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Old 11-13-2012, 08:49 AM   #1
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Post High PSA level 56

I'm 48, great health, went to the doctor with what seemed like to me frequent urination. No pain, slight issue with stopping.

My doctor scheduled blood work and my PSA came back at 56.6 at which point I was referred to a urologist. The urologist did a prostate exam and said while my prostate felt firm on one side he didn't feel any nodules but wants a biopsy. He said the prostate didn't feel enlarged but mentioned calcification?

I requested a second PSA screening which came back slightly higher 62 in 7 days. I didn't realize that my current GP hadn't scheduled a PSA test in 4 years - last ones being in 2007 & 2008 with a result of 2.6 & 2.8.

The lack of information provided to me by all doctors is astounding while the info provided on the web is frightening.

I don't know what to think at this point and I'm trying not to think the worst.

 
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Old 11-13-2012, 02:27 PM   #2
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Re: High PSA level 56

Quote:
Originally Posted by Phila1964 View Post
I'm 48, great health, went to the doctor with what seemed like to me frequent urination. No pain, slight issue with stopping.

My doctor scheduled blood work and my PSA came back at 56.6 at which point I was referred to a urologist. The urologist did a prostate exam and said while my prostate felt firm on one side he didn't feel any nodules but wants a biopsy. He said the prostate didn't feel enlarged but mentioned calcification?

I requested a second PSA screening which came back slightly higher 62 in 7 days. I didn't realize that my current GP hadn't scheduled a PSA test in 4 years - last ones being in 2007 & 2008 with a result of 2.6 & 2.8.

The lack of information provided to me by all doctors is astounding while the info provided on the web is frightening.

I don't know what to think at this point and I'm trying not to think the worst.
You have to get yourself to the specialist! Drs are busy and you may get lost in the shuffle. You should have had a biopsy in 2007.

So you get your biopsy; they'll probably find cancer cells; then you get to choose among choices that you don't want any part of. And the doctors want YOU to decide your course of action.

 
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Old 11-13-2012, 03:06 PM   #3
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Re: High PSA level 56

One thing i've learned, is that you can't depend on any doctors today to care enough to go out of their way to do the right thing. They are all well intentioned, but overworked. So we have to own it. Its up to us. And some times that means we have to be a PITA to the docs. Can't worry about that. Nobody outside your family cares about you, more than you.

Also, specific to PC, from the reading I've done the last few days, it seems like all decisions are up to us, the docs won't tell us what to do, they will give us options. It sucks. But as long as we know what we are dealing wtih , we can deal with it.

 
Old 11-14-2012, 05:44 AM   #4
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Re: High PSA level 56

wife posting for husband -
Biopsy is tomorrow, I had a conversation with the family doctor yesterday where he actually said expect cancer. I expressed my concern over capability of the urologist that we're seeing and he offered to give referral to Jefferson or University of Penn for 2nd opinon after biopsy. Although he said he's referred many patients to local urologist who has a good rep. I just don't know.

I know this is a step by step process starting with the results of the biopsy which we will wait 2 long weeks for the results and then work from there.

I have to say at this point I'm angry at our GP for totally dropping the ball and not scheduling this test for my husband since he was so thorough with everything else. Previous doctor ran the tests in 07 & 08 current doctor had no comment, said he didn't know why it wasn't scheduled. At this point do I switch family doctors? How can we trust this guy?

Just putting this out there because at this point there aren't too many other places to turn to. Previous post was correct, people don't really want to hear upsetting news ... other than close family... it's just a downer.

Last edited by Administrator; 11-23-2012 at 07:23 PM.

 
Old 11-14-2012, 05:49 AM   #5
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Re: High PSA level 56

My own opinion, and I'm no expert, is if you feel uncomfortable in any way shape or form with any doctor you or your husband go to, make a change. medical issues are hard enough, if you don't have complete trust in the person treating you and advising you, it makes no sense to continue that relationship.

The days of putting these guys on a pedestal and completely trusting them are over.

 
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Old 11-14-2012, 10:15 AM   #6
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Re: High PSA level 56

Quote:
Originally Posted by Phila1964 View Post
wife posting for husband -
Biopsy is tomorrow, I had a conversation with the family doctor yesterday where he actually said expect cancer. I expressed my concern over capability of the urologist that we're seeing and he offered to give referral to Jefferson or University of Penn for 2nd opinon after biopsy. Although he said he's referred many patients to local urologist who has a good rep. I just don't know.

I know this is a step by step process starting with the results of the biopsy which we will wait 2 long weeks for the results and then work from there.

I have to say at this point I'm ****** at our GP for totally dropping the ball and not scheduling this test for my husband since he was so thorough with everything else. Previous doctor ran the tests in 07 & 08 current doctor had no comment, said he didn't know why it wasn't scheduled. At this point do I switch family doctors? How can we trust this guy?

Just putting this out there because at this point there aren't too many other places to turn to. Previous post was correct, people don't really want to hear upsetting news ... other than close family... it's just a downer.
The urologist is just an intermediate step for the biopsy. Then you get referred to the cancer specialist for more complete explanation of treatment options and for the treatment itself. I'd go to a big place, the University Hospital would appeal to me, not a single guy. I'd probably change docs also.
I hope you/he get good news.

 
Old 11-23-2012, 11:53 AM   #7
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Re: High PSA level 56

My husband had his biopsy last week and the doctor seemed somewhat positive in that the ultra sound showed no nodes or irregular borders on the prostate. He said he did see some shadowing within but that could be age or possibly cancer.
The doctor also said that it's been only 5 years since my husband's last PSA test and that it typically takes about 8 years for the cancer to grow outside the prostate. Now we wait for the biopsy results. Am I wrong to feel hopeful that this could be somewhat positive? At this stage I'm trying to keep my husband positive which is proving difficult.

 
Old 11-23-2012, 12:02 PM   #8
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Re: High PSA level 56

PSA of 56 is a high number. With that said, its better to have a clean ultrasound, than one that is showing nodules. So try to stay positive. Friend of mine who has been through it all, said to me that the one thing that got him through was knowing that PC is usually a very slow growing cancer. So there is a very high likelihood, that whether the biopsy shows cancer or not, everything will work out and in the end, he will be ok.
Be cautiously optimistic.
I know, easy for me to say, its very hard waiting. I am waiting for my results as well.

 
Old 11-23-2012, 12:24 PM   #9
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Re: High PSA level 56

I know... 56 is a discouraging number and everything I read people are posting cancer results and their number is much much lower. We go from being OK to feeling absoultely sick over this. We've started the count down till we get the biopsy results - 5 days. I've tried to get my husband to have our DR. prescribe meds for anxiety but he won't do it. He doen't even like to take OTC meds but I finally have him taking tylenol PM just so he can sleep. At PSA 56 I'm so afraid they're going to say it's outside the prostate. Still - trying to be caustiosly optimistic.

 
Old 11-23-2012, 02:35 PM   #10
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Re: High PSA level 56

@Mrs Phila,
I feel for you, and wish there was something i or anyone here could say to ease your anxiety. Unfortunately, as you know, only the doc can do that.
Just keep thinking good thoughts, and remember that this is a cancer that is usually very slow growing, so in situations that are not curable (not confined to the prostate) it is usually controllable, often for many many years.

And if i sound calm, about the fact that i will be getting MY results in 5-7 days, as well, trust me, i am not calm. In fact i was in a total panic, BEFORE the biopsy, over the procedure itself. My doc was willing to give me 2 xanax to take just before the procedure, but not more. It got me through. Tell your husband that it will make this easier to take, and that there is no need to be a hero.

Don't get me wrong, when i get the call, if its cancer, it will be a punch in the stomach, and i have no doubt i will be shaking and sweating. But i can't control it, i have to just wait and hope.

So for what its worth, you are not alone. There are so many on this forum and others who have gone through or are going through this.

Last edited by moderator2; 11-23-2012 at 03:02 PM.

 
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Old 11-28-2012, 04:30 PM   #11
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Unhappy Re: High PSA level 56

Biopsy resuts today, positive for prostate cancer Gleeson score of 4 + 3 but the doctor said something about the results being 6's with some 7's with I think all cancer on the right side of the prostate. He's referred us to a surgeon, said that removal of prostate would be the best course of action. He also had us schedule CT scans to check pelvic area and chest and nuclear bone scan. Luckily I was able to schedule all tests for tomorrow.
This is all very scary for us, we want to believe there will be a strong course of action with years ahead, my husband is young. I didn't yet get a copy of the exact gleeson score but the urologist said he felt there was only a small chance the cancer had spread outside the prostate - we're hoping this is so.

 
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Old 11-28-2012, 06:38 PM   #12
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Re: High PSA level 56

I'm sorry to hear about the diagnosis. If you're like most of us, "cancer panic" sets in quickly. Because of that, it is important to take a deep breath and some time before making critical decisions.

In the interim, it's a good idea to have your biopsy slides sent to an independent pathology lab for a second opinion. Either Bostwick or Epstein's lab at JH specialize only in reading prostate biopsies. Second opinions are always a good idea - both for diagnosis and treatment. If you are in the Philadelphia area, Dr. Mark Bouyyounouski at Fox Chase is one of the world's leading radiation oncologists.

Until you have the results of the CT scan, and I hope, a full body PET/CT scan, it's premature to discuss treatment options. For the PET/CT scan, they usually do a Technetium bone scan, but if you can get it, a NaF18 PET/CT scan will tell you a lot more (I'm not sure, but I think I read that UoP offers it), and a C11 Choline PET/CT scan (available only at the Mayo Clinic) would be even better, because it would also reveal any lymph node metastases. It's important to rule out metastases before considering treatments.

I hope you will stay in touch.

- Allen

 
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Old 11-30-2012, 08:12 AM   #13
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Re: High PSA level 56

Obtain a copy of the pathology report from your biopsy. Put it in your treatment folder you have been making.
Be certain that you read and understand everything in it. Keep your doctor consultation notes in your folder also.
Be certain to have someone with you at all meetings to take notes and ask about issues that may pass you by. Your doctor(s) should provide copies of consultation notes about your meetings.
Stay educated. Consider a local prostate support group.
You are well on your way to enlightened patienthood.

 
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Old 11-30-2012, 12:05 PM   #14
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Re: High PSA level 56

My husband is convinced it's all bad news and he's not going to live any length of time. As much as I've tried to convince him otherwise. He won't consider a support group, he's a very private person and doesn't want this discussed outside family. He's finally taken the xanex that our family DR. prescribed, it's not making a dent in his mood/depression. I'm staying positive in my thoughts that the only symptom he's had is frequent urination and although his psa is 56 he isn't experiencing any other more advanced symptoms with ED, pain or blood in anything. I feel we have a chance at beating this since the PSA is below triple digits. He feels healthy and strong and my mantra has been for him to focus on how his body feels right now and build on that. Not sure I'm that thrilled with our urologist at the moment, he gave us a book 1001 questions about prostate cancer - or something like that - it's all very depressing with very little positive. Also, when I brought up keeping a healthy diet and exercise the urologist said it didn't matter. I feel even exercise will help eleviate stress - so strike one "wrong answer". He also immediately started talking removal of prostate which we jumped on initially because it means -get the cancer out! But reading other posts they seem to think this would be a premature decision. I am definitely looking for a second opinion - this is all happening so fast and I know my husband's attitude won't change until we have a plan of action. This is all being left to me, he wanders around in a fog most days. Per other suggestions I've called the UR office and asked for the biopsy results - I'm also going to see if the family DR. can give him something more for depresion than anxiety.
Just venting here ..... any suggestions, bits of info, comments concerning personal experiences would be much appreciated at this point.

 
Old 11-30-2012, 01:53 PM   #15
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Re: High PSA level 56

This is all so very new and shocking to both of you -- I hope you will give yourselves and each other whatever time it takes to work through all the feelings that are hitting you both like a hurricane. It is so typical for men to become withdrawn and uncommunicative and for women to reach out, part of the Mars/Venus communication styles we all have. You're right too that some of us (like your husband) tend to react to the cancer news with generalized depression, and some of us (like you and me) tend to react with anxiety. I think you're right to try to get those symptoms under control because they can get in the way of the clear-headed decision-making required of you both now. You might want to get in touch with the Cancer Support Community of Philadelphia. They offer many different kinds of support, including counseling and lifestyle.

You may also be interested in this recent post on coping with anxiety and depression:
http://www.healthboards.com/boards/cancer-prostate/921032-handling-anxiety.html


I am with you 100% on the importance of exercise -- I've found that it's a much more powerful mood enhancer than any drug, and it also plays a role in fighting the cancer by enhancing the immune system. Two studies found that men who walked briskly for more than 3 hours a week had about a 60% lower risk of PC progression and death:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056656/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3107352/

There are even more benefits to exercise - both cardiovascular and load-bearing- if your husband winds up using hormone or radiation therapy.

In terms of diet, you might want to look at my post #8 to a similar question:
http://www.healthboards.com/boards/cancer-prostate/920431-new-diagnosis-age-48-no-symptoms-2.html

I wish there were more definitive data on diet, but really, most of the research is just suggestive. There was a recent mouse study that demonstrated that a 20% carb diet slowed PC growth vs a western diet (55% carb), but no one knows if that will translate to humans:
http://www.ncbi.nlm.nih.gov/pubmed/23038057


To my mind, Fox-Chase is one of the best cancer centers in the US.

- Allen

 
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