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Radiation wrong answer?

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Posted 11/11/2016 5:14 AM (GMT 0)
Hey,
Took a few weeks off from reading any posts, stuff on my mind and all. If you have read any of my earlier posts I have been stressed over incontinence. Happy to say I am down to 1 pad a day. Only time worse is caffeine or too tired.

Anyways, to my question; I have started Lupron and was planning to add radiation but both my surgeon and my urologist expressed negative opinions, both pointing out there is no target to hit, the horse has already left the barn.

With lymph nodes positive both said a systemic approach better for me. Given my preference towards quality of life (continence) any radiation adds risk for getting worse incontinence, with no guarantee of it helping. If it has moved farther, again radiation would not help.

Can anybody speak to this issue?

Thanks again, and I think we should have found a better club to join, like maybe a fishing club!
Posted 11/11/2016 1:59 PM (GMT 0)

Tekton said...
Anyways, to my question; I have started Lupron and was planning to add radiation but both my surgeon and my urologist expressed negative opinions, both pointing out there is no target to hit, the horse has already left the barn.

With lymph nodes positive both said a systemic approach better for me. Given my preference towards quality of life (continence) any radiation adds risk for getting worse incontinence, with no guarantee of it helping. If it has moved farther, again radiation would not help.

I would seek second opinions to include a Radiation Oncologist. Also, I would want an advance scan Mayo's Choline or 68 Ga PSMA to see if cancer has left regional pelvic area. If not radiation may be a cure, but you may want to wait until return to continence.

If out of the regional area then radiation would not be curative.

Bobby Mac
Posted 11/11/2016 8:31 PM (GMT 0)
Hi Bobby Mac,

Thanks for answering.
My medical oncologist referred me to my radiation oncologist so I could have another view on this. After meeting with RO we discussed most aggressive approach to take. After pressing to be sure i wanted to be aggressive we talked over the process.
One issue he wanted me to understand was that there have been no studies done that fit my diagnosis. A study was tried once but cancelled because they could not find enough patients to run it. I know my case is odd, a somewhat uncommon one.

He expressed reality that the challenge was to both kill cancer cells in pelvic region, bladder neck but not lose continence.

I will look into scans you suggested, can't hurt to try and have them done.

Both my RO and MO are with Seattle Cancer Care Alliance and work out of University of Washington.

Thanks again,
Steve
Posted 11/11/2016 10:51 PM (GMT 0)
Hi Tekton

It's interesting how close your stats are to my husband's. Although he does not have ductal that we know of.

He had radiation almost a year ago and has had no incontinence. But since your psa is under control and even falling, this may be a good time to wait until full continence.

Regarding using the PSMA scans, the way I understand it they would pick anything up with your PSA being as low as it is. Also I wonder if your insurance would cover.

Best of luck to you!
Posted 11/12/2016 3:47 AM (GMT 0)
Ok .as you know no two cases of PC are the same. After Lupron for a year went to MD Anderson. They suggested IMRT not that it would be curative but it may give me local control. It is only a prayer that that I spent 45 day under the True Beam Machine. They say that their is no indicator that it worked other than the PSA test or the pain you may have in your body. I deal with urgency of urinary and rectal issues but to the best I have some control over it. All the decisions are yours as you follow the forum and the information it has. I don't know what my next step will be as I grow with the issue that gave each member success or failures in its fight with CANCER. Will I go on chemo or other treatment I do not know. It is the forum which will shed the light on treatment options.
Posted 11/12/2016 10:12 PM (GMT 0)
With your PSA now at 0.026, I don't think any of the new expensive scans will be able to find anything..The Lupron is doing it's job suppressing the cancer to the point it will be very difficult locate with scans...I should add, sometimes the very aggressive grade 4 and grade 5 cancer cells become so differentiated they stop producing PSA so that tool is no longer effective at judging cancer progression..The high sensitivity scans can still spot them..
Posted 11/12/2016 11:26 PM (GMT 0)
Advanced PET scans are useless for you, and would cost a lot. The Lupron you're taking will give you time to let tissues heal. Some recent evidence is showing that taking longer to heal before the start of salvage radiation may be beneficial.

I agree that it's a hard decision. Your ductal PC (which explains your initial low PSA), seminal vesicle invasion and LN invasion all increase the risk that radiation will not be beneficial. Your RO is right that there is very little data to rely upon in cases like yours. What was his best guess that radiation might be successful? I'd guess something like a 25%-50% chance of remaining progression-free for 5 years if you have radiation.

If you do decide to go for the cure, I think it's very important to use high doses of radiation - perhaps as high as 72 Gy- 76 Gy, and at least a couple of years of Lupron following. I wouldn't rule out chemo with it either, although I don't know which kinds of chemo are most effective against ductal. Perhaps get a consult with Celestia Higano at UW Seattle - if anyone has experience treating ductal, it would be her.
Posted 11/14/2016 7:01 AM (GMT 0)
I want to say thank you to every one who has replied, I am hearing what I need to hear, and learning to hear what I may not want to hear. I am amazed at everyones knowledge of options. In the end all decisions are mine (as often said in this club of ours) I am always impressed with TA's depth of knowledge about the path we are on. Thank you! by the way, RO did not give exact % answer but got feeling low % most likely.

Just had conversation with older sister who has been studying up on G9 with low PSA. She and I talked about QOL vs Length of life, not easy for her to hear but understands QOL being my preference. Besides, my plan is to win my fight against the playground bully simply because I have a better attitude than he does and I will PEE when I want to where I want to.

Again, Thank you to all for your support.

... one more, I had 4 tattoos done right after DX. Two were from my favorite book, the other two more philosophical...Left arm says "Winter is coming" Right arm says "What would Dad do" Going to add to left arm "Gleason 9" above and "PSA 2.2" below existing tattoo. As I told my Urologist "that is who I am. I will always be that and I am proud to be here, dumb as that sounds". Win or lose all of my Doctors knowledge will grow from my experience.

Can't wait to go fishing,
Steve
Posted 11/14/2016 12:37 PM (GMT 0)

TA said...
Advanced PET scans are useless for you, and would cost a lot.

Allen, not sure I agree with you since the 68 Ga PSMA, from what I have read, will find uptake even while on HT. Not sure about the Mayo's Choline?

So why wouldn't Tekton want to rule out distant metastasis?

Bobby Mac
Posted 11/14/2016 6:12 PM (GMT 0)
Bobby Mac-

Because his PSA is only 0.026 and has never been higher than 0.049 since his surgery. There aren't any kind of PET scans that I am aware of that can detect metastases when PSA is that low. In fact, the lowest PSA I've ever seen evaluated with a PSMA scan was the 0.2-0.5 range, and it was able to detect mets in about half the cases then. A PET scan can sometimes detect bone mets while on HT but only if PSA is high enough. The other reason is his ductal carcinoma -- I am not aware that it exhibits PSMA at all.

It's not that he doesn't want to rule out distant mets, it's that there is no known technology that would allow for that. Your case was different because your PSA was 2.6 when you had your scan. Ga-68-PSMA PET/CT detects mets in 86%-97% of men with PSA over 2.0.
Posted 11/14/2016 11:12 PM (GMT 0)
Allen -

Thanks, I see that - but in reading the below I am a little confused.

"Patients with an ADT at the time of 68Ga-PSMA-ligand PET/CT more frequently showed a positive PET scan compared to patients without such treatment. One explanation for this result could be that patients with advanced disease are more often referred to ADT. However, this theory needs to be investigated in more detail as many cases exist in which ADT is started at low PSA values. We believe that the time to start ADT depends on many variables such as patients’ demands, preferences/experience of physicians, PSA DT, etc. In addition, ADT usually leads to a reduction of PSA levels and can also reduce the tumour size [33, 34]. Both have the potential to negatively influence the detection rate in imaging modalities. Another explanation for our findings could be that the PSMA expression is apparently differentially regulated by androgens. In previous preclinical studies, PSMA expression was downregulated by androgen therapy and upregulated by antiandrogen therapy [35–37]. This counterintuitive behaviour is not yet fully understood and more studies are eagerly awaited to investigate the influence of ADT on both diagnosis and therapy with PSMA ligands."

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4315487/

Bobby Mac
Posted 11/15/2016 2:17 AM (GMT 0)
The biomechanics of PSMA expression are not well understood. Perhaps one of the half dozen or so other PET ligands in clinical trials now will be more specific and less influenced by HT. Casodex in advanced cases can actually stimulate the androgen receptor - perhaps it plays a similar agonistic role with PSMA.
Posted 11/15/2016 2:33 AM (GMT 0)
Bobby Mac and Tall Allen,

You guy's are way over my head but your conversation is awesome. Thank you. Some of it is actually sinking into my sometimes slow brain.
I see my MO in about 4 weeks, I may have different questions for him than I thought.

By the way, looked into seeing Dr. Higano, she is booking for February at this point and calendar is not available yet to schedule.I can't even schedule with her without my MO's OK and her OK they are that closely connected.
I believe my MO would be discussing case with her if needed just because they are in / on same team at UW.

Thanks again.
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