Imagine a pumpkin pie. Cut a slice. Serve it. Now cut the little "diet" slice. Serve that. Now slice a sliver of that pie—that wafer-thin morsel that just satisfies...
I'm that wafer-thin morsel. But then, deep inside, you already knew that. (The question of satisfaction remains to be answered; that's a story for a different day.)
There is some GREAT news today. My PET scan indicated that the tumor remains self-contained. There is no additional invasion. The malignancy remains intact.
Cancer veterans know how huge is this news. It means that I am not a ticking time bomb. It reduces complexity.
Combine this with the biopsy result that ruled out lymphoma, and there is genuinely (as opposed to hopeful) good news about my case.
Alas, Mine Is a Complicated Case
It's a "difficult situation". It's "rare". It's "challenging". My case requires "hard decisions".
Those are the words of my medical team. I'm not making them up.
The challenge is twofold. The tumor's location makes it difficult to access for tissue samples (you already knew this). As a result, we are working with inconclusive data.
Access. Data. My challenges.
We know that:
- I have a tumor
- It's center is dead (necrotic tissue)
- The rim is malignant
The PET scan indicates that the tumor rim is an active malignancy. It cannot, however, describe the type of tumor. Seminomas test positive. But so, too, do nonseminomas. As do teratomas (more on that later). Remember, the type of cancer cell is what dictates treatment.
Smears, using tissue samples acquired from biopsy, are how they designate type. Unfortunately, my biopsy smears are inconclusive.
And that's the rub.
In simple terms: they do not feel that they have identified the type of cancer with enough confidence to move forward with chemotherapy.
While the entire urology and oncology team believes that it is a late-onset recurrance of a germ cell tumor, they want a greater degree of certainty before treatment.
The problem is my biopsy. My biopsy was not easy. They were not able to get much of a tissue sample, and much of what they got was necrotic.
While there were smears, three out of four tested negative. Only one tested positive for germ cell cancer. The negatives, however, were not the result of the tissues testing negative, rather they were negative because the tissue was dead. So, in effect, they were non-tests.
Why Is This Important?
As Dr. Bajorin said: "We're hanging our hat on a few cells that did stain, and we have a lot riding on it. I would feel more confident with a larger sample."
A lot is riding on it.
The TIP chemotherapy protocol is a big deal. While the doctors are confident that I will tolerate the treatment, the ongoing toxicity and long-term impact of the medications are noteworthy. Yes, the chemo should kill the cancer. But in the meantime, it will be impacting my systems for many years to come.
I'm not 25 anymore. My age is a factor. Despite my fitness levels, the fact is that age is a variable when it comes to the long-term effects. Future malignancies—attributable to the treatment—are possible. Cardiac and kidney issues are possible...
My cancer treatment could give me cancer in the future. Nice.
TIP will put me through the grinder. My scars will linger. So, we'd better make sure that it is the right treatment for the right cancer.
We need to do more testing. We need to get greater confidence and security that it is a germ cell cancer, and we need to run tests to exclude other possibilities.
We will tailor my treatment to my cancer.
We need to get more samples.
Biopsy Options
There are three options in front of me.
Option 1: Needle Biopsy through the bowels
Ruled out. This option presents cross-infection risks that would greatly complicate chemotherapy (bowel matter into the pelvic bowl). Additionally, it carries the risk of contaminating my bowels with malignant cells.
Option 2: Perirectal Biopsy
Ruled out. Going up my arse presents the same complications as the needle biopsy through my bowels.
Option 3: Hydro dissection
Recommended. This falls to the interventional radiology team to perform. During this procedure they inject me with a volume of fluid dye, between the pelvic wall and the bowel. What should happen is that the fluid forces a separation of the bowel from the wall, providing the radiologist with a straight line to insert the needle and sample the tumor.
I remain complicated, however.
The problem is that I do not have a "virgin belly". Because I have had previous abdominal surgery, there is a chance that I have lesions—scar tissue—that bind my bowels to the sidewall, preventing the tissues from separating. In everyday life this is not a concern. For this procedure, however, it is a concern.
But we won't know if this is the case until we try.
Biopsy Outcomes
While the biopsy represents an additional step, the tumor is contained. I am not at immediate risk, so I have the time to complete the due diligence and learn as much as possible about my cancer.
The biopsy can have one of several outcomes:
- It doesn't work. There may be lesions that prevent the tissues from separating, blocking the needle from a clear path to the tumor.
- We get no better data. We may get samples, but the tests may have the same or similar results as the first biopsy.
- We get more data. This is the plan/hope/desire. We want viable cell samples to administer the tests.
What Else Could It Be?
There's a frightening word that floats about in my conversations with the doctors. It's like He-Who-Must-Not-Be-Named; no-one likes to say "Voldemort."
That word is "teratoma".
Specifically, TMT (teratoma with malignant transformation).
This is a very rare form of teratoma that may contain elements of somatic (non germ cell) malignant tumors such as leukemia, carcinoma or sarcoma. In medical terms, they can become morphologically malignant and develop aggressive growth.
It transforms. It becomes a different kind of cancer. In my case, it could have been a germ cell tumor at its onset, and it may now...be something else.
Treatment for a teratoma is surgery. They need to get it out of you.
There is a remote possibility that my cancer is a teratoma.
Remote possibility.
A thin slice of pie.
That's why they want more samples...
The bottom line is that they want a greater degree of certainty that I have a germ cell tumor. They want to make sure that my treatment is tailored, and that we know the risks.
They want me to know my risks.
I have an uncommon presentation of an uncommon disease. I am an outlier. I present the team with a challenge. Ultimately, they will make a clinical call based on all the available data.
And we need more data.
I'm off to the radiologist tomorrow for a consult. The adventure continues...
What will be will be what will be.
I've got this.
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