sarcoma-cancer-survivorFrom a patient interview on January 15, 2015

Dr. Stephen Comfort’s cancer journey began in 1996 when he discovered a growth in the left portion of the pubic bone of his pelvis. He went to several doctors and they had no idea what it was. He wanted it removed and the doctors said, ‘see a surgeon.’

Stephen is a Kaiser patient, so in 1996, he went to a surgeon who didn’t know what the growth was. They removed the growth and afterwards when the biopsy came back, doctors discovered that it was Liposarcoma. Stephen next met with an oncologist who monitored for him for a period of three years.

Exactly three years later, almost to the month, the growth came back, same exact location. And so, the same surgeon went in, and they removed a greater portion of the tumor. And they removed some other tissue structures that were there in that area of the pubic bone. And then Stephen went through a recovery phase. He met with his oncologist for every six months or so and had periodic CT scans. And after two years it was indicated there was no further growth, no evidence of any tumors or lesions anywhere on his body, and he was declared to be cancer free.

Almost 11 years to the date on September 1, 2011, Stephen noticed there was some pain in his left groin. He immediately had a CT scan with a follow-up of a PET scan, and there were tumors deep within the pelvis. At that time, the surgeon was at Kaiser, but also affiliated with UCSF (University of California at San Francisco). The surgeon felt that he didn’t have the skills nor did anyone he knew at Kaiser to have the skills to remove the tumors, so Stephen was referred to UCSF.

The surgeon at UCSF was a specialist in oncology surgery, and he actually had done a similar surgery. Stephen had a 10 hour surgery on January 27, 2012 to remove the tumor. They had to resect the iliac artery and vein. It was very difficult to get to the tumor because there wasn’t enough tissue or any kind of organs within that particular area, and they damaged the femerol nerve, so the result was the nerves to the left quadriceps were damaged and Stephen lost use of his left quadriceps.

The surgeon felt that he had gotten all the tumors, but he did indicate that he didn’t get adequate margins. So about three months after the surgery, Stephen started radiation therapy to that particular area which then actually damaged the lymphatics within the left pelvic region and resulted in lymphadema (swelling). Meanwhile following that surgery, exactly one week later, he developed a deep vein thrombosis that went from the common iliac vein all the way to the popliteal vein of the left leg so that clotted off, which resulted in Stephen having issues with circulation in his left leg.

Radiation therapy began in the spring 2012 to the last treatment in May, which is when Stephen developed lymphadema. It was recommended that Stephen should have a transurethral resection of the prostate gland. Stephen said it was a great surgery, and he’s glad that it was done.

And so again, Stephen had a CT scan follow-up to see if anything was going on. And in April 2013, he discovered that the liposarcoma had metastasized to his left thigh. So now in the vastus medialis muscle, the quadriceps, he had a tumor probably about the size of a large peanut or something.

Stephen shares his personal story of his experiences with the Sarcoma Oncology Center:

I met with my oncologist at Kaiser in Walnut Creek, California, where we live and she recommended that I have chemotherapy. And at that time she told me there was a person who was an expert in sarcomas, specifically Liposarcoma, Dr. Sant Chawla in Santa Monica. She referred me and we drove down in May 2013 and immediately we began the process of being approved for a clinical trial.

The clinical trial for me started in July. I had six sessions of chemotherapy and at the end of that period, the tumor in the leg had shrunk just a little bit when I finished that clinical trial. We had some follow up CT scans which showed the tumor hadn’t grown and then in April 2014, the scan indicated the tumor had grown and there were possible lesions on the liver. And then at that time I was referred again to Dr. Chawla and we began a process of another round of a clinical trial. This particular clinical trial lasted for about two months, and it didn’t work. In fact, lesions developed in the left and right apex lobes of the lungs and the lesion in the liver was still there and the tumor in my thigh had grown, had increased in size. So then I was approved for another clinical trial which I am currently on and began at the end of September in 2014, and I’ve been on this particular clinical trial since that time.

The tumor in the leg has shrunk slightly. The lesion in the liver had shrunk a little bit. And the two lesions on the lungs have shrunk slightly. So were are continuing with this particular phase of the clinical trial.

Still truckin’ along here. One of the things even my oncologist at Kaiser says, ‘You are so positive. How is that?’ It’s just the grace of God. As a Christian, I really put my trust in the Lord and I know if I were to die, I know where I’m going. I’m going to be in Heaven with my Lord. We’ve had an opportunity to administer to a lot of people, while I’ve been through this, this has been a hardship for us, but God has been faithful. And another thing that’s been really amazing is there’s a number of people who have been financially supportive of us through this whole thing without us asking anything. We could get anonymous gifts from people who would help with some of the medical expenses. It’s just been amazing.

NOTE:
Stephen is Retired, Navy Commander, Navy Seal, Naval Flight Officer, Naval Intelligence
Retired, Pastor
Ph.D. Taught 22 yrs anatomy, physiology, AP physics, biology (number of his students are doctors and nurses)

Stephen loved what he did professionally. With his wife, they have 16 grandchildren and one on the way in May. 4 children – 3 daughters and 1 son; a lovely wife and married 47 years in May.

Stephen’s recommendations to new patients:

I have found that the nurses, the staff, Dr. Chawla, Dr. Sankhala, and all of his colleagues have been absolutely wonderful. The attitude here at the Sarcoma Oncology Center is just upbeat, positive, encouraging. Vicky is right on, she is just really an amazing clinical trial director. She knows what’s going on, we communicate back and forth. I get phone calls; I can call when any issues come up or email. Usually, it’s by phone.

And probably the biggest issue we face is just the communication with Kaiser and the transfer of clinical information from the lab tests, the CT scans, the echocardiogram, etc. to here. I have almost always have to follow up with that on my own. I personally have to be the advocate for me. It would be helpful I think if the Sarcoma Center had some kind of way of accessing our medical records at Kaiser that would really be helpful or something like that. And if there was more communication going back and forth.

This place has always been welcoming. It’s been very positive and upbeat. The nurses are terrific. I love the interaction between the doctors and the nurses. If there’s an issue that arises, I can just call out to them, and we immediately talk and communicate back and forth. Once again, there’ve been a couple times when I had to call during off hours and after a few minutes and a little bit of time passed, I was usually able to talk to the doctor or talk to one of the staff people to take care of a particular that I may have had.