can be removed in a short time and that a more subtle ostomy bag can be used. You can also see the beautiful piglet pink from the disinfection. All nice enough to make a happy face ;-)

A very special idea is that you no longer have to go to the toilet because of the stoma and the catheter. The pain was not too bad because of the pain relief and a first small amount of food in the form of yogurt also went well. There was still a bit of fear that the stomach valve would close again like with the first operation (especially fear of that annoying gastric tube), but that turned out to be unfounded. The stomach absorbed all the food just fine. Still, on Tuesday I started to feel more and more uncomfortable. The question was whether the stoma would get off to a good start. Getting out of bed on Wednesday morning to wash turned out to be quite painful. An enormous pressure had developed in the abdomen and that put pressure on the operated area. Shortly after, however, the stoma started to release fluid. In the end almost 3 liters! The pressure and also the pain was completely gone and I felt fine again.

Again it took almost two days for the stoma to release something again, so again a situation with pressure and pain, but less intense than the first time. In the meantime, the fluid balance was up to standard, so the catheter and IV were allowed to go. And the pain relief could also be replaced by pills. So a lot less wires and a lot more mobile. I was able to shower myself again, etc. On Saturday the stoma started to produce again and now it has thickened a bit better (so less moisture). When it turned out on Sunday that the wound drain also produced almost no production, it was enough for the ward doctor to send me home.

In the meantime, the surgeon also came by. Fortunately, he was able to say that the operation was difficult, but that he was satisfied with the result. This operation is more difficult for men than for women, where there is more space in the pelvic area. A little overweight or belly makes it all a bit more difficult. What exactly has been removed? In total about 20-25 cm distributed over the rectum and the sigmoid part of the large intestine. Why such a relatively large piece, when the tumor was only relatively small? Because a large amount of glands must be included in connection with metastases. And without glands, a piece of intestine cannot function, so that has to go too. The tumor is now at the pathology lab. We can expect the results in just under two weeks.

In addition to recovering, we will need the next few weeks to get used to the stoma, but the first impression is that we can live with it. As mentioned before, I'll be on it for at least three months, depending on the healing of the rectum-colon connection.


Result pathological examination (April 1, 2016)

Had a follow up meeting with the surgeon today. Still nervous before then, because we still get a surprise? Luckily not. The removed tumor with the associated glands has been examined by the pathologist and the conclusion is favorable. We already knew that a lymph node was affected and that turned out to be the case in three more (out of 24). In a "normal" tumor, this is absolutely a reason for chemotherapy. But because it has also been definitively established that the NET tumor is grade 1 (or the slowest grower) people are quite convinced that little or no traces of the tumor can be found further on in the body. The monthly injection of Somatuline is therefore not used. Incidentally, the tumor has been diagnosed as T2 N2 M0 (see previous posts in this blog).

The term "clean" is used in many cancer patients. In my case that seems to be the case. Still, I don't want to use the term "clean". Because I have no absolute certainty that there are no metastases floating around in my body. With regard to the lymph nodes of the colon carcinoma, there was some doubt between Almelo and Groningen whether they were really completely unaffected, so there is a small risk there. Moreover, with all scientific reports you see that the 5-year forecasts (for whatever form and whatever stage) are never much higher than 90-95%. In short: in many cases there is always a chance that there are residual metastases that can attach themselves somewhere in the body and grow into new metastases. Do those metastases last indefinitely? No, depending on the strength of the immune system, they can also be cleared. In general, the first two years are the most risky. Should they manifest themselves, usually in the first two years. If no traces have been found after five years, the doctors will declare you "clean" (and even then there is still a minimal chance of metastases).

What is the plan for the future now?

  • In 6 weeks I will receive an invitation to take a picture of the rectum-large intestine connection. If the connection is strong enough, the stoma will be lifted a few weeks later. That is a hospitalization of about 3 days. I described the recovery afterwards in one of the previous blog posts.
  • In the first two years, a blood sample will be taken 4 times a year and examined for the tumor markers CEA (for the colon carcinoma) and Chromogranin A for the NET tumor. If these values ​​show an increase, it is very likely that malignant tissue is present in the body. After two years, the frequency will be reduced to twice a year.
  • Every year a CT scan will be made in combination with a Ga-68 PET scan. The first can visualize metastases of the colon carcinoma, the second metastases of the NET.
  • Because the intestinal tumor originated from the hereditary Lynch syndrome, a colonoscopy will also take place every year to detect polyps or starting tumors in the intestinal tract.

In short: a lot of checks and that's a good thing. Hopefully we'll be there in time "just in case.." By the way, a blood sample has already been taken this afternoon, so next week already the first exciting moment......

Checking the colon - rectum connection (July 9, 2016)

Last Thursday it was finally time: checking the connection between the large intestine and the rectum. In the morning the X-ray examination and in the afternoon the discussion with the surgeon.
The X-ray examination was easy: an aqueous solution with a contrast medium was fed into one of the exits of the stoma (the opening that is not used now and that leads to the anus) and you could see how this part of the large intestine slowly colored black. Because the solution was very watery, the entire colon up to the rectum was quickly filled. The point, of course, was that no solution should leave the gut, because that would mean leakage.

Above is a photo of a connection where leakage does occur. The area with the white arrows is not a gut, but an amount of liquid that escaped from the yellow arrow, the place where the connection was previously made.

In my case there was no leakage and that means a good result and that the stoma can be lifted!

You could also see on the X-ray how the connection was made. Not the ends together, as can be seen at B below, but with a so-called J-pouch can be seen at D.

Because the rectum has the function of a reservoir and it has been removed for 70%, a new reservoir must therefore be created. The remaining part of the rectum connects to the side of the colon about 5-6 cm from the end. This end of the colon is closed with "staples". In this way, a piece of large intestine remains that can serve as a reservoir.

This part of the large intestine should not be too small, because then there will not be enough reservoir, but also not too large, because it will then no longer empty itself. The 5-6 cm appears to be optimal.

In order to empty, this piece of intestine has to develop a kind of muscle function (one speaks of neorectal tissue) and therefore it takes half a year to a whole year before the optimal situation is reached.

The conversation with the surgeon went well. The only "downer" was that the removal of the stoma will only take place after the summer holidays. I would have preferred that sooner. Not because I find the stoma difficult (you really learn to live with that very well), but because I would like to go back to work.... but we have to be patient a little longer. Of course I was also sent to the puncture center to have blood drawn. The blood should be tested quarterly for the tumor markers. Thursday I will be called about the result and that is actually quite scary.....


Stoma Rehabilitation Surgery (September 29, 2016)

It will happen on Tuesday 4 October: the stoma will be lifted again. Apparently it is so busy at the UMCG that it has not always been possible to schedule me. Urgent cases always preceded me. But there was now a gap in the schedule. Although not with our own surgeon, but with dr. Havenga. And despite the 25 ORs of the UMCG, it is also necessary to move to the Ommelander Ziekenhuis in Winschoten. But I've agreed, because waiting any longer probably means we're still recovering over the holidays.

What is going to happen now? It's actually simple: the two ends of the double-barrelled stoma are "sewn" together again and the bowel is pressed back in. An operation of about 1.5 hours, as I understand.

The hospital stay is expected to be 3-4 days, provided there are of course no complications such as inflammation or leakage. Once the bowels are up and running again and I can produce stools, they will send me home. But then comes a difficult part... because the last part of the intestine has been silent for half a year, surgery was performed and of course I have a much smaller reservoir because I am missing a lot of rectum. The rhythm will initially be gone and I have to count on very frequent toilet visits. If all goes well, that rhythm will recover and the end of the large intestine will increasingly serve as a reservoir (explained in previous blog post). The toilet visit should then decrease to eventually (and hopefully!) 2-3 times a day. But how long that will take is completely unknown. It goes fast for some people, very slow for others. Unpredictable.

And furthermore I will have to draw blood again to determine the tumor markers. Actually at least as exciting. I notice that every time I push it away for about 2 months and three weeks, but in the last week we are getting nervous again.... to be continued!

Also this operation behind us... (October 15, 2016)

Monday 3 October I had to report for the intake at the Ommelander Hospital in Winschoten. The operation took place on Tuesday morning around 10 am and around 1 pm I was back in the room. The procedure was smaller than the previous one (see previous blog post) and I felt reasonably good afterwards (photo below left). First liquid and easily digestible food: that went well! In the night from Wednesday to Thursday already the first stool, so it seemed that the intestinal tract was already well underway. On Thursday I also felt fine and the predicted 3-4 days of admission seemed to become reality. I would probably be released from the IV on Friday......

But things turned out differently.... in the night from Thursday to Friday the stool really became diarrhea and I had to have it about every hour. I already saw an intensive time coming up. But by five o'clock in the morning it stopped. Very slowly I started to feel bad. At the check-ups at eight o'clock no fever had been measured, but I was very sweaty and I did not feel like eating. Around ten o'clock it was completely wrong: vomiting, and not so economical.... And yes, a real déjà-vu: the stomach valve had closed again, just like then in Almelo. The inevitable gastric tube had to be reinserted (terrible is that), as seen in the photo above on the right. Now the excess stomach contents could be drained immediately. Menu for the next few days: water!

How could this go wrong again? So an immediate CT scan of the abdomen had to be done to look at the gut. Biggest fear for me: a leak at the connection. Because that usually leads to a definitive stoma having to be created: a specter.... But luckily that didn't turn out to be the case. There was at most some thickening observed at the connection, but that was edema (fluid accumulation) and according to the doctor normal. Furthermore, some thickening in the small intestine as a sign of the limited flow. There was also a bit of a fever. The doctor said that with (too) high pressure sometimes a very small amount of intestinal contents can end up outside the wall and a slight inflammation is therefore possible. So again an antibiotic, just like then in Almelo.

Yet there was a difference with Almelo. The rumbling in the stomach had remained, so not everything was quiet. The ward doctor suggested to simply be patient and to administer an extra antibiotic without any useful direct effect, but with the side effect of stimulating the stomach. On Sunday it seemed to be slowly improving: the amount of fluid returning from the tube was less than the amount of water I had drunk. On Monday that image strengthened and on Tuesday the ultimate test: the probe was squeezed, so no more liquid could return. And now no more complaints, the stomach was working again as before! Tuesday evening, much to my delight, the probe went out. From that moment on liquid food and from Wednesday evening again easily digestible.... The only problem was the ignition: the temperature did not want to remain stable at 37.5ºC.


Above the situation before and after the operation (yes I know: overweight...). On the left the double-loop stoma, two intestinal ends that protrude from the body. Incidentally, the belly becomes extra thick at that place. On the right the remaining wound. Surgeon Havenga said he deliberately did not want to stitch because the risk of inflammation would increase significantly. Such a relatively small wound provides a better option for removing contaminations via wound fluid. In the longer term, the scar will be limited visible (but that does not matter, I already have a total of 5 scars).

On Friday morning the last blood test and temperature measurement. The last one was good. At eleven o'clock the ward doctor came with the blood data: the inflammation values ​​had dropped to normal and so the discharge was a fact! Another boost: he also managed to report that the determination of the CEA tumor marker (that of the first intestinal tumor) was already in, and that it was also good. Relief, because that's exciting every time. The determination of the NET tumor marker had not yet been received, I will hear about it shortly, perhaps during the inspection of the wound. That will remain exciting for a while....... But first go home!