Posted by Jackwb on May 17, 2019 2:30 pm
I just hope that those that go are familiar with this venue...there really is a creek and the mosquitoes will be hungry and waiting for them. Mick should bring the bug-off.
Posted by WesT on May 17, 2019 3:08 pm
Prostate Specific Antigen
|Methodology: Abbott Architect immunoassay.
Results should not be interpreted in isolation as
absolute evidence of the presence or absence of
Changes in serial results may be misleading
unless all Total PSA results are from the same
Posted by Bills10 on May 18, 2019 6:39 am
i got my catheter out on May13, that went well. The Doctor told me the pathology report showed my cancer was stage 3, not 2, it had spread outside the prostate, however he is confident he got it all, no additional treatment right now. I have a follow up meeting and PSA scheduled for 8 weeks and a meeting scheduled for physiotherapist. I’m feeling fairly well, I’ve made the last two nights without leaking, although I’ve had to get up twice each night and made it to the bathroom without leaking. Some leakage during the day, I’ve been trying to go regularly to minimize that. I’ve been doing some walking, but would like to be able to do some yard work.
Posted by WesT on May 18, 2019 11:38 am
Walking is good! If you have a dog that isn't a puller you should be able to get some quality time walking the dog. If your close to a park this time of the year is great to see migrating birds. Taking quiet self-reflecting walks will give you an opportunity to take everything in and do self-assessments as to your progress.
Keep a log of your progress as well. A quick journal of medications, exercise, activities, bodily functions and progress. If something goes wrong, you may be able to pinpoint exactly what caused it and avoid it in the future. It may also show what worked in helping with your recovery. Good to look back and get a chuckle as well..... And, if you decide to document your whole experience more formally, you have notes to refer to.
Posted by Bills10 on May 18, 2019 1:30 pm
Auto-correct isn’t the greatest at times, I meant to say physiotherapist who specializes in this type of situation to rehabilitate the pelvic muscles. She is set up in my urologists office. She doesn’t want to see me for a month or so, I guess until things heal up a bit. We are lucky, my dog is not a puller and our backyard backs onto a park with two ponds and lots of birds. I was surprised the other day when a wild turkey ran past our house. Good idea about the log, thanks for the tip.
Posted by Al_XB on May 21, 2019 10:00 pm
I am back again. My last full report was on 18 Nov 2018 and before that it was March 2018. Hopefully I am leaving a trail of bread crumbs for the next person taking this journey. I completed another 6 month PSA checkup and it was 6.6. Things look good at the moment and so here is what happened.
The intern urologist (my third or fourth since first going to the Cancer Clinic in March 2015) said that my PSA was within the normal range. Really! Now they tell me. The latest Blood Report indicated a PSA reference range of 0 - 6.5 but he said between 6 and 7 is considered normal. Opinions can vary based on your age and prostate volume. He asked me if anything had changed, and I said things felt the same. I still get up 1-3 times per night depending on whether I drink water, tea or coffee in the evening. Tea and coffee are definitely diuretic drinks! Conclusion: if you don’t want to get up at night, don’t drink anything. 😉
I showed him my PSA graph (below) and we discussed the fluctuations.
The 9.65 was 6 days after my 2nd biopsy in Sep 2018 in case you were wondering. He said that the size of the prostate can cause fluctuations and that my ratio of PSA to volume (density) was less than 0.1. Prostate size is an important factor. I asked him what would be the PSA number that would cause me to start considering radiation and he said about 15 given that my prostate is about 115 ml in size. He also said that if they didn’t have any data from my ultrasound, MRI and biopsies then 15 would be considered normal for the size of my prostate. Note that my family doctor sent me to the Cancer Clinic when my PSA went from 4.24 to 5.16 which I believe was a good thing! The normal PSA reference level for my age at the time was 0 - 4.5. If my family doctor, who knew the volume at the time because of an ultrasound waited for a PSA to go to 15 before referring me to the Cancer Clinic, I would still be thinking that all my symptoms were simply due to old age, not cancer. I suspect many men have low risk, low aggressive cancer but don’t even know it.
So, the point here is that density (PSA/volume ratio) should be tracked as well as your total PSA if you are worried. An ultrasound is one way of calculating your prostate size if you don’t know. Your family doctor can make the requisition. An ultrasound isn’t an MRI but it is good enough for a rough estimate. My ultra sound result in 2015 was 95 ml.
Another ratio to track is the Free/Total (F/T) PSA Ratio in your Blood Report. It is another reference point but the F/T PSA ratio is not really that useful by itself for the diagnosis of prostate cancer. They do give you some probability numbers with the F/T ratio.
<0.11 probability of prostate cancer is 49-65%.
>0.25 probability of prostate cancer is 9-16%
This F/T probability is also only applicable when the Total PSA number is between 4 and 10 FWIW. My F/T ratio was 0.15 on the latest blood test and in 2015 it was 0.2. Does it mean I have between 17% and 48% probability of prostate cancer? Pretty vague stuff.
The intern then said that they would normally look closer with a biopsy if the PSA is over the reference point for your age bracket but for me, he would consider it normal if my PSA was 15 because of my prostate size. If the density ratio and the PSA reference measurements both rise then he said I should be more concerned. He also said that they usually do a biopsy a year and a half or 2 years after the last biopsy. Since I have already had two biopsies, he suggested doing another biopsy in 2 years. Oh joy! He then wanted to check the prostate for lumps or bumps.
The principal urologist (same one since 2017) then came by for a couple of minutes after the digital exam and said that things looked stable but he still wanted to continue doing the 6 month PSA checkups. We talked about the PSA/volume ratio (density) again and he said that even if my PSA went to 24 they would still want to do a biopsy to confirm what was going on before taking any action. In my case, he said the PSA number isn’t as important as knowing whether or not the cancer is becoming more aggressive. With my Gleason score, it doesn’t look aggressive at the moment. Fingers crossed.
So, bottom line is that I am still on “active watch” and scheduled for another checkup in November 2019.
BTW, I have usually asked if I can record my checkup sessions on my phone with the doctors. No one has objected so far and I find it very useful to review what they have said once I get home. I also found that my note taking was subject to error or I missed key points. Something to consider if starting this journey because the jargon can confuse you.
I think someone also mentioned doing proper Kegel Exercises in a previous post somewhere. I have therefore attached the guide they gave me for info. I don’t do these exercises 3 - 5 times a day as suggested. Instead, when I have to go, I look at my watch and try to resist for at least 5 minutes squeezing whatever muscles are necessary. It is not as easy as you might think. I find it is mind over matter and trying to hold it with your muscles ain’t easy. The body always wins.
Good luck to all with this cancer. I will be back in 6 months, but I do read the prostate posts if anyone has a question.
Posted by Jackwb on May 22, 2019 8:52 am
Just a long was of saying...who knows? Ask three doctors, get five opinions.
Posted by WesT on May 22, 2019 10:14 am
As Jackwb said though, ask different doctors advice and get varied opinions from each and then some. But each person's cancer is unique and I am not an expert so I will leave the experts to advise accordingly.
Thanks for sharing the Kegel Exercise sheet. Hopefully those that need it will find it helpful.
Bills10 great that you have a park behind you and a dog to enjoy it with on your road to recovery. About two weeks after my surgery I was walking our two dogs. One is a total mommy's boy and after leaving our block he decided that he wanted to be with mom. He did his head flick, escaping the collar and high tailed it down the street heading for home. Like I said, I was two weeks post surgery chasing a dog down the street, not good! Of course he doesn't have any real concept of the danger crossing busy streets. Three cars almost hit him, with me and our other dog in chase..... He did make it home fine and I suffered no real damage but it was pretty upsetting. I made a point of not crossing busy streets when I had them out for the next few weeks....
Posted by Charles on May 22, 2019 10:34 am
Interesting, this PSA thing, that a reading of 24 would trigger treatment. I had surgery after hitting 9.6 yet a friend had problems peeing, his PSA was 2.5 (he's 73 so it was considered good)...he was told that he had an enlarged prostate and had a TURP. A week later he was told that he had aggressive, advanced prostate cancer, stage D2, was immediately put on hormone therapy and starts radiation in July.
Just a long was of saying...who knows? Ask three doctors, get five opinions.
So that TURP might have been lucky (if you can call anything to do with PCa "lucky").
Posted by Mike in EY on May 22, 2019 10:44 am
You said " With my Gleason score, it doesn’t look aggressive at the moment." I assume that means it's 6 or under?
In any case, active surveillance is a great place to be, as far as I'm concerned. I imagine there's on-going stress about if or when the cancer might turn aggressive. But I think it's better to avoid treatment - and its side effects - until it's really necessary. After all, you may never need it!
Good luck and keep us posted.
Posted by SpeedyStill on May 22, 2019 11:10 am
The winter before last I had a lot of trouble with urinary track infections. I must have had at least 6 different antibiotic treatments. During that time it was extremely painful to urinate. Thier was one day and night that I would yell out with pain everytime I urinated. After I was told that I was probably passing Kidney stones.
By chance I had an appointment coming up for the Urologist to check my prostate.
He sent me for a CT Scan a Cystoscopy . After the Cystoscopy procedure he told me that I had a slow growing cancer on my right Kidney. He said that it started back in 2013. That would be when I was having my non-Hodgkin’s Lymphoma follow up CT Scans.
This June I am going back for tests and looking for positive outcomes
I also have trouble wit a leasy faucet and find Tena for Men to work quite well for me.
We all have a common story to tell and this a great place to connect.
All the Best