I'm writing this post, because i need some helpful information! my dad, who is 58 years old was initially diagnosed with stage 2 prostate cancer, adenocarcinoma last November 2019 during a biopsy. They gave him gleason score 8. his psa was 6.0 back then. He was scheduled to have surgery this march to remove his prostate; however, in January of this year, he did a bone scan and they found out it had metastasized in several areas of his bones including spine and ribs. His PSA rose to 10. they said they can no longer do surgery. so now he is doing lupon shot with xtandi. I am sort of confused though, because his psa being 10 was quite low for it being metastasized. My question is, is it possible to have bone metastasis with such a low PSA? also is it possible that his initial biopsy in November was wrong? because in January his scan showed several mets, how could it have metastasized from stage 2 to stage 4 in two months, that seems unrealistic to me! any information can help!
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Yes, there can be wide-spread metastatic prostate cancer with relatively low PSA numbers.
With wide-spread "mets" to many bones, you will likely know in a relatively few weeks whether the Lupron + Xtandi combination is working, by looking at things like the PSA numbers and perhaps Alkaline Phosphatase numbers.
(You may be tempted to look backward with shoulda/woulda/coulda questions about past biopsies, test results, procedures, or treatments (or lack thereof). Many men and caregivers and loved ones do it. In my experience, this caused me some unnecessary worry and mental suffering during the first year or two after my first diagnosis starting out as Stage IV.)
Keep the Hugs going with your Dad. Encourage him to talk about his feelings and side effects. He's a lucky guy to have someone so concerned and loving as you.
Thank you Charles for your response. That was very nice of you. You’re right, we look in the last and question all the things we didn’t do right or fast enough but it is what it is. I just read your bio, seems like you are standing strong with all that you’ve been through. I’m positive you have many more years ahead of you. Stay strong!
PSA level has no direct relationship with bone mets...or to the aggressiveness of prostate cancer. People can have bone mets with PSA of 10...and some people have no mets with PSA of 10.
Just PSA is not enough to know how aggressive the cancer is. There are people with PSA level 5000 and still alive after 5 years.
Bone mets happen in about 90% people with advanced PCa and the mets can be GONE with appropriate treatment and a man can still live 5, 10 or even 20 years.
At this point, he is on rational treatment...I would only add increased physical activity ,
plant based food and herbs etc. along with relaxation/meditation practices. Alkaline phosphatase level indicates if bone mets are healing or not. Initially ALP can rise ..so do not worry..BUT after a month or two, it should decline and if it comes below 80 ,you are in bone healing phase. Best of luck.
Hi, thank you so much. your post was nice and gave me some positive vibes. his ALP has been 60 even before he started the treatment, so im guessing that is a good sign. he is going to get lab work in may to check to see if xtandi and lupron are working, but i dont think PSA is a good test to determine the effectiveness, i think a bone scan is a better option.Its good to know that men can be treated for a long time with metastatic prostate cancer! Thank you once again, stay stafe!
Don't know that he has it, but there is a type of prostate cancer that produces a relatively low PSA in proportion to the tumor burden. It's called neuroendocrine prostate cancer. Usually it's mixed with the more PSA producing type of prostate cancer.
The treatment for this is different from the more typical prostate cancer which responds better to hormone-based treatments. This is usually determined in biospy and there are also blood markers (Chromogranin, NSE and others) that can help to support the diagnosis.
For this type of prostate cancer, PSA is not as reliable as a "tumor marker" so if one these others is elevated, it can useful for tracking progression.
Every prostate cancer is a bit different so the more you know about his individual cancer, the better you can treat it.
Since his PSA is low, I would want to follow up with imaging at some point to make sure the treatments he's on are working.
That's what I would do. Just things for him to discuss with his doctor.
hi greg, thank you for taking your time to read my post and respond back. i really do appreciate it. Him having a low PSA for bone mets was always concerning to me, since i assumed the more cancer cells there are, the more psa, which means it works off of hormones. I assumed maybe he had a different type of prostate cancer, but his biopsy in Novemeber 2019 came back for adenocarcinoma in all the tissues, i assume if it was something else, it would have shown up in pathology. thank you again, stay safe!
A biopsy of the prostate is not adequate to determine what's going on with the metastases so I would get a tissue sample from one of these mets. Also would want to look at mutations that have treatment options. I would want to know this right away in order to direct the treatment accordingly.
Your confusion is understandable because your expectations are based on the typical situation, and the word "stage" is used for different things. But your father's case is not typical. Low PSA forms of prostate cancer are particularly virulent, especially in younger men like your father.
The biopsy only tells you the Gleason score and some pathological details. The "T stage," at that point, isn't based on the biopsy; it is based on what is felt on a DRE and any imaging of the prostate itself (like an MRI or ultrasound). When his biopsy results came back as high-grade Gleason 8, they "re-staged" him with a bone scan/CT. That's when they found the bone metastases, which put him in "stage M1b." The metastases did not occur in January, that's just when they looked for it, which is appropriate when Gleason score is high.
(To add to confusion, there are two meanings for the word "stage." The one you're used to, used for all cancers, is the AJCC prognostic stage grouping, designated by roman numerals I, II, III, or IV. The TNM "stage" is used to decide which "AJCC prognostic stage group" a patient falls into.)
If any of his bone metastases are large enough to conveniently biopsy, it sometimes (usually not, but sometimes) provides some valuable information like the histology, whether and the degree to which it expresses certain proteins like the androgen receptor, PSA, synaptophysin, Chromogranin A, neuronal-specific enolase, SSTR2, and DLL-3. This is done at a pathology lab. If there is enough tissue, he can possibly also get a Foundation One genomic analysis; if there isn't enough metastatic tissue, he can use prostate tissue for the genomic analysis. Because it is cheap and easy, a germline test using saliva (Color Genome Dx) may provide useful info.Where does he live? I might be able to recommend someone.
There are many ways to treat newly diagnosed metastatic prostate cancer now: Lupron+Erleada, Lupron+Zytiga, Lupron+Xtandi, or Lupron+Docetaxel. They all have the same benefit and equal degree of side effects, He should seriously consider Lupron+Docetaxel for logistical reasons, and because he is so young, side effects are likely to be easier on him. This is explained here:
Hi Allen, thank you for your response. you made some good points. biposy isnt an accurate staging, you are right, it is good to determine the type of cancer, as well as the gleason score. im sure he had bone mets during the time of biopsy as well! Also, you suggest it may be a different type of prostate cancer since his PSA is low. I also thought about this, but his biposy in November came back for adenocarcinoma only in all the samples. i assume if it was another type of prostate cancer, it would have shown up in pathology. His ALP level was also 60 before he started treatment, so i presume that is a good sign. We will know if the treatments are working in May when he runs a few tests. he is seeing a good oncologist in USC who put him on xtandi right away. i will keep posted up here, thank you,
Cancer typically involves mutations in 10s if not 100s of genes, and the mutations continue as the cancer grows and spreads. This means no two cancers are the same, and even in the same patient the cancer will be heterogeneous. All these varieties get lumped into a relatively small number of diagnostic buckets such as adenocarcinoma, Gleason score, etc. Depending on which genes are affected, prostate cancer can put out a lot of PSA, a little PSA, or none at all. I developed neuroendocrine this year, and it invaded my bladder and created a huge tumor while PSA was undetectable, and all other blood markers were normal. It literally is only visible on a scan. A urologist looking in my bladder with a cystoscope didn't see it just a few days before the fateful CT scan.
Most likely yout dad does not have a rare form of cancer, because those are rare. If he responds to Xtandi, and his blood work, scans, and symptoms improve, then it's best to assume he has a "normal" hormone sensitive prostate cancer.
Hi Tom, thank you for your response. I really appreciate you reading my post and responding back. Yes, we will see if the treatment works for him in a couple of weeks when he gets his lab work for the first time. I read your bio as well. Thank you for sharing your journey and staying so positive ! I hope the chemo works well for you, stay positive and strong!
Thanks for the kind words. The are signs chemo is working quite well, but this weekend finds me at that point in the cycle where I'm anything but positive and strong. This journey ain't for wimps.
I wish I knew how he didn't see it! My guess is he was looking for a recurrence of bladder cancer, which tends to grow like a mushroom or a "golf ball on a tee" into the bladder. My NEPCa appeared on the CT to be smooth an may have been under the bladder lining. He did see "friable tissue" in the prostate, which probably was the cancer in retrospect. During the first cycle or two of chemo I was peeing bits of wispy tissue in my urine.
I wouldn't call the CT scan "lucky". It was done in the ER because I had severe abdominal pain and was thinking appendicitis. It turns out the tumor had choked off the ureter causing hydronephrosis, so the pain was analogous to a kidney stone. They told me "your appendix is fine, but you have a huge growth in your bladder, and may need a nephrostomy". They also spoke to my urologist and oncologist who were both in utter disbelief. I ended up getting a stent, and my kidney numbers on routine blood tests have been improving.
Thanks Tom, my interest stems from my own situation. Like you, I discovered I had APCa because my PCa metastasised into my bladder where the tumour grew over my left Ureter which contributed to the discomfort leading to my DX. I ended up having a retrograde stent inserted which got the kidney back on line - lucky it worked. I hope to have that stent removed soon as I am nearing the end my Chemo infusions. The Chemo appears to have removed the tumour mass in the bladder, is shrinking the mass in my Prostrate and has killed the current mets on my Pelvis. I have a PSMA PET scan coming up soon and I hope it returns good news. All the best to you Tom, regards DD 😎
Wow, that is a similar story. I also have a stent, but prefer to describe it as a Krazy Straw stuck through my backside, into my kidney and down into my bladder. It would normally be due for a change or removal about now but with chemo and Covid-19 my urologist says it can stay in up to 6 months.
Fantastic news on your chemo and I hope to have similar results.
Cancer in metastases are different from cancer in the prostate. What is true of the cancer in the prostate is not necessarily true of his metastases. That's why I recommended biopsy of his metastases if possible. It is up to him to become knowledgeable, understand his options, and make decisions in collaboration with his oncologist. The oncologists's job is to present him with options and recommendations for further diagnostics. From your post, it sounds like his oncologist simply told him what to do, and didn't explain his options.
He may want to get a second opinion. There are many excellent oncologists in the LA area. I can personally recommend Edwin Posadas at Cedars-Sinai, Tanya Dorff at City of Hope, Matthew Rettig or Sandy Liu at UCLA, or Prostate Oncology Specialists in Marina del Rey.
Hi Allen, when we received his PET scan. I was extremely suspicious. His pelvic and abdominal lymp nodes were all negative along with the seminal vesicles. Few patchy areas of uptake were noted in the prostate. Thoracic lymph nodes had an increased uptake, but the lungs showed no lesions or anything suspicious. The lab impressions stated “ despite lack of metastatic lymphedonpathy within the abdomen or pelvis, these Thoracic lymph nodes remain highly suspicious for metastasis, likely from patient’s prostate carcinoma; however sarcoidosis can have a similar appearance”.
I brought this up to the oncologist attention, and she was dismissive. I asked “ what if it’s something else?” She said “ it could be, but most likely it’s form his prostate cancer”. Then I asked “ but how is it possible for pelvic lymph nodes to be negative and thoracic lymph nodes to be positive? That makes no sense”. She was super dismissive and didn’t care so we changed our oncologist to a prostate cancer specialist located in USC. My dad didn’t have a chance to see him because of this covid pandemic. We are scheduled to see this doctor in May. Hopefully my questions will be answered this time.
Unfortunately, an FDG (Glucose) PET scan is usually not very good for prostate cancer. If he can afford it ($2784), there is a MUCH better PET scan (PSMA-based) at UCLA:
Ye someone told me about that too just now. thank you. I’ll let the current oncologist know as well. He also did an MRI and CAT scan. They both also came back negative for pelvic lymph nodes. I doubt all these three tests produced a false negative
Your confidence in those tests is misplaced. Three times zero still equals zero. MRIs and CTs only detect enlarged lymph nodes. It is well-known now that lymph nodes can be full of cancer without being enlarged. FDG can only detect cancers that use glycolysis to create their energy - prostate cancer doesn't do that until it has progressed for a long time. If you want to understand more about the limitations of imaging, read this:
Hmmm I just read over the link you gave. That’s interesting. I wish doctors would be more conscientious and not just go based off of what the radiologist report says. No one even suggested to do a bone biopsy
The rib metastases should be pretty easy and painless to biopsy. The success of a biopsy depends on how big it is. An "interventional radiologist" might be able to do it while he is in the CT machine to maximize how productive it is.
It's not explained by an Oncologist to PCa patients, about the primary tumor from the Prostate Gland to circulating tumor cells (CTC), meaning mestatisis, and why the bone is the preferred soil for anchoring CTC accumulation!
Maraba....before going into jungle of complex testing and treatment ...pause...and assume that it is average type of prostate cancer and not neuroendocrine type. Neuroendocrine cancer is in less than 1 % of people with Pca. If it looks like,walks like Horse ..it is most likely as horse ..and not a zebra.
The real way to know is ...that after a month or two, if his PSA and ALP are declining...on current meds ...its most likely regular PCa ..and not Neuroendocrine.
If PSA and ALP stays same or goes up..then all other possibilities have to be entertained.
Hi thank you so much for your response. It is very helpful! His ALP is 60, even before the treatment it was low. That’s why it was confusing how he has bone mets with low PSA and very low alp. And the biopsy said adenocarcinoma in all the tissues picked up in november. We will have to see in May if the standings and Lupron are working to shrink the Mets. Thank you again for your response!!
Maraba....ALP of 60 is certainly a good news. This means that bone turnover is not happening much...in other words cancer is not able to erode the bone..
In today's world, scans are sensitive and they can pick up bone membrane (periosteum) inflmmation and can be confused with real bone mets. Also, ask your doctor, if he notices any type of LYTIC lesions on his X rays /scans. These LYtic lesions are considered not good. His doctor should also check his LDH level.
For more info..check my post "Neuroendocrine cancer..some basic facts" on this forum which is about 4 months old.
If PSA drops below 1.0 in next 4 to 8 weeks, its going to be great. Most probably, it will drop.
Once again, your post was very helpful, and brings positive vibes. his bone scan did not mention lytic lesion, but it did say "subtle sclerotic lesion" in his CT scan. I will also mentioned to the doctor about LDH levels. and i will look into your forum regarding neuroendocrine. i will keep you posted. thank you!
Hi thank you so much for your response. It is very helpful! His ALP is 60, even before the treatment it was low. That’s why it was confusing how he has bone mets with low PSA and very low alp. And the biopsy said adenocarcinoma in all the tissues picked up in november. We will have to see in May if the standings and Lupron are working to shrink the Mets. Thank you again for your response!!
It would be interesting to know what a PSMA PET/CT would unveil.
With his PSA of 10 plus the boost of the already started ADT, this test will have a close to 100% sensitivity and specificity for detecting cancer cells avid in PSMA. If not, then something out of the ordinary is taking place.
Hello, thank you for your response. He had a PET SCAN in February, and there was increased uptake in some areas in the the spine, two on the ribs. some patchy areas in the prostate...and some positive uptake in lymph nodes around his thoracic region which suggested a lung biopsy to rule out "sarciodosis" since it had similar features to it. This was interesting to me because prostate cancer rarely goes to distant lymph nodes. his lymph nodes in the pelvic area was all clean, except for the intrathoracic lymph nodes..
PET and CT describe the equipment and imaging technology used. It is the infused radio-chemical (ligant) that makes the difference. It goes and binds to specific cells that show up as increased uptake in the imaging. Common prostate cancer is expressing PSMA. Gallium or Fluorine radio-isotope based ligants target PSMA cells and so cancer spots are detected. Other kinds of cancer show preference in glucose, so there is wide range of other ligants. All of the above tests fall under the category name of PET/CT. Consequently, for differentiating among the cancer kinds it would be useful to know for certain if the PET/CT taken was a ***PSMA ***PET/CT.
Hmmm I think he was given glucose during the pet/ct scan. Not sure if that can answer your question if he did the correct type of scan for advanced prostate cancer!
That along with the positive thoracic and negative pelvic nodes may indicate barking against the wrong tree. Are the doctors you are consulting specialising in prostate cancer?
our initial oncologist was not good. we saw her when he was first diagnosed back in January. she dismissed all of my questions and concerns regarding his diagnosis. i was suspicious to why his pelvic lymph nodes are negative and thoracic lymph nodes are positive, which is a very rare finding of prostate cancer. she was unable able to answer my questions, her response was " its possible that prostate cancer metastasized there". we changed our oncologist to a prostate cancer specialist who was unable to see him during this covid pandemic, but did a brief phone consult with him and switched his medication to xtandi.
It is good that you pose questions and seek reasonable answers vs taking for granted anyone wearing a white robe. IMO this is the best way to deal with your father's case. Stay firm.
I'm curious about PSA and ALP as a predictor of metastasis, as I have declining PSA and rising ALP. I found this study about intravenous Vit C and associated PSA/ALP levels for different gleason and met conditions that may be useful as a guideline...
The distributions of PSA for different states of diseases are shown in Figure 1A. PSA increased with an increasing clinical stage, and patients with metastasis had a statistically higher level of PSA than patients with localized tumor (P<0.001). Distributions of ALP for different Gleason scores and localized or metastatic diseases are shown in Figure 1B. According to these data the significant increase in ALP was measured for metastatic state of the cancer (p<0.03). ALP averages were 70±14 U/L for grades 2-7, 79±24 U/L for grades 7-9 and 196±127 U/L for metastatic stage of disease.
My psa was 5.3 and after biopsy was diagnosed as Gleason 9. I had 4 Mets to spine, rib & both hips. I had radiation, chemotherapy & have had Eligard injections for the last 4 years. After my last full body scan in February 2020, all Mets seem to have gone & my MO feels that I am in remission with a psa of <0.01 since treatment started. Will never be fully cured because it had spread, but there is hope after treatments. Stay positive, exercise & take care with diet. I am almost 72 years old and feel better than I have for years. All the best.
hi Brightman, thank you sooo much for your post. wow it is so helpful to read similar cases like my dad's. he also was diagnosed with several mets 4 on his spine, 2 on ribs in january with psa level of 10 and gleason score of 8.. i am really happy for you that your treatment is working well! it also gives me hope for my dad too... i will pass on the information! and yes exercise and diet play a big role in staying healthy!! keep us updated with your journey! stay stafe!
The problem with Pca is its un-predictability. I was diagnosed in Dec 2009, age 62, Psa 6, biospy said I had aggressive young men's type of Pca, Gleason 9. In April 2010, after opening me up for PG removal, docs found too much Pca outside PG capsule so they could not see what they doing, so they took some more biopsy samples and di not remove PG. I was to have EBRT within a 2 year time on ADT. Psa went low from 8 to 0.08 but so by mid 2016, Psa was 6, and the first 2 mets were seen in PsMa scan. I had more RT to PG and these mets and Psa went low while continuing ADT, with Cosadex added. Less than a year later, Psa was back up to 6, so I stopped Cosadex, began Zytiga, which suppressed Psa intil mid 2018, and by this time mets seen in PsMa scan had become countless in bones and soft tissues. Zytiga failed, so I began Chemo with Docetaxel, and that failed after 4 shots, Psa went from 12 to 45, so I booked in for for Lu177, because PsMa scans showed I'd get a benefit. I began Lu177 in Nov 2018 and had 4 shots by May 2019, and during that time I also started Xtandi, and Psa went to 0.32 by Nov 2019, and then Psa has increased ever since and would now be about 5.0. Docs don't know if rising Psa is due to Xtandi failing, leaving the Psa to be about what it would have been if I had not had Xtandi.
I see my oncologist in a month and Psa will be above 5.0, and I will ask to be referred to docs giving Lu177 for more of this, because research at PeterMac Hospital in Melbourne Australia suggests that Pca can be re-treated with Lu177 maybe 2 times, and each time get another year of having low Psa where Pca is no threat at all to daily health or QOL.
The only chance an RP will solve all PG problems is where it is removed before ant spread has occurred and all PG tissue is removed so whatever small % of PG left behind in RP does not develop cancer, and to get in early is essential, so men should act to have PG removed when Psa reaches 2.5, so that by the time surgery is arranged it might be 3.0, and Gleason might be a low 5. My Psa was 6.3 at diagnosis, and when Psa was 3.0, it was 4 years earlier in 2005, so I ws diagnosed 4 years TOO LATE for surgery to ever work, or be possible, because surgery can spread the Pca. There are no men at this website who had an RP and that the end of all their troubles with their PG. I don't know what % of men have total avoidance of Pca progression with an RP followed by no other treatment, but I guess its around 40%.
The combination of continued ADT for 10 years plus the RT to PG has totally exterminated my sexual capability I had at 62. I can still ride a bicycle 200km a week at 72, and be faster than anyone else my age or years younger, but I have complete ED and no feeling of pleasure is possible, but that's OK because I am alive, instead of dead, and I have not had a female partner who ever care for me or about me for very long since 1978. Women are beautiful wonderful etc, but although wanting one, she didn't appear in my life and I liked women, but didn't need to be together with one. Most women had a menopause well before I was diagnosed so what use was there for me to sexually capable after 62? NONE.
If I had not had Lu177 in 2019, I would have been forced to try chemo with Cabazitaxel, a slightly different chemo to Docetaxel, and I don't expect the Cabazitaxel would have worked any better, and Chemo is HORRID, and leaves long term effects in nerves in legs and feet.
So by now I might have been having palliative care, maybe dying soon. But I now feel very much alive.
In PeterMac in Melbourne they have trialed giving men Lu177 as initial Pca treatment, so that it attacks the Pca cells in PG and in mets, even when they are small. This way docs are getting some good Pca reduction and it helps prevent leaving Pca present for a long time when it is likely it mutates into some incurable form of Pca. Having 4 shots of Lu177 costs used $25,200 approx, and there is no Medicare funding. But having Lu177 early may prevent all the Medicare funding of ADT plus drugs like Codaex, Zytiga, Xtandi, and chemo, which is a huge bill for the taxpayers.
Some forms of Pca don't make much Psa, and don't respond to any kind of beam RT, and don't respond to chemo or Lu177, and these patients can die within a year or 3 of diagnosis.
But I have lasted 10 years since diagnosis, and probably 14 years since I first developed Pca, and my only symptom in 2004 was occasional pain each few months in morning in PG region, which went away when I got up out of bed.
In hindsight the Pca was probably expanding in size taking over region by region in PG, and causing some pain at it did. This can be misdiagnosed as something wrong with bowels.
Good scans are necessary to define the Pca status of any Pca patient, and its no use considering what might be possible if you don't have scan info.
From 2016 to 2018 I had fairly low Psa, but mets increased in number and size despite the treatments.
The biggest bone mets I had were in pelvis and femur, about size of a pea, but none were bad enough to need painkillers, or cause micro-fractures of bones. All the time since diagnosis in 2009, I have tried to cycle an average 200km+ a week, so I am quite fit and healthy apart from being a Stage IV cancer patient. By being so fit, I probably have avoided most of the side effects which trouble so many other men here. I will probably have my 7th PsMa Ga68 PET-CT scans soon.
hi Patrick, thank you for your long and thoughtful post. i appreciate it. i am glad you are standing strong for over a decade after being diagnosed. it gives me hope for my dad too... i initially thought his diagnosis was a death sentence so i was very sad when he was first diagnosed, but i educated myself and realized that men can live a very long time with the right treatment. your situation sounds very similar to my dad's.. his psa was 10 when they found mets in the bone scan in janurary, and i was so confused. i asked myself how psa can be so low with advanced cancer, but now i understand that not every prostate cancer will produce alot of psa and every one is different. i will keep you guys posted on here if the treatment is working. i did switch his dcotor to one of the best prostate cancer specialist in LA, who has written over 100's of research articles. hoping he is the best one for my dad! thank you again, stay safe!
I don't know what type of bone scans your dad had, but first I had 10 years ago in 2010 were full body CT scans with radioactive tracer to make any cancer lesions more visible. These all came up negative, but that didn't mean I had no mets; many mets could have been present, but were too small to be seen by scan. But in 2016 when ADT failed, PsMa Ga68 scans first became available in Melbourne, so I flew 800km to get this type of scan and talk to a radiation doc about results, and "salvation RT" if he thought i needed it.
ThePsMa Ga68 clearly showed a PG full of Pca, and two mets in lymph node each side of oesophagus. The doc said could radiate all with IMRT using the hospitals latest IMRT gadget using 'Calypso' method.
I waited a month for a second opinion where a urologist said I should proceed because with the previous EBRT I had in 2010, any operation was not possible.
So I went to stay in Melbourne for 5 weeks to have daily IMRT to all known Pca lesions. I began Cosadex as well, so Psa went down, but a year later a second PsMa Ga68 scan showed more lymph node mets and some bone mets, all with Psa < 7.
I had Zytiga added to ADT in next year, Psa went down to 2, but after that failed I had countless bone mets and more lymph node mets, so the drugs that manipulate hormones and the RT didn't stop my Pca progressing, they jut slowed down the speed of progression. But I have been lucky to not have any organs invaded by Pca.
ThePsMa Ga68 scans were far more sensitive than any CT scans and research docs in Melbourne have officially stated that initial scans should be PsMa Ga68 scans, not CT scans, which don't see small lesions or mets.
After 2015, Lu177 became available in Australia in Perth, and then in Sydney, only 300km away from Canberra were I live, so It was easy to travel to get the Lu177.
It has not come to my city Canberra yet, but some radiologists here want to be able to provide this type of nuclear medicine, because PsMa scans are available here. Lu177 is not fully approved here but if a man has failed chemo, he is allowed buy whatever treatment a doctor thinks might work, and Theranostics Australia told me at start of my Lu177 treatment that 70% of Pca patients get a good outcome, and they had done over 700 patients since they began treating men in Perth. Initially, Lu177 was for end stage men to get a few more months of life, but for some it was like magic, and they got much longer time. Some got no response. I got a good response. The trend in Germany where Lu177 was invented maybe 10 years ago has been to bring forward the time when Lu177 could be used, and PeterMac Hospital in Melbourne offers what is called a "lutectomy", where Lu177 is used instead of RP and its just as effective or more effective in many cases, and mets found at diagnosis also are treated because Lu177 is systemic; it goes all over a man's body wherever there is any Pca.
I learnt about what was going on around the world by reading research articles that were published, and I helped teach my local doctors here about these new methods of treating Pca, who were slow to understand theranostics. Your dad's doctor should be fully aware of the latest best treatments.
Ever since I came on here, now everything is starting to fall into place and things are more clear than they were before. When he was first diagnosed with mets, this was right after his bone scan. I was in disbelief since his prior scans came back clean ( except for his prostate area) Prior to his bone scan, he did an MRI, a CT scan, an x ray. None of those scans had showed anything abnormal. Just a “ degenerative spine”. That’s why I was so confused when they said he had mets after his bone scan. I was like “ wait, how can he have mets when his ct and mri were fine?” But now it makes sense, that these scans were not picking up these small cancers that had already spread! And bone scans are specific to the bone so they were more accurate. Thank you for that information. I’ll definitely look into the pet scan specified for prostate cancer. I’m glad you were passing this information on to the doctors! You’re very smart for doing your own research. If we stick to what we are told, the outcome wouldn’t be as good. This is why I had to switch my dads initial oncologist. She gave us no options and put him on casodex. I switched to a oncologist that specialized in prostate cancer. And he switched my dads medication right away to xtandi. We will see if it works. If it doesn’t I’m sure he will not what to do next!
Casodex is bicalutamide, Xtandi is enzalutamide, and both have similar action to block how the Pca makes its own testosterone when there is very low levels of testosterone in blood produced by testicles while on ADT, which works fine to keep T real low. But adrenal glands make a small amount of T.
ADT is a primitive way to control Pca reproduction of its cells and it appears Pca grows when it can make its own T, thus ignore whatever hormonal control doctors use.
So a change from Casodex to Xtandi may not work all that well. I had Casodex until it just stopped working, and then I had Zytiga, and until that stopped working, so I delayed the rise in Psa by a total of 14 months, which is not a very long time. Pca mets grew bigger and more numerous during the 14 months, and next protocol standard step was chemo, which did not reduce Psa after 5 shots, and Psa went up from 12 to 50. But after pausing chemo until I got Lu177 a month after 5th chemo shot, Psa went from 50 to 25, docs could never explain why, but allowed me to begin Lu177. I am glad I did switch to Lu177 because side effects of chemo on nerves in lower legs and feet were bad, and continue to have lasting effects. I am a keen cyclist, and I estimate chemo reduced my average maximum cycling speed about 2kph. I could average 26kph on a 27km trip across town, but now I struggle to average 25kph, and that slow down is more than yearly natural aging.
But hey, I and ALIVE, and able to ride a bicycle 90km on a good day, and feel good after, and at 72yo, speed is not everything!
My oncologist was wised up to how good PsMa G8 PET/CT scans had become by mid 2016, because they showed more than other older type of CT scans.
Initially, he was fairly dumb because hospital didn't have the software to view the 3D scans in 2016, because Intelliviewer software was $20,000, and many PCs in hospital were still using Windows XP or W7. But My oncologist really could not interpret what the radiologist was saying he could see simply because an oncologist does not have the same specialist training in radiography. So what the oncologist has to do is read the report attached to scan pictures, and make a decision about best treatment. My scans began to look like a Dalmation dog with lots of black spots, with increasing spots as years went by. Some Pca sufferers have a PsMa scan that outlines their whole skeleton because Pca is in almost every bone in their body, and the aim of a good oncologist is to prevent this ever happening with whatever is used to kill Pca in bones and soft tissue mets. The more the Psa rises and the more the Psa indicates Pca is growing out of control, the less chance there is of anything able to work to stop Pca killing a patient. So with Psa of only 25, I gladly got referred to Lu177 and it caused a very big Pca killing effect in many lymph nodes, and in my bones.
Cancer in bones is notoriously hard to treat; bones are the hard structure of our bodies, like castles, and it takes time to knock down a castle bit by bit, so Lu177 treatment kills only so many Pca cells in bones before becoming unable to kill all Pca until the next infusion usually 8 weeks later. By then, the body has carted away the dead bone generated by previous Lu177 infusion, and some Pca regeneration gets underway. So with repeated doses of Lu177, eventually bone mets are reduced and research docs in Melbourne are saying a man could have maybe 5 years more life after initial Lu177 has been started. This is much better than Chemo, with mean survival without Pca growing is about 20 months maximum, and more chemo may be very toxic. One reason why Lu177 is not yet available widely in USA is that its a game changer for many men with Pca, thus doctors asking for huge sums of money for treatments that don't work for very long are not able to get so many patients and in USA the medical "industry" has huge lobbying effect on politicians and regulatory authorities. When I got my Lu177, I met men who had flown in from USA to get it in Sydney. One was from New Zealand, and he didn't seem to get any benefit. As I mentioned before, Lu177 gives a benefit to 70% of patients, a better outcome than chemo.
I won't hesitate to get more Lu177 if the next PsMa scan indicates I might benefit. If I just ignore my Pca, then in 12 months Pca will begin to ruin my QOL and then kill me, Its all that simple, so act when you have to. I have a friend who had RP at age 66, and
Psa went to nearly undetectable. Then Psa began to rise, years later, so he had 70 Grey of EBRT to site of surgery and Psa nosed dived back down to > 0.01.
Its now years since that EBRT, and his last two Psa readings have been 0.02, and until Psa begins a much more rapid rise he has nothing to worry about. He will 80 next year. He never ever needed to use ADT or the add-on drugs like Cosadex or Zytiga. My oncologist said long ago that Pca can be a chronic condition that many men cannot ever get a cure for, but these men have a good QOL for the long time they manage to keep Psa low. A man can can have a health condition that might take 20 years to kill him, or something else kills him first. Its the best we can do at this time in history, with male longevity at about 83 years in Australia, a very nice improvement on about 53 years in 1920. Afaik, women's life span is slightly longer, despite prevalence of breast cancer and ovarian cancers. As we age, and live longer, we all become prone to getting cancer, because Nature designed life to reproduce, look after its young until they became a young adult, and when that's done there's no reason to live on for another 50 years.
Try to always ask doctors, "But what can we do Doctor" rather than ever admit defeat until one really has to. This is being positive.
Hi Patrick. Thank you for your helpful post again. You bring some positivity. Is LU177 similar to radium226? Because I heard radium is reserved as a last treatment and is very potent. But it also goes into the bones to destroy cancel cells directly. I heard some people have gotten worse after radium.
Another question I have hopefully you may answer. Does the pathology report for biopsy usually specify exactly what type of cancer it is? my dads biopsy didn’t state what type of adenocarcinoma he has. It just said adenocarcinoma in all tissues with Gleason score of 6,7 and 8. I’m just hoping he does not have the type that doesn’t respond to hormone therapy.
Hi Maraba, Radium 223 is a radioactive form of radium, but it is not the same as Lu177, which is guided by a special other chemical to make it gather at Pca mets only. Ra223 is attracted to wherever there is activity if calcium uptake, and a lot of that occurs in our bones, especially where bone cancer is active, and it may not just be prostate cancer spread. So when Ra223 is absorbed by Pca mets in bones, its concentrated radioactivity does kill much Pca, but a side effect is that the bone becomes brittle, weak, kinda like chalk, so when there are last mets in bones the Pca may be killed off, but a man has much reduced abilities to do things because his bones might fracture. So IMHO, its very important to keep Psa low and not let bone mets become so large that even with treatment that works, a man is not going to suffer extreme loss of QOL. Ra223 does not go to other soft tissue Pca mets, and there are other side effects that are worse than Lu177, IMHO.
Sometimes Actinium 225 is given because it works the same as Lu177 but has stronger action on all Pca no matter where it is located,but its side effects are worse than Lu177. Biggest side effect of Lu177 is a dry mouth and maybe dry eyes because for some reason we don't know, Lu and Ac are attracted to gather at saliva and tear glands. I had 4 x Lu177 shots, and did have some dry mouth for awhile, but only at night or if I cycled fast on my bicycle on a warm day. I have had no reduction of eye
lubrication and so my body has tolerated Lu177 very well,and much better than having chemo, where side effects last years.
The report on biopsy of prostate gland usually state that the prostate gland, PG, was what was given the biopsy, and the purpose of biopsy is to look for Pca, and a Gleason score is "grading of badness" for only prostate cancer, Pca, so the ardenocarcinoma really means cancer, and you can assume its Pca.
Pca which does not respond to ADT is a big problem, because a man does not get much time to decide what to do, and he has to go straight to chemo or radiation etc, and although I responded OK to for 6 years, I didn't respond well to external beam radiation, EBRT, which docs said "this will fix you" and it just didn't. Chemo failed. I know men who had same treatment of ADT plus EBRT and they had remission but it didn't happen with me, and I still have to fight to live. But the alpha - beta particle radiation that comes from radioactive isotopes ( Lu177) seemed to have worked the best so far for me. But to know if Lu177 will work, it is essential that a man get a PsMa Ga68 PET/CT scan. I have had 6 such scans already, and here they cost usd $450, and there is no Medicare funding, but this scan has been far more revealing than any other types of scan.
When I had my first PsMa scan in 2016, I was one of the first local Canberra patients to be sent 800km to Melbourne to get this scan and talk to yet another doc about additional EBRT. My local oncologist gradually learnt the importance of getting PsMa scan rather than reliance on existing CT scans of that time.
Its a rainy day so far here, and I'm indoors in my work shed doing stuff on electronics. I hope you are well,
Hi Patrick, thanks again for your long, detailed and helpful response! You’re right, radium sounds very toxic to the body. Seems like it may do more harm than good. I like the idea of Lu177, I will definitely keep this in mind. I am happy that it worked well for you and that you are doing good. Hope this continues Have you also done any bio phosphate infusions to help Strengthen bones ?
I had a shot of Zameta or what is a bio phosfonate to reduce bone density loss in 2012. Its effects are very long lived, and the next time my oncologist remembered to get concerned about bone density loss was in about early 2017, and he prescribed bi-monthly injections of Xgeva, another drug to slow down BD loss. Well after 3 injections in 6 months, I began to get a sore lower jaw bone because the side effect of having all these bone density drugs is that something goes wrong with lower jaw bone and it begins to die. I had my wonderful lady dentist have a look, and sure enough, she was able to put a probe through my skin on jaw without pain because a tiny hole had opened up because a tiny spot of dead bone had formed. An Oral surgeon confirmed the bother I knew was there, and I so the bi-monthly bone drug was a big overdose. One inject each 6 months is all that's needed. Jaw necrosis risk factor is low for ppl trying to avoid osteoporosis by taking bone drugs, but when you read what is said about these drugs, carefully, risk factor goes real high for men on ADT. A German study years ago showed bone health drugs like Xgeva did not stop Pca mets forming in a man's bones. Many doctors are mistaken about this. I probably have as good bone health as possible because all through summer I am on my bicycle and out in the sunshine for 11 hours a week which promotes my vitamin 5 production. All these ppl doing nothing at home, and indoors are all prone the diseases of laziness, but not me. However cycling 200km a week is good, but its not so good for high BD because what is needed to maintain BD is walking, or running.
Most men of 50+ can't run at all,and they never ever walk, its all too boring and they say they have no time. Its the repeated impact of steps we take that keep our bones strong. Swimming is also healthy, but no good for BD.
Men might go to gym, but many just push a few weights, then fill up on junk food, and what they are doing for their health is basically very little and not enough. I'd love to walk more like I used to at 40, but a motorcycle prang I had at 19 has left me with a painful left ankle that is allergic to walks, especially on sand, so NO romantic walks on a beach with a beloved lady would ever be possible unless I get an ankle re-construction, and these are expensive, and outcome not always good, and I get by without with ordinary life and cycling 200km a week with a bad ankle, and not having a partner wanting me to spend time at any beach. I'm relieved I don't have to perform gymnastics in a bed with a lady to proove I still am the Full Man; sex means nothing to me, I'd rather ride a bicycle.
I once watched a TV show where men over 80 and with low testosterone, maybe due to ADT were doing special exercises at a hospital gym where they had to jump over some small barriers during a walk designed to stimulate both health They all did well. A big problem in old age is having a broken hip joint due to weak bones, but that's avoided with a enough exercise, and the jumping impact is one of the best stimulants of natural bone strengthening. If a man does not use it he loses it. Astronauts who have spent months on space station without gravity cannot walk for awhile when they get back to Earth. Their BD is low, and they have to build that up again.
Levering many men out of their comfort chair is not so easy, and they cannot keep the commitment to health.
At present, I have overall good health, and maybe I do enough around the house and in my craft workshop to keep BD just good enough; it would be a little low, but not extremely low. But If I crashed off my bicycle at 60kph going down a steep hill, the ambulance staff would need only bag in which to gather me up with many broken bones. But riding a Harley would be many times worse. I am healthy because I don't keep myself wrapped up in cotton wool all day. I'm 72, and taken huge risks all my life, so I must have some idea how to avoid the bike crashes that make many ppl over 50 terrified of travel on 2 wheels.
But I have seen guys of 25 here on boards with only one wheel, with battery power to an electric motor, and they "surf" around on these, and these things terrify me, but young folks are doing things that my generation never ever could do.
I guess someone has to keep the knee surgeons in work
Thank you Patrick! That’s great that you are staying active! This is very important!
Yes I heard the biophospahte drugs can have a bad effect for the the jaw. Sounds scary! Fixes one thing, but does harm to another. A shot every 6 months sounds better than an infusion every month. I’ll ask the doctor about this option too. Thanks for the info again!
I have had 2 Bone drugs. One was Aclasta, 1 shot in 2012, to avoid bone density drop,
and no side effects.
Other was Xgeva, 3 shots over 6 months in 2017, and this caused the start of lower jaw death, with sore jaw and then dentist and oral surgeon confirmed I had a problem. But problem was caused by 3 times the normal dose prescribed by oncologist, who believes that such drugs not only reduce bone density loss, but reduce the tendency to get Pca bone mets. I found no evidence for either.
If a man is on long term ADT, his chance of getting lower jaw necrosis is many times the normal 1% rate for a normal dose, 1 shot each 6 months. So because I had 3 shots in 6 months, it was almost sure I'd get jaw necrosis.
Anyway, I quit taking Xgeva and the sore jaw stopped being sore, and the little hole in skin inside mouth closed up, and the little bit of dead bone must have healed.
Just being very active is the best way to keep bone density high, like a brisk 2 mile walk each day, or more. No need to run. Well, that means that a huge % of dads in the world are just going to spend their life sitting down, because many over 60 just are allergic to any exercise. So are their wives.
Xgeva is given by simple injection to an arm, but Aclasta is an infusion, with canula in a vein, and Aclasta slowly fed in over 20 minutes.
The biopsy doesn’t show the whole picture, he could of had more cancer then but without scans the doctor didn’t know. Time to see a oncologist. The treatment he is on is one of several choices. When I was diagnosed stage 4 at 66. I had been seeing the urologist every 6 months and was complaining of kidney stone and rib pain but my urologist didn’t order scans with contrast so missed the cancers with a PSA of 12. Fighting the monster now for 44 months 🙏🙏🙏🙏
hi Larry, thank you for reading my post and responding. i really do appreciate it. your situation sounds very similar to my dad. he also was diganosed with mets with a PSA level of 10. doctor put him on xtandi and lupron, now we have to wait and see if it works well, hoping it does. just read your posts too, i am happy xtandi is working well for you. that is good news!!!! keep us posted with your journey!
As you have must of concluded... you've come to the right place for helpful information. Best bunch of men in the whole world (me included). Your dear Dad is a young man to be diagnosed with Pca, but he does have one ace up his sleeve, and that is you. You seem like you're on the ball and probably in the medical field. As others have mentioned try not to think of "what of, could have and should have". Just make sure you have the best doctors available for your Dad and if you can have other members of your family join you as advocates in fighting off those tiny bastards.... Keep posting here and please try to make your Dad laugh.... Remember Pca is a slow growing disease and he will be with you and the family for decades (88 is my guess)....
hi John, thank you so much for your sweet message and positive aura. All of you on here have such good energy. And yes, this support group has the best men in the world, and the smartest too! you guys gave me more information than the doctors' would have never! i am happy i came on here. and yes i am in the medical field, you have good senses! wishing you best of luck as well John, i will keep everyone posted with new updates here! thank you, stay safe
Maraba, I don’t want to confuse you however, you keep asking two questions and have not received an answer that satisfied your query.
Here goes.
First, Biopsy. All that one knows on a sample from each needle. Cancer yes, cancer no. If yes, what grade of cancer or the Gleason score. Although a Gleason is not good, a (5+4) is better than a (4+5). The reason, a higher predominance of grade 5 than a grade 4.
As the biopsy is confined to the prostate, it doesn’t tell you or their than statistics, the chance that cancer cells have escaped from the prostate and are now floating around in the vascular or lymphatic systems looking for a place to land, multiple, and grow into a metastatic lesion.
I had a 6.8 PSA with a biopsied Gleason 7 (4+3). Within ten months of my primary treatment, I had metastatic lesions at T3 and L2 of my spine. I selected a medical oncologist from a major medical school doing research on advanced prostate cancer. After treating fir two months, he came in and stated, Don’t second guess your primary treatment because it did not matter. Micro-metastatic cells, too small to be seen on nuclear bone scans and soft tissue abdominal CT scans. It is why in choosing my primary treatment, I was given a 92% shot at cure for both procedures. Could I have been in the 8%, you bet!
We men do not always like the cards dealt, but we still have to play the hand dealt. So does your guy. Find a pro. Someone who is a specialist in geniturological cancers and then listen to them.
I choose research because they have greater flexibility in treatment; especially treatment beyond standard of care. Me? I would rather be a guinea pig on something new looking towards cure, than a bear trudging along in the world of palliative care.
Now one would think that this mutant cell would land at the first lymph node or closet bone or nearest organ. But remember that these cells are continually floating about and land or clump together open mitosis or dividing to survival.
The clinical trial I was in in 2004 was called Chemotherapy plus Hormone Therapy for ........ today that translates to Docetaxel with Lupron/Eligard injections. Tall Allen suggested that course of action. The others are good, however, I do not believe, and I could be incorrect, that only chemotherapy is effective in killing the little bastards in the lymphatic and vascular system. A total systemic treatment. Add hormone treatment and the benefit increases.
Talk to his medical oncologist about micro-metastasis and systemic treatment. Ask him what he would do if roles were reversed. Ask him is it better to have chemotherapy infusions when the body is strong and the tumor burden minimal or wait as a last shot of prolonging a disease ridden body with little strength.
Hi there, thank you for your information. Very helpful, like everyone else’s on here! The only reason I was misled with the biopsy was because of what his previous doctors have said. When he was first diagnosed with cancer through biopsy, his urologist gave him a “ stage 2a”. I was skeptical when she stated that it was “ stage 2a” because it seems strange to me how a biopsy can give a stage through just a few samples of tissue. Made no sense to me. And his other scans ct and mri weren’t picking up his other small areas of cancer. The one accurate scan was the bone scan so far. So far he is on xtandi and Lupron we will see with follow up work if it’s working! And he has a good oncologist that specializes in prostate cancer! So I’m sure he knows what to do step by step regarding treatment. Thank you again. And I am glad that your treatments are working well for you! Keep us updated!
My husband has an aggressive type of prostate cancer too. He was diagnosed 3 years ago age 57. He did chemo, surgery, and radiation. He also did some kind of radioactive shot to strengthen his bones and takes Xtandi
My husband’s PSA was never higher than nine and he had extensive bone metastases at diagnosis. We were told that a certain type of prostate cancer that is very aggressive does not lead to high PSA values. I hope that your father does well on his medication regime. Unfortunately my husband only got one year of benefit from it before the disease started advancing and he passed away two years after diagnosis.
I am very sorry for your loss Ms Raymonda. :(. I hope you are doing well and staying strong! I really hope my dad does well on the medication. Thank you. Thank you for taking your time to read my post and respond back.
I am in a state of confusion as your dad is also, Had a PSA of 12(gleason 8 12-2018) age 68 before biopsy went for surgery it was aborted because surgeon said it would do to damage to intestines. Lymph nodes removed and were clear. I was put on casodex and PSA dropped 1.2 then did 42 days of radiation PSA went to 1 and was on Lupron every 3 months. Three months later PSA went to 2,7 next three months 3.4 and just recently 8. Did bone scan ,ct and MRI now showing what they think are metatstasis in pelvis . One spot showed before surgery but was not addressed at that time. This spot is were the hamstring attaches to the bone( ischial tuberosty). I felt a tear happen at this spot and shows on mri. They wanted me to go into hospital for a bone biopsy but was hesitant with covid virus going on. Doctor agreed to let me delay the biopsy and treat as it is prostate cancer with casodex and now xtandi. Was not comfortable with the answers I was getting so had second opinion with an oncologist who specializes in prostate cancer. He took a lot of time and explained a lot of questions I had and agreed xtandi with lupron was the right treatment now and stopped the casodex. He explained because I had Ductal prostate cancer that it was more aggressive said that we needed to stop any spread and is consulting if I should have targeted radiation to the spot. Felt like I got a lot of info and options for treatment but came home with the feeling that I really did not have much of a chance for much of survival. Can't shake that feeling which is horrible may be because I did not hear him say everything is going to sunshine and lollipops. I know this serious and the stress is not good. Also did not mention that 17 years ago I had kidney cancer which had never spread was encapsulated and kidney removed. But was told this spot could be kidney cancer or some other bone cancer. So with the info I have been given just feel like there is no hope which is not where I want to be. So hoping the xtandi works because it seems as though the radiation did not and all I seem to hear are stories of men not lasting very long after diagnoses. So I can feel for your dad and you. Scooter
On the contrary, I am hearing a lot of positive stories on here even the ones with aggressive cancer with extensive mets who have been going for 10+ years already. So, Don’t be discouraged and hopeless. Seems as if you do not have extensive mets. You said it was just a spot on your pelvic? Are you having any urinary symptoms? Cause ductal adenocarcinoma is associated with urinary tract symptoms, even in early stages.
No urinary problems other than frequency from the casodex. I have one large spot that measures 3 inches( area where I had hamstring pop and could hardly walk for a couple of months) and 2 small spots in the 7mm. and smaller range.I was told this is atypical looking not sure what they meant by that. Before I had the diagnosis I had told the urologist I was having spells of excessive urination. Did not seem concerned at the time. I try to rationalize that maybe the spots are from the hamstring tear and the chiropractic treatment which I had that I quit because my pelvis hurt from his treatments. I thought he may have damaged the bones since I was told after radiation the bones could be easily damaged. I know that that is probably not the reason but wishful thinking. I appreciate your reply and encouragement. Scootman
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Have you also done any bio phosphate infusions to help Strengthen bones ?
Mets to the bone
Bone Mets and rising PSA
Mets to Bones and Lymph nodes
Dad recently diagnosed
Dad with Stage 4 PCa - Need some words of wisdom...again please!
