I need to make a decision on my next treatment step and would appreciate any suggestions (sorry for the long-winded post).
I'm 59 years old and was diagnosed with APC in Feb. of 2019 (mets to prostate, lymph nodes and spine, PSA 35 before starting treatment). I was on Zytiga/prednisone and Firmagon for approx. 1 year, 9 months (PSA went undetectable after 6 months). My MO recommended radiation to the prostate, but I decided against it. I took a break from Zytiga and Firmagon for 5 months, then resumed Zytiga when PSA increased to 0.23 (didn't resume Firmagon). Testosterone remained < 3. On Oct. 2021 my MO switched me from prednisone to dexamethasone, which did not seem to help, as PSA increased from 0.27 to 0.45 to 0.57 to 0.74 (as of 1/20/22). See my profile for more details.
I had a PSMA scan last November, which showed uptake in prostate and lymph nodes, but no spinal mets. Three weeks ago I started to have pain in my prostate (it feels like prostate pain, but I can't be sure). My MO suggested starting radiation to prostate immediately. I'm also considering LU177 treatment where available (I realize this is not FDA approved yet, and I don't think I would qualify anyway if it was). I got a second opinion at MSK in NYC which did not recommend radiation or LU177 since PSA was still low (however, I never expressed very high PSA anyway). I'm getting a bone scan and prostate MRI next week. Does anyone have any suggestions on what I should do next? I'm confused. My wife was also wondering if hyperthermia treatment would enhance radiation or LU177 treatment.
Thanks
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I got a second opinion about radiation after I was diagnosed and it wasn’t recommended because I couldn’t get it later when it was really needed. Do you mean get the debulking now?
Thank you TA. Does it matter that when I was first diagnosed (3 years ago), I had more than 4 distant spine metastases? They were very small. These small metastases did not show up on the PSMA scan I recently had in November. So would debulking still be a benefit at this time?
Unfortunately, once that many are detectable on a bone scan, it means that there are MANY more that are too small to be detectable. After 3 metastases, met-to-met spread becomes predominant over prostate-to-met spread so there is no point to treating the prostate. The uselessness of prostate treatment after that point was proven in two large clinical trials.
Thanks very much for the valuable information. I have a couple last questions. Does it make sense to do the radiation anyway to prevent urinary problems (as you said above) even though there is no oncological benefit? Would the radiation eliminate prostate pain which I am beginning to have?Thanks again TA
Maybe, but it might make it worse too. If the tumors are shutting off the urethra, they will swell from the radiation and you will need to be cathetered, maybe just temporarily. It couldn't hurt to talk to a radiation oncologist about palliative treatment. He will want an MRI to see where the larger tumors are. I think they use a lower dose for pain palliation.
TA is definitely the guy that will offer the best insight on this! But...
I'm trying to understand...
"because I couldn’t get it (Radiation) later when it was really needed"
I too believe what TA proposed that Early is always better than later. And NOW is early for later! Doing and Acting is better than not!
Was the impression given to you that you may only treat your cancer once? While it is true that the "same" tissue isn't re-radiated, as it wouldn't need to be, radiation delivery is so precise, nearby tissue that was missed earlier in diagnostics, and progresses therafter, certainly can be radiated later.
I understand the wish to forgo radiation and radical surgery and chose the drug path, but you had metastatic disease upon initial diagnosis and radical therapy may have helped preventing where you are now. So considering where you are now, and the future, wouldn't you want to radiate whatever is possible? Is this even a good option still? I understand metastatic disease usually presents systemic therapy... Just my mind thinking out loud. There is some controversy regarding treating mets if the number of locations is small, but certainly a worthy conversation. All paths should be open to discussion! Even if they're not considered the best option.
I always been very cognizant of treatment lines, and how they developed paths of treatment, based upon what is chosen first and in progression as well. The fact that once you chose a path a course is set to a certain extent, on possible future treatment. Meaning taking the low road first and saving the high road for later. There are times when having a certain therapy can exclude another one being used next, ie, you burn certain lines by choices made. You can't go back! Especially with regard to trial access. My long winded point is, you want to go onto LU-177 which is for very advanced cases, but is this the right setting, or best setting for you?
Many of us get predisposed to thinking what is best and second guess our oncology team. Not that being engaged isn't a bad thing, but I'll ask, or would ask what specific paths/treatment lines are available, and what benefit or result would be expected of each considering my condition. There are a lot of advantages and disadvantages to each. LU-177 isn't a slam dunk answer for everyone.
Ultimately, if you're now at MSK, you're in good hands there, in my opinion. I would await the results of the upcoming tests and then see what the MO offers while keeping an open mind. Prepare yourself in the interim with a boat load of questions regarding your given diagnosis, and prognosis, as to what paths forward are available, and discuss each in detail, ie, benefits, expectations, Morbidity (side effects) and Mortality (overall survival) etc... The great thing about being at MSK is access to trials as well, also asking if you're fit for any is worth the conversation as well.
Thank you for your informative response. I guess I was misled to believe (or did not understand) that the surrounding tissue could not be re-radiated if missed the first time. I will discuss with my MO the best next step after getting the results from the scans. Thanks very much Cooolone!
I am getting a good PSA response, after 3-4 months of Zytiga, and will be discussing with my MO in a few weeks about when he thinks we should add chemo... and I am expecting to do it before my first "vaca" from ADT.
But about the pain that you have... Like many, I have come to assume nearly ANY new pain I experience must be related to my cancer. So last year when I had some hip pain, I thought, yup, my mets are moving around (my ALP was very high at that point, too).
But of course I really don't KNOW if that pain was from mets, since I had no scans done. And when I had some off and on groin pain late last year, was it prostate related? I don't know, it resolved on its own... but I do think "oh, that's the cancer" should not always be my default assumption, even though that's where my mind goes.
So even in light of your upcoming MRI, perhaps also see your PCP or someone OTHER than your PC oncologist, describe the pain, and see if he/she agrees that it is in fact "prostate pain."
I’m glad you are having a good response from Zytiga. Keep up the good work. Chemo was discussed, but not recommended at this time. You are so right about believing every little pain is from the cancer! I had groin pain as well; the MRI showed a ligament/tendon tear. A numb foot turned out to be Morton’s Neuroma. Also, my body “creates” it’s own symptoms and pain just from anxiety alone. I have to learn how to eliminate negative thoughts. Easier said than done!
I was offered radiation (after chemo) to the prostate to help with urinating. My prostate was very large at diagnoses and I was taking medication to help with flow. I had metastatic disease to 6 spots on skeleton. After treatment I was urinating like a young man with no problems. I was able to stop taking the Flowmax.
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