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Posted 6/13/2011 5:30 PM (GMT 0)
I went for my second 12 needle biopsy 3 weeks ago. They just called this afternoon, and asked to see me Thursday morning to discuss the biopsy results. The reason I am concerned, is that after the first biopsy two years ago, they called, saying the same thing only with a reassuring "and nothing to worry about, the results were negative." I managed to enquire, before his office manager hung up without uttering these reassuring words, and she said "oh we can't tell you over the phone"....ya, well I'm thinking..oh ya? you were eager to reassure me last time! Now of course, I'm freaking here, thinking the worse. I live in Canada, and I'm not sure if it's common practice to do so over the phone in other country's, or here, but just looking for any feedback. I guess my question is; has anyone else not been told their result, when the biopsy is negative? Or is making you sweat it out for a few days the norm?

My history is; So far healthy, happy, fit 56 year old. Family history unknown as I was adopted. No other medical problems to date. The two biopsies were ordered because of free PSA scores, which I don't have in front of me, but had dropped to normal between biopsies. I suspected, adn suggested perhaps I had prostatitis, as I would occasionally have mild symptoms. The gave me two round of antibiotics, the first with Cipro, which worked like a charm, and following tests came back normal. The second time, it almost eliminated all the symptoms, but alas, a week after the last pill was taken, the symptoms returned. Keep in mind we are talking very mild symptoms. My prostate is smaller than average, and that, appears to be the main reason they are concerned. They insisted I go for another test after what I considered, was a prostatitis flare-up, was not yet over. Of course, the test came back, and they ordered another 12 needle biopsy. The Dr. doing the TRUS guided biopsy assured me my prostate looked fine, with no obvious external issues.

Should I be going into full blown panic mode yet? The time between biopsy, and calling me for follow up, was about the same for both. 3 weeks.
Posted 6/13/2011 5:54 PM (GMT 0)
My uro wanted me in the office to discuss the biopsy results as well. I have no idea what other doctors might do, but it seems appropriate that you get information in a setting where you can ask questions and get answers. I would not have had a clue what my results meant.

I would suggest that you take it easy and relax a bit. Worrying about it will accomplish nothing positive.

Trust me on that - I've been in your position.

Posted 6/13/2011 6:02 PM (GMT 0)
My urologist did not give me the results over the phone.  At the time of the  biopsy I had a follow-up appointment scheduled a week later. 
Posted 6/13/2011 6:20 PM (GMT 0)
Thanks for the support, but It's just that I am concerned about the inconsistency. First biopsy, a scheduled follow-up, with a reassuring message from the Urologist. Second, no reassurance. Well, I suppose if it was critical, they would have called me in sooner? *sigh* ok, I won't worry....much. I'll keep you posted with the results.

Almost forgot a detail, that may, or may not mean anything. When seeing my GP, I asked if I should go for another free PSA test before the biopsy, as it had been almost a year since the last. He thought that may be helpful for continuity. I am not a physician, but would a test before the biopsy, not make sense? Anyway I went for the blood work two days before the biopsy, but do not have the numbers back from that, so hopefully that will also be on his desk.
Posted 6/13/2011 6:53 PM (GMT 0)
I was told I had cancer over the phone. He then said "why don't you hop in the car so we can discuss it further", I didn't.

I think it really depends on the nurse you get. I wouldn't read too much into it although I know how hard it is.
Posted 6/13/2011 6:58 PM (GMT 0)
Absolutely understand. I find that I try to read things into every little detail, both positive things and negative. Doing it does us no good, but how do you get your brain to stop "going there?" My best recourse is to stay busy while waiting. At least your wait will be relatively short. In reality, I'm guessing their response had no particular meaning. They could have been busy, interrupted, all kinds of things.

I am very close to your situation - just had my biopsy, no results yet, lots of reason to be hopeful, but still seeing the negative everywhere. I'll make you a deal, even though you're "rightcoast" and I am out here on the "leftcoast" - I'll keep lots of good thoughts for you, you do the same for me? Can't hurt to spread some positive thoughts around this board? We are two of the ones here who still have a shot on being on the good side of this problem, and I'd sure like to stay there as long as I can. Meeanwhile I keep poking around, to learn, and to offer support to everyone.

Hang in, don't overthink it, stay busy, and live as if you can make a difference!
Posted 6/13/2011 7:04 PM (GMT 0)
I was told they would call if results were negative. Came home a week later to find an appointment card in my mailbox. Called and said "I thought you said you'd call". They said "sorry, we can't tell you anything over the phone but you shouldn't have been told that. You just need to come to your appointment" (which was over a week away). Needless to say, I was worried...The Dr. comes in and and says, "Well I know you'e been waiting and are anxious so I won't keep you waiting any longer, you have Cancer." Didn't hear another word after that...glad my wife came with me. Hoping you get much better service and news than I did!
-Bob
Posted 6/13/2011 7:09 PM (GMT 0)
Thanks again. No use worrying, won't get me anywhere. But the real problem is that I am retired, and have a great "retirement job" which does not allow for sick leave or lengthy absences, and as it involves driving, I am worried more about losing the job, and the ability to get another one, than having prostate cancer. Sure they will find a replacement while I'm laid up, but I won't be getting paid. My wonderful wife still works, and I have a government pension, but I really love this job, and all I've heard is horror stories about how long and debilitating, treatment and recovery is. I know I'm jumping the gun here , and considering all the possibilities, I realize it should be the least of my worries, but there it is. So many men here are fighting, will be fighting or have fought this cancer, and I'm whining about a "possible" diagnosis, and the loss of a job. I'm sorry about that.
Posted 6/13/2011 7:13 PM (GMT 0)
Leroy, wilco!
Posted 6/13/2011 7:14 PM (GMT 0)
This is a scary disease, and it's easy  to assume the worst and hope for the best.  After my bone scan and CT scan prior to surgery, my uro called me and said he wanted me to go back in for x-rays of my lower ribs.  I immediately assumed the bone scan had show lesions on the lower ribs.  I was so worried I called the doctor and asked him what was going on.  He called me back to say he just wanted a better look at those areas and that I shouldn't worry.

It turned out that bone scans aren't always as revealing as the doc might want them to be, and everything was fine, but yes......we worry about what might be going on.

I think you should call back to the doctor's office and tell them that the anxiety is driving you up the wall, and that if something looks bad you want to know about it immediately.  The only thing that can cure "panic" is knowledge.  If it isn't too far away, you might even drive there and present yourself on their doorstep.

I don't know why some physicians don't understand just how anxious the results of test can make us, but they don't.  I hope this all turns out to be much ado about nothing.  Good luck.

Posted 6/13/2011 7:17 PM (GMT 0)

rcroller said...
I was told they would call if results were negative. Came home a week later to find an appointment card in my mailbox. Called and said "I thought you said you'd call". They said "sorry, we can't tell you anything over the phone but you shouldn't have been told that. You just need to come to your appointment" (which was over a week away). Needless to say, I was worried...The Dr. comes in and and says, "Well I know you'e been waiting and are anxious so I won't keep you waiting any longer, you have Cancer." Didn't hear another word after that...glad my wife came with me. Hoping you get much better service and news than I did!
-Bob

yeah, it's a horrible moment. I couldn't get a single word out of my mouth. I literally couldn't speak. I could hear my wife trying to figure out what was going on. She was int he next room over and was worried for the worst. After a minute or two when i could get a word out and said "what do you mean positive" I heard my wife gasp. Then I just buried my head for five minutes. It was a horrible moment we have all gone through. Wish I knew as much then as I know now. No doubt I would still have been awfully upset but nowhere near as scared.
Posted 6/13/2011 7:20 PM (GMT 0)

rightcoast said...
Thanks again. No use worrying, won't get me anywhere. But the real problem is that I am retired, and have a great "retirement job" which does not allow for sick leave or lengthy absences, and as it involves driving, I am worried more about losing the job, and the ability to get another one, than having prostate cancer. Sure they will find a replacement while I'm laid up, but I won't be getting paid. My wonderful wife still works, and I have a government pension, but I really love this job, and all I've heard is horror stories about how long and debilitating, treatment and recovery is. I know I'm jumping the gun here , and considering all the possibilities, I realize it should be the least of my worries, but there it is. So many men here are fighting, will be fighting or have fought this cancer, and I'm whining about a "possible" diagnosis, and the loss of a job. I'm sorry about that.

I had surgery and was ready to go back to work within a week. Others here have said the same.

My boss did seeds and he worked throughout it. He'd go in the afternoon. I don't recall him taking any time off.

And I think you will be surprised how understanding your employer would be. Telling him you have cancer to treat and that you love your job should assure you some kind of arrangement that works to your advantage.
Posted 6/13/2011 7:24 PM (GMT 0)
We hear you and we have been there, trying to interpret every little nuance.

Let's face it, there is no really standard protocol.

Good luck Thursday.

Mel

Posted 6/13/2011 7:44 PM (GMT 0)
Dear rightcoast:

Welcome to HW...sorry you have to be here but I think you will find lots of great info and support on this forum.

To directly answer your question, we got the results over the phone.  My biopsy was on a Friday, the samples went to Bostwick and the doctor called early the next week and gave us the bad news.  He was specific in stating things like "early stage cancer", very treatable, lots of options and provided the Gleason score, number of samples with cancer and % cancer in each core.  He then said he would fit us into his schedule within two days for us to discuss it in depth including treatment alternatives.

Frankly, I found it extremely helpful that I got the news ahead of the doctor's appointment.  We were able to get over the initial shock and get prepared with some basic questions.  We would never have been that prepared if we had not had the news ahead of time.

I certainly don't know the rules in Canada and each physician probably handles things differntly anyway.  However, if you want to know and are having this much anxiety now...why not call the physician and request (demand) to speak to him or have him call you back.  Then explain that you want to know the news NOW so that you can be prepared with your questions when you meet with him,

Hopefully your questions about the job and time off will turn out to be unnecessry.  However, again to answer you, the average time to return to work after surgery seems to be several weeks (others with experience will undoubtedly chime in here).  After brachytherapy it is a couple of days and external radiation will require multiple sessions over some weeks.  Of course you may or may not be "average" so take that into consideration.

Good luck and please keep us posted.

Tudpock (Jim)

Posted 6/13/2011 8:15 PM (GMT 0)
Again, thanks so very much folks, just your feedback, has dropped my anxiety down a couple of levels. I may call tomorrow, but I'm not counting an any reply before Thursday. He is a nice guy, just no people skills is all. I remember our last meeting. I had meticulously recorded every possible symptom real or imagined over a six month period, by date and symptom. Had a whole list of questions also prepared, and he just ignored me and talked over me while looking at his monitor. He then proceeded to scare the crap out of me by telling me, that beside the TRUS biopsy, he was going to "inspect" my bladder from the other end, and it would be painful and require wearing a catheter for a unspecified period of time. When I asked him why, he said he just wanted to make sure nothing was going on there (in the bladder) At his point I gave up, took the appointment paper and left. Keep in mind, this is after my first negative biopsy, several urine tests, all negative, and free PSA scores that were like a yo-yo. I had also asked, if he suspected cancer, why, did the numbers fall back down into line after a round of Cipro? He is a very concerned doctor for sure, but left me very confused. I'm sure many would suggest trying a different urologist, however, we live in a small community in the country, and specialists are limited. There are only two, and both are permanently booked solid. Good point about the employer, however, they would not fire me, it is just that I don't get paid for hours not worked( my term is "casual"). I have summers off, so this is why I am trying to have this resolved before September.
Posted 6/13/2011 8:19 PM (GMT 0)
Having had biopsies from 5 different doctors I think that it is the doctor's personal preference. Two doctors made me come into the office for results and three gave me results over the phone. It didn't matter if the results were positive or negative; it's the individual doctor's policy on how he does it.
JT
Posted 6/13/2011 8:36 PM (GMT 0)
rightcoast,

As has been mentioned, I'll also MOST STRONGLY suggest you take a mini-recorder of some sort. Ask permission to tape the whole conversation (I've never been refused).

Even now, surgery and RT done, I can still listen to those original conversations and find something I've missed.

Borrow one, buy one - it is worth the effort.

Posted 6/13/2011 10:20 PM (GMT 0)
John T ...I almost chocked on my fish and chips! ...60? 60 pieces of your prostate gone? *groan*
Posted 6/14/2011 1:00 PM (GMT 0)
Clocknut wrote
"I think you should call back to the doctor's office and tell them that the anxiety is driving you up the wall, and that if something looks bad you want to know about it immediately. The only thing that can cure "panic" is knowledge. If it isn't too far away, you might even drive there and present yourself on their doorstep.

I don't know why some physicians don't understand just how anxious the results of test can make us, but they don't. I hope this all turns out to be much ado about nothing. Good luck."

Thanks so much for giving me a kick in the butt to call them back. I actually called my GP and asked his assistant to call me, and she asked why, and I told her I was crawling the walls, and she said "hang on" pulled up my file, and said "well, I am not allowed to, not am I qualified to tell you anything over the phone, but if I were you, I would sleep well tonight *hint hint*. Also she told me that in our province, if it is bad news ,the inform you as soon as the test results are verified...*whew*! Of course nothing is for sure until Thursday morning, but I do trust her, as she has been there for a very long time :~) I still have no Idea why they can't pass along GOOD news by phone? They used to.
Posted 6/14/2011 1:55 PM (GMT 0)
Wow! So glad for you! It's great you found the right person, someone with the guts to help instead of following rules. Send her some flowers!
Posted 6/14/2011 2:14 PM (GMT 0)
Well, after all of this, I would be a fool to be totally relieved until I hear what he has to say. Not to be a pessimist, but he still come back with ..."well we still are alarmed by your free psa scores, so we want to do another biopsy." Or not. Still nervous though. I mean I know lots of you, have had way more than two 12 needle biopsies, and they eventually found cancer.
Posted 6/17/2011 11:13 AM (GMT 0)
Well, I guess the assistant was just being nice and reassuring, and meant I wasn't DYING of cancer...but I do have cancer in my prostate...as I found out yesterday. Gleason 6 on one needle sample on the right side. Less than 5% total surface area 3mm in total linear extent. The doc ramped up his people skills, and was very patient and informative. Like I said, he is a very nice guy, just very hurried most of the time. Anyway, he said not to panic, as my PSA scores, steady around 6.8 have been the same, albeit high for my age, since 2007. No real rise. What was interesting, was after explaining everything that one person could possibly explain in the allotted time, he sent me home with a pile of information and options to mull over. I asked him, in regards to treatment, what his reccomendation was, and he replied that he could not, and would not make a reccomendation, as it was the patient who must do that. He did say that most men die with larger amounts in their prostates, but it was my age (56) that concerned him. Anyway, he gave me a month to decide which course of action to take. He explained each option in detail.
Posted 6/17/2011 11:32 AM (GMT 0)
Sorry to hear that news but it sounds like you are in very good hands. My doc could learn a few things from yours. Best of luck to you in making the treatment decision. You have lots of good support here.
Posted 6/17/2011 1:14 PM (GMT 0)
Thanks for the kind words Rc. I believe he will look after my best interests. It is also reassuring that he does have a 4.5 out of 5 star rating on the ratemds website.

And one day, I will decode the jargon at the end of everyone's post LOL! I understand the 3+3 bit, as mine was 3+3...not really sure why 3+3 instead of just 6, and sadly, he did explain it, but there was a whole lot of info to absorb. It is in the literature here somewhere LOL!
Posted 6/17/2011 1:28 PM (GMT 0)
Dear Rightcoast:

Sorry for the news...this has certainly already been an up and down trip for you.  But, if you have to have PCa, at least you just "barely" have it.  One sample with 5% and G6 surely is minimal...though I don't want to make light of it.

In any case, you very likely have the whole spectrum of options available to you including active surveillance.  I hope you will study all of the options and strongly consider qualify of life as you go forward.  There are many knowledgeable folks on this forum who can help but upfront you should undoubted choose some good reading like Walsh, Strum and Blum/Scholz...then minimally get some advice from a radiation oncologist as well as the surgeon.  I would also recommend you speak with a doc who has some experience monitoring an AS program if you are inclined to consider that alternative.

Good luck and keep us posted.

Tudpock (Jim)

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