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Posted 12/10/2014 8:46 PM (GMT 0)
Does anyone know if you are certain to get bone pain if you have bone mets?
Posted 12/10/2014 9:04 PM (GMT 0)
I recently had a PSA of 460. My first test ever. I am still waiting to get a biopsy. I have been reading that with advanced PCa you get bone mets and pain.
Posted 12/10/2014 9:13 PM (GMT 0)
I have shooting bone pain throughout my body with no confirmed bone mets. I have heard that a deficiency in vitamin D can cause pain too. I have heArd that pain caused by metastic cancer is very painful. The kind of pain that keeps you up at night.
Posted 12/10/2014 9:16 PM (GMT 0)
Sorry to hear about your PSA. That's not good. The advance PC guys will be on the thread soon with better information. Could you share some more details about yourself, age? It would help us give you better information and support.

You do need that biopsy. Please let us know what the report is.

As scary as it sounds, bone pain isn't in your future for a long time, if ever. It's very possible you have mets, but a doctor will need to do testing to confirm that. While your PSA is high, there are a lot of treatments out there to knock the beast down and keep it at bay for years. We have members here who've had much high PSA numbers and are still around for years (4,6, 8 more) living and enjoying a pain free life. It won't be fun, but you've got plenty of reason to hope that you can be treated.

Right now what you need to do is to learn everything you can about this PC. Checkout the sticky thread at the top of the forum. And ask any and all questions you have - we're here most days.

Hang in there and keep us updated on your progress,
Andrew
Posted 12/10/2014 9:32 PM (GMT 0)
I am 52. I have my biopsy scheduled for the 16th. I will have bone an MRI scans soon after. My urologist said he found lumps with the DRE. Would the plan be for me to have external radiation and HT?
Posted 12/10/2014 9:45 PM (GMT 0)
Too early to say for sure. Depends on what the scans and biopsy show. HT for sure. Sometimes they do surgery or some form of radiation to "de-bulk the tumor" or reduce the tumor load. If they can see a met they can zap with beam radiation sometimes they'll do that (not all are visible and not all are in a good place to hit with radiation).

I could see the doc recommending a bit of radiation with HT. Wouldn't be a bad way to start treatment although I can hear arguments against do radiation and just going with the HT.

It's a punch to the gut to learn you've got to deal with this and the waiting for test results is a killer for sure, but hang in there and get the tests done. Then the treatment path will be clearer. Also do get an second opinion or two before deciding on a treatment plan.

Are you working with a medical oncologist yet? After the biopsy you may want to consider having a consult with an oncologist who specializes in PC. The guys here could make some recommendations.

Hang in there,
Andrew
Posted 12/10/2014 9:55 PM (GMT 0)

InTheShop said...
but yes if PC gets advanced enough, you get pain and you die.


I think that was a bit harsh Andrew. There are guys here with very advanced PC and bone mets but still writing here many years after there dx. Dont scare the poor guy like that, he is new here smilewinkgrin

Hi CADguy and welcome to Healing Well. Sorry you feel the need to be here, but glad you found us. You will find us a great bunch of guys and girls, willing to help and offer advice wherever we can.

As Andrew has said, if you can share a bit more of your history it will help the more experienced guys here to offer the appropriate advice. How long have you had this pain and where is it? Normally the pain would be in the lower back, pelvic region and hips. It will also be at its worst normally at night giving you restless sleep patterns. With a PSA reading that high you will certainly require a biopsy, but we have one member here who had very advanced PC with a PSA of over 3000 and he is still with us 8 years down the road, so try not to panic just yet. Easy to say I know, but we have all been where you are right now. The waiting is a killer.

Hang in there, the big guns will be along shortly with some good advice.
Posted 12/10/2014 10:41 PM (GMT 0)
CADguy

Sorry to hear of your high PSA, However, you maybe jumping to conclusions a bit early, without a biopsy and scans it is very difficult to know what is going on, I would get a retest on the PSA and remember no sex, bike or horse riding for 4-5 days before the test.
Your DRE maybe abnormal but in my opinion you do need the other tests to diagnose PC. The killer as others have said is waiting for results, personally I am on a "hot tin roof" every time I am waiting for results, even a simple PSA. My oncologist has jokingly said to me he won't give me the results, he tries to tell me let him worry about the numbers etc ....easy for him to say.

In my case my psa was 200 on first test in July 2010 and 7 days later was 254, my biopsy showed Gleason 9 which is high grade and my scans showed metastized PC to ribs ,pelvic area and some in my legs. My treatment was ADT (Zoladex) and initially Casudex for 30 days. This dropped my PSA to 3.2 over 8 months. Then it steadilly increased, I started Xtandi in April 2014 and my PSA dropped from 22 down to 0.24 in October.

I had no bone pain except for "old" age and sporting wear and tear, I was working full time until August 2014 when I retired at 70. Except for the urinary and side effects from the treatment, at this stage wouldn't know I had advanced PC. Also not to mention the mental torture that you go through.

I am only one but it is now 4 1/2 years since my diagnosis and my current PSA is lower than 15 years ago and my scans are stable. So what I am trying to say yes it is worrying but you have a long way to go yet.

Good luck and best wishes for Christmas and the new year.
Posted 12/10/2014 11:42 PM (GMT 0)
My husband has bone mets all over his axial skeleton and skull. They are apparently much worse in the past six months, however, he has no bone pain. He sometimes gets tingling in the collarbone that led to his diagnosis and we asked for this to be irradiated just to keep it quiet. The two oncologists keep asking, "Are you SURE you don't have any discomfort?" as if this is something unusual but I know another fellow with bone mets who also has no pain. The "only" time my husband had pain, and it was bad pain, is when a lytic (dissolving) met in his skull aggravated the abducens nerve right adjacent to it. That was also taken care of by radiation. In your case, I'd listen to RangerTug and others. It's not a picnic, but it's not all doom and gloom either.
Wishing you the very best for the holidays and beyond. Moonlitnight and Don
Posted 12/11/2014 12:03 AM (GMT 0)
Nothing I can add to the others comments, except welcome and hope your stay here is short. Me telling you not to worry is like a bear telling you not to take a crap in the woods, so I won't bother.

But remember, having PC! If you do have it, which so far you don't know that you do, is not a death sentence, even with advanced PC, it can and it WILL, be arrested, for a long time.

Good luck, keep us posted CADguy
Posted 12/11/2014 12:29 AM (GMT 0)
CADguy,

Thanks for seeking information and support. You are in the right place. No doubt you have been researching this in the hours since your PSA reading. You understand that you most assuredly have prostate cancer with such a high PSA. First, understand that one of our brothers, Todd1963, was diagnosed more than eight years ago with PSA of 3216 and both bone and visceral mets. He was 42 at the time.    Thankfully today his PSA is undetectable and he can whip most anyone on this forum. So don't despair.

The biopsy will confirm that and provide valuable information regarding the Gleason score that will give you an indication as to the level of aggression the cancer may exhibit. You will also have a series of bone and CT scans to determine if there are any mets that can be identified. All this will be important to determine your initial treatment. As for pain from bone mets, yes it is normal and it can get bad. Todd was pretty much doubled over which is what prompted him to go to the doctor. But, you haven't experienced any pain at this point, so with treatment you shouldn't have problems for some time, if ever.

Right now I advise you to seek information so you can be decisive in your treatment approach. We have a lot of personal experience and some very high knowledge people on this forum that can help. There are no stupid questions and we have great patience with newcomers....as we were in your situation as well.

Please research medical oncologists in your area that are good at prostate cancer. Your PSA alone indicates very high risk and potentially advanced cancer that may require aggressive treatment. The good news is that there are some wonderful treatments that can be very effective. Plus your age is on your side. Immediately, I suggest you get your overall physical and mental health in the best possible condition. Diet, exercise, meditation, faith and most of all love with your family and friend will put you in the best position to fight this disease.

Best wishes,

Jack
Posted 12/11/2014 1:56 AM (GMT 0)
Welcome CADguy, you've come to a great source of experience. My hip bone pain is what drove me to the doc and my diagnosis, with mets on the hip. However, I also have lesions on a number of other bone locations that have never caused me any pain. In my opinion, any assumption that PC that has spread to the bone will cause pain, is a wrong one.

That is a high PSA, but until you get a biopsy and scans, you won't have a full picture of your condition. As many have suggested, start thinking about a medical oncologist (great if they specialize in PC). Be aware that some Uro's feel they are prepared to handle advanced cases, and may offer just ADT (HT) therapy as a way forward. You may have to press for a consult with a medical oncologist as I did. My Uro was not very forthcoming with information, if yours does not share gleason score, number of positive cores etc, you need to get a copy of the biopsy report (may seem Greek when you read it, but we can help with that)

Come back with the details of your biopsy and scans, and you'll get some of the best lessons learned advice found anywhere.

My best to you, we're here to help.
Posted 12/11/2014 4:52 AM (GMT 0)
It depends on the person I suppose. I am an avid jogger (30+years) and even though I have bone mats I do not have associated pain from them. Please get all of the appropriate testing done to exclude them. This is the only way you can find out..
Posted 12/11/2014 7:26 AM (GMT 0)
Welcome CADguy
I originally had pain in my hip, like Adjust above. My hip pain has never really resolved but my pubic bone has been nearly replaced with new bone due to aggressive treatments.
I think that there are many causes of pain for guys with prostate cancer and mets. The cancer can cause bone pain but not in all cases. I have pain from some resolved met locations but other areas with no pain. Unfortunately, I also think that treatments may cause more pain than the cancer. I do experience bone, muscle and joint pain that I attribute to ADT2. I had 2 surgeries and radiation in 2014 that may exacerbate my discomfort. In addition, I am on a statin that can also cause some of these side effects.
I would not doubt that as I get older some of these pains will remain. But, as I continue to recover, hopefully there will be more distinction between the cancer related pain and just the normal aches and pains of aging (arthritis, cartilage issues in knees & hips, etc.).
You've got a high PSA but as mentioned above, check out the stories of Todd and others who have managed even higher #'s. Good luck to you and hope that you get some very manageable news next week.
Take care,
Posted 12/11/2014 7:00 PM (GMT 0)
Thank you all for your advice and encouragement. I have a lot to think about and plan for. Adjust, I will be looking at finding an oncologist that, hopefully specializes in PCa.

If you have any suggested doctors or PCa clinics that you have had good experience with, please share your stories.

Happy holidays.
Posted 12/11/2014 7:18 PM (GMT 0)
Not sure where you're located, but one the best places for oncologists specializing in prostate cancer is Dr Scholz's office in the Los Angeles area. I'm a patient on one of his colleagues, Dr Lam, I couldn't be happier. They can consult with you by phone if you're not local, although some will travel there. (I happen to be local.)

But let's not get too ahead of yourself. First off, let's see how the biopsy goes. That said, with the high PSA it does make sense to start learning as much as you can.

Good luck and we're here to help.
Posted 12/11/2014 7:45 PM (GMT 0)
I am actually In northern Ohio. I have been looking at the Cleveland clinic. It is about a 2 1/2 hour drive for me. Yes, I am getting ahead of the game, but I do want to be prepared.
Posted 12/11/2014 11:48 PM (GMT 0)
CADguy
The Boy Scouts motto "Be Prepared" is definately the way to go. There is very good information on this forum and some very learned people who can give you very good advice.

The other advice I can offer is to take your partner or friend with you to help remember what the medic is telling you, also have a written list of questions that you want to ask. Reading the Newly diagnosed information in the forum (1st Post) would be a good start. Again this is all assuming you are diagnosed with PC.

Hopefully you have already been given antibiotics to take prior to your biopsy,

From my experience I was in total shock and a daze when told that I had PC I was on my own and hardly remember leaving the surgery and getting home, I sat at home for a day in a daze not knowing what or where to go next. I was totally unprepared. I hardly remembered a thing from the initial consultation, I didn't know anything about PC so didn't know what sort of questions to ask but wouldn't have remembered anyway. Also the urologist was not very forthcoming with information, I have subsequently changed urologist. Now I am mainly under the care of an oncologist.


All the Best

Geoff
Posted 12/11/2014 11:54 PM (GMT 0)
Justified scold on the shop man Casper. But we all get newbie fatigue at times... he stay shamed, but! Dats da good ting, yeh? btw did you ever figger the my riddle to you. I lose myself in these thread and don't get back to them at time. Not the mum one, I just wanted to impress my england Pop culture with that one.
Posted 12/12/2014 10:59 PM (GMT 0)

logoslidat said...
Justified scold on the shop man Casper. But we all get newbie fatigue at times... he stay shamed, but! Dats da good ting, yeh? btw did you ever figger the my riddle to you. I lose myself in these thread and don't get back to them at time. Not the mum one, I just wanted to impress my england Pop culture with that one.


logo. I am not sure what post you are talking about. Or is this post yet another riddle about previous riddle? (Casper bangs his head against the wall) I read your posts several times trying to understand them. But like a good oil painting, each time you view it you see something different. From Van Gogh to Van Logo turn
Posted 12/13/2014 12:13 AM (GMT 0)
Caspar, he was referring to this one.

At least it got you to stop scolding me Logo tongue


Casper555 said...

InTheShop said...
but yes if PC gets advanced enough, you get pain and you die.


I think that was a bit harsh Andrew. There are guys here with very advanced PC and bone mets but still writing here many years after there dx. Dont scare the poor guy like that, he is new here smilewinkgrin
Posted 12/13/2014 12:51 AM (GMT 0)

logoslidat said...
btw did you ever figger the my riddle to you. I lose myself in these thread and don't get back to them at time. Not the mum one, I just wanted to impress my england Pop culture with that one.


Ahh, a misunderstanding. I was talking about this one.
Posted 12/13/2014 3:32 AM (GMT 0)
Hello again, I am having some pain once in a while in my lower spine, pelvis and in my hips. Not always but when I lay down from time to time. This is a recent development. I don't know of it is PCa related or not. Another problem that has been ongoing for some time is loss of appetite and weight loss. I will be working with my dr. To solve that one. I am hoping that once I get started with rad and HT I will start feeling better. Any thoughts?
Posted 12/13/2014 4:04 AM (GMT 0)
Cadbury,

Once you know more info. and get a plan together things will calm down...things might seem overwhelming at the moment...but hang in there...

I thought every ache and pain was related....if it is directly related, yes, therapies will help with pain...

Again...hang in there...

Jerry
Posted 12/13/2014 4:20 AM (GMT 0)
CADGuy

Sorry you are having these pains.
I have a bit of advice for you. Try not to equate each ache and pain with a diagnosis or potential diagnosis. It's good to be alert to the pain but be careful not to worry that every ache and pain is related. It's very likely that your pain is unrelated to prostate cancer.

Here's an idea. Keep a journal or even a chart that lists your symptoms and eventually, side effects, if applicable. This will help you to identify your pains and monitor them. You can rate them on a 1-10 scale and compare the stats over time. I found that this is a good way to track the pain for yourself and also have information for your doctors.

Your biopsy is next week. That will be very telling for where to go from here. I'm still hoping that you get very favorable results. Try not to worry and make the best of your weekend.

Take care,
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