I am new to this so apologies if this has been discussed in the past. I will like to get any tips or resources to convince my dad to accept medical treatment. And how do I communicate with him without angering him or making him feel forced which has put a strain on our relationship.
So some background, the cancer is still contained in the prostate and has not spread but he prefers to do ozone therapy and unfounded treatments, using hormone tablets and surgery as last resort. This was a great surprise to the doctor and some of my medical friends as his PSA was 340 so I think he is lucky. Unless the tests were not accurate ( please recommend what other tests and follow ups you think he should do).
Anyways, I am trying to convince him that last resort is it spreading and he doesn't have that luxury. But what I realised is he feels mistreated by the medical staff and doctors who just told him get some tests ( bone scan and cat scan) and take some tablets. No comprehensive talks or support groups or anything was provided. It's as if he went in for a flu shot. Although, I live in Australia he is from the Caribbean so I'm not sure if there is not any proper support system in place. But this has resulted in him seeking info from random online sources and unqualified naturopaths. I sent him some research papers about these therapies that explicitly state it's good to compliment some forms of treatments etc but he thinks its "pharmaceutical conspiracy".
I am really heartbroken and feel helpless seeing him not take this chance to make wise life and death decisions.
Any help, resources, advice, contacts will help greatly.
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It's unlikely that the cancer is contained in the prostate with a PSA of 340. Does he have any pain symptoms? I think the first step would be for him to get a diagnosis and to see the full extent of the disease. Then, treatment options can be discussed. I think the key here is for him to make an "informed decision". Ultimately, the decision on whether to treat any disease is up to the patient. The best we can do is give them ALL the information they need to make that decision. I think the first step in that process is diagnosis.
Thank you, no pain symptoms yes I have advised that he get a 3rd opinion. And trying to get him to Miami or somewhere more advanced as I do not trust the medical system. I'll keep you all posted.
To me, the goal should be complete diagnosis and fully informed. Even if he initially decides against proven treatments, he can change his mind if he knows what is available. There are a lot of people that try alternatives and realize they aren't working, then switch to proven treatments.
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I agree. With PSA that high he should do a PSMA PET CT to see if there are mets.
This can change the possible therapies a lot...
How is his alkaline phosphatase level (or bone alkaline phosphatase)? That's a easy blood test.
And if he wants to go the alternative way he should know more about supplements, off-label meds (like metformin, statin, etc..), diet and exercise.
Did he have the bone scan/CT? That is probably all that he needs to do as far as tests go for now. The tablets were probably Casodex, a kind of hormone therapy that a man with metastases usually starts with before getting injections. If he is Afro-Caribbean, prostate cancer often follows a more virulent course - whether because of a genetic variant, or use/access to adequate healthcare.
A government-funded study (not Big Pharma-funded) found that people who use alternative kinds of healthcare are more than twice as likely to die from their cancer. You can send him this article:
In the NCDB, complementary and alternative medicines consisted of herbs and botanicals, vitamins and minerals, probiotics, Ayurvedic medicine, traditional Chinese medicine, homeopathy and naturopathy, deep breathing, yoga, Tai Chi, Qi Gong, acupuncture, chiropractic or osteopathic manipulation, meditation, massage, prayer, special diets, progressive relaxation, and/or guided imagery. Yes, those "therapies" were bogus.
Ha ha, that's just an absurd idea that every single thing NOT Pharma driven, doesn't work. My entire 25-26 years of Advocacy has been to share the existing evidence of many wonderful things from the natural world making a real difference in our health and well-being. One stupid and unrefined study which did NOT specifically call out what they were examining, is not important. It's a dumb study. I asked the authors what therapies they examined and they said they didn't really know.
It's not because it's not Pharma-driven, it's because it's tested for safety and efficacy. For example, the randomized clinical trial on pomegranate juice that proved it had no benefit for PC was not paid for by Pharma. Neither was the RCT that proved Vitamin E contributed to prostate cancer. If real clinical evidence is unpersuasive to you, it is only because you are so vested that no proof is adequate. I'm sorry you've spent 25-26 years on unproven witches brews of doubtful safety, but you have obviously drunk the Kool-Aid.
I just listed the therapies they included. Perhaps you missed it:
In the NCDB, complementary and alternative medicines consisted of herbs and botanicals, vitamins and minerals, probiotics, Ayurvedic medicine, traditional Chinese medicine, homeopathy and naturopathy, deep breathing, yoga, Tai Chi, Qi Gong, acupuncture, chiropractic or osteopathic manipulation, meditation, massage, prayer, special diets, progressive relaxation, and/or guided imagery.
I refer to you the Annie Appleseed Project Facebook page with posted studies just about daily. And to our website with archives from the 1990's. Same studies, same beneficial outcomes. Sorry, we just disagree.
There exist standards as to why some research is better than others. I refer you to the generally accepted levels of evidence. It's not a matter of opinion - it's what is conventionally accepted as scientific fact. If you wish to treat yourself based on what you personally believe to be good enough evidence, that's your lookout. When you potentially harm others, that's another story.
I am a Cochrane Consumer Collaborator. I well understand standards of evidence. However when a natural product, substance or protocol cannot be patented, it is extremely difficult to do large-scale Level I trials. This is NO accident. Funding is controlled by Big Pharma as they are the only players who can be in that playground financially. I have testified at FDA hearings where they are comfortable stating: "There were NO unexpected toxicities". I stand to state: "The expected ones S*ck." Therefore a real need for complementary/integrative oncology. And, too, not everyone is healed from their conventional treatments and not all of us can or wish to take them. Thus I support the right to show the evidence that does exist and there is a preponderance. Last post as I have to work on other stuff. I doubt we can persuade each other.
It is the FDA that demands proof of efficacy and safety, not Big Pharma. They would be happy to not shell out the big bucks for it. As I said, there have been RCTs done by other entities. Often, the quality is not good enough to meet the standards of even the most lax peer-reviewed publications. If you understood levels of evidence, and why they are important, you would take down your website.
Hi...I can sympathize with your frustration. I hope you can convince your DAD to have his current condition diagnosed to make sure it has not metastasized.
I have gone through the Prostate Cancer with my husband for a 2nd time last year. First 10yrs ago - I was a wreck, searched & researched a treatment that would NOT affect his quality of Life, NO side effects or pain. I found HIFU (HighIntensityFocusedUltrasound). It was a treatment not available in the USA but widely used in Europe & many other countries. It now is a FDA approved treatment in the USA. He had the 'outpatient' treatment done in Germany. All was fine for 10yrs - he was advised that the procedure can be repeated if there is any sign of more cancer. He was negligent with regular checkups, until I insisted, following our return in the Fall 2017 from Europe, where he had extreme issues with frequent urination. The DIAGNOSES was there was Cancer on the Prostate. We called Germany and another treatment option was there.
In conversation with a close friend, we were informed about PROTON BEAM THERAPY and were put in contact with three Gentlemen who all had the treatment - NO SIDE EFFECTS, NO PAIN, NO HOSPITAL STAY, NO SURGERY. We found out that a Proton Beam Treatment Center was only 60miles from us. It is a daily outpatient treatment, length depends on the individuals condition. My Husband had a total of 42, appr. 20min. treatments, Monday thru Friday in 2018. His last check up was in March & will have his next check up in Sept.
He never felt ill during of at any time from the treatments. Prior to receiving the Proton Beam Therapy he was on LUPRON. LUPRON (in my personal opinion is the "DEVILS" advocate) Some side effects of LUPRON include MOOD changes, Hot Flashes, weight gain, headache, general pain. That period was the most difficult - my husband was NOT himself. I felt non-existent, lonely, hurt.
I hope your Dad will take that important step to talk to a well informed Physician or two to get the least invasive type of treatment.
this is Hberg08 again....my husband is doing very well since his Proton Beam Treatments and no Lupron. All those side effects are gone. I have my husband back.
Ultimately, it is his life, his body, and his choice. You didn't mention his age, general health, quality of life, or any other background information that might help put his decisions into perspective. If he is 63 and in excellent health the decisions look a lot different than if he is 93 with multiple medical issues.
The sad truth is that unless he takes a lot of time and effort to find some really good doctors for his team, he WILL be mistreated by the medical staff and doctors. It sounds as if he has already experienced that. It is the norm, not the exception.
As others noted, with a PSA of 340 it is extremely unlikely that the cancer is confined to his prostate. That means surgery would do a lot more harm than good, and radiation isn't likely to do any better. The options for treating advanced prostate cancer are growing but still limited, and nearly all of them involve chemical castration with severe quality of life reductions.
You wrote that you wanted to see your father make wise life and death decisions. He may be doing so already. Only he can decide the right balance between quality of life and the hope of some modest extension to the number of days he has. Medicine cannot cure his cancer and while it might be able to extend his life it will come at a severe cost that he may not be willing to accept.
Cancer patients need support above all else. You can support him even if you disagree with his choices. You can love him and savor every moment with him no matter how many remain.
Thank you for your perspective. He is 65, very fit and eats mostly raw foods, no meat. Still works and acts like nothing is wrong but yes he does need to be well informed.
If your father has never seen them, nor had any doctor discuss his condition and treatment options in sufficient depth, here are a couple of links to some basic free Patient Guides for Prostate Cancer from the National Comprehensive Cancer Network (NCCN) and the Prostate Cancer Foundation.
I agree that a PSA of 340 means his cancer has likely spread. When I was diagnosed, my PSA was 103. At that time, my urologist warned me that there was a very high likelihood that scans would show metastasis. He was right. It had already spread to lymph nodes, pelvis, spine, and rib cage. Your father should definitely get scans done but the choice of treatment is his to make. Hopefully he will do more research and accept medical intervention. Good luck.
Yesssss the doctor said the same thing bluntly. I have been waiting to organise an overseas consultation in Miami before I travel as I am in Australia and would like to go when I can be useful. So I am sharing these tips with him and my younger sis who is there. I asked them to please go for another opinion and maybe see an oncologist as well. Although not wise as I can't do much waiting around with him back home, also I need to continue working to help out. But I feel like I should return home and be there physically to help action these basic requirements. It is really causing me great stress and I feel helpless over this part of the world
You say your dad is from the Caribbean, but do not say where. Nor is it clear if he is still living there. I lived and worked on Trinidad for 20 years, where I was diagnosed with PCa in 2004 -- which proved to be metastatic. So, it needed long-term control using ADT.
The treatment I got there was a good as one can get anywhere. The care, however, was bloody awful. I had to get my own PSA tests at an independent lab, then collect the results from them and carry them to the doctor. ("Carry." I like that, it being part of the West Indian dialect I picked up). It was a half hour drive from one place to the other. Those were the most anxious minutes I have ever faced. To open the envelope or not? If I caved in and peeped, and my PSA had come down, I would get relief. If it had gone up, my adrenaline levels would go through the roof. What a !@(@**#$ inhumane system. Why could the lab not send the results straight to the doctor?
That would be followed by a 5 minute conversation with a urologist. He would simply ask my PSA result, write it on a record card (no computerisation there, except for his billing system) and then hand me a prescription for whatever. This I would have to carry to the wholesalers. If it was tablets, fine, If it was an injectable (from a wholesaler 45 minutes from him), I would have to collect it and carry it back to him to be administered. The cost per visit was cheap by American standards (about US$100), but does that justify the cursory nature of my appointment?
By the way, for anything beyond basic bone and CAT scans, I had to travel to Miami -- at my own expense.
At no time was any question asked about how I was coping. Nor were any details ever provided regarding how I might cope with the side-effects. There were no MacMillan nurses with whom I might talk over my anxiety. No support groups for men with advanced prostate cancer.
I stayed on Trinidad because I loved my job. I was (am) a geologist/palaeontologist, and Trinidad is fascinating for both. But it was a constant fight to maintain my sanity in the face of the anxiety from my treatment. Is it any different on any other islands? I suspect, from my years spent on St. Kitts-Nevis and my visits to Jamaica, that the answer is No -- for the English speaking Caribbean at least.
Please tell your dad, if he is still in the Caribbean, that the treatment (tablets, injections) he receives will be world class. That I coped with metastatic PCa on Trinidad from 2004 - 2017 says something regarding that. But for care and support. . . he is on his own, unless he can afford psychiatric care also.
Omg Brent my dad is in Trinidad, but he is Barbadian and sorry to say that is almost exactly what he experienced. The bone scan service ( only two available in the country) returned a call saying they are going on summer vacation for 1.5 months so to travel overseas to get it done. Thankfully he got an appointment at the other one. But they really horrible in support and providing information. Thanks for sharing.
I no longer live on Trinidad. When the drugs became unaffordable (i.e., more than a month's salary for me, a university prof), and when I no longer felt I could trust the insurance company to cough up, I returned to the UK. If I can be of any reassurance regarding life and treatment on Trinidad, however, please don't hesitate to get in touch.
By the way, I am reminded of the time I was given an appointment for a bone scan in POS. Taking time off work, my wife and I drove there for the arranged time, struggling with Trinidad's typical traffic to do so. When we got into the place, we were told that we had made a mistake, that the person running the scanner was not in that day. I fumed, "What mistake? We asked you to repeat the appointment details and rang back to confirm."
The receptionist avoided eye contact and merely muttered, "We apologise for any inconvenience caused." It was as if that phrase, gleaned from God knows where, covered everything and absolved them of doing anything further.
Like I say, for care, you are on your own. A thick skin and great resilience are vital.
to Brent.... Wanna description of the Caribbean style... There used to be an Airline "BWIA West Indies Airways a/k/a British West Indian Airways or BeeWee"..... but locally called "But Will It Arrive" or "Better Wait In Airport". We will go liming some day....
to AHOLD..... Wanna description of the Caribbean style... There used to be an Airline "BWIA West Indies Airways a/k/a British West Indian Airways or BeeWee"..... but locally called "But Will It Arrive" or "Better Wait In Airport". We will go liming some day....
Tell your Dad if he refuses to listen to you, tell him no more Carnival for him....
Where in the Caribbean is he located..? Can he get to the US for treatment? Does he have transportation issues? I have flown for Bahama Habitat and we have pilots flying back and forth..Also doctors without borders and Angel Flights Southeast....If we could get him to Duke Cancer in Durham NC he would be in good hands...Or MD Anderson..They have a Ronald McDonald house and great support for out of country patients....If he has the ability to fly commercial I could aid in logistics. He would fly into Houston Hobby..Bush International is also available just depending on his flight of origin (if he flies direct or from a US city).I have been going to Texas since 2012 and Duke since 2018. MD is a little better set up for out of country patients but it is a little farther ..If he flies commercial not a problem.......If you make that choice to Houston we can have people pick him up I have know for 7 years that will get him to the right place and in the proper hands who only transport to the hospitals..Going somewhere far away in itself can be stressful so we can eliminate that....Blue Skies Sky King....
I understand he has made no choice but if he objects due to distance or a strange facility you can reassure him that he has back up....carry on and good luck
Thank you, he is in Trinidad and we were considering going to Florida at Cleveland Clinic or Mayo Clinic. Thanks for sharing those other options. He is in no pain and still walking around and operating at full capacity.
In terms of costs and payments, do you have a idea on how this works?
Treating cancer is complicated. The therapies are painful and may cause many lasting harms. Sometimes what is called either 'watchful waiting' or 'active surveillance' is used. That said, I founded a cancer nonprofit to show the evidence for making those informed choices in complementary and alternative (holistic) therapies. He ought to check our website annieappleseedproject.org to see studies (it's a SEARCHable site). And ozone is an acknowledged cancer treatment. I would also suggest, as some of the men have mentioned before, Modified Citrus Pectin (Pectasol) because it actually has evidence of killing metastatic prostate cancer cells. With my good wishes. And stay calm, in the end it is his choice and you will have to accept that. I know it is difficult.
Oh how I wish that I could have another conversation with Vernon. 100% committed to internet cures.......... after a 55 year relationship, he is missed. I took him to see my guy, would not follow a plan, gone six months later.
Many men are like him and I was as well. I tried natural therapies. Some work foe some people but it is a roll of the dice. That's not a good thing when your life is involved. I would try to get him looking at this forum so he can discover for himself what others are going through and make more informed choices. A man can be stubborn and discovering for himself can help this. This forum helped me make what I think were good choices for me . I had surgery but had a much lower PSA and so far so good. Good luck. He is lucky to have you.
I understand your frustration. But here is another perspective. The medical system has only offered my husband treatments like surgery when it had already spread which is useless and compromises an already compromised immune system and leaves a man with life changing side effects. And now Zytiga/prednisone even though I had to read his last 2 test blood results myself (Extremely elevated liver enzymes a month ago & extremely anemic with Nucleated red blood cells this last week). I constantly have to push back on them prescribing something that the side effects are “elevated liver enzymes” or “anemia” until his body is strong enough to handle it. I have to be a constant advocate and in the know. They are smart and empathetic doctors BUT their hands are tied to “standard of care”. They have to offer someone what’s great for some, but not everyone. And when it fails, they can offer the next thing on their list. These aren’t always the best things for YOUR Dad. And it’s a full time job to keep track of the Doctor recommendations, all the appointments, tests,, etc. if your Dad doesn’t have that advocate by his side each and every day, then the best he can do is protect his body and mind naturally. Cancer is a very emotional journey and being empowered in itself can really help the patients. Read “radical remission”.
We use some conventional treatments & have a great doctor at UCSF. But my largest source of stress & frustration comes from the medical system. We also do a LOT of other treatments. A few trips to Germany, three Naturopathic Doctors, a Nutritional oncologists, etc. These appointments and doctors and treatments bring us hope. And hope replaces our fear. It’s all we really have in this journey.
I have three daughters. If they typed this post rather than being 100% lined up behind my husband and his treatment choices, I would be saddened. Your dad is not being irresponsible although it may seem that way to you. He is following his intuition, questioning the system and trying really hard to survive! Because he can read the statistics online and see that the system doesn’t work for everyone!
The best you can do to bring peace to BOTH of you is support him, listen to him and trust him. He knows what’s best for his body. For his soul.
I 100% agree and expressed this to him but I will be more supportive with natural interventions that is tried and tested not pop up wannabes in Trinidad who found a way to make money from the vulnerable so unfortunately the context there I see more as exploitative than hopeful.
Great and valid point! There is always someone trying to sell their snake oil. I am the skeptic and advocate. It’s important to play both rolls in this crazy fight to the finish!
You may not be aware, and your father also, that there is a field called complementary medicine that combines traditional oncology with medications that are compatible with traditional cancer treatment. Dr. Shamsuddin’s cancer research for the last 35 years at the University of Maryland medical school has made many patients aware of the value of combining IP six with traditional hormone therapy. Seven years ago I was diagnosed with stage four cancer (metastatic) And started Lupron. I was classified as Gleason 8.In 2015 I discovered Dr. Shamsuddin’s book IP6 and Inositol (Amazon) and started using IP6. My oncologist and urologist don’t want to hear about IP6 but nevertheless appreciate the results. You can buy IP6 over the counter. Combined with hormone therapy it will add a horse power to his suppression of his PSA. It did mine. Good luck.
Get the scans, it probably has spread the places and start medical treatments before it is too late. He is scared but death is worse, it probably is treatable , push as hard as you can for treatment, good luck. When I found out it spread to the bones I did not hesitate, if not I would not be around .
Steve Jobs! A stitch in time saves lives. When my truck is low on oil I don't place a pyramid loaded with incense on the hood. I just fill it with oil. Proven to work! Good luck. By the way, a prostatectomy is not the end of the world, procrastination is. Best wishes.
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