Another Loose End Tightened Up

The results of my colonoscopy on November 9 were good, except that they wouldn’t be final until the biopsy report of the one small polyp that they removed came back. The report still hasn’t shown up in the portal, where it was supposed to be within seven to ten days (it’s been 20 days). However, today I tracked it down in the doctor’s office and got a copy: “fragments of tubular adenoma(s)”.  A tubular adenoma is considered to be pre-cancerous, if it is not discovered. However, this one was noticed and removed. So…no colon issues now, and a repeat colonoscopy isn’t suggested until five years have passed. Moving on!

Insurance Ready to Go in January

Today’s mail included a letter from Social Security, confirming that—as of January 1—I am enrolled in Medicare Part B (medical), as well as Part A (hospital). I already have confirmation from the United Health Care people (AARP’s chosen vendor) that I have Medicare supplemental insurance coverage as of January 1. So…I’m hopeful that PTI (UF Health’s Proton Therapy Institute) will be able to schedule my next visit in early January.

Plans for 2017

Here’s the current plan for 2017, based on what I learned and decided on yesterday.

Early January: go to Jacksonville for the detailed MRI, a chest x-ray, a bone density scan, and the first ADT shot.

Late March: go back to Jacksonville for the Simulation phase, which will take two or three days. During this visit, I will have a series of imaging studies and procedures, which will help develop my personalized treatment plan. The procedures include placing fiducials (three small gold markers) in my prostate and creating a customized body mold to hold me in the same position for each treatment. Together, these will help ensure that the proton beam will go exactly where it’s supposed to go each time. Following this visit, the PTI team will develop my personalized treatment plan, which may take two to three weeks to complete.

Mid-April: back to Jacksonville again, for the proton beam treatments. I’ll be there for five and a half weeks, going home on weekends.

After that: follow-up tests, as needed.

Decisions, Decisions

I had to make several decisions during the visit with my doctor at PTI Wednesday.

MRI: The next phase, the Simulation process. includes designing the exact size and shape of the proton beam. Before they can do that, they need an MRI to pinpoint the exact location of each part of the cancerous tissue, especially near or outside the boundaries of the prostate. Since it would take most of the rest of 2016 for CHP to approve payment for that MRI (assuming they would—not a given), and then additional time to schedule it, I elected to get the MRI in early January when Medicare will pay for it. It requires special high-quality MRI equipment and procedures, and the best nearby places for this are at teaching hospitals in Birmingham, Gainesville, and Jacksonville.  I chose Jacksonville.

SpaceOAR: This is the Spacing Organs at Risk device. The prostate is right next to part of the lower intestine, which we don’t want to irradiate. The most common way to reduce this risk is to insert a sturdy uninflated balloon through the rectum, fill it with water, do that day’s radiation, deflate the balloon, and remove it. With SpaceOAR, a liquid is injected between the prostate and the lower intestine. This liquid quickly expands into a semi-solid substance to provide more complete prostate-intestine separation. The SpaceOAR stays there throughout the treatment weeks, and after about three months simply dissolves. The doctor and I agreed that this would be best for me, but I need to get the MRI first, to confirm that the cancer is confined within the prostate.

Length of Treatment: The traditional course of treatment, for both IMRT (Intensity Modulated Radiation Therapy, the most common form of radiation) and proton beam therapy is once every week day for up to eight weeks. My doctor told me I could choose to have the proton therapy once every weekday for five and a half weeks, with a higher dose each time (but with a lower total dose). This method has been used for several years, but it’s not as common as the longer duration treatment and there isn’t as much data for its effectiveness and side effects. However, it seems to be about the same with regard to both, and I chose the shorter term.

Androgen Deprivation Therapy Treatment (ADT): Androgens are male hormones, mostly testosterone. Testosterone is well known to fuel prostate cancer growth, and permanent elimination of testosterone is often prescribed for prostate cancer that has metastasized outside the prostate. Testosterone reduction can also be used in conjunction with other treatments. My doctor suggested doing this to weaken or kill some of the cancer cells so as to increase the effectiveness of the proton therapy. Of course, there are side-effects. These may include hot flashes, sweats, fatigue, and other hormone related issues. It gives one new appreciation for what menopausal women endure. I decided that the temporary drawbacks are outweighed by the long-range improvement to my prognosis, so I chose to have the ADT. This means I’ll have a shot with a three-month dose before the proton beam treatment starts, then another shot that will continue the ADT for another three months. Therefore, the start of the proton beam therapy will be delayed, but the ADT treatment can start in early January—sooner than the proton therapy could have started.

First Visit to the Proton Therapy Institute

Wednesday morning I checked in at PTI and met with the Financial Counselor. We discussed my insurance issues, and I paid for the day’s consultation.  Next I met with my Nurse Case Manager, who went over the many forms I had already completed, asked some additional questions, provided some more information about proton beam therapy, and gave detailed advice about dietary do’s and don’ts during treatment. Chief among them: de-emphasize antioxidants during treatment, and avoid foods that produce gas (which can make the prostate move around during treatment).

Finally, I met with my doctor. He’ll continue to be my doctor at PTI during and after treatment. He first reviewed my situation with me, and told me I fell into the “intermediate risk” category (because the Gleason score from the recent biopsy was 7) and into the “unfavorable” subcategory. It’s unfavorable because that Gleason score was 4 + 3, not 3 + 4… that is, there was one core out of the twenty that had more cancerous tissue (level 4) than suspicious tissue (level 3). After a detailed review of various issues, and the most thorough DRE (digital rectal exam) I've ever had, he concluded that the cancer does not seem to have spread outside the prostate. Therefore, I’m a good candidate for the proton beam therapy and can expect a good outcome.

No tour of the facilities today. The regular 4:00 tour was cancelled on account of people having other things to do the day before Thanksgiving.  They did have the regular Wednesday lunch, buffet style, for all patients and caregivers. I got there late, having spent a lot of time with my doctor, but still enjoyed the food and the atmosphere. It was quite a diverse group, including children getting proton therapy for small cancers that are difficult to treat in any other way. I was the only American at my table; the others were from Canada and England.

Drive to Jacksonville, and Try Out Third and Main

Tuesday I left Tallahassee for the 165-mile trip east on I-10 to Jacksonville. The traffic was heavy, construction projects abounded, and there were a couple of crash scenes. However, I made it to Jacksonville in time to check in at Third and Main.

Third and Main was built as a condominium building, but was turned into an apartment complex oriented toward people getting treatment at UF Health’s Proton Therapy Institute. It’s located just a mile from the PTI, and even closer to a couple of parks. There’s a casual restaurant on-site, and the furnished rooms are spacious and comfortable. I plan to return there on future visits to Jacksonville.

Moving Forward

I now have an appointment scheduled with UF Health in Jacksonville on Wednesday, November 23 (the day before Thanksgiving), at 9:00 am. This is for the Consultation visit: the first step in getting proton beam therapy there. I’ll meet with my Financial Counselor, my Nurse Case Manager, and the person who will become my go-to doctor. If my doctor and I both agree to it, the following step will be the Simulation visit, hopefully in early January. Simulation includes a series of imaging studies and procedures that will help lead to development of my personalized treatment plan. The eight-week Treatment phase will begin about three weeks after the Simulation visit.

While in Jacksonville Wednesday, I also hope to get a tour of the facilities, and look at some of the housing options that will be available while I’m staying in Jacksonville for the treatments. It’s starting to feel as though everything is falling into place…except for confirmation from Medicare that I’ll be on Medicare Part B as of January 1. I should be hearing from them soon.

When One Door Closes…

“When one door closes, another door opens. But sometimes you have to open it yourself.” –unpublished sage from Tallahassee.

A couple of weeks ago I asked my primary care physician to refer me to UF Health in Jacksonville for consultation on proton beam therapy. He forwarded my request to my HMO (Capital Health Plan) to make sure they’d pay for it. Capital Health Plan eventually considered the request, and turned it down. I could appeal their decision, but that would take at least several more weeks, and even if they did eventually approve it I’d run out of time to schedule the consultation visit in Jacksonville before the end of the year.

So…one option now is to not do anything until after the first of the year—when the consultation and the treatment will be covered by Medicare. However, I’m anxious to get the show on the road (that is, get myself on the road to Jacksonville). So, I’m going to take door number two: pay for the consultation myself. It will cost less than I had expected, especially since UF Health gives a 30% discount to people who can’t get their insurance to cover the consultation. I’m waiting now for the appointment coordinator to call and schedule it.

Colonoscopy

I had the colonoscopy yesterday, as requested by UFHealth before they could consider proton beam therapy for me. Preparation for the colonoscopy started with a couple of days of a low-fiber diet, then clear liquids only the day before the procedure. Late that day I began the colon cleansing process, which—mercifully—was divided between that day and the morning of the procedure. The procedure itself went well—at least that’s what they tell me, I was blissfully unaware of what was happening. No problems showed up in the results that should cause any problem with the therapy. Now I’m just waiting for approval of the proton beam therapy by my HMO.

First-Hand Advice

Sunday evening Ursula and I went to a retirement get-together for the pastor of her church. One of the other guests was Steve, the man who gave me the Bob Marckini book back before I knew anything about proton beam therapy. I enjoyed getting a lot of details from him about life at the proton center in Jacksonville, and I’m more certain than ever that I want to go there too. There were two other men at the party who’ve dealt with prostate cancer; I had talked to one of them before about it, but the other was a surprise to me. It does help to be able to talk to others who’ve had similar experiences…as well as those who’ve made different decisions.

Colonoscopy Consultation

The consultation went quickly today: a review of my medical records, an explanation of how the preparation process has changed in the last nine years, and the scheduling of the colonoscopy itself. Good news: it won’t take until January (as I was first told), and it won’t take until later this month or December (as they had said they’d try to arrange). Instead, I was offered this coming Monday or Wednesday. I took Wednesday, November 9, because Ursula will be able to pick me up after the procedure.

Forms Day

Big paperwork day today. First, Ursula and I went online to take advantage of the TCC Benefits open enrollment period, which ends tomorrow. She removed me from her health insurance (HMO), effective January 1, so I can start depending on Medicare. Otherwise I run the risk of being in the middle of treatment when her insurance ends, at her retirement.

Next I submitted forms online to get ready for a consultation meeting to prepare for a colonoscopy. It seems that if you’re going to be 70 soon, you need to have a consultation before you can get a colonoscopy. Who knew it would be that difficult?

After that I spent an hour waiting for a call back from Social Security so I could find out what forms I need to add Part B coverage to my Medicare, as of January 1. I did get the forms, but they can wait a little bit. Since tomorrow is the last day of TCC's Benefits open enrollment, their HR department may not be eager (or able) to fill out a continuous health insurance coverage form for me, and I need that before I can send in the main Part B form.

Finally, I prepared nine pages of forms to send to UF Health to apply for proton beam therapy; the good news is that I could email a PDF of the package to them rather than make a trip to the Post Office and wait for the USPS to make their appointed rounds in Jacksonville. Now UF Health can start getting the medical records I authorized them to get, and start on their preliminary assessment of my fitness for the proton beam therapy. Their final assessment will be made (or not) at our consultation meeting which will be after they've had time to review what they're getting now.

Okay, Proton Beam Therapy. Where and When?

Proton beam facilities in the U. S. are not that common. The closest to Tallahassee is the UF Health Proton Therapy Institute, in Jacksonville, mentioned in my October 28 post. That would mean staying in Jacksonville during the week (1 mile from the treatment center), and driving home each weekend (167 miles each way, mostly on free-flowing I-10). Pro: easy getting there each day. Cons: paying rent for 8 weeks, and a long drive home on weekends.

Another possibility is the Maryland Proton Treatment Center, in Baltimore. That’s 57 miles from my older daughter and her husband in Reston, Virginia. I could drive from there to Baltimore and back each day for treatment. Pros: good times with my daughter, son-in-law, and granddaughter, and no rent. Cons: That 57-mile drive takes an hour at best, and with common traffic can be twice that. That’s important, because during the treatment weeks it’s possible to have fatigue issues and got-to-find-a-restroom-now issues, and both can be troublesome on a long drive on a crowded highway. Also, I’d be away from home for a longer stretch, with at most one or two flights back to Tallahassee (eating up some of the rent savings).

And the winner is: Jacksonville.

When? UF Health probably won’t have an opening to start treatment until January. That’s not bad, since my doctors say the need for treatment isn’t urgent. Also, it means treatment won’t conflict with our annual week at the beach around Christmas. And, I’ll be able to take care of some preliminaries. I’ll get a colonoscopy soon, as it’s been nine years—UF Health wants to know if I have developed any other problems near the prostate during that time. I’ll also fill out and send a bunch of forms in to UF Health, and schedule and carry out an initial consultation with the doctors in Jacksonville. I’ll also make sure my insurance is in order…that’s a post in itself.

Radiation Oncologist, Part 2

The follow-up appointment with my Radiation Oncologist didn’t take long. He provided some more current information on prostate cancer treatment, I told him I still wanted proton beam therapy, and he told me, enthusiastically, that I should get the proton therapy.  He believes that his radiation therapy is better. However, he also believes that if I did not get proton therapy and had an adverse result, I would forever regret not getting protons. He concluded by saying he thought I’d have a good result with whatever treatment I chose, and that he would be available if I needed anything from him in the future. 

More on an anti-proton research paper

Today I came across an article that comments on the JAMA article by Sheets et al, mentioned in my October 28 post Material Provided by the Radiation Oncologist. This additional paper is

●Reviews in Urology, 2014, 16 (2)

Proton Beam Therapy for Localized Prostate Cancer 101: Basics, Controversies, and Facts, Eric S. Wisenbaugh, MD, et al.

After describing the results published by Sheets et al, the authors commented “However, among the several flaws of this study, the most fundamental was that outcome surrogates (ie, claims for colonoscopy) were used to measure toxicity rates. This would be an imprecise surrogate for any population, but is particularly so in PBT patients…this study should not be used to relay any important morbidity information to inquiring patients.

Pro-Proton Therapy Research

The material provided by my radiation oncologist (see my first October 28 post) was oriented against proton therapy (PT) for prostate cancer. However, other studies of PT put it in a more favorable light. The following article was included in the packet that UFHealth sent me. All of the authors are associated with UFHealth, and their research reports on UFHealth patients.

●International Journal of Radiation Oncology Biology Physics, 95(1)

Five-Year Biochemical Results, Toxicity, and Patient-Reported Quality of Life After Delivery of Dose-Escalated Image Guided Proton Therapy for Prostate Cancer.  Curtis Bryant, MD, MPH

From the last paragraph: “It is concluded that image guided PT provides excellent biochemical control rates for patients with low-risk, intermediate-risk, and high-risk prostate cancer."

Translation: Proton therapy is effective at controlling prostate cancer.

Continuing with the last paragraph: "The actuarial rates of CTCAEv4 grade 3+ GU and GI toxicity rates were low.”

Translation: CTCAEv4 means Common Terminology Criteria for Adverse Events, version 4, published by the National Institutes of Health, National Cancer Institute. Grade 3 means “Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self care ADL [activities of daily living]. Grade 3+ means Grade 3 and worse. GU means genitourinary (reproductive and urinary organs), and GI means gastrointestinal (digestive organs, such as the stomach and intestines). 

In other words: Proton therapy resulted in low rates of medically significant side effects.

UF Health in Jacksonville

There are many things to consider when deciding among cancer treatments. One of them is cost; will my insurance cover this? My insurance is with a local HMO, and I already knew they cover traditional radiation treatment. I called the HMO and asked about coverage for proton beam therapy. They said they would consider it, using their established protocols. Well, at least it wasn’t a flat NO.

For more information, I called the nearest facility to Tallahassee, the UFHealth Proton Therapy Institute, AKA the Jacksonville Proton Therapy Center. Web address: floridaproton.org. I call it UFHealth for short. It’s affiliated with the University of Florida’s medical school in Gainesville. The receptionist at UFHealth couldn’t guarantee my HMO would cover my treatment there, but she explained in great deal what paperwork would be needed and what treatment there would involve. Recognizing that I wasn’t going to remember everything, she said she would send me a packet of information. Overnight. This was yesterday afternoon, the 27^th. The packet arrived at 10:15 this morning. It’s full of useful information and forms to fill out, and paperback copies of two books. One of them was the Robert Marckini book I described in my October 26 post, and the other was Protons versus Prostate Cancer Exposed, by Ron Nelson (who was treated at UFHealth). I had previously downloaded this in Kindle, so I already knew that he was just as happy with his choice to get proton beam therapy as was Bob Marckini. One small part of the information packet was a sheet about SpaceOar (Spacing Organs at Risk) available at UFHealth. This is a new device that reliably separates the prostate from the rectum so that any radiation (traditional or proton) is much less likely to cause injury to the rectum (the primary location for the “gastrointestinal morbidity” mentioned in the Sheets paper in my earlier October 28 post).

Material Provided by the Radiation Oncologist

● Journal of the American Medical Association, 2012, 307(15)

Intensity-Modulated Radiation Therapy, Proton Therapy, or Conformal Radiation Therapy and Morbidity and Disease Control in Localized Prostate Cancer. Nathan C. Sheets, MD, et al

My comment: The authors of this four-year-old paper are all based at the University of North Carolina. They include four radiation oncologists, 3 epidemiologists, two statistical analysts, and two specialists in health policy and management. UNC does not have any proton beam equipment, and the author profiles do not show any personal experience with proton beam therapy. The study did not examine long-term survival or short-term side effects (less than one year). The worst thing they could say about proton therapy is “…proton therapy-related patients were more likely to receive a diagnosis of gastrointestinal morbidity and undergo gastrointestinal procedures.” They do not address the severity of the “gastrointestinal morbidity” nor do they mention the percentage of patients affected.

● Journal of Applied Clinical Medical Physics, 2015, 16(3)

Proton-beam therapy: are physicists ignoring clinical realities? R. J. Schulz, PhD

My comment: This study is mostly theoretical and focused on economics. They do say that “…the clinical outcomes of PBT [proton beam treatment] are no better—nor any worse—than those achieved by IMRT [intensity modulated radiation treatment] or SBRT [stereotactic body radiation treatment]. “Of four retrospective studies that compared toxicities following PBT or IMRT, three showed but minor differences between the two modalities, while the study by Sheets et al showed significantly higher GU toxicity following PBT.” The Sheets study is the one described above, and this paper does not address that paper’s deficiencies. 

● NCCN [National Comprehensive Cancer Network] Clinical Practice Guidelines in Oncology

Prostate Cancer, Version 3.2016

This group does not find any increase in any side effects for PBT compared to radiation. “The NCCN panel believes no clear evidence supports a benefit or decrement to proton therapy over IMRT for either treatment efficacy or long-term toxicity. Conventionally fractionated prostate proton therapy can be considered a reasonable alternative to x-ray-based regimens at clinics with appropriate technology, physics, and clinical expertise.”

My summary: The proton beam therapy is just as effective as radiation (which is about as effective as surgery), but it’s more expensive. It might be a little worse for gastrointestinal side effects (the least severe of all the possible side effects), but that has not been shown definitively.

Radiation Oncologist, Part 1

During the brief meeting with my urologist on October 5^th I did have a chance to ask about getting a second opinion from the radiation oncologist I’d heard about. My urologist agreed, and said he’d contact his office right away. I didn’t get a call back from the radiation oncologist’s office to set up an appointment for almost a week. I don’t know why it took so long. By then, the earliest available appointment was for October 26.

The radiation oncologist was very informative. He answered most of my questions about the biopsy report, reviewed my PSA history and symptoms, and described in detail the pros and cons of the major treatment forms. For me, he recommended either radiation or surgery (not brachytherapy, aka radioactive seeds). When I asked about proton beam therapy, he agreed that it would do as good a job of getting rid of the cancer as surgery or radiation. However, he expressed doubts about the side effects and gave me copies of several journal articles on the topic. He also had the opinion that proton beam therapy is best for a small number of situations where surgery is difficult and radiation may be problematic. These include some brain tumors, some cancers of the eye, and some cancers in small children. He believes that proton therapy centers are branching out into prostate therapy mostly to help pay for the expensive equipment they need when it’s really appropriate. 

The oncologist answered my questions so thoroughly and discussed options in such detail that we ran out of time. Rather than cut me off, however, he immediately had his staff make an additional appointment for the following Monday. That gave me time to review the material he’d given me and think up new questions.

Biopsy Results, Finally

I arrived early for my 3:55 appointment on October 5^th, as usual. After a long wait, I found out that my urologist had run out of time to see the remaining patients. Fortunately, he was able to squeeze me in later that afternoon. He described the results, primarily in terms of the Gleason score.

Of the 20 cores, two had mostly or entirely missed the prostate, eight were clear, two had “atypical small acinar proliferation (ASAP),” four had some suspicious cells, and four had definite cancerous cells. Three of those last four had Gleason scores of 3+4=7, and the fourth was 4+3=7. The Gleason score therefor was essentially the same as in the previous biopsy. Two of those four had “perineural invasion.”

I didn’t see the biopsy report itself until I got a copy after the appointment. Because of that delay, I didn’t get a chance to ask about notes mentioning the cores with no prostate tissue, ASAP, or perineural invasion. I also didn’t know that the core locations would be described in the form of a grid system, with no explanation of how the grid coordinates related to the locations of cores taken in the first biopsy.

A Google search told me that ASAP is nothing to worry about, and perineural invasion probably isn’t. I also searched for prostate biopsy grid system images and figured out more or less how the grid was used in my biopsy. Comparing it to the locations of the cores in the 2015 biopsy, I found that basically it was the same regions that were problematic. Conclusion: not much had really changed in the last year and a half, although it certainly hadn’t improved.

Looking Ahead While Waiting for Results

While waiting for the biopsy results I heard from several men who’d already been treated for prostate cancer. One of them had had surgery in Tallahassee. After the surgery, he had years of dealing with bad side effects; he advised me if I had surgery at least to not get it in Tallahassee. Two others had external beam radiation therapy (EBRT) in Tallahassee, with the same radiation oncologist. Both were very happy with the process…with both the oncologist and with his office staff.

Another man had been treated for prostate cancer with proton beam therapy. He had such excellent results—both with getting rid of the cancer and with the lack of side effects--that he strongly recommended I consider proton therapy. He also provided me with a book, You Can Beat Prostate Cancer and You Don’t Need Surgery to Do It, by Robert Marckini. Mr. Marckini also has a website, www.ProtonBob.com. Mr. Marckini provides detailed descriptions about what it’s like to get the proton therapy, day by day. The book was published in 2006 but after reading it I did Google searches on proton beam therapy. I also downloaded a couple of more recently published books. The consensus seems to be that proton beam therapy is at least as good as surgery and external beam radiation at getting rid of the cancer…and it has side effects that are much less problematic than with other treatments. I decided to look into this further.

Saturation Biopsy

By late June, 2016, my PSA was up to 6.4. This still wasn’t grounds for panic, but my urologist wanted to do another biopsy to make sure the cancer wasn’t getting out of hand. My first biopsy had been a standard 12-core sample. The saturation biopsy was to include 20 cores, including 17 via rectal probe and 3 external, through the perineum. This required a hospital visit, with full anesthesia.

The biopsy was on September 12, 2016. I had no discomfort during the procedure, of course, as I was unconscious. The hospital prescribed strong pain pills for my recovery, but I didn’t need them. At the hospital after the procedure, I learned that the results would be available in 5 business days. 

That afternoon and the following day I called my urologist’s office a total of four times to find out when my appointment was scheduled. I was cut off all four times, and able to do no more than leave my name and reason for calling. No one called back. The following day, Thursday the 14^th, I sent a “secure message” via the urologist’s web site. I got no response until Monday the 19^th, when I got an automated message saying that my message had not been read. I called again, and this time I was able to talk without being cut off. They told me then that due to some sort of mix-up no appointment had been made for me. By then, the earliest appointment available was on October 5, nearly three and a half weeks after the biopsy—far more than the five days for the results of my first biopsy, or for the “five business days” I had expected this time.

Prolaris, by Myriad Genetic Laboratories

Prolaris is a test to determine the aggressiveness of prostate cancer, based on an examination of changes to the DNA of a biopsy sample. It’s relatively new, but has had good results in giving a better idea of how the cancer is developing than just looking at the slides under a microscope. It was suggested by my urologist, who noted that my HMO had approved it for other patients of his. I immediately agreed during my February 17, 2015 appointment that I wanted the Prolaris test. I don’t know when the staff at my urologist’s office sent the request to the HMO, but the HMO did not respond until March 20, more than a month later.

When the HMO did respond, it was to deny coverage. I appealed that decision, providing specific reasons it was important to me. My urologist sent the official appeal to the HMO on March 24. After some communication issues between my urologist’s staff and the HMO, the Prolaris test was finally approved on May 14.

The next step was to get the biopsy slides sent to Myriad Labs for the Prolaris test. There was another paperwork delay in Tallahassee before the pathology lab sent the biopsy slides to Prolaris.

On June 15, 2015, Myriad Labs notified me that the results were ready, and being sent to my urologist. I was able to make an appointment with him for June 18. The whole process of getting the Prolaris results had taken four months, from February 17 to June 18. This was not because of Myriad Labs, which has excellent customer service.

The Prolaris result was a score of -0.5. This means the aggressiveness of my cancer fell into the middle of the range of men whose biopsies show low-to-intermediate cancer risk. This was not bad enough to get immediate treatment, nor good enough to stop worrying about it.

Second Opinion at Moffitt

My urologist suggested several places I should consider to get a second opinion. I picked the Moffitt Cancer, in Tampa…mostly because it is covered by my HMO (Capital Health Plan, CHP). The original biopsy slides went to Tampa, and Moffitt had re-analyzed them before I arrived in Tampa on May 20, 2015.

A doctor at Moffitt reviewed the biopsy slides, and agreed with the conclusions of the previous pathology lab. He described the pros and cons of surgery, which is his specialty, and noted that he had much experience with the DaVinci (robotic) surgery. He also suggested that I contact a radiologist (specialist in using radiation for prostate cancer treatment), noting that there are several excellent ones in Tallahassee. However, having heard my urologist (a surgeon) describe the problems with radiation therapy, I didn’t pursue that.

Early Diagnosis

My primary care physician believes in the value of PSA (prostate specific antigen) tests as part of a routine semi-annual review of blood test results. My PSA scores drifted gradually upward, and when they crossed the 4.0 threshold in January, 2014, he referred me to a urologist to find out why.

I had no family history of prostate cancer, and for years the DREs (digital rectal exams) had been negative. Still, after ruling out a prostate infection, and seeing my PSA rise to 4.6, my urologist thought I should have a prostate biopsy to make sure there was no cancer. On February 12, 2015, he did a standard 12-core biopsy. It made use of a rectal probe and required only numbing--no anesthesia. It was uncomfortable, but not really painful, and didn't take long.

After a couple of weeks I got the results: several small cancerous and suspicious areas, resulting in a Gleason score of 3+4 = 7. That's only a little bit worrisome, and rather than immediate treatment I chose "active surveillance" That sounds more proactive than "wait and see what happens."