New (Part 2...The Details)

Gentle Reader, this post reports the details of my meetings at Memorial Sloan-Kettering Cancer Center on Thursday, September 12, 2013. It begins with a summary (the quick information), and continues with my detailed notes from the day.

This ain't art. It's history.

At the end I have a list of my outstanding questions. If you have any suggestions for me, please let me know. What am I missing? What else should I ask?

Summary

I am diagnosed with germ cell based cancer. Type 1b.

This is a cancer caused by a the type of cell responsible for testicular or ovarian cancer (gender-based). The reasons for this diagnosis are detailed below.

The Type is an early assessment. My CT scan indicates a self-contained mass. I am, however, having a PET scan tomorrow (Friday, September 13) to see if there is any spread.
 
It is considered a late relapse of my 2006 cancer (it was a non-semenoma, Stage IIb). "Late" refers to the length of time since my previous incidence of cancer (8 years ago).

The recommended treatment is an aggressive chemotherapy, referred to as "TIP" (an acronym for the three drugs administered during the protocol). The reasons for this recommendation are detailed below.

My immediate next step is a PET scan, to be administered tomorow (Friday, September 13, 2013). This test will identify any cancer sites in addition to the known psoas tumor (if there are any).

I have a follow-up appointment on Tuesday, September 17 to report PET scan results and clarify my treatment plan.

The decisions I need to make are:

• To TIP or not to TIP.
• Where to get my chemotherapy.

The latter decision is a difficult one. On the one hand I very much want to continue all treatment at Sloan-Kettering. On the other hand, doing so would be a logistical, financial, and emotional challenge. I will address this choice in another post.

For those interested, the sections below provide the details.

I thank you for caring enough to read this. I hope that it provides insight to someone, somewhere, some time that it matters.

Diagnostic Reports

I have two reports:

• Howard County General Hospital radiology (CT) scan report from August 26, 2013
• Memorial Sloan-Kettering Cancer Center Pathology Report.
  Procedure August 30, 2013; report September 10, 2013.

Radiology Report
This is a stub. I left the report at home and will update this post once I have the report in front of me.
What it reported was a 2.5cm x 3cm x 4.25cm mass along the left psoas muscle.

Pathology Report
The text below is verbatim from the pathology report.

Clinical Diagnosis and History
Current cancer DX: testicle. Surgical history: pocket of fluid collection in the left pelvis

Specimen Diagnosis

• Fine Needle Aspirate Left Pelvis
• Positive for malignant cells.
• Malignant neoplasm. See note.

Note
Immunohistochemical stains for CD30, AE:1AE3, OCT4, CD117 and SALL-4 are non-contributory due to poor cellular preservation. A D2-40 stain is positive. CD20 is negative, which argues against a B-cell lymphoma. The tumor exhibits extensive necrosis with few viable cells limiting the interpretation of immunohistochemical stains and morphology. The differential diagnosis includes a germ cell tumor. Reviewed at attending consensus conference on 9/10/2013

Statement of Adequacy
Satisfactory for evaluation , confirming the initial assessment made on modified giemsa stain.

0830 Appointment, Dr. Joel Scheinfeld

Dr. Scheinfeld presented me with the radiology report. He expressed the doctors' opinion that it is most likely a late recurrance of my original germ cell based cancer.

Regarding treatment, he could not offer anything definitive. Chemotherapy would absolutely be a part of treatment. Surgery could be a part of the process as well. Those decisions would be in te hands of Dr. Dean Bajorin.

He reiterated his confidence that all decisions to date had been correct. He referred to my decision to return to New York to see him at Sloan-Kettering, as well as the decision we made regarding the biopsy. Regarding the biopsy, he reminded that the decision to go through the vein (as oppose to the intestine) proved critical to getting non-corrupted samples.

He also expressed confidence in the prognosis. He expressed that while it is an out-of-the-ordinary situation, it is one they have seen before, so they know how to address it.

He informed me that as of my appointment with Dr. Bajorin, that Dr. Bajorin would now be "captaining the ship." Dr. Scheinfeld's role will continue as a consulting physician.

1030 Appointment, Dr. Dean Bajorin

I did not meet with Dr. Bajorin until after noon. I initially met with his resident, who gave me the basic facts. I had time to process the basics as I waited to meet him.

He arrived and examined me. He then sat and spoke to me at some length.

Germ Cell Diagnosis

He expressed that it is the consensus opinion that I have a late-relapse of a germ cell tumor. The opinion is not definitive.

Clinical Basis
As can be seen in the pathology report, not all the tests were able to be completed. The tumor has a great deal of necrosis (dead cells) inside it, and the tests rely on living tissue samples. That is why the stains for CD30, AE:1AE3, OCT4, CD117 and SALL-4 are "non-contributory"--they could not be completed.

This is because of the difficulty of the biopsy procedure. The biopsy used a very fine needle to penetrate a vein on the way to the tumor. As a result, only a small amount of tissue could be sampled. As the tumor itself is a mass containing a great deal of necrotic tissue, it was a risk that the samples would not be usable. Fortunately, working samples tested positive for malignancy (D2-40 stain), but showed negative for Lymphoma (CD20 is negative).

Circumstantial Basis
Several factors lead the doctors to believe that it is a germ cell tumor.

1. At my age, tumors in the pelvic region tend toward one of two causes; germ cell or lymphoma. Since the pathology reports negatively for lymphoma, germ cell is the likely cause.
2. My blood markers are negative. In the general population, tumor markers do not appear 30% of the time. In germ cell recurrences, that percentage approaches 90%.
3. Late-recurrence of germ cell tumors typically appear in the pelvis. Specifically, seminoma tumors, which are slow-growing, typically appear eight (8) years from the initial cancer. I am in year seven (7) from a nonseminoma tumor. However, my original tumor was 90% seminoma. By having any percentage of nonseminoma cells, a tumor is designated as nonseminoma. The point is that i had seminoma cells in my original cancer appearance in 2006.

So, based on the clinical findings and the circumstantial evidence, the doctors have diagnosed me with a late-relapse germ cell cancer.

Treatment

Three treatment plans were considered. One was recommended. There is no "Plan B".

Option 1: Surgery, Followed by "Standard Chemotherapy"

This was the original plan, pending detailed examination of the CT scans.

This was rejected, based on the scans. Analysis showed that the  tumor has invaded into surrounding tissues and structures, and they could not identify a surgical option without "negative margins". Surgeons use "negative margins" to refer to surgeries with a likelihood of cancerous materials remaining in the body after surgery. In other words, there is a low probability of surgery proving effective. Additionally, I know from my conversations with the radiologists who performed my biopsy that there are a number of arteries and nerves in that area, in addition to the major vein they penetrated. It's complicated.

Option 2: "Standard Chemotherapy" followed by surgery (if necessary)

I am using "standard chemotherapy" as lay terminology for BEP (bleomycin, etoposide, cisplatin), the standard first treatment for germ cell cancers. This option would have had me receive BEP treatments, which would be expected to shrink the tumor to a managable size. Surgery would follow on the smaller tumor, if scans and further biopsy indicated the necessity. The chemo would kill it, the surgery would remove it.

Unfortunately, BEP does not cure every patient. More relevantly, studies have shown that late-relapse cancers are resistant to BEP treatment. For late-relapse cancers, the "TIP" protocol has proven effective as a secondary treatment (following the initial BEP treatment).

Thus, option two has been rejected, as the diagnosis of a late-relapse germ cell indicates against BEP treatment.

Option 3: "TIP"

"TIP" refers to the three-drug cocktail administered (paclitaxel, ifosfamide, cisplatin). It is considered to be a more aggressive chemotherapy. Studies have proven it to be effective in two circumstances:

1. It has been tested as a secondary treatment for germ cell tumors, in cases where BEP has failed.
2. It has been tested as a primary treatment in cases with poor prognosises.

TIP would be four, three-week chemotherapy cycles. In each 21-day cycle, I would have 6-8 hours of treatment for 5 consecutive days. On day six I would receive a shot of pegylated filgrastim (Neulasta), to prevent me from getting an infection. Blood would be taken on day 15. I receive no other treatment until the day after day 21, which is the Day 1 of the second (and third, and fourth) cycle(s).

After 84 days, I would be re-scanned and monitored.

"TIP" is the recommendation, based on the diagnosis of late-relapse germ cell cancer.

It is worth noting that TIP was developed at Sloane-Kettering by the oncology group with whom I am working. They originated the protocol. It has been in use for fifteen (15) years, yet it remains uncommon.

Outlier

Dr. Bajorin: "You have an uncommon presentation of an uncommon disease. In 30 years, I have seen this, but infrequently."

Me: (smiling broadly and laughing) "I'm sorry for laughing. As you were saying that...I was thinking how typical it is. I'm always an outlier, you can ask anyone who knows me."

Dr. Bajorin: (smiles) "In this case, you certainly are. And "outlier" is the right word. We do "outlier" studies."

We talked about this a little. When dealing with a case like mine, they need to deal with paradigms. In effect, they use their experience to tailor a treatment for the way my situation presents itself. I don't fit in a neat box, with a clearly-identified protocol. While the doctors have seen my presentation and disease before, it is not common. There is a solution at hand, but the solution is uncommon.

I'm an outlier.

Plan B

I asked Dr. Bajorin. "So, what is Plan B?"

"Why would thre be a 'Plan B'?"

"It's the way I think and plan. I like to know my backups."

"Well, 'Plan B' was 'Plan A', or surgery. But we ruled that out."

I took two messages from this exchange.

1. He has confidence that TIP is the solution
2. If it comes to it, surgery will happen. Whatever the risks of collateral damage (my term), surgery would remove the mass.

Remaining Questions

As I write this, I do have a few additional questions:

• Many questions around logistics and chemotherapy.
• Could it be a nonseminoma cell? If so, is nonseminoma resistant to TIP?
• What about the tests that were "non-contributory"? I understand that circumstantial evidence points to germ cell. what is the likelihood of it being something that was missed by the non-contributory tests?
• Is TIP followed by surgery? If not, what happens to the tissues?
• What am I missing? What else should I ask?

(deep breath)

I will beat this; I've got this.