I’m writing to see if anyone has used a particular type of medical institution and shipping service to have their blood drawn in one state (e.g., Florida) and then express shipped to a hospital in another state (e.g., New York) so that the test results would be comparable. My PSA (at .083 with a doubling time of approximately 18.8 months as of February 2020 – Gleason Score = 3+4) has been slowly on the rise for the past two years (RP back in 12/15), and I need the data from each test to be comparable so that I can continue to track PSA with a somewhat reasonable level of confidence.
Any advice would be greatly appreciated.
Thanks!
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musi
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You raise an interesting point. Let me give you a more detailed overview, with a better idea of the dilemma that I'm facing, and it would be great to hear additional thoughts from you (especially), and also from others. I apologize in advance for being very long winded.
I should mention that I have negative margins, which means that my PSA is nearly 100% certain to surpass the somewhat arbitrary .2 definition of cancer that is mentioned most often as a sign of recurrence.
I had been planning to start treatment once my PSA hit .1 with Dr. Zelefsky of MSKCC, in consultation with oncologists from Mt Sinai and U of Miami. (They've all been find with me reaching out for second opinions, and they all know or know of each other.)
Regarding treatment opinions:
> Dr. Michael Zelefsky (MSKCC Radiation - NYC) is strongly urging me to wait for treatment till PSA is at or around .2 and to also include pelvic lymph nodes in the treatment at that time. He is fearful that the spread may already be in the lymph nodes, though he holds out the notion that I really can wait to have the treatment. Regardless, he has made clear that he'll do whatever I ultimately decide is best.
> Dr. Alan Pollack (U Miami Radiation) is completing his writing of a groundbreaking study supporting the addition of pelvic lymph nodes to treatment. But, NOT in my particular case. He wants me to begin radiation only to prostate bed + 4 mos of ADT when I get to about .1. He would be happy to get started a little sooner, but he doesn't see that as being necessary. Based on his research and my overall profile, he believes that there is a good chance that the cancer is not yet in the pelvic bed. That important perspective combined with a concern that pelvic lymph node radiation may have side effects that will significantly impact my life (perhaps because I'm 55, but very athletic, up to now have traveled the world constantly since RP, and exercise 2 to 2 1/2 hours nearly every day) lead him away from including the PN radiation that he recommends for others.
> Dr. Richard Stock (Mt Sinai Radiation - NYC) wanted me to have radiation to the pelvic bed at the end of 2018. Though as you can see (in my PSA scores below), well over a year later, my PSA hasn't moved up much since that time. Stock is particularly fearful of the side effects of radiation to the lymph nodes -- at least in my case.
All of my radiation oncologists are vastly experienced and world class researchers, and they all find the continual up and down dance of my PSA results to be odd, but as my oncologist of the past five years, (Dr. Bobby Liaw of Beth Israel-Mt Sinai NYC) points out, when the PSA is below .1, a very slight uptick up or down may or may not be very meaningful.
Having said that, I know the research that you're looking at regarding the three PSA increases. I'm in a bit of a bind though since I can't go back to NYC to have treatment at MSKCC because (1) my highly decimated neighborhood there is being decimated by Covid-19 and (2) I'm not willing to take 40+ trips on mass transit to be treated this spring, summer, or fall.
I can make it to U Miami (in Miami, Florida), but it is so far from my place in South Florida, that I can't see doing it for 40 days of treatment (Pollack uses fewer fractions of radiation than my NYC oncologists). My other option is to visit Pollack a small number of times and have my radiation done at U of Miami in Deerfield Beach (which is actually not near Miami, but close to me. Pollack actually suggested that prior to the Covid-19 outbreak. However, my concern is that to my knowledge, there is not a lot of radiation performed on prostate cancer at that location (years ago, based on research, I made a conscious decision to only be treated by those who are extremely experienced in dealing with prostate cancer), and I have suffered horrific medical treatment and advice from a range of doctors in my local area. (Hence my reliance has been on my NYC docs, who have been consistently outstanding.) In years of living in South Florida, I've only gotten excellent treatment at the Miami branch of U. Miami.
This has all led me back to thinking that maybe I should reconsider Dr. Zelefsky's recommendation of waiting for treatment till my PSA is at or around .2 and then add the pelvic radiation. Based on my doubling time, we "might" have a vaccine or at least a reasonable course of treatment for Covid-19 in the U.S. by that point, allowing me to return to NYC. I'm not keen on waiting that long or adding pelvic radiation, but I'm considering it as my back-up plan.
BTW, here are my PSA numbers following RP in December 2015. PSA was undetectable until the summer of 2017, which led us to the ultrasensitive PSA tests beginning in 2018.
1/22/2018 PSA=.03 ng/ml
6/4/2018 PSA=.04 ng/ml
8/1/2018 PSA=.04 ng/ml
10/22/2018 PSA=.06 ng/ml
12/17/2018 PSA= 071 ng/ml
3/26/2019 PSA= .066ng/ml
6/7/2019 PSA=.061
9/3/2019 PSA=.075
10/29/2019 PSA= .089
2/3/2020 PSA= .083
Thanks for any additional advice that you and others can provide. And again, sorry for being so long winded.
Are side effects that much more extreme when lymph nodes are targeted? I’m starting RT in a couple of weeks to include LN. In my case nodes were not taken during surgery and since my post surgery pathology was worse than anticipated, RO is treating the nodes. That said, I wasn’t aware that carried a higher risk of side effects.
BTW -- I should mention that I seem to have two accounts because I seem to have signed up with two different email addresses, and I sometimes get a bit confused as to which one I'm signing into at times. But, I am the original sender of the question and the sender of the follow-up message below.
Is it the radiation you fear? Everyone responds differently to any Pca treatment. I experience some fatigue, but it did not prevent me from continuing to work (I was still working back in 1999.)
Hi there. Stepping back for a moment, I would actually have the treatment at or around .1 as previously planned, but I think it's really the pandemic that is the last element that is holding me back. See my latest response to Tall.
When did you get those opinions? As you seem to be aware, 0.2 is no longer the benchmark. Things have changed because of the presentation of data from the RADICALS randomized clinical trial in October 2019. It found that 3 consecutive uPSA rises or a PSA of 0.1 is as good as immediate (adjuvant) radiation. While you haven't yet had 3 consecutive rises, your PSA is approaching 0.1 (PSADT is not defined for PSAs below 0.1):
Can you safely wait for your PSA to reach 0.2? Who knows?
Alan Pollack was lead investigator on the SPPORT RCT that found that salvage whole pelvic radiation is beneficial for men with PSA above 0.2, but not at your PSA:
I'm surprised he is recommending even 4 months of ADT in your case because based on what he presented, neither whole pelvic radiation nor ADT was beneficial for low PSA (≤0.2). But he has seen the detailed data, which hasn't yet been published. In a way, there is a benefit because the ADT means you can delay radiation during the covid-19 crisis.
Another thing to consider during the crisis is getting your salvage radiation hypofractionated- more concentrated treatment in just 20 fractions. This is a recent recommendation of a panel of international ROs:
I hope you will consider having the salvage radiation done locally. You seem to misunderstand the role the RO plays in radiation therapy. His role is limited to planning. His plan is input into a computer that runs the linac. The actual daily application of the radiation is supervised by technicians - the RO doesn't even show up for that. So there is no risk for you to having it done at a more convenient location - Dr Pollack will still do all the planning.
As always, you are very thorough in your response. I just want to address a few points that you raised:
> Dr. Zelefsky gave his opinion in February of 2020. Dr. Pollack gave his the week before, in January of 2020. Dr. Stock's opinion is from 2019.
> Dr. Pollack did mention his finding regarding ADT, but as with others on my team, he explained that he wants each treatment to fit the patient, and he felt the four months of ADT was warranted in my case. (I will press him on that just a
bit when we meet again.)
> I understand the role the RO plays in radiation therapy. However, in the explanation of treatment that's been explained by both MSKCC and U Miami, it was stressed how diligent the technicians are in ensuring that your bladder is full and your bowels are empty before treatment, and how they will not hesitate to delay treatment by 30 or 60 minutes until those parameters are met. From my experience in my part of Florida, I've found so many health care professionals to be flat out uncaring and reckless. That is what worries me about the local radiation treatment.
> There is an added concern that I should mention. To protect myself from the current virus outbreak, I've not set foot into any public indoor facility since March 12th, and due to a few pre-existing conditions, I'm reluctant to do so until doctors know enough about Covid-19 to give patients much more of a fighting chance. Granted, it is true that we may be far, far, far away from a vaccination, but I'm concerned that if I get infected in the near future, there's just too little that doctors know about the disease to give me a decent shot. (I have had a number of friends, relatives and acquaintances get it, suffer -- and even watched on Facebook as some gave updates until they died.)
> I have been wondering about hypofractionation during the pandemic, and I'm really glad that you mentioned it. I had indeed seen the recommendation regarding that treatment that you cite, and I believe that I had also read about one or more salvage trials which had, I think 26 (rather than 20 or so fractions of this treatment). I am also a little worried that all the data is not yet in on hypofractionation as it applies to salvage radiation. (Dr. Pollack is only recommending 34 fractions of typical radiation, one week less than MSKCC and Mt Sinai.)
As one who is familiar with the studies that you are citing and reads your comments all the time, I really appreciate the thoughtfulness of your responses, as well as your depth and breadth of knowledge regarding prostate cancer. I am preparing to set up a round of virtual meetings with my oncologists and further consider the option of having treatment (including the possibility of hypofractionated radiation) sooner, rather than later. I'm still not keen on moving forward sooner because of the pandemic, but I'm also not keen on living through the pandemic -- and then suffering and dying afterward because of having made the wrong choice now (or in the coming weeks / months). I just hope I make the decision that turns out to be best for me. I couldn't tell you which way I'm going to go at this point, but thank you for walking through all of this with me.
You are right that the radiation tech's job is to tell you if your bladder is full, or if you have to take a shit. They can screw that up as easily in a big hospital or in a local facility. You can easily assure yourself that they do their job by simply asking at the start of each session - "is my bladder full enough?" "Is my rectum empty enough?"
As for the degree of hypofractionation, you are right that the original study at the University of Wisconsin used a 26 fx schedule. More recently, a Sunnybrook trial used 17 treatments. It had excellent effectiveness and seemed to have about the same toxicity.
I have reservations about extreme hypofraction of salvage radiation, mostly because fiducials cannot be used for image guidance. UCLA recently acquired a Viewray linac, which may be able to get around my objection because soft tissue landmarks (features in the prostate bed) can potentially be used for image guidance. We will have to see if it's safe.
Thank you very much for this information. I will definitely ask my doctors to look into this.
I have run your PSA numbers.
Your progression during the period covered by 3 decimal PSA values is more favourable than the whole time span. Extrapolating, thus obtained, linear and exponential curves my best estimate is that you will reach the 0.1 mark at the earliest during the first fortnight of November 2020 (exponential) and at the latest arround New Year 2021 (linear).
Either of those scenarios would make me happy. (Granted, I'd have to eventually go forward with the treatment, but the breathing room might allow me to breath a little bit easier). I will be sure to provide an update.
My go had a talk with LabCorp and was left highly comfortable that they do identical assays whichever lab does the ultrasensitive psa, and that they take great pride in doing so.
I think they only have 5 or 6 labs where they do the ultrasensitive psa assays.
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