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.

News Not Good - Thursday, July 23, 2009

I got a text from Pete. He had gone to Memorial Sloan-Kettering CC in NYC by himself to get the results of his first follow-up CT scan. All he said in his text was that he will need chemo and that he would tell me more when he got home because he was waiting to see another doctor.

I felt numb. He didn't mention another surgery, so I assumed that the cancer had not returned to the original site. With soft tissue sarcoma, the lungs are the most likely place where this form of cancer will metastasize.

He had just started back to school this summer, completed both courses with A's. Things were starting to look up for him, he was getting ready to register for the fall semester and was talking about what he would like to do when he completes his degree.

Sometimes life bites.

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.

Soft Tissue Sarcoma - The Beginning

One day, about 3 years ago, my son, Pete, called me in to look at a very small lump on his left arm. It was located about mid-way between his armpit and elbow, and felt about the size of a small pea. I suggested he show it to his doctor, but told him that it was probably nothing more than a cyst.

He did go to his doctor, who told him pretty much what I told him; most likely a cyst, but to keep an eye on it and if it got larger or became painful to come back.

There was not much change for over a year, but one day he again asked me if I thought it had gotten bigger, and it had. I would say that it was now the size of a good sized pea. He went back to his doctor, and again was told that it was probably nothing and to just keep an eye on it.

It wasn't very long after, maybe a month or two, when Pete again asked me to take a look. I was shocked to see that the lump had grown to the size of a grape. It scared me because of the sudden and dramatic change in size. This time, when he went back to his doctor, the doctor recommended that he go to a surgeon to see about having it removed. He gave my son the name of a local surgeon and my son called and made an appointment.

The surgeon must have had a busy calendar, as the first available appointment was about 2 months out. On that day, Pete was just about to walk out the door when his cell phone rang. It was the surgeon's office and they needed to reschedule because the doctor had an emergency. The first available appointment was 3 weeks later.

We were getting concerned because the lump was now the size of a walnut, and it was causing discomfort when my son moved his arm because it was actually rubbing against his side. I was relieved when he finally went to the appointment, but when he got home he was very upset. This surgeon had been very dismissive and told him that he could remove it but it was only cosmetic and his insurance company most likely would not pay to have it removed.

The first thing my son did was to find another surgeon and call for an appointment. When he explained that he felt this was rather urgent they gave him an appointment about 2 weeks out. This surgeon looked at the mass and immediately recommended an oncologist, and told my son that when he called to set up the appointment to tell them that he may have a "sarcoma".

My son made the call to the oncologist and the first date they offered was about six weeks away, so my son mentioned that the surgeon had told him it may be a "sarcoma". That one word prompted an appointment just 3 days later.

That one word would change our world.