Met with the oncologist about a week and a half ago to check up on my PSA. As expected, it went up. I am now officially in a category called castration resistant. What this means is I have, on average, less than 2 years to live. There’s nothing quite like knowing this. I felt like I was dead, but yet still alive to cry and grieve. I’m slowly working my way thru this. Staying in the present is the key. Wondering if my next birthday/Xmas will be my last is bad news. It’s hard to stay in the present, but I’m getting better with the help of my wife.
Just got back from the oncologist. I got mixed/negative news. My PSA is up slightly from before. If it’s up three times in a row, it’s an indicator that the hormone treatment is failing. When that happens, on average, survival times are less than two years.
In the lead up to this meeting I was a mess. My scanxiety was thru the roof starting back around June 11, when I got the last injection. I had no appetite and lost 5 pounds (not all bad). My energy levels were ridiculously low. The muscles in my back pulsed into and out of spasm. Going to sleep was hard to come by. I made frequent use of xanax and gin and tonics. The oncologist thinks a lot of this is due to the lupron and casodex and how they affect me. I’m off both of them for two weeks starting today and we revisit their use later. I meet with my GP later this week to try to get control of the anxiety and a better handle on what’s causing my lack of energy (he thinks it might be related to my heart attack).
Originally Posted Tuesday, June 9, 2015
Discussing a Painful Subject: Fear of the Process of Dying
BY MARK SCHOLZ, MD
Many men tell me that they fear the process of dying—suffering and experiencing pain—more than they fear death itself. While I am no fan of pain, as a medical oncologist I have been responsible for the treatment of hundreds of patients with terminal cancer. I have learned that with good communication and proper medical management, pain can almost always be effectively controlled.
However, when reviewing the results of a recent patient survey at a meeting sponsored by Bayer Pharmaceuticals with a number of patient advocates, healthcare experts, and other physicians, it became sadly apparent that many patients are not being managed expertly. The survey indicated that many men with advanced cancer are suffering needlessly, mostly due to a lack of good communication with their doctors.
This survey of 410 men with advanced prostate cancer reported that two-thirds of men are trying to handle their pain by ignoring it! One-third of all the men surveyed felt that acknowledging pain made them more fearful, raising anxiety about the possibility that their cancer is progressing. A quarter of the men said, “It was difficult to talk about their pain,” relating that such discussions made them feel weak.
In other words, these men are using a common psychological defense mechanism called “denial.” One thing I have learned from years of experience treating patients is that denial can be a wonderful approach, but only if the situation is totally hopeless. I have observed men who appear to be in denial who are quite happy even when everyone knows that they are dying.
On the other hand, denial is a serious problem if what is being denied, in this case pain, can be fixed or remedied. If men who are in denial fail to discuss pain with their doctors, their access to a solution is blocked.
Using denial can effectively control pain for short periods of time, however, using it on an ongoing basis is psychologically exhausting. Also, while denial might work for the patient, it can’t fool their surrounding loved ones. They see the effects of pain in the patient manifesting as fatigue, depression, inactivity, impatience, insomnia and hopelessness. Ultimately, the caregivers who are not shielded by denial end up suffering even more than the patient.
Cancer patients experience pain from multiple causes, not just their cancer. Invariably, life itself is painful. However, most types of cancer pain can be resolved. The first step is to acknowledge its existence. The second step is to diagnose whether the pain is cancer-related. In the prostate cancer world, cancer-related pain is usually the result of bone metastases. Of course, not all bone pain is from cancer and not all bone metastases cause pain. If a man has pain in one of his bones and a bone scan shows a metastatic lesion in the exact same area as where the pain is occurring, then the probability is high that the pain is cancer-related.
The third step, once it has been confirmed that the pain is cancer-related, is to undertake the appropriate treatment. How to treat cancer-related pain is a topic big enough for another blog all its own. In my next blog I will also elaborate further on the correct medical approach used to distinguish cancer pain from non-cancer pain.
Someone has said, “Not knowing what to do is the worst kind of suffering.” Helping men find a workable solution for pain not only relieves their pain, but it also releases them and their caregivers from the uncertainty and anxiety that comes from not knowing what to do.
I wanted to bring to your attention three valuable resources related to prostate cancer. The first is a set of results from a survey of men with advanced prostate cancer that involved Bayer Healthcare. It highlights the need to improve communication between doctor and patient, as well as, patient and caregivers. It can be found at
The second two resources are blogs that have timely information about clinical trials, state-of-the-art clinical practice and just good advice. They are
I hope you’ll find them as useful as I do.
A lot has happened in the last three months. I was anxiously awaiting the results of my last PSA test about 6 weeks ago. Prior to that, my PSA had dropped from 50 to 9 to 5. I was hoping for a 2 or maybe even less than 1. I got a 15. Triple my last score. My first thought was that the Lupron has failed, followed closely by absolute fear. My oncologist told me that this outcome didn’t necessarily mean the hormone treatment had failed, because I wasn’t on the hormone treatment as recommended. Up to now I’ve been taking Lupron every other month, due to the depressions it caused me. The last few months, as an experiment, I’ve taken Casodex, another hormone therapy drug, along with the Lupron. That introduced three side effects. The depressions nearly went away, my hot flashes grew much more frequent and severe, and I developed occasionally significant breast tenderness. The depression remediation was a big win, and with it we decided to switch me to a normal hormone therapy regimen – where I’m on it all the time. My oncologist suggested I start taking Black Cohosh herbs in a capsule for the hot flashes. They’re over the counter and even mention on the bottle that they help alleviate hot flashes. They’ve worked out very nicely for me. Instead of 2-4 severe hot flashes a day, I get a moderate hot flash every 3-4 days. On the breast tenderness front, we have to wait and see. He acknowledged this could turn into a serious problem, but so far it’s manageable.
As I was settling in to this new regime, on June 1 I participated in an Advanced Prostate Cancer Virtual Blogger Summit sponsored by Bayer HealthCare (they were even nice enough to provide a webcam for me). In general I learned that men do a poor job recognizing and communicating the signs and symptoms of advanced prostate cancer. For me personally, I realized I’ve been minimizing the problems I’m having with fatigue and anxiety. Over 85% of men with advanced prostate cancer have fatigue issues, so at least I’m in good company.
I sleep 10-12 hours a day and often need to spend a few minutes recovering from taking a shower. On the anxiety front, I routinely find the muscles in my legs, buttocks, and back totally tense up and are hard to move. Some of that may be all the chemicals I’m taking. It’s hard to figure out what’s causing what.
On June 11 I got my next month’s injection of Lupron, as per the typical regimen. What that really meant to me is that on July 14 I would find out if the Lupron has failed.
My anxiety has been through the roof since then. Many nights I’ve had to take anti-anxiety pills to get to sleep. The muscle “lockups” have been more frequent. I’ve had a few bouts of depression, but have been able to fight them off. I have a ready supply of anti-anxiety pills, but I try to use them only when really needed. My docs tell me folks build a tolerance to them; and I don’t want to use that up unless it’s absolutely necessary. Last night I didn’t need them, and I’m going to try going to sleep without them tonight.
Despite all this bad news, my life isn’t that bad. Fifty percent or more of the time I feel pretty good. I’m hoping that once I get resolution on Lupron’s status the anxiety will go down, even if the result is it’s failed. Now if I can just get my legs to relax and go to sleep…
It’s been quite some time since my last post, my apologies. I received mixed news over the last month or so and I reacted to the negative side of the news by not wanting to talk or think about my cancer. What I found out was that a major contributor to my lack of depressions was being on Adderall at the same time. While this might sound like at least neutral news, it isn’t. People usually develop a tolerance to Adderall in a few months, when used for depression, and the effect is already starting to wear off for me. So more depression is on the program, which is depressing in and of itself.
There was good news. My PSA, measured from cycle to cycle has gone from 50 to 9 to 5. The Lupron and Casodex are still clearly working. I continue to be nervous about how long this will last, though. They typically fail 2 years after treatment is started, and I’m at 2.5 years now, more or less. The anxiety before I go in for my PSA test results every other month is near crippling. When the drugs fail, it means I have 2 years left, on average. There is precedent for the drugs lasting much longer in rare cases. My oncologist has a patient who’s been on Casodex alone for 9 years. I’m hoping for a break like that.
For the most part I’m doing OK. The majority of my depressions are mild. I’m still traveling and having fun with my wife and friends. But it feels surreal that all will end fairly abruptly, although that can happen to anyone at any time. It’s just that near certainty that my life will end decades before my actuarial time to die that pushes me to focus on my mortality. We’re all dying by definition, but I really feel as if I’m dying now. Maybe you have to have a terminal illness to understand the difference, but it’s real and it’s scary. In the meantime I just try to stay as upbeat as I can and cope with the depressions as they come.
It seems my fairly well established pattern of Lupron effects fading substantially six weeks after the injection has ended. This last week, week 7, has been one of the worst weeks of my life. Depressions that once started in the afternoon, but could be resolved by taking some Xanax and sleeping it off are mostly gone. Instead I have depressions that start in the early afternoon and torture me until I am finally so exhausted I collapse at night – even then fearing what awaits me when I wake. I am so ready and wiling to die. This isn’t a life.
I suspect many people find it very difficult, if not impossible, to imagine my depression. What could it be like? For me and I suspect most others in my situation, there are 2 elements: the past and the future. The past is the sum collection of everything “wrong” about me mostly from screwed up childhood stuff I incorrectly labeled as proof of my worthlessness – with great help from my parents. The future is the literally true nature of how hopeless things going forward “may be” (but in this state of depression I assume they “will be”).
In fighting the elements of the past, it’s all about convincing myself that those are inappropriate perceptions of a child driven by imperfect parents. I feel as if I’m doing a pretty good job of that. Fighting the future means trying to live in the moment, at least until the moment becomes unbearably painful. In this regard, I’m falling woefully short. I suffer from no direct cancer pain, only these Lupron induced depressions. The depressions produce enormous fears of how bad the pain and hopelessness can and will likely be. Oftentimes it’s hard to imagine that an early death wouldn’t be a more humane result. I find myself praying for a quick death, such as by a brain aneurism or at least something like kidney failure (a very good way to go I’m told).
The doctors all tell me the drugs can control the pain. The things I read in the press don’t jive with this at all. I’ve yet to read even one story where the drugs took away all the patient’s pain, and they talk about a blissful, untroubled period. I guess this could be that they live a horrible life nearly up to the end, have a pain free period, and then die before they recount anything about it.
In the near term I hope somehow, someway to get control of this Lupron depression. In the longer term I fear all my concerns are, in fact, right on target.
Right now the truth is that all I have is week 8. Hopefully, it will be more forgiving.