post-surgery testing program /// part I

Immediately following surgery, together with physical recovery started the journey of testing and active monitoring. The testing program works to determine if the removal of the primary cancer (i.e. the tumor/testicle) via orchiectomy was sufficient, or if additional treatment (chemotherapy, radiation, additional surgeries, etc.) would be needed in case the cancer had spread to other parts of my body or was at a high risk of recurring in the future.

In my experience, there were three main components to this testing program:

• CT Scan (internal imaging)

• Tumor marker levels (in blood)

• Biopsy of the removed tumor/testicle

These can get pretty technical, and I'm certainly no expert but will do my best to explain what I learned through the process.

CT SCAN

As I mentioned in the "recovery from surgery" post, a couple of days post-surgery I was wheeled in to the radiology ward of the hospital for a CT scan. The purpose of this internal imaging scan was to see if there was any sign of the cancer having spread beyond my testicle into other areas of the body. While I had previously had the MRI, this apparently was not sufficient to see everything and had been confined to my groin area only, and was anyways a couple of weeks old now. Testicle cancer, depending on the type of testicular cancer (more on that later) can be a fast growing and aggressive cancer after all, even if highly treatable.

Testicular cancer, if it metastasizes (AKA spreads), tends to do so to the lymph nodes in the abdomen (behind the stomach) first. This is because this is where the testicles descended from as an embryo, so I guess there is a natural pathway for the cancer cells to travel. Beyond that, the lungs are often next, followed by other parts of your body - for example like with Lance Armstrong, the brain. So, the CT scan tries to see if there are any optical signs of the spread, i.e. enlarged lymph nodes, signs of growth on lungs, etc.

The CT scan itself is much faster than the MRI and way less claustrophobic, thankfully.

A few hours after my CT scan, I received the results. As I detail below re: the high tumor markers in my blood, I was warned by the doctors that the news from the CT scan probably wouldn't be good. So when I received the news that there were no signs of metastasis in the scan, it was a lovely surprise - as it was for my doctors. A great result that meant further treatment looked unnecessary. I cannot express how relieved I was.

TUMOR MARKERS

Tumor markers are proteins or other substances which show up in the blood at elevated levels, either because the cancer cells themselves are producing them, or the body is producing them as a response to the cancer. It's not blood cancer, just markers of cancer somewhere in the body, as the name suggests. There were three tumor markers being tested for in my case for testicular cancer - each with a nice acronym - AFP, β-HCG, and LDH - but as β-HCG and AFP were the key ones in my case, for simplicity I will focus only on those two from now on. Each marker has a normal level, the concentration of which you would expect to see in a healthy, cancer free patient (see table below). Each marker also has a half life, which equates to the expected amount of time it takes for the tumor marker level to halve, assuming the cancer cells are no longer present in the body (see table below). For example, with AFP which has a half life of 5-7 days: if on Day 0 I had an AFP level of 100 and I was cancer free, by Day 5-7 I would expect to have an AFP level of 50.

Tumor Marker	Unit	Normal Level	Half Life
β-HCG	mU/ml	< 2.00	1 - 3 days
AFP	ng/ml	< 7.00	5 - 7 days

The tumor marker testing had actually begun before surgery, way back at my first urology appointment where I had fainted after having blood taken. Those results came in the mail just before my surgery, with an ominous handwritten note from my urologist saying "normally means additional treatment needed". Basically, the AFP and B-HCG markers were at very elevated levels (189 and 671, respectively), suggesting the cancer was more advanced and likely to have metastasized (and therefore need chemotherapy).

Those suspicions were also harbored by the doctors at the hospital when they tested my blood immediately following surgery - although the B-HCG levels were dropping already, the AFP levels were still really high at 847, meaning metastasis was the likely scenario. So, when the CT scan came back clear as mentioned, it was an amazing surprise. This however, did not mean I was fully in the clear yet, for two reasons:

1. I learned that I would need to return every week for a blood test, as the medical team would be actively monitoring the tumor markers until they hopefully declined to their normalized levels within ~ 6-8 weeks. I was assured though that given nothing had shown up in the CT scans, a decline to normalized levels was the most probable scenario; the outlook was good.

2. The results from my biopsy were needed, in order to see if any of the cancer had spread to the lymphatic tissue locally in my testicle. While this tissue had been removed in the surgery, the presence of cancer cells in that tissue is correlated with a higher likelihood of the cancer recurring in the near future, and thus a decision would be needed about undergoing at least 1 round of chemotherapy proactively. More on that in the biopsy section.

In part II, I'll detail out point (1) above, the weekly tumor marker testing program that began after I left the hospital. The results of (2) are detailed in the section below.

BIOPSY

After they surgically remove the testicle and associated tumor, the specimen is off to the lab for further analysis. To the dismay of many friends who asked, I did not get to keep the cancerous testicle, preserved in a jar and placed on the mantle like some sort of twisted trophy. At least I was not offered this option, unless something was lost in translation ;)

About a week after surgery, I returned to the hospital to receive the biopsy results.

My results: a 5.3 x 4.8 x 4.3 cm, non-Seminoma tumor with 60% yolk sac / 40% embryonal carcinoma, L0; V0

Clear? Didn't think so. I'll break that result down into constituent parts to try to make it a bit more understandable...

SIZE [5.3 x 4.8 x 4.3 cm]

This is the easy one, and pretty self explanatory. My tumor was already big by this point, about the size of a lime (as the blog name suggests!). It had increased in size (volume) by nearly 50% in just two weeks since my MRI scan at the time of diagnosis. This shows how quickly the tumor was growing, which is a nice segway to...

TYPE OF TUMOR [NON-SEMINOMA]

There are two categories of testicular cancer:

• Seminoma - slower growing, tend to affect older men, normally in their forties and older depending on the type

• Non-seminoma - faster growing, tend to show up in younger men between their late teens and early thirties

At 35 years old, I guess I am right on the edge of being "old" vs. "young" depending on who you talk to - but in this case my youth won out and I was unlucky enough to have a faster growing non-seminoma tumor. Non-seminoma's are further sub-classified into sub-types. Another beautiful segway to...

TUMOR SUB-TYPE [60% YOLK SAC, 40% EMBYRONAL CARCINOMA]

Non-seminoma's are classified into sub-types, and are often a mix, as was the case for mine. I had 60% yolk sac and 40% embryonal carcinoma. The urologist at the hospital who explained my biopsy results indicated that the embryonal carcinoma was the more aggressive and higher risk portion, as they tend to grow quickly and spread outside of the testicle. At the same time, depending on what source you read on the internet, yolk sac tumors can be of concern in adults as well.

LOCAL INVASION [L0; V0]

Admittedly, there were many other classifications on my biopsy, but these were the last two which were specifically circled and explained to me. My understanding (and the online resources don't seem to be as numerous for this part), is that it mainly indicates whether the cancer cells had spread to local lymphatic tissues within the testicle (tissue which had since removed in the surgery). Though the tissue is gone, it correlates with a much higher rate of the cancer recurring in a short time horizon. Thankfully, L0/V0 indicated there were no cancer cells invading that tissue. If they had, I would have had a decision on my hands - to undergo 1 round of chemotherapy, which would reduce my chances of recurrence from 50% to 3%. Or simply, wait and see - continuing to test regularly and hoping to not be on the unlucky side of that 50%.

RECAP

That was dense and technical, so before moving to part II of this post, to recap where I stood following the first tests post-surgery:

• CT Scan - GOOD! no sign that the cancer had spread beyond the testicle

• Biopsy - MIXED! while the tumor was a big one, it had not spread into local lymphatic tissue which would have meant likely undergoing 1 round of chemotherapy to reduce the chance of recurrence. The type of cancer was the more aggressive version

• Tumor Markers (Blood) - NOT SO GOOD! One of the key tumor markers was super high, the other was high although encouragingly had started to drop after surgery

With these results in hand, so began the process of weekly blood tests to monitor the rate of decrease in the tumor markers, hopefully back to normalized levels as expected given the clear CT scan. In which case no additional treatment would be needed.

That was the idea at least...