HealingWell
Search Close Search
☰

44 male just diagnosed prostate cancer

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/24/2013 9:54 AM (GMT 0)
Hi guys. My name is David and I am terrified. I've been on testopel for low t for 18 months. My last test showed a rise in PSA 2.97 I believe is my number. I had a biopsy and 4 of 12 were positive for cancer. I go Monday for a full body scan and Pelvic CT. I've had a testicular dull ache for as long as I can remember, and I attributed my lower back pain from just being out of shape. But it seems that was probably a symptom. Can anyone offer advice on my situation. I've not been given any kind of Gleason scores yet. Maybe he is waiting on my ct and mri. Thanks
Posted 10/24/2013 10:38 AM (GMT 0)
Hi David, Sorry you have to be here, but you found the right place. Without a Gleason score it's tough to say much at this time. Please read the "newly diagnosed" thread at the top of the page. It's full of great information, that will help you better understand this disease. Until you find out all the details, there's not much you can do other than educate yourself. There are other guys who will stop by shortly and will be there to help I'm sure. It is scary to find out you have cancer, but pending your results there may be several good options for you to have a successful treatment plan. Hang in there, read about PCa and ask questions. We've all been in a similiar situation and we're here to help.

Mike
Posted 10/24/2013 10:54 AM (GMT 0)
Hi David,

I'm sorry you need to be here, but glad you found us. Great source of information and support.

What is your age? What were your prior PSA scores (if any)? Do you have family history of Prostate Cancer?

I strongly suggest you check the links in my signature below for folks who are newly diagnosed (especially the first link, at the moment).

-Gedman
Posted 10/24/2013 10:56 AM (GMT 0)
David, sorry you need to be here, but glad you found us. You'll find a great group of guys, all sharing your same situation to varying degrees. Ask questions, vent, whatever you feel like doing here.

You'll freak yourself out if you do a lot of internet searching without much information; the worst case scenarios are scary, and it's not likely you're in that situation. It could happen, it's just not very likely.

Keep breathing, man. That may feel like about all you can do at the moment. It's a roller coaster ride, and you will eventually find ways to live with it. It took me a couple of weeks, but once a plan began to form it got much easier to deal with. Hang in there, you do have a battle on your hands. "Engage!"
Posted 10/24/2013 11:37 AM (GMT 0)
I'd recommend getting a copy of Dr. Patrick Walsh's book, "Surviving Prostate Cancer". It answered many of the questions I had.

Best wishes and good luck.
Posted 10/24/2013 11:40 AM (GMT 0)
Hey David.

I know what you're going through.

I also discovered testicular pain one day prior to my surgery and had back problems.

Here is what I was told when I voiced your same concerns to my professionals at the time... 1) no link between testicular pain and PCa so to forget about that and that 2), with my stats, it would not have moved to bones already (some here would even argue that it never would).

I hope to get reassurances on these from your medical team soon.
Posted 10/24/2013 11:54 AM (GMT 0)
Thank you guys for the replies. Guess I will be posting here for a while. It's amazing how much better I feel when I get these messages. I hope to deal with this better after my CT and MRI. Atleast I will know where I stand.
Posted 10/24/2013 12:32 PM (GMT 0)
Research for a while to understand your current evaluation and/or treatment options and then take a break. PC is very treatable and we have access to excellent healthcare in America. I started 2 new hobbies this year and it has helped me to focus on something else.
Posted 10/24/2013 12:32 PM (GMT 0)
Hi David,

That feeling of terror will definitely diminish after you've been on this forum for a while. The knowledge you gain here will help you to understand all the data you'll be receiving from your medical pros. And when you run into something you don't understand, just ask, and these Healing Well folks will usually have good answers for you.

Steve
Posted 10/24/2013 12:34 PM (GMT 0)
Hi David and I'll also welcome you. You've found an incredible resource here, and at the right point in your journey. No need to panic at this point, get your tests done and please share the results with us - easily done by creating a "Signature" in "My Profile."

Chill out for now, and get on the learning horse and ride it hard!
Posted 10/24/2013 12:48 PM (GMT 0)
Try to put your mind at ease about the MRI and the CT scan.  They will almost certainly show nothing, but they are performed so that you have baseline images that might someday be useful years down the road.

And, of course, these tests are non-intrusive and not painful, just bothersome. 

The other guys are right.  This is a time to learn all you can about prostate cancer and the various treatment options, including Active Surveillance if that is an option for you.

Keep your spirits up, pay attention to what the doctors tell you.  Some of us have found it very helpful to have our wives or someone else with us when we meet with the docs.  Often we hear the word "cancer" and then fail to hear all the other information that is put out there for us, but a wife, or a companion can listen and take notes and is likely to remember more.

One final thought:  find the best physicians you can.  Choose doctors who have done these procedures many times with outstanding track records.  Best of luck to you, and keep posting here.

Posted 10/24/2013 12:56 PM (GMT 0)
Hello David,

You can call your urologist's office and get your Gleason scores, or ask for a copy of your pathology report. You did well to remember the four out of twelve cores part. Lots of guys don't remember a single word of that conversation with their doctor except the word cancer.

I'm not a betting man but I would take a bet that your body scan doesn't show anything and your MRI doesn't show much you don't already know. While it does happen on very rare occasions, most guys your age don't have any symptoms from prostate cancer. Your back aches because your back aches and your testicles hurt for the same reason that your scrotum itches -- you are a guy and that happens.

Keep us in the loop. It helps to take a recorder with you when you talk to your doctor. My recorder's name is Irene. (My wife.) If you don't have one of those, take a mechanical substitute with you.

Welcome to the forum. You'll be OK.
Posted 10/24/2013 12:58 PM (GMT 0)
Hi David,

Sorry to hear this but welcome. You should be sure to obtain a copy of your biopsy pathology report and you should also have your slides sent for an expert 2nd opinion (e.g. Hopkins or Bostwick).

The good news is you have plenty of have time and with your low PSA, relatively few positive cores and presumably (assuming your DRE was normal) stage T1c disease, will likely have many good curative treatment options.

I strongly recommend picking up a copy of Dr Walsh's book ASAP. It will give you lots of good information. Of course we are also here to help!

Good luck.
Posted 10/24/2013 1:02 PM (GMT 0)
Hello, David...I will add my welcome to those you have already received. Sorry you have to be here but please take advantage of the support and knowledge that exists on this site. As Mike said, the thread for newly diagnosed patients can be extremely helpful...here is the link: www.healingwell.com/community/default.aspx?f=35&m=2652250

Your scans are unlikely to show anything. Now start channeling that terror into action...get yourself educated on our disease. Get back to your doc and get your full pathology and stats. Read some books like Dr. Walsh's, "Guide to Surviving Prostate Cancer" and Dr. Scholz', "Invasion of the Prostate Snatchers". When you get your biopsy results start thinking about getting a second opinion from a prostate pathology expert like Epstein or Bostwick.

Knowledge is power -- start taking control so you can be an educated patient. As you will learn, YOU will likely have to make some key decisions so you want to be prepared.

Jim
Posted 10/24/2013 1:20 PM (GMT 0)

I am amazed that none of the long time posters here have not pointed out to this guy that it is very unsual and strange for the doctor to be sending this guy off for a full body scan without first being told the results of his biopsy.  Come on guys,  this is strange.  David, if your Gleason score is 3+3=6 and your PSA is under 10, then a full body scan is a complete waste of money and time. 

Even if you aren't a Gleason 6 and your PSA is over 10 the doctor owe’s it to you to first discuss the results of the biopsy with you and then you both can determine what is the proper way to proceed.  David, you may want to get a second opinion on your biopsy resulst before you run off and pump your body full of radiation.  Again, if you are low risk the full body scan is a complete waste of your time and money. 

Bottom line is you should do nothing until you meet with the doctor and discuss the results of you biopsy.  You don’t know what you are dealing with yet.   I would call the office and insist they give you a copy of the biopsy report.   They can’t refuse it’s your medical information.   If they won’t send it go get it from them.  

I would strongly encourage you to get a second opnion on your biopsy slides.  Tell your doctor you want them send to Bostwick or Johns Hopkins to see what they think they see on the slides. 

If your PSA is 2.97 as I believe you stated in your post, no matter what your Gleason score the chance of a scan picking anything up is about 0 at this point.   That is if you can believe all the studies about full body scanning done on men with a PSA below 10.

Posted 10/24/2013 1:40 PM (GMT 0)
David:
We all understand the up-front fear. While everyone's situation is, at least, a little different and your mileage may vary, I am three weeks post robotic surgery and things went extremely well. The next day I walked two miles in my neighborhood. Day three had me 160 miles away cheering at a college football game. Day 5 I was back to work full time. Day 9 the catheter came out (Wahoo). While I am still wearing a pad, it is comfortable and doesn't show and I think it only catches a few drops a day, I'm learning what situations are likely to cause it and it is stopping. I have no ED, but I have to remember to empty my bladder beforehand. My pathology came back clear. That's it. If they let me ride my bicycle, my life would be 100 normal. You need to take this VERY seriously, find doctors that inspire confidence, but there is no reason to panic. Get cured. The day my catheter came out I drove 200 miles to hold my first grandson, born the day before. That's what counts, to me. I have 6 children and, God willing, I will meet all their GRANDchildren.
God bless!
Mikey
Posted 10/24/2013 2:13 PM (GMT 0)
I will be getting a copy of my results . Thanks for the heads up. He phoned me after the biopsy and said " I just got your results, out of 12 samples 4 from the right side showed cancer. I need to set you up for the full body scan and pelvic ct. When he has the results he wants me and my wife to come in and talk about the next steps. I plan to get all results and search out more opinions quickly. Thanks
Posted 10/24/2013 2:22 PM (GMT 0)
David, pls demand your Gleason score from the urologist. If, like me, you are (were) a G6, all these tests are premature. A G9 is a very different story, The gleason score is the primary driver for ordering tests beyond a biopsy.

I am a bit jaded about docs and the tests ordered!

As to the dull testicular ache, have you been checked for a hernia by a surgeon (as opposed to a GP)? Thats how I discovered my hernia and had it repaired during the same surgical procedure to robotically remove my prostate (RaRP), albeit by a different surgeon.

My procedure(s) were 2.5 yrs ago. Take comfort in the fact that the vast majority of members here fade away, and get on with their lives. I lurk on occasion to find guys like you who need encouragement in the first few days after what for all of us was a horrible phone call advising us of our cancers.

You'll be fine!
Posted 10/24/2013 11:28 PM (GMT 0)
Welcome to HW David!

Many good points have been made already:

Get a copy of your biopsy results, it will tell your Gleason score.

Bring your wife with you for visits to the doctor, we don't hear everything since our minds are preoccupied with CANCER!

The scans are pretty routine to establish a baseline

Buy Dr.Walsh's book, it's the bible we use.

Knowledge is power! Learn all you can.

I would suggest keeping all your records in a binder and scan them in your computer also for the future. Always ask for copies of all test results.

I started keeping a journal since my biopsy about all I went through and how I felt. I stopped the journal 1 year AFTER my surgery so my journal is about 15 months long. I revert back to it from time to time to remind myself what I went through and how I felt.

Good luck, we are all here for you. No question you have will go unanswered here. We all know what you are going through. Everything will be okay brother.

Bill from Florida cool
Posted 10/24/2013 11:28 PM (GMT 0)
Gleason score 6 3+3 4 cores. No perineuril invasion seen. Got my results. Wife at bookstore now picking up the books you guys suggested.
Posted 10/24/2013 11:53 PM (GMT 0)
Hi DD,
I was 44 when I arrived here. But my numbers were much worse. While I was G6 I also had half my cores positive and up to 90% positive. My PSA was at 19.8.

But that was nearly 7 years ago. I am in remission in spite of advanced disease characteristics.

Interesting they are doing full body scan. That is not typically useful in G6 low PSA cases.

Tony
Posted 10/24/2013 11:55 PM (GMT 0)
Gleason 6 is good news for sure and with a low PSA you can probably ratchet the worrying way down.
Posted 10/25/2013 12:08 AM (GMT 0)
I've gone from " am I gonna be here for Christmas with my daughter and wife? To " I can handle this ". In less than 16 hours talking with you guys. Bless you all.
Posted 10/25/2013 12:16 AM (GMT 0)
Ha.
Been there done that. My Dx was on December 22. I was expecting it. But when you hear it your life changes. I didn't sleep for several days and totally blew past my favorite holiday with little recollection of it. It was 2:00am on December 26 up at night in tears that I searched out and found HealingWell.com. That was the first day I became a survivor in my heart.

:-)

It's a great place DD. What a powerful and helpful place indeed...

Tony
Posted 10/25/2013 12:59 AM (GMT 0)
I will say it again.

If you are 3+3=6 and your PSA is 2.97, your doctor is fleecing you about getting a bone scan or any scan for that matter.  The meer fact that he ordered it shows that he either has no idea what he is doing, or he is purposly draining your pocket book.  Research it and you will see.

Regardless of what others here have said a bone scan for you is "NOT" routine and you do not need to establish any kind of a baseline for the future.  Not at this stage in your diagnosis. 

You are considered what is called a "low risk" prostate cancer patient.  Meaning you have a very low risk of dying from prostate cancer even if you do nothing.  That is provided you are truly a Gleason 6.  I would not do any scans until I have had my slides read by someone else.

I was also a Gleason 6 with a PSA of 2.79 at diagnosis at 42 years old.  I went to Johns Hopkins and had surgery by Dr. Partin.  Even he said there was no need to do any sort of scanning for a low risk patient.  Infact none of the 3 very experience urologists I saw wanted any scans done at all.   Not scanning is what is normal for the "low risk" diagnosis you have. 

If you were a high risk patient the scans would be used to try to determine if there were any noticable signs of spread to other parts of your body.  If the scans did show anything then nobody you want to remove your prostate because the cancer had already escaped. 

Read this about bone scans at diagnosis......Your wasting your money and putting radiation into your body you don't need......

The entire database included 819 patients, of whom 633 were assessed retrospectively and 186 prospectively.

  • 672/819 patients met all the inclusion criteria.
  • The average (median) age of the eligible patients was 71 years (range, 39 to 93 years).
  • 54/672 eligible patients (8 percent) had evidence of metastasis to bone based on their bone scans.
  • PSA levels and Gleason scores were both independent predictors of a positive bone scan, and their predictive value was additive.
  • 357/672 patients had a PSA level < 20 ng/ml and a Gleason score < 8 and none of these patients had a positive bone scan.

here is the entire article

http://prostatecancerinfolink.net/2011/03/09/who-really-needs-a-bone-scan-at-time-of-diagnosis/

BTW if you are truly a Gleason 6 and have your prostate removed and stay Organ Confined G6 you won't die of prostate cancer for another 30 years and longer......Ask Walsh at J.H. if you don't believe me. I think you'll make this Christmas and many more.....

Again, I am amazed at the long term posters here that know better then this and are saying anything....

Dx @ 42 PSA 2.76 GS6
open RP 10/08
pT2 Organ Confined GS6
4.5 Year PSA <0.03

 

Post Edited (ChrisR) : 10/24/2013 7:18:29 PM (GMT-6)

✚ New Topic ✚ Reply
12