I apologize since this post is a lot like a previous post I made , but I become anxious after my MO visits. By way of background, pre-surgical PSA 8.9, RP in January, 2019. Surgical biopsy GS9 with EPE, SVI and 3 positive lymph nodes. First Lupron shot when catheter came out. PSA has been <.1 since first test after Lupron shot . Eight weeks of pelvic radiation May-July. Current PSA is <.01 and testosterone<7.
My MO's attitude is very unnerving to me. His attitude in essence is " You have high risk cancer, when biochemical recurrence happens we will scan and see where it is and treat it. In the meantime there is nothing to do.
I read the forum every day and see warriors going to Germany for LU 177, finding Cholera vaccines in Canada , taking tapeworm medicine and a host of supplements.
There are two things that really bother me. First, this is the type of MO many members of this forum advise to steer clear of as not proactive enough. Is this guy just leveling with me or is he stuck in SOC rigidity? Secondly, should I be taking matters into my own hands and trying to arrange additional treatment like LU177 or Cholera vaccine, and starting myself on a supplement regime?
I appreciate all points of view on this. Thanks.
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DFL208
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Do you exercise / workout? That is the first thing I would be doing. There are a lot of articles on the internet about exercise and cancer.
At least clean up your diet, eat more veggies especially the cruciferous. Not sure you have to go vegan completely.
Search for articles from the following members regarding supplements: Nalakrats, pjoshea13. Start reading what they have to say. There are others, but start with them.
Do something for your mind to stay positive; meditate or listen to something you like that makes you feel good & relax. Don't generate more stress for yourself.
Can't advise you on the LU177 or Chorela vaccine. I am not at that point.
I spend at least an hour a night reading articles about nutrition, supplements and treatments. Become your own advocate. You will get a variety of opinions here from eat what you want to be a vegan or go keto. You are going to have to decide what is right for you. You can go crazy if you follow all the different opinions you will get.
Also sounds like you should go get a second or third opinion. Find a doc that you like.
You have to deal with what is on your plate. You are anxious and prone to falling for fake news" of the type some purvey on this site. Your MO sounds very good - why would you be attentive to any info that is less than that quality - don't you deserve the best? I know how hard it is to wait - but sometimes that is the best you can do - the results of the salvage radiation and adjuvant ADT you've had may take a couple of years. You may have already been cured - to what purpose would you treat a disease you may not have?
Brilliantly said Tall_Allen. “Deal with what is on my plate”. That’s hard to swallow politely for me.
So why do not I focus on my quality MO?
So why do I find it hard to wait for progress? Meaning lower PSA & T-levels? I just got those excellent facts 2 weeks ago. 6 weeks post 1st Lupron D injection.
So now I’m waiting, no pushing for 1st CT Abd/pelvis & NM bone scan. Why? More proof of positive progress.
Like your comment Tall_Allen
I know how hard it is to wait’.
Tomorrow AM: continue to wait on MO RN’s call? Or forget about it?
Instead of waiting for something that may or may not happen, get back to living your life to the fullest. Looks like you’re already eating well. Get out and exercise, and enjoy yourself. You’re numbers look good. All anyone has for sure is today. Live, love and be happy!
I don't know whether any additional treatment at this time would do anything more for you than add side effects and assist the development of drug resistance. After all, the standard of care followed by your MO is the standard for a reason. Departing from it might bring rewards but might also cause harm. I think what I'd be inclined to do in your situation is just what Captain_Dave advised. Exercise hard, get on a healthy Mediterranean diet, and consider supplements that can assist in slowing down or stopping progression of the disease.
Here's the National Cancer Institute's analysis of nutrition and supplements for prostate cancer: cancer.gov/about-cancer/tre... . It's a very conservative analysis, only suggesting things that have empirical evidence to support them. You probably won't go wrong by using some of their suggestions.
pjoshea13 and Nalakrats are both scientists themselves and have investigated additional options that have not yet made into the NCI list. Some of them might be proven in the future. Some may not. Sometimes Patrick and Nal believe they've been helped by unconventional supplements, and sometimes they have tried them and concluded that the supplements either didn't work or even caused harm. If you look at their postings and are considering something they have tried, be sure to search for any later comments they or others have made on those supplements, and check any articles they cite. They aren't the only people on this forum that have experimented with supplements, sometimes very carefully and intelligently, but I like that they have scientific training that they can apply.
If I were examining any additional treatment at this time, my first choice might be Provenge. It's a weak treatment, but you've got a weakened cancer at this time and Provenge might be just the thing to put enough additional pressure on it to enable your immune system to hold it down for the long term. You might ask your MO about this option.
And who knows? Tall_Allen's speculation that you may actually be cured is conceivable. Hold off the heavy duty gut wrenching treatments until you have clear evidence that you need them.
What do you want to treat? All of the indicators are that your cancer is under control and in remission. Seems to me that what you may want to treat is yourself: work on diet, work on healthy exercise, work on meditation and quieting your anxiety. Those methods are free. Those methods are healthful. Agitating over whether or not your MO is aggressive enough in the opposite of healthful. Maybe a second opinion would help calm and reassure you. I hope for your and your family's sake that this is true.
My journey is very similar to yours. Pretty much the same results after surgery, I just finished my radiation TODAY!
When I started ADT I asked my MO if adding zytiga at this time would be a good idea. "Hit it early and hit it hard". I figured there was a good chance that the cancer had escaped the pelvic area already, so even with radiation I would still have stuff floating around.
She agreed so I've been on zytiga for coming up on 6 months. I do have an appointment with Dr Mark Schultz in Marina del Rey in February to get a second opinion. $1200!
In the meantime I am trying my best to enjoy life and not worry about it too much. I have changed my diet, more fruits and vegetables, no fried food, but I still have a treat here and there because I enjoy them too much to give it up. I would be totally miserable going vegetarian or similar.😋
I figure life is too short as it is,so get yourself a good mental attitude and enjoy life as it comes as other people on this form said,you never know what's coming or how far down the road it will come. I hope to have many years ahead! Hope you have the same.
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Recommendation for MO @ Mayo Rochester 
