Confused and bewildered.

[Masirah]

Diagnosed with an aggressive prostate cancer in 2020, I was prescribed ADT tablets. These had awful side effects and so I took myself off them. Only able to have a telephone consultation with my oncologist, she agreed to allow me to participate in watchful waiting. My urologist in the meantime disagrees with the oncologist and suggests radical treatment. I don't like the potential side effects and am really looking for an alternative treatment. I quite like what Guy Tenenbaum achieved. The disease has not metastasized.

[Magnus1964]

What ADT drug were you on? There are others. If you are still stage one RP is the best choice. You could go for radiation, preceded by ADT therapy. Since you had one drug I might recommend casodex.

[Masirah in reply to Magnus1964]

I cannot recall the name of the ADT tablets, but having read up on ADT, including a presentation by an Israeli professor who is a urologist, I am not inclined to have ADT therapy. I am told that it has it's risks, including causing strokes and heart attacks. As for a radical prostatectomy, I am non too keen on that either. If anything I'd prefer radiotherapy or better still immunotherapy. My wife's cousin had RP six years ago and he constantly leaks and has to wear diapers. Even radiotherapy can damage your anus. I reiterate, the Guy Tenenbaum method of getting rid of PCa sounds appealing.

[cujoe]

Masirah,

In my humble opinion, aggressive cancer needs aggressive treatment. I did that up front, had a RALP (with bad pathology), followed by 8 weeks IMRT. That bought me 3 1/2 years until BCR and radical rise in PSA leading to 3 mos of ADT. I stopped ADT after having a good response and have been on a treatment vacation for 3 1/2 + years since - with undetectable PSA as low as 0.02 and testosterone in the 300- 560 range.

Starting about the time I had my initial surgery in 2013, I radically changed my diet and lifestyle and started on a diverse, well-researched regime of supplements, plant powders, and herbs/spices. I also grow broccoli sprouts and unusually consume at least a half cup per day. I am definitely an outlier PCa patient at this point, but believe I am where I am because I had the surgery to remove the prostate + - or as some at HU call it, The Mothership. That gets rid of the primary source of the cancer and, if done while it is organ-confined, could be considered "curative" for some. (Unfortunately, not for me.)

Every SOC treatment has some risk of side effects, both in the short and long terms. I recovered my erectile function to pre-surgery levels in about a year, but never recovered my continence. That issue was resolved by the AUS implant. Early last year AUS #1 failed and I now have #2 with 100% continence restored - at the squeeze of a bulb. Aggressive treatment upfront increases the chances that you can live to fight another day. At that later time you may well be able to control your PCa (if not "curable" by SOC) with complementary interventions, like diet, lifestyle, well-researched supplements, etc. The challenge for you is to make sure you get to have that opportunity.

All this is just my 2 cents worth. The decisions you make now are the ones that are the most important. Be very thorough in your research and thoughtful in your decisions - you life depends on it.

As for Guy Tenenbaum, you might want to read through this post over at the HU APC forum:

healthunlocked.com/advanced...

Whatever you decide, best of luck to you and feel free to ask additional questions.

Keep Safe & Stay Well - Capt'n K9

PS Creating a profile on your member page or giving more details here will help you get more specific response from other forum members.

[Masirah in reply to cujoe]

Many thanks for your response, which has much useful information to consider.

I am scheduled to have a telephone consultation with my oncologist later today.

Having discussed things with others who have experienced prostate cancer, I am reading up on immunotherapy, fasting and diet, plus increased exercise.

What were the side effects of your surgery and radiotherapy?

You signed off as Capt'n K9. That means I should perhaps take more notice of your advice, as I also have links with K9 .

take care.

Masirah.

[cujoe in reply to Masirah]

Well, I did have severe incontinence - which I am suspicious was caused in part or totally by damage done to my urethra during placement of the catheter during the RALP. That was "fixed" by the IMRT and subsequent physical therapy was unable to improve it. As a result, I eventually was evaluated and approved for the AUS (artificial urinary sphincter). That has worked fine, but as I had to have it removed and replaced last year, it is not a fix and forget solution. The younger you are, the less likely it will outlast your lifespan.

That said, I have 2 brother-in-laws and 2 nephews who all had RPs. Only one of them has had major incontinence issues. He made a very bad choice of surgeon and had open surgery vs robotic. I have discussed having the sling or AUS implants with him, but, as he has been living with his level of incontinence for over 10 years, he does not think he needs to do anything more. As I said in my earlier reply, I recovered my erectile function after about a year. As my relatives have not mentioned any issues with ED, I assume: 1) they have recovered well, 2) it is not that important to them at their respective ages, or 3) it is an issue they consider to private to openly discuss. In general, ED is a function of how skilled your surgeon is and whether there is evidence of cancer in the nerve bundles and major blood vessels when the prostate is removed. Surgical damage there is where the problems originate.

In the end, if surgery is contemplated, it comes down to whether you are willing to risk the possibility of side effects form surgery (Usually ED and/or c=incontinence) or from radiation (same + some longer-term possible damage to bladder and bowel tissue) vs. the possibilty of surgery removing all the cancerous tissue with the resulting possibility of never having to deal with PCa again. I am 7 years out from my post-RALP adjuvant IMRT and am unaware of any side effects from the radiation treatments. The newer radiation techniques are quite good a restricting the radiation field and limiting potential damage to surrounding tissue.

When considering surgery, it is most important to have it done by and experienced surgeon at a center of excellence where RPs are done regularly. Some people suggest that you should try to find a surgeon who has done 100+ procedures. Now that robotic surgery has been around for quite some time, that should be easier to do. Here is a great 10 year old article about the development of the RALP procedure now in use for most prostatectomies:

content.time.com/time/speci...

Hope your phone consultation went/goes well and you get your questions answered. It a difficult road you travel, but know that there are many who have been there before you and can help you along the way.

Stay Safe - K9