After 7 years, and multiple PSMA scans, my husband had a FDG CT scan and it showed what they quoted as “several” metastasis In the lymphs In the para aortic area in abdomen.
One doc wants to biopsy to check if cancer DNA has changed from original pathology in 2017.
Another doc says… No to biopsy due to proximity to aorta…
Anyone else had this scenario? Also, anyone had radiation to lymphs with success?
He is on Firmagon & Zytiga…
Thank you!
What do you mean by " radiation to lymphs with success?" What do you mean by "success"? Low side effects? If so, I know a couple of guys who had them irradiated with no side effects. It did nothing to slow progression, though. But chemo with carboplatin slowed it down.
You might also investigate clinical trials using abemaciclib, rebociclib, or palbociclib.
I was hoping to hear it slowed down progression. 😩
Thanks for the reply!
Hello Jolley, My husband recently had a biochemical recurrence ,and a PSMA Pet Scan showed three psma avid nodes in the abdomen. They are sub centimeter and moderately intense in the para-aortic, retrocaval, and common iliac. He immediately went on Lupron/Zytiga/Pred (with an initial dose of Casodex to prevent flare). He is three weeks into radiation treating the extended pelvis area as well as an extension to those avid abdominal nodes. From the start, the nodes shrunk after two months of the ADT and after one week of radiation, they had shrunk even more. He is having 70 gy in 39 sessions. This is IMRT with IGRT (image guided). He is tolerating it well with the exception of some fatigue and radiation induced nausea held at bay with Zofran. He is being treated at Yale Smilow Cancer Center, and we took his case to Memorial Sloan Kettering for a second opinion. They concurred with our plan as the most reasonable treatment to halt progression. MSKCC also recommended he remain on his current course of ADT for 18 to 24 months. This differs from Yale, who recommend we stay on it until he fails eventually. We’ll cross that bridge and make decisions in two years concerning that. We are trying to stay positive and know we are doing all we can including hikes and cardio too for the side effects. Sloan Kettering termed him oligometastatic and low burden, and felt chemo would not be as effective at this stage, which I still wonder about. Please read my husband’s history if that helps. Also, you can reach out to me at any time.
Stephanie
Thank you for your detailed response!!!!
My husband’s PSA has been going up for Months…. While on ADT … plus, having 2 PSMA scans last year and one in January… all of which showed nothing! Our doc, Said we no longer treat by PSA, but now by scans! I have begged for months for another type scan… other than PSMA , and this is where the modes lit up in the para aortic area. I do NOT understand why our HIGHLY reputable oncologist Dr. Rahul Aggarwal at University of CA in SF, waited so long to do this scan. Very disappointing. Yet we trusted him explicitly!
He is now castrate resistant and has been for almost a year. He was put on a clinical trial one year ago of NUBEQA… and Lupron. His PSA continued to climb for these last several months! Thank goodness it did not show any metastasis in organs or bones!
We are waiting to hear next steps!
I worry about what will happen when my husband becomes castrate resistant. From my research, this is what I would do………..I would take down the PSMA avid nodes with radiation or surgery. (I inquired about surgery but was told it would be “wild” and not commonly done, yet it is common for abdominal spread in testicular, cervical and ovarian cancers.). I would want to remove as much tumor burden as possible to level the playing field and go from there. In tandem, I would inquire about BAT therapy to resensitiize rhe cancer to ADT if that is a possibility. I would also make sure to ask about the Carboplatin chemo that Tall Allen suggested. I have also heard about parp inhibitors in combination with Zytiga as being successful for nodal spread, but I have not studied it enough. Please keep me posted on how he is doing and what treatment you decide to do.
Stephanie
Thank you, Stephanie!!! My name is Marilyn!
We are also conferring with Dr. Gary Onik in Fort Lauderdale, FL. He has developed a most unique approach to treating PC which he used on himself. There’s just not much evidence of how successful it is. The treatment is Self-pay so not that many are eligible to try it! But, it’s definitely an interesting investigation!
My husband also has CDK12 mutation, so according to research this type does not respond well to PARP inhibitors, unfortunately.
Thanks so much!
I am surprised as I get treated at MSK also and my MO never recommend radiation to my LN Mets which have have them in the pelvic and abdomen also. Just curious though.
Hi Ahk1, our medical oncologist at Yale was against radiation, but we had a consult with a Yale Radiation Oncologist and a Hartford Radiation Oncologist, who both agreed that Salvage RT with extended field would be their recommendation. Since we did not yet have the medical Oncologist’s blessing, we met with a Sloan medical oncologist, in West Harrison, NY. He concurred that MSK would follow the same treatment plan we were on including ADT, and supported radiation due to the fact that ADT may not be able to wipe out the cancer from the lymph nodes completely. Please message me if you would like his name. Hoping for a good response from all of this treatment.
Stephanie
S
I wouldn't compromise safety in that remote hope. There is really no good evidence that it slows progression. That is especially true given that the cancer has mutated since it was previously detectable with a PSMA PET. When the cancer has the CDK12 mutation, genomic mutations to more virulent forms occur without constraint. Chemo with carboplatin and those experimental medicines I mentioned would be good options.
As I share, six years ago I chose an uncommon in US treatment, salvage extended pelvic lymph node dissection (ePLND) surgery over ADT/chemo. 6 of 31 removed lymph nodes were confirmed with cancer, including left para-aortic node. Pre ePLND usPSA 0.13; post ePLND nadir <0.010. I do not think in terms that I was/am cured. To date, no further evidence of disease. usPSA has been holding very low stable 0.03X range last two years.
Thank you Sooo much for this response!
I’m curious why you went with surgical LM removal over IMRT of the nodes. I’m in the same boat with positive nodes and my RO wants to radiate them. But I have a surgeon here in Florida who recommends removing them. Did you see a benefit to surgical desecration over radiation?
(First of two replies) As with my choice for RP, imaging was critical to my decisions; mpMRI (two) for RP and Ferrotran nanoparticle MRI for ePLND. IMO surgery has several ‘exclusive’ benefits. The immediate removal of tumor burden massively reduces the number of, and even better, all, the thriving cancer cells. A complete pathology of all the tissues is obtained, providing further insights. PSA testing can be done to very low levels; I rely on <0.010 as best indicator. Plus, radiation can still be done (the inverse seems more complicated). Specific to my choice of ePLND over radiation, the imaging indicated cancer may have spread as far as common iliac and para-aortic nodes. I came to understand these nodes could have been outside of the radiation field, leaving them intact to grow and spread. And, and not a small and, my objective since my diagnosis has been, if it comes to it, to defer ADT/chemo/CR as long as possible. So far, just over eight years since my RP, six since ePLND, no ADT/chemo.
Desecration, really? I first wondered if this was an unnoticed auto-change of dissection – seems unlikely. Desecrate \ 1: to violate the sanctity of: Profane 2: to treat irreverently or contemptuously often in a way that provokes outrage on the part of others. Question: Does the use of desecration confirm to Community Guidelines? 1) Kind, respectful, understanding 2) No attacks 3) From your own experiences.
There is a meanness in this group towards surgery, and disrespect to others is not uncommon. IMO, a real shame.
You might want to research BAT therapy, invented by Dr. Sam Denmeade at Johns Hopkins University. It works well on castrate-resistant men to reduce PCa. And, it's inexpensive. He's written a Patient's Guide to Bi-Polar Androgen Therapy (BAT) at:
Hi just to let you know that I have been fighting the beast for 29 years and am still going.. I have had most all the treatments.. Recently my PSA went up to 3 or so and they did a PSMA pet scan and found just 2 hot lymph nodes.. So I had my RO hit them with SBRT 5 sessions and my PSA immediately went down.. And by the 2nd month I was at 0,02 and it has stayed there now for 6 months.. Yeah.. My MO also had me stay on Zytiga and Prednisone.. So just hoping things will stay the same for a long time... i think I have that coming as I'm now over 80 now. Good Luck
No adt ? Just Zytiga?
Yes no Lupron.. I am totally against it.. But I did have an Orchiectomy back in 2019 Same results but no chemicals in my old body.. Good Luck
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