newly dx'd- seeking info

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bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/8/2017 7:16 AM (GMT -7)   
Glad to have found this site the info so far has been very helpful and insightful.
Gleason 9- what are the usual treatments for this prostrate cancer, is surgery possible?

Post Edited (bjj0619) : 11/8/2017 7:19:03 AM (GMT-7)


John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 861
   Posted 11/8/2017 7:21 AM (GMT -7)   
What are your biopsy results?
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
10/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7930
   Posted 11/8/2017 8:14 AM (GMT -7)   
Welcome to HW. More information would help us respond better.

G9 is agressive, there are four basic treatment modes: active surveillance (AS), surgery, radiation (in a number of forms), and hormone therapy (HT). In advanced cases there are also chemo options.

Which one you chose depends on a number of factors including the gleason score, how aggressive is the PC, where is the PC (prostate bed, lymph nodes, bones), and so on.

Surgery depends on the details of the case, PC confined to the prostate is a candidate for surgery, once there are mets, surgery isn't as usefully. So, surgery is possible, but is it right for you?

That's the real question,
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, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/8/2017 8:15 AM (GMT -7)   
Received G9 (4+5) from pathology report after TURP. 10/26 have not had diagnostic biopsy or bone scan that why I am curious as to next steps.

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7930
   Posted 11/8/2017 8:28 AM (GMT -7)   
you've got two threads going on the forum. I just posted a longer reply that answers that question on the other thread.

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, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2512
   Posted 11/8/2017 8:53 AM (GMT -7)   
I'm very sorry about your husband's diagnosis. As a Gleason 9, he has an aggressive cancer...but know that there are many G9s here that are doing quite well, including myself.

Typically, with a G9 diagnosis there is a bone scan to see if there's been any spread. Ask your doctor about that if it's not already set up. As for treatment, there's surgery and several types of radiation, which would include hormone therapy. Some guys with more aggressive cancer forgo surgery and opt for radiation since there's a greater chance that the cancer may have extended beyond the prostate. (That's what I did.) But there are lots of different treatment options and you should investigate them all thoroughly before you make a decision.

Where are you located? We might be able to provide some direction into doctors/specialists that you and your husband can talk to. Also, if you can create a signature (see mine below) that will help us in our response to you. Good luck to you both and we'll try to 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

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/8/2017 11:28 AM (GMT -7)   
Located in Chicago. Hubby's urologist has 40+ years, hospital he affiliated with has a stand alone clinic not sure what he will recommend, I just want to know what our next steps are. Will he need an oncologist, radilologist? I will definitely ask about bone scan and MRI to detect if Ca has progressed outside the prostrate hopefully that will help us decide on a form of treatment. He has been generally healthy, but has lost some weigh the past 3 months which we attributed to his eating healthier never assuming it mught be cancer. Although it is his body, I feel like I will have to be the one to make sure he is receiving the best of care as he has always been passive when it comes to doctors and his health issues, just not sure how aggressive I should be at this time we will see his urologist tomorrow. Thanks for the valuable info so far.

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7930
   Posted 11/8/2017 11:37 AM (GMT -7)   
His weight loss is unlikely due to cancer.
You'll want to consult with a few doctors, URO, RO (maybe a couple of ROs). You might get a referral to a Medical oncologist who specializes in PC. See what your URO recommends as a starting point. Others here might be able to recommend doctors and treatment centers in your area.

Given the G9, be aggressive. Generally PC grows slowly, so you have a time to make an informed decision - that is you don't need treatment today, but don't take too long to decide on a course of action.

We often see wives here helping their husbands with research, support, etc. I think it's great that you can work together as a team to help each other.

It won't be ease to deal with all this - it can be overwhelming at times, there will be problems, but you can make it and there is every possibility of a good outcome.

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, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2512
   Posted 11/8/2017 12:00 PM (GMT -7)   
Urologists are surgeons by training, although not all actively perform surgeries. But your husband's uro would most likely give you the surgical perspective. The overall experience here is that urologists generally aren't fully knowledgable about radiation and for that perspective you would need to talk to a radiation oncologist.

In Chicago you have the Chicago Prostate Cancer Center, which has a good reputation for brachytherapy (radioactive seeds). In G9 patients, brachytherapy is generally combined with external radiation (IMRT). Others might be able to provide suggestions for other ROs, we well as surgeons if you talk to one in addition to your husband's uro.

Unfortunately, you're at the part of the journey where you are drinking water out of a fire hose. I hope you have a good consult with the uro tomorrow and you start having a better idea of your options.
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

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/8/2017 12:09 PM (GMT -7)   
Thank you Andrew for encouraging words.
My fear is that although his urologist has a wealth of experience, he is older, and I am wondering how up to date he is on the newest technologies and treatments. His TURP went well, but when I asked about laser surgery prior to the procedure, he frowned on it.
I just pray that we develop a good team In order to give my hubby the best shot of a cure or at least buy us some years together.
G9 (4+5) found Post TURP on pathology results
Grade Group 5
PSA: 1/16-1.2
2/17- 2.4
BPH dx: 2011-TURP went well 10/26/17

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7930
   Posted 11/8/2017 12:29 PM (GMT -7)   
Advanced cases are often managed with a team. Find one.

You have every reason to hope for years - there are a lot of treatment methods out there today for PC. If one fails, you have others to turn to. Years and years is a reasonable expectation.

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, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 114
   Posted 11/8/2017 1:43 PM (GMT -7)   
I’m a GS9 and what Michael T and In the shop said is very true. GS9 is high risk, aggressive cancer. You need to speak to doctors in both fields. Radiation and surgery. URO’s are surgeons and will push that direction. But with GS9, being as aggressive as it is, some cancer may have already escaped the prostate. That is why so many GS9’s opt for radiation. Or as in my case and Michael_T, triple play of ADT, brachy and radiation. They want to throw everything at it. The theory is, if it has escaped, and the patient chose surgery, radiation will probably still be needed. So why go through both procedures. The choice of surgery or radiation will be up to you and your husband. The side effects of each may play a roll in your decision, but you honestly need to find that oncology team. A team that works together for the patients benefit and not because they only push their treatment. I had a surgical oncologist and a radiation oncologist at the same hospital. They conferred on my case and a decision was made. It was actually the surgeon who told me radiation should be the treatment. Thats what you want.
When you visit these doctors, ask as many questions as possible. Take notes. Getting overloaded with info happens quickly and you dont want to miss anything.
Keep the forum up to date with your progress. There’s plenty of info and advice here.
And take a deep breath. We’ve all been where you and your husband are today. You feel like you’re drowning. As you become more educated about Pca, things will ease. And when you finally make your treatment decision, it'll be like a new day.
Best of luck to our brother.......one GS9 to another

Dennis
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05, 10/17 <.05 (HT)
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 Brachy (Zelefsky MSK)
8/25/17 SHARP (SBRT) finished at MSK

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/9/2017 1:38 PM (GMT -7)   
quick update:
We saw the urologist/oncologist this am and he has conferred with my hubby's primary care MD. He says that since he believes that the PCa is localized (wont know for sure until Bone Scan and CT are done), they both feel like radiation is the way to go. Because he just had the TURP, it will be 4-6 weeks before they can start treatment. He is the urologist that did the TURP and sent the pathology specimen. He appeared to excessively explain that the Rectal exams and PSAs were normal and this was a surprise to him also.
I asked about HT along with radiation and he stated " I don't think that will be necessary".
(Anyone have thoughts on this). We did not discuss what type of radiation as I felt my husband was becoming too overwhelmed, and he appeared happy to hear that he would not have to have another surgery. As I stated earlier he has always been passive when it comes to doctors and hospitals therefore I always windup being the aggressive one, I think he relies on me for this because I am in the nursing profession, (Rehab Nurse)this however is out of my league. I know we are just starting this journey but so thankful to have found this site, it has been calming and insightful.
G9 (4+5) found Post TURP on pathology results
Grade Group 5
PSA: 1/16-1.2
2/17- 2.4
BPH dx: 2011-TURP went well 10/26/17

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2512
   Posted 11/9/2017 2:02 PM (GMT -7)   
Glad you're making progress. While I'm not a doctor, it's surprising to me he said he didn't think HT was necessary--for high-risk guys, it's pretty typical to have it. I suspect a radiation oncologist would give you a different opinion.

Did he give you a referral to an RO? They generally practice different types. For high-risk guys, one common combination is IMRT with brachytherapy boost. Several of us (including myself) have had that combo here--when combined with HT, we (semi-jokingly) refer to it as the Triple Play.

Regarding timing, if your husband does have HT, they typically start that two months prior to radiation. As far as I know, I don't think there would be any reason he would have to wait 4-6 weeks for that to start, but your RO would be able to give you more info there.
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

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7930
   Posted 11/9/2017 2:41 PM (GMT -7)   
That's a good report. Ask the RO about HT. The RO might have a different view on that. Since this is a primary treatment, I am not so sure about HT.

In any case you're making great 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, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/9/2017 2:50 PM (GMT -7)   
Thanks Micheal
I too am surprised that he is not considering HT. I did comment to him that I thought this was a pretty aggressive cancer he seems to think that because it appears localized it is curative as a matter of fact he stated " we're going for the cure" I am a little worried that we will be twiddling our thumbs til we see the urologist again meanwhile the cancer is growing. My husband seems to trust this urologist. This facility has it's own radiology dept, pathologist, and our uro is a surgeon surprised he did not recommend surgery. Iam going to push my husband to have the bone scan and CT asap so we can at least get some staging. May opt for a second opinion if hubby will agree. Any thoughts? All are welcome.
G9 (4+5) found Post TURP on pathology results
Grade Group 5
PSA: 1/16-1.2
2/17- 2.4
BPH dx: 2011-TURP went well 10/26/17

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2512
   Posted 11/9/2017 6:24 PM (GMT -7)   
If the cancer is localized, you certainly can go for the cure. That said, the purpose of the scans are to help show that it's localized. But perhaps his uro is not recommending the scans since his PSA is so low that it's unlikely to show anything. As you know, your husband's case is not typical in that he has an aggressive Gleason score (G9), but a low PSA.

I just looked back at this thread and I see that no one suggested getting a second opinion on his biopsy slides from Dr Epstein at Johns Hopkins. (I presume they could also give a second opinion on tissue from a TURP.) That could make sense to verify the G9 diagnosis and would also help you assessing your treatment options.

Talking to another uro could make sense, but it also sounds like your husband doesn't want surgery and that's their area of expertise. (Even if they don't recommend surgery.) But I would definitely try and line up ROs to ask them about the combo treatment and the need for HT. There's another thread about brachytherapy and HT in which Tall Allen just posted a link to info about the combo approach.
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

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3112
   Posted 11/10/2017 4:06 AM (GMT -7)   
Typically, another reason that HT is used in conjunction with radiation is to shrink the prostate before the radiation is started, to make for better focus and improved results. I'll reiterate the suggestions: Ask to have his slides sent for second opinion to Johns Hopkins, Talk to the RO's, and make sure you talk to specialists in each of the common flavors of RT (brachy, both low and high density), SBRT, external beam) and ask them if they would do HT in conjunction.

Yes, cure is possible even in cases like this, and it's good to go for it. Put together a team that you and your husband are comfortable with, and go for it. You DO have a little time, but you need to get moving. A short period of consults and informed decision making will have a huge impact on your results.
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

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6748
   Posted 11/10/2017 7:44 AM (GMT -7)   
I used Bostwick Labs for my referral biopsy analysis. They were very good to work with.

I did surgery, then IGRT. In NEITHER case did the docs, including surgeon and RO, want me to do HT first or in combo. They are of the "one thing at a time" school, and want to see what happens in reaction to each treatment.

I started thinking I was just barely a 4+4, most cores being less, but post surgery path showed a lot of 4+5. Because my PSA was never greater that 7.x, it became clear that I had one of those odd variants. The suppositions that you won't see anything until PSA is greater than "XX" are often true, but not in my case. Because of that, I am a vocal proponent of getting the bone scan as a baseline.

My treatment path may not be anyone else's model, but I'm still here 8 years later in the face of a statistical 5% chance to live to 3 years.

Some here think I refuse to die so that I can continue to lock political threads devil devil

But then whatever keeps you going is good!
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 9/12-3/13, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
Taxotere 10/17-?

Larry E
Regular Member


Date Joined May 2016
Total Posts : 112
   Posted 11/11/2017 4:18 PM (GMT -7)   
bjj0619,
During office visits it helps to record the doctor on your phone. Doctors will be giving a large amount of medical information and it is hard to remember all, or take notes.
Larry E
Dx 2015 62yrs Tulsa G-9 PSA 203 Distant bones mets
5/15 Fermagon initial ADT, Xgeva
7/15 Eligard /6mo Vit D3 7/15 Taxotere
8/16 New bone mets 10/16 Lung nodes
12/16 Provenge
PSA Sep 1.3, July 1.3, June 1.1, May 1.0

breakthecycle
New Member


Date Joined Jun 2017
Total Posts : 18
   Posted 11/12/2017 5:59 PM (GMT -7)   
Forum Moderator,

Just wondering why your statistics were 5% for 3 years?

Break the Cycle

bjj0619
New Member


Date Joined Nov 2017
Total Posts : 10
   Posted 11/22/2017 7:30 PM (GMT -7)   
Good news!
The CT scan results are in looks like its clear, no mets to lymph or pelvic wall, awaiting bone scan results and follow up with URO.
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