In February 2011, I was diagnosed with Gleason 3 + 3 prostate cancer with only 10% of 2 cores out of 12 was cancerous. I had brachytherapy in June 2011. My PSA dropped quite rapidly to 0.1 from pre-biopsy value of 3.4 within 2 years. Then in 2015 it started rising reaching 1.5 by July 2016. A biopsy found an extra-capsular cancerous nodule. ADT between October 2016 and April 2017 and cyberknife in January 2017 treated the recurrence. My PSA remained undetectable from April 2017 to January 2018. Then it started to rise quite rapidly: April 4: 0.2, July 13: 0.9, August 28: 1.3, October 4: 1.8, October 22: 3.26. The last PSA was just before a 3T MRI and 18F-DCFPyL PET/CT scan under a clinical study. The MRI didn't detect anything significant, but the PET/CT scan detected cancer in several lymph nodes in the pelvic region. It shows how sensitive the 18F-DCFPyL PET/CT scan is. This scan is yet to be approved by FDA.
I know some people will respond saying that a Gleason 3 + 3 cancer does not become metastatic. I am not going to argue for or against that. The bottom line is that I have metastatic cancer, a journey that started as Gleason 3 + 3 diagnosis 7 years ago.
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dac500
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I am BCR (PSA 0.7) My Ct and Bone scans 2 weeks ago at JHU were clear. Awaiting decision from NIH to receive the 18F-DCFPyL PET/CT scan. Thinking I may have the same result from the NIH that you have received (Pelvic Lymph Node Involvement). If so, I am thinking SBRT radiation treatment for the LN's. I would be very interested and grateful to learn what your next steps will be.
What some people do is reverse cause and effect. Saying that detected metastases are never associated with a true GS6 is very different from saying that a GS6 discovered by biopsy will never result in metastases.
Are you going to try for salvage pelvic lymph node radiation?
are several foci of abnormal intense DCFPyL uptake at the pelvis,
fusing to small sub-centimeter lymph nodes; representatives nodes are
seen in a 7 mm right perirectal lymph node (SUVmax 60.3), in right
internal iliac/pre-sacral nodes, measuring up to 9 mm (SUVmax 46.1),
two adjacent nodes below the aorta bifurcation measuring 4 and 5 mm,
with SUVmax up to 49.2, a 6 mm right common iliac node (SUVmax 56.1)
and a mildly DCFPyL-avid 3 mm left pelvic wall node (SUVmax 4.7).
Several intense DCFPyL-avid retroperitoneal nodes, as seen in a 6 mm
upper retrocaval node (SUVmax 37.6) and in a 5 mm lower retrocaval
node (SUVmax 75.4). Mild uptake in few small bilateral inguinal
nodes, non-specific.
I have not given any thought on possible treatment options. I already had radiation treatment twice. I have an appointment with my urologist on Oct 31 and with a MO at Penn Medicine on November 9. In the meantime, I am just trying to get used to this new reality. Then I will look into different types of treatments. I suppose my age has to be factored into whatever treatment option I choose.
NIH is currently evaluating whether it is feasible to do biopsy of one or two sites. It is in the study requirement. Of course, I am free to opt out. If they want, I will go for the biopsy.
Although they are small, some may be big enough and accessible enough to biopsy - why not? it probably won't tell you anything you already don't know, but it might (hopefully not, though).
The new findings from the SPPORT trial should be encouraging for you (even though it was among post-prostatectomy men). They found that salvage whole pelvic radiation with at least some short-term ADT was curative in almost 90% of men who failed prostatectomy. Maybe you should consider talking to a radiation oncologist (Eric Horwitz at Fox Chase would be a good choice) as well?
Biopsies can miss high grade cancer. You can now treat all your pelvic lymph nodes with IMRT . I did that in 2015 at Dattoli Cancer Center in Sarasota with no recurrence at last in the area treated.
I have recurrence in pelvic and other lymph nodes in abdominal area. Recent article (inserti, fodor,mapelli et al. Journal of nuclear medicine Vol. 56 No.12. Dec 2015) suggests a way to rstimate orognosis and also suggest tomotherapy may be very effective as salvage trestment
Gleason grading is subjective. My biopsy was graded 3+3. Post-surgery was graded 4+4.
I have read hundreds of stories online typed by men who often believed that there could be no mets after their initial diagnosis. Their initial scans show nothing has spread, and they have an RP or BT and they have Psa drop very low, but then it rises, and so often they have mets, after being told they had no mets.
Scans can only see mets which are big enough to see, and so nobody can ever assume they have no mets if the scan did not see any. The tiny mets that are too small to see will all grow bigger. Some do grow big enough to see, and be dealt with by STBT but I soon found I had so many mets that any beam RT was never going to prolong my life.
In 2009, I had a Gleason 9 with 9 positive samples in biopsy, but Iam alive 9 years later.
Docs could not do an RP after opening me up. But the hundreds of mets I have probably began while my intial Pca tumour grew while producing a low Psa, so by the time action was taken, it was always going to be a fight lasting many years.
My bones are riddled with mets. Docetaxel over last 15 weeks just let Psa go from 12 to 42. In 10 days I have my first Lu177 infusion. My days are numbered for sure, and I will be lucky to get an extra year of life from Lu177 that will cost $40,000 for 4 infusions. The Lu177 is targeted systemic RT, and unfortunately there is not much else left to try. I had ADT and cosadex and Zytiga, they all failed to suppress the Pca after 7 years. Suppression is never a cure, and the cancer lives on after these drugs fail.
But today, soon, I'll cycle 60km because its a very nice day here, and although I am riddled with cancer I don't have pain and can do all things I have always done, although I am slower at 71 than I was in previous years. None of us get to live forever, or get all we wanted.
I'm happy on the bike, and I quite content in my workshop to do craftwork, and will be well until I just can't do life how I like it.
I try not to be depressing to those good people around me, and I am mostly cheerful each day.
I have no idea what life will be like in 1 year's time. I did have a very good 2017 though. And between 2006 and now I have cycled 135,000 km, and glad I did every km, glad I stopped for countless coffees at cafes, saw a million smiles, and was at peace with the Universe, without debts, without anyone hating me, without upsetting a wife or kids by my illness and I have passed through the worldly existence without many negatives. I was usefull and I worked hard, and it now I can reflect without many regrets.
The CAR-T idea is yet to become available therapy for Pca at any hospital or clinic in Australia anywhere, and I ain't holding my breath waiting. It does seem to have some promise but unless they get more than 50% success rates it may not be approved, and it may never become available for anyone.
Marsden Hospital in UK , ( who gave us Zytiga ) were able to help 15% of Pca patients with a few who got huge resonse, but others had bad side effects where altered T cells attacked healthy tissues. This is difficult to reverse or prevent.
But if I eat a little more pasta, on the bicycle I can ride fasta.....
I managed 274km in last 7 days, day 7 to 14 after chemo. I look forward to what is available, Lu177, beginnining on 8 Nov, in 10 days time.
I have seen so many die from various cancers and other illnesses who got very little time to deal with any of their traumas of treatment, side effects, disease symptoms, or mental aspects.
Most of the tradesmen who taught me so well in their 50s and 60s when I was under 25 all died from something or other before they got to 65; and they'd built a weekender cottage out of town, or they'd built a boat, but their lives finished and there was no final dream of living without working while getting an old age pension. Life for them was one long hard grind.
I have outlived my father and a sister who only made it to 60. My mother lived to 98 though, but her QOL was not so good after 90.
I'd rather have a bicyle than a Maserati. I have never thougth getting rich was a path to happiness. Sure, I worked hard, and had a house paid off by 37, without any help from others. I just didn't need to spend like other fellows, and I never let anyone ruin me.
I have had a fairly good life compared to millions of others.
I can't live forever, but for my later years I savour each day. I have been lucky to be able to keep doing things I've liked for so long.
I have no idea what life will be like in a year's time.
You are blessed and graced to know these things. And I believe there is no death just another world. May you have many good years left by your positive energy forging you through.
If there was another world then I would like to see the real evidence that it exists. Many ppl just think its called Heaven, and I an not able to believe in any of these things that many religions say do exist.
I do believe in many things for which there is no visual evidence, like electrons, or magnetism. We know these unseen things exist because a huge amount of evidence that is other than visual supports their existance, but I have never ever seen a God, or a spirit, or a ghost et all. I cannot feel that they exist.
What I do believe is that people should try to be good without deference to any God of promise of eternal life. But I am not an athiest, because that means there is just nothing else we ever could understand that explains why Existance, Infinity, Eternity. We just have no clue what the Big Picture is about these things. We are a fairly dumb species on an ordinary planet around a Sun and afaik, there are maybe millions of other planets just in our galaxy, and IMHO, they had life in the past, have life now, or will have life in future.
So what value does anything I say have when I am not able to know what the "people" think on billions of other planets in our Universe, let alone the billions of other universes?
It is not a sin to describe possibilities about the Universe etc, but it is, IMHO, arrogant to suggest our beliefs are the truth about other worlds where we might go after death. Afaik, when we stop living, our consciousness ceases, and what others have known us to be just stops, and we become nothing except organic waste. I'd like to be wrapped in an old bed sheet and buried under a tree, no headstone needed, and the tree would prosper.
I'll be real surprised if I wake up on another planet after I die.
You'd think people who went elswhere after death would try to let us know how they are getting along, but not one call yet has ever occurred.
But some ppl imagine relations are a calling from afar. I do not confuse what I imagine with reality.
I know many people that believe as you but There is a creator, how you choose to believe is your right. I’ve seen spirits, I’ve had spirits contact me through doorbell rings and lights flickering . I believe there is a afterlife . The Bible is profound ... many other planets yes, I saw my dad’s spirit leave his body when he passed. Of course the only proof we have happened many moons ago from the creator when he sent his son Jesus Christ to save us from our sins and ourselves.
But the creator is nothing that has identified him self, herself, itself yet, and we cannot know it because a creator is just something that has been imagined.
Dorbell rings and flickering lights mean nothing unless someone gathers all the facts and analyzes it carefully. Maybe a child pressed your doorbell and ran off. Maybe the electricity company had some equipment trouble causing mains voltage to sag briefly.
NOBODY has ever provided any proof that a God or spirits or a Devil exits. What does exist are the seven vices and seven virtues, and nobody needs to ever consider these while thinking about any God or spirts, and nobody needs to read the Bible, Koran, Tora and all other religious texts.
BEFORE any religion was invented, we had ppl come to Oz 60,000 years ago and they drew pictures of the lives they had on cave walls, and the coped very well without any Bible.
Afaiac, God did NOT send a sone to save us. Its a fairy story. God did not have intercourse with Mary; there was no Imaculate Conception, and the official Church doctrines are mainly fake stories.
Nobody wrote down Christ's life until 70 years after he died. He was just a Good Bloke, and attracted followers, and like ppl do on FarcePuke now, and all of the miracles did not happen, but were added to sex up the story of a man.
If you follow what Christ taught, and omit all mention of miracles and God the Father, God the Son, or God the Holy Ghost, then maybe you are a better person for large amount of time you spend deriving the small amount of New Testament that is a plausible truth about the human condition.
Only doctors can extend my life while I have Pca, I don't bother praying, because there isn't anyone out there who can listen. To believe there is a God, we need to get a reply fro our prayers. I have seen countless devout prayers die and suffer with illness, and nobody gets a lottery win after praying, and any wins in life for prayers is merely co-incidence, and prooves nothing.
I am content without any God. I do not need or want some kind of daddy figure up the sky, who rewards me if i am good, or punishes me if I sin.
I had a nice bike ride of 60km today.
I begin Lu177 in a week, and maybe it gives me more time on Earth before I become smoke up a chimney or fertilizer for a tree.
I will not exist anywhere after my death. Just as well, and nobody can come after me for being an un-repent heretic while on Earth.
Well, these days we often try to find an Allan Gorithym to help our spiritual health. He's booked out. But I don't need him, or God, because "spiritual health" is a complete nonsensical notion to me.
I don't seem to have enough time to explore the vexing issues of beliefs much further than I already have, and when I did, it always was not helpful to me, and I just tried to be a good man.
I was never jailed or sued, more than one lady found she could love me for awhile, ppl liked my work and paid for it, and I have no enemies or debts, and I don't like having to die because life is wonderful.
I like simplicity, and I cannot understand why ppl invent all sorts of things in their mind rather than deal with reality.
If Jesus turned up at my front door, I would welcome him in. But if the local Catholic bishop turned up, I'd be likely to tell him to piss off.
I would be quite amazed if God knocked on my front door.
Its extremely difficult to have religious arguments here, and instead of doing this in real life I have to accept the explained beliefs in God in other ppl, and be kind about it.
I just don't need to proclaim that I consider God and all ideas about souls and spirits to be a commonly and communally imagined number of concepts. Its better that ppl have something they believe in that helps them live better. I happen to believe that ppl can practice goodness without any help from any supernatural being.
Some would say "How dare than man be such a heretic!" Well, I never saw the past times of religious wars and Spanish Inquisition et all to be eras where believers in God could be very proud.
Its obvious there may be a presence in the Universe of something inexplicable that brought life to evolve through evolution. But I cannot see that praying to that undefinable presence for a lottery win or Cancer cure will do any good. Maybe there are billions of trillions of universes outside our own, and the extent of Nature is simply not known, and I don't expect to find any reason for anything to exist, its all just there, largely unexplained. Better be good, there's nobody supernatural to forgive you for your sins.
So my motto could be "Goodness without God". One can practice the 7 virtues more than the seven vices to try to be a pleasant human, all without any thought of God or what is in the Bible. So why is it than so many just have so much trouble being good?
I've always accepted blessings. Its wonderful goodwill. Thankyou.
I hope Nature is kind enough to give you many happy long future years.
I also hope your doctors find a solution for Pca to allow those years to happen.
Is the hystology of the detected tumor say ductal?....just wondering as thats aggresive type...although grading would probably be higher..prayers for you...
Dac.... VERY sorry to hear this..... just goes to show, I guess, that you can never be absolutely sure and that truly sucks!!... I would have felt quite relieved with your initial results ( in fact... those WERE very close to my initial results when I was initially Dx'd with Pca 2 positive cores Gleason 6 psa, however, of 5 which is what prompted the biopy.... Psa rose rapidly and second biopsy G-8 ( still only in 2 cores with minimal evidence of ca..... Now ( 7 yrs post EBRT) awaiting results of a bone scan and haven't decided if I am going to devote the remainder of my life to treating Pca....live alone...very few supports.....very limited funds.. It's a lot of work staying alive with this disease not to mention VERY expensive... If the damn disease would claim me quickly without all the sequelae might have elected to just let it take me...
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Gleason 10 Stage 4 Metastatic Responding Well to Treatment
Advanced Metastatic Prostate Cancer
Progressing metastatic prostate cancer
