My computer issues have been sorted, so here’s the full scoop behind my meeting with the medical oncologist (MO) on Tuesday.
The meeting started with a nurse practitioner (NP) which threw me for a bit of a loop and initial disappointment. Because this was my initial contact with the oncology team, we spent a bit of time reviewing my history and how we got here. She did say that she would bring the MO into the discussion once we went through the preliminaries.
The nurse had actually done a pretty thorough job of reviewing my file prior to the meeting, and was familiar with the recent bone scan and PSMA PET scan results. Her take on my situation was that we were somewhat in limbo with no signs of metastases anywhere, and that the path forward wasn’t so clear-cut. (That actually led to a brief discussion on how metastases is defined in the world of prostate cancer. She was of the school that it’s not metastatic until it shows up on scans, while I pressed and suggested that, because the prostate is gone and the cancer is somewhere, it must, by traditional definition, be metastatic.)
Once we were through with the initial screening, the nurse brought in the MO and introduced her to me. I did ask if she specialized in prostate cancer and she does not; she’s more of a general oncologist. She did say, however, that she reviewed my case with a genitourinary oncologist at the University of California San Diego (UCSD) the day before our meeting. That was a good to know (but not the same as having a seasoned prostate MO in the room).
At that point, the three of us started going down my checklist of questions.
We talked about whether there was value in delaying the start of any treatment until my PSA rose to a level where a scan would detect the location. In the preliminary screening, the NP seemed to be inclined to start the ADT before another PSMA PET scan, and she was a little surprised that the MO said we should do another scan in six months. The MO said that the scan may reveal lesions that could be spot radiated as a treatment option.
That led to me asking about whether there would be value in whole pelvic radiation and, again, without knowing the cancer’s location neither was a fan of pursuing that at this point. Even if we did know the location, they would defer that decision to the radiation oncologist (RO).
Because my PSA is so low (in relative terms), both seemed to be more inclined to start with just ADT and not a combination therapy of ADT plus antiandrogens. The MO acknowledged that the use of combination therapy could be more effective in controlling the cancer, but cautioned about the increased side effects from doing a combination therapy approach. She also mentioned that using combination therapy is generally reserved for when the cancer is more advanced. (I’m not sure that my research agrees with that thought.)
I believe in her discussion with the UCSD GU oncologist that they said they would probably hold off initiating hormone therapy until my PSA reached 2.0 ng/mL. I’m going to have to do a little research to see if that makes sense.
We talked about intermittent therapy and whether that would be appropriate, and the consensus was that, at my low PSA, I would be a good candidate for intermittent ADT. However, that would depend on my PSA doubling time and how my PSA responds to the ADT.
I did ask if cancer in the lymph nodes would be symptomatic and generally speaking, they said, it’s not. I asked because I had had a weird pressure sensation in my groin last month that was new. (Yes, I’m at that point where I ask myself if every new ache, pain, or sensation is related to the cancer when it pops up.)
They noted going through my record that there was no baseline testosterone test, so we all agreed that that would be helpful to have. The NP put the order in to have that done when I get my PSA tested on 1 May 2024.
The MO expressed concern about my recent cardiac work-ups after my October emergency room visit (nothing of substance was found). She reminded me that hormone therapy does have a small but real risk of increasing cardiac events.
In the last part of the meeting, I did ask if I’ll be seeing the same MO going forward, and the short answer was “indirectly.”
You’ve heard me talk before that one of the drawbacks of getting my care through the VA is that it’s a teaching hospital and that I rarely see the same physician/resident twice. It’s good that I get so many differing opinions, but it prevents me from building a long-term relationship with the doctor as well. Different residents will filter through the oncology department, but the MO I met with will be overseeing all of their cases behind the scenes, so she would be tangentially involved.
I was asking because I likened myself to being an orchestra conductor, coordinating the efforts between the urologists, radiation oncologist, my primary care physician, and now the medical oncologist. I was inquiring if she or anyone else at VA would take the lead on coordinating all of these discussions and treatment considerations. She did mention that they do have a “tumor board” that reviews much more advanced cases to map out coordinated treatment plans, but because I don’t have any substantial tumors in the scans, my case wouldn’t come up for review.
Interesting, though, was the fact that the NP and MO both viewed this meeting as me getting a second opinion instead of a hand-off of my case from the urology department to the oncology department. From their perspective, the urology department still has the lead on my case until I decide to move forward with hormone therapy.
One thing the NP brought up early in the conversation was that any treatment plan would have to be aligned with my goals. If my goal was to prevent metastasis (or delay it), then starting hormone therapy sooner would make more sense. But if my goal was to avoid hormone therapy side effects for as long as possible—recognizing the inherent risks—then it may make sense to delay therapy. To be honest, I’m not sure where on that spectrum I want to land.
We wrapped up the meeting, coming to a consensus that:
- We’ll conduct a PSA test and get a testosterone baseline on 1 May 2024.
- Calculate the PSA doubling time including the latest results.
- Evaluate the results and decide whether to schedule another PSMA PET scan.
While I didn’t keep specific track of the meeting, it lasted somewhere between 30 and 45 minutes, which is quite unusual.
I came out of the meeting in good spirits because it was one of the most productive, collaborative meetings I’ve had in a long time. The conversation flowed quite easily, and I attribute that to the fact that women healthcare professionals seem to be much better prepared and much better at listening to a patient’s concerns than some of their male counterparts. This isn’t the first time that I’ve noticed that. (Don’t forget, it was the thoroughness of my female primary care physician that discovered the cancer via a DRE in the first place.)
To be honest, I’m not sure why I felt compelled to mention these observations based on my personal experiences. I just suspect that some prostate cancer patients may be reluctant to discuss problems with their male bits with female healthcare professionals. You might be surprised by the difference in quality of care that you receive, so don’t rule them out.
I have been more than satisfied with my care from the VA so far but, as my cancer advances, I am beginning to wonder if it makes sense to step outside the VA so I can get a team that is dedicated to my case and one that I can build a long-term relationship with.
At the top of my list would be UCSD followed by Scripps/MD Anderson. But the VA already has such close ties to UCSD, it’s almost like I’m getting care from them already. In fact, the MO I saw is a clinical professor of medicine at UCSD, most of the residents I see in urology are from UCSD, and my VA-provided RO is from UCSD but seeing him required “community care” pre-approval. (Community care is generally only approved if the VA doesn’t have the capacity or capability, so it could be tricky arguing to obtain it.)
So while I’m on Medicare and it would be relatively easy (but more expensive) for me to step away from the VA, I would explore options for getting approval to move into community care at the USCD GU medical oncologist through the VA first.
I’m not keen on changing horses in mid-stream, but it may make sense in the long run. I’ll have to think that through.
And now you know why I didn’t want to try and type this out on my phone on Tuesday. 😂 Thanks for reading this far!
Header image: A rare spring snow in Cuyamaca Rancho State Park, San Diego County, California, 14 March 2024
Dan's Journey through Prostate Cancer 
Thanks for keeping us up to date Dan. I can only pray for being on this earth as long as you have been dealing with this.
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Thanks for your comment, Tony. I’m not sure where you are at in your journey, but I hope that there are still plenty of quality days ahead for you.
All the best,
Dan
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Hi Dan
I always look forward to your updates, and always impressed with your depth of perception and analysis. I am sorry, however, that it has even had to get to this point and you are having to go through this. I admire your strength and resiliency, and appreciate the bits of humour you inject into your blogs.
I like your analogy of “being a conductor”, and the same sentiment is felt up here in Canada and often a point of discussion about wondering who really is the “lead” in our care plan. I guess it comes down to ourselves, essentially, which is not what we believe it should be. We are not the experts, not everyone has the time to dedicate to doing the research, the footwork, the “conducting”, nor should they when their energy really should be going towards healing. We have a urologist speaking at our next support group meeting, and I am going to use your “conductor” analogy (if I may?), to pose the question about who really should be leading at different stages.
Dan, on behalf of all of us up here in North Vancouver, who are grateful to you for speaking to us last year, we continue to wish you well and for the best outcome as you continue your treatments.
Cheers, Jeff
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Hi Dan, as I learned from your blog this was very thorough thanks to your preparation and a lesson for us all on how to get the very best out of our sessions with medical professionals. I liked your argument about the fact that as you have had your prostate removed any PSA producing cells are then metastatic. When men have had their prostate removed and they have a recurrence I notice that on many occasions ( Not a scientific fact, just my impression) the recurrence often takes place in the prostate bed. I don’t fully understand what the prostate bed is other than it suggests that prostate cells remain in place where the prostate was attached to whatever it is attached to in the body. It leaves me wondering if an option for you would be radiotherapy only to the prostate bed rather than the general abdominal area.
Now I am not sure if you have had radiotherapy and I have just forgotten!
I just think that if you can put off a PSMA scan until your chances of detection are greater than 90% that an awful lot of the questions hanging around would be answered. At the same time I fully understand your reluctance to put treatments off as we don’t want the cancer to gain a bigger foothold in our bodies than the absolute minimum because earliest treatment has the greatest impact. A real dilemma for you. Like you I thought the best results now obtained are from combining Lupron with Enzalutamide or Apalutamide from the ENZAMET and TITAN trials.
Final thoughts, I have never experienced bad effects from my prostate cancer diagnosed in 2017, the effects have all been from the treatments for prostate cancer, namely Lupron, Chemo and radiotherapy, but I also know that without those treatments I would not be here. I had Enzalutamide added to my Lupron injections 3 years ago and I did not notice any additional or worse effects from the Enzalutamide. The Lupron had the biggest impact on reducing my PSA AND it had the biggest negative effect on my quality of life. I have just gotten used to it. From another PCRI video you directed us to I also know that intermittent ADT or adaptive ADT as it is also known you could be put on it for a limited time and see what it does to your PSA. It wouldn’t tell you where it was but it would tell you that it was lurking somewhere.
Best regards and good luck Dan with your decisions.
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Hi Charles,
Thanks for your thoughtful comment and sharing your own experiences.
No problem on keeping tabs on all the details of my case. Yes, I did have salvage radiation to the prostate bed only in July and August 2022. It appeared to miss the mark because my PSA test in January (0.37) was slightly higher than it was before we started the radiation therapy (0.36).
We also did concurrent ADT with the salvage radiation therapy. I received a six-month dose of Eligard about eight weeks before the start of radiation. I believe was luckier than most because the side effects were minimal. I had mild to moderate fatigue, diminished libido, lost some body hair, and my emotions were a bit more hair-triggered. There were no hot flashes or weight gain.
It’s good to have your first-hand account that Enzalutamide didn’t really add to the side effects that you were experiencing. That’s something to keep in the back of my mind.
You’re also right in that trying to time the treatment is one of the biggest challenges (and frustrations) in dealing with this disease. Blindly treat early or risk the disease running rampant while you’re waiting for it to show up on a scan?
Thanks, too, for your comments about my preparedness going into the meeting. I’m pretty good about writing down my list of questions or topics that I want to discuss, and bring a note pad to scribble down notes along the way. It’s not a perfect system, but it helps me get the most out of my meetings.
Thanks again, Charles, and I’m glad that your treatments continue to keep you around. You’ve been a valuable resource throughout this journey.
All the best,
Dan
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Hi Jeff,
Thanks for your comment and feedback. I appreciate it. By all means, go ahead and use the conductor analogy for your next meeting.
On the one hand, I enjoy being the conductor because it’s my body and my life after all, and I have a vested interest in how things go. But, as you mentioned, we’re not the experts so our ability to conduct is limited.
Even so, there are times where we may have more current information than the band members (doctors). I can recall a few times where I’ve brought papers on studies that the doctor was unaware of. It’s a team effort in the end.
Say hello to the group and wish all of them well from me!
Dan
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So sorry you have to deal with all of this, Dan. Seems to me that it’s a long haul from where you are now to 2.0 (the longer the better, I guess), and that has to take a mental toll. Please keep writing, keep walking, and keep a positive frame of mind as best you can. From years of reading your blog, I’m pretty sure you’ll be able to do all of that better than most in this situation. Know that we’re all behind you as you conduct this orchestra.
Question: have you had any genomic testing (Decipher, Prolaris, etc.) to determine how aggressive your cancer is? If not, that might be a good piece of information to have, both to ease your mind and to inform any future treatment you may be considering.
Finally, you may have noticed it’s been a bit since I weighed in. After 7+ years of post-surgical PSAs of undetectable to .1, a test late last year showed up just above the magic .2. Turned out to be anomalous, but it meant insurance would pay for the full suite of scans/MRIs. All clear, but I decided to pull the ripcord on SRT at .16. RO was on the fence about ADT, but we agreed that I’d probably be able to tolerate it well as a younger (!) patient in decent (!) shape. So…1 mo. Firmagon, 3 mo. Lupron that I’m about halfway through. 25 hypofractionated treatments for a total of 62.5 Gy ended 2 weeks ago. Mild fatigue, more from having to prep for 7 AM appointments, mild GI effects that have pretty much resolved now, and mild/moderate urinary effects that may have had more to do with drinking so much bleeping water every morning! RO sung the praises of OTC ibuprofen daily (“inflammation is the enemy”) and resistance/cardio training, so I maxed out on both. All in all, I feel lucky, and I’m hoping to keep feeling that way after I have a few PSA tests under my belt later this year.
Anyway, it’s not about me. Continue to keep us posted, Maestro. All the best. —J.C.
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2 quick questions from a fellow reader of Dan’s blog :
Was Orgovyx an ADT consideration?
Was SRT Prostate Bed + Pelvic Lymph Nodes?
Thanks.
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Hi Rob:
I asked about Orgovyx and was told that at my medical provider, it was approved immediately only in “advanced” cases. The paperwork to get me approved would’ve taken months, and, frankly, I was stressed and looking to proceed with alacrity at that point.
And the radiation was to the pelvic bed and the lymph nodes- the whole caboodle.
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Hi J.C.,
Sorry that I haven’t replied sooner… Thanks for the update on your own situation. I hope that all the treatments that you’re going through do the trick. I know my own RO said it can take 18 months or more to see if the radiation did the trick, so plenty of waiting ahead for you.
I had to chuckle with your “so much bleeping water” comment. So true. I don’t miss that at all.
No, I haven’t had any genomic testing done yet. Honestly, it’s not something that I’ve discussed with any of my team, and I’ll put it on the list for my appointment in May.
Wishing you all the best and a better outcome with your salvage radiation therapy.
Dan
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Hey Dan… I’m very impressed with your blog. I will recommend it to patients in Wyoming.
I am a friend of Wayne (and Bruce)…. he told me about your site. I am an Emergency Medicine doc in Wyoming…. certainly don’t have anything to offer c/w oncology recommendations, but I think what you are offering will be of tremendous help to others.
All the best… and thank you for sharing your journey.
Greg
Also…. great photography!!
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Hi Greg,
Thanks for your kind words and you’re willingness to share my story with other prostate cancer patients. Patient education is important, and I wish I had known more about prostate cancer BEFORE I was diagnosed. It would have given me better insights into my treatment decisions.
Thanks again!
Dan
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