What to do?

Macro

Had prostate removed 4/24. 1 of 20 nodes showed evidence. PSA has gradually increased from .02 to .39 over the ensuing 18 months ( .02, .05, .10, .10, .20, .39). Had PET several weeks ago and found 1 small area in prostrate bed. Recommendation was that I go the Oncology route - MRI and CT scans to set up targeting….then 25 consecutive radiation "treatments" across 25 days. No ADT unless I want, then min 6 month course. I originally chose prostate remove so I could go the oncology route and now here I am….at the door step.

Question 1. Anyone have any thoughts or experience with homeopathic remedies? More than I person has suggested Soursop/Graviola and carefully administered bitter apricot seeds (3 seeds per day). Thought about finding a DO rather than a MD to gather thoughts….

Question 2. Clearly there are ramifications of oncology,,,,,yes, your gas mileage may vary but as a 67 YO who is otherwise in excellent health, the side effects give me pause…..during and after the treatment. I really have no incontinence issues today nor have I had for the last 15 months….the thought of collateral damage and a reduced quality of Life from bladder and rectal issues, collateral cancer issues from the radiation etc. are not to be taken lightly (by me). Once you go down this path, there's really no going back!

The oncologist is pushing to get this train on the tracks with treatment starting next month (January) - and its easy to simply believe what they say but knowledge is power and the more I know the better decisions I can make……anything here is good info to know…there are others that have walked this path before me and others that will walk it after me…….share what you got and think please.

Clevelandguy

Hi,

To answer question 1, I don’t know of any multiple proven data studies that show soursop will reduce or eliminate your cancer. A lot of youtube and facebook video clips say it works but will you risk your cancer on it? Apricot seeds contains a compound that turns into cyanide inside your body, not for me.

Question 2, Sound like radiation is the most proven way to go since surgery is out of the question. If you go traditional X-ray based treatment I would want the protection gel between your bladder/rectum to protect them from the radiation they will receive. But since your Prostate has been removed I would ask your Oncologist about that. One other method is Proton treatment, which delivers a fixed length beam to the cancer and not beyond where the Xray beam will go past the cancer and hit other tissue. From what I understand some of the new ADT drugs have less side effects than Lupron, which has been on the market for a while. I would do your homework 1st and schedule the procedure of your choice second. Like you said once you pull the plug, there is no going back. A second opinion from a second doctor/hospital network might not be a bad idea. Good luck

Dave 3+4

Josephg

I agree with Dave above. If there were proven homeopathic remedies that consistently worked, every new prostate cancer (PCa) patient would be doing them, and they are not. Just forget about that as a potential option, as it is not a realistic option in my non-professional medical opinion.

It appears that they are recommending IMRT radiation (low dosage, multiple sessions), which has long been the standard practice for treating the prostate bed. I've been through it, and I did not consider it to be a big deal. Growing fatigue as the sessions progress was the most prominent side effect for me, and it was gone within 6 months of the treatments ending. Now, I was a 15 minute drive to the radiation center, which was on my way to work, so those 38 sessions at 8:00AM hardly even interrupted my daily routine.

There are other therapeutic radiation options available today, and I would push your Oncologist to review them all with you in detail, so that you have as much information as possible, before making your final decision. Dave mentioned Proton therapy above, and I'll mention SBRT below. I should note, however, not all potential radiation therapies are available at every cancer treatment center, so this may impact where you get your therapy, if you choose a treatment option that is not locally available.

I would suggest that you inquire about SBRT radiation (higher dosages, fewer sessions). I had a local metastasis on my pelvic bone that was identified in a PET scan, and they hit it with SBRT in 3 sessions, and that was 3 years ago. I had absolutely no side effects from this treatment option.

Regarding hormone therapies, they all work more or less the same, and the side effects are similar. Different folks react differently to the different hormone therapies, and the therapy can be adjusted/changed mid-stream, if the side effects are particularly bothersome. Again, your Oncologist is the expert on these hormone therapies, so push your Oncologist to discuss them all in detail with you. The reason for delivering hormone and radiation therapies concurrently is that the cancer cell kill effectiveness ratio is much higher, if the hormone therapy has already weakened the cancer cells, by denying them their Testosterone food source.

I've been on my PCa journey for 13 years, and I wish you the best of outcomes on your PCa journey.

Wheel

i remember it being mentioned on here, although it may not be practical for you, but a Dr Reiter at UCLA is involved in a current program that after surgery and a reoccurrence is found in a single lymph node and can be isolated and identified to that node with no spread, they can do surgery to get the node.

Macro

SBRT was offered - 10 doses but clearly the oncologist I engaged with at USC was in favor of the IMRT. I'm really heavily leaning towards a 2nd opinion and more review - waiting another 30 days or so is probably not a big deal. As I said earlier, knowledge is power and the more I know and the more confident I feel in which direction to take, the more I will feel committed should if or when the going gets "tough".

swl1956

I too agree with all above. Stick to the "oncology route". There are several scientifically debunked treatments such as homeopathic remedies and others for example Ivermectin which are scams. Risking these could cost you your life. Only treatments having rigorously been proven by phase 4 clinical trials should be considered. That said, due to different options and opinions by professionals it can be excruciating making a decision. In my totally unprofessional opinion, I would consider the newer ADT drugs immediately which in most patients will starve the cancer cells of testosterone effectively putting a halt to growth while you are deciding which radiation treatment to have. The newer oral drugs can be stopped quicker if needed and have a shorter recovery time of testosterone when ended. ADT and radiation together have more efficacy in high risk cases than just radiation alone. Also as mentioned above perhaps SBRT would be easier to endure due to much reduced number of sessions. Another option not mentioned above is brachytherapy. Brachytherapy although not as commonly used as external beam radiation has been proven more effective. These are questions you should be discussing with radiation oncologists. I would suggest seeking second opinion from a center of excellence.

I experienced metastasis to pelvic lymph nodes 6 months after an ablation procedure. Fox Chase Cancer Center urological medical oncologist and radiation oncologist both recommended ADT plus radiation. I've been taking Orgovyx, Zytiga, and prednisone for about a year so far. Side effects have been annoying, but very tolerable. In addition also have had 40 IMRT treatments total 80Gy. My only issue with the IMRT treatments was I struggled with the required having a full bladder and not pissing myself. My PSA has been undetectable for over 6 months. Bottom line is get second opinions and keep asking why they are recommending whichever treatment they are.

Steve1961

hear me out ..dr robert reiter of ucla they dom radio guided surgery …it may be for you ..since it is in the prostate bed it very well could be in a lymph node ….at ucla the inject a dye in you and during surgery they can pinpint the cancer and eliminate it ..imwill forward the video to you of dr robert reiter explaining this hugeeeeee breakthru .lhe saved my like with salvage surgery and did a fantastic job…I posted the video, but I will find it.

Steve1961

https://youtu.be/-ZXDohxylg0?si=9-M8gLPsq3MT5eRu

Steve1961

there you go my friend good luck no radiation no hormone treatment ..inwoukd get a consultation from him I don’t know what part of the country you’re in or what insurance you have. He is in Los Angeles, California UCLA, head of urology and prostrate cancer program. Can’t get much better. wish you the best i hope helps.

Steve1961

https://csn.cancer.org/discussion/comment/1725641#Comment_1725641

you remember my post i am impressed thank you therevare newer ways out there that work

Wheel

Steve1961,

I recalled your post because it immediately sparked my interest if I were to have a relapse after my prostatectomy in 8/24. I went the surgery route due to radiation concerns and the potential side effects from radiation in connection with especially rectal issues and bladder issues regarding the urethra such as scarring, inflammation and strictures. I know I have radiation as a backup, but this new surgery by Dr Reiter appears very promising in continuing to postpone Radiation and hormone therapy if applicable to a recurrence in a single lymph node which is not uncommon. All new surgeries start somewhere as my robotic single port one small incision prostatectomy that was nerve sparing, Retzius sparing not cutting the Puboprostatic ligament giving me no loss in penis length, immediate continence, and back sexually albeit with a boost from viagra.

Josephg

https://csn.cancer.org/discussion/comment/1725642#Comment_1725642

10 SRBT sessions are more than I've ever heard of. My guest/thought is that they suspect that there may be more cancer cells in the prostate bed, than just the one node identified in the PET scan. If that is the case, I believe that they think that IMRT is a more effective radiation therapy in the prostate bed for your use case.

Certainly something to discuss in greater detail with your Oncologist.

Old Salt

There is no specific 'oncology route'.

On a more positive note, IMRT is the more conventional route for cases with rising PSA after surgery. The therapy will cover not just the node that has been identified so far but presumably also others that might have cancer too small to be detectable right now. There are many reports of this approach on this and other prostate cancer forums. A daily trip to the radiation facility for twenty five days is no sinecure, but it will come to an end.

Steve1961

https://csn.cancer.org/discussion/comment/1725650#Comment_1725650

you better believe it doing radiation was the biggest mistake of my life