Where Do We Go From Here?

mrscaregiver
mrscaregiver Member Posts: 5
in Prostate Cancer #1

My husband is 70, slim and in pretty good health other than 5mg of lisinopril to control HBP.  His PSA was 6 before he had a biopsy in late September for the usual symptoms of frequent urination, urgency and poor flow.  Of the 12 cores, 9 were positive for Adenocarcinoma.  Gleason Score as follows 3 @ 4+4, 5 @ 4+3 and 1@ 3+3, all most poorly differentiated, and varying from 5% to 95% involvement.  It was also noted on the biopsy that perineural invasion was present.  He had a CT scan and a bone scan which were clear and then a RP on November 10th.  After the surgery we were told that the seminal vesicles were involved.  The margins were clear.  The surgery was hard on him and he lost 16 pounds.  He has managed to gain it all back and is feeling much stronger.  The first PSA was done 7 weeks after surgery and the result was 1.04, another was done the following week, same 1.04.  Two weeks later he had another PSA test and we get the results of that on Wednesday, Feb 4th.  In the meantime his case went before a multidisciplinary team, which recommended a consult with a radiation oncologist.  We are waiting for that appointment.  We are in Canada so that is how it's done here.  I discovered your site a few weeks back and found lots of good information.  I have exchanged an email or two with Vasco d' Gama who suggested I post to the discussion forum.  I'm wondering if there is anyone else with a similar situation.  Also what  to expect in the way of other suggested treatments and side effects.  Any information would be greatly appreciated.

 

Sincerely,

mrscaregiver

 

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2
    Salvage combo therapy

    Mrscaregiver

    I have read several cases with similar results of your husband, discussed in this forum before, but unfortunately it is hard to find them. The forum’s searching engine is bad and useless when trying to find anyone’s threads or comments. I listed below some that may be of interest to you, and I hope you get responses from survivors;

    http://csn.cancer.org/node/249386
    http://csn.cancer.org/node/146496
    http://csn.cancer.org/node/245250

    In my opinion the pathological findings are not very favourable, in particular with regards to the involvement of the seminal vesicles. The prognosis of a case with SVI positive is identical to having lymph nodes metastases. In other words, the cancer is considered not being contained which makes it as a “rule” for further treatment.
     The Gleason pattern of 4 found in most f the cores is also not a good sign. Probably your husband needs to consider a more aggressive way of salvage therapy, in his next step. My lay opinion is that he discusses with the doctor in his next meeting on possibilities of having the combo therapy of HT (hormonal) plus RT (radiation).

    Here is a link explaining details about SVI involvement;
         http://myprostatedoc.blogspot.pt/2011/05/prostate-cancer-invading-seminal.html

    I am curious about the results of this weeks’ PSA. This is still a moment not far away from the surgery so that the result may not be very different from the last 1.04 ng/ml. In any case, the PSA is high and there is no other justification for its presence other than metastatic recurrence. Previous image studies were negative but now you know that they in fact were false negatives.

    My advice is that you and your husband do some researches about salvage treatments, their risks and side effects. Surely one could think in palliative ways to control the advance of the disease but at 70 he is not old and he seems to be fit to commit to a continuous treatment with intent at cure. Salvage Radiation is proper, and for that he should prepare a list of questions for the discussion with the radiologist.

    Surely your husband should try getting the opinion from at least two physicians to cross information. One subject I would discuss would be about the treatment protocol in particular about the field of the expected radiation area. This varies from radiologist to radiologist, and it may make a difference in regards to the side effects. Some zones may be avoided or less radiated.

    Best wishes and luck in his continuing fight.

    VGama

  • mrscaregiver
    mrscaregiver Member Posts: 5
    #3
    VascodaGama said:

    Salvage combo therapy

    Mrscaregiver

    I have read several cases with similar results of your husband, discussed in this forum before, but unfortunately it is hard to find them. The forum’s searching engine is bad and useless when trying to find anyone’s threads or comments. I listed below some that may be of interest to you, and I hope you get responses from survivors;

    http://csn.cancer.org/node/249386
    http://csn.cancer.org/node/146496
    http://csn.cancer.org/node/245250

    In my opinion the pathological findings are not very favourable, in particular with regards to the involvement of the seminal vesicles. The prognosis of a case with SVI positive is identical to having lymph nodes metastases. In other words, the cancer is considered not being contained which makes it as a “rule” for further treatment.
     The Gleason pattern of 4 found in most f the cores is also not a good sign. Probably your husband needs to consider a more aggressive way of salvage therapy, in his next step. My lay opinion is that he discusses with the doctor in his next meeting on possibilities of having the combo therapy of HT (hormonal) plus RT (radiation).

    Here is a link explaining details about SVI involvement;
         http://myprostatedoc.blogspot.pt/2011/05/prostate-cancer-invading-seminal.html

    I am curious about the results of this weeks’ PSA. This is still a moment not far away from the surgery so that the result may not be very different from the last 1.04 ng/ml. In any case, the PSA is high and there is no other justification for its presence other than metastatic recurrence. Previous image studies were negative but now you know that they in fact were false negatives.

    My advice is that you and your husband do some researches about salvage treatments, their risks and side effects. Surely one could think in palliative ways to control the advance of the disease but at 70 he is not old and he seems to be fit to commit to a continuous treatment with intent at cure. Salvage Radiation is proper, and for that he should prepare a list of questions for the discussion with the radiologist.

    Surely your husband should try getting the opinion from at least two physicians to cross information. One subject I would discuss would be about the treatment protocol in particular about the field of the expected radiation area. This varies from radiologist to radiologist, and it may make a difference in regards to the side effects. Some zones may be avoided or less radiated.

    Best wishes and luck in his continuing fight.

    VGama

    Things Moving Along Now

    VGama,

    Thanks for your reply and advice. We have the result of the 3rd PSA. When I picked up all the print outs of the PSA tests, the first one, post surgery was actually 1.2. The second one was 1.04, but since it was done at a different lab (at the Surgeon's request?, yes I know now that that is not right), I'm not sure if it should be considered. The third PSA was 1.1.

    We had our appointment with the radiation oncologist at the London Regional Cancer Centre on Monday. The treatment suggested is 35 sessions of radiation therapy to the prostate bed and lymph nodes, plus hormone therapy, concurrent I believe, for 6 months.

    Then we were offered a new diagnostic clinical trial, that had just started that day. Only 140 spots total in Canada, Australia and the U.K. (14 in Canada) and we hope to qualify for the no.1 spot (timing is everything). [F-18]-FCH PET and whole body/multiparametric pelvic MRI scan prior to treatment. My understanding is that Choline is used instead of Glucose which doesn't attract prostate cancer cells. This has been offered at the Mayo in MN for approx. 2 years but the radiolabelled tracer had a very short life of 20 mins. I believe this is like the 2nd generation and has a longer life. If I can find a link I will send it. If successful, it will eliminate subjecting patients to radiation and it's side effects unnessessarily when it won't do any good.

    Because it will be carried out very quickly, the oncologist we have, not the same one that's heading the trial, was okay with the timeframe. My husband is having a bone scan tomorrow, a CT scan on Sunday and one more PSA on Tuesday. If the tests still do not show anything and the PSA remains above 1, he will qualify.

    The surgeon we had recommended against radiation at first, then did a flip flop after the MDT came back with their recommendation but did not give any reason why he had changed his mind. I was a little uncomfortable with that.

    The local prostate cancer support group is bringing in another radiation oncologist to speak to the group tomorrow. Perhaps we'll get a moment to get another opinion.

    Mrscaregiver

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    In the right direction

    Mrscaregiver

    I am very glad for the news and to know about your progressive “moves”. You are in the right direction. I sincerely hope that your husband do the F-18 Fluorocholine (FCH) PET exam. Its results will surely influence any decision on the RT scheduling and protocol, but it will be for the best interests of your husband. I would do everything to hold such possibility even if the conditions to qualify do not fit exactly the requirements. I am not sure about the ideal level in PSA for the FCH contrast agent, but I read that some guys did it with a PSA close to 1.5 ng/ml. I know as a fact that these techniques have limitations in the image detection of the cancer and that one is subjected to false negatives at PSA levels lower than 2.0. How far could they wait for your husband’s PSA to reach an higher level, would be playing “roulette”. Here are some reading materials about the exams;

    http://www.ncbi.nlm.nih.gov/pubmed/11150750

    http://interactive.snm.org/docs/PET_PROS/Fluoricholine_07-27-12_Final.pdf

     

    In fact I have been trying to get involved into a similar trial to compare image exams between the test you mention against a newer radiotracer, the Ga-68-NODAGA-MJ9 PET/CT

    https://clinicaltrials.gov/ct2/show/NCT02111954

    Unfortunately my cancer is growing at a slow pace and taking too long to reach the right level of PSA (2.0 to 2.5 ng/ml), which may become too late to still avail the possibility in being included in the trial. The European national health services do not include in their programs these tests because of the costs, and that will be a big blow to my pockets.

     

    The treatment suggested (35 sessions of radiation [+- 70Gy] to the prostate bed and lymph nodes, plus concurrent hormone therapy for 6 months) seems to be the best. The hormonal portion will improve the outcome of the RT. The worse aspect is that the PSA will be “masked” and will take longer to certify success (via the PSA) at the end of the therapy (6 plus 4 months).

    I surprised other survivors have not joined our discussions. I hope guys out there feed in their comments.

    Best wishes in your and your husband’s case.

    VGama 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #5
    mrscaregiver said:

    Things Moving Along Now

    VGama,

    Thanks for your reply and advice. We have the result of the 3rd PSA. When I picked up all the print outs of the PSA tests, the first one, post surgery was actually 1.2. The second one was 1.04, but since it was done at a different lab (at the Surgeon's request?, yes I know now that that is not right), I'm not sure if it should be considered. The third PSA was 1.1.

    We had our appointment with the radiation oncologist at the London Regional Cancer Centre on Monday. The treatment suggested is 35 sessions of radiation therapy to the prostate bed and lymph nodes, plus hormone therapy, concurrent I believe, for 6 months.

    Then we were offered a new diagnostic clinical trial, that had just started that day. Only 140 spots total in Canada, Australia and the U.K. (14 in Canada) and we hope to qualify for the no.1 spot (timing is everything). [F-18]-FCH PET and whole body/multiparametric pelvic MRI scan prior to treatment. My understanding is that Choline is used instead of Glucose which doesn't attract prostate cancer cells. This has been offered at the Mayo in MN for approx. 2 years but the radiolabelled tracer had a very short life of 20 mins. I believe this is like the 2nd generation and has a longer life. If I can find a link I will send it. If successful, it will eliminate subjecting patients to radiation and it's side effects unnessessarily when it won't do any good.

    Because it will be carried out very quickly, the oncologist we have, not the same one that's heading the trial, was okay with the timeframe. My husband is having a bone scan tomorrow, a CT scan on Sunday and one more PSA on Tuesday. If the tests still do not show anything and the PSA remains above 1, he will qualify.

    The surgeon we had recommended against radiation at first, then did a flip flop after the MDT came back with their recommendation but did not give any reason why he had changed his mind. I was a little uncomfortable with that.

    The local prostate cancer support group is bringing in another radiation oncologist to speak to the group tomorrow. Perhaps we'll get a moment to get another opinion.

    Mrscaregiver

     

    Choices

    Caregiver,

    Prior to reading Vasco's response to you it struck me that the 35 radiation sessions with Hormonal given simuitaneously is a very sound and aggressive salvage therapy for your husband.  I am wholly unfamiliar with your discussion regarding the scans or the Trial, and cannot comment in that area.

    An oncology surgeon being hesitant regarding RT is classic. This can be true even if he is a stellar, world-class surgeon   Many are not highly familiar with RT techniques.  When I met with my surgeon's nurse prior to RP a few months ago, I mentioned to him (he is an RN, and otherwise seemed extremely knowledgable and experienced)  that before deciding on surgery I had considered IGRT.  He replied that he had no idea what IGRT is.  While he is of course a nurse, I found his response quite surprising for someone who works daily with prostate cancer.  

    It is a lucky patient who has a medical team that understands all treatment options.   I personally would go with the Team's suggestion, and not put too much concern into the surgeon changing his mind regarding RT.

    max

    .

  • mrscaregiver
    mrscaregiver Member Posts: 5
    #6
    VascodaGama said:

    In the right direction

    Mrscaregiver

    I am very glad for the news and to know about your progressive “moves”. You are in the right direction. I sincerely hope that your husband do the F-18 Fluorocholine (FCH) PET exam. Its results will surely influence any decision on the RT scheduling and protocol, but it will be for the best interests of your husband. I would do everything to hold such possibility even if the conditions to qualify do not fit exactly the requirements. I am not sure about the ideal level in PSA for the FCH contrast agent, but I read that some guys did it with a PSA close to 1.5 ng/ml. I know as a fact that these techniques have limitations in the image detection of the cancer and that one is subjected to false negatives at PSA levels lower than 2.0. How far could they wait for your husband’s PSA to reach an higher level, would be playing “roulette”. Here are some reading materials about the exams;

    http://www.ncbi.nlm.nih.gov/pubmed/11150750

    http://interactive.snm.org/docs/PET_PROS/Fluoricholine_07-27-12_Final.pdf

     

    In fact I have been trying to get involved into a similar trial to compare image exams between the test you mention against a newer radiotracer, the Ga-68-NODAGA-MJ9 PET/CT

    https://clinicaltrials.gov/ct2/show/NCT02111954

    Unfortunately my cancer is growing at a slow pace and taking too long to reach the right level of PSA (2.0 to 2.5 ng/ml), which may become too late to still avail the possibility in being included in the trial. The European national health services do not include in their programs these tests because of the costs, and that will be a big blow to my pockets.

     

    The treatment suggested (35 sessions of radiation [+- 70Gy] to the prostate bed and lymph nodes, plus concurrent hormone therapy for 6 months) seems to be the best. The hormonal portion will improve the outcome of the RT. The worse aspect is that the PSA will be “masked” and will take longer to certify success (via the PSA) at the end of the therapy (6 plus 4 months).

    I surprised other survivors have not joined our discussions. I hope guys out there feed in their comments.

    Best wishes in your and your husband’s case.

    VGama 

    New Problem
    Thank you for your replies Max and VGama.

    The tests required to be included in the clinical trial were completed. Everything seemed to be falling into place and we were so happy to have a chance at this opportunity. My husband had the CT scan and the bone scan and another PSA test done. The Radiation Oncologist from London called today (my husband was out, so I took the call) and said he'd reviewed the scans and they still showed nothing (good on both counts). The PSA was the same as last time 1.1 which is good from the standpoint that it did not go up but bad for being included in the study (The PSA needs to be over 1 and have 3 rises no matter how small). He stated that we were still in the time frame to do another PSA test, BUT (this is when the hammer fell), the scan showed that my husband had urine backing up into his kidneys, and that would have to be fixed first. He was very reluctant to give me any more information and said he had spoken with my husband's surgeon and he would be calling.

    Well it was the secretary that called and she had no information, other than to come to the office at 11 a.m. and have nothing to eat or drink. She knew I was not happy about this; I feel the doctor should have called. What do you make of this? Now we will worry all night. But we are between a rock and a hard place as, if it was a surgical error, no one else will want to fix it. Does anyone know what causes this and how it will be fixed, risks etc.? I would really appreciate your comments on any of this.

    The positive thing is Someone is looking out for us, as if the new scan had not been done, we would have not found out about the problem, maybe not until it caused damage.

    You may already be aware of this book. I found it very informative:
    http://malecare.org/advancedpcabookV2.1klgfg0e4w8e4fgjfguifgeiu.pdf

    Regards,
    Mrscaregiver
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    mrscaregiver said:

    New Problem
    Thank you for your replies Max and VGama.

    The tests required to be included in the clinical trial were completed. Everything seemed to be falling into place and we were so happy to have a chance at this opportunity. My husband had the CT scan and the bone scan and another PSA test done. The Radiation Oncologist from London called today (my husband was out, so I took the call) and said he'd reviewed the scans and they still showed nothing (good on both counts). The PSA was the same as last time 1.1 which is good from the standpoint that it did not go up but bad for being included in the study (The PSA needs to be over 1 and have 3 rises no matter how small). He stated that we were still in the time frame to do another PSA test, BUT (this is when the hammer fell), the scan showed that my husband had urine backing up into his kidneys, and that would have to be fixed first. He was very reluctant to give me any more information and said he had spoken with my husband's surgeon and he would be calling.

    Well it was the secretary that called and she had no information, other than to come to the office at 11 a.m. and have nothing to eat or drink. She knew I was not happy about this; I feel the doctor should have called. What do you make of this? Now we will worry all night. But we are between a rock and a hard place as, if it was a surgical error, no one else will want to fix it. Does anyone know what causes this and how it will be fixed, risks etc.? I would really appreciate your comments on any of this.

    The positive thing is Someone is looking out for us, as if the new scan had not been done, we would have not found out about the problem, maybe not until it caused damage.

    You may already be aware of this book. I found it very informative:
    http://malecare.org/advancedpcabookV2.1klgfg0e4w8e4fgjfguifgeiu.pdf

    Regards,
    Mrscaregiver

    How are things advancing?

    I have been waiting for news from you. I wonder if your husband managed to get involved in the trial.

    Can you share any information regarding "The Problem"?

    What did the doctor comment in regards to what they found (urine backing up into his kidneys) in the CT.

    Best wishes,

    VG 

  • mrscaregiver
    mrscaregiver Member Posts: 5
    #8
    VascodaGama said:

    How are things advancing?

    I have been waiting for news from you. I wonder if your husband managed to get involved in the trial.

    Can you share any information regarding "The Problem"?

    What did the doctor comment in regards to what they found (urine backing up into his kidneys) in the CT.

    Best wishes,

    VG 

    Still Waiting

    Hi VG,

     

    Thanks for your reply.

    We had an appointment with the surgeon on February 24th.  The CT scan showed that the kidney was enlarged.  Apparently there is a blockage from the left kidney to the bladder and the surgeon said he is not sure where or what is causing it??  He has scheduled a left pyelogram and ureteral stent on March 6th at 10 am.  If that is not successful, a radiologist, at that same time, will insert a temporary nephrostomy tube, and urine collection bag to drain that kidney. Then another big surgery would have to be booked 3 or 4 weeks later to open him up again to see what's wrong.That's the bad news...two more surgeries!

    I emailed the liaison person in London, wondering how all this affects my husband's ability to stay in the the clinical trial, the radiation therapy, etc. She immediately emailed me back and said we could remain in the clinical trial, but the kidney problem has to be fixed first because of the dye injected for the imaging.  Your kidneys have to be in good shape to expel that.  And we're to keep the appointment in London with the Radiation Oncologist on March 9th.

    That's all the information I have at present.  The good news is that my husband is not having any symptoms.  I will be worried until this procedure is over on Friday and hoping that he won't have to have another surgery.  I will post again after the London appointment on Monday as I hope to have more news by then.

    Best Regards,

    mrscaregiver

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #9
    Unclogging

    MrsCaregiver

    You are right, contrast agents are toxic and our kidney(s) must be able of disposing them out once their job is done. Urine retention may damage the kidney too if that is not resolved the soonest. In any case I hope the cause of the blockage is found and that such is resolved easily. I wonder if your husband had any symptom (even slightly felt) that could be related to this event. Kidney infection (pyelonephritis) could cause the enlargement and be treated with simple medication but it would produce some sort of symptoms like flu-fever or a sensation of urinary urgency which, in fact could be from a kidney stone (calculi).
         Urethral calculi typically accumulate in the uretero-vesical junction (UVJ) close to the iliac and that can be diagnosed in an ultrasound with the help of the pyelogram (retrograde). I cross my fingers for the procedure of Friday to resolve the problem (unclogs the drain) in the moment and that you can avoid the surgical intervention and concentrate on SRT.

    Best wishes for a “big pee” on Friday.

    VG

  • mrscaregiver
    mrscaregiver Member Posts: 5
    #10
    VascodaGama said:

    Unclogging

    MrsCaregiver

    You are right, contrast agents are toxic and our kidney(s) must be able of disposing them out once their job is done. Urine retention may damage the kidney too if that is not resolved the soonest. In any case I hope the cause of the blockage is found and that such is resolved easily. I wonder if your husband had any symptom (even slightly felt) that could be related to this event. Kidney infection (pyelonephritis) could cause the enlargement and be treated with simple medication but it would produce some sort of symptoms like flu-fever or a sensation of urinary urgency which, in fact could be from a kidney stone (calculi).
         Urethral calculi typically accumulate in the uretero-vesical junction (UVJ) close to the iliac and that can be diagnosed in an ultrasound with the help of the pyelogram (retrograde). I cross my fingers for the procedure of Friday to resolve the problem (unclogs the drain) in the moment and that you can avoid the surgical intervention and concentrate on SRT.

    Best wishes for a “big pee” on Friday.

    VG

    Thanks for your good wishes VG,

    Unfortunately the pyelogram showed that the opening was totally closed and doctor could not place the ureteral stent.  He did not do the temporary nephrostomy tube, and urine collection bag to drain that kidney as he was able to get operating room time tomorrow, so my husband is having surgery to correct this (I sure hope so) tomorrow.

    The only good news in all this is that the kidney is still functioning, there will be one less procedure to endure, and we won't have to wait for 3 to 4 extra weeks.

    I have been in constant contact with the co-ordinator of the clinical trial in London and my husband has not lost his spot.  The appointment for the consult with the radiation oncologist which was also tomorrow will have to be postponed.

    mrscaregiver

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #11
    First things first

    I am sorry that the intervention on Friday did not solve the blockage. Most probably the clogging is closer to the kidney (ureteropelvic) but even at that area they may manage to do the job via endoscopic (retrograde) technique, with no cutting. I hope that such is the case and that your husband avoids the unpleasant nephrostomy.

    You sentenced it and I also believe that sometimes we have “…Someone (over there) looking out for us…” I felt the same at the time of my diagnosis, during a critical period of uncertainty. The occurrence may be due to our effort in finding details when confronted with a problem. In any case, you’re doing things rightful. First things first.
     Before SRT it may be opportune also to check the status of the colon (colonoscopy). There have been RT patients reporting on nasty attacks of ulcerative colitis after radiation (SRT). I would like also to suggest you a closer look to the results of lipids (liver, “principles of anemia”, etc).

    Good luck for tomorrow.

    VG

     

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