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-   -   How dire is this path report. Gleason 5+4 (https://www.healthboards.com/boards/cancer-prostate/1052272-how-dire-path-report-gleason-5-4-a.html)

IADT3since2000 06-08-2021 02:13 PM

Re: How dire is this path report. Gleason 5+4
 
Hi Djin,

I know you have given the surgery versus radiation question a lot of thought and have concluded that surgery is a worthy option for high-risk cases, as have some experts. Here is my view of your comments from a viewpoint that sees radiation first, skipping surgery, as a sound option.

[QUOTE=DjinTonic;5511159]Surgery is monotherapy for high-grade disease only if the path report indicates the PCa was prostate-confined and there is no persistent PSA. If not, in the conditions I posted above, adjuvant RT (+/- ADT) completes primary treatment.[/QUOTE]

Yes, that mostly makes good sense to me. I'll go further and say that positive margins often prove harmless in the long term, not requiring treatment. By "persistent PSA" I take your meaning as an ultrasensitive PSA that is rising, especially when it passes 0.04 and continues upward.

[QUOTE=DjinTonic;5511159]ADT for invisible micromets outside the pelvis is no different for men having RR or RT. The difference is that post-RP PSA is a precise measure of what's going on; PSA post primary RT definitely is not. This is a crucial difference.[/QUOTE]

You are focusing on micromets outside the pelvis. Inside the pelvis, there is a definite difference, with many of us at sufficient risk having both our prostates and pelvis treated by radiation, even though there are no specific targets in the pelvis. That difference looks important to me, because research in the past half dozen years, using our now powerful, advanced scans, has shown that a large proportion of metastases early on are in the pelvis and therefore within the kill range of pelvic radiation. My own treatment involved 78 Gy of radiation to the prostate and 46 Gy to the pelvis.

So I agree that there is no difference between RP and RT for invisible micromets outside the pelvis, but the issue is a lot smaller for those who get pelvic radiation, thanks to what we now know about location of early metastases. RP patients are clearly running an added risk regarding invisible micro mets in the pelvis.

I agree that PSA post treatment is much more precise for RP patients than for RT patients, but a lot is known about PSA patterns after radiation, and early clues about potential recurrence can now often be addressed with imaging and other testing. To me, the difference is in terms of usefulness rather than being critical, but it may be a "glass half empty/half full thing".


[QUOTE=DjinTonic;5511159]Whether surgery alone was successful is known shortly after surgery.[/QUOTE]

Most unfortunately, recurrences after surgery occur for many years; I've seen research indicating they can occur up to fifteen years after surgery, and that was the longest follow-up studied. Many of these will be quite mild, but some will be serious and potentially lethal if not dealt with, and sometimes even when they are dealt with. There is an abundance of research that demonstrates the long tail of recurrences after surgery and radiation, though prospects are usually better if the recurrences occur after a number of years have passed. I can provide links to studies if you wish to see them.



[QUOTE=DjinTonic;5511159]ADT is needed to render PCa cells more sensitive for men choosing RT.[/QUOTE]

That is partially true, partially false. Research has proven that patients do better who have intermediate-risk prostate cancer with a short course of radiation, and a longer course for high-risk patients, but patients at low risk (generally active surveillance would be the best course) and some favorable intermediate-risk patients do just as well with no ADT as they do with ADT, so ADT has been judged unnecessary.

[QUOTE=DjinTonic;5511159]Micromets outside the pelvis will make their presence known;[/QUOTE]

The trouble is that they often do not make their presence known for a long time, during which they often seed more metastases. Now, with advanced scans, these mets can often be spotted at a very early stage when there are fewer than a handful of them. To me, if a patient is at risk, it is wise to search out potential early mets with scans rather than waiting to be clobbered with serious, extensive cancer. I'm sure that makes sense to you too.

[QUOTE=DjinTonic;5511159]ADT isn't going to eliminate them and ADT is not given prophylactically for men like me, for whom RP was successful monotherapy.[/QUOTE]

While ADT won't eliminate micro mets, it often does knock them back, perhaps into a dormant state, though not forever.

Regarding ADT to support RP for higher-risk patients, until recently research indicated there was no benefit. But I've seen mentions of recent research showing some benefit of supportive ADT for some RP patients, which runs counter to what we have accepted as conventional wisdom. I would like to learn more about that.

[QUOTE=DjinTonic;5511159]Two years of ADT is no walk in the park.[/QUOTE]

That is true for most but not all patients. I've heard experts state that about 10% of ADT patients get the benefits with virtually no side effects. (Unfortunately, not I.) However, effective use of known countermeasures will substantially reduce or eliminate most side effects, making ADT quite tolerable for many of us, including me. I am especially interested in the old diabetes drug metformin for countering a subset of ADT side effects, such as weight gain, increase in blood pressure, and the likelihood of metabolic syndrome. Metformin also appears to foster even better results from radiation, though the trial to prove that has not completed.

….Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

john_ct1 06-08-2021 02:32 PM

Re: How dire is this path report. Gleason 5+4
 
Jim,

"However, effective use of known countermeasures will substantially reduce or eliminate most side effects, making ADT quite tolerable for many of us, including me."

What countermeasures did you employ? I keep hearing that consistent and intense weight training is very effective.

DjinTonic 06-08-2021 05:02 PM

Re: How dire is this path report. Gleason 5+4
 
Jim, "persistent PSA" occurs when a the [i]post-RP PSA[/i] is detectable on the standard PSA test (i.e. the results are not <0.1) after an adequate waiting period, of course. This generally means that the are significant remaining sources of PSA that need to be investigated. For high-risk men, it often signals the need for adjuvant treatment. It is a term of art and is the subject of studies, which I believe use a criteria of post-RP PSA greater or equal to 0.1. In other words, a high-risk guy who is pT2 R0 N0 is still going to be advised adjuvant therapy if there is persistent PSA.

Choosing RT instead of RP as primary treatment certainly [i]is[/i] a valid option! I have always said that the major treatment algorithms/guidelines list both as basically equally valid options (barring specifics in one's status that clearly makes one a better choice). My point is that too many dismiss RP out of hand. I do not think that anyone choosing primary RT is making a bad choice.

Please keep in mind that I am specifically interested in, and addressing, treatment for high-risk/high-grade disease. For these men, my point was that 2 years is a long time for those for who do not react well to ADT. And in my case, e.g. it may have been 2 years of overtreatment regardless of the effects (or perhaps not -- I'm not at all clear what's happening to pattern 5 PCa in the time it takes RT to exert its full effect).

I agree fully about scans, and a newer-type scan may well be part of the workup after a high-risk diagnosis. D'Amico's validation of RP for high-risk is for [i]prostate-confined or locally advanced high-risk/high-grade disease[/i]. I'm not saying RP is the way to go if distant mets (of any size) are identified at diagnosis.


Djin

john_ct1 06-09-2021 02:00 PM

Re: How dire is this path report. Gleason 5+4
 
Well guys things just keep getting worse for me! I had a CT and Bone scan this morning. Bone scan was negative but the CT scan showed an enlarged pelvic lymph node measuring 3 cm x 2 cm... "Neoplastic etiology is suspected".

So it looks like cancer has gotten out. I'm waiting for a call from my urologist. Does this rule out surgery and only leave RT, Hormones and/or chemo? I'm quite a mess right now. :(

Southsider170 06-09-2021 02:37 PM

Re: How dire is this path report. Gleason 5+4
 
GS 5+4 is very serious and you do have a high volume of cancer, so there is definitely a high degree of negativity.

But on the positive side, your PSA score is only moderately elevated so there would seem to be a chance its still confined to the prostate. In addition, your cancer is an "adenocarcinoma" and that is a more typical, garden variety of PC that is very common.

Due to your high risk situation, you'll definitely want to go to a top cancer center.

IADT3since2000 06-09-2021 03:57 PM

Re: How dire is this path report. Gleason 5+4
 
Hi again John. You posted:

[QUOTE=john_ct1;5511179]Well guys things just keep getting worse for me! I had a CT and Bone scan this morning. Bone scan was negative but the CT scan showed an enlarged pelvic lymph node measuring 3 cm x 2 cm... "Neoplastic etiology is suspected".

So it looks like cancer has gotten out. I'm waiting for a call from my urologist. Does this rule out surgery and only leave RT, Hormones and/or chemo? I'm quite a mess right now. :([/QUOTE]

I'm sorry you got this disturbing news, but there is a silver lining.

Yes and no on the surgery. [I]IF[/I] that node is the [I]only[/I] metastatic site for cancer, then you could have a radical prostatectomy plus either radiation or surgery to eliminate the cancer in the node. Surgery might still be a viable option if there are a few more micro mets that could also be eliminated.

However, as neither the traditional technetium99 bone scan nor the CT scan are very sensitive, they very well may have missed additional tumors that are smaller - still relatively large, perhaps - than what they can pick up. The very good news is that you do not have widespread bone or soft tissue mets that can be detected by these conventional scans. :cool:

As an informed layman, but still a layman, I would expect your doctor to want a definitive scan such as a Ga68 PSMA PET scan, an Axumin scan, one of the C-11 scans, or the new PyL scan to check for very small bone and soft tissue mets.

Also, modern radiation is at least as effective as surgery and has an excellent side effect profile.

Is the detected spot within the pelvis where radiation could wipe it out?

….Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

john_ct1 06-09-2021 04:27 PM

Re: How dire is this path report. Gleason 5+4
 
Jim,

The node in question is in the pelvis. Since no matter what I would have to have radiation treatments then what about using radiation is the primary treatment and avoid all the trauma of a RP, especially when outcomes are fairly similar?

Thanks.

-John

DjinTonic 06-09-2021 05:18 PM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=john_ct1;5511184]Jim,

The node in question is in the pelvis. Since no matter what I would have to have radiation treatments then what about using radiation is the primary treatment and avoid all the trauma of a RP, especially when outcomes are fairly similar?

Thanks.

-John[/QUOTE]

Yes, you certainly could. (The RT regimes are different for RT when it is the primary treatment and when it is adjuvant after RP. The length of ADT may also differ.)

If this were me, I would want a consul at a prostate center of excellence. There are quite a few around the country. An advanced scan could contribute much information about where any other mets are located. Given the severity of your status, I would want a consul that was tailored to me, rather than have to rely on general statistics. A center of excellence could give you their results with various treatment for men with similar diagnostic workups.

Djin

IADT3since2000 06-09-2021 06:00 PM

Re: How dire is this path report. Gleason 5+4
 
Hi John. You wrote:[QUOTE=john_ct1;5511184]Jim,

The node in question is in the pelvis. Since no matter what I would have to have radiation treatments then what about using radiation is the primary treatment and avoid all the trauma of a RP, especially when outcomes are fairly similar?

Thanks.

-John[/QUOTE]

That's good news indeed!

I see it the same way Djin does, and you are seeing your situation the same way that I am.

Radiation technology has advanced since my treatment in 2013 when I had a dose to the pelvis as well as to the prostate. The big change is that SBRT, given over a period from 5 to 10 days, is the typical way cancer is knocked out in the prostate, whereas I, in contrast had 39 sessions over a period of 8 weeks. Those 39 sessions delivered doses of 2 Gy per day to the prostate for the full 39 days; during the first 23 sessions, an additional dose of 2 Gy per day was delivered to the pelvis, totaling 46 Gy. I could tell the difference on the 24th day when I no longer had the extra dose to the pelvis: the radiation machine took a shorter time to deliver the doses. That was the only difference I noticed. I've forgotten the time it took, maybe about 15 minutes on the table at the start including set-up and positioning, and I was off the table several minutes earlier from the 24th day and onward. These days, with a Gleason 5+4=9 cancer, you would probably be getting a combo of ADT plus seed implants plus IMRT or SBRT. If you decide on that route, or on any radiation route with ADT, it would be wise to discuss the value of being on metformin.

Also, while the outcomes for surgery and radiation plus ADT are roughly similar, it looks to me like you get a substantial edge with radiation for high risk cases - it's not just a few percentage points higher recurrence rates with surgery, it's more in the range of 10 to 20 points depending on what studies you look at. Logically it makes sense as radiation can reach places that surgery cannot and can knock out cancer in the pelvis that cannot even be seen with scans. That said, surgery does cure a hefty percentage of men with high-risk prostate cancer.

.....Jim

[SIZE="1"]
- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

john_ct1 06-09-2021 06:08 PM

Re: How dire is this path report. Gleason 5+4
 
Next week I'm consulting with the head of Urology at UPENN in Phildalphia.
Thx -John
PS. Just got off the phone with my urologist. He said I'm no longer a candidate for surgery. I'm meeting with a radiation oncologist on Friday.

DjinTonic 06-09-2021 06:31 PM

Re: How dire is this path report. Gleason 5+4
 
[b]Stereotactic pelvic radiotherapy with HDR boost for dose escalation in intermediate and high-risk prostate cancer (SPARE): efficacy, toxicity and quality of life[/b] (2021)

https://www.sciencedirect.com/science/article/pii/S0167814021065671?casa_token=Z-5fIVQCvMEAAAAA:Bx_Kd--CJbpYCtC4Vn0ICMrE-GiVLtyU8-6RqwcyZKMy35osoHnOQiBfotOad1ThPo4GbGGR

Djin

Terry G 06-10-2021 02:12 PM

Re: How dire is this path report. Gleason 5+4
 
Hi John, Although the scan result was not the news you hoped for it’s better to have that information before selecting a treatment plan. The information in this thread will most likely prove valuable not only to yourself but to others struggling with a treatment decision.

I have a friend who is just finishing up two years of ADT following surgery for Gleason 9. His urology team thought his cancer was fully contained and that surgery was his best option. Following the surgery his PSA failed to drop to undetectable and he’s since had EBRT and ADT. Since you expressed concern for ADT I thought I’d pass on his comments and experience.

“I had 39 radiation treatments and I really didn’t experience any severe side effects. The hormone I have been getting is called “Eligard”. There are some side effects with this but other than the hot flashes and somewhat of a lack of energy, I really havn’t had any problems. I know some guys claim that the ADT is turning them into a women but I’m convinced that the key to avoiding that is to push thru the lack of energy and stay as active as you possibly can. It has worked for me. My doctor said there is a prescription drug that might help with the hot flashes but I declined.I didn’t want to take anything if I could get by without it so I just grin and bear it. He also said some people find an all natural supplement called “Black Cohosh” helps but I havn’t used that either. Working out almost every day and trying to keep a positive attitude is what has worked for me.”

My RO says he definitely sees that patients that remain active during and following RT clearly do better than those that are not active. My friend and I are both active at our YMCA and regularly attend spinning (cycling) classes as well as other light exercises. John…if you don’t already have a gym membership you might consider getting one. The best way to combat the side effects of ADT is to be as active as possible.

john_ct1 06-10-2021 02:40 PM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=Terry G;5511350]Hi John, Although the scan result was not the news you hoped for it’s better to have that information before selecting a treatment plan. The information in this thread will most likely prove valuable not only to yourself but to others struggling with a treatment decision.

I have a friend who is just finishing up two years of ADT following surgery for Gleason 9. His urology team thought his cancer was fully contained and that surgery was his best option. Following the surgery his PSA failed to drop to undetectable and he’s since had EBRT and ADT. Since you expressed concern for ADT I thought I’d pass on his comments and experience.

“I had 39 radiation treatments and I really didn’t experience any severe side effects. The hormone I have been getting is called “Eligard”. There are some side effects with this but other than the hot flashes and somewhat of a lack of energy, I really havn’t had any problems. I know some guys claim that the ADT is turning them into a women but I’m convinced that the key to avoiding that is to push thru the lack of energy and stay as active as you possibly can. It has worked for me. My doctor said there is a prescription drug that might help with the hot flashes but I declined.I didn’t want to take anything if I could get by without it so I just grin and bear it. He also said some people find an all natural supplement called “Black Cohosh” helps but I havn’t used that either. Working out almost every day and trying to keep a positive attitude is what has worked for me.”

My RO says he definitely sees that patients that remain active during and following RT clearly do better than those that are not active. My friend and I are both active at our YMCA and regularly attend spinning (cycling) classes as well as other light exercises. John…if you don’t already have a gym membership you might consider getting one. The best way to combat the side effects of ADT is to be as active as possible.[/QUOTE]

Thanks Terry for the encouraging feedback. My plan is to continue rigorous weight training during treatment and beyond, along with plenty of cardio. Fortunately my apartment has a nice gym and trails. My biggest struggle is my treatment resistant anxiety.... not good.

-John

IADT3since2000 06-11-2021 07:42 AM

Re: How dire is this path report. Gleason 5+4
 
Good morning John. You wrote: [QUOTE=john_ct1;5511187]Next week I'm consulting with the head of Urology at UPENN in Phildalphia.
Thx -John
PS. Just got off the phone with my urologist. He said I'm no longer a candidate for surgery. I'm meeting with a radiation oncologist on Friday.[/QUOTE]

I too heard almost exactly those words, only slightly more blunt: "You're not a candidate for surgery!" I was devastated, as was my wife. That was back in late 1999, and the obvious options beyond surgery were not good back then. Fortunately, I found a good path.

As you probably now know, modern radiation with imaging plus supportive technologies is at least as good as surgery at eliminating the cancer and has a good profile of side effects. You have a good shot at beating this thing. Keep your spirits up!

….Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

IADT3since2000 06-11-2021 07:55 AM

Re: How dire is this path report. Gleason 5+4
 
[QUOTE=DjinTonic;5511166]Jim, "persistent PSA" occurs when a the [i]post-RP PSA[/i] is detectable on the standard PSA test (i.e. the results are not <0.1) after an adequate waiting period, of course....[/QUOTE]

Thanks Djin. I am accustomed to thinking in terms of ultrasensitive PSA test results and trends and had not noticed the term "persistent PSA", which I am now already noticing in frequent use.

For those of us curious about prostate cancer and its treatment, learning is constant.

Jim

john_ct1 06-11-2021 08:06 AM

Re: How dire is this path report. Gleason 5+4
 
Thanks Jim (I love your feedback and wisdom!). Just met with an amazing Radiation Oncologist. With my lymph node involvement treatment is pretty cut and dry.. IMRT Radiation (2 months) + ADT (up to 2 years). The RO was very encouraging. He expects me to tolerate therapy very well (being young and very healthy is a big plus) and a cure/remission is quite possible. I was also very impressed with the staff and facility there. They only treat PCa at this facility. I chatted with a patient in the waiting room who's halfway through his treatments... he had glowing comments about his treatment there and the docs/staff. Next step in starting Casodex and SpaceOar/Markers. Also scheduled for a 2nd opinion next week with the top guy at UPENN for peace of mind.

IADT3since2000 06-11-2021 08:32 AM

Re: How dire is this path report. Gleason 5+4
 
John, regarding exercise, you wrote:[QUOTE=john_ct1;5511163]Jim,

"However, effective use of known countermeasures will substantially reduce or eliminate most side effects, making ADT quite tolerable for many of us, including me."

What countermeasures did you employ? I keep hearing that consistent and intense weight training is very effective.[/QUOTE]

You have probably noticed the master thread I started about side effects of ADT and countermeasures for those effects. When I started to respond to your question earlier, I realized that there was a lot of ground to cover and that the question was of general interest, so I decided a new thread was best.

However, regarding your specific question about weight training, I fully agree with Terry and his friend: being physically active is [I]very[/I] important (if possible) in my opinion. It helps with many potential side effects, including energy, muscle strength, fatigue, weight gain, metabolic syndrome, and depression; that's just what immediately comes to mind; I hope to do a more comprehensive look someday under the umbrella of the new thread on countermeasures and side effects. As a very important side benefit, an exercise program is also heart healthy, and cardiovascular disease is an even greater threat than prostate cancer for most of us.

I'm speaking from experience. I was active throughout my fourteen years on intermittent ADT. My main exercise prior to that was racewalking, and I kept that up, though at lower speeds - still a lot faster than most people are able to walk. It's a great aerobic and weight-bearing exercise, but walking at a slower, even a normal or slow pace is also very good for maintaining fitness, and there's research to prove it.

Back at the start for me, around early 2000 there was not a great appreciation for weight/resistance exercise for prostate cancer patients, but that soon changed as research accumulated. Now it is seen as important. If you are up to it, intense weight/resistance exercise would probably be best, but any such exercise would probably be good.

It is true that ADT with drugs that reduce testosterone (not all ADT drugs do) will reduce muscle mass and thereby decrease strength unless countered. However, my own experience proved that it can be countered. I did not know this for my first round of 31 months of ADT with Lupron, and I lost some muscle mass and strength. But in my second or third round, having learned about the importance of weight work, I deliberately tried to maintain my strength, mainly by regular gym work - not frequent, but once or twice a week with workouts of one to two hours. I logged the weight I could lift (mostly resistance machines) with a regular routine. I was actually able to [I]increase the total weight somewhat while on ADT![/I] Not all of us will be able to do that, either because we are not up to the exercise physically (which I appreciate ever more as I approach my 78th birthday), or because we just lack the motivation. But if you are up to it, I'm convinced you will find the effort rewarding.

To me, the best program focuses on both aerobic and weight/resistance exercise but also includes elements for flexibility and balance.

Dr. Stacey A. Kenfield, ScD, presented on exercise for prostate cancer patients at the recent 2021 Patient Conference for Prostate Cancer by the UCSF and California Prostate Cancer Coalition. Her talk will be online, hopefully soon. She made many important points.

Good luck with your program.

….Jim

[SIZE="1"]- - - - - - - - - - - - - - - - - - - - - - - -
21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.[/SIZE]

Terry G 06-11-2021 08:41 AM

Re: How dire is this path report. Gleason 5+4
 
The best can make a huge difference. The ones specializing in PCa generally keep great data and regularly meet with their peers to stay at the top of their game. Terry

john_ct1 06-11-2021 08:58 AM

Re: How dire is this path report. Gleason 5+4
 
Thanks Jim. It's surprising to me that one can actually build muscle without testosterone and other androgens. Yes, the other health benefits of exercise are huge... you can add delaying cognitive decline/dementia to your list. Interesting to think that dramatic lifestyle changes, that a conscientious PCa patient would not have otherwise made, might be adding to their overall longevity/quality of life w/o PCa.

"The most potent drugs we have are food and exercise" -Dr. Peter Attia.

-John

john_ct1 06-18-2021 09:59 AM

Re: How dire is this path report. Gleason 5+4
 
I just meet with the top Urologist at UPENN (Dr. Guzzo) for a 2nd opinion. He recommend an RP with extensive lymph node removal. My regular Urologist discounted surgery and recommend Radiation plus ADT (actully got my 1st ATP shot on Wednesday - Firmagon). The UPENN doc said surgery will give me the best flexibility going forward. Interestingly Dr. Guzzo trained my current urologist. Guzzo has done many 1000s of RARPs. I'm leaning towards surgery. I wasn't expecting this recommendation given that a lymph is already evolved.

-John


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