I was recently diagnosed with stage 3, non-metastatic prostate cancer: Gleason score 7 (half 3/4, half 4/3).
I have had both hips previously replaced.
I recently had three stents inputted.
I don't like the feel and taste of androgen replacement therapy.
Does anyone know of a legitimate entity that will treat my cancer without relying on ADT?
It's your choice. If you tell your doctor that you are willing to risk a greater chance of recurrence because you don't like the "taste and feel" of short-term ADT, no one can force you. He may or may not make you sign some document that you are going against doctor's advice.
Thank you.
My Doc told me that ADT for salvage radiation was optional for me. In my research my cure rate was approx 5% greater if I had 5 to 6 months of ADT. So it was a no brainer for me, I wanted the highest percentage potential as possible so I went for it.
I am not happy about it , but I expect I'll take 6 months ADT. What method did you use, if you don't mind? They want to start me on a three month shot.
I still have my prostate.
My Doc preferred Orgovyx. He thought it acted quicker, less side effects and his patients recovered sooner as well as thier Testosterone level came back quicker to normal.
I had 6 months of Orgovyx and SBRT. One month after stopping Orgovyx my testosterone went from 14 to 482. Orgovyx was a piece of cake....some hot flashes, loss of libido....nothing I couldn't handle. Why not give yourself the best chance of beating your cancer?
Is Orgovyx the oral med? Thanks for the answer.
Yes, daily tablet. The beauty is IF it is absolutely intolerable....quit taking it. While I never had any intention to stop taking it.....it does give you a modicum of control on this rollercoaster......
I will explore this one. Moffitt hasn't offered it as of yet.
BTW, he was the first to offer Cyberknife on the USA's east coast and is pretty accomplished.
Since my diagnosis nearly ten years ago I have been able to find legitimate entities that support my efforts to defer ADT for as long as possible; and they all offer ADT as well. I did do one year of bicalutamide as a compromise after my third treatment salvage ePLND. Looking back, I wish I had at minimum delayed the start of bicalutamide. Advice/'SOC' is a broad spectrum of care, ranging from (sub) minimal to ultimate. All the best!
Is prostate removal , ie prostatectomy, not an option without ADT???
ADT was not recommended before, during, or after my Radical Prostatectomy (RP). Three years later, when my PSA started to rise, Doctors advice was to have Salvage Radiation along with ADT.
The two most popular options for initial Prostate Cancer (PCa) is RP or a form of Radiation with ADT. My Urologist when asked, didn't want me to take any ADT before my RP.
Yes. You will just need to decide if you want the somewhat higher probability of success with ADT + SRT. I don't recall the comparative numbers.....Google and/or TA's blogsite will give you the comparative numbers. Is your concern primarily re your heart, or something else? Are you also going to have whole pelvic RT, or are you convinced that any remaining PCa is solely in your prostate bed?
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You cannot go by the "Feel & Taste" if it, without ever having Felt and Tasted it... Where are you getting your information from as to the negativity? The internet? If so, tht is a mistake!
The heterogeneous nature of the disease, cancer, dictates that every single one of us have an individual experience, yes, our cancer is unique, we are not all the same. We do not all have the same cancer tissue, volume of disease, placement of lesions, cell type and genomics. Also, we do not suffer side effects exactly the same as everyone else, and we won't know how we, our bodies, will react and respond until we try!
Fact if the matter is ADT is SOC. So finding an Oncologist who offers alternative therapy won't be easy... There are alternatives, but they're not mainstream, so you'd have to search. Weird thing is the effects may wind up being the same for all the effort. So there's that too.
I had a choice for my first line therapy, RT & 2-3 years of ADT or Surgery. Mainly because of my research and yes, internet searches, I chose NOT to go the ADT path fearful of the potential SE's. Well, a short period later as my PCa stayed persistent and progressing lending to now sustained, life time ADT, my fears were unfounded. I suffer very little SE's at all... Point is, you got to dip your toe in the pool and stop worrying about the skewed opinions you'll encounter online. If you want to be able to reverse course (ADT) the oral pill form Orgovyx is the way to go. It is FDA approved so there should be absolutely zero issue with any Oncologist prescribing it for PCa when ADT is an option. If you experience negative SE's stopping it returns Testosterone levels within days. Anyways...
Good Luck
you are faced with a difficult choice. As I see your options they are:
1. Not do take the ADT and risk not being able to cure the disease because you have some imaginary thoughts of how bad it is going to be without trying it.
2. Take the pill for one month and see the reality of side effects firsthand.
3. Do what Tall Allen said and sign the waiver! You have that right.
Pick one.
I agree that those are the options. Appreciate the comment.
Info on number of cores positive and volume could be helpful.
MY GLEASON 10 right half was cryo-ablated in May 2015 and has not returned. My LEFT Half had IRE for GL6 and GL7 that came back in 2018 so re-IRE. Have a recent return of 3 small 3+3 in left half doing nothing and am watching PSA. I began with a bilateral Orchiectomy (did not want ADT drugs) but treating Dr. prescribed Testosterone replacement in 2016 with *T* rising to 1,600ng/dL after biweekly shot. Was watching PSA every 3 months and I played with injection frequency as a form of BAT and haven't suffered.
74th Birthday next week, avid cyclist now with *T* <2.5ng/dL since off of Testosterone injections, only have occasional warm flashes and keeping eyes on PSA numbers expecting to go back on when numbers are stable.
Above is just another experience that's different from others and as Dr. George Sheehan (died due to his PCa) said --
“We are each an experiment of one. A unique, never-to-be repeated event.”
Good LUCK
oops a p.s. - Avodart then to Dutasteride from beginning 👍
12 cores all positive. Half 3-4, half 4-3 Not sure about volume
Cletom wrote --- " Gleason score 7 (half 3/4, half 4/3). " ---
AND -- " 12 cores all positive ... "
Thank you for your reply. 👍👍
My interpretation of the information you gave was that your biopsy was a 12 core random TRUS method biopsy that IS becoming less used throughout THE World because it is extremely incomplete. If indeed it was as SIMPLE TRUS biopsy, I would request a 3TmpMRI be performed ASAP.
Your decision on ADT or no is better made if you (and us) know more about your disease specifically than ‘half 3/4, half 4/3’ and if you know more about ADT than that you don’t like the ‘taste and feel of it’, which presumably means you’ve done neither.
You’ve not said what type of doctor you’re in the care of, or what treatment has been suggested for you yet if any. Any spread whatsoever outside the prostate, even microscopically , dramatically increases the likelihood ADT will be prescribed.
You’ve obviously had a biopsy so you have some of this information now. MRI guided biopsy or no? Total number of cores sampled, number of cores positive, the percentage of disease saturation within the cores, the percentage of Gleason 4 in the 4+3 cores, the location of the diseased cores all make a difference. There are algorithms available to help you decide.
If ADT is suggested, know that the side effects and their severity are dependent on a number of factors not usually addressed in the negative folklore about it.
Do you exercise regularly and if so what kind? This is a huge factor. You are 77, have 2 THR’s and heart stents. Despite this, your overall physical health may be quite good-or not. The more strong and fit one is, the better ADT is tolerated-by a wide margin.
Heed the words about Orgovyx-it is preferable for a number of important reasons beyond that is pills vs shots-if you can obtain it that is.
When you say that you are looking for ADT alternatives, you will get them for sure. Confirmation bias has never been easier. Hearsay is limited in worth. The right ADT call for you should be made on a lot more than taste and feel . Great luck to you!
The question to me is will ADT (at this point) extend your life expectancy and it's hard to nail down that answer. Good luck with whatever you do.
It appears that all ADT is palliative and not curative. If I can find an alternative treatment that will delay cancer progression, I will take a long look. Thanks for your post
Oh it absolutely is palliative. I did a poor job of making my point. My point is even when ADT appears inevitable there is still a decision to be made as to when to initiate it . There are lots of studies as to timing . At 77 yrs old your decisions will different to arrive at than than 57 or eve a 67 yr old. LOL Just something else to worry about.
ADT blocks testosterone but testosterone isn't the bad guy - it's dihydrotestosterone (DHT) that's the bad guy
Approx 10% of testosterone is converted into DHT and it's DHT that should be targeted
The enzyme that converts testosterone into DHT is called 5 alpha reductase
There are drugs that block 5 alpha reductase and there are natural compounds that do it too
en.wikipedia.org/wiki/List_...
Are you able, then, to do without ADT? How do you learn proper dosing if that's the goal? I'm more than interested in this thread.
I can't give medical advice Cletom
However looking at your profile I can see you have had heart issues (stents) and hip replacements I'm guessing the hip replacements were due to osteoarthritis? Both are probably due to low testosterone so it's understandable that you are reluctant to have ADT especially at your age
My husband wouldn't do well on ADT for a few reasons so bc his psa is rising slightly he is now having a phytoestrogen called Aguaje which I have been taking for years for menopause He had RP surgery in 2018 he's 76 yrs old
He also has Evening primrose oil (EPO) capsules - epo is a potent DHT blocker
He has a large slice of watermelon every every day for lycopene and to increase nitric oxide
Have you looked into estrogen patches I don't think it's easy to find a GP to.prescribe them but estrogen in high doses castrates men
Like I said I'm not giving advice just food for thought ?
May I ask the side effects your husband has endured? I understand gynecomastia is a probable but I believe I have the answer for that.
On the Aguaje he hasn't got gynecomastia no, he's got a bit of of a belly now, he was getting a bit thin before he started the Aguaje I think he looks well on itThere is alot of fake Aguaje around bc it's really popular don't buy it from India , also start on a small dose it's really potent
He's grown more hair after having Evening primrose oil he has 2x 1000mg capsules a day
Also Aguaje doesn't decrease libido if anything it increases it
Your information has been very helpful. Thank you. Are the only things your husband is taking for his PC the Aguaje and the Evening Primrose oil? No chemical ADT?
Why not go to the Aguaje directly and skip the estrogen patch? I'm feeling very overwhelmed and under-informed; apologize for all the questions.
My husband is on Aguaje and evening primrose oil capsules yes but also Baby dose of asprin to counter arachidonic acid
Melatonin 3mg a night
Also husband had surgery to remove prostate when he was 70 years old in 2018.
His psa has risen slightly but I didn't think salvage radiation and Zoladex ADT was the way to go
I suggest you bring anything said here to a top MO. Eg, that you needn't be concerned about your T level.....just DHT??? If true, there should be studies supporting suchh an assertion!!! Ask for them!!!!
I am around your age and just completed radiation and six months of ADT. I Had a similar cancer diagnosis as you. I am in great physical shape and exercise everyday - resistance and aerobics. At my last annual physical my GP asked me how long I thought I would live to.
Have you ever asked your self what is more important - Quality of Life or Longevity or is it possible to have both? Healthful Living has always been my goal.
Dr Mark Schultz at INRI.com made a video recently about ADT approaching 80. It might be worth watching on YouTube.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
prostatecancerfree.org/comp...
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
I really appreciate this information. Thank you. T
55 and prostate cancer - Scared shitless
Newly Diagnosed Prostate Cancer
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Prostate cancer diagnosis 2 weeks ago scheduled for surgery 
