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Does anybody understand CaPStage Risk Assessment?

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Posted 12/27/2014 5:16 AM (GMT 0)
This is my first post and like most others, I have a lot of questions about being newly diagnosed with Stage 2 Prostate Cancer.

My PSA is 8.7. Out of 12 biopsies 7 came back positive. My Gleason scores were Left Lateral 3 + 5 76%, Left Base 4 + 4 10%, Left Lateral Mid 4 + 3 90%, Left Lateral Apex 4 + 3 44%, Left Mid 4 + 3 40%, Right Lateral Mid 3 + 4 40%. All six of the left biopsies were malignant, only one of the six on the right side was malignant. Previous PSA around one year ago was 4.6.

I have a copy of the pathology report and it says nothing about staging. The urologist told me it was Stage 2 and gave me a lot of paperwork to read about it. Do you understand the CaPStage Risk Assessment? Mine shows 96.6% above average with the baseline being 8.8%? The node involvement: 998.1% increased risk? I don't understand what any of this means. Is this about metastasis?
Posted 12/27/2014 1:14 PM (GMT 0)
Easy,

Welcome to Healing Well...sorry young have to deal with this. But, you have found one of the best places for information and support.

Not exactly sure what you're refererring to...if it's a test to show the risk for PC...well you already know that. To determine if cancer is contained in just the prostate...scans can help determine this. Have you had a Bone scan and ct scan yet?

Hang in there...I'm sure you are "uneasy" about things at the moment....but you'll get a better picture of things and then can evaluate things and kick this thing back...

Jerry
Posted 12/27/2014 2:05 PM (GMT 0)
Easy,
This may help:

www.uroweb.org/fileadmin/tx_eauguidelines/2008/Full/2008_Prostate_Cancer.pdf
Posted 12/27/2014 5:30 PM (GMT 0)
CAPRA is a risk stratification system developed by UCSF. It is explained here.You should have gotten a score that equates to a certain risk of recurrence after treatment. Because of your Gleason 8, and your high percent of cancerous cores, you are considered high risk. If your CAPRA score was 6, this means that about a third of men who had surgery needed to be re-treated with radiation and/or hormone therapy. However the risk of metastases or death within 5 years is only 3%. The risk of lymph node involvement is obviously not 998.1%, as you wrote. Perhaps you can correct that?

Your doctor has probably ordered a bone scan and a CT scan to check for evidence of mets. Assuming you are indeed Stage 2, those tests will be negative.

What it means in practical terms is that you have several potential curative options that it is up to you to explore. You should act quickly as those high risk cancers can move quickly. It is probably a good idea to start with hormone therapy - they can give you a 4-month shot, which will stop the cancer in its tracks for now, and give you more time. If you decide on any kind of radiation therapy, they would want you to have that a couple of months before treatment anyway.

Then locate a radiation oncologist, perhaps two. I have been especially impressed by the results of a combination of high dose rate brachytherapy and external beam radiation. Some are experimenting with another kind of high dose ration called SBRT for high risk. If you are Stage 2 (contained within the prostate), surgery may be a good option as well, so you should be talking to a high-volume surgeon. The decision on which therapy to pursue will be yours to make.

- Allen
Posted 12/27/2014 6:04 PM (GMT 0)
Welcome to HW, sorry you need to be here.

You've got some stuff to work on there. Best to start making the rounds of the doctors - RO should be next on your list. The question of mets is a difficult one as at your PSA level they can be hard to find.

As bad as things might look now, you've got plenty of options and every reason to hope for a positive outcome. Best to start getting the second opinions and consultations done.

We're here most days, so ask all the questions you have,
Andrew
Posted 12/28/2014 11:18 PM (GMT 0)
It's my understanding that staging after biopsy is incomplete due to the sampling nature of biopsy which only takes v
Cores samples from the prostate and can't determine if PCa had spread . Only pathology after RP can do that. So I went from stage 1 to stage 3 after RP which examines everything removed including prostate, seminal vesicles, and lymph nodes.
Bob
Posted 1/3/2015 12:58 PM (GMT 0)
I wanted to update everyone on my current status. I went in for a CT and bone scan on December 28 and received a call from the nurse the following day that the scans were negative for metastasis. I was overjoyed to receive such encouraging news! I now know that my cancer is curable. I meet with my urologist on January 8th to determine my treatment. I will continue to check in and let you know how I am doing. Thank you for your encouraging words.
Posted 1/3/2015 2:13 PM (GMT 0)
Easy, glad to hear that your mind has been relieved!! That's half the battle won! Keep us updated!

Cheers, Doug
Posted 1/26/2015 12:44 AM (GMT 0)
Good evening,

I wanted to update everyone on my status. I have been to see a oncologist and a radiologist. My urologist recommended I have my prostate removed. He reviewed my options which were removal or 44 sessions of radiation. He recommended I speak with the two specialist to see what they recommended but encouraged me to make a decision within three - four weeks. The oncologist scheduled surgery on January 29th for removal. He shared that I would need a catheter for 10 days and possible a pad for up to a year after. At the time they remove the prostate they will biopsy the surrounding area and lymph's to ensure the cancer is not outside of my prostate. He shared that it is impossible to ensure this area is free of cancer without going in and doing a biopsy because micro cancer cannot be read on the scans. Two weeks later at the radiologist office he also reviewed my two options. At this point I am leaning toward the radiation treatments even though there is no guarantee. I am not certain I can go through the cathedral, the leakage and possible ED for the remainder of my life.

As for the 3 +5 Gleason score it was confirmed and this was an issue. As the doctor explained, the 5 is the highest score you can possible receive on the Gleason scoring.

Are any of you in the same predicament that I am in? If so, please share your experience with removal versus the radiation treatment. What are the different side effects I am looking at for each?

I appreciate your input.

Jerry
Posted 1/26/2015 1:07 AM (GMT 0)
Hi Jerry,

my husband had his prostate removed early november. he is very close to continence now. He is gleason 9 with the cancer having escaped the prostate. Surgery at his stage is controversial, but his uro and radiologist both advised it. His erectile nerves were both removed as they had cancer in them.

SEs: permanent ED,
still some incontinence which looks like it will be gone soon,
6 scars on his stomach,
internal discomfort which prevents any but the gentlest exercise. This will be gone in time.

otherwise he feels really good.

Sophie
Posted 1/26/2015 1:32 AM (GMT 0)
Easy, you should have your slides sent out for a second opinion, to a pathology lab that is expert in Prostate cells. Johns Hopkins, dr Epstein, or Bostwick labs, David Bostwick. That 3+5 is unusual. I also had a GLeason 3+5 and sent slides to dr Epsetin, and it was changed to GLeason 6 (3+3) which was confirmed on third opinion by Memorial Sloan Kettering.

With that said, as Tall Allen (probably the most technically knowledgeable guy here), said, you need to do something soon considering all the GLeason 7 (4+3).

As far as your doctors comments about needing a pad for a year, that is not a given. It's possible, everyone is different but many men regain full continence in months.
Surprised your Dr didn't talk to you about Brachytherapy

If you can, you should pick up or download a copy of a book by Dr Patrick Walsh "Guide to surviving Prostate Cancer" and another by dr Mark Scholz "Invasion of the Prostate Snatcher"
Two different perspectives, but with these two books you will have a good solid basic education of what you are facing and be better able to make a decision.

You may be past all this at this point I don't know, if so, apologies.
I somehow missed your first post, as I was preparing for my own surgery.
Good luck and keep us posted
Posted 1/26/2015 1:10 PM (GMT 0)
Good morning Sophie and thank you for your response. I have a few questions if that is ok. Did they discover the cancer outside of his prostate during surgery or did he have scans which uncovered the escaped cancer? I am assuming the cancer in the erectile nerves was also found when they did the surgery?

Was radiation an option for him?



SophieW said...
Hi Jerry,

my husband had his prostate removed early november. he is very close to continence now. He is gleason 9 with the cancer having escaped the prostate. Surgery at his stage is controversial, but his uro and radiologist both advised it. His erectile nerves were both removed as they had cancer in them.

SEs: permanent ED,
still some incontinence which looks like it will be gone soon,
6 scars on his stomach,
internal discomfort which prevents any but the gentlest exercise. This will be gone in time.

otherwise he feels really good.

Sophie

Posted 1/26/2015 1:34 PM (GMT 0)
Good morning and thank you for taking time to respond to my posting. If you could please answer the following questions I would greatly appreciate it.

When you suggest sending out my slides, please tell me how I go about doing this? Will it make a difference in my treatment? My doctor suggested talking to the surgeon and radiologist. I did both and am not sure that I am any further along with the decision making. I know I need to do something soon because I was diagnosed in November. My Gleason scores are - 3 + 5 78%, 4 + 4 10%, 4 + 3 90%, 4 + 3 44%, 4 + 3 40%, 3 + 4 40% and 4 + 3 28%. The other five were benign.

I was only given two options, the surgery and the radiation. Due to the stage of my cancer the urologist said I was not a candidate for the others?

I hope you are recovering and have great success with your surgery.

Jerry


Pratoman said...
Easy, you should have your slides sent out for a second opinion, to a pathology lab that is expert in Prostate cells. Johns Hopkins, dr Epstein, or Bostwick labs, David Bostwick. That 3+5 is unusual. I also had a GLeason 3+5 and sent slides to dr Epsetin, and it was changed to GLeason 6 (3+3) which was confirmed on third opinion by Memorial Sloan Kettering.

With that said, as Tall Allen (probably the most technically knowledgeable guy here), said, you need to do something soon considering all the GLeason 7 (4+3).

As far as your doctors comments about needing a pad for a year, that is not a given. It's possible, everyone is different but many men regain full continence in months.
Surprised your Dr didn't talk to you about Brachytherapy

If you can, you should pick up or download a copy of a book by Dr Patrick Walsh "Guide to surviving Prostate Cancer" and another by dr Mark Scholz "Invasion of the Prostate Snatcher"
Two different perspectives, but with these two books you will have a good solid basic education of what you are facing and be better able to make a decision.

You may be past all this at this point I don't know, if so, apologies.
I somehow missed your first post, as I was preparing for my own surgery.
Good luck and keep us posted

Posted 1/26/2015 2:59 PM (GMT 0)
Jerry, your Urologists office should be able to take care of this, they get these requests all the time. Tell them you want the slides sent out for a second opinion to Dr Jonathan Epstein at Johns Hopkins (or David Bostwick at Bostwick Labs. They should be able to take it from there. But just in case, here is a link to Johns Hopkins Second Opinion Service...

http://www.hopkinsmedicine.org/second_opinion/urology/index.html

From there you can navigate to the info you need.

As far as would it change o make a difference in your treatment, I am not an expert and won't pretend to be. If your Gleasons were all changed to g6 or g7 3+4, , then yes it mght give you more options, or at least more time to make decisions. That's probably a long shot considering how many cores positive you have. But I think its worth a shot.

I had 2 g6'S and a g8 (3+5) and the G8 was downgraded to G6, which changed everything. So am always going to advocate for a second opinion. In your case, others might disagree, and I'd be interested in hearing others comments.
Posted 1/27/2015 12:47 AM (GMT 0)
Thanks Pratoman for the information.

Pratoman said...
Jerry, your Urologists office should be able to take care of this, they get these requests all the time. Tell them you want the slides sent out for a second opinion to Dr Jonathan Epstein at Johns Hopkins (or David Bostwick at Bostwick Labs. They should be able to take it from there. But just in case, here is a link to Johns Hopkins Second Opinion Service...

http://www.hopkinsmedicine.org/second_opinion/urology/index.html

From there you can navigate to the info you need.

As far as would it change o make a difference in your treatment, I am not an expert and won't pretend to be. If your Gleasons were all changed to g6 or g7 3+4, , then yes it mght give you more options, or at least more time to make decisions. That's probably a long shot considering how many cores positive you have. But I think its worth a shot.

I had 2 g6'S and a g8 (3+5) and the G8 was downgraded to G6, which changed everything. So am always going to advocate for a second opinion. In your case, others might disagree, and I'd be interested in hearing others comments.

Posted 2/1/2015 4:20 PM (GMT 0)
I met with the oncologist on Friday and he is sending my slides out for a second opinion. He confirmed if my 3+5 was to be downgraded this would definitely change the treatment.

I will wait to hear back from him and respond accordingly.

Thanks
Posted 2/1/2015 4:31 PM (GMT 0)
Easy, FWIW, when my initial pathology was (3+5), and I was waiting to hear back from JOHNS hopkins on the second opinion, I met with Dr Samadi, one of the more well known surgeons in NYC, and he immediately told me,that you hardly ever see 3+ 5 any more, and it is a high probability that I would get a downgrade on second opinion. And I did.
I don't want to give you false expectations, but it's something to hang your hat on, if it helps.

Also, (I am assuming you sent it to Johns Hopkins?) rather than just wait to receive, or for my urologist to receive, the second opinion results from JH, I waited until 3-4 days after they received the slides, and then called Dr Epsteins office (phone number on the website) . I asked if they could fax me the results, a and after they sent and I signed a release form, I had the results faxed to me within 5 minutes.
After I read it, I had questions and I called and asked to speak with Dr Epstein and he got on the phone and spoke with me. He is very accessible

Hope this helps.
Posted 2/13/2015 3:10 PM (GMT 0)
In reviewing the email from Johns Hopkins Lab, Dr. Jonathan Epstein has changed the 3 + 5 to a 4 + 3. For some reason the lab only sent him five of the 12 slides. I have requested his opinion of all 12. Here is what I received so far:

Gleason Score 4 + 3 = 7 involving 10% of one core, 80% pattern 4.

Gleason Score 4 + 3 = 7 discontinuously involving 50% of one core, 50% pattern 4.

Gleason Score 3 + 4 = 7 involving 80% of one core, extraprostatic extension identified. 40% pattern 4.

Gleason Score 4 + 3 = 7 involving 80% of one core, 30% pattern 4. Perineural Invasion Identified in this case.

Gleason Score 3 + 3 = 6 involving 40% of one core.

It appears the extraprostatic extension identified means the cancer is outside of the prostate?
The perineural invasion identified means the cancer has invaded my nerves?

Any feedback is most appreciated! I must make my treatment decision by Monday.
Posted 2/13/2015 4:09 PM (GMT 0)
Easy,

Your stats are similar to mine. I did the 40 sessions of IMRT mainly because of the G8 and possibility of EPE. I am doing PSA zeros right now. Please don't be forced into making a treatment decision until you are comfortable as you can be with it. You only get one chance. Don't feel beholding to any one uro or RO. Get as many opinions as you need. It's your health and make the decision when you are ready.

Good luck and we are all in your corner.

Carl
Posted 2/13/2015 4:57 PM (GMT 0)
Because of the extraprostatic extension, you are "high risk." I'm surprised he was able to identify that from a biopsy - usually, that's found on an imaging study (MRI or CT scan). The perineural invasion is one more way the cancer can escape, adding to the risk a bit.

But all that leaves you where you were before, except that the extraprostatic extension pretty much rules out surgery. Radiation with a boost to the prostate would be a good choice.

- Allen
Posted 2/15/2015 10:57 PM (GMT 0)
Easy,
The big concern is not the perineural invasion identified DX but, as Allen says, the extraprostatic extension (EPE). It is interesting that EPE was DX just via slides, but Dr. E. is good at reading slides. Some of the biopsy samples must have contained enough outside tissue to allow him to say this.

Because of the EPE, the perineural invasion is something to pay attention to as well. It kind of eliminates surgery (what I was told - I didn't have EPE so I had the surgery option) but there is still options for you to look into. My guess is that your doctor will ask for CT, MRI or other such scan to be sure that EPE is there.

Have you seen you doc with these new results?

Don
_______________________________________________
Age 61 @ DX, 62 Now
DRE: enlarged w/"ridge"
Pre-Op PSA: 6.8
Biopsy: 5 of 14 positive, 12%(3+3),11%(3+3),20%(4+3),5%(3+3),4%(3+3)
da Vinci: 10/17/2014 Both Nerves Spared
Cath: 17 days
Post-Op Path:
Histologic Type: Adenocarcinoma
77gr - 4.5cm x 4.7cm X 4.2cm - 10-20% Involved by tumor
Largest module: 1.6cm Bilateral Lobes
Gleason Grade: 3+3=6 (down from a 4+3=7 in biopsy)
TNM Staging: pT2c pN0 cM0
EPE: Absent, SMI: Absent
Margins: uninvolved, Lymph Nodes all benign
Bladder Neck Negative for Carcinoma
Perineural Invasion - present, Vascular Invasion - present
PSAs: (Roche ECLIA methodology):
01/22/15 - <0.1 (Three Month test)
Posted 2/16/2015 4:27 PM (GMT 0)
Easy E,

We are waiting to hear about your decision. With your diagnosis most of the treatment options are appropriate.
Posted 2/16/2015 5:20 PM (GMT 0)
EasyE,
I've noticed that you haven't gotten that many answers from those of us that, for one reason or another, have elected to forego RP. In my case tha G-9 and rib mets ruled it out. A 4 month shot of Lupron and continued ADT have given me 8 years of relatively normal life and am looking forward to more years with upcoming Xofigo procedure. Something to think about . . . Q
Posted 3/3/2015 3:03 AM (GMT 0)
Just to give an update. I have been to see the oncologist, the surgeon and my urologist. I have decided to do five weeks of external radiation with the internal seeds. I have had the dye injected in my prostate have another MRI tomorrow and will have the markings done the 11th for external radiation. They plan to start the external radiation in a couple of weeks and then inject the seeds.

I will keep you posted as to how I am doing in my journey.

Thanks everyone.
Posted 3/15/2015 1:30 PM (GMT 0)
Good morning,

I must say the process so far has been difficult. I have had so many test run on me and procedures that it seems as if there is no end to all of this. Last week I went in for a volume test so they could determine how many seeds I would need implanted. They will implant between 75-100. The nurse and doctor talked to me about pretty much isolating myself for 2-3 months following the insertion. We even talked about Church and that it was not a good idea to be in close proximity of anyone while I was radioactive. It was best if I sleep alone or try to remain 3 feet away from people. The big surprise was the recommendation to not allow my dog to sit in my lap or close to me during this time. This is difficult enough without having to be so isolated.

Have any of you experienced this?

He also told me it wasn't too late to have the prostate removed. If I change my mind it must be done before the first radiation treatment. We asked him when the treatment would start and he said in about a week in a half. I am not sure why he doesn't have a set date or even when he will know. My friend who has been with me through this entire process is growing weary and frustrated at the uncertainty of the Radiation Oncologist.

I am trying to keep positive. Any suggestions is appreciated.
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