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What are the chances of high PSA meaning advanced PC (new member)?

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Posted 4/24/2014 11:37 PM (GMT 0)
Hi guys. I'm a new member and I have been reading up as much as I can on here. I do not know anyone else who has, or has had, Prostate Cancer to talk to.

I'm 44 years old. A recent blood test on a visit to the doctor showed a PSA of 33.9. After a biopsy I was told I had prostate cancer in both sides of my prostate. 3+4 and 4+3, Gleason score 7. I did not know what else to ask them.

I've now been for a Gamma camera scan and an MRI scan. I get the results next Monday. The thing I'm most worried about is the cancer having spread as I've read there is no cure.

Sites I've looked on say if the PSA is above 20 or 30 there is a strong likelylihood of the cancer having spread/metastasized, possibly to the bones. Almost 2 years ago I was told I had sciatica for back and leg pain and sent to a physiotherapist (who just told me to come back if it got worse) but no one ever ran any tests or examined me. I can't stop worrying about it.

The worry is that I have advanced PC. Has anyone got any advice for me (regarding the chance of spread to the bones based on a fairly high psa, or any questions I need to ask when I go back) as I must admit this waiting is excruciating?

I have tried to find people on here with similar levels (psa and gleason) to see if their cancer was spread on diagnosis but I've not had much luck (too many members to look through).

I've been quite pleased with the speed the NHS have dealt with me so far but it is 'business as usual' for them. I need to talk to those who have been through this.

Anyway I hope this all makes sense and I'll check back in next week to tell you how I get on. Thanks.
Posted 4/24/2014 11:55 PM (GMT 0)
Ron,
Well I've got to be honest here - that is not good.
My PSA was 23 and I was considered right on the borderline for surgery vs. some systemic treatment like hormones.
I elected to go with surgery anyway and it appears that I lucked out. After 5 years my PSA is still <0.02. It had not spread.
However, in the words of my surgeon "I had to cut wide to get it all. I'm sorry about that." He left me incontinent and with ED. the incontinence was easily fixed with a sling surgery. The ED on the other hand... :-(

I assume you already ruled out prostatitis and took a course of antibiotics. There is another type of PSA test called the Free PSA but the lab my doc used could not do the analysis of the PSA was above 15. Lucky me.

This might sound bleak but it really isn't. I feel great. I'm in great shape. Even with no erection I enjoy sex and can orgasm as intensely as before. Life is pretty darn good.

If you do elect to go with systemic treatment you might feel miserable for a while but your bits will still be intact and will likely function at the end of your ordeal.

Don't panic. Right now your job is to get yourself in shape. Eat right, exercise, and pretend you are training for a fight. You are.

(Cue the Rocky music)

We will be here for you
Good luck,
Jeff in NY
Posted 4/25/2014 12:03 AM (GMT 0)
Hi Ronnie,
Other people with better experience than me re higher psa's will chip in.
Just to say I was treated by the NHS and they were very good, try and learn as much as you can
about treatments and what they mean.
Good luck,
Mike
Posted 4/25/2014 12:04 AM (GMT 0)
Hi Ronnie -- sorry you have to be here. I really hate it when anyone has to join our ranks but it particularly bothers me when they are so young. your case is a strong example of why I and many others feel all men should be PSA tested beginning at age 40.

my numbers are very similar to yours except my PSA was 6.8, and I'm not going to BS you; your PSA is a big difference. what were the core volumes from your biopsy?

one case you might want to look at is that of southerncomfort. you can also see that I am in remission 3.5 years after the end of treatment. good luck to you. keep asking questions and move swiftly and aggressively is my recommendation.

the best to you.

ed
Posted 4/25/2014 12:11 AM (GMT 0)
Welcome.
People often have strange pains around bones.
If the pain went away, it probably was not metastasis symptom.
You want to know the size of your prostate to compute PSA density, which is PSA divided by prostate size.
There are a lot of treatments now and many more being developed. Good luck on your tests.
Posted 4/25/2014 12:12 AM (GMT 0)
Ron,
Just thought of some other homework for you to add to the list:
1) Empty that prostate as often as you can, and
2) Do kegel exercises. ( Do them whenever a TV commercial comes on.)
The better the shape you are in when you start the process, the easier the recovery.
Jeff
Posted 4/25/2014 12:49 AM (GMT 0)
Ron,

My PSA was 59 at dx.   None of my scans showed any spread, but it take a significant amount of cancer to show on most scans.   I immediately started hormone therapy and PSA has been undetectable for 3&1/2 years.   Now that I am off HT the next several years should tell me if it is gone or just lurking somewhere.

Posted 4/25/2014 1:14 AM (GMT 0)
Ron,

It could mean what you are thinking, of course, but it doesn't mean for sure there is any spread. The good news at this point (if there is such a thing with cancer), is the Gleason 7 based on your biopsy.

Gleason 7 are funny animals, some will run aggressive (like mine) and others will run slow and steady, which seems to be the majority of Gleason 7's.

It would be better if the PSA were lower starting out, but it is what it is. But it doesn't indicate by itself, and reason to be thinking of spread or being in an advance cancer situation starting out.

Just got to work this like a problem, one step at the time. See what the next step reveals to you.

Good luck, and don't let it get inside your head too much.

David
Posted 4/25/2014 1:47 AM (GMT 0)
Ron,
Sorry you have to join our group, but glad you found us. We were all lost at first, but with more information and your specific tests, you can get a circle around your own, personal situation.
(check my signature for my details)
I was a high PSA at diagnosis, also, and at first thought that there was little I could do to slow the inevitable disease progression. But I found as I became more informed, that there were ways to deal with it.
One test that you did not mention having was a bone scan. In your case, as in mine, It will tell you if the disease has or has not progressed to metastatic in the bones. This will let you know what you are, or are not, fighting. I was lucky - my first bone scan was negative, which directed me to treatment for locally advanced disease, and stopped the fear that was paralyzing me.
Even with a positive bone scan, there are treatments, some with curative intent for lesser spread (ogliometastatic disease). All is not lost!
Take the time to research treatments available to you, and find the best doctors you can. Get second opinions, and ask the hard questions.
When you get more information from your latest tests, report back to us here - we're here to share the information many have found the hard way.
Keep your spirits up!
Bob
Posted 4/25/2014 3:02 AM (GMT 0)
Hi Ronnie,

You need to base your treatment on what you have, find out how many cores were involved, what percentage. Is Perineural invasion present in your biopsy report, tumor location, base, apex, transitional zone etc.. extra capsular extensions.

don't rush into any treatment, there is no going back once you commit.

Check out
http://www.yananow.org/Links.shtml

Between these 2 sites and some other research, I was able to make an informed decision that I was confident with. It was a relief to start treatment.
Posted 4/25/2014 3:09 AM (GMT 0)
What is your PSA history?
Posted 4/25/2014 3:41 AM (GMT 0)
Hello Ronnie, sorry you need us, glad you found us. Welcome to the forum.

When you see your doctors next Monday it will help to take a list of questions, some paper to write down the answers and a pen. If you have a wife, take her along too as a second set of ears. Ask if they can give you printed copies of the reports. (See if they can get you a copy of your biopsy report, too.) Everything will be written in impenetrable medical gibberish but we have guys here on the forum who can usually decode the confusing bits.

What seems clear is that you are going to want some sort of treatment because you are at high risk. Depending on the results of the scans some treatments may make more sense than others. Come back and we'll help you sort out your options.
Posted 4/25/2014 1:20 PM (GMT 0)
Hi Ronnie44, so sorry you needed to find us but you will find a great wealth of knowledge and help here.

Yes the waiting is excruciating, we’ve all been there and can totally sympathise. In the meantime try to relax and learn as much as you can about what you are dealing with as it will help you when you have your consultations if you are more able to understand exactly what they are telling you.

A guide we were advised to download and print off as a starter at the time of Jeff’s diagnosis was the ‘Tool Kit’ from the Prostate Cancer Charity website – see following link. It’s a free download.

http://www.prostate-cancer.org.uk/information/our-publications

It is a multiple page document (will fill an A4 ring binder) but full of helpful information and facts about every type of diagnosis, staging, treatment option etc.

Another suggestion is start taking notes when you have your consultations, you think you’ll hear and remember everything but it is all so new and confusing at this point and if you can take a loved one or friend with you, all the better.

When you were given your positive biopsy results you should have been given a copy of a pamphlet published by MacMillan Cancer Support regarding your positive diagnosis and hopefully access to an urologist specialist nurse or some other counsellor at MacMillan who you can contact ANYTIME for help, advice and support. Please do this, if you weren’t given a contact card at the time just contact MacMillan direct, the help and advice these counsellors provide will be invaluable and they can also help you co-ordinate appointments and just generally help and support you on this journey. Your counsellor should have access to your medical records so he/she will be able to explain anything in your diagnosis you don’t understand. They have pretty much seen it all as far as the various different diagnoses go, they work closely with the NHS consultants and will be able to guide and support you.

Most importantly, try to stay calm and channel all your energies into finding out how best to beat this.

Sending you lots of positive energy from a very wet and windy East Sussex.

Please do keep us updated.

All the best to you.
Susan
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Posted 4/25/2014 2:03 PM (GMT 0)
Thankyou for all the helpful replies. I now have a lot of research to delve into about cores, percentage, volume, psa density, kegel exercises etc. so I can structure my questions properly. I will be sure to check out those links and MacMillan.

The only information I can add before my next appointment is that the prostate volume on scan was 47.2cc (psa was 33.9). I'll need to look up what the significance of that is.

I will ask my wife to take a pen and paper to the next appointment and be sure to ask for any reports. Thanks again.

Edit: I have no history of PSA tests.

Post Edited (Ronnie44) : 4/25/2014 8:08:08 AM (GMT-6)

Posted 4/25/2014 2:58 PM (GMT 0)
The PSA density is high which suggests that PSA might mostly be produced by cancer. It doesn't tell you if the cancer has spread or not.
Hoping you hear good news on Monday.
Posted 4/25/2014 6:48 PM (GMT 0)
Hi Ronnie,

I'm sorry that you have had to join us but glad you are here nonetheless. You have received good advice from the others thus far. Waiting is the worst thing once the 'C' word is mentioned and our minds can be particularly cruel at this time.

Remember, the first rule of PCa is that there are no rules. Some types of PCa (usually with high Gleason scores can produce little or no PSA) whereas others (such as those located in the transitional zone) can churned plenty. I was dx at 41 with a PSA of 133 yet my PSA after RT and a little HT (14 months) stands today at 0.15 - nearly 3 years after my last injection. I have no mets, either in my bones or lymph nodes.

Take one day at a time. Just assess what the scans say next and if you have any questions, just ask away.

Cheers,

Paul
Posted 4/26/2014 6:31 PM (GMT 0)
Ron
No sense in obsessing but I know it's hard not to. When you get your results your options will be clearer.
Keep us informed .
Bob
Posted 4/28/2014 10:32 PM (GMT 0)
I got my scan results today. It's strange what 'lucky' feels like, but I felt 'lucky' that it appears to have only spread to the seminal vesicles and not metastasized in my bones or elsewhere.

I asked for the details you have suggested to me.

PSA: 33.9
10 Cores from 12 with 80% in those cores.
Perineural invasion is present.

The doctor suggested that because of my age I should have surgery to remove the prostate and seminal vesicles, possibly some lymph glands too.

This is to be followed by radiology and hormone treatment. He advised all this as the course of action rather than one treatment or another. I've to go back and see him at the end of next week when I've thought about it (there doesn't seem much to think about, I don't really have a choice). With just radiology and HT, although he couldn't say for certain, my chances may not be as good.

It's a relief to know what's happening now but still a worry (my mum contracted a fatal virus on the operating table). He, and the nurse afterwards, advised me of many of the tips you all had suggested.

I do feel happier and have something to work with now. Time to get ready for my battle, and I wish everyone on here all the best in their battle too. I will be sure to stay in touch as I read through the forum.

Edit: Has anyone else been through this series of treatments?

Post Edited (Ronnie44) : 4/28/2014 5:28:02 PM (GMT-6)

Posted 4/29/2014 12:15 AM (GMT 0)
Hi,

I was dx in October 2013 after being admitted to emergency for complete urinary blockage. I was advised to see a urologist who ran some blood tests and found that my psa was 187.5.  I had recently been fired from a job and had no insurance and the thought of prostate cancer without insurance was devastating. That was resolved and I found another urologist that did all the tests and confirmed that I had prostate cancer.  I was referred for a bone scan where two hotspots were found. a subsequent biopsy of both spots were negative and I elected to have a radical prostatectomy. The surgeon told me he was going wide and would not spare my nerves. Surgery was performed on 2/19/2014 and I was incontinent for about two days. No erectile function at all. Depressing but still wouldn't be able to get one if I were dead.

While I may still have metastic cancer, at least the source of my cancer has been removed and I hope that hormone therapy and possible chemotherapy will eradicate it. My current treatment post RALP is 50mg of Bicalutamide, 22mg of leuprolide every 90 days and 20 mg of sildenafal.

Age 54

DX 10/04/2013

PSA 187.5

Hormone therapy 12/17/2013

Gleason Score 9 (5+4)

seminal vesicle involement

pathology T3c

Posted 4/29/2014 12:33 AM (GMT 0)
Ronnie,

Although some may disagree, with your numbers, I would look into substituting the surgery component of your treatment with HDR Brachytherapy. With the cancer already outside the prostate, radiation may be a better choice since it is able to target areas around the prostate without the side effects of surgery (ED and incontinence). A 6-18 month concurrent course of HT, the HDR BT, and follow-up IMRT has a very high cure rate with lower side effects than the surgery combo.

I would highly suggest you find a medical oncologist to head your team, since starting HT should immediately put the cancer in remission and you want to be monitored properly. Then you have plenty of time to research all your options for primary treatment. Whatever you decide, you have come to the right place.

Good luck!
Posted 4/29/2014 12:41 AM (GMT 0)
Sierraluvr, I have also been told by the doctor the nerves will likely not be spared. He doesn't believe it's spread to the lymph glands yet. I hope he's right.

Jacknsan, I asked him about starting HT and Radiology first. He told me it was unlikely I would be able to have the surgery option if I did this and waited. I will certainly research it though as surgery was the one thing I wanted to avoid (if it didn't affect my chances).
Posted 4/29/2014 12:53 AM (GMT 0)
Ronnie,

I also think you should consider radiation over surgery.

Surgery was NOT an option for my husband at first because they had to shrink the tumor. Once the tumor was de-bulked, surgery would have taken his bladder also.

So far with radiation and HT, his PSA is staying undetectable and his plumbing still works!

Best wishes in whatever you decide.

Post Edited (MsWorryWart) : 4/28/2014 8:26:01 PM (GMT-6)

Posted 4/29/2014 1:11 AM (GMT 0)
MsWorryWart, your husband had similar stats to mine but was unfortunately a little further along (T4). It's actually shocked me how many men in their forties have this disease. For the sake of a simple blood test for PSA levels (I know they're not fullproof at lower levels but when they are over 30 you have cancer).

I do have a lot to think about between now and Friday 9th although the surgeon was adamant he wanted to do the surgery (it's hard to imagine going against his advice).

I wish you and your husband the very best and I'm glad he's doing well.
Posted 4/29/2014 2:28 AM (GMT 0)
Thanks Ronnie!

Actually, he did have PSA test starting at 40. At 42, his general practitioner failed to mention he had exceeded the 0-4 threshold. Was a major mess up, needless to say.
Posted 4/29/2014 9:23 AM (GMT 0)
Hi Ronnie,

That really is great news about the scans.

Have you also had a consultation with an oncologist yet? At the time of your diagnosis with the NHS you should have been given access to a surgeon (I am presuming this is the consultant you met with yesterday), a radiologist and an oncologist. Something us PCa members learnt very quickly during our journeys is that surgeons will generally favour surgery, radiologist will generally favour radiation treatment – it is what they do and what they believe in. An oncologist won’t necessarily favour either, just what he/she feels will best deal with your personal PCa situation. The oncologist may well feel your best bet will be the surgery then radiation/HT route but make sure you find that out before committing to surgery and the additional SE’s you’ll be dealing with.

Now go prepare for battle Ronnie, you can and will beat this!

All the best to you and keep us updated.
Susan
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