Newby with GS 10 but PSA 3.16

Hi Marv.

Ionizing Radiation, no matter how administered, kills the cancer cells in three basic ways. First, the actual ionizing action of the radiation will physically destroy some cells when the radiation is administered. Second, most cells will suffer damage to their genome (DNA) by the free radicals produced by the ionizing radiation that is irreversible and prevents the cell from splitting. The cancer cells can not repair their DNA in the way many healthy cells can. thus, after some time, often months or years, the damaged cancer cells commit programmed cell death (apoptosis). Third, is the newly observed Radiation Induced Bystander Effect (RIBE). This is where similar cancer cells adjacent to or even distant from the radiated cells react in the same way as the radiated cells and many will die, even though they weren’t directly radiated.

In most cancers, the slow and low method of delivering many low doses (fractions) over an extended period of time is most effective. PCa is different. Years ago it was observed that PCa cells actually are more damaged by shorter periods of higher doses of radiation. This is called Hypo-fraction radiation. This is how HDR brachytherapy got started. Then some 20 years later SBRT used the same theory to develop hypo-fractionated external beam radiation therapy. In SBRT you get the same biological dose in 5 or 6 fractions (procedures) as you would in about 45 standard fraction procedures from IMRT/IGRT. In HDR brachytherapy you get the same biological dose in one or two procedures lasting 15 minutes each as you would from permanent seeds over a 6-9 month period, depending on the type of the seed.

Low dose permanent seeds are either Iodine 125 or Palladium 103. Each have a different half life and effect how long the radiation is effective (6-9 months). HDR uses mainly Iridium 192, but recently Cobalt 60 has also come into play. These are far more powerful emitters than the isotopes used in low dose. Thus you receive all the dose in minutes rather than months. This hypo-fraction method has proven to be a more effective method of treating PCa. The reason the HDR catheters are closed at the end in the body is to prevent the radiation pellet from accidentally remaining in the body. The HDR pellet must be removed due to the very high amount of radiation being emitted.

If you would like, I can help you arrange a consult with the clinic where I was treated so you can learn more about HDR brachytherapy. And our door is always open.

Mumbo said...
I might disagree on the equipment importance. It is very easy for cancer centers to fall behind the technology curve given the high cost of updating radiation machines (> $1mil). The newer machines are quite amazing and capable of very accurate treatments. A great doctor on obsolete equipment would not be my first choice.

I get uncomfortable when patients who never operated, studied, or have any experience with the machines used since IMRT was created , make statement like that. Gives newcomers unneeded worry about techno babble. The physical layer hasn't changed that much, the physics is the physics. What has changed is the firmware that controls everything. All major RT departments are under contract with the machine manufacturers to keep everything up to date. Now if you go to JoeBobs Vet clinic that's on you. A bad Dr on the latests and greatest, is far worse than a great Dr and team on an up to date older machine.

Hi, again, Granndpamarv from Mrs. GL 9, 3.38 aka Spouse21.

I have some updates on a visit to our medical onc yesterday at Mass General. Despite a low PSA and with totally normal Alkaline Phosphatase and calcium levels that are supposed to align with bone mets, my husband's bone scans from last week indicate many, many new mets since his scans about 15 months ago when he just had a few.

This was awful news. He will be going on chemo in October. The onc immediately ordered the Guardant360 genetic test to see what's going on since blood work, PSA, and scans don't align at all. I mention this because if we were starting over with the same high Gleason, low PSA scenario, we would've insisted on more frequent bone scans and getting the Guardant 360 test out of the gate. (It is $3000 out of pocket if you're not covered.) I will keep posting on your thread as new information comes in. Our onc at Mass General was pretty gobsmacked as were we. I'm adding my signature within this text since HW doesn't accommodate long signatures. Here it is:

Husband 70 yrs (74 now)
pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious
biopsy 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved
11/14: Lupron 33 mos
6/15: 9 wks IMRT
9/15: .14
1/16=.093
4/16=.079
11/16=.05
2/17-5/17=.05
11/17=.08
2/18 .20
4/18 0.98
6/18: 3-4 bone mets
7/18 3.29
8/18 9.87 Lupron re-started
Zytiga/Prednisone started 2/9/2019
2/28/19 PSA 4.02 (ALP=85; ALT-23; AST=30) 3 wks. post Zytiga start
4/11/19 PSA 1.80 (ALP=68; alt=22; AST=27)
6/14/19: PSA 1.26 (ALP=62; alt=85; AST=50) Zytiga 2-wk break
8/2/19: PSA 0.64 (ALP=57; alt=159; AST=92 (told to resume Zytiga)
8/16/19: PSA 0.64 (ALP=62; alt=173; AST=103 Bone and CT scans done
8/20/19 VISIT: Scans indicate intensity of old mets but many new ones in spine, ribs, pelvis
"Kidney, bladder and soft tissue uptake are within expected limits.") Chemo recommended

Post Edited (spouse21) : 8/21/2019 10:39:55 AM (GMT-6)

LC - I get uncomfortable when a doctor who has never had prostate surgery or radiation tells me how I am going to feel, otherwise I understand your point.

GPM prefers to have his extended RT in rural Maryland near where he lives thus he needs to vet his local RO (compared to G'town and JH) which in my mind includes a review of the equipment and method(s) proposed that the RO can fully explain to him. I know I had tons of questions once I got into RT that I wished I had asked previously even though I had my list for the consults before and after surgery. I also think the IGRT/IMRT process I went through was much more dependent on the technicians and the system set up than the specific RO. There were different RO's that approved the daily treatment after the scan and positioning so it sure seemed like a group effort to me. My RO was very good about answering any questions I had about almost anything in great depth but I had to ask the questions or just heard the standard speech from the nurses and RO. I just want GPM to feel that he asked all the appropriate questions so he is as comfortable as possible when making his decisions regarding treatment and locations.

Computer woes + cancer = misery alleviated by dinner out with your wife. I feel for you, Grandpamarv.

I'm not an RO (obviously), but I wonder why he would do IMRT as a monotherapy due to the cancer having escaped the capsule. If you have the combo brachy-IMRT treatment, it's not like you've eliminated IMRT. In my case, it was unclear if the cancer had escaped and I had the combo treatment. I'm curious as to the reasoning.

Back for a few minutes on borrowed computer away from where I normally check in. Still trying to recover from computer crash, appears I'll have to buy a new one. Losing all the links I've saved and info collected is a nightmare. Looking for ways to get stuff off hard drive of old computer. Do have some older stuff backed up but got a bit behind so don't have more recent stuff.

IMRT/IGRT described to us was as Mumbo described; higher dose to tumor, suspect tissue, lymph nodes and lower dose to adjacent organs at risk. Rad Onc is familiar with OARspace but doesn't recommend it in our case. He is concerned that it would displace malignant cells to where they would not get enough dose.

Next step is to get fiducial markers "installed", get detailed CT at local onco and stitch it to MRI and develop treatment plan. Have appointment tomorrow for first Lupron injection, waiting for call to schedule fiducial markers. Rad Onc said 4 to 8 weeks until begin rads.

Thanks for listening, info, and encouragement. Gotta get back to shopping for new computer.

GPM - If you get a new computer, pull the old hard drive from the deceased computer and try putting in an external USB case and accessing it with the new computer as a data drive. Sometimes the data is ok and the OS decided to take a nosedive thus nothing starts up, etc. Now if you have a newer solid state drive, it may get a little trickier. I have banged an old mechanical drive against a table and got it to work long enough to get data off of it. No guarantees but there are a few things you can try before you give up.

Hi again and thanks for suggestions, experience, etc.

Still on borrowed computer away from normal location, ordered new one which should be here next week. Don't have time now to go through all the messages in this thread so apologize if I don't reply to questions posed. Hope to get caught up next week.

First Lupron shot 8/27, "install" fiducials 9/13.

Hopkins called this morning to discuss addendum to their pathology report. Apparently they did some additional analyses on the biopsy tissue given the Gleason 10s. I don't know if they do this on all tissue they get or just for high Gleason. They did "Mismatch Repair (MMR) Immunohistochemical Analysis" and found "loss" for 4 of the antibodies analyzed for.

Antibody Tumor Status
MLH1 Intact
PMS2 Intact
MSH2 Loss
MSH6 Loss

Apparently the MSH2 and MSH6 defects are common with GS 10 tumors and are associated with other cancers (colon and uterine for two). Hopkins recommends I do genome counselling and testing. They would have the tumor tissue tested and a saliva sample to determine if I inherited the defect or if it originated with me.

Wondering if anyone else with high Gleasons has similar "antibody results".

Need to close.

Thanks again.



I may not have characterized the above correctly, still trying to get my head around it and crashed computer not helping at all.

grandpamarv said...

Had appointment with rad onc this afternoon. His recommendation was identical to Hopkins, IMRT/IGRT. Doesn't recommend brachy even though he does seeds. This is based on tumor having escaped the "capsule". They are now using a Varian Truebeam machine which was installed in the past month. He explained two alternatives, he recommends 8 weeks, 5 days a week as opposed to hypofractionated approach with higher dose over fewer sessions. He is concerned with hypo approach getting sufficient dose to all the targets without over dosing organs at risk (bladder, colon).

Next step is to get fiducial markers put in, pursuing appointment next week with urologist. He spent 90 minutes with us explaining the situation, his recommendations, their process for planning and executing the treatment.

Need close, promised wife we'd go to dinner.

Thanks for listening and all the input.

I had 28 session hypfractionated, no clue what machine other than big, the rapid arc machinery could have been pulled by donkey's in the next room . Setup every session took longer than treatment. After I received all of the bills I calculated every swing of the arc was $1400. Hope those donkeys were eating hand-grown by virgins, organic hay.
Once you fall into the rinse and repeat daily cycle of treatment it get boring fast, about midway is when the movie groundhog day feels like your life. Remember Empty bowels, almost full bladder timed right...Easy Peasy, you got this, good luck!

Marv,
You're jumping the gun on castration resistance. It has no application to you at this point.

I know you're likely anxious. Just follow through with your treatment one step at a time.

Good luck with your treatment!

Hi Mumbo

Thanks for reply, good to be back but still have lots to do to get back to normal with new computer.

Haven't received package from Hopkins to complete and begin genetic counselling/testing, hope it comes today.

I am concerned that given my low PSA but high Gleasons and missing MSH2 and MSH6 proteins that my cancer is mostly castration resistant, but doesn't give off PSA. Really bothers me to have to wait for mets to show up to start treatment that is better suited to deal with CR cancer cells that may already be in bones etc. Hopefully results of DNA testing of tumor tissue will provide better direction and justification (if appropriate) to not wait.