Entries in this journal appear here in reverse chronological order like a blog (i.e., oldest at the bottom). If you’re new here, you may find it easier to navigate to a post by using the links below, which are in normal chronological order.
Comments are welcome! In the page’s present state, the comment box appears ‘way down the list.
- Wednesday, February 13, 2019 – How We Got Here
- Sunday, February 17, 2019 – Telling the Family
- Monday, February 25, 2019 – Seidman Cancer Center
- Wednesday, February 27, 2019 – My Cancer Team
- Friday, March 8, 2019 – Decision
- Sunday, March 17, 2019 – Distracted at the Piano
- Wednesday, March 27, 2019 - OK, Now We're Getting Serious
- Monday, May 13, 2019 - Planning and Scanning
- Thursday, May 30, 2019 - IMRT Begins
- Friday, June 21, 2019 - Midterm Report
- Saturday, July 13, 2019 - Ringing the Bell
- Tuesday, November 5, 2019 - Checkups
- Wednesday, April 8, 2020 - Six-month Update
- Tuesday, October 20, 2020: Still Managing
Wednesday, October 13, 2021: An Annual Update
I got some good news from oncologist Prateek Mendiratta yesterday: three bits of interrelated news, in fact.
It’s been a year since my last Trelstar injection. That’s the Androgen Deprivation Therapy (ADT) drug that has stopped my system from producing testosterone for the past 2-1/2 years. There hasn’t been anything to report for the past year: my blood tests keep coming back with undetectable PSA levels, but without testosterone to fuel the tumor that’s what you’d expect. The question was what would the PSA do when my androgen level returns to normal, a process that may take years.
So here was the good news:
- My testosterone level has returned to about half of normal.
- My PSA remains undetectable, meaning . . .
- The return of androgens has (so far at least) not stimulated the cancer.
The best meaning for this would be that there is no longer a cancer to be stimulated. We won’t know for a while; I’ll have my next labs in six months. It’s too soon to declare victory, but this is good news.
Thanks again for your thoughts, prayers, and encouragement.
Tuesday, October 20, 2020: Still Managing
It’s hard to believe all the changes we’ve seen since last spring, when I last posted!
I’m one of the lucky ones: COVID-19 hasn’t been particularly dangerous to me. That’s because so far as least, my treatment regimen has involved radiation and hormone therapies, not chemotherapy. Chemotherapy definitely compromises the patient’s immune system, which isn’t good in a pandemic; but as I’ve said, that’s not what I’ve had. So we’re being prudent, but we have it easier than some.
Nothing is guaranteed, but so far things are going well for my recovery. I had my semi-annual blood test a couple of weeks ago, and since then met with my oncologists (radiation and medical). My PSA remains undetectable, and as a reward I got what should be my last ADT shot. (Trelstar, which blocks the production of testosterone, which feeds prostate tumors). I will not miss those.
In the spring I’ll have another blood test and see the oncologists again, but no ADT shot. You would think that in these six months my testosterone will start to recover and we will get an idea whether the PSA has started to inch up, but NO. They tell me that my testosterone level probably won’t recover until late 2021–so if the cancer is going to start up again we probably won’t see it until fall, and maybe even beyond that.
So . . . in the meantime we continue to enjoy life and take it easy. My overall health has improved: down twenty more pounds, and another size, since spring. For the first time in years, a blood sugar count in the recommended range. And I got out on my bike this summer, which felt wonderful–I may ride it a bit this fall even as the temperatures drop.
With all this, I am reminded that I am very fortunate. Thanks for your continuing prayers and concern. Next check-in in six months.
Wednesday, April 8, 2020: Six-month Update
Thanks as always to all you who hold me in your prayers and concern. This is a time of year when we think about such things: especially this year, as we shelter in place and keep in touch with Zoom, FaceTime, Skype, and quaint items like voice calls and text messages.
I wrote my last update about six months ago, and I promised another about this time. This week I had two oncology appointments–one in-person, one virtual–and as expected there’s not much news, which is a good thing. I won’t repeat material from the last entry, much of which hasn’t changed; I will point out some changes since then.
I reported then that my blood sugar had risen. (I can raise that score unassisted, thank you, but I got some help from the ADT shots.) Since then I’ve been working on exercise and diet, and a January test for Dr. Molly Friedman, my PCP, showed my blood sugar had come down five points. I’m carrying about 30 pounds less than my all-time maximum, and about 20 less than a year ago. Not svelte, but now I can close the collars on my dress shirts.
Last week I gave another blood sample, this one for the all-important PSA test, and that level remains undetectable. We discussed that good news in my appointments with Dr. Prateek Mendiratta (medical oncology) and Nurse Practitioner Kate Sandstrom (radiation oncology). Kate’s was easy, a virtual appointment, dialogue about symptoms, etc. Dr. Mendiratta’s was in-person because they haven’t figured out yet how to give virtual injections. So at that visit, I got to enjoy my third ADT shots, with the fourth and last scheduled in October.
Now that we’ve reached the halfway point of ADT, I asked both oncologists: how long after the last shot before I start making androgens again and return to my frisky adolescent self? Well, it turns out that it’s going to be a while: that last Trelstar shot will continue to suppress my manlitude until, probably, sometime late in 2021. As my testosterone level rises through that year, the PSA score is expected to rise. If it settles in at a new normal level, great; if it blows past that, then we’ll have more work to do.
A friend who has dealt with this says that this stage of treatment is the most frustrating time because there’s really nothing to report, and yet that “nothing” doesn’t prove a cure. Expect more of the same in about six months. And again, thanks.
Tuesday, November 5, 2019: Checkups
It’s been a while since my last entry on this page; and, judging from the questions I’ve been getting, it’s time to post an update.
On October 7, right after my return from Italy, I had back-to-back appointments scheduled with Nurse Practitioner Sue Flick and Medical Oncologist Prateek Mendiratta. Both of them have office hours at the Minoff Medical Center (formerly Chagrin Highlands), which is much easier for us to travel to than the main UH campus in University Circle. Before leaving for Italy in late September, I had given a blood sample so that the information would be ready.
The two appointments became one. There’s currently no medical need for me to see both Sue and Dr. Mendiratta, and the two had conferred before we arrived. I decided to continue under Dr. Mendiratta’s care: as a medical oncologist, his specialty matches my situation better than Sue’s, which is urology.
Heather and Lynn went with me, and the good news was that my PSA is in the undetectable range. (Less than .1; by comparison, it was a 7.77 a year ago that alerted us to a problem.) As a lovely parting gift, I received my second Trelstar injection. I’ll have another one in April and, presumably, the last in October. (This is the ADT therapy; for a refresher, see “Now We’re Getting Serious” below from March 27.)
Then today, Lynn and I headed once again to Seidman Cancer Center downtown, to see Nurse Practitioner Kate Sandstrom. How different to go to that location–the scene of my radiation therapy sessions–without an extra half gallon water in me!
I had thought that this was a one-time exit check from radiation therapy, but it turns out that Kate will be part of my team for a while. The purpose of my appointments with her are mostly to monitor side effects from the RT. I had thought that the recovery from those side effects was a one-way street, but Kate used “George,” a model of the male innards, to show where some side effects can arise even many months after the radiation therapy is over.
So–from Kate no poking, no prodding, no injection, just a review of how things are going. I’ll see her again in May. We did manage a quick hug with Dr. Dorth.
And, four months after RT, and now seven months into the ADT, how are things going? Cue the bullets:
- The most important news, already mentioned: the PSA test established that the cancer is at least at bay. I’ll continue with the tests about every six months.
- Most likely from the ADT drug Trelstar, I continue to experience fatigue and shortness of breath. I need to “rest my eyes” fairly often.
- My blood sugar is elevated a bit, again probably from the Trelstar, so I’ll be working with a nutritionist to try to reduce that.
- Flomax (which helps with urinary function) can cause drops in blood pressure when standing, and I need to get up slowly so I don’t get light-headed.
- I’m up two or more times a night for bathroom trips, since those mechanisms took a beating during the radiation therapy.
And the prognosis? Hopeful but uncertain. My testosterone level should start returning to normal starting about April 2021, as the last ADT injection starts to wear off. Kate says that it can take a year after that for the testosterone to return to its normal levels. (So no “Italian Stallion” until probably 2022, although I have a cute T-shirt courtesy of Noël that asserts otherwise.) The PSA should rise a bit with my testosterone levels, hit a new baseline, and stay there. That will tell us whether the cancer is eradicated, but for now there’s no reason to think otherwise.
For now, doing fine, thanks. It’s debatable whether I will have anything to report for a while. I’ll still be in treatment for many months, so all the prayers and concerns are still much appreciated.
Saturday, July 13, 2019 – Ringing the Bell
We passed another milestone this week with my last my radiation treatment on Tuesday. One of the traditions in the Radiation Department at Seidman Cancer Center is “ringing the bell” when RT is concluded; that bit of business appears here. The video is a bit grainy, but the memory will always be clear to me! Here’s a photo of Heather, Lynn, and doctors after we finished up:
Lynn has been my companion on almost these trips, cooling her heels in the waiting room. Heather has come along with us to several of the consultations. It’s good to have more than one set of ears to listen to the doctors, and Lynn and I have amused ourselves by trying out alternate routes to Seidman. (Turns out there are many!)
So, what’s the result? The answer is that we really don’t know. From now on, we continue to monitor my PSA, which is the best indicator of success. So far my PSA has dropped like a stone; but even assuming that it continues to drop, we won’t really know how successful this has been until after the Androgen Deprivation Therapy ends, in March of 2021. Then we’ll see if the PSA stays down.
In the meantime, I’ll continue to be checked and monitored. I’m to see a medical oncologist in two to three weeks, and I have other appointments set up into November.
And how do I feel? Well, first, it’s been a relief these four days not spending each morning drinking (water) and driving! Second, my digestive system is slowly returning to normal. I finally took enough Imodium to stop the four weeks of steady diarrhea that was the main side effect for me; but the radiation has irritated both my bowel and bladder, and so I still don’t go very far from a bathroom. They tell me that this is likely to continue for several weeks. “This too shall pass” (pun intended), or so the saying goes.
Beyond that is fatigue, which I started to feel with the ADT and may continue until that ends in 2021. But RT intensified that, so I was napping a couple of times a day in recent weeks, and now I’m generally able to get away with just one.
I had put off so many things until the RT was over that I’m just now beginning to dig myself out from under them, and in the days since Tuesday I’ve had a bit of time to reflect on this experience so far. First I had to get used to being a cancer patient, and now I’m trying on the label of “cancer survivor.” All cancers are different, and so are the the patients; but I’m guessing that we have some things in common. Those include fear of something that can kill us, resignation to make the sacrifices necessary, awe at the capabilities of modern medicine, and gratitude for the support of friends and family.
And so, once again, thanks to you for your support and encouragement as we complete this step in recovery and move on to whatever is next.
Friday, June 21, 2019 – Midterm Report
Friends and relations always ask (and I appreciate it, believe me) how I’m doing. The short answer is this: on Tuesday, I had my fourteenth radiation treatment, which was the halfway point in this portion of the treatment. I’m getting most of my treatments on the the latest and greatest of UH’s linear accelerators, an Elekta Versa HD. (See the video here.) And mostly, I feel OK: tired, with some annoyances. Those annoyances are why this midterm report isn’t being posted until today.
Feel free to stop reading here. Really.
If you continue, I’ll yammer on in some detail about those annoyances. Many of them aren’t matters for polite conversation; but many of you–out of concern, morbid curiosity, or a desire for self-education–have said that you want that detail. So here we go.
First, while the treatments themselves take less than a quarter hour (usually at 10:30), with travel and parking the procedure ties up about three hours each weekday. I’m retired, so there’s no job to affect; but I do have a busy life with a lot of interesting (to me, anyway) activities, and the treatments and their side effects are putting a hole in those activities.
The impact goes beyond the three hours, because I’m a bit less functional for part of day, mostly because I’m tired and I can’t stray very far from a bathroom.
Part of the reason is the need to present a well-filled bladder each day. (Read the last article to learn why.) The human bladder holds 10-20 ounces: you would think that 20 ounces of water, strategically consumed, would do the trick, and maybe it does, but I haven’t yet found the optimum time to get away with such a modest sip.
My handy guide to RT says that I should be drinking eight glasses (a half gallon) of water a day, but how much of that should I drink before the treatments, and when? If I start too soon, then I’m uncomfortable long before I arrive at the hospital; if I start too late, then there is a delay while we all wait for the water to do its job.
(A friend calls this delay “The Walk of Shame”–you don’t think they let you sit there on the machine while other patients are waiting, do you? No–you go back to the waiting room with your water bottle while all the men in particular look at you with pitying glances.)
And how much is the right amount, anyway? Several mornings, I drank my entire half gallon before the morning appointment. That inflates the bladder just fine, thank you; but then it fills again immediately after I leave the hospital rest room, before I even get to the car. The ride home can become pretty uncomfortable. And in this situation–where I’ve virtually poisoned myself with forced hydration–I’ll have bathroom trips on the half hour for the next several hours. (Another side effect of RT is that it irritates the bladder, so the patient feels the need for a bathroom more frequently anyway.) So I’m not much use through the afternoon.
I haven’t found the right formula yet: it looks like 24 ounces begun about 75 minutes before the treatment is sufficient, as long as I was reasonably well-hydrated at the beginning; which I may not always be. One of the side effects of RT is diarrhea, and that causes some dehydration. The other day my first quart or two were basically absorbed into my dehydrated tissues, not even going into the all-important bladder. By the time I drank another pint or two, I thought my stomach would explode.
And there are some fine points: the effects of food in the stomach (I like a breakfast), caffeinated beverages (no coffee or tea in the morning for me), alcohol (I still imbibe a bit, but that’s in the evening).
I’m a bit embarrassed to obsess quite so much about a body function, but that’s the way things are at this point in the course of treatment. Today, with 17 of the 28 treatments in, I’m hoping that the side effects don’t get worse; but even if they do, this is all inconvenient but survivable. And in a blood test on Monday, my PSA score was .48, my lowest ever, which indicates that the cancer is feeling it even more than I am. I’ll rest up over the weekend and continue the attack on Monday morning.
Thursday, May 30, 2019 – IMRT Begins
Time to kill the tumor! After months of learning, considering, deciding, planning, and preparing, I started my course of radiation therapy today with the first of 28 sessions.
The focus of my last post, on May 13, was the “treatment planning scan,” where they made a positioning mold and gave me a couple of tattoo marks to align all my parts for the radiation treatments. Yesterday we had a “dry run,” where they used the mold and my tattoos to align me and took another CT scan to verify that everything was where it’s supposed to be. And today they finally added the radiation.
I’ve heard a couple of sentences now that I never expected to hear. Because I’m supposed to load up on water before the sessions (see May 13 for why), the beginning question at each visit is, “How’s your bladder?” After seeing yesterday’s CT scans, Cassie said, “Your bladder looks great!” I felt like a particularly clever child who had just done something special. I can’t afford to be choosy about compliments, so now I’ve concluded that my bladder is one of my best features. I may get pictures.
It is interesting to see the setup. I’m lying down on a table, with lasers above and on the sides to line up my tattoos. Then the equipment moves into position around me, rotating for both the CT scan and the treatment. At times a “don’t sit up” icon rotates to a position about six inches above my nose, which seems oddly hilarious. There seems to be a short pause between the scan and the treatment, while I suppose they’re looking to see if any adjustments are needed from the day before. Or maybe they’re just admiring my bladder.
This newest form of External Beam Radiation Therapy (EBRT) is called “Intensity-Modulated Radiation Therapy” (IMRT). These machines can fine-tune the radiation, with different sites getting different amounts so that “higher and more effective radiation doses can safely be delivered . . . with fewer side effects compared with conventional radiotherapy techniques.” (I’m for that.) During the scanning phase, the rotation is smooth; but as the machine delivers the radiation, the speed of that rotation changes, I presume as part of that modulation. As I understand it, the targeting can change week by week and maybe day by day as the tumor shrinks: they want to attack where the tumor is, not where it was.
The visit takes about fifteen minutes. The difference in sensation between actual radiation therapy and the previous practices is . . . nothing. They tell me that I may experience some fatigue as the treatments progress, and there are some side effects to watch out for, but they’re not expected to appear – if they do – for a couple of weeks. As for sensation during the treatment, none.
So we’ve started on this stage of the adventure.
Monday, May 13, 2019 – Planning and Scanning
Lynn and I headed to UH’s Seidman Cancer Center today for the final step before radiation therapy begins. We met with Dr. Dorth and some of the other staff in Radiation Oncology for the “treatment planning scan.”
But first, some water. They like these scans to take place with a full bladder, because that separates the various structures and gives the operators a clearer shot of the parts they’re going to irradiate. This will become a regular feature as I start the radiation treatments: I’ll need to drink enough water before each treatment to make me uncomfortable.
While the water did its work, we had time for a progress report and a decision. How am I feeling in early stages of ADT? I have been able to identify some lack of energy, an occasional hot flash, and some breast swelling and tenderness. The swelling and tenderness may result more from the Casodex that I took before I got the Trelstar injection six weeks ago; so perhaps that side effect will go away as the Casodex clears from my system.
(My male friends are always startled when I report these side effects, but most of my female friends seem to have experienced these symptoms, and they generally say something like, “Ah, now you know what it’s like!”)
Meanwhile, the ADT is doing what it’s supposed to: starving and shrinking the tumor. In a mid-April blood test, my PSA was down to 1.5 from the 7.7 in October that triggered the original referral. But by itself, ADT won’t kill the cancer: that task belongs to the radiation therapy.
I needed to make a decision about just what they’re going to irradiate. There are basically two approaches: irradiating only the prostate and seminal vesicles, or irradiating the lymph nodes as well. I’ve opted for the full-pelvis treatment. This has slightly higher risks of some uncomfortable side effects, mostly while the treatments are going on and for a few weeks after. But if there are some cancer cells lurking in the neighborhood, this is more likely to get them; and that is, after all, the point.
This conversation lasted long enough that I was ready to get onto one of the machines they use for the treatments. They positioned me the way I’ll be for the treatments, and created a mold of my torso so that I can get into the exact same position for the treatments. And now I now have tattoos! Two tiny dots were placed on my hipbones to help them position me when the treatments start. But no radiation today: this was just a planning session. After they’ve fine-tuned the plan they’ll be in touch next week to schedule the sessions, which will probably start the week after.
One nice bit of news I got was that they think I will only need about half the radiation sessions they originally thought. Evidently they have variable-beam radiation machines, and these are able to tailor the strength of the radiation among my various bits–really blast the tumor itself while backing off a bit on the other parts. The machine makes takes a new CT scan at each treatment, so the dosage and placement can be adjusted–daily if necessary–throughout the treatment phase. I won’t mind shortening the process!
So that’s it for a couple of weeks, when we should start lighting up the tumor.
Wednesday, March 27, 2019 –OK, Now We’re Getting Serious
My treatment took a major step today with the beginning of Androgen Deprivation Therapy (ADT). Lynn and I met with Sue Flick, the Certified Nurse Practitioner on UH’s prostate cancer team, and I received an injection of Trelstar (the American brand name for Triptorelin).
This is a serious step in the therapy, beginning what amounts essentially to two years of chemical castration. As with the Casodex I took for the past couple of months, the purpose is to starve the tumor, which loves testosterone. This is called neoadjuvant therapy: by itself it won’t kill the cancer, but its purpose is to shrink the tumor and make it easier for radiation therapy to kill it.
So, what’s next? Evidently I should be alert for side effects. The most common is hot flashes, but more serious would be osteoporosis; so I should start taking a calcium supplement. And, you know, diet and exercise.
The schedule is starting to fall into place. I’ll have a routine appointment with my primary physician, Dr. Friedman, in April; prepare for radiation therapy in mid-May and start the therapy itself just after Memorial Day; and see Sue again in late June.
During the weeks of the radiation therapy itself (roughly, June and July), I’ll see Dr. Dorth every week. The Trelstar shots will continue every six months for two years, and through all this I’ll be getting blood tests for PSA and testosterone levels every few months.
In this situation you want to be around people who are positive without sugar-coating the situation. Sue is good at that: patient, pleasant, and knowledgeable. She did a great job of answering our questions.
On a more personal note: Thanks to all the readers of this journal for all your concern, encouragement, and prayers; those things have really meant a lot. Most of you know that I have always valued self-reliance; I’m learning now that not all things are in my control and I’m going to have to rely on some others to help out. Thanks for that.
Sunday, March 17, 2019 – Distracted at the Piano
Playing a mass imperfectly today turned out to be a good learning experience.
Although the music leader’s main job is to play the instrument (in this case, a piano), there’s also a lot of what you might call “executive” activity. In addition to playing, I’m leading the singers from the keyboard, and I’m singing as I play. In Sunday’s mass, we were juggling five books to present sixteen pieces of music. And for some reason, I kept having the wrong piece ready, or none at all, and I kept having to scramble to get the right item up and ready to play. It was irritating and frustrating.
Afterward, I reflected that my mind had been constantly distracted; I wasn’t concentrating well. Now I realize that since my diagnosis, my concentration has been shot to hell, with constant thoughts about treatment choices and “what-ifs.”
So now that I recognize the problem, I think I’ll be able to deal with it, watching for signs that I’m distracted so that I can concentrate on the work at hand.
Friday, March 8, 2019 – Decision
Eleven days after our meeting with radiation oncologist Dr. Dorth, today Lynn and met with Dr. Ponsky, my urologist/prostate oncologist/surgeon. We had set this appointment up five weeks ago, when I officially got the expected diagnosis of prostate cancer.
Although we had a good conversation last last week with radiation oncologist Dr. Dorth, we had a lot to talk about today with Dr. Ponsky. The biggest question concerned the clinical trial I have been invited to join: did it make sense to stop taking Casodex for a month to establish a new baseline PSA score? I’m learning that all these experts want to leave the choices in your hands, so you need to listen very carefully to what is and isn’t being said: without saying that it was a bad idea, Ponsky said that he could understand why I thought that might be a bad idea.
One of the reasons for my interest in the clinical trial was to get the wider-range radiation therapy; but Dr. Ponsky indicated that I can probably get that without joining the trial, and thus avoid what I’ve been calling the “Casodex holiday.” So that’s my plan: I’ll call Dr. Dorth’s office on Monday and give her the news.
Evidently we will still have lots of choices to make about the radiation therapy: whether to have simply nine weeks of External Beam Radiation Therapy (EBRT), or implantation of radioactive “seeds” (brachytheraphy) with a shortened routine of EBRT, or something called proton therapy, and other options. That decision can be saved for a few weeks.
We had already set a tentative date of Tuesday, March 27, for the LHRH agonist/antagonist shot that will kick the hormone therapy into high gear. That’s almost three weeks away; if we start the radiation setup about six weeks after that, we are probably looking at actual radiation treatments running from late May into late July.
I asked Dr. Ponsky (who would perform the prostate surgery if I opted for it) about the overall survival rates for hormones-plus-radiation versus surgery; he said they are the same. It’s generally agreed that surgery has greater risks of early side effects, while radiation can have some later side effects. I still think I’ll go with the hormone-plus-radiation treatments, and he didn’t push back against that choice.
Wednesday, February 27, 2019 –
My Cancer Team
They say that it takes a village to raise a child, and evidently it takes a small village to cure cancer. At this time, the main players in my medical team are in place. There are plenty of other people we’re meeting along the way: RNs and PAs and technicians. But here are the “big four” for now.
- Molly Friedman, DO: our Primary Care Physician since late 2017; we started seeing her after our longtime PCP, Dr. Bob Tupa, retired earlier that year. Her office is at the University Hospitals Twinsburg Health Center.
- Lee Ponsky, MD: the urologist Dr. Molly referred me to. We see him at the University Hospitals Brainard Medical Building. He is a prostate oncologist and surgeon as well as a urologist. You can read about him at https://www.leeponskymd.com/about-lee-ponsky/.
- Christine Mix, RN: my oncology nurse navigator. She’s available by phone and email; we may never meet face-to-face. But she’s helpful and friendly, and can cut through organizational red tape. She was the one who moved up the report time for my bone scan results.
- Jennifer Dorth, MD: the radiation oncologist who will be handling the hormone therapy and radiation treatments that will be part of my cure. We see her at the University Hospitals Seidman Cancer Center in University Circle. You can meet her at https://www.uhhospitals.org/doctors/Dorth-Jennifer-1518132463.
All of the people we’ve met have been very kind, and they certainly seem to know their stuff. They have exuded confidence that we will beat this thing.
With so many players, I asked on Monday who would be coordinating my care. Basically, that’s the two oncologists, Ponsky and Dorth. They operate as a team, consulting once a week. I asked whether, if I told something to one, I was effectively telling them both. Dr. Dorth said yes.
Two of the doctors are female. Women patients have been dealing with the reverse of this situation for centuries. I wondered how I’d feel about that, since this is a very personal sort of cancer. But I’m finding that it turns out not to be a problem.
Monday, February 25, 2019 –
Seidman Cancer Center
Heather was able to join Lynn and me today as we went to the Seidman Cancer Center for my first consultation with the radiation oncologist. I pointed out to the staff that I had an entourage!
My understanding of the scheduling turned out to be backwards.
- I had thought that we would be scheduling radiation treatments today. Not so! First, I will get a shot of LHRH agonists/antagonists, which will work with the Casodex I’m already taking to starve the cancer and shrink the prostate. Those shots will be repeated, perhaps every six weeks, for some time.
- Setting up and programming the radiation takes about two weeks and it doesn’t start until about six weeks after that first shot. Then the radiation treatments run about nine weeks, five days a week.
- Now things get trickier.
- There is some question as to whether it’s best to irradiate just the prostate or the entire pelvis. Normally, the radiation would be focused just on the prostate. UH is participating in a clinical trial to find out, and I’m eligible to participate in the trial; it may make available a higher level of care than the standard.
- But the clinical trial uses PSA scores to track effectiveness, and my PSA score has probably been affected by the Casodex I’m taking. For me to participate in the trial, I have to stop taking the Casodex and delay the LHRH shot for a month so that I’ll have a more realistic PSA.
- So the question is whether the possibility of an improved treatment is worth delaying hormone therapy for a month. This is a complicated issue, and I’m to talk with my urologist about it on March 8 before deciding.
- If I don’t join the trial, I’ll keep taking Casodex and probably get the first hormone shot the week of March 11. Radiation setup would start about the beginning of May, and radiation treatments run from about mid-May through mid-July.
- If I do join the trial, I’ll stop taking Casodex and delay the first hormone shot until mid-April. Radiation setup would start in early June and the treatments would run from mid-June through mid-August.
Sunday, February 17, 2019 –
Telling the Family
We could have told our kids about this as early as Wednesday, when we found out the results of the bone scans; but that presented some practical obstacles. Heather and her family live in Twinsburg, about fifteen minutes from our home; but Noël lives in Las Vegas, and Rob and his wife Elizabeth (a nurse) live in Philadelphia.
Ideally we wanted to tell all of them at the same time, and in person. But it was pretty clear that wasn’t going to happen. We could have said, “Cancel everything and get here for an important announcement,” but that seemed inhumane and overly dramatic. It didn’t seem right to have a big buildup that would increase anxiety: best to lead up to it as a routine conversation.
What eventually happened is that while Heather stopped at the house today, we Facetimed Noël, and we dropped the bomb then on both of them and told them what we know now. It wasn’t an easy conversation, but it helped that all four of us were able to see each other.
We talked with Rob in a separate conversation. Prostate cancer isn’t inherited, but there is a genetic component, and it runs male-to-male. My own father died of other causes at the age of 43, before any prostate cancer would have developed, so we don’t know whether I have a family history of the disease; but Rob does now, so the message to him was a bit different, and more specific. Now he knows what he needs to know, and we can begin informing others around us about what’s going on.
Rolling out the information has been more stressful than dealing with the disease and its implications. Treating the disease involves action, but our belief that there was a right way to do the notifications had forced us toward inaction, and paralysis is usually more stressful than action. We are glad to have told the family, and now we can get started telling everybody else.
Wednesday, February 13, 2019 –
How We Got Here
It’s hard to believe it today, but this journey began nearly four months ago. In a routine checkup on Thursday, October 18, 2018, I learned that my blood test the previous week had scored a PSA number of 7.77. (Generally, over 4 is regarded as problematic.) Our primary care physician referred me to a urologist, and reassured me that although I needed to be checked out I shouldn’t be excessively worried; any number of things can raise a PSA score. No rush!
I made an appointment with the urologist for the next available opportunity, which wasn’t for about six weeks. I wasn’t excessively worried, both because worry is unproductive and because the odds seemed to be in my favor. Lynn and I decided that there was no point in telling the kids because at this point nothing we could tell them would serve any purpose other than raising their anxiety levels. Ours were already high enough.
The urology consultation took place on Thursday, December 6. The urologist asked a lot of questions about my history, reviewed my chart, and ordered an MRI as the next step. I had a choice: to wait until those results were in before deciding whether to get a prostate biopsy, or to schedule the biopsy then. That’s what I did, and we now know that was the right call.
I had the MRI on Wednesday, January 9, 2019. Nine days later, at the biopsy appointment, the urologist said that it was a good thing I had scheduled this next step, because the MRI had definitely shown some prostate enlargement—not necessarily cancerous, but worth checking. I made an appointment for a followup consultation in two weeks.
University Hospitals has an online patient portal, and many of my exams show up there. Within a day or so after the biopsy, I saw those MRI results, which indicated a “lesion . . . compatible with a PI-RADS 5 category and stage IIIA.” I looked up PI-RADS category 5 and stage IIIA, which it turns out are not things you want to hear, and prepared to receive bad news from the biopsy.
That came at the consultation on Friday, February 1. This was Lynn’s first time attending one of these appointments, so she heard the news as I heard it. The biopsy showed a large tumor in the prostate. The biopsy reports that my cancer has Gleason scores of 7 on the left and 9 on the right. Since Gleason scores only go up to 10, those aren’t particularly good numbers. We arranged a whole-body scan to determine whether the cancer had spread to the bones and heard some of the options for treatment.
Prostate cancer treatments typically involve radiation, hormone blockers, and/or surgery; generally not chemotherapy. On Monday, February 4, weeks before we would develop a treatment plan, I started taking bicalutamide (generic Casodex) every day. Later hormone therapy will block the actual production of the testosterone that feeds the cancer. Casodex simply blocks it from being absorbed by the prostate, so it’s an easy way to begin starving the cancer. That same day, I scheduled a radiation oncology appointment for Monday, February 25.
I got the bone scan on Monday, February 11, and settled in for a two-week wait to get the results; mercifully, that wait was to be cut short. Today I got an introductory call from my “Oncology Nurse Navigator,” who will be another resource person I can contact as we go through this process. When I asked whether it was possible to get my bone scan results before the oncology consultation, she looked into it and called me back with the first good news in this adventure: there’s no cancer in my bones.
We had wanted to delay telling the kids until we knew something definite, and now we have it: I have prostate cancer, and it hasn’t spread to the bones. Now we are ready to tell the kids.