Recently diagnosed with bad numbers-looking for feedback

Finally got a biopsy after alarming test numbers. Here are the results:

PSA 37.2(has been as high as 44 and low as 27 over the past 6 months)
PCA3 31
PAP 2.4

Biopsy results:
4 of 8 cores positive
left base lateral GG 4+3=7
left mid-medial GG 4+4=8
left mid GG 3+4=7 discontinuous involvement
left seminal vesicle 4+4=8 discontinuous involvement
Stage T3B

I also had the MiPS Prostate Score Test with a prostate cancer risk score of 83% and a high grade prostate cancer risk score of 72%.

I just completed an F-18 PET bone scan(no results yet) and am scheduled for a clinical trial C11 Acetate PET scan next week.

As you can see, numbers do not look good. I am scheduled to go to California to visit Dr. Scholz Prostate Oncology Specialists after the PET scan results are in for a course of treatment consultation.

I am looking for feedback on my numbers as well as any advise on how to proceed. Thanks for your help.

Your numbers are indeed not optimal to say the least but by far not the worst ever posted on this board.

For example Todd Seals had a PSA of 3200 and is now undetectable.

See the thread Redwing started that is now up to 8 pages of posts dedicated to Gleason 9's and you will see there are many

www.healingwell.com/community/default.aspx?f=35&m=2863652

Your plan appears to be excellent.

The only suggestion I have beyond what you are already doing is to befriend my mentor Tall Allen who lives in the Marina del Rey CA area.

Try to meet him in person while you are there.

He is the de facto layman knowledge expert on this board (there are others but none better, plus he partakes in several other advanced boards).

His help has been a true blessing and I am sure he would do the same for you. He went so far as to accompany me to my radiation oncologist meeting at UCLA with Dr Chris King.

This was not an isolated case. Tall Allen also met with Sonny when he was in LA, again with a very unusual case different than mine relatively high PSA but no observable bone mets or lymph node involvement at the time after numerous scans by national Institute of Health.

Good luck and keep us posted.

LupronJim

Thanks to all for the replies.

LupronJim, can you tell me how to reach Tall Allen? I will be in Marina Del Rey on Sunday July 20 for my Monday apt at Dr. Scholzs' office.

Also, I will be relocating to the Cleveland area at the beginning of August and plan to start whatever course of treatment is recommended in that neck of the woods. I understand The Cleveland Clinic is first-rate. Any one have experience with them?

Quick word of welcome from another T3b Scholtz and Lam patient. It looks like you're on the right path...The specialists will outline a plan of action.
Keep us informed . IS you C11 scan in Phoenix? Mine was in Kansas. Its closer to Illinois, but next one will be with Almeida in AZ.
Jim and Marie

Welcome from another G9er. All I can say is hit your G9 hard and you'll be fine.
Bob

Welcome. I had outpatient treatment at Cleveland Clinic. (had some complications). They wanted my records and biopsy slides when I went there for 2nd opinion, before I was treated.
I think the doctors there are on salary. They have 30 urologists there. It is easy to get an appointment there.
University Hospitals in Cleveland has fewer urologists, but may be as good especially for oncology or radiation.
Good luck.

Though a lot of Gleason 9's have wished you well, it appears you may be a Gleason 8, which is a slightly better prognosis.

I received your email and sure Tall Allen will respond when he sees it.

LupronJim

I'll answer the easy question and let the smarter guys here weigh in on SBRT versus IMRT, but neither "automatically" includes brachytherapy. That is an different treatment that is often used in conjunction with hormone therapy and external radiation in high risk cases (like mine and also like yours). I had the high dose version of version (HDR brachy) in conjunction with HT and IMRT, but there's no one size fits all for all patients. Dr Scholz will be very helpful in terms of how these treatments can potentially work together.

It sounds like you're on the right track for your research and I'm sure you'll get more info on SBRT versus IMRT shortly.

Most important, congrats on the negative scans!

Michael

Post Edited (Michael_T) : 7/17/2014 9:55:17 AM (GMT-6)

Todd, I keep looking for a "Like" button for your posts!

dse9999,
From another T3B, welcome to the club that nobody wants to join! We're all supportive here.
Your initial diagnosis sounds very similar to mine 33 months ago, and my PSA was 52. To give you hope, I've been undetectable for the last 14 months (still on Lupron), so it can be done. You've done the right tests so far, and your planned consultation with schulz is a great start. All the best in your treatment planning!
Bob

dse9999 said...
Finally got a biopsy after alarming test numbers. Here are the results:

......................................................
left seminal vesicle 4+4=8 discontinuous involvement
Stage T3B

....................................
As you can see, numbers do not look good. I am scheduled to go to California to visit Dr. Scholz Prostate Oncology Specialists after the PET scan results are in for a course of treatment consultation.

I am looking for feedback on my numbers as well as any advise on how to proceed. Thanks for your help.

Hi Des,
Welcome to the club none of us wanted to join! You have already had good comments and info from others with numbers = to or > than yours. I am a G9(you are 8 I believe) only about 5 months post RP with no other treatment quite yet, holding at < .01 so far. Sounds like you are on a good treatment path/plan as you check out your options.

EDIT: oh, I forgot the main reason I posted: You know you have SV involvement from your biopsy results? I did not realize the Bxs included SV? I am also SV+, but I did not know this until my post-op path results.

Hello:

   I am not experienced enough in the technical language of this disease to give you any kind of an intelligent answer or comment, BUT - my practical experience may be of some help to you - or possibly encouragement!

   You will be seeing, at least, one of the best in this field for treatment considerations. So, you may find some help in reviewing the treatments of others.

   My initial consultation and brachytherapy was with:

Dr. Brian Moran - of the Chicago Prostate Cancer Center - in 2004.

   My metastatic PC treatments have been thru:

Dr. Bruce Bank - of Northwest Oncology & Hematology - in 2012/13/14.

   A recent consultation and review for a clinical trial with:

Dr. Walter Stadler - of the University of Chicago Med Center - in 2014.

   Numerous areas of urological care with:

Dr. Elias Michaels - of the Northwest Urologists - in 2011/12/13/14.

   The history abbreviated is below in my signature.

   My recent PSA (last 4-1/2 months) has gone from:

A low of 15.4 while on Jevtana (8-infusions total) to:

A high of 89.3 just before starting my current chemo - 5-days ago.

Note:

   I did decide against the phase I & II clinical trial of OST167 - at the University of Chicago for a number of reasons. I did move ahead though into the metaxantrone infusions beginning on July 16, 2014 at my Oncologists office - after passing an echo-cardiogram 5-days prior.

   I hope this information is of some value to you ... at least as an example of durability possible thru 5-different chemos and 2-HT varieties.

Best wishes ........ peace and wellness

Rob & Gizmo

  

dse9999 said...
Latest update:

R18 and C11 scans both negative but did confirm SV involvement. I met with Dr. Christopher King, RO at UCLA as well as Dr. Turner at Dr. Schols office. Both ruled out surgery and brachy due to the high risk numbers and likelihood of spreading(even with negative scans).

Both recommended IMRT to prostate and pelvic nodes in conjunction with ADT. I am now on Lupron and Casodex, with a shot of Prolia for bone support and Cialis for blood flow. 2 months of that, then IMRT for approx. 2 months, then another 14 months of ADT.

I am now trying to focus on the best type of IMRT to keep side effects at a minimum(incontinence is primary concern). Getting mixed opinions.

dse9999 said...
Lupron Jim,

Both R18 and C11 PET/CT scans found no mets to lymph nodes, organs, or surrounding tissue(though it did confirm seminal vesicle involvement. Dr. Almeida, who is heading the C11 clinical trial here in Phoenix, said most likely course of treatment is radiation with a short term(1 month or 3 month single treatment?) hormone therapy to quiet down the prostate prior to the radiation. Tall Allen has referred me to a Dr. King at UCLA to look at the shorter term SBRT treatments(which can evidently be done at the Cleveland Clinic where I will be getting the treatments).

What are your thoughts on the SBRT vs IMRT? Also, do both automatically also involve brachy?

Thank s for the feedback.

Dave

Dave - I emailed you the full 11 pages of text that Dr King provided to me, Here's the overview ofLong-Term Outcomes From a Prospective Trial of Stereotactic Body Radiotherapy for Low-Risk Prostate Cancer

www.sciencedirect.com/science/article/pii/S0360301610036771

Admittedly we are locally advanced PCa and not low risk PCa per se but something to extrapolate off of.

We both have benefited from sage advice of Tall Allen, Dr. Fabio Almeida and Dr. Chris King (I also saw Dr. Brian Moran in Chicago who Rob references and Dr. Mack Roach at UCSF) and face similar decisions:

1. Low dose brachy therapy

2. higher dose HDR with a "boost"

3. highest dose SBRT

Thanks to the Tall Allen of another board poster name Ardeee a layman PCa advocate from UCSF I have this descriptor of #2

"you would receive 5 weeks of IMRT for the pelvic girdle - approximately 20-25 sessions depending on the doc and the plan. This is followed by the boost that can be in several forms:

1. IMRT - in which case about 20 more sessions focused at the prostate bed

2. SBRT/ Cyberknife - approx 2-6 sessions on the prostate bed depending on the doc

3. High dose brachytherapy (HDR or temporary brachy) - insertion of radioactive rods once or twice over a 24 hour period. Recent research suggests that once may be enough.

4. Low dose brachy (LDR, seeds, or permanent brachy) - seeds inserted into & around the prostate.

Since you appear to have a lot of bulk in the tumor, you may be a better candidate for HDR or SBRT rather than seeds. You need to explore this with whomever you select.

Mack's team can perform the IMRT + all four options at UCSF; if you select SBRT or HDR, either Gotthelf or Hsu would likely be your rad onc. You are likely facing a minimum of 18 months LHRH."

----------------------------

BTW, Dr Chris King teams with Dr. Jeffrey Demanes also of UCLA on the treatments listed above.

My decision will be based on logistics. While I prefer the speed of 2 weeks SBRT M-W-F week one and Mon-Wed week two and I am done, we have no close relatives in LA area. I do have a daughter 20 minutes from Dr Brian Moran and a son an hour away from UCSF Dr Mack Roach.

My spouse prefers local treatments in Florida albeit 7 weeks elapsed time.

My west coast tour primarily to spoil grand kids but seeing a lot of PCa experts while there, that started May 30 is coming to an end and I go back to University of Florida & Shands July 31 for a consult with my medical onco ( I am part of UF & Shands Metastatic Disease program even though I have since been proven to have no mets first by Dr Almeida and then confirmed by UCSF imaging team).

Shands is one hour North or where I live and we also have a very good RO 5 minutes from home who is affiliated with Robert Boissoneault Oncology Institute.

While Side effects such as Incontinence that you cite and ED are an issue, logistics is our main driver.

LupronJim