I am wondering if we should be expected to be cured of this disease at this stage. We've gotten multiple conflicting and vague answers regarding this from different uroonc's we've seen. One said it has metastasized outside prostate so it cannot be cured and can only be merely managed while other has said it can be potentially cured since its only 'locally advanced' .
In my research online i've seen phrases like, 'high volume/low volume' , ' high risk/low risk' with no consistent definitions. Some seem to define high risk as > 3 bone mets while others consider any PSA > 20 high risk.
I want to press for more aggressive treatments if its in a curable stage ( vs just lupron ) . We are really confused about how to think about all this or what we can expect in future.
I know it depends a lot on how the patient responds to various treaments and hard to give def prognosis since everyone's cancer is different but getting a general idea about what we can expect would be great.
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meowlicious99
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Yes sir. By 'cured' i was thinking would there ever be a point where a 'ceasefire' can be declared, ie off all meds/treatments . Or is it war till in the end
Two years after brachytherapy for Gleason 3 + 3 cancer, my RO told me "Your cancer is cured". I replied "You mean in remission?". Now, I am battling metastatic prostate cancer. You should always be hopeful, but prepared for the worst.
It takes an experienced radiation oncologist like him to look at your imaging and determine what is treatable and what isn't. No one can answer your question without seeing the imaging.
Your presentation of disease is very similar to mine. Nothing showed on bone scan, MRI and CT scan showed only LN involvement but none could be biopsied to confirm. I had radiation and ADT based on "curative intent". On 9/15 after my blood tests, if all remains as it was 3 months prior I will be taken off my meds to see what happens. I asked once what my chance of cure (very long remission) then changed my mind and when saying no need to answer my Dr blurted out 50/50. I am placed in "regional" disease per NCCN Guidelines so I suspect you are as well. My 2nd opinion Dr at a well respected Cancer Center said no chance of cure based on my PSA of 156. So I suspect there is little to no chance of a cure but there is a chance for a long remission so only time will tell. I am not focusing on anything in anyway that will result in depression when it does not happen, just one day at a time. Enjoy and focus on today and to quote another on this forum, Life is Good.
In your profile you write: "Mass is involving base of the bladder and anterior wall of the rectum." Because the mass involves the rectum, or probably is just close to it, I would not radiate that but suggest surgery. Then, a year after surgery, you can get the pelvis radiated including the lymph nodes radiated.
I am on Lupron since January 2021,added zytiga in April and I have undergone radiotherapy to the prostate and to the lower abdomen (for psma mets in the lymph nodes) from May to July (38 sessions). My psa is now at <0.1 from its highest level of 116 back in March 2020.
According to my oncologist, he is hoping for a cure. I think it is more reasonable to to hope for a long term remission. I will be undergoing scans at least once a year to see if something is going wrong as the absence of psa is not a sure indication that the cancer is under control.
But I will not know if the treatment was a success until several months after January 2023, when I will then stop taking Lupron and Zitiga. Once the testosterone comes back, if the psa remains low and the scans keep on not finding new mets/tumors, then I will breathe easier. But I don't think I will ever stop worrying about cancer from time to time.
Mine was 186 last month for the first time since June 2018. Was below 100 until 4 months ago. I’m hoping it continues to go up and I get some energy back. It’s just as likely to go back down.
I asked about scans and my MO said only if there's a risenin PSA. I wasn't happy as I know there can be progression w/o a rise is PSA. Did you have to requests scans? I am getting my blood work this weekend to see if I stop meds next Wed 🤞. Its getting close and the anxiety is creeping in.
Yes I did request annual scans and my oncologist agreed to bone and CT scans but not psma scans. My bone scan is scheduled for October and my CT scan is scheduled for November. This will establish my new baseline since my radiation treatments ended in July.
it seems like the reader of the PSMA scan would identify the areas of uptake a little more definitively. There seems to be a hierchy of terms they use, "indeterminant" "low suspicion" "mild focal activity" "suspicious" "worrisome" "highly suspicious" "dominant focus" "avid." I'm just surprised the reader of the PSMA is not a little more conclusory as to what is going on. Enlarged lymph nodes with no uptake? But one has 11.2 SUVmax.
If it was me I would ask for curative treatment and see what they say. but the PSA is very high.
Sorry i typed in incomplete info from the psma report. I've update my profile with the following. Still doesn't seem to answer your question though. I will email the oncologist.
Irregular soft tissue dense mass lesion noted in entire prostate with Ga-68 PSMA avid tracer uptake( SUV Max: 30.9 , measuring 5.7* 5.7*.5.2 cm) .
Mass is involving base of the bladder and anterior wall of the rectum.
Enlarged perirectal, prescaral, bilateral external, internal and. common iliac lymph nodes ( suv max 11.2 on left external iliac node, measuring 1.9 * 1.6 cm)
No other abnormal ga-68 PSMA tracer uptake noted in the rest of the scanned segment of the body.
Physiological ga-68 psma tracer uptake noted in salivary and larcimal glands liver, spleen, kidneys and gut.
Urinary excretion of tracer noted in urinary bladder.
No abnormal GA-68 PSMA tracer avid skeleton lesions seen.
It’s exactly as you said, there is no consensus about this among the medical professionals.
Which isn’t unusual in the Pca realm.
There are those who believe you can only be cured if you have low volume, completely organ confined disease with no 4 or 5 in your Gleason. Many disagree.
This was probably a hard fact not so long ago. Now aggressive multi-modal treatments are being done routinely in oligometastatic men. This is relatively new.
Whether it works or not is clearly not agreed upon at all. In fact some docs as you know say there is no cure for ANY Pca. Yet there are high percentages of men in these earlier stages who have been NED (no evidence of disease) for 20-30 years or more, so we know there are cures, or close enough to be considered so.
For those of us un the ‘middle’, the data simply isn’t there for us (I am also oligometastatic, completed treatment last year).
They used to just throw Lupron at us for this level of disease, so at least they’re improving on that model. If the disease were not so heterogeneous, and the risk factors not so numerous and nuanced it would be a lot easier to know if we’re actually curable or not.
I was eager to do the super-aggressive clinical trial I did. My medical team praised my good physical condition and said as a result I should be able to easily handle the side effects of the drugs well.
More or less I did handle it well. It wasn’t easy, but not a big deal either. I knew how important exercise was so the Lupron didn’t hit me hard. Chemo was a little tough but short lived, Zytiga and radiation no problem. This all after RP.
Will all this ‘cure’ me? Absolutely no way to know, that’s all I’m sure of. Again, even 10 years ago they would have just let the PSA rise (which it almost always did) before doing anything else after RP.
Surgeons and the surgery itself are better. The radiation is definitely better. Scans have advanced greatly. Newer drugs are employed-early.
Does it matter? STAMPEDE and other similar trials will give us some answers, but I can’t imagine they’ll be very conclusive on this..
I suspect the patient’s biological health and fitness will eventually be known as the prime difference maker, other things being equal.
This because the majority of men with pca are sedentary, overweight or otherwise in failing health at diagnosis and beyond. The treatments only exacerbate these factors. Take care of your body for this ride!
Very difficult predicament, meow. Be careful not to take the personal, well intentioned perspectives of others here based only on personal experiences. Much of it will not be applicable so should be taken in the kind supportive spirit in which it is offered.I agree with Tall Allen (as is often so) that it will be the careful analysis of the scans by a very expert radiation oncologist, Dr. Murphy, to decide what is even possible and reasonable regarding treating all of the cancer if it has indeed invaded the rectum and or bladder walls. As the complications might be horrendous for him. So it needs to be very carefully considered indeed.
If “curative intent” radiation is not feasible. Then I understand that they current best ( most effective for longest overall survival) is an aggressive initial triple approach combining Lupron or equivalent, Abiraterone or similar, and chemotherapy. His MO will know about this. Search here or online for the PEACE-1 trial on this. Best of luck. “Woof!” Paul
I was “ cured” for almost 28 years after external beam and brachytherapy and then it returned. Three years and Two courses of curative intent tomotherapy later it has returned once again. Psma scan later today.
Some of the fellows in my us too group from 21 years ago are still “ cured”.
Only real discomfort in all these years Were side effects of treatment
Remember cancer is a meadow, not a forest Each case is unique in many unknown ways
Best of luck in keeping on.
Friend of mine just took a Pylarify scan and had a focal uptake in a lymph node that I interpreted as meaning it was avid and the RO at Duke told him 20% chance of cure. Which sounded low to me given that it was one lesion.
Yeah that does seem overly pessimistic if its just based on one lymph node
It’s a sticky wicket. A fine line between stage # 4 no cure supposedly . And a long term cure. A long remission is the best hope . Usually if a guy lives long past dx then the heart will go . That’s my hope. This is a disease of male depletion . It Doesn’t mean an immediate death sentence. It’s a life sentence trying to thwart the return . Hormonal #4 cancers are with us til the end. Love him much . That’s the best med. with #4 we kick the can as long as we can . Like the fed printing trillions there is still an eminent collapse of the economy closing in on us. Take care
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