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Posted 4/23/2016 4:15 AM (GMT -5)
Well, i guess you should do MRI whole abdomen first as soon as possible. It will givr clear idea regarding volume of tumor if there is.some times many cancers and that too agressive have been seen in PSA below 4. So you should surely do MRI and then c whether u require biopsy to do or not.Good luck
Posted 4/23/2016 10:39 AM (GMT -5)
bump for edit
Posted 4/23/2016 11:31 AM (GMT -5)
As you get ready for biopsy, here's a few things about mine that might be helpful:

They gave me a scrip for Cipro to take the night before and the morning of. Also, an enema to be used that morning. The time of, the nurse came in, verified my history, and said, "I see you're allergic to penicillin" When I acknowledged that, she said, "ok, be right back". She came back with a loaded syringe and as I rolled up my sleeve she smiled and said, "nope, come over here and drop trou". THAT hurt the most, and was sore for a week.

The biopsy itself was almost a non event. Drop trou, lay on my side on the table with my butt hanging over the edge. Doc came in, and in went the ultrasound probe. I don't think he lubed it. He said he'd be injecting some lidocaine (ouch), the he said you'll hear 12 little snaps. I think I felt the last couple. Told me to drink lots of water, and be prepared to pass some blood clots.

The first clot blocked things up at first, but eventually passed. Clots for 2-3 days. Ejaculate bloody (first time was pretty red, then gradually turned black over the next 3 weeks. Results in 5 days.
Posted 4/25/2016 12:32 PM (GMT -5)
Ok Bzolidat. In the third week of March,I went to my primary dr. for annual check up. Did the complete blood work up before. I was experiencing extreme edema in my legs and extreme fatigue. Dr ordered a sleep study. Also said that my PSA was in normal range. Didn't question it. Then dr. did the DRE and said that it felt unusual. Thought he could feel a "bump" and that it felt unusually firm. I talked to him about my urinary difficulties so he said he would refer me to a uro dr. So now we are checking for sleep apnea,for the edema. Dr did an EKG there in his office which was normal. So I go to the sleep dr. and long story short I have severe sleep apnea. Get a CPAP machine and hopefully this corrects the edema. Helped with the extreme fatigue but not the edema. Had my appointment with uro moved up. In the mean time went for a echo on my heart that showed Grade 1 left ventricular diastolic dysfunction. This could be a cause for the edema. At this time my mind was on my heart not PC. After the echo Dr. did more blood work to show heart dysfunction or damage which came back neg. No heart issues but still had bad edema. By this time I'm searching for causes of edema because it just wasn't getting better. Found that after ruling out pulmanary issues, heart issues the only other thing that could cause edema was maybe pelvic tumor.Now I'm getting concerned about that possibility. I go to the uro dr. He does the DRE and feels the same thing the primary felt but was concerned about the edema. So he ordered a CT scan. and new blood work with PSA and fPSA% and urine test. He told me that after the CT he would do a cystoscopy. He showed me some happy face chart that showed my odds of cancer. By this time I'm having overload of info coming at me. We are now talking PC cancer! I get the blood work done while my uro dr. takes a weeks vacation. I am able to see my blood results posted to Mychart on the computer, and see PSA -3.46 fpsa-.26 and the ratio 7.6 %. From what my uro had said to me I knew that 3.5 and .26 were borderline according to his standards. But that 7.6 number and the abnormal DRE had me and still has me freaked out.At this time am I supposed to know anything about the protocal for diagnosing PC? I hadn't even heard of a cystoscopy let alone how to say it or what it was.So yes Bozolidat, I wasn't very well versed on the subject of PC and PSA .DRE. fPSA 4.0 3.5 cystoscopy biopsy normal not normal high grade cancer ,low grade cancer, etc ,etc,etc. I am trying to learn as much as I can about this. Have I read any books on PC by an expert? Seriously.That's why I'm here. I've been through this with duodenal cancer and I can tell you all about that. I know margines and cancer grading ,adenomas,villious adenoma tubularvillous adenoma,adenocarcinoma. "the whipple procedure" do you know what that is? Did you know you have a duodenum? That's the top third of yor small intestine if you don't. I can tell you about pyloric cancer and bile duct cancer and resection and % of reccurance. I have yearly endoscopy's and they are always cutting something out and doing biopsy.If you ever need to know about duodenal cancer ,God forbid,I can help with that, I've been through it. I live in a town of 30,000. Not a big city. I know from what I've been through and that I am my best advocate.This has all come at me in about one month. Pretty overwhelming. I think I'll just try and relax now and plan on calling my Dr. to arrange a biopsy.And if he poo poo's that then I'll just go somewhere else. I know when I'm getting the brush off and that I need to be proactive. That's just what I've been doing. Thanks for the response. Mark
Posted 4/25/2016 1:07 PM (GMT -5)
Artist Mark,

Just so you know, next to each person's post, there's a thumbs down icon you can click on if you want to. It will block all posts from that person. I use it sparingly for the few members who make disparaging comments, make ad hominem attacks, or just write Gibberish (a language I never learned). I've found that it makes my time on this site a lot more pleasant and productive.

- Allen
Posted 4/25/2016 4:37 PM (GMT -5)
Thanks Allen
Posted 6/2/2016 1:09 PM (GMT -5)
Well, had my biopsy yesterday. I survived. Most interesting of conversation while on the table. Asked Dr. why fPSA ratio was considered less significant under 4.0 His statement, "when they did the clinical trial they only included those men in the 4.0 -10.0 range. So "clinically" speaking <4.0 not "clinically" significant. Doctors always seem to make you read between the lines. Basically I took that to mean it was significant? Anyways, have no real symptoms this morning and feel good and back to work. Doc. did show told me he saw some dark spots on the ultrasound and that he biopsied those. 12 pokes in the prostrate and an accidental prick in the butt that made me jump! Results in 3-4 days. Concerned with the dark spots though. Thanks Mark
Posted 6/2/2016 1:57 PM (GMT -5)
Mark:

I've been following your thread.
Good luck. Hoping for good results.

Mel
Posted 6/2/2016 3:32 PM (GMT -5)
Mark,

Hang in there dude, we all know how overwhelming this can all be, but we're all here to help in any way that we can. You are not alone. cool You are taking the right steps so far, let's see what the standard TRUS biopsy results have to say first. God bless.
Posted 6/2/2016 7:23 PM (GMT -5)
They only tested %freePSA in men whose PSA was 4-10, and looked at how well it predicted biopsy outcomes. So it has only been validated for that PSA range. It's called "invalid" on your PSA (not insignificant) because no one knows how to interpret a %freePSA for PSAs outside of that range.

I hope they found nothing.

- Allen
Posted 6/3/2016 2:44 AM (GMT -5)
Mark,
You have decided to have a biopsy and with an abnormal DRE it's the right decision. For me it was a painless affair except for the snapping of what felt like a rubber band each time a core was taken; I was drinking a beer an hour after the biopsy! Lol.
Peace of mind and all the best to you..
Bill
Posted 6/3/2016 2:50 AM (GMT -5)
Mark,
I'm late to the party!! Sorry..
Posted 6/3/2016 6:46 AM (GMT -5)
I would recommend getting a biopsy. Yes, it is not going to be on anyone's top ten list, but it could save your life. Please know not all prostate cancers are slow growing, or raise your PSA. I pray yours is not cancer, but why take the chance?

I just turned 59. In January of this year my PSA went from 3.3 a year age to 4.7. The digital exam showed a hard ridge. (Past years showed an enlarged prostate that the Dr. stated was normal for my age and not a concern with my low PSA.). I opted to have a biopsy. That may of saved my life (still to soon to know for sure). Biopsy showed advanced prostate cancer, Gleason 8 (4+4). Surgery April 18, 2016 where a lymph node that was "100% cancer" was removed along with my prostate which was 73 grams. Pathology showed T3N1, ductal, stage 4 D1. All of the doctors stated that I had this cancer for years, even with low (<3.5) PSA. Just started hormonal treatment this week and will start radiation as soon as I get bladder control back, or as dictated by the cancer. While I plan on being here for years, I wish I found it sooner before it was advanced.
Posted 6/3/2016 6:52 AM (GMT -5)
Good luck Mark. I too have been following this thread. Glad you had the biopsy.
Posted 6/3/2016 10:41 AM (GMT -5)
Found a chart about fPSA and lower PSA and the probability with age ,PSA ,fPSA ratio. http://www.lifeextension.com/Protocols/Cancer/Prostate-Cancer/Page-07 Thanks Tim I hope they don't find anything either,but if it is there I don't want them to miss it. One thing about all this and with my other surgery for duodenal tumor is, I find it very interesting to do the research. It keeps me busy and I like to know what the heck I'm up against. I am able to see that there are reasons not to panic and it is valuable for me to know what questions to ask when I'm with the Dr. This group has been a tremendous help and encouragement to me. Thanks for all the input from everyone. I'll keep you posted Mark
Posted 6/3/2016 12:03 PM (GMT -5)
Dr. Who. thanks for the info. As you are my age (59 in late Dec.) and your prior screening sounds alot like mine. PSA raising,2.6 then 3.5 a little over a year later, dr stated at the DRE that he felt a hard ridge but my PSA was "normal". I'm just curious if you had other symptoms at the time. I have been telling my dr. for the past couple of years that I was experiencing urinary problems and it just went right over his head until this year I was persistent about it. I really believe in health screening. When I turned 50 my wife nagged me for a year that I should get a colonoscopy and I drug my feet. Long story short at 51 I relented and scheduled and appointment with the gastro dr. When I filled out the questionnaire one of the questions was do you have acid reflux (GERD). I have had that all my life. Because of that the dr wanted to do an endoscopy. The colonoscopy showed nothing but the endoscopy found a 5cm x 3cm tumor in my small intestine. I had no symptoms. The GERD was unrelated. 3 months later I was at Virginia Mason hospital ( Seattle) for a 10 day stay following surgery. I believe that whole chain of events saved my life. (Always listen to a nagging wife!) So now I stay diligent about my health. Mark
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Posted 6/3/2016 7:38 PM (GMT -5)
Biopsy results. Left lateral base : Prostatic glandular tissue with small focus atypical glands... LEFT LATERAL MID: Prostatic adenocarcinoma.. gleason 7/10 (3+4) .. 2/2 cores.. tumor involes 60% prostatic tumor..perineural invasion present....LEFT APEX: Benign....RIGHT LATERAL BASE: adenocarcinoma..Gleason score 9/10 (4+5)..2/2 cores...30% involved Perineural present...RIGHT LATERAL MID:..adenocarcinoma..Gleason score 9/10 (4+5)..2/2 cores..30% involved..Perineural not identified.....RIGHT APEX:..adenocarcinoma..Gleason score 9/10..(5+4)..2/2 cores..70% involved..perineural not identified....so,what to do now... DID NOT EXPECT THIS! Mark
Posted 6/3/2016 7:49 PM (GMT -5)
OK, lets' try to summarize.....

8/12 cores positive

2 are 3+4, 4 are 4+5, 2 are 5+4.

The standard protocol at this level would be to start on ADT right away, and then get your cores sent off to either bostwick or epstein for confirmation.

After that, throw the kitchen sink at it.

Best of luck to you.
Posted 6/3/2016 8:51 PM (GMT -5)
I'm sorry to hear that disappointing biopsy result. I'm sure you are reeling. Consider psychotherapy and a support group -- it helped me a lot.

As halbert said, get it confirmed by Bostwick or Epstein.

The next step is a bone scan and CT to make sure it hasn't metastasized already. After that, you can start on hormone therapy, which can slow progression and give you time to breathe.

Assuming there are no mets, this is classified as "very high risk" by NCCN. That means that it will be hard, but not necessarily impossible, to cure. As halbert said, throw everything at it. By everything, I mean:
1- hormone therapy, starting 2 months before radiation
2- whole pelvic external beam radiation
3- brachytherapy boost to the prostate
4 - chemotherapy with docetaxel (Taxotere) or cabazitaxel (Jevtana)(+carboplatin worth considering)

It may also be possible to get one of the advanced hormonal agents (like Zytiga, Xtandi, ARN-509) that are now in clinical trials for neoadjuvant (before radiation) pre-treatment.

Seattle has some great cancer centers that offer some of the most advanced therapies and are doing clinical trials. Please keep in touch as you go through this unwanted journey.

- Allen
Posted 6/3/2016 10:06 PM (GMT -5)
Ok .. Who are Bostwick or Epstein and how do I do that? My dr didn't even say anything about bone scan and I also already had a ct scan. Wouldn't surgery be an option? Is radiation the better treatment? My dr talked about radiation and seed radiation. Told me that the surgery would be difficult with my weight. I told him I can loose weight and he said I probably couldn't loose enough in time but he could give me a shot to slow it down.I am going to check Spokane Wa. for a urologist and plan to contact Virginia Mason. Made an appointment with my dr here in Walla walla and they scheduled me for a face to face on July 14th. That seems like a long way out. Shouldn't things be moving faster than that? I just want this out and the sooner the better. Thanks Mark
Posted 6/3/2016 11:43 PM (GMT -5)
Mark,
Please slow down and regroup. Go to a pistol or
trap range and relieve some of your frustrations; a cold beer or 3 afterwards helps also. Nothing will be done as quick as you want it to!
First: Review the last few posts and get it done;
I., Have your slides sent off to 1 of the 2 experts listed. It is not unusual to find different results and it is possible that you don't have any Gleason 9 cores. At the same time have a bone scan done--simple.
Second: Make an appointment with a radiologist and see what he recommends as a course of treatment. Surgery isn't even an option based on what your dr told you..Yeah, you may be able to find a surgeon "to get it out" but you would need radiation anyway!! Doesn't make sense to me to have to undergo 2 treatments along with the side effects of each!!
Tall Allen seems to have laid out a good plan that should work best. The hormone treatment prior to radiation is to shrink the prostate some.
I am not familiar with when to start chemo or new hormone drugs. All I know is that initially I was on casodex and then Lupron. I do have a friend that Lupron did not stop his rising PSA after a period of time and xtandi did.
Stay cool and all the best to you!
Bill
Posted 6/4/2016 12:01 AM (GMT -5)
Mark, Yes, that path report was certainly a shock for you and all of us who been following this thread.

Gunfighter has some good, simple advice. I'm not a gun lover, but I might do as he suggests if I were you...you need to let out some of the emotion that has to come with this report.

His other advice is also well taken, as you need multiple confirmations from respected labs of those biopsy slides.

Other folks have gotten result like yours, and are here and elsewhere offering advice, many years later. Please keep asking for feedback and informing us of your decisions and happenings.
Posted 6/4/2016 2:34 AM (GMT -5)
Let me address your questions if I can;

Who are Bostwick or Epstein and how do I do that?

Read the sticky for the newly diagnosed - you'll see links to their websites there. They are two expert prostate pathologists who run pathology labs that specialize in reading prostate biopsy specimens (other labs don't). Just tell the Uro who did your biopsy to send the slides to Epstein or Bostwick (pick one). It might run you about$250 out of pocket if your insurance refuses.

"My dr didn't even say anything about bone scan and I also already had a ct scan."

You should have one to rule out that it has already spread to distant locations. If it has, it is futile to put you through radiation therapy (hormone therapy + chemo would be a better option if there are known metastases.) It wouldn't hurt to get a second opinion on the CT scan of the pelvic lymph nodes.

Wouldn't surgery be an option? Is radiation the better treatment? ...I just want this out and the sooner the better.

Based on the numbers, surgery is vastly inferior to radiation in cases like yours. Surgery can only cut out what's in the capsule and nothing outside -- only radiation can reach it there. Your reaction "I just want it out now" is very typical, but it is not the best route for you. With your Gleason 5s, I'd also worry about spreading the cancer with the surgical equipment - probably not, but why take the risk?

"My dr talked about radiation and seed radiation."

Right. They combine external beam radiation and brachytherapy. One kind of brachytherapy is commonly called seeds. There's another kind called high dose rate (HDR) brachytherapy. They can use either kind. Seattle is known as a world center for seeds - a lot of area brachytherapists were part of a group at UW Seattle/Hutchinson that developed the techniques widely used today.

...Walla walla and they scheduled me for a face to face on July 14th. That seems like a long way out. Shouldn't things be moving faster than that?

A couple of months probably won't make a difference. But, after you've had a bone scan (it has to be after), I think it would be good for your own peace of mind to get started with Casodex and/or a Lupron shot. That should arrest any further development for now, and you'll need it anyway in preparation for the radiation therapy.

The big name brachytherapist at UW Seattle is Kent Wallner- (I think he's still there). You can call his office on Monday to check. Celestia Higano is a big name in medical oncology there, and can help with the chemo. If you decide to go for the combo therapy, you can probably get the time-consuming external beam part of the treatment done locally, but I think you'll want to hear what some of the top doctors at UWSeattle have to say first. I don't know the doctors at Virginia Mason. I know a couple at Swedish.

- Allen
Posted 6/4/2016 6:27 AM (GMT -5)
Mark, Mr. Tall Allen has answered your basic questions. The reason you want confirmation on your biopsy is there is a difference between how 4+5 and 5+4 are handled.

There are guys in this forum who got hammered like you, and are now years out from treatment and doing well. Listen to what they are telling you. Get to the very best doctors and center you can find. As TA says, there are some great docs in Seattle who are doing cutting edge treatments for PC. Those are the ones you want on your side.

And, as gunfighter says, try to settle down. You've been hit by a train. Relaxing and getting ready for the fight to come is the next step. Somehow, find a way to let your rational brain get involved in the process. As has been said, surgery in your situation is not the standard of care.

You have the weekend, take advantage of it. Start making calls on Monday.
Posted 6/4/2016 1:26 PM (GMT -5)
My PSA was 4.5 in 2014. During a DRE my doc felt a bump and immediately scheduled a biopsy. Results - PC. I would not wait. You may get lucky and have a low Gleason. Good luck.
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