- There's no single course of treatment that works best for everyone. So you'll have to figure out what you're going to do - and you'll largely have to do it on your own. Your options will include watchful waiting (a pleasant term meaning that you'll just keep you eye on your PSA), surgery, various forms of radiation, seeds or brachytherapy, a combination of radiation and seeds, Androgen deprivation therapy (ADT or hormone therapy), hifu, cryotherapy and several others.
- Doctors are like used care salesmen - in the sense that they will sell you what they have or what they know. Not everyone mind you, but enough that you can generalize the following: urologists will sell you surgery, radiologists will sell you radiation, and so forth. The challenge is the fact that your cancer has been diagnosed by a urologist and so they'll first put surgery in your mind.
- You have time to make a good decision - don't rush into one. An interesting aspect of Prostate Cancer is that it is slow to grow, at least initially. The good news is that most Doc's will tell you that you have somewhere close to three months to make a decision and initiate treatment (presuming that you're going to do something other than watchful waiting). There's a lot to learn, however, so you'll need to get on your horse. I've heard stories of Doc's pushing patients to make a decision quickly though thankfully I did not experience this in my learning journey.
- There are some good resources available The internet clearly has changed things for us guys diagnosed with Prostate Cancer - providing ready access to diverse and numerous sources of information. My advice - stick to the mainstream prostate cancer websites and avoid message boards, at least initially. Why - the websites generally provide solid, sound information that has been screened by someone with at least the hint of a medical background. Messages boards are screened by no one and the information may only have relevance to the individual making the post. And it may be dead wrong. We may be screened for PSA and Gleason score - but us prostate cancer patients are not screened for IQ. I found http://www.pcri.org/ to be particularly helpful and their helpline staff person Jan Manarite to be a Godsend.
My journey:
December - diagnosed on December 19th, Dr. F suggested that I pick up Patrick Walsh's book "Surviving Prostate Cancer". It was a good recommendation. Not the easiest read, but of the books on Prostate Cancer that I've read it was the most encyclopedic - and that is its value. We began to make some appointments for the so-called second opinions. Kind of a misnomer in the sense that there's only going to be one opinion (generally) as to whether you have prostate cancer. So what you're really doing is getting perspectives or information treatment options.
I also started a daily 'to do' list - to help me make progress in scheduling tests, doctors, gather information and stay focused. It worked. I also included three items or guiding principles on each days 'to do' list:
- We’re not looking back
We’re not victims
We’re not alone
I also included the following
- We will survive this!
And lastly, I developed an equation of sorts:
- Think healthy + eat healthy + run healthy = be healthy
All were important at various times.
January
Had a very helpful conversation with Dr. Michael Manyak, formerly of George Washington University Hospital and now with Cytogen (Prostascint Scans). Dr. Manyak was that invaluable, objective physician expert. In addition to recommending several physicians to see - he laid out the options with more clarity than can be gained by a book or website. I met with Dr. Julio Pow-Sang at Moffitt Cancer Center, who is the exception to the rule that doctors are like used care salesman. Dr. Pow-Sang offered several options along with a descriptions of advantages and disadvantages. I also had a good meeting with a series of Docs at Jefferson University. It was touted as a 'multi-modality' session which made me hope for something that never appeared. I did, in fact, spend time with a radiologist, surgeon, nutritionist and social worker (along with a few residents, interns and others thrown in) but there was never an opportunity to have the different disciplines (particularly the surgeon and radiologist) debate or even discuss what would be the best approach given my particular 'biology'. By the way - that term, Biology, deserves its own post . . . . and maybe will get one. As a result, the session was helpful but not at the level I hoped it would be.
Toward the end of the month, things heated up with visits to the renowned Dr. Patrick Walsh and Dr. Charles 'Snuffy' Myers. I'll have a separate post on my visit with Dr. Walsh. Dr. Myers - while clearly opinionated about the various characters (and I mean that positively) in the prostate cancer field, provided clarity an direction in part as a result of his expertise and in part because he has been through this prostate cancer thing himself (visit http://www.prostateforum/ for information about Dr. Myers and the American Institute of Diseases of the Prostate).
Up to this point I was thinking primarily about surgery with the understanding that I would likely need radiation as an adjuvant therapy. Perhaps I held out hope that only surgery would be necessary - and not the radiation, but Dr. Myers provided some clear interpretation of the Han and Partin Tables that began to make it clear that radiation would likely be the better approach. While all of this was circulating through my head we decided to put a hold on a surgery date with Dr. Walsh.
I should add that our friend Silvana gave me a kick start to healthy eating. I had already learned that Michael Milken had eliminated red meat and dairy from his diet in order to hold his prostate cancer at bay (and it continues to work for him). Silvana's book on cancer and diet gave us a focus on supplements, foods, etc. All were critical considerations - and beginning in January I dramatically changed my diet and began a series of supplements.
February
Early in the month decided that I would pursue a course of Androgen Deprivation Therapy (through a Combined Androgen Blockade) together with radiation/seeding treatment at the Dattoli Cancer Center. I could go on about the various reasons for choosing this course (and may at some time blog more about it) but in some ways the choice was made at a much higher level. Let me try to explain. During a conversation with Julio Pow-Sang at Moffitt, he suggested that I may be a better candidate for radiation (rather than surgery). Moffitt offers various forms of radiation therapy - so it was not as if Dr. Pow-Sang was turning me away. However, once he mentioned radiation, I had a somewhat involuntary reaction . . . which was to tell him that 'all roads are leading me to Dr. Dattoli'. Not sure why I said it (though it was true) and it wasn't the most polite thing to say when another physician is explaining his organization's radiation options - but as I said, it was involuntary. This has happened to me only a very few times in my life. The first time was nearly 30 years ago when I met my (to be) wife on an evening when I was supposed to have dinner with another woman (well, girl, actually). As I began to explain to Gretchen (the other woman, so to speak) why I was choosing to go with Carol that evening, the words "this is an investment in my future" came out. I had no reason to know that or to say it - but there it was. Same thing with 'all roads are leading me to Dr. Dattoli'. It was true - they were (from Dr. Manyak to Dr. Myers, to his book that I had ordered on line) but I had not, at this point reasoned through the process of determining that (a) I would seek radiation as part of my treatment or (b) that I would use Dr. Dattoli.
The process of getting an appointment was a bit odd. You're placed on a list that will be called by either Dr Dattoli or Dr Sorace after 5 PM during specific days. You're not told exactly when that call may come in - but if you miss it, they will go on to the next person. (Ah, perhaps the sense of urgency that is critical to the sales process was being created. This would tie to my theory of used car dealers and Dr's). But anyway, the call came while I was interviewing two residents of a retirement community. I execused myself for what I thought would be a ten minute call - but it turned into at least 30. To be frank, I thought Dr. Sorace was helpful - but a bit too rote with his 'presentation'. Nevertheless I decided to take the next steps of qualifying my insurance plan, scheduling an appointment, etc.
Androgen Deprivation Therapy began on February 14th - with a Lupron shot received on February 26th (by Dr. Fitzpatrick). Told Dr. Fitzpatrick that I was planning to run a marathon in a week and he quickly pointed out that training for a marathon while undergoing ADT and radiation was stupid. I didn't have time to tell Dr. F that the training was almost over, that I had already run 26.2 miles on Sanibel island and the marathon was the following week. Just didn't seem an important part of the conversation - what with my pants down, bent over, with a horse needle headed toward my ass.
March
Ran the Sarasota Marathon (as described in another post) with my sister-in-law (who kindly ran a lot slower so that we could finish together) on March 2nd. Never really thought I would run a marathon and definitely didn't think I would be doing it after a diagnosis of Cancer. Also took care of some additional tests during the month - the ProstaScint scan being the key test. Bowel prep is similar to the colonoscopy (oh what fun) and it involves laying perfectly still within an MRI type machine for over an hour. Its easy to lay perfectly still for nearly two hours - all you need is the threat that if you move, the clock will start all over again.
The ProstaScint Scan provided good news - no sign of metastatic prostate cancer. Unfortunately I've learned that the reliability of the ProstaScint Scan is questionable. So I'll take the reading and be happy about it - but I'll be very wary of it representing reality.
April
First visit to Dattoli Cancer Center. I'll see Dr. Sorace (though I'm secretly wondering why I'm seeing Dr. S rather than Dr. Dattoli). And I haven't felt too good about my telephone conversation with Dr. Sorace - but I have to confess that I grew to appreciate Dr S very quickly, once we met in person. It could have been a number of things that provided me with the assurance that Dr S was the right Doc for me to be seeing. But I mostly attribute it to the color doppler ultrasound that he tele-illustrated just like John Madden. Thorough, thoughtful, direct are the three words that come to mind.
By the way, the color doppler ultrasound shows less cancer than the biopsy seemed to suggest - but I realize that some of this may be due to the effects of the ADT. I accept the results, however as another indication that the message I received shortly before I had the biopsy. . . . 'things will get worse before they get better'. The 'worse' part was represented by biopsy results, the incorrect clinical staging, and some other items that happened during mid to late December. But now (January through March and later) I was beginning to feel the 'better' phase. The news from various test results was mostly good (save for the endo-rectal MRI which suggested that the cancer may be in my seminal vesicals.
May
With my blood tests indicating that the ADT was working (reducing my PSA dramatically and my testosterone also dramatically) I was cleared to begin my first course of radiation therapy - IMRT (Intensity Modultated Radiation Therapy). The radiation consisted of 28 sessions - five days a week for nearly six weeks. Other than being caught in the same black hole as Bill Murray in Ground Hog Day - IMRT was a piece of cake.
The above is not entirely true, but true enough to post. The one aspect that wasn't so peachy was partially my own fault. Prior to the radiation beginning the Doc's set up something called a 'simulation'. Sounds easy enough - but it turns out its not really a simulation at all. Its the pre-tests that are needed to direct the radiation beams. You get catheterized for a short time so that some dye or contrast can be inserted through your urethra. I guess it provides some mapping assistance so that the radiation beams can avoid the urethra. Doc S told me that I should drink plenty of fluids after the catheter was removed and that if it burned a bit when I peed - then I should drink more fluids. Sounded like good advice - but not quite as specific as I needed. Once I finished the so-called simulation (a word that now ranks with 'the check is in the mail') I headed to the Tampa airport to fly north in order to do a Board Retreat the next day. First fluid that came to mind was a very tall beer- so I ordered one with dinner while I waited for my flight. Thinking of the advice Dr S provided, I ordered a second one figuring the more fluids the better.
So far, so good. But about 1 AM I woke up and had to pee (I could write urinate here - but frankly one thing that happens when you get Prostate Cancer is that you get a pass on saying such things as pee). And oh my god - did it burn and hurt and burn. Did I say how it burned? And bled.
But in about 12 hours it resolved and I realized later that the use of the term 'fluids' in the prostate cancer world means water. They could say 'water', but fluids has a nicer ring to it.
And on Memorial Day weekend I ran a 5-k. Didn't run it fast, mind you, but I ran it. And that's what counted.
June
Radiation runs through June 20th - and after that I'm released to head back to New Jersey and Pennsylvania. Damn it felt good to be headed 'home' though we were really fortunate to have Danny and Eileen give us their townhome in Venice for the six weeks I was receiving radiation. Carol made the trip back and forth from Long Beach Island to Florida three times during the six weeks - even with a store to run.
On the plane back to Philadelphia - I don't drink any beer (just in case you were wondering).
July
I'm still on the ADT - energy level is decent and the PSA and Testosterone level continue to be way low. I get my second lupron shot from Dr. Fitzpatrick. He asks about the marathon - and gives me a high five. Kind of cool - particularly when he tells me that I'm going to be okay. I put it in the same category as 10 commandments on a tablet.
August
SEEDS! I'll put this in a separate post - but August 6th I received my seed implant and all went well. Spent the night in the hospital with Carol. The nurse told me that she would be in around 3 AM to remove the catheter - and about 1:30 Am I was wide awake, looking at the clock, anticipating that the damn catheter would soon be removed. Carol was awake too - and I explained that I felt like I did when I was a kid on Christmas eve. She said she would never think of Christmas the same way again.
I promised my prostate pal Lee that I would keep track of the details of the seeding - from start to finish. He used the title 'Bottoms Up' when emailing me prior to the seeding and I integrated that into the title for the post and my emails to him: "The Bottoms Up Chronicles"
November
So now it is the first of November and this coming week I'll fly back to Sarasota to complete the last course of radiation - 10 treatments targeting the areas around the prostate (to ensure that any cancer that left the prostate but remained in the area is zapped). I feel good that this will wrap up the radiation sequence - but a little nervous that it also represents the end of that treatment. And soon (though I'm not sure how soon) I'll know whether it worked. And that makes me nervous.
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