Patients Speak: Pursuing Genetic Testing

 

Mr. Philip Steward is on the Steering Committee for two San Francisco Bay area support groups

Prostatepedia spoke with him recently about his experiences with prostate cancer molecular profiling.Warmth of loveHow did you find out that you had prostate cancer?

Mr. Philip Steward: I had a rising PSA for several years at my annual physical. The doctor kept saying we won’t worry about this until your PSA gets to 10.

In 2001, I told my general practitioner that I wanted to have a urologist take a look. The urologist did a DRE and immediately said I should have a biopsy.

I was then diagnosed with Gleason Grade score 8 prostate cancer. Sixty percent of my biopsy cores were positive. My PSA was 3.85. If I had waited until that PSA got to 10, I might not be talking to you right now.

The urologist, of course, was a surgeon. He recommended surgery and said that guys like me—with my numbers—typically live seven years.

I asked him what the chances were that the cancer had already escaped the prostate. He said about 60%.

I asked then why would you do a local therapy? He said you either beat this stuff or you don’t.

Of course, it was devastating.

But that’s when I decided to get educated.

How did you find your support group?

Mr. Steward: Two good friends of mine had had prostate cancer earlier. I called them both two days after I got the pathology report. One suggested a support group in Mountain View, California, near where I live.

Senior couple having a coffee in a barHow did you come to use molecular profiling for your prostate cancer?

Mr. Steward: My first approach was to make an appointment with Dr. Leibowitz and his associate Dr. Tucker. They prescribed hormonal therapy and concurrent low dose chemotherapy. The chemotherapy consisted of five cycles. Each cycle included chemotherapy infusions every week for three weeks followed by a week off.

After this series of chemotherapy and hormonal therapy, I had no treatment for the following five years during which time my PSA slowly returned. I then went on hormonal therapy again for nine months. I was treatment free for two years. Once again, the PSA slowly returned.

When the PSA came back again, I saw Dr. Mac Roach at the University of California, San Francisco (UCSF) to have IMRT radiation to my pelvic area and high-dose radiation to my prostate gland itself.

After the radiation treatments, another five years passed without any treatment, but my PSA slowly rose again. At that point I had a multiparametic MRI at UCSF along with a biopsy of my prostate.

They didn’t find any cancer.

A little over a year ago, I went to Phoenix Molecular Imaging in Phoenix, Arizona for a C11- acetate PET/CT scan. They found that my pelvic area and abdomen were clear. The radiation treatments had been successful. But now I had metastasized cancer in my lungs— 20 nodules.

I wanted to make sure that the nodules were really prostate cancer, so Dr. Steven Schwartz at Good Samaritan Hospital in San Jose, California was able to obtain tissue samples of the nodules using a videoassisted thoracoscopic surgery (VATS) procedure. The pathology of the lung nodules proved it was really prostate cancer.

I requested the tissue samples be sent to Foundation Medicine (https://www.foundationmedicine.com/), hoping to find out if I would be taxane-sensitive. Foundation Medicine was not able to tell me if my cancer was taxane-sensitive.

Senior couple enjoying a drive

I then learned that GenomeDX (https://genomedx.com/) in San Diego could test to determine taxane sensitivity. I contacted them and submitted a sample of my lung tissue for evaluation. They sent the results to Dr. Tanya Dorff at the University of Southern California-Norris Cancer Center who thought the metastasized cancer would be sensitive to Taxotere (docetaxel) and that I didn’t need Paraplatin (carboplatin) as a part of my infusion treatment. She thought there was an overexpression of two genes for which existing drugs might be effective if the chemotherapy didn’t work.

You took the initiative to contact GenomeDX? Your doctor didn’t suggest it?

Mr. Steward: Right. My doctor really didn’t know that they could do that kind of testing.

A representative of GenomeDx, Jason Alter, spoke to our San Jose, California support group. He said they could test for taxane-sensitivity. The test isn’t FDA-approved, so it would cost money. I emailed the company and they said it would cost $3100 to test a sample of my lung tissue.

Is it normally covered by insurance?

Mr. Steward: No. It is not covered by insurance.

shutterstock_371809282Did you talk to other patients in your support group about your experiences?

Mr. Steward: I talked to everyone in my support group. No one has used this kind of testing.

Because their doctors hadn’t suggested it? Or they’re reluctant?

Mr. Steward: Probably because their current circumstances don’t present a need for this information.

You have taken a proactive approach, haven’t you?

Mr. Steward: I felt I had to. Gleason grade score 8 is not trivial.

Are you still an active member of the Mountain View support group?

Mr. Steward: I’m on the Steering Committees for both the Mountain View, California group and the San Jose, California group.

I suppose you would never have known about GenomeDX without the support group.

Mr. Steward: I went to a support group meeting two days after being diagnosed and found the level of knowledge possessed by the members impressive. There are several men in the group who probably know more about prostate cancer than my general practitioner did at the time of my diagnosis.

Do you have any advice for men considering this kind of testing?

Mr. Steward: If you were considering chemotherapy, it would be nice to know if your tumor is going to be sensitive to it, because the side effects are really harsh. I have been told that about half of men with prostate cancer don’t have a form of cancer that is sensitive to taxane-based chemotherapy.

Since 100% of men have the side effects, half the men suffer for no benefit. A series of chemotherapy infusions is expensive. It would be more cost-effective for your insurance company to pay $3100 to test for chemotherapy sensitivity than to pay for chemotherapy that doesn’t work.

If I were facing chemotherapy and had the money, I would get my tumor tested to make sure it was Taxotere (docetaxel)-sensitive.


1 Comment

Terry Lawrence

Great info. Will bring it up at my next support group meeting.

Posted: Mar 30, 2017

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