New Person Nervous

Welcome to HW, sorry you need to be talking to us.

That's not a good PSA number. I am not a doctor (just some random guy on the internet) but you'll not be getting good news from the biopsy. Prepare yourself for that. Waiting is going to be a killer - do something to distract your mind from worry. There isn't much you can really do right now except wait for the results so you have the data to make a decision on what to do next.

It's more than just a little shock to the system to get this kind of news. Take some time to deal with the emotional/mental side of this thing too. Take some time to educate yourself - there are great books out there and checkout the sticky threads on the top of the forum for suggestions for new comers.

While it looks bad, there is some reason for hope. Even if it's moved to the bone, there are plenty of treatments that can help keep the beast at bay for a very long time. We have members here who've had numbers as bad as yours and they've been around for a very long time (years and years).

At this stage it's very uncertain, expect that you'll likely need some kind of treatment.

Hang in there and let us know what the biopsy results are.

Andrew

I don't know what kind of relationship you have with your urologist who did the biopsy, but if I were in your shoes I would call the office and ask to speak to his/her nurse. Tell the nurse you are worried and would really like the doctor to call you as soon as the results of your biopsy are available. Assure them you will keep your appointment regardless of the outcome. I've always been told it takes 2 weeks for the biopsy results, but I know from experience it does not. It's more like a week. The last biopsy I had was at Duke and it was just the 2nd time I had met the doctor. He too made an appointment for 2 weeks after the biopsy. I knew he was going to send it to Duke's pathology lab so I called them after a week and they faxed it to me. I was a little surprised at how easy it was to get it, but the technician reminded me it was my lab report so I was entitled to it. My local urologist always calls with news, good or bad.

I'm with Peter on betting it's probably not cancer that's causing your big jump in PSA or the semen blood.

Welcome Traveler. I have no further words of wisdom than what any one else has said. On that note... be assured that there is always some one here to talk to. This is the best support group you could ever have. Good luck.

Slink

Hi,

Your circumstances and numbers are similar to mine except that you are about 5 years younger than me. If the biopsy comes back positive, a bone scan will likely be ordered. if there are any hotspots, those areas will need to be biopsied. My doctor pushed for surgery for me and for the most part I am glad he did. When my bone scan came back, the Doc put me on hormone therapy immediately. Casodex and Lupron. I am now off the ADT and recovery from surgery was slow but I feel pretty good now. Just want to let you know that even with those numbers there is still hope. Don't give up.

Traveling_Guy - good luck on the results. I'm there with you, Uro told me to call in a week. On the edge of my seat. Hope we both get good news. This place (healingwell) is a huge help.

I disagree with the the prostatitus theory. If the second psa was recent to the first maybe, but with 2 and 1/4 years interval, I would say it is cancer. I would also say that the hip pain is from overtraining and my bet is the bonescans will be negative. Having said that the cancer probably systemic which means you will be in a treatment mode of some kind for the rest of your life. Todays treatment can keep you alive, without symptoms for years if not decades. Do not stop training except with conditions, that you as a marathoner are familiar with, so I will not go into them here. Your fitness level will be , in my view, the single most important data point in the journey ahead. travlin guy, you can stay ahead of this disease for a long , long time, but do get yourself a top urological oncologist. Do not stay with a local urologist for treatment. I do not think I am getting ahead of myself or you with this advice. Others may. I don't want to see you take another fall after the biopsy. I hope am wrong, as you do, i'm sure. I just don't think I am. BTW 2 weeks is an awful long time, for results, an awful long time. My instincts tell me things about your doctor that are disturbing. To me there is no reason period, for a 2 wek wait. MY local uro was not the brightest lite in the sky and even there it only took 48-72 hours from biopsy to diagnosis. Just absorb the situation and trust me on this, this is NOT a death sentence, your life will change, but ultimately you will get the better end.

I should also add that I live in Canada, so I think our services differ from the U.S - I think most of the replies from people are likely U.S. residents. My urologist is considered the best in our province. Was trained in Cleveland Urological clinic and worked there several years. As soon as he received my report from my PSA test, he had his receptionist call me in for an consult - it was not an office visit day it was his surgery day, but he had me in right after he completed surgery, so I believe he is dedicated to his patients and simply gave the "Canadian standard" 2 week time frame for results in case the pathology department takes that long. I am certain he will have me in as soon as he received the report, but I will follow up as well.
So happy I joined the site...a lot of great responses for me to read through and learn more about other peoples experiences and all the opinions are appreciated. Thanks!

Bad news came today.

Gleason score 4+5 = 9

10 of 12 cores positive

Histologic Type: Adenocarcinoma (acinar, not otherwise specified)

Proportion (%) of prostatic tissue involved by tumour: 40

Proportion (%) of prostatic tissue involved by tumour for core with the greatest amount of tumour:100

Additional Pathologic Findings: High-grade prostatic intraepithelial neoplasia (PIN)

Bone scan and Cat scan scheduled in 2 days. Appointment with Oncologist in 4 days. Follow up with Urologist in 4-6 days pending all reports arrival.

Just home now trying to take it all in. Bummer news.

Pain in hip, so I feel like it has gone to bone already.

PSA was 110 and 1 week later rose to 126, so they are convinced this is aggressive cancer.

Will be researching info I received to try to better understand things.

More worried about what my family will go through watching me go through this then I am worried about what is coming.

 

Travling_guy,

Really sorry to hear of your recent results, that totally sucks. You will have to wait for those scan results in order to get a complete diagnosis and decide what next. Your doc sounds like he is trying to move on with the testing pretty quickly, which is great; if he was not I would have suggested you talk to him about starting some ADT, like Casodex, while you wait for test results.

One thing you might also look into while waiting for those scans is a relatively new approach to advance high-volume disease and the use of chemo early (see am.asco.org/adding-chemotherapy-hormone-therapy-improved-survival-men-newly-metastatic-prostate-cancer. Hopefully your doc is up on this, if not, you may need to educate him.

Hang in there, lots of options in front of you. Keep us posted on your scan results.

All my best,

Received bone scan today. As expected, metastasis is confirmed in pelvis, T10,L2, and 2 ribs. CT scan report not available today but Oncologist looked at it and said the only additional concern from the CT is there is a 9mm spot on the lower left lung. It is inconclusive if that is cancer. They are scheduling another CT to relook at both lungs.
Met with Oncologist today for first time. The team of Oncologists and Urologist need this next CT scan to finalize the plan. He wants to start me on hormone therapy now - I just have to confirm which drug my insurance company will pay for - Firmagon or Lupron+Casodex. Hopefully my insurance pays for one of them - expensive stuff. That will start next week if I get the financial part sorted by tomorrow. As a reminder - I am Canadian, but I need to be over 55 for the health care to pay for it - under 55 health care will not pay for hormone therapy - bummer. Don't want to spend my families money on this if I can avoid it.
Radiation to the prostate will likely start in approx. 1 month - likely after Christmas now. They are also considering if Chemo should be started sooner rather then later. The lung scan may help to decide this and the Chemo Oncologist has not reviewed my scans yet to see if he supports that plan or wants to wait to see how the Hormone therapy works.
So - no complete plan yet, and understandable since my bone scan and CT were only done yesterday - but happy to know the report for the bone scan came that fast and the Oncologist already met with me and discussed my situation - I think that is good from what I read about other peoples Dr issues on here.
Hip pain is increasing. Fairly steady low pain, then increases for a couple hours, then goes down, Taking Advil 1-2 times a day that seems to help. Trying to only take meds when I feel I need it. Any suggestions for best med for bone pain?
I hope this works....need to hang around for a while longer.
Thanks everyone for your support through this past month. This site helped me have hope!

Sorry to hear about that scan. I hope the money thing works out. The HT will go a long way towards reducing that PSA. Yours is a case where you have to hit it with everything you've got.

Have you talked to your oncologist about the pain? Advil's a good drug. I take it all the time for joint pain and it works for me. You might need something different or stronger. Best to get the doc's recommendation.

Let us know what happens with the CT scan.

Hang in there, it's a tough road but you're doing fine so far.

Andrew

Thank you Michael, Andrew and FoxRun for the quick replies. I do have Green Shield, but it is a low conversion plan. So maximum they pay for drugs per year is $750. So that will not go far, but at least it is something.
The comment I made about if I was over 55 the hormone therapy would be paid for is because our OHIP (government health insurance) would pay for it all if I was over 55. Seems like a crazy rule. I need this as much as someone over 55 dies. But likely this is because of system cheating in the past....or perhaps just cost savings?
In Ontario - or at least at my cancer centre here, they do have a compassionate plan that I may be eligible for - that is only for Lupron, so I may get lucky and be get that for at least a couple shots. If I worked at a larger company, I would of had a better benefit plan, but I work for a company in from Japan and I am their only employee here. So my benefit plan is very minimal. Never thought it would haunt me now for agreeing to that.
Another point I will make - I actually work out of a U.S. office - live in Canada. I have a Green Card and pay into Medi care. Would Medi care have anything to help with this? I doubt it as I think it is not a "drug plan".
sorry to babble on - just trying to create the least impact to my family - its hard enough on them with this cancer now and I don't want to hurt them financially too.