Advice on Next Steps

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NewHere123
New Member


Date Joined Aug 2017
Total Posts : 3
   Posted 8/25/2017 12:34 PM (GMT -6)   
Hello, my husband (young 49 years old) was diagnosed in mid-late June 2017 with prostate cancer after all five of the six biopsies came back GS 8 and one at GS 7 (& PSA 24+ in May 2017). He moved to another local hospital, Cleveland Clinic, for a second opinion and a doctor that could perform the robotic RP.

The CT scan and MRI revealed no concerns they could see. Within less than a week after the scans, the doctor was able to find a time (with our request to expedite) for the RP in the first week of July. The RP was completed with one nerve spared (closest to the GS 7 biopsy) - quality of life due to his age.

Post op report/pathology shows:
-GS upgraded to 9
-Positive margins (partially into the seminole vesicles and described as "bulging" to the bladder)
-Lymph nodes clear - some good news, right?

4-5 weeks after surgery PSA is 1.8. My husband did not want to waste too much time to the RP when the CT scan and MRI came back as "clean" to the eye. Two local urologists (his surgeon and original urologist from another reputable local hospital system) talked about a couple of options - and really the best course was the RP followed by EBRT.

Undoubtedly, we are more concerned and understanding of the PC severity and the high likelihood of reoccurring as we begin to read more -and we feel blindsided as there was no family history of PC. The urologist recommended the follow-up with the radiation oncologist, which we had our meet and greet this week and like him very much (explained the options in some detail - although not so much proton therapy, as this clinic does not offer it). The oncologist mentioned my husband's case as "tough" during our conversation and said he would consult with his internal team of doctors to come up with the best treatment plan - but he is unable to start EBRT until 3 months out from the RP - which translates to early October - to give sufficient time for the urinary incontinence to improve. He suggested the EBRT - then mentioned possibility of hormone therapy combination, although unclear if now or down the line. Seems like he needs to consider best plans yet.

Today, we finally requested all the medical records from 2017 from the two hospital systems - so we should have them in 7-10 business days.

Questions we have - and any advice is welcome here:
1. Thought it might be best if we take the next few weeks to get a second opinion on treatment options post RP from one of the top cancer hospitals. Is there any benefit to having another opinion post RP? If so, where would we go (e.g. Sloan Kettering, John Hopkins - or any specific doctors)?
2. Any suggested treatment plans that has worked for you post RP to drop PSA levels to non-detectable? Seems like many on this site have had successful - meaning non-detectable PSA post RP - so would love to hear of anyone that had a detectable level post RP.

Thank so much for any help or insight you can provide! We have a toddler and young child, so hope to keep dad around!!

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8395
   Posted 8/25/2017 1:27 PM (GMT -6)   
NewHere123 said...
1. Thought it might be best if we take the next few weeks to get a second opinion on treatment options post RP from one of the top cancer hospitals. Is there any benefit to having another opinion post RP? If so, where would we go (e.g. Sloan Kettering, John Hopkins - or any specific doctors)?


You can certainly get a second opinion, but I would be very much surprised if the opinions will be any different. With his persistent PSA and his positive margins, adjuvant radiation is a logical next step. Cleveland Clinic has some excellent ROs - I've talked to Rahul Tendulkar, and he seems really good to me.

The hormone therapy they mentioned begins at least 2 months before radiation starts (They can leave your husband on it longer in order to give tissues longer to heal before radiation begins, especially with the bladder neck invasion). It continues throughout his 35 or so treatments and for several months up to 2 years afterwards. Just how long to continue it is a judgment call, but with his stats, I would think that it will be at least 6 months, and more probably 18 months.
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

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7640
   Posted 8/25/2017 1:55 PM (GMT -6)   
Welcome to HW, sorry you need to be here.

Sounds like you're getting great advice. Your choice on a second opinion, but likely you'll hear the same.

Detectable PSA post RP isn't the norm, but it happens. The G9 crew should be along shortly with more experiences. I'd pay attention to what TA's already said as that is the best treatment path - HT and then RT.

Hang in there and keep us updated on your progress,
Andrew
I'll be in the shop.
Age 57, 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
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

NewHere123
New Member


Date Joined Aug 2017
Total Posts : 3
   Posted 8/25/2017 1:57 PM (GMT -6)   
Thank you Allen and Andrew! Appreciate the reply and more satisfied that my husband treatment may be reasonable enough!

Post Edited (NewHere123) : 8/25/2017 2:02:25 PM (GMT-6)


Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 131
   Posted 8/25/2017 2:11 PM (GMT -6)   
Hello wished you didn't have to be asking these questions at such a young age. As you can see from my signature your husband and I haven almost identical stats . I'm a few years older only. I'm going again in October for my 6 month checkup we'll actually it. Will be 7 months then meeting with the RO again to decide if I will be getting hormone treatment or not with my SRT which I will start in mid October the oncologist wanted to wait 6 months for stuff to heal and to make sure no problems with incontinence which thankfully I have under control about 99.5%. I think all the walking I did really Was the biggest contributor to that! I'll be interested in what path they have you guys take.

Larry
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Pathology Report: Gleason 9, Seminal vessels and one nerve cancerous and removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7640
   Posted 8/25/2017 2:16 PM (GMT -6)   
and dad will be around for a long time. There are a ton of options for treatment and you've only used one.

There's every hope that dad will be around to embarrass teens, dance at weddings, and babysit grandkids.

It won't be an easy journey, but there is hope it will be a long one.

Andrew
I'll be in the shop.
Age 57, 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
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5599
   Posted 8/25/2017 2:22 PM (GMT -6)   
Once again the Tall one has hit all the important points and let me with little to say except "Hello, Welcome to the Forum."

As Tall said, with his positive margins, his Gleason 9 pathology, and his high-ish PSA before and after surgery, adjuvant radiation is indicated and he should receive concurrent hormone therapy. For men in his risk category the addition of hormones to the radiation makes a marked difference in the recurrence rate. The hormones will start a few months before the radiation and will last a number of months after the radiation is done. The hormones sensitize the cancer to the radiation and the hormones will stop the progression of the disease between now and the time radiation starts, which gives him some time to heal from the surgery.

One other thing. Since he's a fairly young guy and the doctor was only able to spare the erectile nerve on one side, he should take steps to minimize his sexual side effects. He should talk to his surgeon about a penile rehabilitation strategy. A normal healthy man will get several erections a day even if he is totally celibate. They happen while he sleeps during R.E.M. sleep. These nocturnal erections help keep the tissues oxygenated and prevent the development of fibrosis. When the erectile nerves are damaged these R.E.M. sleep-induced erections are affected too and things tend to shrink and atrophy. While a man is recovering from damage to his erectile nerves he should try to get several erections a week any way possible (pills, pumps, or injections) to keep his hydraulics in working order.

It's not too early to ask his doctors about it and I think it is best to start early since the hormones will gradually make him forget why such things are important. Best to have the plan in place.

Like I said, Welcome to the forum. Sorry you find yourself here but glad you found us.
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

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2411
   Posted 8/25/2017 3:06 PM (GMT -6)   
I'd also like to welcome you and glad you've got some good direction already. I would echo Peter's comment about penile rehab. Hormone therapy completely diminishes libido, with the practical impact that his "equipment" will never be used. Libido does come back after HT is over, so it would be important to do whatever you can to keep everything in working order even though he probably won't feel like it.

Good luck to you both and hope we can help!
Age 56, 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
3/17: T = 167, PSA = 0.13

NewHere123
New Member


Date Joined Aug 2017
Total Posts : 3
   Posted 8/25/2017 3:30 PM (GMT -6)   
Very thankful to hear these added responses! We had his follow-up with the urologist/surgeon too this week and he prescribed Viagra. I have to admit that was the last thing on our minds when we spoke to the doctor as the follow-up....seems like an important issue the doctor was driving home, although he didn't say why. He also asked much about the urinary incontinence, which my husband said is not too much improved from post RP. The RO told us this week that it's not linear healing on the urinary incontinence and he'll improve much likely in a couple of months? Thanks so much for all the comments - truly helps as we both work busy jobs with a 18-month and one elementary school age kids. Thanks again for the kind welcome!! Hope to keep the PC at bay for a very long time! Will keep posting and researching - never know what new treatments are on the horizon!

cspivak
Regular Member


Date Joined Aug 2014
Total Posts : 187
   Posted 8/26/2017 1:28 PM (GMT -6)   
Welcome to the forum. It does sounds like you are getting good advice from your current team. My husband was over the other side of the metastatic line when diagnosed, which of course meant large difference in treatment. But, it's three years later, and he's doing great (by virtue of being lucky, true).

Keep up the research - I've found it to be somewhat therapeutic for me, and lots of wives go that way. If you ever want a second opinion somewhere down the line (I agree with other posters, you don't need one right now), Johns Hopkins impressed us when we visited for that. Also, if you ever need to discuss post-radiation treatment options (which you may never have to do!), you will probably get the best advice from a medical oncologist, so keep that in mind if needed for later.

-- Carolyn
Dx 8/14, age 58, PSA 29, G9 (4+5), 11/12 cores, 3 bone mets
Lupron started 9/14, Xgeva 10/14, stop Xgeva 12/14
10/14 PSA 2.0, 12/14 1.1, 6/15 6.87, 6/15 Provenge,9/15 0.8
9/15 osteonecrosis, 6 wk iv antibiotics
1/16 PSA 4.8, 3/16 2, 2/16 spot RT hip
10/16 on Xtandi, 12/16 IMRT
5/17 PSA 8.6, 6/17 PSA 13, 6/17 lymph node biopsy MSI-H, off Xtandi
6/17 Keytruda(pembrolizumab), 7/17 PSA undetectable

Post Edited (cspivak) : 8/26/2017 1:34:18 PM (GMT-6)


halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 2989
   Posted 8/26/2017 7:08 PM (GMT -6)   
welcome to our club, and you're getting some great insights, and Cleveland Clinic is one of the great places to go for treatment...my dad was treated there for PC years ago.

Viagra isn't only for ED..but that is important. It helps increase blood flow down in that area, which is good for general healing as well. Keep us posted on your steps and process.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

schoolpsych
Regular Member


Date Joined Aug 2016
Total Posts : 143
   Posted 8/27/2017 11:04 PM (GMT -6)   
Yes, if the Viagra doesn't work initially, the Cleveland Clinic does have a nurse who specializes in penile rehabilitation/injection therapy. Don't wait too long on this. The importance of rehabilitation wasn't stressed enough (in my opinion) following surgery at the CC. You may need to ask for a referral. When Viagra only partially worked for me, I said "what's next" and only then did the surgeon tell me about this resource and refer me. The nurse's main location is at the Twinsburg CC hospital so it is easiest to get an appointment there but they also come to the main campus on scheduled days.
DX at age 50 July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
CT Scan, Bone Scan, and lymph node biopsy found one pelvic node positive
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic node
1st Lupron shot on August 19th (scheduled for 18 months ADT)
ART starting 5/17 ending 6/17. PSA undetectable since surgery.

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 2989
   Posted 8/28/2017 5:11 AM (GMT -6)   
Another thought about this...you asked about seeking consults at MSK or Johns Hopkins...the thing is, Cleveland Clinic is as good a system as there is. The top docs across the country (and the world, for that matter) all know each other at least by reputation. He'll get excellent care at CC and while his case is unique, there is also a standard of care that he'll get that is well agreed on by the best of the best.

For now, he has to heal from the surgery before the next steps begin.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Break60
Veteran Member


Date Joined Jun 2013
Total Posts : 1730
   Posted 8/28/2017 11:15 AM (GMT -6)   
Newhere123
I'm also Gleason 9 but now age 73 four years after RP. I hate to hear of young guys getting this disease. I had what I thought was PBH for 11 years before Dx with PCa when PSA suddenly doubled. Gleason 9 with positive margin is not surprising. It's aggressive stuff. ADT for 18 months or so along with IMRT is standard treatment. You should also ask about imrt to pelvic lymph nodes or at least get a ctpet scan to look for any mets there or elsewhere. It could save you another long period undergoing RT.
Good luck!
Bob
DOB January 1944 (now age 73)
PSA: 8/12 2.7; 5/13, 6.6 (actually double due to finasteride)
7/13 (age 69) Bx GS 4+5=9 (Epstein); 2 of 6 cores, 10%, 40%; stage Pt1c
9/13 ORRP, GS 4+5=9, BLSVIs+, margin+ (4mm,G7), EPE, 10 Nodes resected (clear); stage upgraded to pt3bN0M0
PSA: 11/13 0.1; 2/14 0.2; 5/14 0.3
6/14 SRT by IMRT/IGRT, 68.2 grays/38 Fx to prostate bed, ADT (6 months Lupron)
PSA: 9/14 to 8/15: <.1, <.1, .1, .3, .7, 1.2
9/15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; organs and soft tissue clear ; Start ADT3 plus plus Metformin, Cabergoline, Estradiol patch, Prolia , Vitamin D3, calcium. IMRT 75 grays/50 Fx to pelvic lymph nodes. Stopped ADT 11/16.
11/15-5/17: PSA rises from .03 to 2.3.
5/17: F-18 Fluciclovine (axumin) PET/CT scan finds abnormal uptake in intertrochanteric region of the proximal right femur compatible with skeletal metastasis measuring approx. 9 mm. No other adverse findings. Restart ADT3; start monthly Xgeva
6/17 SBRT, 30 grays/ 3 Fx to femur met.
7/17 PSA 0.3, T 3.0

TempFlightRestriction
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/3/2017 9:47 PM (GMT -6)   
Hello Everyone,

I am NewHere123's husband. Thanks to you all, and especially schoolpsych for your help and advice. I've scheduled a second opinion on the follow-up treatment with Dr. Tendulkar this week based on that advice. Two reasons being that the first oncologst did not put any emphasis on hormone treatment (none before radiation), and there was a strong recommendation out-of-channel to have the treatment performed at the main campus instead of the satellite location.

I found this research on using nanotechnology to kill cancer interesting as they tested it on prostate cancer cells: bigthink.com/philip-perry/scientists-create-molecular-machines-to-destroy-cancer-cells Perhaps it will be an alternative to radiation in the future.

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2259
   Posted 9/4/2017 5:12 AM (GMT -6)   
TempFlightRestriction, and NewHere123, welcome to both of you. This is a couple's disease, deeply affecting the physical relationship in a marriage. The mutual support is so important and helpful!

I've added you to the G9 Crew roster, and sorry it took so long. We've moved to a new home and have not had much forum time for over a week now. Here's a link to the 3rd thread of a series of these posts. It's just meant as a gathering place for those of us facing this diagnosis due to our kind of unique concerns. We're often into multiple simultaneous treatments, and quite likely will be managing a chronic disease. There are many of us here, and if you review the G9 Crew threads you'll find many people's stories. It can be encouraging just to look at the list of forum members there. I've included links to the first posts where I could find them.

You've been handed a challenging situation, and aggressive treatment/follow up is warranted. There are lots of treatments, and more coming frequently. There are studies advising new ways to sequence the treatments we have, looking at the timing and how effective they can be with different timing.

There are some very knowledgeable people here, and Tall Allen usually has very helpful links. Having said that, be sure you do your own research, look up the studies, read them in detail if you are comfortable with that type of information. Studies often have qualifiers, exceptions, side notes about certain risk groups, that may be helpful, and may temper the enthusiasm with which they're presented. Notably, there just aren't many G9 cases, and we're often lumped in with other risk categories, or ignored altogether.

Talk to your doctors, since no one here is a substitute for their full knowledge of your situation. No one here is a doctor, though sometimes they sound like they are. Consider what you hear on this forum as just a bunch of friends chatting at a coffee shop, a meeting of a club no one wants to join!

Here's the link:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

Post Dx:
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

Post Edited (Redwing57) : 9/4/2017 5:15:11 AM (GMT-6)


halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 2989
   Posted 9/4/2017 6:13 AM (GMT -6)   
A thought for you on going to CC main campus vs suburban satellite: It may be that you could go downtown for major treatments or consults, but do brief visits at the satellite. The doctors are at both sites, it's more a question of where the special equipment might be.

I absolutely realize how much of hassle it can be to get to CC Main, depending on where you're coming from. Plus, it covers what, 6 city blocks? (But there are some great places to eat in Cleveland Heights and University Circle...I have a particular affection for Tommy's)
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Octorobo
Regular Member


Date Joined May 2009
Total Posts : 373
   Posted 9/5/2017 8:10 AM (GMT -6)   
Welcome

I guess you have learned the secret hand shake to this very selective club. You have been well received. The information seems to be right on track for the journey you are going on. I would like to comment on your deciding where to have the radiation. I was in a similar situation as I had a choice whether to go to the main M D Anderson campus in downtown Houston- 55 mins from my office door or go to the satellite campus - 20 mins from the office. My world class RO put it in very clear terms- I would be someone else's patient out in the suburbs. There was no going back and forth. The main campus provided vallet parking for very quick in/out convenience. As it turned out, here's what happened on my 35 trips to downtown. Five lunch dates with my wife/family, 26 business meetings/sales calls that required my attendance and only 4 times did I make the trip "just for RO treatment" with the world class specialist. In hind site, there is no question that for me, I want the world class RO able to walk over and check on me if need be. The two year results so far could not be better. I would love to tell you that I have lost 50 pounds, grown seven inches taller, have a full head of dark hair and my wife bought me a new Bently for our anniversary. Those things pale in the scope of what is at stake. The reality is all of my post SRT tests have been <.006. I thank God, great world class medical treatment, and the information I have received here on this forum helped this to happen. I will be praying for the same results for you, your wife, and your children. I hope to be reading your posts for many years to come.
Diagnosis in August 2007
Age 57
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 5/2016 <.006. 12/2016 <.006, 5/2017 <.006

schoolpsych
Regular Member


Date Joined Aug 2016
Total Posts : 143
   Posted 9/5/2017 10:11 AM (GMT -6)   
TempFlightRestriction,

Thank you, as I mentioned in Email, the community here helped me greatly so I'm always hopeful that I can help others out in some way in return. Great to hear that you are meeting with Dr. Tendulkar. Make sure to ask him if I get a commission for the referral if you go with him (ha ha). Seriously though, please do keep us up on how it goes. It is no BS, once we meet a new guy here, we are all genuinely interested in hearing how it is going for you.

Octorobo,

The satellite vs. main campus treatment is an interesting aspect that I don't really see discussed often. I did wonder what others thought about this. When I was first diagnosed and looking for ideas, I met two guys from our forum here for lunch. One of the guys had the external beam portion of his treatment at the main campus of his hospital, the other could have but instead, had it at a regional center. The guy who had it at the main campus had no significant complications, the guy who had it at the regional center, unfortunately, did. The guy who had it at the regional center told me that he has wondered since if his situation would have been better if he would have gone to the main campus instead. Of course, there is no way to know, maybe he still would have had the complications. Still, his words stuck with me. Fast forward about six months and I'm discussing my need for s/art with my doctor at the main campus. When I mentioned the option of getting the treatment at the hospital's satellite location closer to my office, my doctor was very strong and clear in telling me that the radiation treatment was something that I would want to have done at the main campus. I'm sure there are many guys who do just fine getting RT at the smaller, regional facilities, but as a guy looking for every possible advantage, I took the main campus treatment route.
DX at age 50 July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
CT Scan, Bone Scan, and lymph node biopsy found one pelvic node positive
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic node
1st Lupron shot on August 19th (scheduled for 18 months ADT)
ART w/Dr. Rahul Tendulkar 5/17 -6/17. PSA undetectable since surgery.

Post Edited (schoolpsych) : 9/5/2017 10:26:29 AM (GMT-6)


TempFlightRestriction
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/12/2017 11:18 AM (GMT -6)   
Just a follow-up. I took schoolpsych's advice and met with Dr. Tendulkar for a second opinion on follow-up treatement, and boy am I glad I did!

My post-operative PSA 6 weeks after surgery was 1.83.

I saw the first doctor at a satellite campus. He was friendly, but seemed to be going by rote. He just mentioned waiting 1.5 months and then external beam radiation and that he 'may follow with hormone treatment' after the radiation.

Since it was about a month after the last test, I requested PSA lab work in preparation for meeting with Dr. Tendulkar. It had risen to 1.99 (same lab), which was good information for the 2nd opinion. Dr. T listened very attentively and tailored things to my situation. He is also going to wait a few months while the incontinence heals, but the big difference is that I walked out of his office with a 6 month shot of Lupron which will hold that remaining cancer at bay while that happens. Plans are to meet again in December with another PSA test immediately before that.

The other thing was that Dr Tendulkar took as much time as we needed and the meeting did not feel rushed.

So for the satellite vs. main campus discussion, my money is on the main campus. Dr. T was willing to oversee treatment at the satellite if I wanted, but in this game we should stack the cards in our favor to the greatest reasonable extent, so main campus, here I come. In reality, the difference in travel time will not be that great, especially if rush hour can be avoided. The Cleveland clinic lets you pull up, drop off your car, get your daily treatment, and pick up your car without dealing with parking garages.

I did learn that the cancer grade was most likely always the same, as opposed to perhaps starting out at a lower Gleason number and mutating over time.

I spent most of the night before the second opinion appointment doing research and preparing a list of questions. The stickies here were very helpful in that endeavor.

Notam
Regular Member


Date Joined Jul 2017
Total Posts : 37
   Posted 9/13/2017 8:20 PM (GMT -6)   
TFR -

I was at CC last Fri. and the valet service at Taussig was so backed up I used the B Lot garage. $10 but not that far of a walk over the skyway really.
59@dx - no family PCa history
01/17 - 5.65 PSA, DRE+ Rt Base node at routine physical
04/17 - 6.67 PSA, cT2a at Uro consult
06/17 - TRUS-Bx 6/14 cores+, all G(3+4)=7; 10%x2,60%,70%,90%x2; PNI+Cribriform Morphology
08/17 - CT, Bone Scan Neg
09/17 - 3TmpMRI EPE w/ Rt NVB invasion PIRADS-5 cT3aN0M0 Stage III
Start Casodex/Eligard

schoolpsych
Regular Member


Date Joined Aug 2016
Total Posts : 143
   Posted 9/13/2017 8:38 PM (GMT -6)   
Norman,

If you are going for treatment, like a radiation session, they will give you a parking voucher when you check in. This voucher is good for free valet or the garage. For my late afternoon appointments I luckily didn't run into delays.
DX at age 50 July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
CT Scan, Bone Scan, and lymph node biopsy found one pelvic node positive
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic node
1st Lupron shot on August 19th (scheduled for 18 months ADT)
ART w/Dr. Rahul Tendulkar 5/17 -6/17. PSA undetectable since surgery.
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