New Diagnosis
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Find a dr you trust, who doesn’t sugar coat things or pressure you to perform only what he/she does, and gives you statistics on why they recommend what they did. Like others here, I got ahold of Dr Mark Schulz’s book and watched his YouTube videos. I contacted someone on his panel who recommended brachytherapy, and they basically said they would only trust Dr Frank with MD Anderson or else some hospitals on the west coast. Two months later I’m in Dr Frank’s office, mid July I got brachytherapy. I won’t say that’s what you should do; I will say that it’s a shame that most of these dr’s and hospitals seems to have an angle based upon what they do , and sadly, what is most profitable. Hang in there, keep asking questions.
CoolDady
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Thanks for jumping in Old Salt, hope you are well. I am not clear on how to determine what type of MRI was done, document references Multiplaner T1-T2. It seems odd that the MRI was clear except for the known Grade 6 lesion, how were the other hits missed by MRI? I have heard that MRI's are quite accurate. I do think PSMA PET will tell all, perhaps there is more in the gland. I agree the Cyberknife is faster, and while proton does not have lots of data they claim less radiation in surrounding areas, and as you say cost is a big difference. I see conflicting data on ED , some say its 50/50 some say worse. I do know I am not interested in RP, I hear too many bad stories, radiation seems like a better choice ( among those available ). I am just turning 68 my dad died of PC at 72 , I am wondering if he was in the same place physically but the technology was not available to detect it. Thanks again I will post my progress!
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Thanks CoolDady, I do think ED is at least a 50/50 likelihood for me. I am 68 and in pretty good shape 26 BMI and exercise 90 minutes a day but when someone says its 50/50 in this business I automatically think it is 40/60, lots of exaggeration and seemingly doctors who don't want to face reality. I have changed Urologists once and my current one is pretty direct. So far has your brachytherapy been acceptable? are side effects acceptable?
Once I get PET Scan I will post an update, thanks for your interest, I had become comfortable with grade 6 never changing!
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Hey @neilm, sorry you are having to move to treatment. Without doing the math on your current situation, you are coming up Favorable Intermediate Risk, I think. In which case they'll recommend radiation as a monotherapy. You should be able to beat the PCa into submission for a good long while, if not all the way to the finish line.
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Hi,
Concerning danno99 comment “The SBRT radiation beam dose is very low as it enters the body but when entering the prostate is very high. Once the beam exits the prostate and makes its way out of the body the dose drops off acutely”. How does that work? It does not make sense that a beam of radiation would be low dose while entering then miraculously speed up once into the Prostate then reduce intensity after it leaves the Prostate? Its a beam of radiation, what makes sense is that the radiation beam would lose some intensity as it passes through body tissues along its path.
Dave 3+4
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Must be referring to Proton Therapy, which does have the magical property of dumping its energy in a small locale. There hasn't been a big benefit shown from it yet, though.
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I had 26 rounds of proton radiation at the Mayo Clinic this past May/June. In reference to the ED I was put on hormone treatment 6 months prior to my radiation. I got another 6 month dose in June. That alone has a direct impact on ED. I am surprised that you are not on it with upcoming radiation. Testosterone to prostate cancer is like gasoline on a fire the hormone treatment kills the testosterone
The PET scan needs to be done before treatment to help determine if the cancer has matastasized so they can formulate a comprehensive treatment plan. Insurance covered my entire proton radiation treatment. My scan showed the cancer had spreading a couple surrounding lymph nodes.
I talked with one of the local oncologists and the also talked to the Mayo Clinic. After those discussions I decide the Mayo was best for me. Someone said it earlier to talk to multiple Doctors and would certainly agree with that.
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Hi Clevelandguy
I'm not a doctor....Not sure where I got that information or when I said it??....however,
Proton beam radiation is a low dose of radiation that works. I know of one person (from Seattle) that had it and Yes his outcome is Unbelievable. He is a friend of mine and his first name is Dave. His psa prior to treatment was the same as mine. He has no issues what so ever. His insurance paid for and he went for treatment 42 days. Treatment now is 21/22 sessions. Cost for a Canadian is 100k USD. I think Americans pay 1/2 that. I was at one time seriously considering this treatment. I got the $ put aside to do last Jan & then things changed...my referral to Ottawa General Hospital got accepted.
Fast forward, I had 3 trips to Ottawa this year for treatment. I chose the next best thing to Proton (IMO) Cyberknife or commonly referred to as SBRT. The short version.
Prior to first trip, I was on Global News & they put story all across Canada. I had many emails, fb requests and messages on our phone line
First Trip...Feb 6...involved MRI/Biopsy/Radiation Simulations/Gold fiducial placements/Tattoo placements and further sophisticated MRI imaging/pelvic X-ray
In Meantime, 5 radiation (high) treatments were booked in March....however, 2 weeks later....oncologist phoned stating no cancer...therefore, treatments were cancelled. I asked, Now what with rising psa?? He said, cancer went outside prostate....so his recommendation was PSMA-PET scan. He booked another biopsy for June 1...
PSMA-Pet was done on April 20 & another MRI done on April 25. Pathology of Pet showed cancer on left and right contained in prostate. I talked to the doctor personally and she confirmed slides that showed cancer was there.
Second trip to Ottawa (June 1st) dealt with another biopsy. As you know, biopsies are not conclusive and yes 40% of biopsies, the doctor performing using 3T-MRI Trans Rectal.....misses the target. That doctor whom performed my last biopsy, she did not miss the target. She compared both MRI's and noticed differences. She took 15 samples. Pathology came back showing cancer contained in prostate in 8 out of 15 samples.
Third trip....Treatment....Started on June 26 at Ottawa General Hospital and last treatment was July 6. There were a total of 5 treatments lasting 45minutes to one hour. It was high radiation. Oncologist drafted out where to do radiation. Good cells were left alone. It was important to do enema before each treatment and to drink water to keep bladder full prior to radiation. I found out on my own that 600-650ml was the correct amount and it was better to drink 1/2 hour prior to treatment.
Now afterwards...a slight pain which went away within a few days. Trouble peeing with irritation. I took Flowmax for one month. All good now. No issues...no bleeding from urine or stool...no erection problems...no intimate problems...no problems what so ever.
Going forward, my oncologist in Ottawa said....I will no longer have prostate problems & will not die from prostate cancer. He said, do psa after 3 months. That will be Oct.6. BTW....psa prior to SBRT was 7 and one year ago was 3.4. Oncologist said, psa will drop to under 1 in 3 months and continue to drop every 6 months. It will drop to its lowest value within 2 years. They call that nadir psa....its lowest level.
Concerning Neil situation. His numbers are very similar to mine. If I was him....and insurance pays for, I would do proton simply because it is a lower radiation then SBRT. I'm not going to BEAT this post to Death and say, you said this and that! I'm done with that.!!! What I am is extremely grateful that I was able to get SBRT (Cyberknife done in Canada). These machines cost 8-10M Canadian Dollars. There are only 3 provinces that have them...One in Alberta, one in Ottawa and 2 in Quebec. I could not get a referral to Alberta because of Covid and they were not taking out of province patients. It was very very difficult for me to get referred to Ottawa. My HIFU failed! I had that done on Nov.22/2020 from a surgeon in Toronto. It worked for just under 2 years.. up to .(Aug/2022) and then recurrence happened. I noticed psa rising. Sept/2022 after talking to surgeon whom performed HIFU, I requested referral to Ottawa General Hospital for treatment with SBRT.
You have to be your own advocate!! Only you can make it happen....no one else! My advice....do your research and decide what is BEST for you!!!
Best to you Neil...I know you will make the right decision for you
Hope this helps everyone!
Danno out
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I think the theory of radiation application is like a magnifying glass, the radiation enters a large geography on the body but is aimed at a tiny spot where it all comes together. So any spot on the entry point between the tumor and the skin has a lower exposure than the tumor.
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I am not disagreeing with you on the hormone injections, however, I never heard of hormone injections prior to treatment...Interesting! My oncologist wanted to do hormone injections (two) times after treatment. I was aware that the injections kills testosterone which feeds cancer in prostate. What got me interested in SBRT (Cyberknife) was a friend of mine in Long Island NYC. His name is Scott and he had SBRT with no issues. I asked him about the Hormone injections after treatment. He said, Don't do it! He also stated, from what he heard, the side effects are tough from the hormone therapy and to be avoided unless absolutely necessary. If cancer was Grade 3, Gleason 8....I would have done Hormone therapy for sure....Just saying that's all. My cancer is 2C, cancer contained in prostate on left/right and Gleason 7. I term that Intermediate....A big difference....so my answer is it all depends. I still want as much; Quality of Life that a man deserves....yes....that includes Sex!....but that's me.....everyone is different....Some just want it gone.....Believe me I get it..
Further, I have another friend in North Bay Ontario and his name is Boots. Met him through Harley's & riding. He has gone through colon cancer & got it removed 5 years ago...He is cancer free on colon and beat it, however, through my Ottawa treatment we have been communicating back/forth. His psa started to rise...Two weeks ago, he emailed me stating through consultation of oncologist/urologist he decided to get prostate removed on Sept.5 this year. Its like I said; Everyone's decision is personal and there is no right/wrong decision. It's tough!
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Hi Neilm,
What you describe as far as the beam pattern might fit for Proton radiation which has a fixed focal length. Cyberknife is a beam that goes through your body, thats why they use the gel between your Prostate and Rectum to absorb that extra radiation lessening the damage to your Rectum. Both Proton and Cyberknife are very good radiation treatments with great effectiveness. Just want people who come here to get info on the various treatment types as accurately as possible.
Dave 3-4
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I never had gel, however my friend in Long Island (NYC) did have gel....Just saying...that's all. After Cyberknife treatment, I never had any bowel problems...No bleeding and no diarrhea. I was apprehensive on taking a pee and the same with a stool sample relief. Within 3-4 hours I had a normal stool sample. What I found that worked was drinking allot of water after each treatment. Obviously high radiation will produce heat, irritation, swelling, slight discomfort down there and a little apprehension/anxiety as to speak. to lessen that, I filled up bladder as much as possible to cool things down and force myself to urinate. It worked for me!
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For low-grade prostate cancer, radiation is a valid, well documented, form of therapy. Both SBRT and proton therapy can be used for a case such as this one. Brachytherapy and IMRT are other possibilities. Side effects are possible, but in most cases resolve with time.
The recommendations regarding ADT ('hormone therapy') have changed over time for low to intermediate risk patients. Here is the current advice from the American Urological Association:
In patients with low- or favorable intermediate-risk prostate cancer electing radiation therapy, clinicians should not routinely use ADT. (Moderate Recommendation; Evidence Level: Grade B)
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