Retroperitoneal adenopathy & bone mets

RoxysDad
RoxysDad Member Posts: 11
My dad had RP in 1998, following a PSA of 19.0 -- then, in 2007, it reoccured in the pelvic lining. He suffered 40 radiation treatments (broad spectrum to the pelvic gurdle), causing multiple issues. His PSA has been 0.01 since 2007.
However, a recent CT scan, revealed bone mets "up & down" his spine, esophagus wall thickening, and retroperitoneal adenopathy and small retrocrural lymph nodes.
His oncologist is recommending a PET scan and then starting Dad on chemo. He's will be 79 yrs old in a few day... but he is a fighter. Thoughts on what the chemo will do??? We should know more after the PET scan, but I want to know if the chemo will give him 5 more years or 5 more months?

One very concerned daddy's little girl.

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    A bump in your dad's journey
    Roxy (daddy’s little girl)

    Welcome to the board.
    I am sorry to read about the recurrence.
    After failure of major radicals, cancer recurrence is usually found in the lymph nodes and bone. This is probably the results from the image study reported by his doctor. However, what is surprising to me is that the metastases could be detected in a CT scan even in the presence of a low PSA of 0.01. This is rare.

    Can you share more info on his PSA chronology along the years of treatment?
    What Gleason score were attributed to your father’s case initially?

    Some high grade cancer cells (Gleason scores of 9) are known to produce less PSA because they are highly differentiated and therefore very aggressive to metastasize. However, your dad is a veteran survivor of 14 years which makes us to believe that he got a lower grade Gleason. But you describe his diagnosis as very advanced and probably systemic, which seems not to be a cause of a resent fact.

    Probably his doctor’s recommendations for a PET scan maybe to check for the presence of oligometastatic cancer which could be radiated with focal treatments. In any case, your dad should get a densitometry bone scan to check for bone loss.
    I would also recommend you to inquire on the contrast agent used in the scan. F18 (sodium) is good to detect bone metastases. For soft tissue such as lymph nodes and organs, the newer PET with C11 (choline contrast agent) is acclaimed to be very reliable.
    Still another image study, the newer Feraheme USPIO (Ultrasmall SuperParamagnetic Iron Oxide) done with a high resolution 3 Tesla power magnetic field MIR, is claimed to reliable locate cancer colonies as small as 2 mm in the lymph nodes.
    You may find details on these tests googling their names and then discuss with his doctor.

    I am sorry to be so inquisitive, but cannot understand what is the reason for the doctor7s choice in chemotherapy instead of the more traditional hormonal treatment (HT). Surely chemo post radicals are part of protocols in PCa treatments but the side effects are more drastic than the side effects from hormonal therapies.
    Has your father ever tried hormonal drugs? Is he hormone refractory?

    Both treatments are palliative and can hold control on the advancement of the cancer. In any case, I do not know of cases where chemo was administered in long periods of time such as 5 years. Guys on HT with hormone dependent type of cancer have reported control over 10 years and continuing the control with a second-line drugs after failure. Only after complete failure of HT they have started chemo.
    More over, there are also a series of newer drugs which have gotten FDA approval to be used in the treatment of naïve chemo patients. Alpharadin have shown to be successful in the treatment of bone metastases. Zytiga is another drug that acts in intertumoral cancer activity. Your dad may have to start Zometa (a bisphosphanate) the soonest.

    I would recommend you to investigate on both treatments and the drugs. They can affect other illness treatment (eg; heart problems, hepatitis, etc) and they can interact with medications taken for other problems.

    Just do your investigations and discuss with his doctor.

    I hope that you find answers to your queries.

    Wishing your dad luck in his continuing journey.

    VGama
  • RoxysDad
    RoxysDad Member Posts: 11

    A bump in your dad's journey
    Roxy (daddy’s little girl)

    Welcome to the board.
    I am sorry to read about the recurrence.
    After failure of major radicals, cancer recurrence is usually found in the lymph nodes and bone. This is probably the results from the image study reported by his doctor. However, what is surprising to me is that the metastases could be detected in a CT scan even in the presence of a low PSA of 0.01. This is rare.

    Can you share more info on his PSA chronology along the years of treatment?
    What Gleason score were attributed to your father’s case initially?

    Some high grade cancer cells (Gleason scores of 9) are known to produce less PSA because they are highly differentiated and therefore very aggressive to metastasize. However, your dad is a veteran survivor of 14 years which makes us to believe that he got a lower grade Gleason. But you describe his diagnosis as very advanced and probably systemic, which seems not to be a cause of a resent fact.

    Probably his doctor’s recommendations for a PET scan maybe to check for the presence of oligometastatic cancer which could be radiated with focal treatments. In any case, your dad should get a densitometry bone scan to check for bone loss.
    I would also recommend you to inquire on the contrast agent used in the scan. F18 (sodium) is good to detect bone metastases. For soft tissue such as lymph nodes and organs, the newer PET with C11 (choline contrast agent) is acclaimed to be very reliable.
    Still another image study, the newer Feraheme USPIO (Ultrasmall SuperParamagnetic Iron Oxide) done with a high resolution 3 Tesla power magnetic field MIR, is claimed to reliable locate cancer colonies as small as 2 mm in the lymph nodes.
    You may find details on these tests googling their names and then discuss with his doctor.

    I am sorry to be so inquisitive, but cannot understand what is the reason for the doctor7s choice in chemotherapy instead of the more traditional hormonal treatment (HT). Surely chemo post radicals are part of protocols in PCa treatments but the side effects are more drastic than the side effects from hormonal therapies.
    Has your father ever tried hormonal drugs? Is he hormone refractory?

    Both treatments are palliative and can hold control on the advancement of the cancer. In any case, I do not know of cases where chemo was administered in long periods of time such as 5 years. Guys on HT with hormone dependent type of cancer have reported control over 10 years and continuing the control with a second-line drugs after failure. Only after complete failure of HT they have started chemo.
    More over, there are also a series of newer drugs which have gotten FDA approval to be used in the treatment of naïve chemo patients. Alpharadin have shown to be successful in the treatment of bone metastases. Zytiga is another drug that acts in intertumoral cancer activity. Your dad may have to start Zometa (a bisphosphanate) the soonest.

    I would recommend you to investigate on both treatments and the drugs. They can affect other illness treatment (eg; heart problems, hepatitis, etc) and they can interact with medications taken for other problems.

    Just do your investigations and discuss with his doctor.

    I hope that you find answers to your queries.

    Wishing your dad luck in his continuing journey.

    VGama

    Great Feedback
    VGama,
    Thanks for your feedback! I did forget to mention (my apologies) that my Dad has been on the hormone shots (Lupron-Depot sp?) every 3 months since 2007 as well.
    In addition, his oncologist mentioned that there is 5% of PC cells that can grow (sounds very similar to what you have mentioned in your initial response), and do all the 'cancer-stuff' without raising the PSA marker. So, even though Dad's PSA has been next to nil (and still is 0.01 as of his latest blood work a week ago) for years, the disease may have been working behind the scenes. His oncologist has already set him up on the monthly bone shots - Rx Xgeva. He will receive his first injection this week.
    The whole testing started back in Feb. 2012, when Dad had some pre-op tests done in preparation for the AUS 800 (new value, 2nd attempt). His first valve failed after only a few short months, and the urologist felt awful about it. So, this last attempt was successful - so far (not at the 8 weeks post-op yet). Dad has a lot of scar tissue from the radiation and finding good, healthy tissue was challenge for the doctor. So, 2 days before this surgery - we were told he has possible bone mets. Ever since then, it has been none stop tests and appointments.
    First the MRI, then CT Scan, then CT Scan with contrast, now PET scan. In the middle of all this - Dad broke 3 ribs while trying to pull an undershirt off over his head. Crazy? I know...
    All Dad wants to do is get better so he and Mom can get on Goldwing and ride. I am afraid that if can break bones that easily, riding the bike could prove to be an issue. But how do you tell a very determined man that he cannot do what he loves.
    Dad is no stranger to the big C. He has also battled several skin cancer bouts on his face, ears, and back – he was a hard working farmer’s son in his younger years.
    Daddy's little girl
    Roxy
  • Kongo
    Kongo Member Posts: 1,166 Member
    RoxysDad said:

    Great Feedback
    VGama,
    Thanks for your feedback! I did forget to mention (my apologies) that my Dad has been on the hormone shots (Lupron-Depot sp?) every 3 months since 2007 as well.
    In addition, his oncologist mentioned that there is 5% of PC cells that can grow (sounds very similar to what you have mentioned in your initial response), and do all the 'cancer-stuff' without raising the PSA marker. So, even though Dad's PSA has been next to nil (and still is 0.01 as of his latest blood work a week ago) for years, the disease may have been working behind the scenes. His oncologist has already set him up on the monthly bone shots - Rx Xgeva. He will receive his first injection this week.
    The whole testing started back in Feb. 2012, when Dad had some pre-op tests done in preparation for the AUS 800 (new value, 2nd attempt). His first valve failed after only a few short months, and the urologist felt awful about it. So, this last attempt was successful - so far (not at the 8 weeks post-op yet). Dad has a lot of scar tissue from the radiation and finding good, healthy tissue was challenge for the doctor. So, 2 days before this surgery - we were told he has possible bone mets. Ever since then, it has been none stop tests and appointments.
    First the MRI, then CT Scan, then CT Scan with contrast, now PET scan. In the middle of all this - Dad broke 3 ribs while trying to pull an undershirt off over his head. Crazy? I know...
    All Dad wants to do is get better so he and Mom can get on Goldwing and ride. I am afraid that if can break bones that easily, riding the bike could prove to be an issue. But how do you tell a very determined man that he cannot do what he loves.
    Dad is no stranger to the big C. He has also battled several skin cancer bouts on his face, ears, and back – he was a hard working farmer’s son in his younger years.
    Daddy's little girl
    Roxy

    Chemotherapy
    Roxy,

    I'm sorry to hear of your father's situation. Chemotherapy is used much less with prostate cancer patients than those with other cancers where the cells are dividing fairly rapidly. Prostate cancer cells typically divide very slowly so traditional forms of chemotherapy have not been shown to be very effective. For elderly patients there is also a concern that the ill effects of chemotherapy will be less well tolerated than in younger men.

    In the past few years, however, there have been some studies that suggest that chemotherapy using the drug docetaxel is modestly useful in interrupting the history of castrate-resistant metastatic prostate cancer.

    If you do a Google search on the effectiveness of chemotherapy in prostate cancer (or any other cancer for that matter) you may be dismayed with what you learn. Frequently studies discuss the "response rate" of prostate cancer to chemotherapy. This is basically an indication that the cancer is reduced or shrinks. Unfortunately you can't relate a response rate to long term survival and very few studies show a correlation between chemotherapy used to treat advanced prostate cancer and measurable extended mortality. I've even read that a confidential survey of oncologists found that more than 90% would not recommend chemotherapy for a family member or undergo the regimen themselves. Much of the anti-chemo literature is from those proposing alternative cancer cures but there is enough information out there to give one pause.

    As Vasco suggested, I would question the doctor on why some other treatment other than chemotherapy.

    Your father's doctor should be candid and frank when discussing these options so that he can make the best decision in balancing quality of life against the potential incremental increase in longevity. And, in situations like this which have such a large potential impact, I do hope you seek second opinions. Frankly, the statistics don't suggest that chemotherapy will produce a five-year increase in longevity for an advanced cancer patient but everyone responds differently and as you wrote, your father seems to be a fighter.

    Wishing your family the best.

    K
  • mrspjd
    mrspjd Member Posts: 694 Member
    RoxysDad said:

    Great Feedback
    VGama,
    Thanks for your feedback! I did forget to mention (my apologies) that my Dad has been on the hormone shots (Lupron-Depot sp?) every 3 months since 2007 as well.
    In addition, his oncologist mentioned that there is 5% of PC cells that can grow (sounds very similar to what you have mentioned in your initial response), and do all the 'cancer-stuff' without raising the PSA marker. So, even though Dad's PSA has been next to nil (and still is 0.01 as of his latest blood work a week ago) for years, the disease may have been working behind the scenes. His oncologist has already set him up on the monthly bone shots - Rx Xgeva. He will receive his first injection this week.
    The whole testing started back in Feb. 2012, when Dad had some pre-op tests done in preparation for the AUS 800 (new value, 2nd attempt). His first valve failed after only a few short months, and the urologist felt awful about it. So, this last attempt was successful - so far (not at the 8 weeks post-op yet). Dad has a lot of scar tissue from the radiation and finding good, healthy tissue was challenge for the doctor. So, 2 days before this surgery - we were told he has possible bone mets. Ever since then, it has been none stop tests and appointments.
    First the MRI, then CT Scan, then CT Scan with contrast, now PET scan. In the middle of all this - Dad broke 3 ribs while trying to pull an undershirt off over his head. Crazy? I know...
    All Dad wants to do is get better so he and Mom can get on Goldwing and ride. I am afraid that if can break bones that easily, riding the bike could prove to be an issue. But how do you tell a very determined man that he cannot do what he loves.
    Dad is no stranger to the big C. He has also battled several skin cancer bouts on his face, ears, and back – he was a hard working farmer’s son in his younger years.
    Daddy's little girl
    Roxy

    chemo
    Hi Roxy,

    Welcome to the PCa forum...sorry about what brought you here. Some PCa oncologists are beginning to use various different chemo protocols at earlier stages for higher risk patients, that is, patients who have not yet become Hormone Refractory/Castrate Resistant (HR/CRPC) and/or before there is evidence of wide spread distant mets. I personally know of two such high risk PCa patients who have received chemo along with ADT after RT. The goal of this type of tx is curative vs palliative.

    While some types of aggressive PCa produce a lot of PSA, other virulent strains make very little PSA as they progress. From your description of your dad’s case, the latter appears to be true, along with bone mets. You seem to understand the seriousness of dad’s PCa progression and that txs may be palliative. There are risks and side effects with chemo and/or ADT. QoL definitions & priorities are different for each patient. Your dad sounds like a strong determined man who is a fighter. Gotta love that spirit, especially after all he's been through!

    According to the ACS, “Studies in recent years have shown that many chemo drugs can affect PCa. Some such as docetaxel (Taxotere) and cabazitaxel (Jetvana) have been shown to help men live longer. New chemo drugs and drug combinations are now being studied.” Here’s a link to an article from the men’s ZERO project with info you may find helpful and encouraging: http://zerocancer.org/education/treatment/chemotherapy/

    Second line ADT drugs, as Vasco has suggested, but used along with the chemo, also may be something to ask the PCa oncologist about. If dad decides on chemo, ask the doctor if he uses different chemo drugs and protocols and which ones he recommends for dad, and why. Then do more of your own research.

    Your dad is lucky to have such a supportive and caring daughter along on this journey. Good luck to you both.

    mrs pjd
  • RoxysDad
    RoxysDad Member Posts: 11
    mrspjd said:

    chemo
    Hi Roxy,

    Welcome to the PCa forum...sorry about what brought you here. Some PCa oncologists are beginning to use various different chemo protocols at earlier stages for higher risk patients, that is, patients who have not yet become Hormone Refractory/Castrate Resistant (HR/CRPC) and/or before there is evidence of wide spread distant mets. I personally know of two such high risk PCa patients who have received chemo along with ADT after RT. The goal of this type of tx is curative vs palliative.

    While some types of aggressive PCa produce a lot of PSA, other virulent strains make very little PSA as they progress. From your description of your dad’s case, the latter appears to be true, along with bone mets. You seem to understand the seriousness of dad’s PCa progression and that txs may be palliative. There are risks and side effects with chemo and/or ADT. QoL definitions & priorities are different for each patient. Your dad sounds like a strong determined man who is a fighter. Gotta love that spirit, especially after all he's been through!

    According to the ACS, “Studies in recent years have shown that many chemo drugs can affect PCa. Some such as docetaxel (Taxotere) and cabazitaxel (Jetvana) have been shown to help men live longer. New chemo drugs and drug combinations are now being studied.” Here’s a link to an article from the men’s ZERO project with info you may find helpful and encouraging: http://zerocancer.org/education/treatment/chemotherapy/

    Second line ADT drugs, as Vasco has suggested, but used along with the chemo, also may be something to ask the PCa oncologist about. If dad decides on chemo, ask the doctor if he uses different chemo drugs and protocols and which ones he recommends for dad, and why. Then do more of your own research.

    Your dad is lucky to have such a supportive and caring daughter along on this journey. Good luck to you both.

    mrs pjd

    More broken ribs and 1st Xgeva shot
    Thanks Kongo and Mrs P (this site has been a great source for me... I don't feel like we are fighting this alone; with ppl like you to listen and offer suggestions, prayers, and support - I am coping much better. Praise God for your loving hearts!)

    The last few days have been very tough on Dad. He is in a terrible amount of pain; more than I have ever seen before -- it is heartbreaking. This morning was bad. Mom took him to oncologist for his 1st Xgeva injection and then straight to ER. Low and behold, they discovered even more broken ribs. How is this possible? He has done nothing, literally nothing - beside watch golf, and do crossword puzzles.

    His oncologist increased his pain meds again; I hope this will work for him. Still waiting on his insurance to authorize the PET scan, and we meet with radiology for palliative pain relief in the coming week.

    Still trying to comprehend how 6 weeks ago; Dad was in fabulous shape and having no issues and now he can barely get out his chair without a complete breakdown.

    Daddy's Little Girl - Roxy
  • mrspjd
    mrspjd Member Posts: 694 Member
    RoxysDad said:

    More broken ribs and 1st Xgeva shot
    Thanks Kongo and Mrs P (this site has been a great source for me... I don't feel like we are fighting this alone; with ppl like you to listen and offer suggestions, prayers, and support - I am coping much better. Praise God for your loving hearts!)

    The last few days have been very tough on Dad. He is in a terrible amount of pain; more than I have ever seen before -- it is heartbreaking. This morning was bad. Mom took him to oncologist for his 1st Xgeva injection and then straight to ER. Low and behold, they discovered even more broken ribs. How is this possible? He has done nothing, literally nothing - beside watch golf, and do crossword puzzles.

    His oncologist increased his pain meds again; I hope this will work for him. Still waiting on his insurance to authorize the PET scan, and we meet with radiology for palliative pain relief in the coming week.

    Still trying to comprehend how 6 weeks ago; Dad was in fabulous shape and having no issues and now he can barely get out his chair without a complete breakdown.

    Daddy's Little Girl - Roxy

    Bone Health & ADT
    Rox,

    Bone fractures/breaks may be directly or indirectly related to PCa and the use ADT drugs. Without proper monitoring by a PCa oncologist over any prolonged course of HT/ADT drugs, they can have serious side effects with regard to bone mineral degradation leading to fractures and/or breaks such as your dad is now experiencing. It is well known that continued use of ADT (CADT), especially without close monitoring by his PCa onc, can have many side effects, not the least of which is bone mineral breakdown and bone loss primarily as a result of decreased testosterone levels while on ADT.

    Prior to beginning an ADT protocol for PCa, many PCa Oncologists recommend a bone mineral density test to establish a baseline bone mineral density as well as to check for osteopenia or worse, osteoporosis—also possible culprits for bone fractures/breaks. A full cadio work up with a cardiologist is also recommended to establish baseline info for heart health. In addition to PSA tests, a complete blood panel, including vitamin D, testosterone and DHT levels, should be ordered by the PCa onc and rechecked at regular intervals during the course of tx.

    All these tests allow your PCa Onc to track and monitor any changes over time in bone and heart health that may occur as a result of ADT use. I wonder if your dad had any of these tests and was being monitored regularly while on ADT. Many PCa oncologists treating PCa patients with ADT will prescribe a bisphosphonate drug as a prophylactic measure to help prevent bone breakdown and bone loss while on ADT (these drugs also have risks). The Xgeva injections that your father has now started will hopefully help but, IMHO they should have been started sooner. Doctors may also recommend calcium citrate and D3 along with a daily program of weight bearing exercise (starting with easy walking, if/when he is able) to mitigate on-going bone health issues. Extended/continued use of ADT (CADT) may cause irreversible side effects for some men. Intermittent ADT (IADT) protocols allow testosterone levels to rise during the “off” cycles with the intent of recovering from ADT side effects before the next “on” cycle begins.

    It appears your father was on ADT for an extended period of time. It is not known if he was given any diagnostic tests or whether his PCa onc (current doctor?) monitored him regularly and proactively during that time. If you are still using the same PCa onc, you may wish to ask about this and perhaps even seek some 2nd opinions.

    I hope you get some answers soon. Good luck.

    M (mrs pjd)