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Posted 5/26/2015 10:12 AM (GMT -5)
Had my 12 core biopsy on 5/5. Two days later I ended up in the hospital with a case of sepsis. Spent 2 days in CCU on IV antibiotics and two days later was sent home with a 14 day course of oral ABX. Just now starting to feel better. While in the hospital my urologist told me that my results came back positive for cancer. He indicated that it was a more aggressive form and that AS would not be an option. He referred me to a doc in Greensboro NC who does RALP.

I have only reviewed a summary of the path report. It indicated left lobe 4/6 positive GS 3+4 25% tissue involvement. At this time I don't know if that means all 4 cores were 3-4 or the worst one was or if all four cores were 25% (that seems unlikely) or was that the worst. Right lobe indicated 2/6 positive GS 3+3 10% tissue.

At first I was pretty calm about the whole thing, but as time has passed I seem to ge getting more stressed. My appt in Greensboro is 6/5. In addition, I have made an appt with a urologist oncologist at Duke for 6/25. At this point everything seems to me moving in slow motion

My local URO indicated that as a result of the infection I could not have any treatment for at least 8 weeks.

Part of me feels that I was slow in getting diagnosed and as a result I seem to want to rush to treatment. I guess trying to make up for lost time.

Any feedback would be appreciated. I assume I have some time to make a good rational decision related to treatment.

Post Edited (Vawolf79) : 5/26/2015 11:06:45 AM (GMT-6)

Posted 5/26/2015 10:32 AM (GMT -5)
Vawolf, welcome to the club no one wants to join. You'll find good answers to all your concerns here. My first suggestion is to seek out the best people you can reasonably get to. Duke has a great reputation as a medical center. I assume you're in Virginia near the NC line?

I'd make appointments with both a surgeon and a radiation oncologist. They really don't know a lot about what the other does, so they can't give you good info about what the other is doing or the probabilities.

When you get the fully written path report, let us know what it says. 3+4 is intermediate risk, so unless an MRI shows extracapsular extension, you should be good with either surgery or radiation as your primary treatment. Most PC experts will tell you that you have up to a few months to settle on your course of treatment. Slowing down is valuable.

I'd also suggest taking a spiral notebook to all your dr visits and take notes...or have someone with you to take notes. Write down your questions before you go. Also, get a big accordion folder to carry all your paper in, you'll get lots.

A few questions to ask your experts:

How many surgeries/radiation treatments have you and your team done?
What is your personal cure rate?
What kind of side effects do you think I'll have, based on what you're seeing in my tests?

Others here may suggest more questions to ask.

Hang in there, the answers will come. You've got at least 8 weeks to make your decision anyway. Take all that time and do your due diligence.
Posted 5/26/2015 11:36 AM (GMT -5)
Vawolf, I was told that if I chose surgery, I would need 8 weeks to heal from the biopsy alone.  I had no infection.  I don't know the wait time for radiation.  In any case, you'll need to do the bone and CT scans before they can prescribe any treatments.  Possibly an MRI of the prostate too.  I spent over two hours in the tube on that one, the machine was over heating and had to shut down to cool off during the process.  If you're fully contained, they'll likely offer either surgery or radiation.  My cancer is intermediate risk, but extensive, 50% involved.  I believe this factored into the +margins.  Had I been aware of the consequences of possible SRT at the time I would've been a bit more open minded to radiation, although, I don't know if I would've acted differently.
Posted 5/26/2015 11:48 AM (GMT -5)
Vawolf, you're doing the right stuff - moving away from your local Uro (who did not inspire confidence giving you sepsis during the biopsy!) to get to a major treatment center is worth it. Finding the right surgeon is WAAAAAY more important than rushing into the procedure.

Best of luck. The odds are incredibly high that you will be just fine!!
Mikey
Posted 5/26/2015 11:48 AM (GMT -5)
Vawolf79,

As diagnoses go, it's not too bad. PC, the kind you have, is usually a very slow growing disease, so you have plenty of time to make a considered decision. Usually they quote the worst core because that's what they call the "index tumor" - the one that really matters.

If you haven't already, please read the sticky on the first page titled "Newly diagnosed? Read here first." In it, you will see a suggestion that you get a second reading on your biopsy slides from Bostwick or Epstein - the acknowledged leaders in prostate cancer pathology. It's a very good idea to do that.

Unlike other cancers where you don't have choices, you have many choices for treatment with prostate cancer, especially for "favorable intermediate risk" which seems to be your kind. It falls to you to seek out and make appointments with doctors in each specialty - surgery, SBRT, LDR brachytherapy and HDR brachytherapy. There's protons and IGRT/IMRT too, although I don't recommend them - not because they're bad, but just because there are better treatments. You can't trust that a doctor in one specialty will know anything about another specialty, although he is sure to have opinions. Part of your job is self-assessment - figuring out what's important to you - that's something no doctor can decide for you. Take your time.
Posted 5/26/2015 12:04 PM (GMT -5)
Thanks for the responses. Already had bone scan and CT since I was in the hospital and stable after the first 2 days my URo figured he would get that done while I was there. Both came back normal.

Believe my sepsis was just bad luck; don't think I can blame the doc. He pretreated me with ABX and while he said the risk was small he did tell me several times that if i started running a fever or chills to go directly to emergency room.
Posted 5/26/2015 12:07 PM (GMT -5)
Forgot to mention I also asked my Uro to send the slides to Bostwick for 2nd opinion.
Posted 5/26/2015 12:52 PM (GMT -5)
Welcome to HW.

You're doing all the right things. Sorry you had to go through that sepsis. It's rare but does happen.

You've got plenty of time to make an informed decision and likely will face the problem of what treatment to do as most of the main line treatments will likely be curative for you.

Hang in there and keep us updated on your progress. Do let us know what Bostwick says.

Andrew
Posted 5/26/2015 8:57 PM (GMT -5)
I'll add my welcome to the forum, not much to add in the way of advice. Just make sure you explore ALL options, and understand the positives, negatives, and side effects of each, before you make a decision.
This is very important so that you won't look back later and say shoulda woulda coulda.
Bostwick is good for second opinion, right up there with Epstein, you are obviously well informed
Do keep us posted, and good luck
Posted 5/26/2015 9:51 PM (GMT -5)
Hi Vawolf,
Sounds as if time is standing still for you right now. It's an interesting phenomonom where you are highly focused on what's presently in front of you. So many others have already given you some great tips and about the only one I would add is to get copies of all your reports. Sometimes the summaries do not include all the information you may want or need. I don't really know why but have found this to be the case. Best wishes to you in whatever treatment plan you choose. Sounds like you have the potential of making great recovery.
Posted 5/26/2015 11:06 PM (GMT -5)
Welcome and sorry you are here, I was you 18 months ago. Take a deep breath, you have some time to decide your next course of action. You'll get good advice and support from this group and we are here to help you. You've already received some great advice, I'll add my own by recomending getting as educated as you can about treatment options. Each one has its own risks and side effects to consider along with a chance of a cure.

best of luck

Pat
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