My Journey Begins, Cancer and Medicare, Maybe this will help some others one day

[Triple_Se7en]

For a while I was on Tamsulosin, it really didnt do much and think I stopped taking it.
Recently from 2023 I was on Finasteride and was a big help but it takes about up to a few months to reduce the size of your prostate.
I have read studies (if that is why you are asking) to see if Finasteride increases the odds of aggressive cancer (or just cancer) I dont think anything solid was found but I haven't followed up.

The problem with Finasteride for me personally was the Dr prescribed it to see if my PSA would go from 15 to around 8. He knows I wanted a biopsy but he said let's see in six months where we are. Well it didnt come in at 8 it was like 9.5 and I reminded him, he said well it's close to 8 and he talked me into waiting another 6 months. Well, it then went to 11.5 and once again, he said, well, if you want a biopsy we can do one or wait ANOTHER SIX MONTHS! I said I WANT a biopsy! GEEZ!
Biopsy showed cancer.

Here is why I am REALLY upset though. When I did the Duke Cancer Clinic consultation (in this thread) ALL three specialists were ALARMED at my high PSA. THEY TOLD ME MY 11.5 HAD TO BE DOUBLED TO 23 BECAUSE THE FINASTERIDE LOWERS THE TRUE PSA BY 50%.... All of a sudden I was labeled a high risk case with favorable outcome. PSMA PETSCAN a month later had me changed to Intermediate risk (no spread was found) BUT unfavorable outcome because they can not explain the high PSA for the small amount of Cancer. Pretty much both the above puts me into a GRADE 3 cancer group it's the better of the grade 3s called 3A.
Grade 3B abd Grade 3C get tricky and Grade 4, well ... enough said.

This is why I tell everyone, be proactive with your doctor. If he gives you the option of a biopsy do it. Better safe than sorry. It's kind of a brutal procedure HOWEVER it's over in 15 minutes or so and you can drive yourself home. At least I always did. I have 4 of them over 7 years. Only the first one did they put me to sleep. I dont think that they do that anymore.

I took a total of only eight Finasteride pills (out of 60) and stopped it immediately after reading about it's high cancer risk.
I've been on Tamsulosin for around 2-3 weeks now and it's meant to be a lifetime-remaining drug, since it treats the Prostate totally different. That makes me nervous as heck and I doubt I'll stick with it for years.

 

[alarmguy]

I took a total of only eight Finasteride pills (out of 60) and stopped it immediately after reading about it's high cancer risk.
I've been on Tamsulosin for around 2-3 weeks now and it's meant to be a lifetime-remaining drug, since it treats the Prostate totally different. That makes me nervous as heck and I doubt I'll stick with it for years.

I knew that is why you were asking and why I bought up the cancer thing. I dont know except it was very effective however it takes 3 to 6 months for it to be effective. It actually shrinks the gland. It denies it of something and it shrinks.
MANY years ago 5?) ish? I dont know one doctor suggested Finasteride and I was already taking Tamsulosin. I read about the Finasteride and decided against it. (kind of like you)
However Around 2022/2023 when we moved to the new home. I took my new doctors advice and tried the Finasteride again. It REALLY did make a world of difference once 4ish months went by. Did it have anything to do with my cancer? No one can say, however I have had fluctuations of PSAs from a low of 4.7 in 2017 to as hi as 21 during an infection and NEVER dropped below 8 so something was going on. IF you didnt read I had a total of 4 biopsies in 7 years. LASt one was when cancer was found.

The one key point to keep in mind is if going over your PSA with your doctor and you do take Finasteride, ask him if that means your PSA level result needs to be doubled.

Mine did, confirmed by DUKE and my Local network here. Somehow I think my doctor missed it. 11.5 on Finasteride in my case meant a true number of 23 ... and alarms bells went off because they cant understand why so high with the small amount the biopsy showed and threw me into "unfavorable" outcome after a PETSCAN even though the scan showed everything except the prostate clean.

 

[Triple_Se7en]

Mind if I ask?...... what was your infection in 2021?
Thanks for the in-depth reply.

 

[alarmguy]

Mind if I ask?...... what was your infection in 2021?
Thanks for the in-depth reply.

Standard UTI if you can call that standard for men. Meaning I had the infection, was given crypto and cleared right up. PAINFUL when urinating. The thing was at the time I had my standard PSA test done within a week or two after by another doctor. They pretty much agreed that it was too soon after the infection because it would have caused the PSA to rise that high. At the time I wasn't taking Finasteride so it was a true 20. It did drop down to 15 some time later (I'm talking in rough numbers based on memory without going into "Mychart" to look it all up.

 

[alarmguy]

Get a kick out of this. Both my appointments for Monday and Tuesday have been cancelled!!! The radiation machine is broken! I was so upset, still am. My doctor calmed me down. Parts were being flown in Tuesday and should be ready Wed.
I was freaking out about having a 4 day break in radiation, 2 days because the weekend and now 2 days for a broken machine. I feel like the dark ages here on the coast. Staff and my doctor is great, darn equipment though? I dont know, maybe it happens? But why now? I only had to go for 6 weeks. So now those days will be added on the end. Im more nervous about the 4 day break, assuming it's back up on Wed. I mean we are trying to kill cancer here. My doctor seems fine with it...and to his credit he called me back right after I spoke to his nurse.

 

[panthermike]

Get a kick out of this. Both my appointments for Monday and Tuesday have been cancelled!!! The radiation machine is broken! I was so upset, still am. My doctor calmed me down. Parts were being flown in Tuesday and should be ready Wed.
I was freaking out about having a 4 day break in radiation, 2 days because the weekend and now 2 days for a broken machine. I feel like the dark ages here on the coast. Staff and my doctor is great, darn equipment though? I dont know, maybe it happens? But why now? I only had to go for 6 weeks. So now those days will be added on the end. Im more nervous about the 4 day break, assuming it's back up on Wed. I mean we are trying to kill cancer here. My doctor seems fine with it...and to his credit he called me back right after I spoke to his nurse.

Understand your frustrations! I would try not to worry though, fairly common to have machine issues from time to time on these. They're generally reliable but have so many parts that have to work together to do what they do.

As far as the break, it's not too big of a deal. The biological effectiveness is still there, as long as the break isn't overly long. Worst case scenarios for LONG breaks, they may (not common) add an additional treatment. Oftentimes, not necessary though

 

[alarmguy]

Understand your frustrations! I would try not to worry though, fairly common to have machine issues from time to time on these. They're generally reliable but have so many parts that have to work together to do what they do.

As far as the break, it's not too big of a deal. The biological effectiveness is still there, as long as the break isn't overly long. Worst case scenarios for LONG breaks, they may (not common) add an additional treatment. Oftentimes, not necessary though

Thanks for your reply. It seems like you have some knowledge of the subject.
I’m all good now as well. I wasn’t aware of these things can and do breakdown. I get it they are machines, but I just figured maintenance and such were done in off hours.

My doctor reassured me yesterday but today the radiation doctor that I see once a week said the same thing after my treatment today.
Two days would not be unusual, and if it was longer, they have other contingencies among all the different machines in the network if it is ever necessary.
They adjusted my schedule and added two days on to the end of treatment.

Eight more days to go! I’m definitely feeling the effects of radiation.

I appreciate you chiming in on the subject!

 

[panthermike]

Hey that's great to hear sounds like they're really taking care of you and you have a good team! Didn't realize you were so far into treatment catching up on this thread. Sounds like you're doing really well All things considered

 

[alarmguy]

Hey that's great to hear sounds like they're really taking care of you and you have a good team! Didn't realize you were so far into treatment catching up on this thread. Sounds like you're doing really well All things considered

Thanks!
Yes, 6 weeks of 5 days per week. (minus 2 days) 28 treatments.

As far as a "team" first let me say this.

My main radiation oncologist was great, REALLY. Wife insists the same. He was referred to us by a few doctors up at Duke.
However I was offered the option of not driving 1 hour each way for the radiation treatments and get those at another place in Novants network, 23 minutes from my home. He told me my treatment would be exactly the same, only my weekly meetings during radiation would be with his associate. All he really does is make sure my side effects, stuff like that are going ok and offer things that could help. SO that is ok and I took that offer. He also offered if I ever change my mind and want to go back to the main center where he is, I get one free pass because the programming has to be redone for my treatment. SO that was very cool but I am happy where I am.

The staff at the local cancer center are really as wonderful I think as I could expect. Really great people. I mean you really get to know each other from the second I walk in the door the ladies at the window are saying hi by my first name and checking me in. I go to sit in a chair and literally almost all the time within minutes or less, a radiologist walks out from the back, calls my name to bring me back. Great people I actually enjoy going there. 4 weeks later, the side effects on me leaving I almost feel within 10 minutes if that long driving home. At first I never felt anything.

With all that said, my disappointment maybe with everything is I feel like "team" isnt really there. More like fragments of individual departments. I spoke with my main radiation oncologist on the phone when the machines broke, the one referred by Duke. Im pretty much done with him. I'll never see him again, meaning the treatment prescribed and weekly follow ups have been with his associate and once done with the treatments I wont see him again.

SO then there is the medical oncologist that I only met one time, he will follow up with me as far as the medication Orgovyx that I am taking. I see him again in April along with a full blood work up to see how things are going on the drug. From there I dont know what else.
To be clear, maybe part of the "fragmentation" I feel is just a lack of a central office coordinating everything. Feels a bit like an assembly line. Part of that can also be my fault because I do not want to continue to be a patient of primary urologist. He really missed the boat on this whole thing and it was me who insisted on a Biopsy, 6 months earlier he talked me out of one and I would have had it sooner. As it was he still wasnt sure if I needed one but he did it because I wanted it done.
SO anyway, along the coast here, it can be a challenge finding a doctor. Keep in mind we moved here in 2023 so didnt give me much time to figure things out here only to find out I had cancer.

So once done with radiology, I will never see these doctors or team again, Ill be in the care of a medical oncologist for follow ups while on this drug OR my main urologist that I do not want anymore. Either one of them can do the follow ups. Im unsure what to do, except for now will follow up with the medical oncologist and decide on the other.

One saving grace is my main oncologist not the phone the other day DID SAY that someone will be following up with me once my radiation ends and they will regularly meet with me or a group and as time goes on less frequently. So maybe there is a "team" but it's never been explained to me. Wow, long post. I am famous for that. Hope it makes sense. Still morning coffee and ...

 

[alarmguy]

@panthermike I added a much of stuff to the above post *LOL*
thanks again for your posts.

 

[panthermike]

Your experience mirrors what I hear a lot from many of my patients. They love aspects of their care and/or certain teams but feel that others are lacking. Oftentimes and unfortunately with *most* places out there, it is a huge "machine". Sadly, many patients feel that they are just a number and revenue for the facility. There not all like this; I worked at Mayo Clinic for almost 10 years and overall, they do a good job making the patient feel like their needs are priority; despite being hugely profitable.

I agree with you though, overall the process, implementation, and continuity could be vastly improved. I hope that it is not an arduous task for you to find a good follow up plan. Are they going to check your PSA after several months post-treatment or do a scan? Just curious, different facilities may do things a little bit differently.

 

[alarmguy]

Your experience mirrors what I hear a lot from many of my patients. They love aspects of their care and/or certain teams but feel that others are lacking. Oftentimes and unfortunately with *most* places out there, it is a huge "machine". Sadly, many patients feel that they are just a number and revenue for the facility. There not all like this; I worked at Mayo Clinic for almost 10 years and overall, they do a good job making the patient feel like their needs are priority; despite being hugely profitable.

I agree with you though, overall the process, implementation, and continuity could be vastly improved. I hope that it is not an arduous task for you to find a good follow up plan. Are they going to check your PSA after several months post-treatment or do a scan? Just curious, different facilities may do things a little bit differently.

You have no idea how helpful your posts and questions are. They give me things to think of and ask the doctors. Thank you
I see the you understand what I wrote. Yes, the people I have dealt with are wonderful. But I am like a person on an assembly line. Once I pass by them and they do what they have to I never see them or have anyone watching over what comes next. Nothing has ever been told to me, yet I think there is something but I just dont know it yet.

Ok, as far as follow ups. Well, yes, I am sure PSA 3 months after radiation ends and maybe every 3 or 6 months after. My radiation oncologist mentioned to me on the phone they like to see a PSA of .1 but possibly a short term peak of .2 after stopping orgovyx. I am sure that is what he said on the phone and yet I am never going to see him again.

My primary urologist (the one that I want to switch away from) wanted me to call in my radiation schedule so he could schedule the 3 month follow up. He told me to make sure to call his office, it sounded like he wanted to be the one. I have not.

The medical oncologist that I only saw one time, at that time did a full blood work up before radiation I was impressed by the depth of the workup, not sure I ever saw so many things tested.

My PSA dropped down to 3.61 after taking Orgovyx for two only weeks. Previous was 11.5 while on Finasteride
Testosterone was down to 20. (!!!) he suspected it would be near zero which I take it 20 is "zero" in the way I was talking (hot flashes etc)

He seemed like a nice enough guy to my wife. I dont know, maybe I was spoiled from my Duke meeting when that oncologist was specific for prostate and cancers down there. Anyway to his credit, at the same time I do have another follow up with him at the end of April. Which is about a month after my radiation is ending, he also has another blood work up scheduled before I meet with him. So I am thinking, maybe this is the Dr I want to keep seeing ???? Thinking about it he seems to proactive and complete?
Would it make sense, to keep seeing a medical oncologist for best care? I think so? I assume he will be with me then for the entire course of Orgovyx and unlike my regular urologist he specializes in cancer. May regular one states his interest is kidney stones etc *LOL*

I value any thoughts.
@panthermike I put this and edited many times between interruptions at home

 

[panthermike]

Anytime! Happy to help in anyway I can. The whole process is overwhelming and just so much information to digest.

Yes, it is very common to follow up maybe once with your Radiation Oncologist and then keep following up/monitoring with Med Onc. I do like that he seems to be thorough w/ follow ups and the ordering of blood work. Once you've established a low PSA; typical plan would involve testing around yearly to monitor. You may never see the radiation oncologist again after you've completed your treatment course. Pretty typical in this way. If you had problems in the future(sincerely hope you don't), then the Rad onc still wouldn't be involved as Radiation is not on the table anymore(all organs and parts of the body have a lifetime dose).

You have had some good results just from the Orgovyx! I'm hopeful that you will have a good outcome sir . Radiation does have limitations, but generally is quite effective with prostate treatment.

 

[alarmguy]

Anytime! Happy to help in anyway I can. The whole process is overwhelming and just so much information to digest.

Yes, it is very common to follow up maybe once with your Radiation Oncologist and then keep following up/monitoring with Med Onc. I do like that he seems to be thorough w/ follow ups and the ordering of blood work. Once you've established a low PSA; typical plan would involve testing around yearly to monitor. You may never see the radiation oncologist again after you've completed your treatment course. Pretty typical in this way. If you had problems in the future(sincerely hope you don't), then the Rad onc still wouldn't be involved as Radiation is not on the table anymore(all organs and parts of the body have a lifetime dose).

You have had some good results just from the Orgovyx! I'm hopeful that you will have a good outcome sir . Radiation does have limitations, but generally is quite effective with prostate treatment.

Thanks of your feedback, always welcomed! I did see you mention another PSMA pet scan down the road. I'll ask the medical oncologist about that.
I suspect it might not be "covered" if PSMA is where it is supposed to be? But now that you mentioned those words. I will bring it up in the future with any doctors related to this cancer in case they agree or can make it happen with insurance. I have no problems getting tested for anything if it is an accepted practice.

Yeah, that is the scary part, once radiated and no option for more. I know someone who is in that situation. About 8 years back, radiation. Cancer is now back, in lymph nodes. Depending on treatment or do nothing, as little as 3 year prediction to live or possible much longer, with a combo hormone therapy as well as some new trials out.

Not sure if you saw all my posts. Robotic wasnt a solid option for me, it would have been incision and a 20% chance that the operation would not be able to be carried out after opening me up. Due to heavy scarring from not one but two appendix surgeries when I was young. I was so infected they never used stitches, they had to keep me opened up and two weeks later make another incision. This is was dark ages in 1964. Doctor told my wife only god knew if I would live.

With that said, the oncologists from both the networks, Duke and Novant say the 15 year survival rate (90%) in the same and 25% of surgical removals ultimately one day need radiation. He felt the rate for a reoccurrence is less with radiation, assuming I dont get another cancer from the radiation. I know it is more focused now with the new machines and some doctors prefer the method. I will admit I was concerned also with incontinence which the rate is higher with surgery.
Not that it matters but my radiation oncologist says I will be considered cured, I will have no cancer when he is done. Im sure he was relying on the PSMA Pet SCAN showing no spread and still encapsulated... I know there is no guarantees though.

ok, got to get to treatment soon.

 

[panthermike]

Pet scan isn't always common practice with Prostate, as many still use the PSA as the gold standard, which is fine. I believe at Mayo, we had a 3 month and then yearly to make sure everything was ok.

I hadn't read the info about the robotic not being an option, but sounds like the right call, especially with your history.

Prognosis is pretty good for sure. I always encourage folks to evaluate their lifestyle and see if there's any changes (that they're willing to make) that *may have keep them healthier down the line.

 

[alarmguy]

…

Prognosis is pretty good for sure. I always encourage folks to evaluate their lifestyle and see if there's any changes (that they're willing to make) that *may have keep them healthier down the line.

you might find this crazy, I always maintained the proper weight with few exceptions.
In the last almost 2 decades I took my eating habits to a crazy level of fruits, broccoli, and fish, lean meats only. Limited to almost no processed foods as best you can in American diet.
Very few snack foods except on occasion.
I’m the only male in my family without diabetes or heart bypass surgery or any stents

I did have a small timing issue that was taken care of with an ablation almost 3 years ago regarding PVCs

To give an example we like to eat out typically once a week in a decent restaurant and it is a challenge for me personally not as much my wife to order dinner that doesn’t contain fried foods, seed oils stuff like that. I never ever eat anything fried and always avoid any high fat foods. I typically will eat a salad plain or if I feel a little daring, I’ll put a sprinkle of a salad dressing on it.

Typically ocean caught fish 2 to 4 times a week, once in a great while a lean steak, I even eat a homemade hamburger with 92 to 95% organic grass fed beef but never in a restaurant

Other family members thought I went to extreme, and as far as eating out, Bonefish Grill is the only large restaurant that I feel I can truly eat healthy
But I do OK with some others it’s just a bit more tricky and we never go to a place that only has fried food

Ps! You might find this interesting but Duke University suggested as an option I might want to get genetic testing. It was free of charge and no known genes to cause prostate cancer were found. Actually the gene results came back perfect for the genes that were tested.
So maybe I will be one of the lucky ones without a reoccurrence down the road? I don’t know how that works.

 

[panthermike]

Sounds like you do very well then They say if you live long enough as a man; highly likely you get it eventually no matter what.

 

[alarmguy]

@panthermike
You’re fast and I’m always editing my post so I updated it above and you may not have seen all of it. Add one more thing to the list and I never drink soft drinks of any kind and I make my own black iced tea in the summer, but that was only recently.
OK now I really have to go lol thanks it’s been fun

 

[alarmguy]

Sounds like you do very well then They say if you live long enough as a man; highly likely you get it eventually no matter what.

That’s what one of my doctors told me some years back and here I am!

 

[R18Civic]

Best of luck to you in your journey to become cancer free.

My mother just had breast tumors removed yesterday and we're waiting for biopsy results to come back on her lymph nodes. I haven't been this emotionally stable in recent memory. One minute I'm laughing the next I'm in tears. Just been doing a lot of praying and trying to stay positive. The Good news is they caught it early.