Living with very advanced forms of prostate cancer

A new article in the journal Supportive Care in Cancer makes the point that informational needs and resources for men dealing with metastatic, castration-resistant prostate cancer continue to be relatively poor — a fact that we would not disagree with.

Having stated that, we should be clear that the abstract of this paper by Jenkins and Fallowfield starts with the inaccurate statement that

The majority of men treated for prostate cancer will eventually develop castrate-resistant disease (CRPC) with metastases (mCRPC).

This appears to be either a mistake by the authors or a mistake by the publisher. The vast majority of men treated for prostate cancer absolutely do not progress to having CRPC and or mCRPC … but it is likely that the majority of men in the UK (where the authors are based) who are diagnosed with progressive prostate cancer or prostate cancer that requires androgen deprivation therapy (ADT) will indeed go on to have CRPC and/or mCRPC.

As the authors accurately state,

Current ASCO guidelines for survivors of prostate cancer recommend that an individual’s information needs at all stages of disease are assessed and that patients are provided with or referred to the appropriate sources for information and support.

The authors are also correct in stating that

… there is still a lack of good-quality congruent information easily accessible specifically for men with mCRPC and insufficient data regarding the risks, harms, and benefits of different management plans.

As we continue to make progress in the treatment of men with progressive forms of prostate cancer using new forms of therapy, we have failed (so far) to support that medical care with the other essential forms of care that can help such patients to maintain an appropriate quality of life.

Given the likelihood of a continuing increase in the numbers of men living with progressive forms of prostate cancer as the Baby Boomers all reach their late 60s and early 70s, this failure to meet the needs of men with advanced forms of prostate cancer is becoming more and more evident on an almost annual basis.

9 Responses

  1. It is so very difficult to live with advanced metastatic prostate cancer. … It is unending stress and so many medications to try to keep ourselves functioning more or less normally. It’s being constantly reminded of our own mortality, hanging over our heads every waking moment, with no relief.

    I don’t know how long-term survivors manage to deal with it. I’ve only been fighting it for almost 4 years (beginning with a PSA of 744), so I started out well advanced, with bone and lymph gland metastases.

    At times it’s almost intolerable, feeling so very ill — like torture. It’s not just pain; the feeling ill is worse than pain. At least the pain can be mostly managed.

  2. My gosh — amazing how this comes up here this week Sitemaster. I have already written three e-mails this morning addressing exactly this issue.

    On Tuesday I sadly attended a memorial for another mentee who became a good friend over way too short a period of time and died last week … 10 months after diagnosis at 53 with three very young children.

    All too distressingly, we discovered way too late that he had an actionable gene, MLH1, not that common in prostate cancer. By the time this was determined, together with high MSI (multi-satellite instability), he was too weak to tolerate the ideal drug, pembroluzimab (Keytruda) and died the day after his first infusion.

    We had been asking his doctor for sequencing as far back as January; had it been obtained more timely, perhaps he would have been strong enough to tolerate immunotherapy. There are no guarantees it would have worked, but he would have had a chance!

    This is the third man for whom I have advocated since December who has died after untimely ordering of gene sequencing. The other two, one prostate, one lung — did not even live to see their results.

    There needs to be a clinical protocol addressing the ordering of genome sequencing — especially now when it is available and affordable commercially from labs with excellent panels. Amongst other issues, It should address:

    — when to order
    — where to order
    — timing of availability of results
    — what to do if a solid tumor biopsy is unusable
    — how and who best to interpret results

    We all recognize personalized medicine is truly on the cutting edge. At the same time, it can, does, and will save lives; we must be sure it is appropriately implemented. I plan to approach the institution where this happened before very long with a proposal to develop guidelines to clinicians for genome sequencing.

    Onward and upwards

  3. Rick:

    I have a nasty suspicion that there’s another step you need to insert, which is this one:

    — Check whether insurance will cover genome sequencing

  4. Hi.

    I have found it very difficult to impossible to truly understand my disease and still have not been able to find a concise source of credible information. The Sitemaster has done about the best job of anyone; however, the further the disease progresses the fuzzier things become for the patient. I also feel that sometimes information about tests and treatments touted on the internet are not always available or applicable to individual patients. I believe this adds to the confusion and anxiety for some patients.

    I do not do well in group support settings so I found introspection seems to work for me. This has morphed into an extremely personal journey which is providing me insightful experience into places heretofore hidden to me. I strive to challenge myself to stay active and try my hardest not to negatively impact my friends and family. I believe that I have been lucky in that my pain and fatigue issues are not so bad as some others. This has been due in no small part to my oncologist, who found an oral chemotherapy agent that has helped slow down the disease progression and my pain management doctor who provided nerve blocks to reduce some severe pain in my arms.

    I am not saying it is fun and I would much rather not be here.

    I applaud Rick for his good works and agree with the genetic testing.

    I agree that we will likely see more men living longer with late stage disease and this will likely create more issues for these men. I wish I had some good answers, unfortunately I don’t.

    Thanks to our Sitemaster for providing a place for us to come and receive credible information in an easy to read format.

    Bill Manning

  5. I left out insurance because does not appear to be a major issue …. or if it is, there are easy and effective workarounds.

    Medicare does cover sequencing, and many of the the private carriers appear to as well. Moreover, some of the companies, in particular Foundation Medicine, have changed their business model to back-charge the pharmaceutical companies rather than the patient. Their web site actually states they will provide sequencing regardless of financial situation … and they do!

  6. It seems obvious to me that the mass amounts of R&D data often confuse and frustrate patients who are metastatic and castrate resistant.

    The fact that I have a chemistry background, supplemented by college courses in microbiology, allows me to wade through the pages of currently applied therapies. On the other hand, the “lay” person tends to use blind faith with his oncologists, or urologist, in following the respective treatment therapies.

    What is needed is a new approach which focuses on “living with the disease”, and attempting to perpetuate, or sustain, an acceptable quality of life. Clearly there is no silver bullet which can cure the disease, but there are specific therapies which do allow many to live on for years utilizing this approach. I for one have served as my own advocate, and have been able to enjoy a current 16 years since diagnosed in 2000. My quality of life has been a net “good,” in spite of many ongoing challenges.

    In summary then, I wish that someone, or some institution, would focus on this concept of living with the disease, and to stimulate and encourage patients respectively, to continue the battle with optimism and hope.

  7. Dear David:

    I have been thinking about this for years … and as yet I have still not found myself able to come up with a really good way to do what you are suggesting, largely because what works for some patients simply doesn’t work for others.

    Just as one example, using certain types of intermittent ADT is extremely effective for some patients but appears to have no value at all for others, and we have no idea how to identify these patients up front.

    One could develop a relatively simple list of what might be described as “strategic options” for men with progressive disease, but the best order in which to use those options is still one of the “great unknowns”.

    Do you have any more specific ideas?

  8. Thanks, and effectiveness of intermittent ADT

    Thanks to all who have responded so thoughtfully, especially Sitemaster.

    Regarding the effectiveness of intermittent ADT, I believe there is a way to both enhance responses and figure out who will do well long-term. Sitemaster raised this concern in the post of August 5, 2016 at 11:34 am: ” … because what works for some patients simply doesn’t work for others.

    Just as one example, using certain types of intermittent ADT is extremely effective for some patients but appears to have no value at all for others, and we have no idea how to identify these patients up front.”

    Based mainly on a large Japanese retrospective study of different types of ADT, as well as on published studies from at least two clinics using ADT in many advanced patients plus informal accounts and my own experience as a patient, I’m convinced that multi-agent ADT works better for most of us. The Scholz, Lam, Strum team in particular has published about this in leading journals, based on records in their practice. One paper documents their conclusion that men need to reach a PSA nadir of less than 0.05 on ADT to have a good chance of long-term success with intermittent ADT. Their experience is that many of us can reach that nadir (as I did, despite a high-risk case). They believe, supported by research from Memorial Sloan-Kettering Cancer Center (and perhaps others), that median success of ADT prior to castrate resistance falls into two patterns, either about 10 years or indefinitely long, which is better of course.

    The flip side is that they are convinced men not achieving that nadir of less than 0.05 need to get involved with other tactics, probably not including intermittent ADT and with other drugs or non-drug treatments.

    I am not aware of any clinical trial support for these views.

  9. I would agree with Jim that ADT is unlikely to work very well for most patients unless their PSA drops to < 0.1 ng/ml during the first cycle on the ADT.

    I would also agree with Jim that there is no clinical trial data supporting any of this. … Trials of they type of intermittent therapy Jim believes in have never been conducted, and they probably won't ever be conducted.

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