I have good news to report but I am now a bit confused about my prognosis. I need your help and your valuable expertise.
I was diagnosed with PC (Gleason score 9) in Nov. 2019. I have been on Eligard/Lupron + Erleada for the past 12 months my PSA has been undetected (<0.1) for the last 6 months.
Last week I did both a Bone scan and a CT scan. The Bone scan did not show any mets in the skeletal system. The CT scan report says that;
1. the "Prostate is top normal in size." What does this mean?
2. "There is no significant abdominal adenopathy by size criteria" and "retroperitoneal lymph nodes appear similar to minimally decreased in prominence" as compared to PSMA PET scan I did last March but significantly decreased since last January.
3. "There are no significant pelvic lymph nodes by size criteria" and "some left-sided lymph nodes may be slightly decreased in size as compared to the PSMA PET scan". For example the left pelvic sidewall node was 2.3x1.2 cm in Jan.; 1.4x0.6 cm in Mar.; 0.9x0.3 cm in Nov.
I met with my MO to discussed the report and he said that, I am in remission but I should stay the course untill ADT becomes ineffective.
Now, if I am in remission shouldn't I stop ADT? When and how will I know that I don't have PC? In this regard, going back to my original question: Is there a more accurate Test/Scan that I can take to see if I am cured or not?
I would highly appreciate your thoughts and recommendations.
Please accept my apologies for the lengthy post and many questions. Thanks.
Bill
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Nondetect is certainly great news, many never get that far, but I would not associate the words “cured” and “remission”. Hormone therapy has knocked it back but your PCa will evolve and reappear and require other kinds of treatment. How long before that jappens? I don't think anybody knows exactly for a given person. Others here with far more wisdom/experience than me I am sure will comment.
Thank you for your prompt response. Is there a more accurate test/scan that shows how much PC I currently have? It appears to me that PSMA PET scan will not provide any meaningful information because my PSA is not detectable and CT scan provides comparative information similar to the report findings I listed in my post. Do you think an MRI will provide me with the information I need? Thanks.
Since your psa is low I do not think there are scans that can provide the information you are seeking at this point. PSMA PET scan is pretty cutting edge and reading these boards I believe there is a reasonable chance it will find something if your psa >=0.2.
No better test is available, but there is a better methodology in getting info out of them. Up until now you have a dimensional comparison. Good, but not the best available. If at the first year anniversary you can repeat the PSMA scan, than the comparison will be on the PSMA expression. Much more sensitive and sensible one.
I thought about repeating the PSMA PET scan at UCLA, but I was told that it will not provide reliable information since my PSA is undetectable (<0.1). Do you think MRI will work in my case? Thanks.
No MRI is far less sensitive than PSMA. But, don't give credit to the simplistic binary logic of less than 0.1 equals zero detection rate. Mother nature doesn't function like this. For every PSA value and equally important for every rate of PSA rise there is a probability tied with. In your case, since you wrote you are stable, it is true that it will be low. My wild guess places it in the vicinity of 30%. Second and more important BUT: You are not looking for primary detection. You have your initial PSMA to be used as your baseline. It is the comparison between the two that makes the combo a more powerful tool. This is a basic principal in all sort of measurements. With the MRI that you mentioned, do you know what they do? They scan you first in a ordinary condition and repeat the scan after the contrast material has been administered. The difference between the two is more informational than either of them.
Sadly, you will always have prostate cancer. You are managing it as a disease you live with, rather than a disease you can be cured of. Metastases shrank because of the hormone therapy you are taking. If you stop taking it, they WILL grow back.
Thank you TA for your prompt response. Is there a way/test/scan to assess with certainity how many lymph nodes or tissues still have cancerous cells? will MRI provide such diagnoses? Finally what does it mean " the Prostate is top normal"? Many thanks for your help.
No way to know, unfortunately. The best PET scans (like PSMA PET/CTs) only detect tumors down to 4 mm. Jelle Berentz at Radboud University in the Netherlands has a Combidex MRI that goes as low as 2 mm. But that represents millions of cancer cells. There is no way with current technology to detect smaller tumors. We have to assume they are there - it would be ridiculous to assume otherwise.
I think they are just commenting that the size of your prostate is at the top end of the normal range - maybe around 35 cc.
The thinking is that there are micro metastasis they cannot be seen in any of the current technology for imaging. The PSMA scan is the state of the art. Nothing better out there yet. Many people who are undetectable for two or more years, will go off of Adt and take a “Drug vacation”. They then must monitor their PSA and when the PSA goes up, do additional scans at that time to determine when to go back on their meds. There is controversy out there as to whether such a drug vacation leads to longer or shorter lifespan. Studies today and have been inconclusive on the subject.
Read about Intermittent ADT . Plenty of info on this forum about intermittent ADT See old threads about it. Then, Discuss with your Doctor. Dozens of research studies in last 2 decades have concluded . \" intermittent ADT is NOT inferior to Continuous ADT." But candidates have to chosen carefully after seeing details case by case.
Thank you Darryl for your prompt response. My wife and I listened to a few sessions of the conference. In particular the one about using MRI at the early stage of the PC diagnoses in the UK. This made me wonder if MRI in my case would provide more accurate diagnosis about the involved lymph nodes/tissues while my PSA is undetectable. I would appreciate your thoughts. Thanks.
Intermittent has several other positives to going off cycle, if even for a short period of time. It allows the body to recharge from the constant pounding that it gets during the on cycle, it also can provide some freedom in the mental sphere as one can, for a time, forget about one's pc. I have been very lucky to have been able to undertake this form of treatment, and can attest to the above advantages these off cycles have given me.
Sadly, far too often, men are NOT given a choice, in part because it does cost more money etc. to monitor one's disease level, more frequent psa tests etc. I see NO downside to trying it, as if one's psa rises quickly, then you simply go back on your drug regime sooner. If your lucky, you get more time off. This is also why in part, I recommend shorter terms of lupron injections in order to be ready to take a break if one's psa level drops and reaches a nadir and stays that way for two months, again more tests and an ability to be able to go back on our drugs quickly-some treatments centres take months for men to get back into the loop, so one has to have their respective centre able to offer faster service. Lupron can be easily given by yourself, once you learn the simple techniques, so in fact, you can bypass your medical centre by keeping a small supply of lupron in your fridge-again, you have to set this up with your doctor etc. but I am surprise at how few men are offered or take advantage of doing more on their own, i.e. the less one has to spend inside a cancer centre, the better in my view.
Thank you for your response and valuable suggestions. I will definitely discuss Intermittent treatment with my MO in my next visit if my PSA continues to be undetectable. Have a nice holidays season.
Johnny: Let me clarify. If you read my past posts, you will note that I was strongly in favour of taking monthly injections of Lupron, instead of the standard six month dosage for a number of reasons, the primary one being that NO confirmation of the voracity of the drug's effects over time in the longer dosage. This can be compounded by the weight of the man involved as well as a variety of other factors, in other words, the longer one has a drug in one's body, the more likely that impact of the drug can vary.
It was for this reason and to reduce the number of doctor visits etc. that I embarked upon a program where once I learned how to inject myself, could obtain Lupron in monthly dosages, take one and keep the rest in my fridge. I would then go to a lab for a monthly psa test.
I accomplished several things from this self administration process.I regained some control over my cancer as I no longer had to spend a day in getting the required injection, I was able to ensure that the impact of the injection dosage had greater impact-or at the least not less over say a three or six month injection.
Ok, so I NEVER meant to suggestion that one abandon our medical team.
Another HUGE benefit of monthly dosages of Lupron is that when my Nadir was reached, I was able to react more quickly and go on an off cycle much faster, i.e. I wait for two months at my nadir, then stop my drugs, repeating this cycle as my pas goes back up to 4.
During my off cycles, I have been able to rebuild my system, in particular my muscles, including heart and lungs, have my testosterone level go back up and get my mojo back!!!
The above will NOT work for many, however the earlier that one gets onto a treatment program after failure, the greater the odds that this will enable a man to have several, and if lucky, MANY repeat cycles.
Yes, I was diagnosed with metastatic prostate cancer back in November 2019. The biopsy returned with Gleason score 9 and the CT scan showed regional lymph nodes involvement. Bone scan, though, was negative. At the time both my Urologists and MO determined that I will not benefit from surgery and/or radiation therapy and put me on ADT (Eligard+Erleada). The diagnosis was further confirmed with a PSMA PET scan at UCLA in March 2020. Thank you for asking.
Its early days yet to determine extent of mets and your Pca seems to be under control now, But if Psa rises to 2.0 while on ADT, then another PsMa scan could be done, and maybe FDG PET scan to see if any mets are not making PsMa. Just because Psa has gone low dos not mean Pca is reducing, it may just mean Psa production is slowed down, and mets unable to be seen in scans are really growing in size or number. My Pca showed no mets anywhere from 2010 with CT scans when I began ADT. But in 2016 when I had first PMa scan, first two small lymph node mets about 2mm dia were found. In 2017, lots more mets showed up and some bone mets. Patrick Turner.
Like you, I was dx with a G9 cancer, the kind you don’t want to mess around with since it is typically very aggressive and prone to metastasizing. That was the case with me, I was dx stage 4. I’ve been on ADT for close to 7 years now and for 6 of those years I’ve been fortunate to maintain undetectable PSA levels. I tried stopping one of my meds - Xtandi about a year ago to try and get some relief from side effects but not long after I did I bumped out of undetectable range. I immediately went back on it and PSA went back to undetectable. So steady maintenance of the ADT regiment that I’m on is required to keep it in a dormant stage - that’s the goal. I’ll never be “cured”.
Regarding scans, an Axumin scan is the most accurate, readily available scan but is not very useful until PSA reaches 2.0. Other markers I watch are my alkaline phosphate levels which can point to bone breakdown from cancer and I check T levels to make sure they’re staying <20. Good luck, enjoy being undetectable, that’s a good spot to be with a G9.
Hi EdBar, thank you for sharing with me your positive treatment journey. My MO also suggested that I stay the course with ADT until it stops working. I hope that my treatment with ADT lasts as long as yours. Be safe and have a nice holidays season.
Hi everyone hello. I had a question, I’ve just went through 7x of the combo chemo (Jevtana plus carboplatin) with not much success unfortunately. Still have increasing bone Mets but stable since it’s only still in the bones. Can anyone share with me the effectiveness of Radium223? I would like to see if that’s feasible at this point? Plus I had PSA and AP reduced however not at an optimum level. Still very high number. Dx in 2015 and have been on many types of androgen blockers-With no change.
Radium 223 + Provenge for bone only metastatic disease is shown to be effective. It on my shortlist of treatment options should I it. Lots of information on the internet regarding it for your review prior to discussing with your MO.
The battle at this point is in having as much time as possible in your hormone sensitive state as possible as long as possible. Strategies to extend it are not well defined. Intermittent ADT does not help for the majority but seems to be reasonable on an individual monitored basis. Since you are G9 and metastatic on PSMA you must be conservative and not cavalier, even with mets/ nodes not showing on scans currently. One thing you can do is to get on a bone protection program to make your bones stronger and perhaps more resistant to future mets. This would be Zometa combined with daily celecoxib, a beneficial combo. Alternatively demosumab (Xgeva
Or Prolia). I use Prolia and celecoxib at 400 or 600 mg per day.
Thank you for your suggestion of Zometa combined with daily celecoxi . I will discuss with my MO in my next visit. Be safe and have a nice holidays season.
I would also get Provenge treatment as soon as you can. Unfortunately it is not available for MHSPC here in the USA yet so I must wait to benefit from it.
I was able to get it approved by Anthem BC/BS even though I was still hormone sensitive. Your MO will need to work the insurance company pretty hard, but it's worth a try.
It is a good sign that you have 'responded' to treatment. The fact that you reached 'undetectable' is proof of that.
"Undetectable' is a number that is 'drawn' at the lab results - sometimes, as you read the stories from others, you'll note that the undetectable readings are different.
Some go as low as <0.002 - some are greater than 0.1- why the difference ? - probably the sensitivity of the lab equipment AND the 'bottoming out' is below a threshold, but as you can see - NOT an absolute zero in most cases.
Is <0.002 LOWER than 0.1 - the answer would be YES - does it matter - YES, but it is not an indication of an active state of cancer progression. The NADIR or lowest point one reaches / reached is a sign or level that establishes a baseline where you can compare to to verify IF there is progression.
The 'lower' you got, the better you responded to treatment AND is an indication that the cancer is in 'remission.
The logical question would be HOW did you get there?
Do you still have a prostate OR did they do radiation -AND/OR was there ADT used to 'bottom out' ?
So,as i ask those questions (just food for thought) you need to know that you are in a state of 'remission' and that state might be 'conditional'. The condition is that ADT is holding down the numbers. You aren't 'cured', but rather, you re managing the progression of the disease.
The real test to the question - Am I cured - is to STOP all forms of treatment to see what happens.
You are / were a G9 - so was / am I. I had 'no mets' and did radiation and ADT - was also 'node positive' meaning local spread'.
I have been on an ADT vacation for nearly 3 years now. How am i doing ?
I've had a BCR - a recurrence - the 'odds' were 50 - 50 that it would occur (further progression) - the word cure was a SLIGHT maybe.
It took nearly three years to go from <0.002 to about 6.0.
I'll need further treatment - pure and simple.
I don't want to ruin your day by pointing out the difference as to whether you ae cured or nit - you need to understand where you are sitting in the PCa staging and cancer sub-types.
Do NOT despair - this is not a death sentence for you - it is a fact awareness that you need to grasp - you shpuld be around for a long time yet - there is still time for more healing and IF you need to continue or stay on ADT, many men manage to go for a long time without any further disease progression.
And about the tests and scans - PSMA/PET scans are the way to go as long as you REMAIN castrate sensitive. We are fortunate to have this 'ultra sensitive' scan - until recently, that scan / technology was NOT available for most of us - it was a 'trial' thing - limited to the lucky few and / or those that could PAY for it out of pocket.
The good news is that it will become available for the 'many' as part of the tools in the SOC of the future.
ADT stands for Androgen Deprivation Therapy. Androgen is just the medical term for hormone. The therapy acts to deprive your body of the male hormone testosterone. Because prostate cancer cells thrive on testosterone the goal is to drive same to a reading below 20. The two most common drugs used to do this is Lupron or Firmagon. Both achieve the same thing but via different routes in the body. I chose Firmagon because of its lower risk profile for developing cardiovascular decease or CVD.
Keep a look out for a new ADT drug called Relugolix which is a pill form of Firmagon you take daily. It is due to be approved by the FDA in mid-2021 and will most likely become the treatment of choice for most men on ADT. In trials it was shown to have a 54% risk reduction in CVD, so that is a definite plus in addition to the benefit of self dosage and eliminating the hassle of monthly injections, or quarterly injections as in the case of Lupron treatments.
Hi Bill, I was diagnosed in Dec 2019 and have been on ADT ever since. However, as the ADT, Chemo and Radio have reduced my PSA to 0.01 and scans are clear, my Oncologist has recommended that I cease ADT and monitor my PSA. Perhaps your MO is more risk adverse. 😎DD.
Hello Doseydoe, both my Urologist and MO determined that I will not benefit from surgery or radiation at the time of my diagnosis. As for Chemo, they said it will be considered once ADT stops working. I will, however, discuss with MO ADT vacation in our next meeting. Thanks for your suggestion. Please be safe and have a nice holidays season.
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