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.