Tag: Cancer

Day 4,880 – Full MO Report

On By DanIn Hormone Therapy, Prostate Cancer12 Comments

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

PCRI Video: Combining First and Second Generation ADT

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

Another timely video from the Prostate Cancer Research Institute talking about the recent EMBARK study that examines combination ADT + enzalutamide therapy versus Lupron alone or enzalutamide alone. (The study was funded by Pfizer and Astellas Pharma, the manufacturers of enzalutamide.)

There were 1,068 patients divided into three groups that were followed for five years. The groups were combination therapy (leuprolide + enzalutamide); leuprolide alone; and enzalutamide alone. The metastasis-free survival rate for each group:

  • Combination therapy: 87.3%
  • Leuprolide alone: 71.4%
  • Enzalutamide alone: 80.0%

One thing the study summary doesn’t address is whether combination therapy accelerates or delays the cancer developing a resistance to ADT. That would be interesting to know. While it doesn’t explicitly say in the summary, it appears that the patients were on the treatments continuously for the five years.

This is something that’s been added to my list of discussion points for my visit with the medical oncologist on 19 March.

Treating Lymph Node #ProstateCancer Metastases | MarkScholzMD

On By DanIn Prostate CancerLeave a comment

Here’s another timely (for me) and educational video from Dr. Scholz and the Prostate Cancer Research Institute.

I have an appointment with the medical oncologist on 19 March, and this has given me a good foundation for the discussion.

Month 159 – Meeting with Urologist

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence3 Comments

Today’s meeting with the urologist went about as I expected it would. In a nutshell, we agreed to punt for another three months and see where we’re at with a new PSA test at that time.

We talked about the clean PSMA PET scan results and the fact that we remain in this inconclusive gray area right now that doesn’t bode well for making decisions about the next steps. He did suggest that I could start ADT now if I wanted to do so, and he debated about whether it would be appropriate to start ADT with abiraterone. He leaned toward just starting without abiraterone if ADT is what I wanted to do, but I also sensed that he felt no need to rush into this given the negative scan results.

One interesting comment that he made (and I wish I had taken better notes) was along the lines of ADT alone has not been shown to extend life expectancy. The unsaid implication was, “Why go through the side effects of ADT now if studies show there’s no discernable difference in the outcome?” That’s something that I need to dig into a little more.

One interesting thing that’s popped up in my conversations with others in prostate cancer forums or here is testosterone level testing. In all my years of being treated, my testosterone level has never been tested, so we talked about that. It’s something that we can do just prior to starting ADT to establish a baseline reference point.

I mentioned my email conversation with the radiation oncologist, and talked about the possibility of zapping a lesion should it show up on a PSMA PET scan in the future. The urologist seemed a bit indifferent to that approach (probably an occupational hazard).

During the conversation, I mentioned that my PSA doubling time using the last four values was at just over six months, and he commented that that was “not insignificant.”

We did discuss whether there was value in knowing where the cancer was located at this point, or to just know that the cancer is somewhere and proceed with systemic treatment without knowing its location. My concern is that starting ADT would make finding the location next to impossible on a PSMA PET scan if my PSA is knocked down to near zero.

He kept using the term “metastatic” throughout the conversation which, I suppose, is technically correct. If the cancer is someplace other than where it started, it’s metastatic. But I’ve also learned that there is a lot of gray area in the prostate cancer world when it comes to classifying how and what your cancer is.

I also asked for a consult with a medical oncologist to get his/her insights on where I’m at and what should be done next and he was going to put that request in for the consult.

I have a three-month follow-up appointment and PSA test scheduled for 14 May 2024, so the saga continues.

About an hour after I returned home from my appointment, the PCRI posted this very timely video on micro-metastatic prostate cancer.

I’ll probably publish this video as a stand-alone post so it’s easier to find.

Header Image: La Jolla Shoreline, La Jolla, California

Day 4,832 – PSMA PET Scan Results

On By DanIn imaging, Prostate Cancer2 Comments

No evidence of recurrent prostate cancer or metastatic disease.

I know I should be excited but, at the same time, I don’t think I’ve been so frustrated by “good” news. Thanks to the steady increase in my PSA, we know something is happening somewhere, and I was really hoping this scan would end the game of cat-and-mouse that we’ve been playing trying to determine where the cancer is and what to do next. It didn’t.

Even though I recognized going into the scan that, at my PSA level (0.37 ng/mL), there was an approximate 40% chance of detecting something, I was hopeful it would come up with something this time. Silly me and my expectations.

Detection Rate on a Patient Basis Stratified by PSA and Region Tr indicates prostate bed only; N1, pelvic nodes only; M1, extrapelvic only. Proportion of patients with 68Ga-PSMA-11 PET positive findings were stratified by PSA range and region of disease in accordance with PROMISE. https://pubmed.ncbi.nlm.nih.gov/30920593/

The other thing I’m beginning to wonder is if I’m in that 10% of patients for whom PSMA PET scans don’t work. (You may recall that being mentioned in this video from the PCRI: Rising PSA After Prostatectomy.) I have to dig into that more to see if it’s just PSMA PET scans that use Gallium-68 as the tracer, or if that applies to any PSMA PET scan regardless of the tracer used. I’m guessing it’s the latter.

Choline and Axumin scans are another option, but they don’t start reliably picking up cancer locations until the PSA is at 1.0 ng/mL or higher. Assuming my current PSA doubling time (6.2 months) remains steady, that means waiting another 11 months before I hit 1.0 ng/mL for those scans to have a chance of seeing anything.

I’ll be putting together my list of questions for the urologist appointment on 13 February (I’m open to suggestions). I suspect we’ll have a good discussion on subsequent PSA testing, the value of knowing where the cancer is located at this point, and when to start hormone therapy.

Again, the silver lining in this is that my scan didn’t light up like the Las Vegas strip. I need to keep that in mind.

Happy Friday!

Day 4,820 – PSA Results

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence2 Comments

Okay. I got antsy and went for my PSA test on Friday instead of next week. As expected, my PSA increased from 0.33 ng/mL on 6 December 2023 to 0.37 ng/mL on 19 January 2024.

The silver lining in that cloud is that the rate of increase slowed a bit and it didn’t increase as much as I expected it would.

Sometimes, I get too nerdy for my own good. There was a 91% increase between the May and October readings, and there was a 57% increase between the October and December readings, so I averaged the two increases (74%) and projected that this increase would land me at just over 0.5 ng/mL. This increase ended up being just 12% over the previous December reading. Fickle PSA.

I ran the numbers through the Memorial Sloan-Kettering PSA Doubling Time calculator again, using the five values from March 2023 (0.13) on. My PSA doubling time dropped from 6.7 months to 6.2 months, and my PSA velocity increased from 0.2 ng/mL/yr to 0.3 ng/mL/yr since calculating it back in December.

I went for the test early because I really wanted to know the PSA value going into the PSMA PET scan that’s scheduled on 31 January 2024. Plus, if it dropped, I would have had time to ask the urologist if it was worth going ahead with the scan at a lower PSA level. (Remember, I went for a PSMA PET scan when my PSA was 0.22 ng/mL, and it didn’t show anything at that PSA level. Why subject myself to another dose of Gallium-68 if the outcome may not produce any useful information?)

My follow-up with the urologist to review the PSMA PET scan and PSA results is on 13 February, and we’ll map out what’s next from there.

So that’s the latest and greatest. More to come.

Header image: The famous Torrey Pines Golf Course, San Diego, California, home to the Farmers Insurance Open golf tournament

Androgen Deprivation Therapy and Prostate Cancer

On By DanIn Prostate Cancer6 Comments

With androgen deprivation therapy (ADT) a near certainty in my future, I’ve been trying to get smarter about it. In my research, I came across this video from Dr. Eric Small at the University of California San Francisco (UCSF), that gives an introductory overview of ADT.

If you’re not familiar with some of the lingo and drug names, it may be like taking a sip of water from a fire hose, but Dr. Small gets the concepts across pretty clearly.

After watching the video, my pea-sized brain came up with what may be an oversimplified, imperfect analogy that may make Dr. Small cringe. (I’m happy to be corrected if this analogy is out to lunch!)

We know that prostate cancer needs testosterone to survive and grow, and the testes and adrenal glands both produce testosterone. So how do we cut off the supply of testosterone from those two sources to the cancer cells?

Imagine that the cancer is your backyard swimming pool (even a kiddie pool). Pools (cancer cells) need water (testosterone) to do what they do best. Your testes are one hose that fills the pool, and your adrenal glands are the second hose that fills the pool.

If we don’t want water (testosterone) in the pool (cancer), we shut off the spigots on the hoses to stop the flow. To turn off the spigot from the testes, we use one set of drugs (Lupron, Eligard, Zoladex, Firmagon, or Orgovyx). To turn off the spigot from the adrenal glands, we use a different drug, Abiraterone.

But there’s another way to stop the pool from getting water, and that’s to place a watertight cover over the top of it. That’s what the antiandrogen drugs do—they cover the pool and stop the water from getting in. These drugs are Flutamide, Nilutamide, Bicalutamide, Enzalutamide, Apalutamide, or Darolutamide.

ADT blocks the production of testosterone and antiandrogen drugs prevent the cancer cells from receiving the testosterone.

I’m sure more research is in my future, and I’ll be certain to share what I learn. In the meantime, don’t giggle too much at my analogy.

Month 116 – Cancer Treatment Decisions

On By DanIn Prostate Cancer, Treatment16 Comments

One of my regular readers of this blog and I have amazingly similar stories when it comes to our diagnosis and treatment. We were both diagnosed around the same age, our PSA levels were quite close to each other, and we both opted for surgery. Both of us had undetectable PSAs well after the surgery—until we didn’t. His PSA became detectable around the three year point, and mine became detectable at a few months shy of five years.

He opted to begin salvage radiation therapy (SRT) along with androgen deprivation therapy (ADT) when his PSA hit 0.08 ng/ml. And, if you’ve been following my blog for any amount of time, you already know that I’ve been punting that decision after nearly every PSA test, with my PSA bouncing around in the 0.14-0.16 ng/ml range without seeking SRT or ADT yet.

Who made the right decision?

Both of us.

When cancer is initially introduced into your vocabulary—and even long after—you’ll be faced with a myriad of decisions to make. Is treatment warranted, or can I go on active surveillance? If treatment is needed, do I opt for surgery, radiation, or one of the newer methods available? Which doctor has the most experience? Which hospital has the right equipment? The list goes on and on.

Many of those same questions are applicable in the case of recurrence, too.

When it comes time to make some of those decisions, remember first and foremost that it’s your body, your family, and your circumstances. You—and not anyone else—have the final say.

Do your research using reliable, trusted sources and don’t be afraid to ask the doctor questions or call them out on something you’re not comfortable with. Seek multiple opinions from the doctors that could provide the different treatment options to you (keeping in mind, of course, that some may push their own specialty over others).

Talk to other patients or read their silly blogs to see what their experience has been, knowing that each individual cancer case is unique and will not apply directly to your own situation.

Don’t let the words “prostate cancer” scare you into acting immediately. Unless your Gleason score is an 8 or 9, you do have a bit of time to do this research and consulting with different specialists. I made my decision to have surgery rather quickly and never consulted with a radiation oncologist to see if that would be a viable first treatment option for me. Do I regret that? No. But, with a Gleason 6, I should have slowed things down and have had the meeting anyway.

One of the options that is often overlooked is to do nothing. Okay, it’s not exactly doing nothing—you’ll definitely want to be on active surveillance—but you don’t have to leap right into a treatment option if your cancer is  low grade / not aggressive. My sense is that more and more doctors are beginning to embrace that approach to avoid over-treatment.

That brings me to my final point. Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.

If my PSA continues to slowly increase and, at some point my body scan lights up like a Christmas tree because I haven’t started SRT, I’ll probably curse like the sailor I once was and say, “I knew this was a possibility. What’s next?” But I’ll also know that I will have had six or seven or more years of high quality of life without any short or long-term side effects from SRT and/or ADT, and that is of great importance to me. As much science as there is in the treatment of prostate cancer, in the end, it’s an educated crap shoot.

Who made the correct decision?

Both of us. One of us. Neither of us.

Time will tell.

Stay Well! Wear A Mask! Wash Your Hands! Stay Home!

Month 75 – Distracted from Cancer

On By DanIn Prostate Cancer5 Comments

It’s good to be distracted. I’ve barely thought about prostate cancer since the holidays, and that’s been fantastic. What’s not fantastic is the reason for the distraction. One word: Trump.

I’ll not turn this into a political blog, but suffice it to say, I’m not a fan. But, seeing as the repeal of the Affordable Care Act (ACA) is on the top of the new administration’s “To-do” list, some passing thoughts on the topic here are not out of line.

When I decided to leave my job five years ago and move from Indiana to San Diego (about 15 months after my surgery), my health insurance was intact through COBRA coverage. (For those readers outside the U.S., the Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985 gave employees who left their company the right to continue their health insurance coverage through their former employer’s health plan for up to 18 months after leaving.)

My COBRA coverage ended in September 2013, just a few months before the ACA’s requirement to cover individuals with preexisting conditions kicked in on 1 January 2014. I tried to purchase insurance on my own long before the September expiration of my coverage, but was told that I was uninsurable because of my prostate cancer diagnosis or, if they would cover me, the monthly premiums would have been north of $2,500 USD per month.

I’m a veteran of the U.S. Navy, so in May or June of 2013, I turned to the Veterans Administration (VA) to see if I would be eligible for care.

For those who don’t know, there is a tiered eligibility system in place to determine your eligibility and your level of care with the VA. Not all veterans will be eligible for care. Fortunately (?) for me, I served in-theater in the Persian Gulf during Operation Desert Shield/Desert Storm during the first Gulf War. That made me eligible for coverage under the VA, and it’s where I’ve been getting my cancer care ever since.

We’ve already heard discussions of lifetime caps on coverage being reimposed; debates over preexisting conditions; and a host of other changes that scare the crap out of most people, cancer patients in particular. The administration has already imposed an across-the-board federal government hiring freeze at a time when the VA healthcare system is struggling to provide quality care to all the veterans from the Iraq and Afghanistan wars, as well as to veterans like me. It’s simply bonkers (that’s a technical term).

So I’ll climb down off my soapbox now and thank the new administration for pushing the notion of cancer recurrence pretty much completely out of my mind for the last two months. There are bigger things for me to deal with than piddly little ol’ cancer.