Stage IV first day Questions

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Stage-IV
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/16/2018 5:08 PM (GMT -6)   
Radical Prostatectomy last week. Pathology report today confirmed cancer 13 of 21 lymph nodes, outside prostate, in seminal vesicle's, 30mm's from kissing edge, lymph vascular invasion. We are Gleason 9 now state IV. Doc has highly recommended we wait 30 days for new PSA test before starting any treatments. We are not sure we should be jumping on ADT therapy. He said the PSA could come back at zero and he wants clean/clear information to work with. We are scared to wait. Our only plan this week is to schedule 2nd opinions at the 3 big guns. Smilow, Sloan kitteman and Dana Farber. We live in SE CT and would travel anywhere to save a life. Any help would be greatly appreciated.
Thanks
Lou

RobLee
Veteran Member


Date Joined Apr 2017
Total Posts : 651
   Posted 5/16/2018 5:40 PM (GMT -6)   
Lou, pretty tough break when you're expecting a contained tumor and the surgeon gets in there and finds that it's begun to spread. Zero PSA would be great but probably a bit too hopeful. Can you post your path report.... Numbers of foci and location (base, apex, transition zone). One piece I hear is significant but my surgeon didn't know was is the SVI distal or direct? (did it spread via contact with prostate or thru fluid, as best I can figure).

Good luck with the follow up. A month before starting HT shouldn't be a problem. You need an accurate micro PSA. HT only starves the cancer and sensitized it to radiation. Radiation is what will kill the cancer. Good luck to you, you likely have a long road ahead of you.
2014-15: PSA's 9, 12, 20, 25, Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40% + 2x100% G8(4+4)
8/16: DaVinci RP, PNI, 3 foci EPE, 11 LN-, 53g 25% involved, BL SVI, T3b n0m0
1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 6/17
8/17-10/17: RapidArc IMRT 39 tx (70 Gy)
1/18, 4/18: PSA's 0.00, Dx Radiation Colitis...
Now what!

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8523
   Posted 5/16/2018 5:51 PM (GMT -6)   
Welcome to HW.

You've just had surgery and need time to heal from that. A 30 day wait won't matter and gives the body time to heal, and lets any remaining PSA leave the body. Even agressive PC won't get that much worse in 30 days. In fact, an early PSA test might be misleading. Adding ADT now could confuse the test and wouldn't do surgery recovery much good. You're doctor is giving good advice, listen to it.

Getting follow up consultations is good, but RP is major surgery, rest a bit and heal before rushing into action. In any case most follow up treatments wouldn't for a couple of months anyway.

A PSA in a month or so will give you a better idea if and how much PC escaped surgery. Depending where it is, there might be radiation options. Give yourself a little bit of time to get a clearer picture of where things are.

You're not going to make things better by rushing into treatments.

Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
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, .4 10/16, .4 5/17, .3 10/17 .3 4/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Stage-IV
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/16/2018 5:51 PM (GMT -6)   
Thanks for the follow up. I am waiting for the formal pathology report and will post ASAP. I was wrong with my not to wait 30 days the Doc is recommending 3 months.

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8523
   Posted 5/16/2018 5:58 PM (GMT -6)   
The standard of care is 3 months. A test sooner than that might not yield the info you're looking for. It feels to me like you're not trusting your doctor and are rushing into action with little information.

I get that this is scary and you're worried. That's natural - who wouldn't be? It's an emotional hit and the fear has to be high.

But, you have options, time and need to take it a step at a time.

Do let us know what the report says.
Hang in there,
Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
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, .4 10/16, .4 5/17, .3 10/17 .3 4/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 1106
   Posted 5/16/2018 6:15 PM (GMT -6)   
You are probably going for the trifecta - ADT and ART. I didn't start Lupron until about five months after surgery. Your pathology isn't the best but absolutely no reason to panic.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
12/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

Naples
Regular Member


Date Joined Dec 2016
Total Posts : 66
   Posted 5/16/2018 6:50 PM (GMT -6)   
Lou,

I was diagnosed in June 2016, surgery in late September 2016, urologist was not very optimistic. I found a high quality Medical Oncologist. Started hormone treatments mid October 2016. Started radiation January 2017. 3 months of radiation. I was Gleason 9 with invasion of Lymph Nodes and Semi-Vessels. Just about 2 years in now. I have a lot of hope. Go climb the mountain... Prayers help too. Good Luck
DX 7/2016. 61 years of age. Radical Prostate Surgery 9/28/2016. G9 5+4. 3 nodes positive. T3b, Casodex & Lupron 2 years. Radiation, 39 completed 3/17/2017.
PSA 7/2016 4.5
PSA 10/2016 1.87
PSA 4/2017 0.0
PSA 7/2017 0.0
PSA 10/2017 0.0
PSA 2/2018 0.0
PSA 5/3/2018 0.0

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 5451
   Posted 5/16/2018 7:04 PM (GMT -6)   
Lou, I’m not going ‘to comment on whether you should wait 3 months or spring into action now, others here are more knowledgeable than I am regarding advanced cancer.

What I do know, is you have every reason to believe that while the road may be a bumpy one, it’s a road worth traveling, and one that will likely reward you with many years of a good life, based on all the new treatments that have become available over the last few years, and all that is in the pipeline.

It’s a tough time to be optimistic, I get that, but when things calm down, as you begin to heal, you will see you have every reason to expect that your prostate cancer will be managed, as any chronic disease, and kept under control for a long time.Even if you don’t start for 3 months.
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 tDr 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, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .06.
Decipher test, low risk, .37 score
My story.... http://tinyurl.com/qgyu3xq

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 9968
   Posted 5/16/2018 7:20 PM (GMT -6)   
With cancer in that many pelvic LNs, there is more than what was extracted. The question is, will adjuvant RT still do any good, or is it just a bunch of toxic radiation that won't make any difference?

To help answer that question, I think you should discuss getting the newly approved Axumin scan as soon as it makes sense to get a PSA test - say, 6 weeks from now. (Insurance probably won't approve the Axumin scan without evidence of recurrence - a PSA over 0.2, and they have to wait at least 6 weeks for the residual PSA from the surgery to clear your system, and they have to wait a few months for tissues to heal before adding radiation anyway).

Depending on what the Axumin scan shows, it will suggest two very different approaches - potentially curative, or long-term management of the disease. In the first case, a radiation oncologist will be the key doctor to meet with. In the second case, a medical oncologist will be the key doctor.

(1) If the Axumin scan shows only regional spread (pelvic LNs and prostate bed) and no distant spread, you can start on ADT+ adjuvant RT right away. ADT starts 2 months before the ART. There is some evidence that whole pelvic radiation may still be curative in some cases while the spread is still confined to the pelvic LNs.

/pcnrv.blogspot.com/2017/12/salvage-whole-pelvic-radiation-after.html

The lead author of that study was Karim Touijer at MSK. I recommend you talk to him. MSK has also done some very important work in escalating the radiation dose for salvage radiation, and in widening the treatment field.

(2) If the Axumin scan shows distant spread, you can start on an aggressive hormone therapy regimen of Firmagon + Zytiga + Prednisone. Early use has been found to greatly increase survival. You have your choice of several great medical oncologists in the area. At MSK, Michael Morris is excellent (or Philip Kantoff if he is still taking patients, possibly at Weill Cornell). At Yale, you have Dan Petrylak. At D/F, there's Christopher Sweeney. At Mass General, there's Mathew Smith.William Oh at Mt. Sinai; and Charles Drake at Columbia. You can't go wrong with any of them.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 427
   Posted 5/17/2018 3:32 AM (GMT -6)   
Lou great to see your post, these guys have lots of good info, so keep asking questions. It was good to meet you in person and anytime you want to talk or take a walk holler and I will be there. I think the worst part of this disease is the loneliness it causes. My mind can project some horrible stuff. However, sharing (as you well know) relieves some of the burdens and can bring hope. One day at a time is more than a saying it is a way of life.

We are in this together! Denis
65YO healthy man, PSA 5/17 4.6, MPMRI, 5/17 lesion. 13 core biopsy 3 positive 3+3 and 1 positive in a lesion, All cores less than 30% 8/17 - the second opinion Yale pathology shows a small amount of (3+4) in one core, < 5%, decipher test shows intermediate risks, looking at treatment options. HDR BT completed 2/6/18. 5/3/18 Post HDR BT PSA 1.3
Denis

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4101
   Posted 5/17/2018 6:05 AM (GMT -6)   
Lou, not the greatest news but as many of the guys have stated you do have options for treatment. I know it is a scary time for you but hang in there. Happy to see you have been able to connect with Denis. What a great guy and perfect to lean on when needed.

Do keep us posted will be looking for you Pathology report when posted.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Hardlyrob
Regular Member


Date Joined Sep 2017
Total Posts : 88
   Posted 5/17/2018 8:12 AM (GMT -6)   
Welcome Lou, and I'm sorry you have to be here. Listen to In The Shop and Tall Allen - two of the most informed guys on this forum. You already have some great advice and recommendations.

A PSA test in 30 days is too soon. PSA has a half life in your body, and you won't have cleared it all out in 30 days - giving you a possibly misleading result.

My Uro recommends a first PSA after RP at two months. As he told me "Earlier in my practice I tested PSA at six weeks. My biochemist brain knew that by then the PSA should all be cleared, based on the half life. We ended up doing a lot of followup testing and creating a lot of unnecessary stress in my patients."

Best of luck to you, and keep us posted on what happens.
5/17 PSA 34.2 age 53
6/17 Dx by biopsy - 9 of 14 positive; Gleason 7 (4+3) 5% to 90% cancer
8/24/17 RARP, Dr. Canes - Lahey Burlington
4/8 lymph nodes positive, EPE, +margin 5 MM, SVI
pT3b; pN1; M0
10/24/17 PSA 0.13
12/11/17 18 months of Lupron
1/18 PSA <0.1; T=31; 4/18 PSA <0.1; T=21
SRT 3/14 - 5/7/18 - 39 fractions; 68.4Gy prostate; 44.5Gy to nodes

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5833
   Posted 5/17/2018 8:47 AM (GMT -6)   
Hello Lou,

Welcome to the forum. Sorry you find yourself here but glad you found us. Hope we can help.

We have a thread where we keep a roster of our members who are Gleason 9 and 10. It is maintained by Redwing57. Occasionally I will notice a new member who in the Gleason 9-10 risk category and I will use my astonishing moderator superpowers to add the name to Redwing's list. I often put the name in wrong or in the wrong place and Redwing has to go fix it. He's very patient with me. I went to add your name but he has beaten me to it. You might want to check out the list. It's pretty long and most of the guys listed there are doing OK. Some have been on the list for a long time. It makes for reassuring reading for Gleason 9 guys, myself included. Here's a link:

The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

I know what a shock that Gleason 9 surprise can be on a post-op pathology report. I know exactly what it's like. But the shock fades and you deal with it.

I dunno if you are a math type but if you do the math based on the three day half-life of PSA in the bloodstream you'd think that a month would be enough time to wait for that first post-op PSA check but experience has shown that it's not. The theory I like to explain it is that relatively benign prostate tissue is sometimes left behind after surgery but without the blood supply to maintain it. That tissue will linger for a week or two, gradually dying away, but still producing enough PSA to screw up a PSA test result. I know that doesn't make the wait any easier.

The advice that Tall Allen provided sounds really good to me. You might want to take a print out next time you see your surgeon -- maybe when the catheter comes out.
65 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

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 43
   Posted 5/17/2018 8:59 AM (GMT -6)   
I'm not a guy, so I can't offer any advice on your medical situation. What I can assure you is that you are in the right place for information and support! I know many of these guys personally, including Denis. They are the best and will do whatever they can to help you. Sending prayers, best wishes, good vibes, & positive thoughts.

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2395
   Posted 5/17/2018 8:59 AM (GMT -6)   
Welcome to the least favorite chapter of the club no one wants to join!

That's difficult news, and it's normal to feel scared. It sounds like you're already thinking about next steps, so that's good. This is one place where you can find empathy and support; you don't have to put on a "brave face" here. Many here have gone through a lot, and can offer hope. Staying solution-focused seems to help.

We have a thread that's run for quite some time for the G9/10 Crew, and I've added you to the roster. It's just a gathering place for those facing similar serious situations, as our interests tend to be on the more advanced therapies, options, studies, and so on. You may find it interesting to read through the many posts, as you'll find most are doing well. [Edit: I see Peter beat me to posting the link.]

Stay with us, ask, vent, celebrate, complain, whatever. We're here for you!
55@Dx on 4/16/13. PSA 5.2, G9(5+4), cT3a by MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (3 yrs)

PSA <0.1 : 8/13 - 5/16; steady at 0.7+/- 0.1 since 3/17

My Story

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3689
   Posted 5/17/2018 10:26 AM (GMT -6)   
Stage - 4 I can only add that Gleason 9 and 10 are a different ball game than the G-6 and G-7 guys get to play...Much of what is written on the internet is aimed at the vast majority that fall into the lower, less aggressive grades of prostate cancer..That first PSA test at 6 or 8 weeks will set the stage for how your treatment path will unfold...Treating cancer can be very expensive especially if you are under 65 and not covered by Medicare. Be sure you know the costs of any treatment you authorize to be performed..

Best of luck to you...
Age now 75 . Diagnosed G-9 6/2010. RALP, Radiation failed
Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..Sept '17, PSA now 9.2. ADT including Zytiga has failed. Will investigate treatment options. 11/17 PET/CT clear, but 4 new bone mets..Going to try Xtandi and see how I respond to that..3/2018 PSA now 54, chemo next. 5?10/18, PSA 200, Dosetaxel started..

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 415
   Posted 5/17/2018 10:43 AM (GMT -6)   
Stage- Welcome to the forum.

Your diagnosis is a tough one. However, one thing I've seen since joining this forum is the number of members with good information to share with others. You will get straight answers here.

There are many high risk patients here who are managing their illness well. No reason why you can't be another.

As others have said, let your body heal from the major surgery. Pay attention to what Tall Allen has to say.

Good luck.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02; 10/17 <0.02:4/18 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

Stage-IV
New Member


Date Joined May 2018
Total Posts : 3
   Posted 5/17/2018 4:51 PM (GMT -6)   
Everyone
Thank you for the warm welcome and great advice. I am going to concentrate on healing and building the the network for next steps. I am presently with a Doctor Joseph Wagner from the Hartford Group. He is a urologist oncologist and doesn't work with others until he feels its time for them to step in. His info has been spot on but we are working at making an appointment with MSK for a 2nd set of eyes.
Lou

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3689
   Posted 5/17/2018 5:24 PM (GMT -6)   
Your Dr. Wagner looks like a good one...Getting second opinions before that next PSA test is a waste of time as the other doctors will have little information to work with...Waiting 6 weeks would be better than waiting 4 weeks....There is little to gain by rushing into treatment before you know exactly what you are treating....Take a vacation, do something fun. Turn off the computer...
Age now 75 . Diagnosed G-9 6/2010. RALP, Radiation failed
Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..Sept '17, PSA now 9.2. ADT including Zytiga has failed. Will investigate treatment options. 11/17 PET/CT clear, but 4 new bone mets..Going to try Xtandi and see how I respond to that..3/2018 PSA now 54, chemo next. 5?10/18, PSA 200, Dosetaxel started..

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8523
   Posted 5/17/2018 5:38 PM (GMT -6)   
Lou - sounds like a plan. Get the test scheduled, think about who you want to talk too and look into the scan TA mentioned. Sometimes it takes awhile to get into get the scans and see the doctors you want to see. Patiences and persistance might be needed there.

Do let us know when you get your pathology report. You're going to need that and the six week PSA test before you can start planning the next step.

and do as much walking as you're able (don't over do) - that really helps.

Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
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, .4 10/16, .4 5/17, .3 10/17 .3 4/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Almost a 10
Veteran Member


Date Joined Mar 2014
Total Posts : 920
   Posted 5/18/2018 4:55 PM (GMT -6)   
Hi Lou,
Welcome to the forum but sorry you have to be here. Since it does not seem like you have had any treatment other than surgery, I think waiting 30 days is a smart idea. I say this because if there is cancer left over it will still be producing PSA and then you can decide on a course of action. If there is little to no PSA then it is likely that most of the cancer was removed. You will likely need additional treatment but at this point it is too early to tell what that treatment will be. ADT and/or chemo are a possibility and most of us tolerate it very well. Best to you and please keep us up to date on your progress.
11/13 psa 240
DX 10/2013 PSA 187.5
PSA HIST 07/11,3.31;3/10,1.87,3/06,.87
Biopsy 10/28/13; 11/12 cores positive gs 9 (4+5)
BNSCN 12/09/2013 2 hot spots in spine
ADT 12/17/2013 22mg lupr, 50 mg Cas
BN biopsy 01/09/2013 neg
RALP 2/19/14 NN,LVI,Path T3BNX,MX, pros size 4.2 X 4 X 3 cm, 31 grm.Post Op PSA 3/14 .6, 6/14<.1;9/8,;.6;12/8, 1.2;3/9/15 3.9;6/2/15 23
12/14 CT SCAN; 1/15 BNSC

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 1026
   Posted 5/18/2018 8:44 PM (GMT -6)   

Hello Lou ---

You've found a great resource right here --- members here to encourage you, listen to you, and to support you.

We're all in this, Lou --- TOGETHER ! One for all, and all for one !

What will you find here ? A band of brothers --- a sense of fellowship --- and a strong bond of camaraderie --- 'round the clock --- seven days a week --- and yes, even holidays. Can't ask for more than that, can you ?

When you first get diagnosed and start considering treatments, it's of tremendous comfort to find some others who can walk alongside you, as your treatments get started. That's why all the members are here --- and now, even more importantly --- YOU are here.

I wanted to share a bit of my story, in the hope that it will encourage you, Lou.

I was diagnosed, out of the blue, with advanced prostate cancer, when I was in my 40s --- after a lifetime of perfect health.

I am a teacher, and a brand new school year had just begun --- I didn't have time to even wrap my mind around things, but I knew I needed to get treatments started. At the time of my diagnosis, the prostate cancer had already infiltrated both of my lungs.

I'm now in my fifth year of survivorship, Lou. I guess when I first got diagnosed, I had the thought that most fellows have, but they just don't want to express aloud. I wondered, "Will I even live until Christmas with a diagnosis like this?"

Thankfully, my doctors began talking about TREATMENTS ... and they spoke of how the treatment landscape was evolving, with new medications and treatments that have become F.D.A. approved within the past decade.

My treatment history is shown below my signature. I am thankful that the treatments that I have pursued have helped me a great deal over time.

I have continued teaching full time since the day I was diagnosed I was diagnosed five years ago. There's been five more Christmas seasons to celebrate ... five more Super Bowls to watch ... five more New Year's Day holidays on the calendar ... five more summer seasons ... and yes, five more birthdays, Lou.

I stay active ... I walk each day ... I attend social events ... I volunteer ... I stay active ... and I live life to the fullest extent.

I have formed a strong and trusted bond with my doctors, over time. Treatments can have a powerful impact --- as the members here can attest. I am just one of those members ...

One thing I have learned, Lou --- never underestimate the importance of staying connected with your family, friends, and faith, in whatever form that might take for you.

I have other friends, who stand alongside me, with a shared health diagnosis. We have a saying that I'd like to share with you .... "A cancer diagnosis might be a new chapter in your life's story, but don't EVER let a cancer diagnosis become the TITLE of your BOOK OF LIFE." Words to live by, that might be encouraging to you today ...

Along the way, over the course of time, you will develop even more courage, resilience, determination, and fortitude.

I would like to invite you to read a thread that many members here put together. I think you will find it helpful and inspiring.

Up in the top corner of your screen, you will see a SEARCH BOX. In that search box, type this thread title, as follows: LETTERS TO THE NEWLY DIAGNOSED.

The moment you type in that title, click on the post, and letters will appear ... written by our members here, for those who just received a health diagnosis.

Let us know how you're doing, Lou --- we're here for you, every step of the way. Keep posting --- we'll leave the front porch light on for you!

Handshake, from across the miles,
CYCLONE --- 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, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing

Break60
Veteran Member


Date Joined Jun 2013
Total Posts : 1841
   Posted 5/19/2018 12:03 PM (GMT -6)   
Lou
I was told that it took ten years for my Gleason 9 to manifest itself in the form of doubling PSA in one year which precipitated a biopsy. So you don’t need to rush to make a decision.
Best to you brother!
Bob
DOB January 1944
8/’12 PSA 2.7; 5/’13, PSA 6.6 (actually double due to finasteride)
7/’13 Bx GS 4+5=9, 2 of 6 cores, 10%, 40%; stage Pt1c
9/’13 ORRP, pathology GS 4+5=9, EPE and margin+ at base (4mm, GS7), BLSVIs+, 10 lymph nodes resected (clear); stage upgraded to Pt3bN0M0
11/’13 - 5/’14, PSA 0.1 to 0.3
6/’14 SRT by IMRT/IGRT (68.2 grays/38 Fx) to prostate bed, ADT (6 months Lupron)
9/’14 - 8/’15: PSA: <.1, to 1.2
9/’15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; started 13 months of ADT3 (Lupron, bicalutamide, dutasteride) plus plus metformin, cabergoline, estradiol patches, prolia , vitamin D3, calcium. IMRT/DART (75 grays/50 Fx) to pelvic lymph nodes. Stopped ADT3 11/’16.
11/’15 - 5/’17: PSA .03 to 2.3.
2/’17: Rx finasteride added
5/’17: F-18 Fluciclovine (axumin) PET/CT scan finds 9 mm femur met. Restart ADT3; start monthly Xgeva, stopped finasteride.
6/’17 SBRT via IMRT (27 grays/3 Fx) to femur met.
6/’17 - 10/’17 PSA <.1; 1/18, .175

Argent
New Member


Date Joined Jun 2017
Total Posts : 10
   Posted 5/19/2018 6:31 PM (GMT -6)   
Good advice above. My experience when I was first diagnosed was shock. Nobody in my family gets cancer! We all die of cardiovascular disease. I was seriously scared. Just a few years to live, etc. nasty treatments ahead. But as time passed and I learned more I found that even with stage 4 cancer we can live a long time and have good quality of life. And the treatment, while no fun at all, is not the horrendous experience you may be think. Radiation therapy especially has advanced remarkably in the last several decades. My advice is to not spend too much time studying statistics and survival charts. For one thing, the numbers are based on old information. Treatment and results keep improving. Don't be brought low by the numbers. As you "get accustomed" to living with prostate cancer a lot of the fear will fade. Ask every question you have. Don't be afraid.
PSA 6/14=3.66, 6/15=8.41 (age then 67)
Biospy 7/15: 3/12 cores pos, 3%,20%,40%, Gleason 4+4
robotic radical prostatectomy 8/15 Gleason 4+4, L SV+, margins neg. 1/6 lymph nodes pos.
PSA 5 weeks later 0.92 bone scan, MRI, CT all neg
Choline 11 PET scan at Mayo showed a 2mm LN + in deep pelvis
10/15 began 18 mos leuprolide. 1/16 pelvic IMRT to 68 Gy.
PSA undetectable since 11/15.

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 623
   Posted 5/20/2018 4:21 AM (GMT -6)   
Lou,
Just want to add some more encouragement from a g-9 guy and let you know that your not in this battle alone. I always encourage people to find a great team and be your own advocate and then proceed with treatment but looks like you have already done this. As the guys have said you want to wait longer for your psa check. The mayo likes to wait 3 months and then decide on a course of action and you surely don't want to have any radiation done before 6 months you need that time to heal from the surgery. I started radiation 9 months after and still am experiencing some incontinence issues from the radiation and I was 99.5% dry before. The other thing as a couple of the guys have said walk and then walk some more it aids so much in your healing process both physically and mentally! As you can see from my signature that I have had two undectectable's now so even tho right now things feel pretty scary for you in all reality you will probably pass away from something other then PCA. If you get a chance go over to the ADT and SRT thread and read lots of success stories there and other guys experiences that have similar reports as you. Wishing you the best

Larry
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy
4-25-18 psa <0.10
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