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Advice on treatments for G9

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Posted 3/16/2017 7:33 PM (GMT 0)
Recently diagnosed with G9 PCa.

PSA 39.4 02/07,
PSA 37.1 02/14,
PSA 28.0 02/22

12 cores of 14 scored G9 70%-100%, mostly 90% and 100%.
CT Scan = Negative.
Bone Scan = Negative.
MRI = There is evidence of spread of the cancer locally into the seminal vesicles (stage 3B) - there is no evidence of others areas of breech or spread, the lymph nodes look normal.
GA68PSMA PET = will be doing tomorrow to find possibly microscopic spread.

The first Kaiser team of Uro, RO and MO recommendation is HT (Lupron) for two years, Radiation 30 sessions of IMRT/IGRT six weeks into HT and followed by 6 Chemo (Taxotere) sessions 2 months after the radiation completion. I asked the RO about Brachythreapy and he feels that I will have double side effects getting the same result as IMRT alone. They also suggested Chemo based on G9 and high PSA. I understand the G9 part but I believe my PSA was elevated not only because PCa. I have Ankylosing Spondylitis which is in internal inflammation causing PSA fluctuation.

I spoke to another Kaiser Uro and his recommendation is "With aggressive prostate cancer, without evidence of distant spread, my recommendation would be robotic prostatectomy with extended pelvic lymph node removal with a high probability of needing additional radiation and hormone therapy. Taxotere chemotherapy could be considered given your high risk status although this would be similar to clinical trial approach with limited data on its benefit and some risk of side effects/complications/morbidity"

I will also see Dr. Litwin from UCLA. It would be interesting to see what he thinks.

So far, based on what I have read on this forum It look like the best treatment for high risk PCa is the combination of HT, Brachythreapy and IMRT.

I think at this point I need to talk to another RO.

What do you guys think about this treatment plan?
What's best for G9 in my situation based on your own experience, someone you know or research/studies?
Any recommendation on RO in LA/OC area in or outside Kaiser?
Posted 3/16/2017 8:09 PM (GMT 0)
I have gleason 9. PSA about 10. Bone scan suggests no spread.

After 4 consultations, I decided to go with SBRT / CyberKnife (5 sessions in 1 week) + hormone deprivation (2 months before SBRT followed by 6 months after.). I started the hormone deprivation 3 weeks ago.

The first consultation was with the head of urology at Columbia P&S. Usually people expect urologists who are surgeons to recommend prostatectomy. He recommended SBRT with no hormone deprivation. He sent me to 2 radiation oncologists. Winthrop & Columbia. One recommended: 2 months hormone deprivation, 9 weeks of IMRT radiation & then 2 more years of hormone deprivation. I went with the Winthrop recommendation. As far as I can tell from reviewing long term studies, the CyberKnife therapy has outcomes as good as the other treatments and has the big advantage of shorter treatments and fewer side effects.

The latest long term studies with CyberKnife shows that hormone deprivation does not improve outcomes for high risk. I decided to go with it anyway as a precaution. Also, the CyberKnife studies show biological failure seems correlated with high PSA (not me) and not with high Gleason.

You might want to read the thread I started.
www.healingwell.com/community/default.aspx?f=35&m=3783232

You will find references there to long term outcome studies.
Remember that the sample sizes in the long term studies for high risk patients (high Gleason & high PSA) are often very small (100 or so) and therefore less decisive. Most prostate cancer patients are not high risk.

I think that you will find that most of the treatments have similar outcomes. But, some of the treatments have more aggressive side effects. Remember also that with prostatectomy your sex life will change. Orgasm is usually still possible, but ejaculations disappear completely. Surgeons usually forget to tell you about the ejactulation issue. Hormone deprivation also usually has unhappy side effects: memory loss, weight gain, reduced sex life, etc. The longer the hormone deprivation, the more side effects. Most people seem to say that your body will recover from hormone deprivation in approximately the same time as you were on it.
Posted 3/16/2017 8:14 PM (GMT 0)
Hi Steve,
We are in the same area as you and only a week or two ahead of you in diagnosis. My husband's PSA is lower than yours, but it seems that most of the rest of his pathology is pretty similar (Gleason 9, clean bone scan and clean PET scan, MRI showed perineural invasion but no other evidence of metastasis).

We have decided that the triple play (HT, brachy and IMRT) is our best shot at a cure.

Regarding RO's to meet with: The brachytherapy will be done at UCLA with Dr. Jeffrey Demanes. We met with him and his team in Westwood and felt very much like "this is the guy who's going to save us". That's a one day (one long day, but one day) appointment up in Westwood.

As for the IMRT...we really liked Dr. Chris King at UCLA, but from where we live (South OC - Laguna Niguel), it's a HAUL...we met with a RO at Hoag (Kevin Lin), had high hopes, but were unimpressed with the whole meeting, unfortunately.

We got a strong recommendation to meet with Dr. Robert Ash at St Joe's in OC, and we're on his calendar in a couple weeks, hopeful that he will provide us with an option that doesn't require a nasty commute for 25 sessions.

I can't vouch for Ash yet - we haven't met with him, but those are some names you might be interested to check out.

My husband just had his PET scan on Monday, and started Casodex Monday night. A Lupron shot is scheduled for next week. My husband is older than you are, but you and I are about the same age (I'm 44) and we also have 3 kids at home. I think I put this on another one of your posts, but you're not the only one helping kids with homework and researching prostate cancer at the same time. Hang in there - some days I feel like we're just barely hanging in, but we're hanging...hope you are too.
Posted 3/16/2017 8:27 PM (GMT 0)
One other thing - Dr. Chris King at UCLA is not just an IMRT guy - he's a SBRT/Cyberknife expert and is actually currently running a clinical trial on Cyberknife for high risk guys. When we met with him, we thought my husband might be a candidate. Based on our whole case, he said he felt way more comfortable with the triple play. He said that my husband IS a candidate, but that he didn't think it was the best shot for our family (this doesn't mean it's a poor choice for anyone else...this was just his input for our case specifically).

He might be a good RO to meet with though to discuss not only IMRT but the possibility of SBRT instead of the brachy for your high dose radiation option. We really liked him and all of his office.
Posted 3/16/2017 8:39 PM (GMT 0)
Thank you RichardNY, following your thread as well.
WifeofPie, We're in Mission Viejo area. Thanks for the info.
Posted 3/16/2017 8:42 PM (GMT 0)
Hi AshK...very sorry you have to join us here, particularly our G9 club. But congrats on the negative scans, which is certainly a victory since it means you can go for a cure.

Just a few thoughts on what your initial docs said. As a G9 I also did the triple play and don't really have any SEs other than I don't urinate quite as well. But that's pretty minor and it's treatable with Flomax. (Which I actually rarely take since the symptoms are pretty mild.) But I do know that for some guys that already have urination issues, they do sometimes shy away from the brachy recommendation. (I also wonder if Kaiser offers brachytherapy. If they don't, that could account for the fact that they don't recommend it.)

As to the uro that recommended surgery, I would want to think twice about that given the "high probability" of needing follow-up radiation since then you'd be dealing with the SEs of both surgery and radiation. I'd certainly be tempted just to start with radiation if I were you. If you're going to UCLA, I would echo WifeofPie's advice and try and get in with Demanes (HDR brachy) and King (IMRT/SBRT) to discuss with them. (FYI, I had my brachy/IMRT combo at UCLA.)

Suggestions for chemo are pretty aggressive, but I do know G9s that have had it in conjunction with their treatment.

Good luck to you and let us know how we can help.
Posted 3/16/2017 8:59 PM (GMT 0)
There is an ongoing RCT that studies whether radical prostatectomy improves prostate-cancer specific survival in comparison with primary radiation treatment and hormonal treatment among patients diagnosed with locally advanced (T3) prostate cancer.

Surgery Versus Radiotherapy for Locally Advanced Prostate Cancer (SPCG-15)

Unfortunately it will take several years until we have an result but here is a quote from the study setup that might be relevant in the decision making.


"One potential advantage of adding prostatectomy to the treatment of LAPC is that removing the prostate enables a full pathological assessment of the tumor characteristics and thus a better estimation of the risk of recurrence. Surgical treatment could thus reduce the numbers needed to treat with chemotherapy and radiation, and thus improve quality of life after treatment. In addition, evidence indicate that residual cancer in the prostate occurs in 25% after radiation treatment (56)and surgical removal of the prostate may improve survival beyond what can be achieved by radiation and ADT. On the other hand, patients treated with surgery, radiation and hormones will experience side effects of all three treatment modalities and might fare better if radiotherapy plus hormones can provide oncological control without prior surgery."


Long-term ADT is not without adverse effects.
Posted 3/16/2017 9:23 PM (GMT 0)
Wife of a G9 chiming in:

My husband just completed nearly 2 years of primary treatment. As you'll read below, he did chemo, ADT and radiation.

His Onc is now allowing his Lupron to wear off to see how he does. In all honesty, based upon the fact that his PSA never got to undetectable and even doubled in 3 months while on Lupron; we are not expecting a full cure. What we are hopeful for is long bouts without ADT and a long time before reoccurence. We know this will probably be something that is a chronic condition and we are as ok with that as we can be.

Good luck to you!
Posted 3/16/2017 10:26 PM (GMT 0)
Hi Ash K - Welcome to our forum.

I've added you to the roster of the G9 Crew, in the oh-so-select 5+4 group. You can find the thread here, with links to lots of people's posts. It's a gathering place for those of us facing this diagnosis, to help one another with our somewhat unique concerns. We only have a few a year that join this chapter of our unwelcome little club. Usually less than half a dozen a year.

The Gleason 9 Crew -- Part 2, continued

Please ask questions, express concerns, vent, whine, whatever. We're here to help, and as you've already seen there are some rather knowledgeable people here. No place else I've found has such great folks that can readily converse on topics like this.

All the best as you make your decisions. Nothing is certain or sure.
Posted 3/17/2017 12:51 AM (GMT 0)
Welcome. That's a pretty serious diagnosis, but if it's still localized, the odds of a cure are good. Good luck on the PET scan.

BTW- Where are you getting the Ga-68-PSMA PET scan and how much are they charging you for it? I know that UCLA is offering it for recurrent PC, but I had not heard they were offering it for high risk too.

Here are a couple of recent articles you may want to look at:

/pcnrv.blogspot.com/2017/03/brachy-boost-gold-standard-for.html
/pcnrv.blogspot.com/2017/02/for-very-high-risk-patients-ebrt-bt-is.html

Dr King and Dr Demanes were my top two choices when I was deciding - I ultimately went with Dr King, and we still stay in touch. I think you would be well served to meet with both, and I'm sure each will encourage you to do that.
Posted 3/17/2017 3:59 AM (GMT 0)
Ash K,
With your young age I would encourage you to get some genetic testing. Our MO Dr. Rettig at UCLA recommended color.com who test for 30 most common mutations. It is a simple spit test you return vial mail. There are come clinical trials for BRCA1,2, ATM and the Chek2 which my husband has. Can't hurt to know and it just may alter your treatment. Some tests also use biopsy tissue. Tall Allen knows the skinny on who does the test other that color.com .You can also search this forum. I would also watch some of Dr. Eugene Kwon's youtube lectures...
Posted 3/17/2017 9:09 AM (GMT 0)

Tall Allen said...
Welcome. That's a pretty serious diagnosis, but if it's still localized, the odds of a cure are good. Good luck on the PET scan.

BTW- Where are you getting the Ga-68-PSMA PET scan and how much are they charging you for it? I know that UCLA is offering it for recurrent PC, but I had not heard they were offering it for high risk too.

Here are a couple of recent articles you may want to look at:

/pcnrv.blogspot.com/2017/03/brachy-boost-gold-standard-for.html
/pcnrv.blogspot.com/2017/02/for-very-high-risk-patients-ebrt-bt-is.html

Dr King and Dr Demanes were my top two choices when I was deciding - I ultimately went with Dr King, and we still stay in touch. I think you would be well served to meet with both, and I'm sure each will encourage you to do that.

Allen - in your articles you talks well about BT. But with cancer ingrowth into the seminal vesicles (T3b stage as with Ash K case), wouldn't the radiation dose to the bladder during brachytherapy be very high? Then only external radiation therapy may be preferable?
Posted 3/17/2017 1:36 PM (GMT 0)
Gremlin
The case for RP notwithstanding the need for SRT for gl9s which you quote is intriguing. It's the first time I've ever seen a rational for RP which is worth considering. If your goal is to try to kill the beast no matter what the side effects , RP knowing SRT will usually follow could make sense. One thing for certain is that after prostate is removed , urination is drastically improved ( after a bout of in continence ) and after pathology you know precisely the severity of your cancer in the gland and whether it's escaped. But the downsides of RP, mainly sexual, are brutal.
Bob
Posted 3/17/2017 5:31 PM (GMT 0)
Gemlin-

Because seminal vesicle invasion is such a dangerous risk factor, it becomes even more important to kill the cancer there, and dose escalation is the best tool we have for accomplishing that. There is always a trade-off between dose and side effects. With modern IGRT techniques, it becomes possible to avoid organs at risk, like the bladder, with very good accuracy. But even the most careful plan cannot avoid some dose entirely.

If you look at Table 1 in the following link, you will see that the risk urinary side effects is higher with the combination therapy:

/pcnrv.blogspot.com/2016/08/hdr-brachy-boost-and-monotherapy-for.html

It may turn out that a good solution is not to use EBRT only, but instead to use HDR-BT only. You can see in the following, that when HDR-BT was used as a monotherapy, late term urinary toxicity was very low while cure rates were very high:

www.redjournal.org/article/S0360-3016(12)00916-9/abstract

Similarly, Dr. King just reported excellent toxicity outcomes using SBRT as a monotherapy in high risk patients - no grade 3 toxicity at all so far:

meetinglibrary.asco.org/content/178299-197

SBRT monotherapy has an advantage over HDR-BT monotherapy in that the pelvic lymph nodes may be treated as well. But both of these monotherapies have to be considered experimental for now. Combination therapy has been around since 1984 (for LDR-BT) and 1986 (for HDR-BT) and is well-proven.
Posted 3/19/2017 5:31 PM (GMT 0)
I am G9 (see signature) and am currently on my 3rd of 4 cycles of Docetaxel. I wanted to do the triple play but I had urinary issues that if I would have Brachy I would have more than likely incurred much worse problems with bladder blockage ,infections ,etc. Both my Uro and R0 agreed I would be taking a big risk. So I felt I was left with IMRT +Ht only for G9.
Further study resulted in finding the NCCN recommendations for treatment for G9 -10 very high risk . One of the recommended treatments was as you know is HT+IMRT followed by 6 cycles of Docetaxel. I was offered 4 treatments of chemo and took it.
There are many things I had to consider and everyone is different. This has been my experience. That's all I can offer, but do know that there are some of us here that have taken the chemo route.
Best wishes....


The Artistic One - Mark

Also, wanted to say that there was no indication that any cancer had spread,but have been told that with G9 odds there could be micro-metastasized cells that aren't detectable. That's why I chose the chemo route.
Posted 3/19/2017 7:50 PM (GMT 0)
Thank you all.
Tall Allen, I got my GA68PSMA PET/CT scan at UCLA. They are offering it to high risks since last Dec and it costs $2650. They said most insurance would cover $1,595 of it which is the technical fee. The isotope is out of pocket. I got a CD of the scan immediately and will receive the report on Monday. Now I was looking at the images and found two spots on my bones which was easy to figure unlike lymph nodes. If I'm right and in fact those are bone metastasis then all high risk patients should get this scan since the spots are over 1cm in diameter and my Kaiser bone scan didn't catch them and again that's only the bone. Lymph are even more complicated. I will let you know what the report says tomorrow.
Posted 3/19/2017 8:24 PM (GMT 0)
Ash-

I'm sorry to hear that about the possible bone mets. There is a minimum intensity (standardized uptake value (SUV)) for a spot to be suspicious for cancer, and the CT would have to confirm bone overgrowth. But it is certainly not surprising, given your "very high risk" diagnosis.

The next question is what to do about it. There is a lot of interest in cytoreductive radiation or surgery in such cases. Early data analysis seems to show a benefit to radical treatment even when there are known distant metastases. There are clinical trials in the works that may prove the benefit. Meanwhile, you can talk to Dr. King about the possibility of cytoreductive SBRT treatment. If he is willing, it could be done in just 5 treatments that would include the prostate, the pelvic LNs and any of the discovered mets. An alternative approach would be prostatectomy plus ePLND.

/pcnrv.blogspot.com/2016/08/is-prostate-radiation-still-of-any.html
/pcnrv.blogspot.com/2016/08/is-prostate-specific-radiation-still-of.html

Since I wrote that, there is a trial at MD Anderson, but you would have to agree to be randomized:

/clinicaltrials.gov/ct2/show/study/NCT01751438
Posted 3/19/2017 8:52 PM (GMT 0)
Hi Ash K. I am just catching up and wanted to say welcome to HW and sorry you have to be, especially with such a high risk diagnosis. Thanks for the info on the UCLA price points for their scans. Good to know. I wish you the best of luck on your treatment journey. Take care. -JR
Posted 3/19/2017 10:26 PM (GMT 0)
Ash -

Sorry you need to be here.

I had the UCSF 68 Ga Scan in August 2016 - before I received the reports I viewed the CD on my computer and thought I saw uptake to a few bones.

I was relieved when the report did not mention any bone metastasis. However, it found Mets on the lymph nodes and prostate bed.

So it's possible there aren't any bone Mets?

Best wishes to you.

Boby Mac
Posted 3/20/2017 5:08 AM (GMT 0)
Ash
Welcome to the forum from a fellow G9 (5+4). I was also in my forties (46) when diagnosed.
From what I have experienced and from the people like me (G9 with mets, etc) that I have met that have responded well our approach has been to hit it hard and hit it often as I did with HT, chemo, surgery, radiation to get and stay ahead of it. For me specifically, that has probably extended my life. Unfortunately I've fallen behind again with more mets so going through more chemo.
Whatever you decide, go at it as if it's the best choice possible and work the program. Along with that, my advice would be to not forget that you still need to take care of you - your health, your fitness, your emotional and physical strength. And when you do and reach your milestones along the way don't forget to celebrate and or treat yourself. It's a long road, a marathon run at a snails pace. Good luck and stay in touch. This is a good group for information and feedback.
Take care,
Posted 3/20/2017 11:09 AM (GMT 0)

Gunner34 said...
...It's a long road, a marathon run at a snails pace....

Beautifully put, perfectly summarizes my mindset right now. Only someone who's already fighting this this could have such deep insight. Thanks for that!

I've never been very patient, and it's the slow, inexorable pace that makes me crazy. I feel like I'm living the steamroller scene from Austin Powers!

[Edit: I just thought of a command some computer languages have, "Do While". It executes some function while some other process is running. We need to have the ability to fight this disease as a secondary process, a subroutine, but the rest of our life is Do While. Let that subroutine run in the background, but don't give it any more processor bandwidth than it absolutely needs. Life. Do While....]
Posted 3/20/2017 6:28 PM (GMT 0)
Thank you again guys. I received my GA68PSMA PET report today and no signs of spread outside of prostate which is very unusual considering my prostate is entirely G9 cancer but nothing has escaped.
My Uro said it's a good new so I take it.
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