I am coming on 2 years since my RP with lymph node dissection and left nerve spared. It is 8/22/18. I also am celebrating 15 years on 8/23/18 since my aorta dissected. I have a lot to be thankful for. My PC discovery was a miracle in and of itself, if I had not had to have my hip replaced (3rd) attempt, I would probably for sure be way worse off.
So, I had the RP and after my first couple of PSA tests, it came back:
IDDatePSA ScoreLocation of TestComment
10/12/2016 <0.015Dr. Porters OfficeLab Corp
2/15/2017. <0.015Dr. Porters OfficeLab Corp
2/2018 0.009Dr. Porters OfficeLab Corp
3/16/2018 0.008Dr. Porters OfficeLab Corp
8/9/2018 0.014Dr. Porters OfficeLab Corp
Fast forward to today. After I got my last PSA result of 0.014, I began to realize that I still have PC cancer as I thought the RP would remove it. Now, my mind is in overdrive and thinking that "oh... OK.. it's official, you now have a death sentence" and have "x" number of years left. However, I am a Christian and play competitive tennis for my age group (55's) and I am not going to give up on my faith.
My original Urologist said, your psa is still low, lets continue the 3 month plan still. However, I must have pissed him off that he said and did book me an appointment with a Radiation Oncologist. Which, I have decided that I am going to wait on. I have tried to take matters in my own hand and have several appointments coming up. My first one is with one of the top Oncologists at Seattle cancer care alliance Dr. Yu. That is on the 29th of this month. Then, I am going back to where I originally had my biopsy, Virigina Mason and seeing my original urologist Dr. Coreman and then on the same day 9/6 I have an appointment with the head of Radiation Oncology. Dr. K.
One thing that I am struggling with is where to get the treatment? What type of treatment? Does one place have a better radiation machine?
From what I have gathered, there's quite a few great places in the Seattle area to get the care. My gut is leading my back to Virginia Mason, where I had my hip replaced as they seem to have studies about their PC success long term rate.
I can't stop thinking about my new diagnosis and it seems to be on my min 7*24, in fact, today we are meeting my mom for her b-day celebration and ironically my father just has a Pelvice MRI yesterday as his PSA (80 years) was like 7. But, I can't let this run my life. I guess what is really the issue is it seems now for sure, I am going to die. But... prior to PC, I thought I only had 5 years after my aorta dissected. But, I took action and said, fight back. I started a website, aorticdissection.com and now have almost 600 stories from all over the world. I am also journaling on my other site, briantinsley.com and help me through this next adventure of PC cancer.
God Bless,
Brian
Written by
tennis23
To view profiles and participate in discussions please or .
I just got a reply from one of my Urologist tennis buddies a few moments ago about my situation as I had asked him what he would do. He said:
I cannot give patient care advice by email.
Common present day positions:
The PSA cutpoint used to be 0.4, then the assay became ultra sensitive and measured down to < 0.1. then it became even more sensitive to the numbers you see now.
It may be that some men have levels < 0.1 or 0.2 that then never go up over time (False Positives as they say). (I have seen this)
It is also believed that if you radiate someone after surgery with a PSA of 0.1- 0.2 there is no difference in success than if it was 0.05 or even lower.
Dr Yu makes sense, some even use 0.2 - 0.3 prior to considering any additional treatment.
If you want another opinion you can get an appt with one of the urologists at UWMC or Virginia Mason who do prostate cancer surgery.
That is all I can do for you, but should be helpful.
This was part of Dr Myers protocol. Avodart reduces DHT levels ; Pca has a greater affinity for the DHT form than T. Dr investigated why diabetics taking metformin had a lower incidence of Pca - subsequent studies showed its benefits. There are many members proficient with pharmacology that can explain the details.
Vitamin d is controversial right now. Dr Myers monitored it monthly trying to keep results mid normal
Your PSA is still too low to pull the trigger on salvage radiation. Even if you had adverse pathology, PSA below 0.03 ng/ml are NOT associated with progression. I agree with your Uro that waiting for 3 months for another test is prudent.
Ok Tall Allen, thanks for replying to my email post. I TRULY appreciate it very much. I just need to continue to live my life in these 3 month increments. Granted, I am used to 6 months having to have an Echo Cardiogram and every year a CT/Angio to keep track of my aorta and aortic valve. I appreciate it, I wish you the best. Brian
I must agree with Tall Allen. Slow down. With such a low PSA there is lot that can be done. And your death sentence will probably not PC but come from one of the other used up parts in your body that you mentioned.
In the mean time there is a lot that YOU can do. Change your diet, Eat stuff that work against PC, stop eating the stuff that promotes it. Climb on the internet and arm yourself with knowledge about a good cancer diet, herbs. And live a positive life, thank God for every day.
Thanks for the great advice just got out of church. My plan of changing my diet is in place and I will see what other recommendations I can find too! Brian👍
Dear Tennis 23, the overriding factor in your case is that your PSA seems to be stable at around 0.008 to 0.014 over the five PSA tests from 2016 to 2018. As your PSA appears to be stable then present thinking is not to undergo radiotherapy, but, watchful waiting is the way forward. If in the future your PSA starts to double over a three month period then your oncologist will then assess you and then recommend a course of action for you.
I wish you all the best tennis23 in fighting this bastard. Everybody is different with varying degree of body strength and tumor burden. There will be a lot of people who will disagree on what I write next so I suggest that you as an Oncologist the benefit of an ultra sensitive PSA test. Other than the obvious benefit post surgery to the surgeon, I can find no redeeming value other than to increase worry. Essentially, your PSA is >0.1, which is considered undetectable by most Prostate Cancer Medical Oncologists and Prostate Cancer communities. Just make sure that you have a baseline nuclear bone scan and soft tissue; along with periodic repeats to monitor for metastatic disease.
I really am so GLAD I found this site. It is a TRUE JOY to have such a great tool to get others to emphasize with your situation and provide thoughtful and careful advice. My original reaction to my 0.014 was panic, worse case scenario, the thought of having PC and feeling like things were not good. Ironically, my father who I had dinner with last night as well as his wife and my mom, they are 54 years being married. My dad is 80 and just had his MultiParimetric MRI and they did see a small area of concern. After he gets back going to Buptapest (sp) in 21 days, he is going to get a MRI guided biopsy to see what is going on.
I am going to stick with my original surgeon's advice and keep an eye on it and he's set me up with an appointment with on of the top Radiation Oncologist to have as a placeholder if I did need the salvage radiation. It's amazing how we can or at least I panicked and now had a chance to reflect and realize that my Urologist and the Swedish Cancer Institute is one of the best places to get care for in the Pacific Northwest, Seattle. WA.
Again, thanks to everyone here, I thank you from the bottom of my heart, joy to everyone.
I am going to be meeting with ironically the same Radiation Oncologist that has just diagnosed my father (79) . You can read my blog post today at briantinsley.com and I feel finally at some peace as far as next steps. I had emailed this guy at 21co.com and got an email today basically stating in essence stating I should seek a radiation oncologist for care. The person he referred me to was the same guy my dad is currently seeking. My dad said he did mention my situation and that he (Dr. Alex Hsi) said to most likely keep it monitored. I am scheduled to meet with Dr. Hsi on 9/6 just in case I ever do need treatment and that my PSA is actually rising. I feel much better about my future and a since of relief. Thanks a million! Brian
my friend has an ultrasensitive PSA level of 0.023, is getting tested again in 3 months and is talking to an oncologist at Stanford just to get things ready. the upward trend is not good but it can halt I hope for all of us including myself with an ultrasensitive PSA level > 0.005.
After doing more researching, I discovered this video today referencing this new type of PETSCAN that appears to be able to detect the small psa amounts and produce them on the PETSCAN and that would allow for the radiation to be targeted. I have wondered about the actual salvage radiation and where they "radiate" as they really have no idea where to do it. But, this PETSCAN appears to be able to identify it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Just finished first meeting with radiation oncologist. What he proposed as next steps
Hoping for a cure --Oligometastic disease, third time
25+ Plus years but now on Lupron
PC treatment question
Rising post-RP PSA. How long to wait before SRT?
