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steve0
Regular Member
Joined : Dec 2016
Posts : 198
Posted 11/25/2020 10:58 AM (GMT -6)
My bone scan was clean a couple of times. It wasn't until they did a Pet scan they found METS
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beazerman
New Member
Joined : Nov 2020
Posts : 9
Posted 4/3/2021 11:23 AM (GMT -6)
Just got a call from my urologist. I had prostate biopsies on Wednesday. He told me that I have significant cancer (Gleason 10) on one side of my prostate. That's hard news. So, for now, I have a Gleason 10, PSA 9.1, relatively recent bone scan clear.

The latest news is hard. It is also hard to know that my neglect of being ACTIVE in surveillance in the last 5 years or so has put me in this situation. In 2016, my Gleason was 7 and PSA around 5.5. I did nothing and just lived my busy life. Now this.

I've been doing plenty of research preparing for whatever the next steps are. I am strongly inclined to do proton therapy at Loma Linda, but am doubtful about getting timely support for that by my insurance company. And I need to do something right away. So, my next option is radiation (IMRT). I want the SpaceOAK to protect my rectal area because I have chronic ulcerative colitis and really need to protect that area from the radiation. I suspect that the doctor will want to begin hormone therapy because of my Gleason.

Is the Gleason 10 a death sentence, or is this still potentially a treatable situation?
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Stephen S
Regular Member
Joined : Oct 2019
Posts : 307
Posted 4/3/2021 11:50 AM (GMT -6)

beazerman said...
Is the Gleason 10 a death sentence, or is this still potentially a treatable situation?

No it is not an automatic death sentence. If it remains capsule confined you have a decent shot at wiping it out.

Dont look back. Look forward. These biopsies are not perfect. They only sample tiny slivers. Did the urologist say what % of the troubled cores were cancerous?

You will get great advice here if you can share what the pathology report said (type it word for word).
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Sr Sailor
Veteran Member
Joined : Sep 2015
Posts : 1001
Posted 4/3/2021 11:56 AM (GMT -6)
I am sorry that you find yourself in this situation, but it is by no means a death sentence. Obviously, you want to initiate treatment right away.
In cases such as yours, many advocate a triple approach, two kinds of radiation combined with androgen deprivation therapy ('hormone therapy'). The two kinds of radiation often include IMRT and brachytherapy (there are two versions of the latter). If you peruse my background, you will see that my rad oncologist used SBRT (stereotactic body radiation therapy) instead of brachytherapy, but this was done in a research setting and is not common.
It is certainly possible to use proton therapy as one of the radiation modalities. You may find a recent thread on this topic of interest:
https://www.healingwell.com/community/default.aspx?f=35&m=4242495

Needless to say that you need to seek advice from a top notch radiation oncologist.
Since you appear to be on the left coast, Dr. Chris King comes to mind; he is at UCLA Medical School.
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garyi
Veteran Member
Joined : Jun 2017
Posts : 2101
Posted 4/3/2021 12:41 PM (GMT -6)
You can't do any better than Dr. Chris King. He is a world class RO with an open, unbiased outlook.

Note that I, too have ulcerative colitis, and a number of RO's and MO's suggested surgery, which I had. My G was lower than yours', at 3+4. Trouble is a large tumor remained on my cavity wall, and I had to go through SRT, anyway. It fired up my colitis, added radiation proctitis on to of that, and it took me almost a year to come through that miserly.

Adding insult to injury, even after SRT my PSA never went undetectable. Do a lot of in-depth research quickly, get as many professional opinions as you can, and go with your gut. Take anecdotal suggestions, from those without your complications, as well meaning theories. Good luck!!
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Pratoman
Forum Moderator
Joined : Nov 2012
Posts : 8567
Posted 4/3/2021 1:42 PM (GMT -6)
Sorry to hear of this development. But as others have pointed out, no, its not a death sentence. And even if its spread outside the prostate, it can be controlled and managed as a chronic disease for many years.
Did you have an MRI done? It might be useful to see if its spread outside the prostate capsule. And not sure what the "recent" means in recent bone scan, but if its been a while it might be worth getting another one done.

You want to be sure it hasnt spread to distant regions/bones before making treatment decisions.
But again, cant be emphasized enough, even in a worst case scenario, it can usually be managed for many years.
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beazerman
New Member
Joined : Nov 2020
Posts : 9
Posted 4/3/2021 5:48 PM (GMT -6)
Bone scan was in November.

I have an MRI scheduled for later this week. Unfortunately, it is for a different issue. An ultrasound spotted a 3/4" diameter mass on my liver, and the MRI is to evaluate that. I'm trying to get the different doctors to work with my insurance company to expand the scope of the MRI to include by pelvic area so they can include the prostate. It makes perfect sense to me, requiring me to only have to endure the MRI once. Ultimately, it seems like it would be a cost savings to the insurance company also, but this is probably thinking outside the box a little bit. Of course, I'm hoping I don't also have cancer in the liver . . .

From what I have read, the trifecta approach seems likely with IMRT, brachy, and hormone therapy. Geez. What will the side effects of all of that? I was intending to advocate for the SpaceOAR because of my UC. Not sure if that is still called for with brachy.

Today has definitely been a wake up call. My peace comes from my faith in Christ and trust that my life on this earth is only transitory anyway. But still, I am hoping that a treatment plan can be implemented that will prolong my life that is characterized by quality so I an be there for my family.

A big decision looms. I've been aiming to work another couple of years to get vested in my employer's retirement plan. With all of this on the plate, I just may need to have a change of plans.
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Mumbo
Veteran Member
Joined : Nov 2018
Posts : 1206
Posted 4/3/2021 6:12 PM (GMT -6)
beazeman - not the best news but look at DjinTonic’s history for example and there is a long thread going back years, The Gleason 9 and 10 Crew (Part 4), that you can search for. Some people do quite well for a long time so it is not a death sentence in many cases. You do not have a crazy high PSA at <10 so that is in your favor for treatments to be successful.

What do you do now? Take a deep breath and think about it rationally if you can put the emotions aside for a moment which is really tough right now. You have a serious case of PCa and you should get the best treatment(s) possible from the best doctors possible. Since you are in CA, you have a lot of good resources and you should see if you can get to any of them and if your insurance covers them. A quick explanation of your situation will get you to the head of the line at many well known places. UCSF is a well known center near you as Sailor mentioned.

I would get a second opinion on your biopsy pathology and genomic testing on a sample of the biopsy cancer to obtain as much info as you can on your cancer. A MRI would be good also to see if the cancer can be visualized within the prostate capsule.

Please share the specifics of your pathology report when you get a chance as it might provide some insight to your PCa. Hang in there during this tough period.
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DjinTonic
Veteran Member
Joined : Dec 2019
Posts : 1312
Posted 4/3/2021 7:28 PM (GMT -6)
Hi beazerman. I would place great weight on expert opinion at a prostate center of excellent regarding their advice for your particular status. However, I would not rule out surgery from consideration unless, of course, your docs do. Your scan results will probably figure into their advice for your best treatment options.

Surgical management versus combination radiotherapy in Gleason score 9-10 prostate cancer (2020)

"Background: For men with Gleason score 9-10 prostate cancer, studies have demonstrated conflicting results on the outcomes from combination radiation therapy (ComboRT) with external beam radiation therapy plus brachytherapy boost versus radical prostatectomy (RP), with or without adjuvant radiation therapy (ART). Differences in patient selection and management may explain some of the disparate outcomes of prior reports. Methods: The Surveillance, Epidemiology, and End Results database identified 10,396 men managed with ComboRT versus RP (+/-ART). Competing-risks regression analysis with treatment propensity adjustment defined hazard ratios (aHR) for prostate cancer-specific mortality (PCSM), controlling for patient-specific demographic factors. To explore the possible effect of patient selection, analyses were conducted before and after excluding men from analysis if they had evidence-based indications for ART (adverse pathology, i.e. pT3-T4 or positive margins) but did not receive it. Results: Median age was 64 years; median follow-up was 69 months. Five-year PCSM was similar between patients treated with RP (with or without ART, regardless of pathologic features, N=8,934) and ComboRT (N=1,462) (6.9% vs 8.1%, aHR=0.94, 95% confidence interval [CI] 0.78–1.13, P=0.51). After excluding RP-treated men with adverse pathology who did not receive ART (N=4,527 excluded), patients treated with RP+/-ART (N=4,407) had improved 5-year PCSM compared with those treated with ComboRT (5.3% vs 8.1%, aHR=0.74, 95% CI 0.60–0.91, P=0.004). Conclusions: For Gleason 9-10 prostate cancer, ComboRT was associated with similar PCSM compared to RP, but risk-tailored surgical management may be associated with superior PCSM."

[Emphasis mine]

Keep in mind, as the Abstract explains, that the good results in the RP group applies to those men who either (1) had no adverse findings after RP or (2) had an adverse finding and completed their primary treatment with adjuvant RT. Excluded were men with post-op adverse findings who declined adjuvant RT. Note also that today most G9-10 men opting for RT have what is known as MaxRT: external RT + brachy boost + 12 months (avg.) ADT.

Djin
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beazerman
New Member
Joined : Nov 2020
Posts : 9
Posted 4/4/2021 7:07 AM (GMT -6)
Thank you, DjinTonic.
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DjinTonic
Veteran Member
Joined : Dec 2019
Posts : 1312
Posted 4/4/2021 8:03 AM (GMT -6)
You're very welcome. Please understand that even though I opted for surgery after a G10 diagnosis, my intention is not to lure you away from radiation and push you toward surgery -- I think the RP and the RT routes in many high-risk cases may be equally valid. Even if your docs agree, you should, of course, make your own decision based on the many factors which I'm sure you're already reading about. I only brought surgery up because you didn't, and it tends to get a bum rap from many -- but not all -- here smile

Djin

Post Edited (DjinTonic) : 4/4/2021 8:24:36 AM (GMT-6)

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beazerman
New Member
Joined : Nov 2020
Posts : 9
Posted 4/5/2021 8:13 PM (GMT -6)
Here are the details from my prostate biopsies – 3/31/2021

Starting Lupron right away. Urologist is ordering several scans to find out more about the cancer. Bone scan in November was clear, but I don't know if they will do it again. It appears that the strategy (in addition to hormone therapy) will be external beam radiation. We are looking into combining that with high dose brachytheraphy. Looking to have SpaceOAR placed to provide additional protection because of chronic (well managed currently) ulcerative colitis.

No good news in any of this, as far as I can tell. But, it is what it is. I will hope and pray for the best possible outcome.




PROSTATE, RIGHT LATERAL MID BIOPSY:
INVASIVE ADENOCARCINOMA, GLEASON SCORE 4+5=9, INVOLVING BOTH TISSUE CORES,
APPROXIMATELY 10 MM IN GREATEST DIMENSION, AND INVOLVING
APPROXIMATELY 60% OF THE TISSUE SAMPLED
THERE IS NO LYMPHOVASCULAR, PERINUERAL, OR EXTRACAPSULAR EXTENSION
IDENTIFIED.

PROSTATE, RIGHT LATERAL BASE BIOPSY
INVASIVE ADENOCARCINOMA, GLEASON SCORE 5+5=10, INVOVING A 9 MM SEGMENT OF
THE TISSUE CORE, APPR0XIMATELY 90% OF THE TISSUE SAMPLED
THERE IS FOCAL PERINEURAL INVASION
NO LYMPHOVASCULAR INVASION OR EXTRACAPSULAR EXTENSION IS IDENTIFIED

PROSTATE, RIGHT APEX BIOPSY
INVASIVE ADENOCARCINOMA, GLEASON SCORE 5+5=10, INVOLVING A 1 MM SEGMENT OF
THE TISSUE CORE, APPROXIMATELY 5% OF THE TISSUE SAMPLED
THERE IS NO LYMPHOVASCULAR, PERINEURAL, OR EXTRACAPSULAR EXESNSION
IDENTIFIED

PROSTATE, RIGHT MID BIOPSY
INVASIVE ADENOCARCINOMA, GLEASON SCORE 5+5=10, INVOLVING A 4 MM SEGMENT OF
THE TISSUE CORE, APPROXIMATELY 35% OF THE TISSUE SAMPLED.
THERE IS NO LYMPHOVASCULAR, PERINEURAL, OR EXTRACAPSULAR EXTENSION
IDENTIFIED

PROSTATE, RIGHT BASE BIOPSY
INVASIVE ADENOCARCINOMA, GLEASON SCORE 5+5=10, INVOLVING AN 8 MM SEGMENT
OF THE TISSUE CORE, APPROXIMATELY 80% OF THE TISSUE SAMPLED.
THERE IS NO LYMPHOVASCULAR, PERINEURAL, OR EXTRACAPSULAR EXTENSION
IDENTIFIED



NO EVIDENCE OF MALIGNANCY IN ANY OF THE 5 BIOPSIES OF THE LEFT PROSTATE
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