Please welcome Soccer1171

In another thread, Soccer1171 posted the following. Please welcome him to our forum....

Soccer1171 said...
My story. I am 61 years old. 1 year ago my PSA result was 4.7. I had it re-tested and it was now 5.1, Had a biopsy done and it showed 3 tumors with gleason score's of 3+4. Dr. wanted to do radical surgery! I spent a lot of time researching this cancer and asked him a few questions regarding other options. He was did not wavier on his thoughts. I decided to get a second opinion and went to Emory (Atlanta). The dr's were amazing and were more concerned on what I felt instead of telling me what they felt. I told them I did not care if this cancer ever truly left my body. My main focus was my quality of life. Emory did an MRI (which by the way should be the first thing you do) and discovered 6 lesions. The only issue with an MRI is that it cannot detect cancer but you know where to look. I had another biopsy done and they found 1 additional tumor and this one was 4+3. Met with my Dr's and told them I did not want the surgery or the seeds. They did another PSA test and my score dropped to 4.1??? My Dr's could not explain how they were telling me there was more cancer but my PSA score dropped. I had a lot of options to include waiting and watching. I felt I needed to do something. SBRT was the option I decided on. 5 treatments of HIGH dose of radiation. I again did a lot of research and found that 50% of men who have SBRT have some side effects 3-5 years later. I started thinking do I need 5 treatments. I asked my Dr why does everyone do 5? He said that was the outcome of studies they had done. Again, my plan was to knock down my cancer and not concerned about getting rid of it completely. I did not care if I ever had a 0 PSA score. My main focus in the beginning was my sex life but the more I read the more concerned I became of bladder and rectum issues. Not just the short term but also the long term. From the beginning the Dr's told me my tumors were small in size. I decided to do 3 treatments. Dr told me to come back and see him in 3-5 years. He knew exactly what I was looking for. I will always be grateful for that. I realize this is just a quick overview of my last year but if anyone has questions or even comments let me know.

Soccer, welcome to the forum. You’ll find lots of good information as well as support here, if that’s what you are looking for. Keep in mind it can be a bit quiet on the weekends, particularly a holiday weekend, but we are generally fairly active as I’m sure you’ve seen.

If I understand correctly, you’ve done SBRT but only 3 sessions vs the standard 5, and your biopsy showed Gleason 7(4+3) Everyone makes their own choices on this journey, and what each person does is the right choice for them, as long as they educated themselves prior to making those choices. Hopefully, that’s what you’ve done .

I’d be surprised if the Doctors actually agreed that watching and waiting, AKA active surveillance, was a viable option, with a G7(4+3) in your biopsy, that’s not something that most Drs would agree to. But perhaps that’s Something you could have chosen on your own. Probably would have been a bad decision, so glad you didn’t go that route.

If I could make one constructive comment, I’d say you should not wait 3-5 years for a PSA check. You Seem to have said you were not interested in a cure, at the expense of quality of life. It’s not my or anyone’s place to second guess your choices, so I won’t, but fir the sake of quality of life, you don’t want to let things get out of control before you realize it, especially with G7(4+3)

In any case, thanks for posting, and good luck,

Thanks for the replies and advice. A couple of things.

1. I fully respect not only the 4+3 but also the 3+4. What I also fully respect is the Radiation. I believe (for me at least) there is a middle ground when the cancer and radiation go to battle. Would I better off with doing all 5 treatments regarding the cancer? Sure. Would I be better off with 3 and not exposing my body to radiation that is not needed? That is the ultimate question. I firmly believe there is a point of no return on all of this. What are you willing to risk. I asked my Dr. why 5 treatments? He said studies had been done and 5 was the outcome. However, there are different size cancers, different Gleason scores, etc. He knew what I wanted but also knew if he said that is not a good idea, or you will die if you do not have 5!! I would have done the 5. The best thing he told me was that if in 3-5 years (or at anytime) if something needed to be done we could do the SBRT again. He said everything is already set up. I did not realize that. I thought you only had one chance and then you would need to do the surgery.

2. After the 4+3 was discovered active surveillance was not an option. That came at the 11th. hour and after my second biopsy. To be honest if that came back at 3+4 I would have not taken the active surveillance option anyhow. I wanted to do something but was not sure what. From the first day a year ago there was never a sense of urgency from the Dr's to get this done asap. My head was spinning a year ago and I had to slow it down and educated myself on this cancer.

3. I have been consumed with this for a year so I feel pretty educated.. I am not a Dr. but have great one at Emory. The amazing thing is how much has changed in the last 3-5 years in treating Prostate Cancer. Cannot imagine where things will be in 3-5 years from now. A lot of my focus was on that.

4: PSA future testing. I have a question: What score in the future would make you feel you need to do something again or that the radiation was not working? 7? 8? Again, my PSA score dropped form 5.1 to 4.1 after the additional cancer was found. I know the scores go up/down but that is a pretty big drop. I think in the near future there will be a better PSA test or it will be replaced with a new one. Right now I am trusting my Dr. One thing i realized I needed to do: Either get busy living or get busy dying. I am not looking back anymore.

I will leave on this note: What I would tell someone who has just been told he has cancer. Using my numbers as a guide:

1. Ask around and find the best Dr. See if one name keeps coming up.
2: Pick a teaching hospital (like Emory) if possible. They are on the cutting edge on cancer.
3. Get an MRI!! I know they are expense! The MRI cannot tell if the liaisons are cancerous but they can let the Dr. know where to go during the biopsy. That would have saved me from doing a second biopsy.
4. Talk to your family and don't keep it to yourself. You will be amazed how many men are dealing with prostate issues.
5. Trust your Dr. and yourself. This is a big gamble but the final decision is yours.



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Soccer, it seems like you’ve made decisions with your eyes wide open, that’s a good thing. As JNF said, at this point, stay on top of it, that’s all.

Soccer, let’s go onto your question about future potential treatment and when to start.

Since we know that it takes radiation a while to kill the cancer you should regularly monitor your PSA to see if it is reducing as expected. On average, radiation treated men reach the nadir in 44 months. By the textbook, a cancer recurrence is defined when your PSA increases to “nadir plus 2.0” when radiation is the initial treatment. Since you still have your prostate you can expect it to continue to express PSA. A surgical man should be PSA undetectable and when not, it clearly indicates cancer is present and growing. So, let’s assume a man reaches a nadir of 0.50 and then sees the PSA increasing to 1.5 and then stays level. This would not indicate a recurrence and would probably not attract additional treatment, but would continue to regularly test the PSA. But let’s say the PSA continued to increase and passed 2.50. This would indicate growing cancer and would alert the doctors to search for the cancer and begin a treatment protocol that could be local, if warranted, or systemic, if the cancer has spread elsewhere.

So your question about treating when the PSA reached 7 is absolutely incorrect for a man that uses radiation as the primary treatment. If you waited that long it would be nearly certain that the cancer has spread and local treatment would no longer be effective nor curative.

In my opinion, the doctor that said come back in 3-5 years, is not giving good advice and I would not use that doctor. It sounds to me like he is dismissing you as a patient because you did not accept his treatment advice. Frankly, I am surprised he treated you at all. The standard protocol practiced by thousands of docs treating PCA is to start with quarterly PSA tests for at least the first year after initial treatment. I know Emory very well and know many men that have been treated there. I know their protocol is to test PSA quarterly following initial treatment. Since you used a lower radiation dose than universally accepted evidence based radiation protocol, it is even more important that you frequently monitor your PSA. You have a greater probability of cancer recurrence than the man that follows evidence based protocol for the radiation dose. You say you have done a lot of research, so you should know that PSA must be closely monitored following treatment to measure the treatment success and take corrective action early while there is still possibility of a cure if the PSA pattern indicates growing PCa.

You can not turn your back on PCa when you have Gleason 4. It is aggressive, can spread, and can continue to mutate into more aggressive PCa. If you under treat it, you should expect problems. The suggested amount of radiation is not based on the tumor size. It is based on the most effective dose to kill the cells, no matter the volume. I was a high risk with a significant tumor volume as you can see from my signature. I did not receive more radiation than the man that had a much lower volume. We both received the proper amount of radiation dose as has been proven to be most effective and tolerable.

My strongest suggestion for you is to develop a close relationship with a PCa specialist and stay on top of this. Test your PSA quarterly for the foreseeable future to watch the trend. Assuming it reduces and then stabilizes then go to six months and eventually yearly. Due to my initial high risk diagnosis my docs still have me on a regular PSA protocol and always will. I suggest the same for you.

Welcome Soccer, and good luck with your somewhat unusual treatment. ( some of my text bolded for summary or emphasis) It may well work, and if there are signs that it has not, you can jump back on it. In the meantime, just like with AS, maybe start your own research(or not, if that does not interest you) on what you can do, and what you might also be willing to do, to put the odds in your favor going forward. Such as dietary and/or supplement approaches, and exercise, etc.

How is your blood sugar and your spare tire, if you have one? You might want to research what results in high levels of blood insulin(which also tends to result in high triglycerides), considering the fact that diabetics who don't manage to lower their blood insulin levels (preferably with lifestyle changes if possible rather than meds), tend to have worse outcomes with all cancers, including PC. And there has been at least one PCa specific study looking at insulin levels(and/or waist line size) which showed 3 times worse PCa outcomes for those with the highest blood insulin vs lowest, and up to 8 times worse for those with both the highest blood insulin and largest waist to hip ratio, vs the lowest.

And don't be faked out by the fact that diabetics appear to be protected from PCa, and apparently only PCa. That is, protected from ever being diagnosed with it, not protected from a worse outcome once they have it. IMHO, it is not the diabetes that actually protects them, it is THE TREATMENT OF THE DIABETES that protects them. Think about it: men tend to get diagnosed with PCa when they are old. After the PCa has been quietly growing in them for many years. But people tend to get diagnosed with pre diabetes or type 2 diabetes( T2D, a disease of high blood insulin and insulin resistance) at a MUCH younger age. These days, sadly, even as teenagers and children! ( it used to be called "adult onset diabetes", but no more). So what happens if you are diagnosed with T2D, or even just pre diabetes? Right, you get treated for it. And at these early stages, the first thing that is tried is lifestyle changes(like eating way less sugar) that lower blood insulin levels. Or perhaps some drugs that do the same thing, or both. Which leads to years of lower insulin, which is what actually leads to some apparent protection from PCa.

But no one has to wait for an actual diagnosis of pre or out right T2D, to adopt lifestyle changes that will minimize the chance of that diagnosis, or even reverse the disease especially in the early stages. Actions which if taken will probably also be a great help in the battle against PCa, and a multitude of other disease processes.

Keep in mind: you can't just go by an OK blood sugar level. Your sugar can be fine, and yet your blood insulin can be sky high, as such is needed to keep your blood sugar under control, as a high enough sugar can put you in a coma. But that high insulin is doing it's own damage behind the scenes. Doctors don't usually check blood insulin, but triglycerides can serve as a more or less substitute, and is commonly checked.

I didn't mean to be too specific here. I'm just suggesting that beginning a general research on what things- other than outright medical treatment- might put the odds n your favor so that those 3 RT treatments are all you ever need. No guarantees of course, but there are likely things you can do, that you have control over, that will quite likely make your odds worse or better. And you have time- while waiting to see how well your treatment has worked- to investigate all of that admittedly long subject. In the meantime, welcome, and good luck!
Bill

Post Edited (BillyBob@388) : 9/6/2020 3:56:50 PM (GMT-6)

Again, I really appreciate everyone's responses. Let me make this clear again. I am not looking to get rid of this cancer. I know that sounds crazy and not the typical response. As, I said before, i fully respect the 4+3 and 3+4 cancer I have. I focused all my research on the cancer itself and found radiation as a solution. Then!!! I started researching radiation! Wow! I can honestly tell you that I am more fearful of radiation then I am of my cancer.

My plan (and maybe in 3 years I will realize I made the wrong decision) is to use as much radiation as needed to knock down this cancer and give myself another 3-5 years without the radiation drastically changing my everyday life style. Then use a little bit more radiation to give me another few years of life if possible. SBRT is all about high dosage of radiation and everyone's body will react differently. The thing about radiation you will not see or feel the side effects for 3-5 years.

I am just trying to figure out a balance. My life is now all about balance.

To JFN:

My Dr. is amazing!! For you to judge him is wrong!! One thing I hate about these forums. Just crap (unless you are a DR??)!! He knows me very well and knows that I am not coming back every qrt. to run a PSA test. He knows that I am not scare of this cancer anymore. I have been scared for a year but realized it was killing me mentally more than physically. I can already feel the effects of the radiation but to be honest I have never felt anything from the cancer. Think about that. I have had this cancer for at least 3 years now and not one time felt anything. I know. One day it may get me!!! . My Dr. listened to me!! I did not want a Dr. to quote me stats!! . I wanted a DR. who would push the envelope for me. I am not someone who just sits back. I have done my darn research (do some research on the long term side effects 3-5 years after SBRT). I will give you a hint (UCLA).

P.S. He was not dismissing me at all. The truth be told I was stopping at 2! He convinced me to do a 3rd. Does not sound like a Dr. who is dismissing!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just think about this. I know this is true because I am living it. What other cancer can you think of that after1 full year of being diagnosed you can wait to decided which treatment you want to go with (now remember I had one tumor that was 4+3) I do high dosage radiation and now need a PSA test every qrt.?? I am about men having PSA test done. Men at age 40+ should have one done. Just not a big fan of having one done after 3/6 months after radiation.

My goal is a balance in life. I have not had that for awhile. Time to trust God!


Take care everyone.

Soccer, I second Skypilot.

I follow your reasoning, but it appears you are counting that malignant cells that remain viable will remain in the prostate. If that is the case, you'll be OK, because no one dies from prostate-confined cancer! However, giving these cells longer life means that the risk of progression to metastatic cancer will remain.

The circulating tumor cells (CTC) that are produced by prostate-confined cancer have an extremely difficult time establishing themselves in other tissue or organs, which, fortunately, is why so many men do not have metastatic prostate cancer (mPCa) at diagnosis. Micromet formation appears not to be the result of cancer cells that "escape" from the prostate, but rather a genetic change in the CTC that makes it possible for them to grow in what was previously "hostile" tissue outside the prostate.

If your total radiation dose is insufficient, future treatment may need to augment additional radiation with ADT to treat what has become mPCa.

Djin

Everyone has their own "comfort level" as it relates to treating their PCa, and that forms the basis for choosing which treatment protocol they pursue. Efficacy of the treatment vs. the side effects from them is one of the factors you use in your decision. That said, there's no side effects from getting your blood drawn every quarter. It's the one marker you have that will tell you whether your treatment worked or not.

I came on this forum to get informed and to hear about other men's thoughts regarding this cancer.

There will always be someone who just cannot hold back!! I do not need any luck and my attitude is that I will beat this cancer. Might not be in the way everyone agrees with but I have done my research. I know I am pushing the envelope.

Everyone has convinced me that PSA testing would be a good idea. I really appreciate that. To be honest that is exactly why I joined this forum. You guys have been through this and I just finished.

On a side note: My gut feeling is that my dr. office would have been contacting me about future PSA testing. I might have miss-understood what he was saying or he was just giving some time to adjust to everything. He knows me pretty well.

Question: How long should I wait? and what would I expect my score to be if the radiation is taking hold or working? My last test was 4.1.

Soccer, welcome to our little club. To answer your last question--standard of care is to do quarterly PSAs after treatment for at least a couple of years. JNF above noted that the median time for radiation patients to reach nadir is 44 months--almost 4 years. IMO, you need quarterly tests for long enough to establish the trendline--at least a year or more (4-6 tests).

It's a blood test, it takes 10 minutes at labcorp.

I'm a surgery patient, who achieved non-detectable at 3 months. I still had quarterly tests for a year, then every 6 months until year 5..and now I'm on annual.

The only way to know if the cancer is stopped--or progressing--is to do tests. I can also say, unequivocally, that PCa is not a pleasant way to go. I watched my father go that way, with spinal metastasis from the primary.