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PSA Finally Under 1
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Jun 26, 2013 - 9:36 pm
Well, 2 years and 9 months following CyberKnife treatment i n Sep 2010 (and widely varying PSA readings since then), my PSA score has finally dropped under 1 at 0.995!!! That's only 5 1000th's under 1 but it's under 1 just the same. Here's a(nother) recap of the history of my PSA readings since I received treatment: 12/15/10 -- 9.48 03/23/11 -- 3.03 06/14/11 -- 5.07 06/20/11 -- 3.72 09/12/11 -- 3.56 12/23/11 -- 1.81 03/26/12 -- 1.55 06/23/12 -- 1.69 09/14/12 -- 2.12 12/13/12 -- 1.26 03/25/13 -- 1.41 06/25/13 -- 0.995
My RO thinks we can switch to 6 month testing now. I'm still a little worried about the lack of consistency in the test results but I'm tired of worrying about it. Depsite the spikes, the trend is generally downward and, after receiving a clean MRI/MRSI scan in Oct 2012 (after the 3 increasing PSA scores), I'm confident that the cancer is gone and that I can switch to semi-annual testing. So, next test will be due around Xmas this year. BTW, I had double hernia surgery in May and I've pretty much recovered from that already. After a week of some significant discomfort, most of the pain is gone. Still have to lay off strenuous exercise for another month or so but I can already do 90-95% of the things I did before. I also got 3 cortisone shots in my spine & right scroliliac joint to alleviate some back/hip pain. That pain is pretty much all gone too. PS: The urinary bleeding that I was experiencing a couple of months ago resolved itself and went away on it's own after had a cytoscopy in March. The urinary frequency/urgency was reduced after I started Flomax around the same time but I still have to resort to a pee bottle from time to time and, as expected, the Flomax eliminated most of my ejaculate flow but I'm learning to live with that. At least, I can get still get an erection and "come" (even if it almost entirely dry). Hopefully, this will be the end of my medical problems for awhile. Keeping my fingers crossed on that!
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Joined: Nov 2010
Under One results
Good news indeed.
The fact is to be celebrated. How about a trip to Europe to keep the moment unforgetful ?
CONGRATULATIONS.
Note: Regarding your trouble with the Scroliliac joint, I have been reading about the influence that the spine could have in our health if affected by the cancer. In other words, what symptoms could we have that would related to the affected bone. So far I have identified two parts that could be due to spread in my case. The L2 and the L5.
Here is an interesting graphical of the symptoms; http://www.chiroone.net/interactive-spine
VG
Joined: Mar 2010
Thanks!
Thanks, Vasco!
Funny you mention Europe. I "met" a woman on Match who lives in Bedar, Spain not far from where you live in Portugal. Was thinking of visiting her there this fall until I actually met her and found her to be quite a pill but I am still interested in visiting that part of the world and perhaps we'll cross paths one of these days.
BTW, my S/I joint and back problems were caused by excessive weight that I attempted to "squat" while weight lifting. However, when they CAT scanned the region, the spine specialist also found deformities in my L4/L5 which she may have also contributed to the pain. So, when the S/I shot didn't do the job, she hit the L4/L5 vertebrae in my spine too and that actually seemed to do the job. Fortunately, no indication of cancer there.
Joined: Dec 2013
PSA after C/K
Had C/K June 2012 , PSA 16 .
Jan. 2013 / 4.25 , Oct. 2013 / 4.61 . Concerned about both the rise and the still hi numbers . R/O said no problem , to just wait . Hoping he's right .
Joined: Mar 2010
Reason to Worry?
Waldipup:
Like you, I was concerned about the slow rate of decline in my PSA numbers and it took "forever" for my PSA level to drop below 1. My PSA has sinced dropped even lower and you can find a further discussion about that in this thread: http://csn.cancer.org/node/265310.
Based on my experience, the main thing to be concerned about is any consecutive increase in your PSA numbers. An increase twice in a row (in any amount) is an indication of treatment failure and addtional testing should be done to determine if there's still cancer in your prostate or not.
In my case, I had 2 increases in March & June 2012 and had a combined MRI/MRSI (magnetic imaging AND magnetic spectroscopy), which is a very sophisticated test which uses a Tesla magnet inserted in the rectum in conjuction w/the regular MRI scan, to determine if there was still any cancer in my prostate. The MRSI is able to measure the amount and location of choline, which is a marker for cancer, in the prostate. No cancer specific amounts of choline were found in mine. And, after my PSA dropped following the test, the conclusion was that the rise was due to a classic 1-2 year post radiation treatment "bounce" and not an indicator of treatment failure.
Assuming there is no concern about treatment failure, it can take as long as 3-4 years for your PSA to drop to "acceptable" levels following radition treatment. What's "acceptable" varies but it's generally agreed that a PSA below 1 is a good measure of success and that a PSA level below .5 greatly enhances your probablility of 5-10 year post treatment survival.
Best wishes and good luck!
Joined: May 2009
Congrats on reaching less
Congrats on reaching less then 1!
lewvino
Joined: Mar 2010
Thanks, Lewvino: If you
Thanks, Lewvino:
If you missed it, here's the link to my 3rd Year status report, which reported an even lower PSA reading: http://csn.cancer.org/node/265310
Joined: Feb 2012
Hoping for Zero's
Mike, That's great news, keep going down. Sorry I have not been around for while, been alittle under the weather.
best of luck, Ralph
Joined: Mar 2010
1 Yr Post <1 Update
One year following my 1st below 1 PSA reading, the trend is progressing nicely downward. Here are the <1 results so far:
06/25/13: 0.995
12/17/13: 0.624
06/19/14: 0.416
I don't think I've reached my post-treatment "nadir" yet but the current result is very reassuring, since at least one study concludes that that a PSA nadir <.50 is indicative of a PSA disease-free survival rate of 75% and a distant metasisis-free survival rate of 97%.
See: http://www.psa-rising.com/med/ebr/nadir_survivalpostrad06.htm
As mentioned in the article:
"While there is no magic number for the PSA that guarantees that prostate cancer has been cured in an individual patient, in general, the lower the PSA number, the better chances that the cancer will not return or spread," said Michael E. Ray, M.D., Ph.D., lead author of the study and a radiation oncologist at the University of Michigan Medical Center.
"In addition," Dr. Ray said, "the study showed that the longer time that the PSA continues to decline after radiation, the less likely the cancer will recur or spread."
So, it looks like the prospects for my continued post-CK treatment survival from PCa are very promising.
Joined: Nov 2010
Congratulations
It is nice to read about your good results. Probably you could change now the title of the thread to PCa Finally Under control.
Unfortunately there are no other marker yet today that we could use to certify cure. Though, the continuous drops in PSA make your prospects for post-CK treatment survival very promising of a cure.
I wonder if you need still more results to certify your rates. Probably now you could be looking for a comprehensive “cautious programme” to follow up your health as a non cancer patient. My advice is to get a gene profile and the levels of DHT under vigilance.
Kongo stopped being around since his last update, indicating a PSA level under the zero two decimal places (PSA=0.0X ng/ml) but his starting level at CK-treatment was lower than yours.
Best wishes for continued success. Enjoy.
VG
Joined: Mar 2010
Thanks for the suggestions!
Thanks for the suggestions, Vasco.
Not sure what a genetic profile and DHT measurement will do for me at this point but I'll consider it. I've actually noticed that Kongo has been pretty silent about his progress and missed his report of a single digit PSA reading. He had a much better post treatment PSA history than I did and I've posted the specific results just to let others (with a similar history) know that there's hope even if your PSA results are erradict and slow to decline.
I'll continue to post in this thread over time until it looks like I've reached my nadir. Doing this to also give others who have received radiation treatment a longer term outlook on what needs to be done to monitor treatment outcomes. Currently doing semi-annual testing and will probably go to annual testing in the next year or so.
Joined: Mar 2010
PSA Still Dropping
Took another PSA test yesterday which came back at 0.319; about another 1/10th point drop from the test in June. So, all's good!
I've been taking semi-annual tests for the past 2 years and just asked my doc when we can switch to annual testing instead. The way I look at it, as soon as he says we can go "back" to annual testing, that'll mean he that he thinks that I'm essentially "cured."
Of course, we all know that no one can be confident of the cancer NEVER coming back but it will be reassuring to know (when the time comes) that my doc thinks that I'm over the hump.
UPDATE: My doc just told me to do 2 more semi-annual tests next year and, if everything still looks good, go to annual testing after that.
Joined: May 2012
Super
SSW,
I do not come to this Board that often now, since I am not starting anything until late January, but happend by today. Let me be the first to congratulate you and give a high-five to your CK success. The classic RT issue is PSA bouncing around (you know this better than I do).
I would be comfortable with the doctor's proposed six month testing cycle, since a blood draw is pretty easy fare for folks who have been through any form of treatment, and about the cheapest thing an oncologist can do also.
max
Joined: Sep 2010
Congratulations
Wonderful news ont he PSA and moving to once a year testing!
Best wishes and good luck as you move forward!
Joined: Nov 2013
Fantastic!
SSW, that is awesome news, and I wanted to add my voice to the chorus of well wishers.
I raise a glass to you in celebration!!
CC
Joined: Mar 2010
Thanks!
Thanks everyone for the congrats & good wishes. I'm continuing to report my PSA results in order to give a long term perspective to post-radiation recovery as a guide to those who have yet to experience this disease.
After 4 years, I'm in cruise mode right now and I hope it stays that way. A couple more tests and I'll hit the 5 year mark, which is considered statistically significant, when I hope to return to annual PSA testing, just like I was doing before I was forced to become a reluctant "expert" on PCa in order to guide/plan my treatment, which has turned out as well as I could have expected.
Joined: Apr 2009
ssw
Thank you for thinking of others, by letting us know about the success of your experience with cyberknife.
h
Joined: Nov 2010
Another glass of red
I believe that your doctor is enjoying reading our posts when congratulating your outcomes.
I do not care as far as we get a chance to celebrate with a glass of red.
Congratulations
VG
Joined: Mar 2010
Further Update
Just got my June 2015 PSA test result back -- 0.232 -- a drop of 0.087 from December 2014. So, the declining trend is still in force.
The next test will be in December 2015 which will mark my 5th year as a PCa "survivor" following my CK treatment in Sept 2010 based on the biopsy diagnosis in Jan 2010. If the PSA result comes in lower again then, I my RO says I can go back to annual (instead of bi-annual) PSA testing.
The 5th year of PCa survival is touted as a significant benchmark and some would say that I'm "cured" but, as we all know, there is always the possibility of the recurrence of any cancer. But my lower stage at time of diagnosis makes that less likely in my case, as it does for others like me. Here's hoping that that's true.
As before, no noticeable side effects from the CK treatment -- no ED or incontience issues. Still have some frequency and urgency urinary issues which were the original symptoms which prompted the biopsy that led to the PSA diagnosis over 5 years ago, which is being treated w/Flomax and oxybutynin. So not changes in that regard. But, otherwise, I'm living a normal and active life for a man who is about to turn 65 in October.
Good luck and best wishes to all of you who are also still struggling to defeat this disease!!!
Joined: May 2012
Wonderful
SSW,
In the spectrum of stories at the Board that range from wonderful to tragic, this one of yours is about as wonderful as they get !
max
Joined: Nov 2010
The good news
Bring the good news. We love them. Let's CELEBRATE.
XXX
Joined: Mar 2015
Agreed...
...good news for sure. I also will turn 65 in October...perhaps we will have an 'Octoberfest' here on the board!
Joined: Nov 2013
Awesome!
Absolutely GREAT news. Congrats to you, and thank you for the wonderful presence you are to all on this board. Continued good health
CC
Joined: Mar 2010
Approaching a Nadir?
Just took another PSA test yesterday. Reading was .200 -- .032 lower than the last one on 6/2/2015. Since the plot is flattening, it looks like I am nearing a nadir.
A relatively recent report on the long term results of CK treatment yielded the following: "PSA levels fell to a median of 0.12 ng/ml at 5 years (and radiation dose had no impact on median PSA levels post-treatment)."
See: Stereotactic body radiotherapy for localized prostate cancer: disease control and quality of life at 6 years. - PubMed - NCBI
At 5 years/4 months following CK treatment, I'm a bit above the 0.12 median reported by Katz in 2013 but not by much. So, it looks like my results are pretty much on track. From the graphs in the report, it looks like I can expect a further lowering in the next year to 6 years out (the limit of the study) but the graph lacks sufficient definition to determine exactly what levels were reached by the study participants. It would be interesting to find out what the range of PSA levels were reach at 5 and 6 years out.
In any event, while my PSA level could go lower, I would not expect it to fall much more. So, I'm close to (if not already at) my personal nadir and I'm about as "cured" as any PCa patient can expect.
For those of you who are still considering or just recently received CK treatment, I would also like to note Katz's report on the likehihood of 5 yr recurrence was rated at 97% for low-risk (Gleason 6) and 91% for intermediate risk (Gleason 7) and Epic Quality of Life scores for the study group as a whole at almost 100% from "baseline" 5 years out with respect to urinary/bowel control and a generally declining sexual activity score of about 10% from baseline over 5 years.
It's not stated but this decline in sexual QOL may be due to increeased age independent of CK treatment, since the median age of patients looks to have been between 70-74 years old. So, CK may not be entirely to blame for this delcine.
I know from my personal experience w/CK that I have had absolutely NO reduction in urinary and rectal control and my sexual activity level has also declined a bit from age 60-65 but I attribute this entirely to age and not at all to CK. I am just thankful that it has not yet been lost for all time as it probably would have been following surgery.
In any event, I remain convinced that for those men who are diagnosed w/PCa at Gleason 6-7, CK is and remains the absolutely BEST possible treatment for your cancer. It trumps surgery by MILES and, although reported results are similar, it is still better than BT and IMRT/IGRT because of the easy of treatment and better quality of life results.
Joined: Aug 2014
Great report
Must be a big relief; congratulations!
Joined: Apr 2009
poster man for SBRT
Great results..........you are the man..........a great example of success.
Joined: Nov 2010
Closing your PCa patient chapter
Swing
Two years ago I raised the term cure in our exchanged posts. This time the results are more convincing and certify the success. I wonder for your continuous participation in this forum. You could have "close the page" of your history as a PCa patient and just become a survivor and "go for good". I respect your wishes to continue posting, helping the many afflicted with the disease.
Congratulations.
VG
Joined: Jan 2013
Closing the Chapter
Congratulations on your successful outcome.
I echo Vasco's recommendation -> Please consider remaining with us in this forum from time to time to provide guidance and companionship to the existing PCa members, and to those who will inevitably be joining this forum in the future as new PCa members.
Joined: Mar 2010
No Plans to Drop out . . .
Thanks to all of those who have commented about my apparent "cure."
I have no intention of "droping out" of this forum and I will continue to post comments where I think I have something useful to say, as well as to continue to report on my status (good or bad) over time.
As I have in the past, I will continue to recommend CK as an alternative form of treatment, especially to those men who seem too quick to opt for surgery without sufficient knowledge of the risks associated with it and who may not be aware of CK and other alternative forms of treatment.
I believe that I've "informed" at least a few men about the alternative of CK, who chose it over surgery with positive results. That's reason enough for me to continue to be an advocate of CK over surgery for those who are eligible for it.
Best wishes to all!
Joined: Mar 2010
Just another update . . .
So, I took my 1st "annual" PSA test since being treated w/CK back in Sept 2010 a bit early because it coincided w/a variety of other blood tests that I had to take before seeing my PCP in October. The result was 0.137 which was lower again than the .200 result in Jan 2016. So, the trend is continuing to decline 6 years after treatment.
I will probably take another PSA test in December which will be when my annual test for this year would have been actually due. That will be the last test I can take before I will have to switch from UCSF w/Blue Shield back to NorCal Kaiser because my retirement program has decided to drop Blue Shield as a health care provider for retirees because Blue Shield wanted to raise it's rates 10% for the coming year.
FWIW, I was a lifelong member of Kaiser before I decided to switch to UCSF in 2010 because of the lmitied PCa treatment options offered to me by Kaiser back then and I chose UCSF/Blue Shield specificially because that's the only way I could have received CK treatment. Turns out that switch was very fortunate, not only because of getting CK treatment, but also because I got 2 rotator cuff surgeries, a double hernia surgery and 2 spinal/hip steroid injections out of it. So, I got more than my money's worth out of Blue Shield and hopefully I won't need to call on Kaiser for anything as complex or difficult in the coming years.
The change over should take place in Jan 2017 and I'll have to find a new PCP at that time. I may try to hook up w/my old Kaiser PCP when that happens but more than likely her patient roster will be full and I'll have to choose another. We'll see . . .
Joined: Nov 2010
Another Zero
Another Zero, and another celebration.
What are you planning to do this time. Visit Europe and my corner or a trip to Antarctic?
Both are good for memories.
Congrats,
VG
Joined: Mar 2010
Just relief . . .
No celebration, Vasco. Just relief.
Haven't been doing much traveling lately. Actually haven't gotten on a plane for over 5 years. Not afraid -- just don't want to deal with the delays and hassles of "so called" airport security. I'd much rather drive or take a train/boat instead.
However, my GS and I have been talking about taking a trip to Paris or China. Not sure if it'll happen or not.
We'll see . . .
Joined: Apr 2013
good news
I am happy for you and all those who can see that Pca does not necessarily mean and early demise. I m now at 40 months since diagnosis with multiiple wide spread matastases. Vasco mentions "under control". My Pca is under control, which means to me that it is not gone, but is not affecting me or my qaulity of life. So, a cure is not the only way out. Pca can simply go dormant and stay that way. There is always hope. love, swami rakendra
Joined: May 2012
All contribute gifts here....
Rakendra,
Many guys here share important and useful facts and medical information, and you do that as well.
But you also share PERSPECTIVE and truth -- rare things in our world.
max
Joined: Jan 2013
Just Relief
Great news to read.
Enjoy your relief.
Joined: Apr 2009
I remember when you first
I remember when you first posted at the board, and you were very relieved to be part of the blue cross benefit plan, so you could be treated with SBRT, which was not available at Kaiser. UCSF is the best of the best. The ablility to switch plans came at the right time for you.
Good luck with your switch back to Kaiser
Joined: Mar 2010
Good luck, indeed!
It was indeed good luck that I was able to switch to UCSF from Kaiser and to get treated w/CK. There were a lot of things that could have happened to prevent it.
My diagnosis occured in Jan 2010. Did my research in Feb/Mar 2010. Open enrollment was in April 2010 and became effective in July 2010 and I was treated at UCSF in Sep 2010. If I didn't submit the "open enrollment" change in April 2010, I would have had to wait until April 2011 to do so. Might have opted for AS for a year if that happened, but fortunately it didn't happen that way.
Also, Blue Shield only changed its policy on CK/SBRT from "experimental" and (not covered) to "accepted practice" (and covered) in Oct 2009, only a few months before I was diagnosed. So, it was a very tight timeline. If it was still deemed "experimental" when I was diagnosed, I never would have made the switch to Blue Shield and would have had to choose between brachytherapy, surgery or AS under Kaiser or just pay UCSF for it out of pocket ($65k was the estimate). In that case, I probably would have stayed w/Kaiser and paid UCSF for CK out of pocket. So, the change in policy and switch to Blue Shield not only "cured" me but also saved me a lot of $$$
But everything lined up just right for me. Guess it was just meant to be and I'm certainly thankful that it turned out the way it did.
Joined: Nov 2010
Health Insurances and Peace of mind
Your comments regarding the insurances just confirm how you were wise when got a membership, but not many believe and have followed the same steps.
We many times read those posts of guys commenting to be over 65 and fit but for what unbelievable reason it could be, they were stricken by PCa out of the blues. The fact is that we are aging inside without giving it much attention, and then find us in need of more detailed medical care. Insurances are the means for the many to feel peace of mind. However, these wouldn’t accept new members aged over the 65 or cover previously diagnosed illnesses. The insurances policies are expensive and lead many to reject them.
I think US citizens are better prepared to confront a positive diagnosis than Europeans. You care for insurance coverage as prevention so that you are set to get into one earlier in time.
Europeans do not care much. Their national health services providing security free of charge (which systems are so invidious by those whose country hasn’t got one), made them to behave sort of irresponsible. However, one should open their eyes to the negatives in the NHSs. These were created on the basis that it would be economically self-sustainable. Initially, fathers, sons and daughters would pay to get the benefits; then it become the sons, daughters and grandchildren; then they added the great grandchildren to make it sustainable but these could not pay into the fund so that they figure out a way to charge them by increasing the government debts. Now the bill is so high that even the fourth generation of the grandchildren, yet to be born, have been included. They will pay the system and the interests of the debt in years to come. When does the madness stop?
Here is an interesting story of an American who got treated at NHS UK;
http://www.businessinsider.com/an-american-uses-britains-nhs-2015-4
Best,
VG
Joined: Sep 2015
Congratulations
SSW,
Congratulations on your PSA test results. I pray those results will continue. As has been stated, Please stay with us. We all need to hear the sucess stories.
Peace and God Bless
Will
Joined: Jan 2016
Congratulations !!!
All the PSA Test should look like that for all of us !!!!
Joined: Dec 2013
psa still over 1
Hi Swing , posted awhile ago here but I had lost this thread , just found it again and am soooo glad to hear "the rest of the story"!
I'm still over 1 since June 2012 C/K - pre c/k 16 , post c/k low 5's , then 4's for 2 or 3 years , then 1.35 and recently 1.65 .
Called my C/K doctor - Dr. Katz himself! , he says he's seen longer lingering .
Your story encourages me , gonna get another test soon with my fingers crossed , but regardless am so happy for you!
Joined: Mar 2010
Good luck!
Glad my story offers you some encouragement. Your PSA has remained elevated much longer than mine. Hopefully it will also drop below 1 soon. Good luck!
Joined: Mar 2010
PSA Still Going Lower
Haven't logged onto the forum for awhile and just checking in for the 1st time in a month or so.
Had my 1st PSA test in a year and the result was 0.118 -- lower than last year's 0.137. So, it's still dropping and apparently hasn't reached a nadir yet, 7 years since I was treated w/CK.
Also just got my cholesterol tested (again) and it's better than I can ever recall it every being in ALL the years that I have had it tested. All indicators are w/in the "desireable" and even "optimal" ranges which has NEVER happened before. It's always been too high in one way or another before.
Have been on statins forever but I don't think they are responsible for the change.
Believe it is due to a loss of 38# from 196 to 158 over the past 15 months, a reduction in BF from over 20% down to 8.9% as measured hydrostatically, a high protein/high carb/low Gi/low fat diet limited to under 2000 cals/day, heavy weight lifting, body weight exercises and cardio (mainly rowing) 4-5 days a week.
Eating well and working out are now a way of life for me, The only thing I've cut out of my diet entirely are sodas but I cut back substantially on beer, refined sugar/flour and hi-GI/fatty foods. However, I still eat foods that are considered less than desireable. I just eat them w/in the limits of my diet which severly restricts the intake of such food.
Had other blood tests done with similarly good results. So, all's good in terms of health and fitness just shy of 67 years of age. :)
BTW, I just got a "legal" prescription for 5mg daily cialis thru my Medicare Advantage coverage. The "trick" was to get it approved for use to treat my urinary frequency and urgency, which I complained about back in 2010 before my PCa diagnosis and which still plagues me to this day and for which I am also still taking FloMax and oxybuytnin.
However, for those of you who need cialis for ED, it may be possible to claim that you need cialis for urinary control instead. Just don't mention ED or your request will be denied as "not" medically necessary. Worth a try if you can't get it any other way.
Joined: Nov 2010
Cured and healthy.... Wonderful
I am glad for the news and still more for your continuous support in this forum. All of us benefit from your updates. Here is another decrease of the PSA confirming the success of the RT.
I hope that the urinary issue also regulates. This is a fact very common with the age that survivors tend to relate to the PCa treatment, many judging it as the solo cause. Surely you could have permanent scar tissue that stimulates the local nerves producing an active response. But the "age" issue should also be considered and for that there are no ways to normalize.
The anticholinergic Oxybutynin is trying to fake the senses (nerve signaling) so that an anti reaction by the brain is not activated, while the alpha-blocker Flomax relaxes the muscles in the prostate and bladder neck, making it easier to urinate. In such regard, one should think that frequency is more expected than retention. To balance the issue, you could add a medication for retention but probably by just stop taking Flomax you may achieve better results. You can try it during a period or take it intermittently to check the results. After 7 years on the run Flomax could be the culprit in the issue.
Best wishes for continuing good health and hopeful for continuing attendance.
VGama