Consult With Radiological Oncologist - January 04, 2010

First the biopsy results: Yes, the tumor in his brain has the same pathology (MFH sarcoma or Malignant Fibrous Histiocytoma) as the primary tumor removed from his arm 1 year ago and those found in his lungs in July. No surprise.

Dr. W-2 gave him 3 options: 1) no radiation, 2) stereotactic radiation, or 3) whole brain radiation. He explained each option. I’m going to try to describe what he told us to as accurately as I possibly can.

No radiation - The CT/MRI scans that were done immediately following the surgery showed the entire tumor had been removed. The problem here is that, just as the surgeon had explained immediately following the surgery, malignant cells can still remain but are too small to be detected by the scans. These cells can remain dormant and never change (unlikely), or they can take hold where they are, or migrate elsewhere, and establish another malignant mass (either or both of these are likely). He explained that the surgeon, having visually inspected the area, indicated recommendation to proceed to radiation therapy because he felt one of the “margins” was not sufficient to be confident that all cells were removed.

Sterotactic radiation – This is like GPS for radiation. The very concentrated beam is directed to the exact site of the tumor and radiates that area and a specified margin around the area, limiting the amount of radiation toxicity administered to a small area healthy tissue, a very good thing. He gave 2 choices for this treatment: standard or tomotherapy. Standard is administered over the course of a single day. It requires that the patient to be immobilized (essentially having your head in a brace with screws that go through the skin and contact the skull in about 4 strategic locations so it doesn’t move). It is uncomfortable, but it’s over in 1 long day. Tomotherapy uses a plastic mask that is molded to the patient’s head. It does not require clamps or screws so can be removed and replaced, assuring the patient’s head is in the same location as it was before. This way, they administer short doses of sterotactic radiation over the course of 5 days.

Whole brain – This is exactly what it sounds like. He explained that this therapy is recommended when there are multiple sites throughout the brain. The radiation is not as strong, and therefore may not be as effective, particularly with sarcoma which is fairly radiation resistant.

Pete opted for the Sterotactic Tomotherapy, so we moved to the next stage: preparation.


Thursday morning he has an appointment with the surgeon to remove the 24 staples that run up the back of his head. These have to be removed to allow for undistorted “stealth” MRI/CT images that will provide computerized, focused aim for the beam of radiation. These scans are scheduled for Thursday afternoon. I’ve changed the bandage several times and everything seems to be healing very nicely, but the surgeon will have the final word as to whether it has healed enough to begin.

Day 1 - Post Surgery - December 24, 2009

Today the roller coaster was on its way up, thanks to Dr. LaN, the oncologist who sent Pete for the MRI last week.

This morning we went to the ICU waiting room and met one of Pete's long-time buddies sitting there. He had just been visiting with Pete a few minutes when he was asked to wait in there because they were taking Pete for his post-op MRI. I know MRIs take some time, so we sat and chatted for a while and then I got up and took the gift
tray of cookies (Bruce had picked up a couple of them for me to give to the nurses) and went in to check whether Pete had returned.

As luck would have it, he had just been in the room a few minutes when one Dr. LaN came in to talk with him. She was the one we had seen on Friday and had ordered the immediate MRI. She was a bit perturbed because, just as a "wet" sonogram had been ordered, she had ordered a "wet" MRI (see 12/19/2009), but the doctor who did the MRI did not report the findings immediately. They were not called in to the oncologists until Saturday morning, which precipitated their immediate call to Pete alerting him to irregularities in his brain.

She talked to us at length, answering our questions with clear and detailed explanations. She exhibited so much knowledge, caring and concern that, as she spoke, I felt my whole being start to relax. Don't get me wrong, she did not offer us a rosy picture, but the way she presented the information certainly helped to allay much of the fear of the unknown that I had been feeling.

Though the pathologist most likely will not conclude the biopsy testing until Monday, the doctor gave us 3 scenarios. The first and optimal one is that it is a benign tumor. Not very likely, but still a possibility. The second and most likely scenario is that it is sarcoma and had its origins in the primary tumor removed last January. This scenario, though not optimal, will necessitate several weeks of radiation therapy and then most likely places treatment right on track with the chemotherapy that was already planned to counteract the lesions in his lungs. The third, another highly unlikely scenario, is that it is a different malignancy, but even in that case there would be radiation and chemo treatments.

She did not promise anything more than what she and the other doctors could deliver. They will be providing us with the tools and ammunition to fight the cancer: radiation, chemo, support and hope.

Gina and I visited with him again very briefly this afternoon. His father and half-brother were there when we arrived, so I just said a quick "hello", gave him his cell phone charger, and stayed about 5 minutes and left. It's almost 8 PM now and Bruce and I will be going back up to say good night in a few minutes.

The doctors are still working on alleviating his headaches. You can see the pain in his face but the good news is that he's reporting the headache pain has gone down from "9" to "6 or 7" on a scale of 1 to 10.
Having him home in the next day or two would certainly be one of the best Christmas presents I could get this year and it's looking very promising right now.

One Day at a Time - Friday, July 24, 2009

The biopsy is scheduled for August 6. It requires an overnight stay, and they set up a bed for a family member in the patient's room so I'll be spending the night there with my son. They do the biopsy lapariscopically, as they will be doing the excision some time down the road, while a CT is in progress so they can guide the instruments.

The following week they'll begin the chemo. Two weeks on, one week off. It still all seems surreal and frightening. After the surgery to remove the sarcoma at the primary site the doctors were pretty confident that the tumor had been removed completely, but it seems that some cells may have already begun to relocate but were too minute for the first after-surgery scan to detect.

The doctors advised him that sometime between now and the first chemo treatment he should consider having his sperm frozen. I can't even imagine the thoughts that must be going through this young man's head. He's already been through so much, even before the cancer. My heart just aches for him and I feel so helpless. All I can do is be there for him and love him. The sad fact is that as much as I wish and pray, I can't make it go away.

Surgery to Remove the Primary Tumor – Initial Treatment

It was mid November. Things suddenly began to move very quickly. I went with Pete to his first appointment with Dr. S, a local oncologist. Although the reason for the appointment was terribly frightening, the doctor’s manner was very soothing. He was extremely professional, but not at all condescending. Calm and compassionate, he helped both Pete and I to relax a bit because we felt we were working with someone who was extremely competent and confident. After he had done a physical examination of Pete he spoke with us and explained that it would be necessary to have a biopsy done for an accurate diagnosis but that all the signs pointed to a “soft tissue sarcoma”. He ordered special CT and PET scans and initiated arrangements for the biopsy.

Within days the scans and biopsy were completed and Pete returned to Dr. S to get the results. They confirmed the suspected diagnosis. The doctor recommended that because of the rarity of this particular cancer (only about 1% of adult cancers are identified as sarcomas) Pete should seek treatment at a cancer center where they had the experience to effectively deal with sarcoma. Pete chose to go to Memorial Sloan-Kettering Cancer Center in New York City.

We were into the holiday season, starting with Thanksgiving. Fitting in appointments, tests, and more appointments during this hectic time was difficult, but we got it done. Surgical resection of the site is generally the first treatment. Pete underwent surgery at MSKCC on January 26, 2009, to remove a soft tissue sarcoma from his left arm.

Dr. S-2 was the surgeon who performed the removal. He met with Pete’s father and me at the conclusion and felt confident that he had successfully removed the mass with sufficient “margins”. Because of this, he felt that the adverse effects of post-operative radiation therapy outweighed the advantages and for the same reason, no chemo therapy would be administered. The size of the mass was approximately 5.2 cm x 4.2 cm x 4.5 cm. The stitches closing the incision were rather large, which the doctor explained allowed him to close the wound without resorting to the use of a skin graft taken from Pete’s thigh.

Pete’s recovery had some rough spots. Because of the size and depth of the incision, the amount of tissue, muscle and skin removed to assure that a sufficient “margin” was achieved, he was sent home with a Jackson-Pratt drain. For those who are unfamiliar, this is a plastic bulb at the end of a tube, the other end of which is in the surgical site. Every morning and evening we had to “milk” the site and record the amount of fluid we removed. He suffered two infections that prompted visits to the MSKCC emergency room for antibiotics during the first few weeks before the JP was removed.

Eventually, everything did heal and Pete underwent some physical therapy. Much of the muscle on the underside of his upper arm was gone, so the therapy helped him regain some of his strength. Winter turned to spring and on warm days that Pete had off from work you could find him working on his boat, preparing for summer, the season he enjoyed the most. He had lived close to the Jersey shore all his life and had inherited a passion for ocean fishing from my dad. He was feeling pretty good and had his vacation planned around fluke season.