HealingWell
Search Close Search
☰

New Member Seeking Advice re Treatment

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/14/2016 5:58 AM (GMT -5)
Hello
My PSA of 7.4 led to a biopsy on Dec 14th. Initial analysis reported Gleason 3+4=7 (2x) and 3+3=6 once. Second analysis at Johns Hopkins reported Gleason 3+3=6 (3x).
The Johns Hopkins surgeon suggested using just their analysis, therefore treating me as low risk. Is that reasonable?
He also recommend radiation slightly over surgery due to my age, 73, stating that post-op side effects increase after age 70. I'm now debating between surgery or radiation.
Thanks

Edited to provide subject

Post Edited By Moderator (Tudpock18) : 1/14/2016 7:38:40 AM (GMT-7)

Posted 1/14/2016 6:27 AM (GMT -5)
I'd op for Seeds if that's an option, is this the radiation you have been briefed with?

T
Posted 1/14/2016 6:54 AM (GMT -5)
Hi T

The John Hopkins surgeon said my prostate is too large for seed radiation. It's 62)

R
Posted 1/14/2016 6:55 AM (GMT -5)
Rob, I'd seriously look into active surveillance. At your age and gleason scores, it's entirely likely you'll live a long time and die with PC, not of it. AS I not 'doing nothing'. It's a managed program of regular PSA tests, MRI's, etc. IF something changes for the worse, then you make a more aggressive treatment decision.
Posted 1/14/2016 7:09 AM (GMT -5)
Hi Hal Thanks for the note. I sporadically give thought to Active Surveillance but then consider prior discussions with two urologists, both of whom thought I should actively treat my cancer. I am T2b and one of the biopsy samples was 90%. Without PC my lifespan estimate is 12 - 15 years.

When I talked with the first urologist about taking three to six months to decide on treatment he suggested hormone therapy in the interim but I have not taken that step.
Posted 1/14/2016 7:43 AM (GMT -5)
Rob, sorry to hear about your diagnosis.
I think it's a bit of a tough call, but I'd probably agree with Halbert on AS.
The good news is that a second opinion at Johns Hopkins is considered a gold standard. And so with G6 only, you are cleary in a low risk group
THE 90% of one core may or may not mean anything. I'd assume the T2 clinical staging means you had a positive DRE, because if it meant you had cancer in both lobes of the prostate, JH would not be recommending MRI


Keep in mind that about 30-40% (depending on whose writing you read)of patients who go through surgery, where they can then look at the entire prostate under a microscope, get there Gleason score upgraded to a higher number. For that reason, if I were in your shoes, I'd want a 3T MRI. THIS technology can usually identify higher grade cancers with 90% or better accuracy. If that comes back clean, then AS is probably a great choice for you.

I'd agree that at age 73, surgery is probably not your best option if you do decide to treat, other than AS
REMEMBER, none of us are medical professionals, we are only speaking from what we learned doing our own research when we were diagnosed

Good luck and keep us posted. You'll get lots of info and support here.
Posted 1/14/2016 8:19 AM (GMT -5)
Rob,
One reason the doctor may be recommending HT is that the HT could shrink your prostate to a size that would allow BT. I know that when I was considering BT, the doctor said I would need to do HT first to get my prostate to a size that would allow BT.
Posted 1/14/2016 8:49 AM (GMT -5)
You should also look at High Dose Rate brachytherapy as a large prostate does not limit its use. Also look at SBRT/CyberKnife etc. My brother-in-law was in a similar situation a couple of years ago and used IMRT/IGRT and has done very well with no negative side effects and complete cancer control.

Surgery over age 70 isn't usually done and the former head at Johns Hopkins, Patrick Walsh, simply would not perform it.

For HDR research use www.cetmc.com. This is the website of the pioneer Dr. Jeffrey Demanes who has used HDR since 1981.

Another suggestion is to go to the expert for advice. Surgeons are fine advising surgery, but they are not the radiation expert. Go specifically to the radiation oncologist to talk about his/her specialty. Just as you shouldn't go to the rad onc for surgical advice.
Posted 1/14/2016 9:19 AM (GMT -5)

Rob-234 said...
Hello
My PSA of 7.4 led to a biopsy on Dec 14th. Initial analysis reported Gleason 3+4=7 (2x) and 3+3=6 once. Second analysis at Johns Hopkins reported Gleason 3+3=6 (3x).
The Johns Hopkins surgeon suggested using just their analysis, therefore treating me as low risk. Is that reasonable?
He also recommend radiation slightly over surgery due to my age, 73, stating that post-op side effects increase after age 70. I'm now debating between surgery or radiation.
Thanks

I sincerely believe you might wish to consider adding Active Surveillance to your debate.

JH surgeon is correct, their gleason score of 6 is the one you should be using as a reference. Actually, you need to be aware of several things

1. There are some that think a true Gleason 6 should not be reported as positive for "cancer" due to the fact that a true Gleason 6 will not metastasize.

2. The biopsy process is imperfect since you are only sampling a small portion/area of the prostate. There may be areas of higher (and lower) scoring which the needle cores did not sample.

At age 73, if it were me I would be seriously considering Active Surveillance as a primary option and Radiation only as a secondary option.

I line up pretty much with JNF's thoughts on Radiation. If that becomes the proper path you should look at HDR brachy monotherapy, SBRT along with IMRT/IGRT.

You have plenty of time, mull this over, and over, and over. You only get one shot. Make sure you take the time needed to make the right decision for you.
Posted 1/14/2016 9:22 AM (GMT -5)
Glad I found this site, four responses already today with things I can work on. Thanks!!

Pratoman - Thanks for suggesting mpMRI - it's new to me. I've already done a search and found a nearby (Sarasota, FL) provider.
I live in PA but rent in FL each winter; I'm in Sarasota, now through March, but don't have a radiation oncologist yet - my next step.

JNF - I had just discovered the term SBRT when your reply came in, which included SBRT/CyberKnife. My first web search gave the history of SBRT and stated short term results were good but longer term statistics are needed. That was written in 2010 so better statistics should be available now; I'll continue searching.

RCS - My NJ urologist recommended surgery over radiation because he is doing many surgeries to repair damage from radiation 10-15 years later. (I consider him a great doctor; he would not discuss treatment until I read Dr. Walsh's book Surviving Prostate Cancer.) The Johns Hopkins surgeon recommended radiation because the side effects come later, preserving my quality of life near-term. He did not rule out surgery although Dr. Walsh, his mentor, apparently would not operate after age 70.

Many thanks to all!
Posted 1/14/2016 9:44 AM (GMT -5)
Hello Rob and welcome. I edited your original post just to give it a subject.

I agree with the others who have suggested that you consider Active Surveillance. You can generally take Dr. Epstein's (JHU) biopsy report to the bank so you are low risk. If you have access to Hopkins you might want to consult with Dr. Ballentine Carter who runs their AS program. He is one of the world leaders in this protocol.

If you are dead set on treatment then I recommend you consider SBRT, HDR Brachy and LDR Brachy as options. Yes, you prostate size is a big large for LDR Brachy but a course of hormones can shrink the prostate so that LDR is doable. Since you are in Sarasota right now, I think you would be smart to consult with Dr. Dattoli there who is highly experienced and highly successful.

Frankly with a G6 at your age I would avoid surgery - but that's just me.

Good luck and keep us up to date.

Jim
Posted 1/14/2016 9:49 AM (GMT -5)
Welcome aboard Rob. And sorry you're here. My treatment was at Hopkins.

Question all---Re: Rob's T2b staging (or any accurate 'T2' staging below T2c, really), how is it currently determined that the 'tumor involves more than one-half of one lobe but not both lobes' --- without some type of imaging being done? Is it just the amount of positive cores found near the same location? I can see how a T2c can be staged simply by positive samples being found in both lobes, but suppose the needles just missed the tumor on the other side? Makes me think of what guys went through before so-called 'modern technology!'

Clinical Staging:

T2 Tumor confined within prostate

T2a Tumor involves one-half
of one lobe or less

T2b Tumor involves more than one-half
of one lobe but not both lobes

T2c Tumor involves both lobe
Posted 1/14/2016 11:11 AM (GMT -5)
Welcome Rob, but sorry you have to be here. At the risk of sounding like everyone here is singing from the same hymnal, I'd also give a tip of my hat to AS.

If you do seek treatment, I would talk to an RO for more specific info on choices. HDR brachy and SBRT would be good choices, particularly if LDR brachy (seeds) is off the table.

Good luck to you and let us know how we can help!
Posted 1/14/2016 2:28 PM (GMT -5)
Another option which is rarely mentioned is proton beam therapy. Like they say, it's the only cancer treatment with a fan club.
Posted 1/14/2016 3:49 PM (GMT -5)
Robb- there certainly are much longer term followup studies on SBRT. You can read about the longest one at the link below. (This is one year short of the longest followup for IMRT, and that was on a much smaller sample size.)

Nine-year outcomes after treatment with SBRT

Are you in Sarasota now? If so, I can recommend Debra Freeman in Tampa for SBRT. She was one of the early pioneers - doing it since 2003.

With your large prostate, seeds is not an option unless you shrink it first with hormone therapy. Only you can decide if it's worth doing. I think it's kind of drastic when there are other alternatives available. You have a world expert in seeds nearby: John Sylvester in Bradenton.

I agree that surgery can be problematic in older men. You also have to consider whatever other comorbidities you may now have. If you decide to pursue surgery, Vipal Patel in Orlando is one of the top surgeons.

I see what your hesitation is for active surveillance. I had the same hesitation even though my cancer volume was less than yours. (I decided to have SBRT). Active surveillance entails having an intention for future treatment if the cancer progresses. A related idea is called Watchful Waiting - that means you do nothing until symptoms appear or are imminent. At that point, you'd start only lifelong hormone therapy without radical treatment. That might get you through the rest of your natural days. On the other hand, you'd have to decide if you want to live with those effects of hormone therapy on your quality of life.

I don't know an HDR brachy monotherapy doctor in Florida - I wish I did. It's a great therapy.

IMRT and protons have no proven advantages, are expensive, and drawn out procedures - I don't recommend them.
Posted 1/14/2016 4:11 PM (GMT -5)
I think if I were you I would choose AS for as long as possible. Since surgery is pretty much off the table, at any time you decided to pursue further treatment, all of the same options you have now would still be available, and your long-term survival would likely not change.

As others have said, you may well live out your natural days and never need treatment for PCa.

Just my .02 but I will generally chime in to advocate for AS when it seems appropriate.
Posted 1/14/2016 5:22 PM (GMT -5)
Hi Rob, Welcome to HW and sorry you have to be here. At your age, I think it sucks to get this diagnosis since any treatment has its side effects and exacerbates any other issues you may have. I would throw my hand up to tell you that AS is the way to go if you can stay away from any treatments and the side effects. I am on hormone therapy (prior to HDR and IMRT) and it is not a great ride. However not everyone is cut out to say "I have cancer and I am just waiting and seeing what happens". Most people want to do something since we are programmed to treat our problems. You have some quick education to do to make yourself your own expert so you can make a decision that you can live with. There are some great comments/guidance on here. Good luck on your decisions and keep us up to date. Take care.
Posted 1/14/2016 6:35 PM (GMT -5)

CaliJR said...

CaliJr's stats from his sig
Age 51. PSA 9/14: 3.8 & 4.1: 10/14: PSA 3.9 - PSA Free 13%
Random 6 Core Biopsy 10/14: Neg
PSA 3/17: 6.1 - PSA Free 5% : Random 18 Core Biopsy 4/15: Neg
PSA 9/15: 6.7 - PSA Free 5% : 3T MRI : Neg
CDU Targeted Biopsy by Dr Bahn 9/15: G 8(4+4) T2a

Rob, one thing you have to take into consideration, and I hope I am not repeating this ad nauseum, is that PCa really just is not as definitive as many other things although we are looking for definitive answers. It's just not that way.

CaliJr had 2 negative biopsy's, and a negative 3T MRI but continued pursuing to a color doppler ultrasound which he had to pay for out of pocket (don't know about the biopsy part) and which is only available in CA, FL, and NYC. Unfortunately, or fortunately (depending how you look at it) he then discovered a G8 which clearly required agressive treatment.

But, if he had not been proactive about his care how much damage might have happened prior to proper diagnosis?

OTOH, We had a poster here a while back whose father was a G6 and had his prostate removed surgically and she said that her fathers post surgical pathology was negative for prostate cancer and they found no G6 in his removed prostate when they sliced it up in the lab.

We all want answers, expect and have a right to answers. Unfortunately, if you get answers with PCa, they usually come with doubt.

Take your time, read a lot of the forum, threads, different posters,etc. This is one of the best places to learn. When you figure out how little you know, and how little there is to know with certainty - then you're starting to get it figured out.
Posted 1/14/2016 7:28 PM (GMT -5)
Hey Rob...Welcome to the club. Sorry you had to join.

I don't have alot to add to what's already been said. I can see AS for you but could also understand if you opted to for treatment.

With that said, if a 73 year old member of my family signed on to having a prostatectomy, I'd be more concerned for them due to their treatment more than their cancer.

Even when nothing goes wrong, it's not like taking out your gallbladder.

I'm 57. It's body blow. Make no mistake.
Posted 1/14/2016 7:31 PM (GMT -5)
Island Time,
Congrats on the confirming low PSA last week!
Jim
Posted 1/14/2016 7:38 PM (GMT -5)

JimBear said...
Island Time,
Congrats on the confirming low PSA last week!
Jim

LOL Thanks man. Feels good.
Posted 1/14/2016 11:00 PM (GMT -5)
Rob
you have the best Prostate cancer facility for radiation in Sarasota at Dattoli Cancer Center. You should definitely call them for a consult!
Bob
Posted 1/15/2016 8:53 AM (GMT -5)
Rob, sorry to see you here.

Am defiantly not the expert here. The above posters keep me straight on the available treatments and the research behind the studies.

That said, it must be a little concerning with two different Pathology readings. Its my understanding, that a G7 with your core values is boarder line for some type of aggressive treatment (your age taken into consideration for sure). On the other hand, a G6 condition and a PSA <10 is a AS option for sure. If you are like me, you need more valid data to break one way or the other. Have you thought about testing the 90% core cancer tissue for Cancer DNA makeup (Aggressive vs Non-aggressive)? Basically, the real biological cancer in the prostate.

Here's the links to Oncoptye DX test:
http://prostate-cancer.oncotypedx.com/en-US/Professional/GPSResults.aspx
http://prostate-cancer.oncotypedx.com/en-US/Patient/TheOncotypeDXTest/UnderstandingYourGPS.aspx

Just a thought . . . . Good luck in your decision . . . .
_________________________________________________________________________________
OCTOBER 2015
Age: 59
PSA: 3.0 elevated to 3.5 in (6) months
3T-MRI: (1) lesion identified
Fusion Biopsy Results: Lesion cores benign, additional (12) cores = (1) positive, cancer <5%
Pathology Summary: Grade 1 (GS6:3+3), 2nd pathology verification
Clinical Stage: T1c

Genetic DNA Profile: Above average risk for Aggressive PC (deCode Genetics)
Existing Cancer DNA Profile: DNA risk unknown (Oncotype DX test cannot be performed, <1mm)
High Grade Biological Score: 27% aggressive risk (Mi-Prostate Score)
Other Health Conditions: Diabetes Type II (DX 2000), on meds & insulin

PC Treatment: "Active Surveillance"
Risk: Undetected Cancer Progression
Risk Likelihood: LOW

My Story: https://www.healingwell.com/community/default.aspx?f=35&m=3528051

Post Edited (NewDay) : 1/18/2016 6:08:13 AM (GMT-7)

Posted 1/15/2016 10:33 AM (GMT -5)

NewDay said...
...
Here's the links to Oncoptye DX test:
http://prostate-cancer.oncotypedx.com/en-US/Professional/GPSResults.aspx
http://prostate-cancer.oncotypedx.com/en-US/Patient/TheOncotypeDXTest/UnderstandingYourGPS.aspx

Just a thought . . . . Good luck in your decision . . . . _


Looks like a really good thought to me. I notice they now say medicare will cover if specific criteria are met. This test is relatively new, and IIRC, was not covered by medicare and was quite expensive when I first saw it.

If you qualify for medicare coverage, I see no reason not to give it a shot. I'm thinking that like just about all the other tests the accuracy is somewhere in the 85% to 90% range or thereabouts. Still, the more evidence you gather the better picture you start to get.
Posted 1/15/2016 1:02 PM (GMT -5)
If you want Prolaris or Oncotype, definitely get pre-authorization first. They are very expensive (around $4000) and Medicare might cover it in some areas but not in others - I think they will only cover it if given as part of a clinical trial or registry, but I may be wrong. Insurance determinations are mysterious. Usually those kinds of tests don't provide data useful for decision-making because most men fall in the middle of the bell-shaped probability curve.
✚ New Topic ✚ Reply
12