After having survived a Stage 4 throat cancer diagnosis in 2003, I have been much more diligent in having routine recommended screenings performed.

In March 2009, my PSA on my routine physical jumped from 3.4 to 4.9. There was no abnormality on the DRE (Digital Rectal Examination). My GP referred me to a Urologist who recommended a biopsy. The biopsy results indicated 2 cores out of 13 positive for cancer, Gleason score 3+3=6, 12% involvement.

The one thing my previous cancer experience gave me was the knowledge of how to research available treatments. At least this time I have options (not so much with a stage 4 diagnosis).

After a lot of research, and discussions with PC patients and a second opinion at the University of Chicago, I have opted for now to choose Active Surveillance.

My surveillance involves a PSA test every three months, DRE at 6 months, and a follow-up biopsy at 12-18 months.

So far, There has been no abnormalities on DRE, and my PSA results are:

March 2010-4.9
July 2010- 4.0
October 2010- 3.1
January 2011- 3.2

At my most recent appointment, we discussed the timing of the next biopsy, and agreed that if PSA and DRE continue as they have been, then the biopsy will be scheduled for October (18 months after initial).

I have been in Active surveillance for 18 months now. My PSA level, taken every 3 months, has "flat-lined" at 3.1 to 3.3 since my initial biopsy. My followup biopsy, taken last week has me a little confused/concerned.

One core, in the left base was positive for PCa, 4mm, 25%, Gleason 3+3. while one core in the right apex showed HGPIN. The initial biopsy in March of 2010 showed 2 cores in the right apex with PCa, both 4mm, 12%, 3+3=6. I have an appointment next week with my Urologist to discuss the results and future treatment/surveillance.

I'm inclined to continue with AS, but the fact that PCa was detected on the opposite side of the prostate this time has me a little concerned. An interesting conversation with my Uro while he was performing the biopsy. He stated that few of his peers were encouraging AS, with the exception of those in Academia.

Now, I live in the Chicago area, and there are a significant number of highly regarded academic centers, including the University of Chicago, Loyola, Northwestern, and the University of Illinois at Chicago. This being my second dance with the Cancer beast, I am inclined toward being treated at an academic center. My stage 4 throat cancer was successfully treated at the University of Chicago.

I would strongly encourage looking in to an academic based program. I realize that not everyone is as fortunate as I am, having a number of top treatment choices within commuting distance, but I would encourage those who are to take advantage. I'll post another update when I have spoken with my MD.

It's been a while since I updated. In October of 2011, I had a followup biopsy (two years after the initial biopsy). The results, 1 core Gleason 3+3=6, encouraged me to continue Active surveillance.

PSA every 3 months, DRE 6 months. The PSA levels have varied between 3.1 and 3.4

I am very glad that I have chosen the Active Surveillance route. I may eventually require treatment, but not yet. And "they" have more time to develop more definitive tests, and treatments while I wait.

A long time between updates. Still participating in Active Surveillance. 3 Years now.

PSA every 90 days, DRE every 180. Due for another biopsy in August. So far, the disease appears to be indolent, and I will continue to monitor, but haven't decided which treatment method if it becomes necessary. There is now a proton center near me (60 miles), so I may look into that.

My only fear right now is that as I approach 65 years of age, my medical insurance situation will change drastically.

Also, as I approach 10 years from my Stage 4 throat cancer, I must be vigilant for the secondary cancers that might be caused by the treatment I received (chemo & radiation).

Generally though, life is good. Scheduled to run a half marathon this weekend. Watching my grandchildren grow.

Good health to all.

Chuck

Not sure why the current Treatment Method selections don't include Active Surveillance. "None" is just rude. It would imply that I am just blindly going on with life, PC be damned, while nothing could be further from the truth. [It's available under "Non-Invasive", and we updated your story to reflect that.]

I have now been on Active surveillance for over 4 years, PSA; every 3 months, repeat biopsy every 18 months. My PSA has gradually increased from 3.5 to 6.2. I have had 3 biopsies performed and the results have been consistent, 1 or 2 cores with Gleason 6 carcinoma, no more than 12 % involvement. The most recent, 1 core,<5%, 1 HGPIN, <5%.

So far, an indolent disease. I have pretty much come to the conclusion that I am one of the victims of over-treatment/over-diagnosis. In hindsight, I should have insisted on a repeat test of the one time spike in PSA from 3.5 to 4.9 that brought on all this.

I am very grateful for the support of Active Surveillance that my Urologist has provided.

Over 4 years on Active Surveillance. PSA has gradually risen from 4.9 to 6.2, and 3 biopsies have found one or two positive cores with Gleason 6.

Though the Urologist would have me submit to a biopsy every year, I am decreasing that frequency to every 18 - 24 months, depending on PSA/ DRE results. Joked with the Dr. at the last biopsy that we were doing a prostatectomy on the installment plan, 12 cores at a time. One does develop a dark sense of humor...

Very glad that I have chosen this path. I am symptomless, and only really think of the cancer every 90 days when I go in for the PSA test.

Still on Active Surveillance, 6.5 years now. Participated in a new test this year. In February I had a Fusion Biopsy, which involved a 3T MRI of the prostate being "fused" to the live ultrasound, so that the Urologist sampled areas of concern identified on the MRI instead of just throwing darts in the dark.

Now, the urologist got kind of carried away and took a total of 31 samples, which led to excessive bleeding, and a week with a catheter installed due to urinary obstruction caused by the bleeding.

The good news is that with that many samples, the pathology identified only one with carcinoma, <10%, Gleason 3+3=6, and several with HGPIN.

The plan going forward is to perform another 3T MRI, and compare it with the last one. Another biopsy will be perform if the need is identified by the MRI.

Well, here I am, more than eight years after my initial diagnosis, and I still haven't decided which treatment method I will opt for when it comes time to treat.

The plan right now is to have another 3T MRI in Feb-Mar time frame, and based on the results, perhaps another Fusion Biopsy (with significantly fewer samples this time).

Even though we over-sampled last time (31 samples), there was still only one positive for cancer, and it was a Gleason 6. However there was a lot more HGPIN, which has my urologist concerned, and maybe a little nervous.

If you are thinking "This guy would have been better off for the last nine years not knowing he had Prostate cancer" then your thinking what I'm thinking. My wife would definitely be better off. After surviving a stage 4 throat cancer diagnosis, I sure didn't need to be worrying about a slow growing, non invasive cancer, and dealing with repeated biopsies and blood tests, but here I am. Once you open the box, it would be irresponsible to not monitor it.

So, what do I do? There is a University based hospital 50 miles away with an outstanding robotic surgery department. There is also a Proton center about an hour away. And my urologist is one of the top surgeons in the country and can do robotic surgery at a hospital nearby. I went through radiation treatment for my throat cancer, and the lingering and late developing side effects from that have me reluctant to consider radiation treatment.

I am, at 68 years old, still very active as a runner, and cyclist, and yes, still sexually active. I am very concerned about the adverse side effects of treatment, which keeps me flip-flopping back and forth as to which mode of treatment I will go with when the time comes. I wish I could offer more definitive guidance after nine years, but I can't.

Wishing all good health going forward.

Still on Active Surveillance.

Latest Fusion biopsy still only one core positive, Gleason 6, though there is an increase in HGPIN.

Don't know how much longer I'll be on AS. I suppose I should decide on a treatment method soon.

Not much to update. The PSA numbers keep creeping up slowly. The most recent 3T MRI showed no change from the previous, so my urologist recommended that we forego another biopsy for now.

I know that I am approaching the time that I will have to treat the disease, but I'm still unsure which path I'll take. The bottom line for me is that I have been on Active Surveillance for nine and one-half years with no side effects. Had I panicked and had surgery nine years ago, there's no telling what my life would have been like.

I am very happy with my decision.

Well, here I am, coming up on 10 years on Active Surveillance.

I had another Fusion Biopsy a couple of months ago, my third, and the results are the same, a total of two positive cores, Gleason 6.

The plan is to remain on Active surveillance, with a PSA test every 3 months, and a biopsy in 2 years if PSA remains stable. I remain glad that I have chosen this path.

Good Health everyone.

Well, here I am 13.5 years into Active Surveillance.

I am about to the point of curative treatment, as my most recent Fusion biopsy came back with at least one Gleason 7 sample. It was a 3+4, and the 4 was only 5% of the sample.

Rather than jump right into surgery, my Urologist has suggested that we submit the tissue for genomic testing, so I am waiting on the results of those tests. Note that the genomic tests may not be covered by Medicare, and can be quite expensive (~$3,500.00 USD).

So, I wait. I have decided that when it comes time for curative treatment, I will be undergoing a robotic RP. I have a skilled surgeon, with many procedures under his belt, and for those who haven't read my entire story, I have experience with radiation treament from a Stage 4 throat cancer diagnosis and treatment 19 years ago. The radiation side effects continue to accumulate even 19 years later, so I look at it this way. On the day I complete surgery, I will be at my worst, and improvements will occur over time, whereas on the day I would complete radiation treatment, I would be at my best, and things will deteriorate over time. Just my opinion, but with a strong background on radiation treatment. Others may disagree.

I am now 74 years old and a widower. I am very physically active, running, cycling and rowing. My excellent health has allowed me to rehab from knee replacement surgery, and return to running.

I am hoping to eventually put this behind me so that I can get involved in fostering Labrador Retrievers through a local rescue.

Well, here I am, over 14 years since my initial diagnosis. Still on Active Surveillance. PSA has plateaued at around 9-9.5. The genomic testing was very difficult to interpret, but the short version is that my cancer is not likely to become aggressive.

But, as they say, it's always something, and I am now also dealing with a bladder cancer diagnosis. I have had 3 surgical procedures for that (TURBT), and have cystoscopy every 3 months, along with my quarterly PSA. Should the bladder cancer require bladder removal, the prostate would come out with it, so I get a two-fer.

I am very glad that my Urologist encouraged AS upon initial diagnosis.

I am now 75 years old, and except for these two cancers lurking in the background, I am very healthy, running or cycling every day, and competetive locally in age group races. Life is pretty good. I really don't think about my cancers until my quarterly tests approach.

I wish everyone good health.

Well, it's been an interesting and confusing year since my last update.

My well-behaved PSA level, which had plateaud at around 10.0 for several years, suddenly increased and accelerated. A January 2024 sample came in at 12.4, then a July sample was at 16.7. Meanwhile, an MRI Guided biopsy in May found 6 samples positive for cancer, all Gleason 6,Grade group 1.

This all lead to confusion, as the PSA acceleration and the biopsy results did not seem consistent with each other.

My Urologist ordered a PSMA PET scan to rule out distant mets. The results showed increased PET activity only in the right central zone of the prostate, so, good news/ bad news. No metastisis, and no answer on the accelerating PSA values.

For now, we will go back to 90 day PSA monitoring, but we are reluctant to perform additional biopsies. My Urologist and I have joked that I'm undergoing a prostatectomy on the installment plan with the number of biopsies I have undergone in the 15 years since initial diagnosis. He is still leaning towards radiation treatment as definitive treatment at this age and stage. As I have stated before, I am a 21 year survivor of Stage 4 throat cancer, and the side effects from that radiation treatment are still adversely affecting my QOL on a daily basis.

The saga continues...

Chuck's e-mail address is: squamous1 AT gmail.com (replace "AT" with "@")