I had my TURP (Trans Urethral Resection of the Prostate) in October of 2011 at age 65. Subsequent analysis of the material removed showed cancer cells in less than 5% of the material and Gleason graded 3+3=6. I was staged T1a by my urologist.
To say I was shocked when I was told I had the big C, is an understatement. This is nothing new to those on this board who have had been diagnosed with PC. I was now one of the 1 in 6 men who contract prostate cancer.
Initial response from my family was "TAKE IT OUT!" But I decided to find out more about my condition before making any rash decisions. First I spoke with my urologist we discussed many things about my PC. A few things stand out in that meeting with him and my wife who attended. He more or less said that PC was unique for a type of cancer. If I had a cancer tumor in my bladder or kidney, he would take out the tumor. Not so with the prostate. It would have to removed or irradiated beyond repair.
Those options, of course, did not sit well with me. He told me because of my diagnosis I had time and should begin doing my research and see him in a month or so.
And what I found was that PC was a very confusing and over diagnosed and over treated disease. I gathered all my research together and met with my urologist. I asked him about radiation and he told me that he and some other top urologists and radiologists had formed a prostate cancer center here in Phoenix and that the radiologist there was top notch. He referred me to him.
The radiologist met with me and said based on my diagnosis and staging I should do nothing at this time. He recommended AS (Active Surveillance). I went back to my urologist and told him what the radiologist thought, what I had learned in the meantime (specifically the NIH conference on AS that just concluded) and he agreed to do AS with me. He told me to come back in a few months for my initial PSA test after the TURP.
A couple of weeks ago I took the test. When I was on medication for my BPH awaiting the TURP, my PSA was 0.20 My radiologist said that should be doubled due to the effects of the Avodart to 0.40
I took the test a couple of week's ago and it came out 0.60
I asked him if I should get a picture of my prostate before we move forward but he said that would be counter productive since there would be lumps in my prostate due to the TURP. I asked my radiologist about that but he disagreed. But he still said any kind of MRI or color Doppler or whatever would show nothing at my stage.
Just monitor the PSA and DRE (Digital Rectal Examination).
So here we are on the first leg of a long journey. I will be taking PSA tests every three months from here on out. I'll post results as I go along.
Later: I wanted to add a couple of things to my initial post.
Initial conversations with my family centered around removing my prostate right away. Reading that you have to treat 300 PC patients to save 1, I asked my wife, who is a GYN, would she remove 300 uterus's that were suspected of having cancer (in her profession of GYN it's called dysplasia or a per-cancerous condition and needs to be watched - interesting choice of words, huh?) to save one woman. That put the whole thing into perspective for her. [Although Frank may well have read a study or media release with this 300/1 ratio, there is considerable lack of agreement as to what the figure is. All that is agreed is that there is a significant number of men who have had treatment for prostate cancer and have gained no benefit because they were never at risk. One study suggests that more than 800,000 men in the USA are in that position] And that's the problem with this disease and the opinion of the latest AS conference by the NIH (who by the way thought it time to upgrade the semantics and one panelist actually use the word dysplasia to describe early PC discovery) and thoughts of Dr. Meyers who believes a Gleason 6 is not cancer at all. What to call an early stage finding of PC. Or is it PC at all yet? [See leading US pathologist Dr Jonathan Oppenheimer's views here.]
It seems to me and others that the urology field needs to update their semantics instead of scaring the bejeebers out of men like men. So for now, it's up to us to make those decisions. We pray it's the right one. We're not going to get a straight answer from the medical profession at this time. Sometimes I think they are as confused as we are.
A very strange and somewhat disconcerting week with my uro.
On AS since October when first diagnosed. First three month PSA at .6 then had my second three month PSA last week.
My PSA was 3.4 - a six fold increase from three months before. Shocked my uro and me. Did a follow-up two days later and it was 1.9 then two days later 1.8.
The reason for the many tests in two day spans was because I felt there was something else going on and that the PSA readings were suspect.
As it turned out, found out today that I'm having kidney stone problems with blood in my urine. Why my uro didn't think about this at the time of the 3.4 PSA since he knew I had kidney stones - I actually showed him the one I passed just a week before - I don't know. He was about to have me do a bone scan when I said let's redo the PSA.
That's the reason why each and every one of us has to take command of our health and not relinquish it totally to the medical profession.
Anyway, he put me on cipro today and said to do another PSA after all of this calms down and create a strategy to deal with the stones.
So….once more into the breach. Another update in four weeks or so to find out what my true PSA is at this time.
Found an oncologist to round out my team. He's an older gent out of retirement. We discussed my path report - t1a - and he was of the opinion that I should take "definitive action". His reason - I was a healthy and young for my age of 65 and that I would come through the operation or radiation fine.
I retorted with that's the very reason why I didn't want to take definitive action at this and wanted to stay on AS for now. I am a healthy and a young 65 and also sexually active and don't want to take the chance of wearing a diaper for the next untold years.
He did order the scans I wanted and that my uro felt was unnecessary. That conflicts with my uro's initial assessment that I take the prostate out. If scans unnecessary and will not show anything why the rush to take out the prostate?
Anyway, I'm doing the scans now. CT, Bone, and color Doppler ultrasound. I'll post results when I get them.
The oncologist did take my PSA while I was there. It came out .8 but even with that low score I still don't believe this is accurate because I had sex that AM and had taken ibuprofen over the last few days. Besides, I'm still having symptoms of bladder stones. Which I will see my uro about this Friday.
I'm hoping that repeated color Doppler ultrasounds - if necessary - would supplant the need for biopsies if my PSA starts to rise alarmingly.
Yes, I now that scans - if something is found to be suspicious - can not replace grading if anything is found but I am not keen on doing fishing expeditions if my PSA rises. I feel if there is something there, it should show up enough that the biopsy can be more targeted. If not, there probably is another reason for the PSA rise.
This is of course depends on the belief that if something is there and can't be seen, it should not be dangerous at that time.
I may be wrong but I get conflicting opinion about this. This disease sucks.
I know my experience so far pails in comparison with those who have life-threatening PC, but this diary of sorts might help those just staring out.
Had the three scans done - CAT, color Doppler ultrasound and bone scan. Spoke with the oncologist yesterday over the phone and he said nothing was suspicious on the scans. He did recommend that I speak with my radiologist and ask for an MRI. My thoughts and he confirmed what I read about an MRI. Most dangerous PC is on the outer edge of the prostate and that the scans can not do a good job of detecting anything there. A special kind of MRI that the radiologist will know about will clear that issue.
I have a F2F with the oncologist in a couple of weeks to go over the details of the scan. I have a good feeling about he and his partner and he even stated that he was an objective observer and had no agenda to push like my uro or radiologist - knows his place on my team.
Found the right guy.
Going to call my radiologist and set up and appointment to go over the scans with him and discuss having the MRI. Whatever his opinion, I still want it like I did the scans.
It's my life.
Met with my oncologist and radiologist on my three scan results.
Spoke to my radiologist about an MRI and he said that with my low risk condition, it was not necessary and would prove nothing at this time. If my PSA starts to rise, I will change his mind or have my oncologist schedule it.
Oncologist wants to do another bone scan in six months. Will do. Meantime, having my PSA checked every 3 months and only if I am having no symptoms of prostatitis or kidney stones. So not to have the crazy PSA readings I had a month or so ago.
In six months I'll ask him for the more arcane PSA tests just in case.
My Active Survailence continues. My every three month PSA test came in at .8 today. So far so good.
Had my three month PSA test and it came out as 0.6 - that is two-tenths of a percent lower than the last test. Started riding my bike - ten miles a day - staying off red meat as much as I can. Even started cooking some vegan meals.
To sum up --- I assume that whatever I had - Cleason 6 (3+3) and t1a - less than 5% of material from my TURP showing cancer (if that's what it was) may have been taken out. The ultrasound and bone scan of several moths ago showed nothing and my radiologist told me to just go home and not worth doing any MRIs. He's under the opinion that my diagnosis was little to be concerned about. [There is always a possibility of spontaneous regression. It is difficult to even begin to estimate the probability of this occurring. However it is worth noting that between 25% and 33% of men in AS studies do not have a second or subsequent positive biopsy. This may be because of the "hit and miss" nature of biopsy procedures. There is a discussion on spontaneous regression on the Yana Forum which may be of interest. Dr Charles "Snuffy" Myers discusses this issue on his site at Does Cancer Ever Disappear?]
Uro wants to extend PSA test to every four months.
Compared to many of the men on this board who are REALLY facing a battle, I feel lucky and will more than happy to give any of them my full support. I have answered a few questions already helping where I can.
Did my 4 month PSA test. Came back at 0.5 – that's a drop of one tenth of one percent from last test. It keeps going down from initial diagnosis. My DRE by my primary care doc was normal. Crediting reducing my intake of red meat and 5 miles a day 5 times a week of bike riding.
I'll ask my URO if he wants to test every 6 months now.
I must be a poster child for the T1a grade of PC based on a TURP.
A personal opinion. Do I have cancer? Or did I have cancer? Who knows? But the word cancer used with those of my grade needs to be seriously reconsidered by the URO establishment.
As I posted before, my wife is an OB-GYN and when she receives a lab report on a patient from PAP smear and it comes back with abnormal cells – not cancerous - her profession does not recommend ripping the uterus out. They say the patient has displaiseur (incorrect spelling) and just monitor the patient in the future – Active Surveillance?
So, it's gonna take some time for the URO community to come up with another name for the T1A condition. My .02 cents.
Though I knew my PSA score, I did not see my uro until today. He was on vacation. We agreed to keep the every 4 month schedule for the PSA test. But he did say something that bothered me. When I started AS he told me that a biopsy was not necessary unless my PSA started to rise. Today he said that on AS, a biopsy should be done every 12 to 18 months. With such a low PSA - and dropping - I can't see why a biopsy is necessary. I would think that if my PSA stayed this low, why run the risk of a biopsy. Though only a biopsy can say definitely if one has prostate cancer, there are non-invasive test like a color Doppler ultrasound that could indicate whether a biopsy is needed.
Went to my onclogist today. Third member of my team.
Total PSA = 0.5
Free PSA = 45%
Agreed with Uro results last month.
PSA back to where it was before my TURP and resulting diagnosis of material taken out.
Went to my URO today for my 4 month check up.
PSA 0.6 & no DRE done. Was done at last visit.
Nothing else to report. Everything normal.
Agree to do PSA every six months now. Will do KUB for next visit to keep a look-see on my kidney stones.
Met with my oncologist today. Third member of my team. He's a check on the uro and radiation docs. PSA is 0.5 and free PSA is 40%. No change from last testing. Asked him about doing another color Doppler ultrasound. Had my first two years ago. He didn't think it necessary but we'll revisit it next time.
I know this sounds like overkill with the three doc - but what the heck - it's my life I'm trying to protect until our wonderful medical profession figures out this beast called PCa and how to rid it w/o side effects. Otherwise, exercising and watching my diet.
I'm a prime case, I guess, for incidental finding of PCa. Would never have known about my Gleason 6 if I never had the TURP.
Went to the Uro today. No change in PSA and kidney stones. PSA is .6 so I asked him with a Gleason 6, no symptoms and a stable very low PSA did he want to change his view from "You have prostate cancer" when we started this journey two and half years ago after my TURP biopsy. Now he said "You have the possibility of prostate cancer".
Hmmm...I have the possibility of being hit by a truck too. Told him in a year or two will do non-invasive look-see like color Doppler and such to compare with tests done before.
Seeing my Onco in a few months. Doing six month check ups with Uro now. Wouldn't be doing anything different at my age, anyway.
Met with my Onco today. I see him every six months along with my Uro for a PSA check. My PSA was basically unchanged at .6 with no sympthoms.
Met with my URO today. PSA 0.7. PSA range from time of diagnosis 0.5 to 0.8 - PSA stable. Refused biopy at this time and URO agreed.
Met with my Onco today. PSA .6 - no change. Turned 68 last week, 3 years since t1a Gleason 6 after TURP. Would never had known I had prostate cancer if not for the TURP. Don't even know if I have now.
Went to my URO today for my PSA test results. SHOCKED! PSA was 2.1 - quadrupled over 4 months. What to do? Will retest on Monday. Also made an appt with my new ONCO referred to him by my retiring ONCO. Will also do PSA test with him and compare the two.
Have disappointment with my URO and plan on switching from him. He has three strikes against him. He's out.
FIRST STRIKE: After TURP I asked him if the material was checked for any abnormality. He said everything was clear. I asked for the pathology report. He asked his assistant. She pulled it and her face went white. She asked the doc to take a look and he was shocked to see my pathology report showed Gleason 6 - 3+3. He didn't check before meeting with me and if I didn't ask would have left thinking everything was OK. My PSA was .5 and negative DRE at that at point.
SECOND STRIKE: Went for my PSA a year later, I think. Passed a stone and told him so. See my previous posts. Showed it to him. PSA was above 3. He didn't see the correlation between the two. Wanted to do biopsies. I said no. Took two more tests asked by me over two weeks and the PSA dropped to .8 and stayed in between .5 and .7 for two years until now.
THIRD STRIKE: Went in today and PSA was 2.1. Didn't say let's do a DRE. You would think he would want to have a look-see and ascertain anything abnormal. I found that very strange.
End result: I don't think this man's head is in the game.
When I talk to my new ONCO on Monday I will request he order a full non-evasive set of scans - Ultrasound, Color-Doppler, latest MRIs like MRI with coil etc. All were done including bone scan - except for MRI which my radiologist didn't think was necessary - soon after my initial diagnosis. This will give me a baseline for the new tests.
I'll post results of two PSAs later in the week.
Since last post, I scheduled an appointment with a new URO and met my new ONCO. A fairly young doc who holds both an MD and DO and comes to my ONCO office from the Cleveland Clinic. I guess that's a pretty good pedigree. My new URO gets five stars consistently across the board.
I took two new PSA tests a few days ago. One from the URO and one from the ONCO. Both came out 1.8 down from 2.1 but this was before I started on the antibiotics. I was thinking I had an infection that drove up the PSA but wasn't sure so I started the antibiotics. No more pressing urination and pressure to pee. I'm feeling fine now but the thought crossed my mind thinks I might be passing a stone again. That has quadrupled my PSA temporarily before.
I see my URO in a couple of weeks and we will do another PSA test then. If it's back under 1.0 then something irritated my system. At that time I will ask him to do an ultrasound, color Doppler and MRI with coil and enhancement.
It's been three years since initial diagnosis and I should have some kind of look-see and compare it to the color Doppler and ultrasound I had at initial diagnosis. I know that MRIs can give false readings but at least I will have a better picture of what's going on with my prostate. I'm hoping my PSA returns to under 1.0 and I can continue with my AS and if the MRIs show something suspicious, we can target that area for biopsies if I wish.
That's my thinking for now.
As I stated in my previous post - I fired my URO. I met with my new one and I can see why he has a 5 Star rating from patients. He has state of the art knowledge and access to state of the art diagnostic and treatment tools.
He looked at my current symptoms and surmised that I had a bout of my recurring prostatitis. He put me on a two-month regime of Bactrim and I will take another PSA test after that time. If it goes back to under 1.0 then we know the rise was due to prostatitis. If not, he has access to the new MRI diagnosis tool at M.D. Anderson Cancer Center here in Phoenix. I don't remember the name of it but that gave me great relief that I am working with him. My last URO would have gone straight to a fishing expedition biopsy.
He told me that Anderson has a new non-invasive MRI that replaces the MRI with coil and if my PSA still says above 1.0 we would go that route and have a look-see. If a biopsy is needed, it can be done right on he MRI table and targeted to that area.
That's the way to go.
So now I have prior Cleveland clinic ONCO, and an Anderson URO and access to radiological tools.
Had my PSA checked in anticipation of my appointment with my new URO in a couple of weeks. I started with him when my PSA jumped to 2.1 over a period of a few months. We went over my history and said since I have had bouts of prostatitis over the years, we should assume that could be the reason for the PSA jump and treat that first. Put me on Bactrim and it seems to have helped alleviate the symptoms.
I've also been taking 800mg of Ibuprofen at night and am on Cialis. Both in hopes would reduce the irritation and swelling of my prostate. I didn't want to take anything else like Flomax because it might affect the PSA test. Needed a clean test to discount PC. If it went back down to its normal range, we'd know it was from prostatitis or even BPH even though I had a TURP three years ago.
PSA test results came back at 0.6 – the same over the last three plus years. I was very relieved.
When I meet with him we will decide what to do next. We discussed having a non-invasive look–see at my prostate with the new sensitive MRI where he is a doctor at the MD Anderson Center. Its results are just as good if not better than the MRI with coil. We'll also talk about Flomax, etc to help my flow and perhaps be able to sleep entirely through the night.
Went to my new URO today. Confirmed that the rapid rise in my PSA a few months ago was chronic prostatitis. Current PSA is back to .6
I told him I was taking 800 MG of Ibuprofen and daily Cialis to help in my urine flow. I will drop the Ibuprofen, keep the Cialis and move to Flomax.
I will take the PHI-4K PSA test next week. It will give me my percent risk for aggressive PCa and I will meet with him at his practice at MD Anderson for the T-3 MRI to have a good look-see. If all these tests are clear and don't bring up anything suspicious, I should be good to go for another few years with only periodic PSA tests.
If I were still with my old URO he would have gone straight to a biopsy with all the risks because of my rapid rise in PSA. He never considered my history of chronic prostatitis. And this guy is supposed to be one of the top UROs in Phoenix. Not in my book.
I'm glad I left him. It proves that we do our research and be in control of our own health decisions.
It might seem that I am doing overkill on a very low risk PCa but it's my life and decided to follow what I have read in the literature as to tracking PCa on Active Surveillance.
Would never have found the Gleason 6 PCa if not for my TURP. But it was found so it has to be dealt with. I didn't diagnose this - the medical profession did and they have the responsibility to clear this up. No excuses.
Met with my URO yesterday at MD Anderson. Scheduled my T3 MRI there.
On the side, the lab or whoever refused to do the 4K test because I was already diagnosed with PC. Go figure.
Had my T3 MRI yesterday.
The MRI was intresting. Since it was a T3, the coil was placed on my stomach and not inside my prostate. The exam lasted about 25 minutes.
Will meet with my URO tommorow to discuss results.
Before I could call MD Anderson to make an appointment with my URO for a follow up on the T3 MRI, they called me. Probably not good. Anyway, they fit me in today and I saw my URO for the MRI results.
A lesion was found about 1 centimeter in size near the peripheral of the prostate but contained inside the nodule. The doc said, "Well you wanted to have a look-see. I suggest we go in and do the biopsy and find out what it is."
Will be going in for a biopsy of that lesion using the T3 MRI to target that only and see if it is cancerous. I know had cancerous material of Gleason 6 when my TURP was done so hopefully if a biopsy shows cancer, it's going to be no more than Gleason 6. My URO believes that with such a low PSA of .6 and holding steady of the last three years he would be very surprised if the lesion is aggressive cancer.
I am so thankful that I had access to the T3 MRI. It will save me the discomfort and danger of having a biopsy fishing expedition.
The journey continues.
Two days ago I had my biopsy at MD Anderson in Phoenix based on the MRI results. They targeted the lesion that was found. It was a quite simple and really painless procedure. Uncomfortable at some points but painless. I was pretty impressed.
I was placed back in the T3 MRI and used it to guide the biopsy of the lesion. I took an anti-biotic one hour before and a couple of valiums and they gave me a shot of another anti-biotic. Dr. Chang, the head radiologist came in and we talked and answered my questions and my wife's who accompanied me while the Valium and antibiotics took affect. I was very impressed with him and knew I was in good hands.
After being placed in the MRI, I was given a local. After awhile they went on with the procedure. The only real discomfort was when they inserted the biopsy needle – not pain, just a freezing sensation. Then they took two samples. Heard the clicks but felt nothing.
I think the whole procedure took about 30 to 45 minutes while my wife waited.
I should get the biopsy report in a few days.
Expecting one of three things according to my URO:
A negative biopsy – probably scar tissue from my TURP three years ago or my chronic prostatitis
Cancer but Gleason Grade 6 as I was formally graded after my TURP.
Higher grade cancer.
It will be interesting to see what the outcome is since I have such a low PSA – 0.06 – and has held under 1. 0 all my life - not counting the prostatitis and kidney stone attacks that raise my PSA periodically. If it is higher grade cancer, I would be an exception to the known literature.
I'll post when I get the biopsy results.
My URO called. The biopsy of the lesion was negative. There is no cancer detected in my prostate as far as the T3 MRI can find. The lesion was most probably scar tissue from the TURP I had three years ago. My URO said that the TURP probably took out any Gleason 6 in that area – or whatever that was. (Sorry to be snarky - but it's been a frustrating experience)
Will now do a regular 6-month PSA check. As I've reported before, my PSA has never been over 1.0
Though my PC experience pales in comparison to the men here, my experience could act as an object lesson of this lousy disease and the many different ways the PSA could change based on one's individual prostate. Perhaps my experience and the path I took to track my Gleason 6 can spare some men and their family of the worrisome anxiety and wondering if you were doing the right thing on AS with a low level disease that we seem to know little about.
From initial diagnosis of PC after my TURP and the first URO ready to take it out, to the three year journey of PSA scores going up then down because of my health history that had nothing to do with PC, to using my research and finding the latest technology to put my mind finally at rest.
LESSON – you are your own doctor in this disease. Do your own studies and find the best care possible. If you find yourself in my PC position and would like to talk, please feel free to contact me.
Signing off until my periodic PSA tests gives me a red flag. All my best to the courageous men here.
Frank's e-mail address is: firstname.lastname@example.org