Remained undetectable for only 15 months, this sucks…
So, my New Add On Medical Oncologist states
I’m Oligo Metastatic
He did labs and did a MRI (11/14/2023) and he will see what’s going on,
At my other cancer care hospital the previous 3 CT Scans all dated since 07/2023 states a mass,
on the Ct scan it showed up in May 2023
The Ct Scan stated as a reoccurrence, so it was a mass now a tumor, but possibly alittle smaller on one side it’s 1.3cm x 1.3cm
How much higher than PSA 0.19 do I wait for a pet scan?
Went to a Major Cancer Care of Excellence Hospital which is where
I presently have a Medical Oncologist I see every 28 days for my labs and Firmagon Injection.
I added on another Medical Oncologist which I plan on seeing 5/6 times a year at a Major Cancer Only Treatment Hospital.
My first and main oncologist which I have since diagnosis 07/01/2022 has not given me any scans since diagnosis
The gastroenterologist did CT Scans to see possible issue I’m having with blood in stool since July 07/2023 which so far has picked up diverticulitis, what a hag diverticulitis is
as I go 3/5/8 times a day…
Yes, still with some blood, anemic but with high ferritin.
I just went back to work after a 14 month hiatus and now my PSA is rising. 10/31/2023
Am I failing Firmagon and Zytiga with Prednisone already?
I work out in the field in the automobile industry.
Tonight 11/14/2023
My PSA was/is
Prostate Specific AntiGEN (PSA)
0.19 ng/mL
[0.00 ng/mL - 4.00 ng/mL]
( my psa rose 0.08 in 7 days)
Nov 7, 2023
0.11ng/mL
<=3.99 ng/mL
Oct 10, 2023
0.09ng/mL
<=3.99 ng/mL
Sep 7, 2023
<0.06ng/mL
<=3.99 ng/mL
Aug 8, 2023
<0.06ng/mL
<=3.99 ng/mL
Jul 6, 2023
<0.06ng/mL
<=3.99 ng/mL
I have a reoccurrence mass on my prostate bed, my first Medical Oncologist Does Not want to radiate yet probably not at all.,.
This MO only believes in systemic therapy mainly.
Second add on Cancer Care of Excellence Medical Oncologist will decide based on new PSA as of today and MRI, possibly with more test…
Davinci Radical Prostatectomy with Pelvic Lymph Node Removal:
All 8 Pelvic Lymph Nodes Negative for PCA but in fat deposit aside a lymph node had pca
After surgery pathology:
Positive Margins
Micro Bladder neck positive
Micro positive along bladder wall
So,
Am I already failing my first treatment line of ADT ?
I’m on a monthly Firmagon Injection
every 28 days and
Zytiga with Prednisone daily
Metformin 500mg Daily
Written by
Shorehousejam
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I wouldn't worry at this point. How long have you been on Zytiga? Sometimes Zytiga takes a while to kick in. I am not sure measuring PSA every week is a good idea.
I thought the same regarding the weekly PSA testing. I'm strictly every 3 months unless the MO directs differently.
To shorehouse, I know it's easier said than done, but it helps tremendously to extricate yourself from the disease. Stress will only make things worse as it has a detrimental effect on one's immune system.
Were you diagnosed as metastatic when you had the RP? Seems you were treated as though metastatic prior to your RP? Did you have PSMA PET prior to RP......nowadays PSMA PET would have been SOC for your case.
Take a deep breath bro.....you are still" undetectable"... you would have to dble sevrl more time to be ready for psma...if you still have the walnut...jam on till u cant....bw
Did you use the same lab for both tests? If not, results from two different labs may differ, sometimes quite significantly. Are you planning to go to this second MO from now on? So far my MO ordered only 3 monthly PSA tests. I had the temptation of going to another lab in the middle because I was worried about my PSA unnecessarily. But I did not because I trusted my MO.
My cancer became metastatic 5 years ago. My MO put me on intermittent Lupron. Every time I was on break I became very jittery about small fluctuations in PSA. From Ocrtober 2022 to August 2023 my PSA fluctuated between 0.34 and 0.29 even on Lupron. I was very jittery about my cancer becoming castrate resistant. Then Between August and November this year my PSA jumped from 0.3 to 0.8 and a PSMA PET/CT scan detected new PSMA avid lymph nodes. So I am castrate resistant and started Zytiga + Prednizone starting from November 10.
There are many lucky men on this board whose cancer has been under control for many years. Unfortunately, we are not in this lucky group. Nothing may stop our PSA jitter, but we can hang in there and hope for the best. In your case, I should wait for the next two monthly PSA test to figure out the trend. If it continues to go up, then you should go for a PSMA PET/CT when your PSA reaches a threshold determined by your MO.
Why are you talking to an MO about radiation, thats an ROs job. Get a proper RO opinion. What's wrong with radiating the prostate bed? Mine was radiated along with lymph nodes at a cancer center of excellence. Minimal side effects, and I have no evidence of disease. (I have no prostate, if you were going to ask!!)
I don’t have a prostate either, Oh it gets worse, I should have radiated before I started bleeding from rectum, the mass is now a tumor on prostate bed fossa, abutting rectum and bladder.
I have to do more scans or wait for a pet scan, I had one at diagnosis
Gleason 8/9 and you had surgery? Urologists need to take responsibility for not informing you that seeding may occur. I hope you research your next steps carefully.
I wasn’t aware of seeding myself but have always wondered if surgery does spread it in heavier cases such as Gl 8/9. My psa hovered around6-7 for five years before surgery n then went up to 12 post op, I’m like wth 😳, so I’m pretty confident the surgery spread/released quite a few cells in prostate bed, fortunately radiation ☢️ and ivermectin have it under control now…
Yes my fringing urologists (3 total) didn’t mention a thing about seeding but I suspected that’s what happened after my psa went from 7 to 12 post op. I’m like isn’t this supposed to b the other way around…!
But there also is suspicion it happens during the separation of the marginal walls and or seminal vesicles not to mention carving out the prostate in general… hence so many people’s psa rises after surgery…
If , a big if, seeding happens, that does not invalidate the overall results for the overall efficacy of RP .....if it happens commonly, RP results would suck....and they don't!!!
The age of a RP patient is much younger and typically a higher Gleason score than a typical RT patient. Comparisons are not straight forward. 40% seems high...I've read studies with 25%. Regardless...the concept of seeding isn't well established... I've read the arguments...the concept of seeding is more hypothetical than reality.
Just surprised RP was recommended with such high Gleason score. Radiation yeilded a very positive result for us. So far, so good. Great outcomes to you🌻
There is little to no evidence that RT outperforms surgery....the only case is when brachyboost is used....... the plus of surgery is avoiding ADT in most cases.
My RO suggested that I should not rule out RP.....more and more older men are choosing that, per the RO. This was his reply when I mentioned my concern about the ADT with RT!!!
Yes I know.....there are pros/cons of either as initial treatment....pick your poison basically!!
Yes, and there is a LONG list of potential SEs with RT +ADT......and almost all men will experience some of the ADT SEs......osteoporosis is NOT a good thing. Nor is impact on metabolic markers.
From my experience and from what I've seen written by other men, most Docs fail at adequately discussing potential SEs with men.
I hope you were one of the men who had a SE-free experience with with RT +ADT. If so, your secret?
I have nothing further to discuss with you. Buddy says you appear to be looking for argumentative folk to disagree with. That is not my agenda. We are in Kuala Lumpur enjoying our lives! Please enjoy yours. 🌻
Yes appears to be rising, it’s no longer undetectable. You probably need to get on a second line hormonal treatment like Xtandi or Abiraterone. After being undetectable for several years my MO, doctor Sartor recommended a PSMA scan when my PSA approached 0.2. It detected a spot on a rib that I had radiated with SBRT. PSA then decreased for nearly a year before rising again, so another scan and a spot detected on a different rib. I’m currently getting that radiated.
We were in a similar situation last month. Husbands PSA went up from .91 to .94 in a month. This great group calmed me down and said it was not truly a rising PSA until it goes up 3 times in a row. Thankfully, this next month's PSA dropped to .89. Hopefully yours will too.
I've posted about this before.. but I guess you never saw it.
I was tested twice from samples taken seconds apart, had both of them run at the same lab, same machine, same technician - and got different results. Significantly different results. Why? No explanation from the lab.
I still have a prostate and I'm off ADT - so my numbers will always be higher than someone who had RT. I had IG/IMRT/ARC radiation, 83 Gy. 45 times on the table.
The two reads in question are because two MD's asked for PSA tests, and the phlebotomist decided to fill those test requests by taking two samples and having two tests run.
The numbers were something like - 0.18 and 0.22 - not an insignificant difference. This was same day, same machine, same tech. Ones taken over a period of time, particularly if done at a different lab are not really valid comparisons.
Don't panic! (The Hitch Hiker's Guide to the Galaxy, Douglas Adams), and the answer is always 42.
First, I agree with Tall Allen that testing so frequently is not helpful clinically for treatment and will just raise your anxiety level unnecessarily. My experience is that meditation and deep breathing will help, as welll as finding a good therapist who works with cancer patients.
I am unclear on where is the tumor located. If it is on the bones, it can often be treated with SBRT or other radiation. Otherwise, a systematic treatment (i.e. abiraterone, enzalutamide, etc.) is your best bet for reducing the tumor size. I have botha soft tissue tumor near my bladder and had a bone lesion on my left femur which was treated with SBRT and have been on abiraterone for years. The bone lesion is gone and the abiraterone has kept my PSA in check.
Also, supplements can be useful for boosting your immune system and keep your bones healthy. I won't recommend anything on here but if you do careful research, you will find the key supplements that may help[. However, it's a personal choice. The MO will typically never recommend any supplements beyond vitamin D and calcium. You might also look into mushroom supplements that are cancer fighting, again this may or may not help. Everyone's experience is very individual.
I know it's hard but try to file the thoughts about what's going on away. Pull Em out once in awhile to check. I was in your spot a couple -few years ago. I drove myself nuts.After being on a break from ADT basically because of COVID for 18 months(it failed anyway) and I went on Xtandi I figured why keep taking it.
Fast forward to today, my PSA started creeping up and I have been back on ADT for a whole year. Against my judgement but my MO said I might have trouble getting things paid for if I don't. Well , it's not working. I'm now at 1.3 from undetectable a year ago.
Now to my point, years ago I would be flipping out, but now I'll just deal with what comes my way. No anxiety, I'll get a PSMA Scan next month when my plan G kicks in. Next week is my 13th year anniversary!
Worrying won't change a thing a matter of fact it's bad for you.
Give me the middle finger if you want. I understand.
You are 100% correct, in my post above I did type just being overly dramatic, but I am bummed that I think I’m on the lower end of the statistics of SOC, failing first line at 15 months instead of 24 months to 5 years, like many on this board, darn mutations…
I’m praying it’s just a bump and I can radiate it back down to undetectable
Thanks, I’m going to look into that, it’s a Shame these Physicians don’t use medications off label and in Cancer Care of Excellent Centers, I don’t they are allowed.
I wonder if Cancer Care Protocols which does not take insurance prescribes it at a ridiculous $1200 to $2400 for their protocols
Yes agree it’s such a shame, these physicians’ hands are tied only to follow soc which is ran by the pharmaceutical Co’s, and are afraid to pursue much more promising drugs n treatments. When I was researching alternative meds I couldn’t find anything about it for months and then finally came across the pub med article on ivermectin being repurposed as an anti cancer ♋️ drug. There is overwhelming evidence n studies on it’s effectiveness in killing cancer, not just putting it to sleep. Cbd is also extremely effective in reducing tumors, killing cancer both at about $1/dose. I also came across Dr Chen in Seattle but never followed up as I had researched enough n found the right dosages myself. Good luck if u decide to go the more appropriate route
Just Google article as I couldn’t get the link to pull up, or go to pub med n search it. There are quite a few interesting n beneficial articles to read.
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PSMA PET-CT Ga68 Scan results
Metastatic prostate cancer in the lungs
My Husbanddecided to do chemotherapy
