|The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=35&m=3671510|
|Posted By : tennis23 - 7/22/2016 7:36 PM|
I was scheduled for a Hip surgery this year, but my doctor did a PSA test for some reason as you have to have a physical 30 days of the surgery. My PSA was a 5, then I went to a urologist and had a free psa test which came back a psa of 4.7 and Free PSA of 8.6%. Then went to one more and had a psa of 8 and decided to get a MRI of my prostate. It came back with a PRA2 score which meant nothing worth biopsying. So, my new Urologist at Virgina Mason, Dr. John Corman said you need a Biopsy TRUS. I got it last week and it came back 2 days ago, I have 3 of the 12 at a Gleason 9 on the right side of my prostate. I am in shock after already suffered an aorticdissection and open heart surgery at the age of 40. Now at 53, I have a new challenge that chances are I would have never found out about had I not needed my hip replacement. So, I am scheduled this Tuesday for the CT/Pet Scan/Bone scan, three different tests and hopefully its only within my prostate and most likely would have the RP to remove it. Virginia Mason Urologists Dr. Corman is the director of the prostate cancer center there. I really like him. I am scared something fierce and I am a Christian and not supposed to be afraid. I basically told my co workers today that I have PC and it was very tough. I am trying to stay positive and the reason I created AorticDissection.com was to encourage other AD survivors to have hope. I have over 500 stories from all over the world. Now, I need help and sites like this seem to be the place to go. I also am a member of the Inspire site as well. So, my mind is telling me, "Brian, you have "x" number of days/years to live, and that's about it. So, deal with it. My other brain is saying, Miracles DO happen and for me I had one already making it through the AD and open heart surgery. I am just trying to figure out and hope that a Gleason 9 is not a death sentence and reading all over the websites, I can drive myself crazy going down negative rabbit holes. Seattle is a pretty good place for cancer care and just hope GOD will give me a cure from this. Is it possible that if the cancer has gone outside my prostate that there are cures out there still? I just want to pursue every possible avenue for a cure. Thanks! brian
|Posted By : Newton451 - 7/22/2016 7:49 PM|
|Hi Brian and welcome brother! Sorry you had to join up. Relatively low PSA kinda says your G9 although high risk may not be at all advanced. Hope of hopes that it's localized and highly treatable. |
You should get your slides re-read by the famous duo. I'm sure many will advise that.
Don't worry. Tons of success stories here should lift you up.
Age at DX 53
PSA 11/14=8, 11/15=11.5
DRE Nodule LHS LWR
22 Jan 2015, Biopsy 3 of 10 positive
3+3, 4+3, 4+4
Scans...NEG for METs
Triple Play Chosen (HT/HDRBT/EBRT)
Lupron Depot/Casodex 4 months base plan - Started 31st March
03/31/16 PSA=10.40, T=9.0
05/19/16 PSA=.64, T=<.6
HDRBRT 21/06/2016-16 Cath, 15Gy
EBRT started 05/07/2016-Tot 46 Gy, 14 Down...9 to go
NTAF MY FRIENDS...EEEE
|Posted By : Cyclone-ISU - 7/22/2016 8:07 PM|
Welcome to a corner of the world --- filled with compassion, care, and comraderie !
Based on your age that you shared, we are in the same age range --- so, I just wanted to reach out to you with a message of support.
You're facing a diagnosis and it's emotionally tough at first, as you know --- so much to think about --- a whirlwind of emotions --- fears, worries, anxieties --- restless, sleepless nights --- we've all been there and we're here to lend some support RIGHT NOW.
We've got a BAND OF BROTHERS here --- dedicated to reaching out to others --- and we also provide a listening ear, some advice if needed, some solace ... and along the way, we also share our treatment experiences ... all in the interest of helping other readers.
This forum is composed of members from all over the United States ... every "corner of the country" ... and we've got loyal members here from Canada, Mexico, South America, Europe, Africa, and Asia, as well ... it's a tremendous resource.
We've got members checking in here, 'round the clock, 365 days a year --- weekends and holidays, too ! It's a tremendous network of support that you've discovered here ... and the outpouring of support can be incredible, just when a fellow needs it the most !
You are invited to look back through past posts, located in the archived pages from the bottom of your screen ... this forum has been going for YEARS ... if you have a specific topic you are interested in, simply type a key phrase into the search box located at the top of your screen.
With that being said --- over time, the "whirlwind effect" will slow down for you --- you'll learn more about your diagnosis --- you will begin to form a bond with your doctors --- and a treatment PLAN will emerge --- after you are finished up with all the testing in front of you --- so, keep breathing --- stay with us --- we're all in this TOGETHER with you. Comraderie to be found --- RIGHT HERE !
With that being said --- there's no substitute for keeping up with your usual activities and hobbies and social events --- I'm a firm believer in staying in close touch with your family, friends, and faith, in whatever form that takes for you. Over time, you will form a TEAM OF SUPPORT in your life --- neighbors, work colleagues, community members, old classmates, church friends, relatives ... they will all RALLY AROUND YOU and support you in incredible ways.
I'm a school teacher, diagnosed in my 40s, with an advanced case --- I have tremendous doctors and have pursued treatments since diagnosis and have had very meaningful success --- I have continued my teaching career, without any interruption --- stayed active with my family and friends --- continued with all my hobbies and interests --- exercise --- volunteer work --- all of it. There are hundreds of success stories here, as you will see over time ... and I wanted to share a message of HOPE with you today ! We all need that --- HOPE !
I give thanks every day for my blessings and continue to face forward, as my treatments have continued over time. I also have a lot of gratitude for the support I have experienced from my family and friends --- my teaching colleagues --- church members and community members --- and my school students, as well.
I just wanted to reach out to you, and to let you know we're here for you. Continue to post ... continue to keep us informed ... let us know how you are faring as your tests continue and treatment plan begins to emerge ---and meanwhile, we'll keep the front porch light on for you in the days ahead ! Visit often !
Sent with my best, from across the miles,
"Cyclone Fan" - from Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy Treatments (TAXOTERE) & now ZYTIGA
Additional Medical Consultant - Dr. Eugene KWON - Mayo Clinic
PSA Level: Currently < 0.10, With Treatments Ongoing
|Posted By : Manfred - 7/22/2016 8:32 PM|
|Brian. Tough break on the diagnosis. I believe that you are going to do well in treatment. Definitely Have your slides reread. |
Keep the faith. Lots of good advice and information on this site.
67 yrs - DX (age 66) Jan 4 2016 20 cores, 9 positive, GL 8
Bone and CT scans on 1-12-2016 - neg
PSA 10-15 2.22; 02-16 0.62; 04-16 0.17
Treatment Lupron 1-12-16
IMRT- 25 doses completed 3-30-2016
LD Brach Seeds on 5-10-16; 6 month Lupron Shot 5-13-16
|Posted By : Larry E - 7/22/2016 9:02 PM|
|This is the best place to be; there are many here with PC experience in all sorts of treatments and all sorts of diagnosis. I'm sure you are still in shock but read as much as you can on here. And you can ask any specific question and will get many good honest answers. Larry|
Dx 62yrs on April 2015 Tulsa
Advanced Prostate Cancer, Metastases in bones
Gleeson = 9 with 80%
lesions on my spine T12-T11, left ischium ramus, left pubic ramus, and eighth rib bone.
5/27/15 Fermagon was initial ADT /240mg
7/15/15 Taxotere / 6 cycles - Warren Clinic Oncology
Denosumab, Lupron, Citracal 1200
6/16 PSA .3
|Posted By : InTheShop - 7/22/2016 11:06 PM|
|Welcome to HW.|
First, dial back the worry and fear a bit. Yes, it's not good news, but it's very treatable. We have G9s here that have gone years and years without dying. If the PC still confined to the prostate bed, it might even be curable.
I get that you're shocked, we all were after we got that report. Take time to sort out your emotions. The best way to combat the fear is to learn about this PC thing. You've done it with a different issue, so get started on this one.
Checkout the sticky thread at the top of the forum for lots of good info.
Now start doing your research, second opinions and plotting out a plan.
There are so many stories here of guys who've beaten this thing or have kept it at bay for many, many years. Look for the hope, there is some there.
and a couple of extra prayers wouldn't hurt.
I'll be in the shop.
Age 56, 52 at DX
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post
|Posted By : Artist Mark - 7/22/2016 11:46 PM|
|Brian. Welcome and sorry that you have to be here. I was diagnosed the first part of June. Gleason 9. See my signature below. I live in Walla Walla but immediately scheduled an appointment at Virginia Mason and am seeing Dr Corman. In fact I'll be over there Thursday to get markers inserted by Dr. Corman for external radiation that will be done here in Walla Walla. After my 6 week radiation schedule I will be returning t V.M. and Dr. Corman and Dr. Badiozamani to have Brachytherapy. I'm currently on Zolodex a tetestarone blocking therapy to slow the cancer down ad to shrink the prostrate. This is what they call the "triple play". I trust Dr. Corman and Dr. B. They suggested this treatment because my case in their opinions was better than RP. Every case is different|
. My point is , I trust the team at V.M. They took care of me 8 years ago when I had a ( large ) small intestine tumor and had a 10 day stay there. Just getting the news we've received is very scary but there is hope. I have been doing research for a month and been asking for advice from the guys on this forum. It's great that I've found someone with the same Dr and a similar dx. You can email me any time. Good luck and God bless you as you begin this journey none of us want to be on. Mark
Also, I will be praying for you!
Dx 6/3/2016 PSA 3.42 %fPSA 7.6
Bx 6/1/2016 Gleason 9 ... 8 of 12 cores positive (70% - 60% - 30% - 30% )
4+5 =G9 (4 cores) PNI.. present
5+4 =G9 (2 cores)
3+4 =G7( (2 cores) PNI.. present
4/2016 ct scan...neg
6/13/2016 Bone scan..neg
6/17/2016 Tx starts ... LHRH Zoladex shot
My story: www.healingwell.com/community/default.aspx?f=35&m=36
Post Edited (Artist Mark) : 7/23/2016 12:01:32 AM (GMT-6)
|Posted By : Tall Allen - 7/22/2016 11:53 PM|
Providence is on your side that you caught it early enough to hopefully be curable. The "famous duo" that Newton is talking about is Epstein's lab at Johns Hopkins or Bostwick Labs. They specialize in prostate cancer pathology so you want one of them to confirm the Gleason score.
Assuming it is confirmed as a GS 9, and assuming the other imaging scans you went for show no evidence of cancer outside of the prostate, you have some very good prospects (80-90%) of beating this with a combination of hormone therapy, external beam radiation, and a brachytherapy boost. Fortunately, Seattle is well Known for its brachytherapy, especially at UW Seattle, so you have many excellent experts to draw from.
Your first inclination, and it is almost everybody's first inclination, to "just cut it out" can be problematic with a GS9. GS9s are very invasive and surgery can only get rid of cancer contained within the prostate capsule. Salvage radiation after surgery carries a lot of side effects that may be avoidable if you do the radiation first (there are other kinds of salvage if radiation fails).
This is all bewildering, I know. The first step (after the scans and the second opinion on the biopsy slides) is to start making appointments with radiation oncologists that specialize in these therapies. You may decide to have surgery in the end, but at least you will have the info necessary to make the decision. They will probably want you to start with at least some hormone therapy, which will stop any cancer progression.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 9 yr onc. results
•SBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA
•PSA now: 0.2
No lasting urinary, rectal or sexual side effects
|Posted By : Bobby Mac - 7/23/2016 6:07 AM|
I agree get a second look at the slides.
Get second and possibly third opinions about treatment options, from Urologists,
RO's, and Prostate Surgeons.
Read books and learn all you can about prostate cancer.
Remember, no one treatment fits all patients.
There are members on this board who consistently advocate for radiation and others for surgery.
The outcomes of each are approximately the same.
Run some monograms:
Best wishes to you!
Age: 69, 69 at PC dx, PSA 6.7 Avodart (15.5)
Biopsy: 2/16 13 of 14 Positive, 2-99%, GL 8, 2nd look GL 7 (4+3)
Post OP Pathology:
Non-Focal EPE, 2 positive margins, Gleason 4+3=7, involving 50% of gland, prostate weight 31.5 g, Stage pT3a N1 Lymph node involvement: 2/10, right side positive, Diameter of largest N Metastisis 2 mm
uPSA 6/1/16, 2.41, PSA 6/16/2016, 2.6, 7/12/16, 2.2
|Posted By : Pratoman - 7/23/2016 6:33 AM|
|Brian welcome to the club that we'd all rather not join. You've come to a good place. And you've gotten great advice above so not much to add from me. |
I know this will sound strange, but consider yourself lucky. As you said had you not needed hip replacement, you might not have found it. And when you did it would be advanced beyond cure. Right now you probably have a good shot at cure. Doubtful that the scans will show anything with a PSA OF 8
Good luck and hang tough, you'll be ok.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by Dr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, 4/15 <.02 7/15 <.02, 10/15 0.00 (new lab) , 1/16, 0.00
My Story: tinyurl.com/oo9x4aq
|Posted By : Octorobo - 7/23/2016 6:34 AM|
|Good Morning Bryan|
Sorry to read of your circumstances. You are in a great place to get information, process and even some hope. Your story conveys you already have seen miracles takes place in your life. This may be another episode where years later you retell the story "this happened back then". Just last night I told friends of my five way heart bypass that I had in 1992 at the age of 41. I talked about having signs of prostate cancer at 55 and not doing anything until I was 57- stupid decision on my part and poor doctor guidance. Had salvage radiation 15 months ago. I am 65 now. My wife and I are talking about how to plan our lives over the next twenty years. I too am a Christian and realize these decisions and circumstances are not solely dependent upon me and what I do. I have trust and hope and try to do wise things everyday. Blessings on you and you go down this path.
Diagnosis in August 2007
PSA 4.1 Gleason 3+4=7
Robotic Surgery - 10/2007
GS 3+4=7, Stage T3a N0 MX, Margins-, EPE +, PIN+, Nodes-
Post- Surgery PSA .005, Jan. 2015 .06
SRT ended 5/15/15. 35 treatments 70 Gy's 8/1/'15 PSA <.006 11/1/2015 <.006
|Posted By : lapilot - 7/23/2016 7:09 AM|
"I am scared something fierce and I am a Christian and not supposed to be afraid." I am not a religious person, but I can tell you that being scared has nothing to do with being a Christian. Bad things do happen outside the realm of religion. I can tell you that knowledge will help to alleviate your fears. And you have come to a good place to talk to fellow survivors of prostate cancer with considerable first hand knowledge. With a diagnosis of GS9, you will have to man up and deal with this disease. There are many potential curative procedures, some are better than others for GS9 members. For GS9 members a more aggressive approach is desired which involves ADT (androgen deprivation therapy) and radiotherapy.
Remember prostate cancer isn't a death sentence, it can be cured or can be a chronic disease that can be lived with for many years.
Age 60, mpMRI 8/18/13 negative
biopsy 9/5/13, PSA 6.2, 13 core of which 6 are postive
left laterial base 10% G6(3+3)
left laterial apex 10% G6(3+3)
right base 15% G7(3+4)
right laterial base 15% G6(3+3)
right laterial mid 60% G6(3+3)
right lateral apex 20% G6(3+3)
path T2c N0 Stage IIB
PSA 0.1 to 11/15 then 0.2
11/15 IGRT 39 sessions 72 grays. ZERO problems.
|Posted By : Michael_T - 7/23/2016 8:27 AM|
|Bryan, greetings from another Gleason 9. I'm so sorry to hear about your diagnosis, it's a kick in the teeth getting the news. But like others said, you do have a good chance of doing quite well--I wouldn't even call it a "miracle" since it happens all the time. Almost four years later I'm doing quite well and many other Gleason 9s here are. I'll bet you a nickel the bone scan is negative given your low PSA (mine was negative).|
I'd agree with two points in the posts above. First, get a second opinion on the biopsy slides from either Bostwick or Epstein. Second, consider radiation as a treatment since it treats a larger area than surgery and can be a better alternative for high-risk guys like us. You need to find as good a radiation oncologist as your urologist to really learn about the best and latest radiation techniques. (FWIW, I had combo therapy: HDR brachy, IMRT and--yuck--hormone therapy. But I'm doing well and have no major SEs to speak of.) Even if you still choose to have surgery, you'll know you checked out all of your options.
I wish you all the best and I do hope we can help you through your journey!
Age 55, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga)
Completed HT (18 months) in April 2014
6/16: T = 162, PSA = 0.20
|Posted By : Nomar Lupron 4 Me - 7/23/2016 1:54 PM|
|Welcome from a fellow G9.|
Here's a link to a bunch of our stories. It is titled part II because the original thread got too long for forum capacity. so you link back to Part I from the first thread you read in part II
and a link to johns Hopkins second opinion biopsy services
One of our most famous success stories started out with a PSA of 3200 and is now <0.01. He happens to live in state of Washington 10 years after being diagnosed with one year to live
Finally form a team with a medical oncologist who specializes in PCa and at least one radiation oncologist and one urologist and keep your cardiologist in the loop since you will likely be on a hormone therapy which can affect your cardio metrics.
Once you have a confirmed biopsy result and the results of the MRI and bone scan, many here can share the remedy they chose and how it worked.
screen name was LupronJim
66 - DX 64 2/13 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)
T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right PNI
oligometastatic at Dx 5 tumors 1 right sacro, 2 on
T4 & T9, none visible on 5-21-14 whole bodyscan
Lupron 3-28-13 to 4-2-15
Zytiga June '14 to May '15
PSA < 0.01, T < 3 on 5/14
DHT < 5
Prostate shrunk from 50.4 to 15.0
Provenge in Sept & SBRT in Oct
Post Edited (Nomar Lupron 4 Me) : 7/23/2016 1:59:12 PM (GMT-6)
|Posted By : PeterDisAbelard. - 7/23/2016 2:33 PM|
|Hello Tennis, |
Welcome to the forum. Glad you found us but sorry you found yourself in a situation where you needed to look. Hope we can help.
I've added your name the list in our Gleason 9 Crew thread. (I see that Nomar already mentioned the thread.) I often encourage newly-diagnosed high risk guys to read through the list. It is reassuringly long and a good percentage of the guys on that list were diagnosed years and years ago and are doing fine. I am on the list. I am four and a half years after diagnosis and I am doing OK.
My only advice (beyond the good advice you have already received here) is that high-risk disease seems to respond well to the word "and". Radiation is good but Radiation and Hormone Therapy is better while Radiation and Hormone Therapy and Brachytherapy is better yet. Talk to lots of doctors before you make any decisions and try to include at least one multi-specialty cancer center -- they are the ones who can do "and" in-house.
63 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional
|Posted By : CaliJR - 7/23/2016 4:58 PM|
|Hi Brian, I can't add much to the advice already given but I wanted to welcome you to HW. Sorry you have to be here. Do you reseach and make the treatment decisions you can live with. Most of fighting this disease is living with the side effects of the treatment plan you choose. All of them suck but that is the journey we are on so take it a day at a time. Remember it is a marathon not a sprint. Good luck and keep us posted. Take care. -JR|
Age 51. PSA 9/22/15=7.1 - PSA Free=5% - 3T MRI=Neg
CDU Targeted Biopsy by Dr Bahn 9/22/15=G 8(4+4) T2a
Dr Epstein, JHU, 2nd Opinion=G9 (4+5) Epstein Grade=5
18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16
Zometa I.V. for bone density preservation 3/8/16
IMRT Started 3/24/16 - 28 Fractions Completed 5/5/2016
Taxotere Started on 7/6/2016
|Posted By : tennis23 - 8/2/2016 8:18 PM|
|Wow............ this is great... I appreciate everyone's responses. What a relief. I have been going down a few rabbit holes. I started to read all these stories about Incontinence and sexual dysfunction that I am second guessing my strategy about the removal of the prostate. I am STILL GOING FORWARD with VM and Dr. John Corman. I feel that he's done enough and will do his very best with the guidance of GOD! It's GOD's plan for me and I am just going to have the FAITH that it will get done successfully. I have noticed that my sex drive is non existent and that I feel like I need a construction crane, 1000 naked women and 200 massages and I might get excited........... In all seriousness, I almost feel that I am nudered! But, Lexapro 20mgs can do it to you as well. Dr. Corman mentioned that he might have to take my right nerves and possible lymph nodes out as my cancer Gleason 9 then brought to an 8 in 3 of the 12 cores on the right apex. mid. base that had the cancer. My entire left side has nothing and my prostate is normal size. I started my own personal blog at www.briantinsley.com as I did the same thing with www.aorticdissection.com 13 years ago (On 8/22/16) is my 13th year anniversary since my open heart surgery to repair my aorta. Thanks a million for the support and praising Virginia Mason!|
|Posted By : halbert - 8/2/2016 9:20 PM|
|Brian, let me join the chorus that is suggesting to you that you at least talk to a radiation oncologist who specializes in high risk prostate cancer. There is a risk that your G9 has 'left the barn', and that surgery might well not be curative. Which means you'll wind up with hormones and radiation anyway...and having the surgery first makes that riskier.|
VM is certainly a great treatment center, they get high marks. The thing that I got told at my beginning point is this: you've only got one chance to get the first treatment right. If you're satisfied that you've done all you can do to check out the options, then go for it. Just make sure you do all the proper footwork first.
Age at Diagnosis: 56
Biopsy: 3 of 12, G3+3, all on LT side, 20%, 5%, 3%
Clinical Stage T2C
Bone Scan, CT scan negative for spread
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
|Posted By : Tall Allen - 8/2/2016 11:48 PM|
There is a story from Chelm that my people tell. A very righteous man was told by a Heavenly Voice that as a reward for his good deeds, he will win the lottery. Years go by, and he doesn't win, but he has faith that God will honor His commitment. Finally, he dies a poor man. Aggrieved, he demands to know why God didn't fulfill his promise. God shrugs and shakes his head, "You never bought a ticket!"
Faith is great, but I hope you give God a chance by doing all you can do.
(moderators: I apologize if this violates a rule- please delete if it does)