The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

What to do?

Macro
Macro CSN Member Posts: 8 Member

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.

Comments

  • Clevelandguy
    Clevelandguy CSN Member Posts: 1,376 Member
    edited 1:06PM #2

    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
    Josephg CSN Member Posts: 569 Member
    edited 2:52PM #3

    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
    Wheel CSN Member Posts: 260 Member

    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
    Macro CSN Member Posts: 8 Member

    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".