surgery or radiation?

Mounty
Mounty Member Posts: 42
edited May 2013 in Prostate Cancer #1

I'm a new member of the PC club and I'm  finding this forum very helpful and interesting. I'm hoping to obtain some feedback on treatment options relevant to my specific circumstances, which are as follows:

I'm 61 (I almost wrote "I'm a 61-year old male", then came to my senses) and otherwise healthy. There's a family history of PC (two first-degree relatives). A weak urine stream led to bloodwork in early March and a PSA reading of 34, which was confirmed by another blood draw and reading two days later; a digital rectal exam by a urologist the next day was positive. All fourteen cores of an April 8 biopsy were positive (!), most cores were   60 - 90% malignant; three cores were Gleason grade 3 + 3, five cores were 4 + 5 and the rest were 4 + 4 for an overall Gleason score of 4 + 5.  Two CT scans in March were negative, as was a post-biopsy bone scan (surprisingly, according to a surgeon consulted a few days ago), although a  full bladder from which I could  void just a few cc's at a time partially obscured the pelvic region from the view of the gamma camera.  After learning the diagnosis a week ago I received two injections of digarelix for rapid relief of the urine retention problem, which had rapidly progressed from mild to severe during the past two months.

So I'm in the research and discovery phase before I settle on a therapeutic course of action.  My burning question is, should I go with surgery or radiation therapy + androgen deprivation therapy? My urologist and the radiation oncologist he immediately hooked me up with  - both are non-academic physicians - are recommending radiation and two years of anti-hormone therapy (digarelix). I've reviewed the findings of a Phase III study of digarelix efficacy - it seems like a good approach for knocking down testosterone, and it sure seems to be working for me with regard to urine retention ( I'm no longer considering moving my office desk into the men's room at work).  An academic urology surgeon has indicated that the radiation and hormone regimen  laid out by my current docs is a good one; his argument is: 1. although it may not have mestastisized, given its aggressive nature the tumor likely  extends beyond the prostate (actually, he put the odds at 100%) and it would be difficult to eliminate completely with surgery, and 2. because of the large size of the tumor, surgery would likely leave me incontinent. These seem like convincing arguments, and I'm  impressed by the fact that as a surgeon this doc is turning away business with this recommendation. A second academic surgeon, however, recommends a radical prostatectomy based  on the argument that it would be more effective at eliminating tumor cells and would also eliminate nearby lymph nodes. However, the first surgeon thinks the lymph nodes can be adequately dealt with using radiation. All of these guys are extremely bright and competent with stellar records of success - hence my dilemma. I'm also getting mixed signals from these docs about how urgently (timewise) I should pursue my options and decide how to proceed.

My wife and I are reading up on the subject voraciously and I've scheduled consults with two more surgeons and a radiation oncologist during the next few weeks.  I'll certainly ask them lots of questions. The radiation oncologist (who is at a major cancer center) has also arranged for a second look at the biopsy slides, although I'm reasonably confident  the cores were called correctly the first time. I think it's possible however, that none of these  docs can provide the unique perspective of a well-informed patient (or patient's significant other) who has made their way through the process of being treated. This clearly describes many of you posting to this forum on a regular basis. I realize my dilemma is one that most of us have faced and I'm aware of previous posts that addressed similar questions - but it appears the tumor I've been diagnosed with is especially large and aggressive.  Any thoughts on the best route to take - as well as references to hard data - would be greatly appreciated.

Thanks, and best wishes to you all . . .

 

«13

Comments

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    what to do

    I was prety well in your same predicament but my psa was 110.I had bone scann which were negative and mri and cat scan that showed a hump protruding from prostrate.to make a long story short the local surgeon here said he would not operate as it would be to dangerousand local oncologist said he woud put seeds in and do radiaton also.Iwent to cancer center of america in oklahoma for a second opinion and they said the same thing I would have to have radiation.I took a hormone shot and was going to have to wait 90 days before radiation wouid begin.In the mean time a friend of mine was talking to his urologist about me and the doctor called me and said if you have radiatoin and cancer returns there is not no cure left as you cannot have surgery after radiation. He put me in touch Dr.Seth Lerner at baylor clinic in houstn. He said he would operate but if he operated and found cancer in my lymph nodes he would have to colse me back but they were fine and he removed prostrate with no side effects and reall no pain.everything was fine for about one and half years and my psa rose to .06 and doctor said I would need salvage radition which I did in june 2011.As of feb.2013 my psa was .0003.Thats what I went throug trying to figure out what course to take Ithink Imade the right decision.Hormone therapy is not a cure it just keeps the cancer at bay till at some point the cancer gets imune to the hormone therapy.Thets my story.I know the decision is a hard one to make.I pray you will do fine.

  • Mounty
    Mounty Member Posts: 42
    BLUEpac6 said:

    what to do

    I was prety well in your same predicament but my psa was 110.I had bone scann which were negative and mri and cat scan that showed a hump protruding from prostrate.to make a long story short the local surgeon here said he would not operate as it would be to dangerousand local oncologist said he woud put seeds in and do radiaton also.Iwent to cancer center of america in oklahoma for a second opinion and they said the same thing I would have to have radiation.I took a hormone shot and was going to have to wait 90 days before radiation wouid begin.In the mean time a friend of mine was talking to his urologist about me and the doctor called me and said if you have radiatoin and cancer returns there is not no cure left as you cannot have surgery after radiation. He put me in touch Dr.Seth Lerner at baylor clinic in houstn. He said he would operate but if he operated and found cancer in my lymph nodes he would have to colse me back but they were fine and he removed prostrate with no side effects and reall no pain.everything was fine for about one and half years and my psa rose to .06 and doctor said I would need salvage radition which I did in june 2011.As of feb.2013 my psa was .0003.Thats what I went throug trying to figure out what course to take Ithink Imade the right decision.Hormone therapy is not a cure it just keeps the cancer at bay till at some point the cancer gets imune to the hormone therapy.Thets my story.I know the decision is a hard one to make.I pray you will do fine.

    Thanks Bluepac6 - this is a

    Thanks Bluepac6 - this is a big help.  I'm encouraged by your success story.  I'm still exploring the different options and I've learned  this is all pretty complicated, but knowing that this plan worked for you will help me to decide.

    Best wishes . . .

     

  • tp23
    tp23 Member Posts: 11
    All of the above

    Mounty -

         I was recently diagnosed with prostate cancer.  11 of 12 positive cores with Gleason 8's and 9.  CT scan negative but seminal vesicles most likely invaded.  My urologist immediately placed me on bicalutamide and a few days later I received my first injection of Lupron.  The short term goal as he described it is to shrink the tumor to make it more resectable.  His theory, and mine as well, is remove what you can, and mop up with radiation.  He's stated that the ADT will be long term.  I should add that I just turned 50.  My PSA is only at 4.2 so there are concerns that it isn't a good indicator in my case.  I was suffering from frequent urination, couldn't fully void (Flomax didn't help), at times it was almost painful, like the hold your legs together to hold it in, weak stream, double digit starts/stops, total loss of sexual function (even with Viagra), and pain when sitting.  My urologist told me to expect an imprvement in my symptoms within 2 weeks and that would be a good sign indicating that the tumor is most likely hormone dependent (a good thing).  Well, it's been about 2 weeks now, and I've got to say, my symptoms are all improving.  Stream is full and no pain when sitting.  I've been doing my research too and most everyone I've spoken with and consulted with agree that if you can get it out, do so.  The target will be smaller for raditation and the radical prstatectomy will allow for lymph node investigation and biopsy of the tumor, as well as sampling of the margins.  From what I've read, surgey after radiation is not impossible, but not likely, and some doctors apparently won't perform it.  My urologist also stated that the lymph nodes would be removed and tested first, and if found positive, he would not continue.  He told me that podst op radiation would be like an insurance policy, and given the aggressiveness of the 8-9, should be part of my treatment.  No negative effects from any of the medications thus far.  One very informative source for me was NCCN.org.  You may want to give it a once over.

    Good Luck - My best wishes for you & your family

  • Rickey001
    Rickey001 Member Posts: 4
    Similar choice

    I also had the same choice to make that you are having to do. After talking to both the Surgeon and the Radiation Oncologist(who both said I would get better results fron radiation)I began a series of 45 concentrated radiation treaments, that began in 12/2011. The radiation was directed toward only the tumor on my prostate. After the radiation treatments, I then began Elegard injections every 4 months. Currently my PSA's are as close to 0 as is statistically possible. I get my 5th Elegard shot later this month.

    The radiation treatments were brief and there was no overt discomfort from the radiation per se. The thing that got me was they made me drink at least 24-30 ounces of water about 30 minutes prior to the treatment. I was having trouble holding my water anyway,due to the cancer, so you can imagine what it felt like if there was any delay what so ever in getting the treatment. After the treatment, I literally ran to the bath room.Wink

    The follow-up homone therapy does have some very aggravating side effects: easy fatigue,loss of sexual desire with erectile dysfunction, hot flashes, mood swings and depression. My wife says it's like going through Menopause.

    I dont know if this helps any. I am attaching an article for you read, concerning radiation followed by homone treatments, which might be helpul.

    Best Wishes..

    Radiation Plus Hormone Therapy Extends Life in High-Risk Prostate Cancer


    But, surgery might even improve survival more, expert says

    By Steven Reinberg
    HealthDay Reporter

    WEDNESDAY, Nov. 2 (HealthDay News) -- A combination of radiation and hormone therapy prolongs survival among men whose cancer has spread beyond the prostate, Canadian and U.K. researchers report.

    These men have what is called high-risk, or locally advanced, prostate cancer. Among men with prostrate cancer, up to 25 percent fall into this category. In the past, these men have often been treated with hormone therapy alone, the researchers noted.

    "In patients with locally advanced prostate cancer, combining radiation therapy plus hormonal therapy gives much better results than hormone therapy alone," said lead researcher Dr. Padraig Warde, deputy head of the Princess Margaret Hospital Cancer Program and a professor of radiation oncology at the University of Toronto.

    "Specifically, it reduces the risk of dying from prostate cancer 43 percent and the risk of dying overall by 23 percent," he said, adding that this is the first study that shows that the combination of radiation and hormone therapy improves survival.

    "These patients were often felt, in the past, to be incurable, because the disease has spread locally outside of the prostate, but not elsewhere in the body," he said. "But they shouldn't be discarded, we are showing that going for a cure is worthwhile."

    Treatment options for patients with locally advanced prostate cancer are limited, Warde said. Most of these patients are not candidates for surgery because of the size of their tumors, he said.

    The report was published in the Nov. 3 issue of The Lancet.

    For the study, Warde's team randomly assigned more than 1,200 men with high-risk prostate cancer to hormone therapy alone or in combination with radiation.

    After seven years, 66 percent of men who had hormone therapy alone were still alive, compared with 74 percent who received both hormone and radiation therapy. In the group of men who had hormone therapy alone 26 percent died from prostate cancer, compared with 10 percent who had combination therapy, the researchers found.

    Warde noted that while men had the predicted side effects of hormone therapy, such as erectile dysfunction, hot flashes and mood swings, the addition of radiation did not affect overall quality of life three years after treatment.

    When the study began in 1995, the protocol was to use hormone therapy for life, and radiation was given in lower doses, but not as precisely directed as it is today, Warde said. Currently, hormone therapy is used for a shorter time, usually two to three years, and radiation is given in higher doses but more specifically targeted to the tumor.

    "There is reason to think that with modern radiation approaches that the results would be much better," he said.

    Prostate cancer expert Dr. Anthony D'Amico, chief of radiation oncology at Brigham and Women's Hospital in Boston, said that "this doesn't change practice, because we already do this, but it's a validation that you cannot leave out one or the other treatment when treating someone with locally advanced disease."

    Dr. Matthew R. Cooperberg, an assistant professor of urology at the University of California, San Francisco, and author of an accompanying journal editorial, said that "high-risk disease needs to be treated aggressively."

    However, this study doesn't determine what is the best treatment for high-risk prostate cancer, Cooperberg said. "There are studies showing that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he noted.

    "Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."

    These patients are not candidates for what is called active surveillance, where doctors wait for the disease to advance before treating it, Cooperberg said.

    Cooperberg also noted that the urinary side effects from radiation are not as mild as the study suggests, and can, for some patients, be severe


  • Mounty
    Mounty Member Posts: 42
    tp23 said:

    All of the above

    Mounty -

         I was recently diagnosed with prostate cancer.  11 of 12 positive cores with Gleason 8's and 9.  CT scan negative but seminal vesicles most likely invaded.  My urologist immediately placed me on bicalutamide and a few days later I received my first injection of Lupron.  The short term goal as he described it is to shrink the tumor to make it more resectable.  His theory, and mine as well, is remove what you can, and mop up with radiation.  He's stated that the ADT will be long term.  I should add that I just turned 50.  My PSA is only at 4.2 so there are concerns that it isn't a good indicator in my case.  I was suffering from frequent urination, couldn't fully void (Flomax didn't help), at times it was almost painful, like the hold your legs together to hold it in, weak stream, double digit starts/stops, total loss of sexual function (even with Viagra), and pain when sitting.  My urologist told me to expect an imprvement in my symptoms within 2 weeks and that would be a good sign indicating that the tumor is most likely hormone dependent (a good thing).  Well, it's been about 2 weeks now, and I've got to say, my symptoms are all improving.  Stream is full and no pain when sitting.  I've been doing my research too and most everyone I've spoken with and consulted with agree that if you can get it out, do so.  The target will be smaller for raditation and the radical prstatectomy will allow for lymph node investigation and biopsy of the tumor, as well as sampling of the margins.  From what I've read, surgey after radiation is not impossible, but not likely, and some doctors apparently won't perform it.  My urologist also stated that the lymph nodes would be removed and tested first, and if found positive, he would not continue.  He told me that podst op radiation would be like an insurance policy, and given the aggressiveness of the 8-9, should be part of my treatment.  No negative effects from any of the medications thus far.  One very informative source for me was NCCN.org.  You may want to give it a once over.

    Good Luck - My best wishes for you & your family

    Thanks TP,

    Your post is also really helpful, especially because you're in about the same boat I am with regard to high Gleason score and a large number of positive cores.

    The radiation oncologist I met with yesterday (after my first post the day before) made a similar recommendation for surgery. So now I have a recommendation for radiation from a surgeon and for surgery from a radiologist! At least I know their advice is not tainted by financial considerations. Once again, both these guys are really smart - I think their different suggestions highlight the complexity of the problem.

    In fact the radiation oncologist's recommendation yesterday was very similar to the recommendation you received - androgen deprivation therapy followed by surgery followed by radiation and more ADT. I'm beginning to think - and your post  reinforces this notion - that this might be the best approach for those of us with high grade localized disease, although I also realize that everybody's case is different and nobody has the same disease.

    Unlike the community practice radiation oncologist I consulted with earlier, this one works at a large academic cancer center (actually, one of the members of the NCCN) and in the past he's participated in the development each year of the annual guidelines for prostate cancer treatment by the National Cancer Institute. You might be interested to hear that he told me the next set of guidelines will be published soon and he thinks it may recommend intermittent hormone therapy (or perhaps shorter term ADT) as a way to reduce the potential for the development of ADT-refractory disease in the longer term. I plan to follow this closely and will post information once the new guidelines are issued.

    Boy do I sympathize with your description of pre-ADT problems peeing.  It was a a big relief (no pun intended) how quickly the first ADT injections fixed that problem for me.

    Good luck -  I'll be looking forward to hearing how it all works out for you.

     

     

  • tp23
    tp23 Member Posts: 11
    Second Opinion

    Mounty -

         While I wish our circumstances on no one, it is reassuring and helpful knowing the recommendations that others facing similar challenges are receiving from completely unrelated, independent, health care professionals, even from different specialties.  I find the differing recommendations from your urologist and radiological oncologist refreshing in the sense that both truly seem to be putting your interests first and foremost.  Not even from just the financial standpoint, but from the philosophical aspect.  I'm sure other doctors might believe their specialty superior.  I have a consultation scheduled with a urological oncologist at a University cancer center in about a week.  While I have already decided on my current course of treatment and urologist, I would like to affirm my decision with another opinion and gather even more information on the treatment options available to me after the surgery, especially those that might only be available at a facility specializing in cancer treatment.  I hope to hear of your success story in the near future.

  • Mounty
    Mounty Member Posts: 42
    Rickey001 said:

    Similar choice

    I also had the same choice to make that you are having to do. After talking to both the Surgeon and the Radiation Oncologist(who both said I would get better results fron radiation)I began a series of 45 concentrated radiation treaments, that began in 12/2011. The radiation was directed toward only the tumor on my prostate. After the radiation treatments, I then began Elegard injections every 4 months. Currently my PSA's are as close to 0 as is statistically possible. I get my 5th Elegard shot later this month.

    The radiation treatments were brief and there was no overt discomfort from the radiation per se. The thing that got me was they made me drink at least 24-30 ounces of water about 30 minutes prior to the treatment. I was having trouble holding my water anyway,due to the cancer, so you can imagine what it felt like if there was any delay what so ever in getting the treatment. After the treatment, I literally ran to the bath room.Wink

    The follow-up homone therapy does have some very aggravating side effects: easy fatigue,loss of sexual desire with erectile dysfunction, hot flashes, mood swings and depression. My wife says it's like going through Menopause.

    I dont know if this helps any. I am attaching an article for you read, concerning radiation followed by homone treatments, which might be helpul.

    Best Wishes..

    Radiation Plus Hormone Therapy Extends Life in High-Risk Prostate Cancer


    But, surgery might even improve survival more, expert says

    By Steven Reinberg
    HealthDay Reporter

    WEDNESDAY, Nov. 2 (HealthDay News) -- A combination of radiation and hormone therapy prolongs survival among men whose cancer has spread beyond the prostate, Canadian and U.K. researchers report.

    These men have what is called high-risk, or locally advanced, prostate cancer. Among men with prostrate cancer, up to 25 percent fall into this category. In the past, these men have often been treated with hormone therapy alone, the researchers noted.

    "In patients with locally advanced prostate cancer, combining radiation therapy plus hormonal therapy gives much better results than hormone therapy alone," said lead researcher Dr. Padraig Warde, deputy head of the Princess Margaret Hospital Cancer Program and a professor of radiation oncology at the University of Toronto.

    "Specifically, it reduces the risk of dying from prostate cancer 43 percent and the risk of dying overall by 23 percent," he said, adding that this is the first study that shows that the combination of radiation and hormone therapy improves survival.

    "These patients were often felt, in the past, to be incurable, because the disease has spread locally outside of the prostate, but not elsewhere in the body," he said. "But they shouldn't be discarded, we are showing that going for a cure is worthwhile."

    Treatment options for patients with locally advanced prostate cancer are limited, Warde said. Most of these patients are not candidates for surgery because of the size of their tumors, he said.

    The report was published in the Nov. 3 issue of The Lancet.

    For the study, Warde's team randomly assigned more than 1,200 men with high-risk prostate cancer to hormone therapy alone or in combination with radiation.

    After seven years, 66 percent of men who had hormone therapy alone were still alive, compared with 74 percent who received both hormone and radiation therapy. In the group of men who had hormone therapy alone 26 percent died from prostate cancer, compared with 10 percent who had combination therapy, the researchers found.

    Warde noted that while men had the predicted side effects of hormone therapy, such as erectile dysfunction, hot flashes and mood swings, the addition of radiation did not affect overall quality of life three years after treatment.

    When the study began in 1995, the protocol was to use hormone therapy for life, and radiation was given in lower doses, but not as precisely directed as it is today, Warde said. Currently, hormone therapy is used for a shorter time, usually two to three years, and radiation is given in higher doses but more specifically targeted to the tumor.

    "There is reason to think that with modern radiation approaches that the results would be much better," he said.

    Prostate cancer expert Dr. Anthony D'Amico, chief of radiation oncology at Brigham and Women's Hospital in Boston, said that "this doesn't change practice, because we already do this, but it's a validation that you cannot leave out one or the other treatment when treating someone with locally advanced disease."

    Dr. Matthew R. Cooperberg, an assistant professor of urology at the University of California, San Francisco, and author of an accompanying journal editorial, said that "high-risk disease needs to be treated aggressively."

    However, this study doesn't determine what is the best treatment for high-risk prostate cancer, Cooperberg said. "There are studies showing that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he noted.

    "Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."

    These patients are not candidates for what is called active surveillance, where doctors wait for the disease to advance before treating it, Cooperberg said.

    Cooperberg also noted that the urinary side effects from radiation are not as mild as the study suggests, and can, for some patients, be severe


    Thanks Rickey, in fact this does help. I'm not a candidate for hormone therapy by itself over the long term (at least not yet) but it's good to know the combination of radiation and hormone therapy can be pretty effective.

    I'm jealous of your statistically close to 0 PSA, and I hope it stays that way. 

    So far I've been lucky to have avoided most of the side effects of ADT.  I almost peed in my pants though when I read  you have to drink up to 30 ounces of water.   Sympathetic reaction I guess . . .

    Best wishes

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    tp23 said:

    Second Opinion

    Mounty -

         While I wish our circumstances on no one, it is reassuring and helpful knowing the recommendations that others facing similar challenges are receiving from completely unrelated, independent, health care professionals, even from different specialties.  I find the differing recommendations from your urologist and radiological oncologist refreshing in the sense that both truly seem to be putting your interests first and foremost.  Not even from just the financial standpoint, but from the philosophical aspect.  I'm sure other doctors might believe their specialty superior.  I have a consultation scheduled with a urological oncologist at a University cancer center in about a week.  While I have already decided on my current course of treatment and urologist, I would like to affirm my decision with another opinion and gather even more information on the treatment options available to me after the surgery, especially those that might only be available at a facility specializing in cancer treatment.  I hope to hear of your success story in the near future.

    medical oncologist

    I am sorry for your diagnosis.

    Not much to ad, but I suggest that you find a medical oncologist , the best that you can find to lead your medical team. Actually there are about 50 in the United States that specialize only in prostate cancer.

    Remember that there are local support groups that you and your wife can attend....USToo and MAN TO MAN are two international support groups that you can google to determine a meeting time.

    A good idea is to post your geographic location here..........hopefully others in your area can give direction of the best docs in your area.

    Obviously you are doing research, continue......read books, internet, continue interviewing doctors.........and read some more.

     

     

  • Mounty
    Mounty Member Posts: 42
    tp23 said:

    Second Opinion

    Mounty -

         While I wish our circumstances on no one, it is reassuring and helpful knowing the recommendations that others facing similar challenges are receiving from completely unrelated, independent, health care professionals, even from different specialties.  I find the differing recommendations from your urologist and radiological oncologist refreshing in the sense that both truly seem to be putting your interests first and foremost.  Not even from just the financial standpoint, but from the philosophical aspect.  I'm sure other doctors might believe their specialty superior.  I have a consultation scheduled with a urological oncologist at a University cancer center in about a week.  While I have already decided on my current course of treatment and urologist, I would like to affirm my decision with another opinion and gather even more information on the treatment options available to me after the surgery, especially those that might only be available at a facility specializing in cancer treatment.  I hope to hear of your success story in the near future.

    Thanks again TP,

    Your insights into the differing opinions I've received is right on the mark.  I think the disagreement between these docs about treatment plans  is mostly related to the relatively few patients they treat with more advanced disease, which makes it more difficult for them to know for sure how to proceed.

    Under the circumstances, the more information the better of course. If you're up to it, I would like to hear what the urological oncologist you will visit later this week has to say.  I'm scheduled for a consult with a urological oncologist at a university cancer center (not the same one I visited last week) on Thursday and I'll post what I learn on Friday after I return home.

    I learned something else at my consult last Friday that might be useful to know. Although the community practice urologist I've been seeing did a great job with the biopsy, he made some serious mistakes in other respects , none of which will have negative effects in the long term, but they could have if they had not been caught by the academic cancer center oncologist I met with on Friday. I won't be going back.  I'm sure there are community practice physicians who are up to the job, but for guys with our parameters, I think it's a good idea to look for treatment by doctors at a major academic cancer center if this is possible.  I suspect you knew this before I did, but in case not . . .

    I've read other posts you've made for other members and they've also  been helpful.

    Take care

     

  • Mounty
    Mounty Member Posts: 42

    medical oncologist

    I am sorry for your diagnosis.

    Not much to ad, but I suggest that you find a medical oncologist , the best that you can find to lead your medical team. Actually there are about 50 in the United States that specialize only in prostate cancer.

    Remember that there are local support groups that you and your wife can attend....USToo and MAN TO MAN are two international support groups that you can google to determine a meeting time.

    A good idea is to post your geographic location here..........hopefully others in your area can give direction of the best docs in your area.

    Obviously you are doing research, continue......read books, internet, continue interviewing doctors.........and read some more.

     

     

    Thanks for your advice Hopeful.  I met with a medical oncologist last week to discuss possible participation in a clinical trial that involves chemotherapy but he did not propose treating me if I decided against participating. In fact I'm doctorless at the moment and I will explore the feasibility of your suggestion to hire a medical oncologist thoroughly (and I'll also check out support groups).

    At the moment I'm reading "Dr. Walsh's Guide to Surviving Prostate Cancer", which my wife bought for me. As you probably know better than most (considering how long you've been an active member of the forum), this book has been mentioned in other posts as well.  Although I suspect there are other books out there that are equally as good, reading this one has been a valuable exercise and I recommend it to anyone reading these posts, especially if they're also newly diagnosed. It's clearly written, has detailed information about many aspects of diagnosis and treatment and it's answering a lot of my questions - sort of like a consult with a physician that lasts two days instead of an hour or two (and is cheaper!). This is beginning to sound like a commissioned book jacket blurb so let me just say that I had never heard of Patrick Walsh or his book until it arrived at my doorstep a few days ago.

    Thanks again, and best wishes . . .

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Mounty said:

    Thanks again TP,

    Your insights into the differing opinions I've received is right on the mark.  I think the disagreement between these docs about treatment plans  is mostly related to the relatively few patients they treat with more advanced disease, which makes it more difficult for them to know for sure how to proceed.

    Under the circumstances, the more information the better of course. If you're up to it, I would like to hear what the urological oncologist you will visit later this week has to say.  I'm scheduled for a consult with a urological oncologist at a university cancer center (not the same one I visited last week) on Thursday and I'll post what I learn on Friday after I return home.

    I learned something else at my consult last Friday that might be useful to know. Although the community practice urologist I've been seeing did a great job with the biopsy, he made some serious mistakes in other respects , none of which will have negative effects in the long term, but they could have if they had not been caught by the academic cancer center oncologist I met with on Friday. I won't be going back.  I'm sure there are community practice physicians who are up to the job, but for guys with our parameters, I think it's a good idea to look for treatment by doctors at a major academic cancer center if this is possible.  I suspect you knew this before I did, but in case not . . .

    I've read other posts you've made for other members and they've also  been helpful.

    Take care

     

    Here's a thread that is germaine to you.

    http://csn.cancer.org/node/257782

     

    Except for some exceptions, in my opinion most  academic center iare the best place for treatment...overall best docs and facilities....you are making some good choices...you will do fine.......

    US news and report ranks hospitals by specialty.....you can google this

  • tp23
    tp23 Member Posts: 11
    Mistakes

    Mounty -

         If you wouldn't mind sharing, what types of mistakes did your original urologist make?  I'm relieved to know that it will not affect you in the long run, but I'd just like to know what I might want to watch out for.

         I'd be happy to fill you in with any new information I learn after next week's mtg with the urologic oncologist and would welcome the same from any consults you arrange.

     

    Hope all is well for now.  How's your wife and family holding up?

  • Mounty
    Mounty Member Posts: 42

    Here's a thread that is germaine to you.

    http://csn.cancer.org/node/257782

     

    Except for some exceptions, in my opinion most  academic center iare the best place for treatment...overall best docs and facilities....you are making some good choices...you will do fine.......

    US news and report ranks hospitals by specialty.....you can google this

    Thanks Hopeful; this was a valuable thread considering how similar Kc's husband's cancer profile is to mine and a few other members of this forum. Kc's wife hasn't posted again since her original post. I hope things are going well for them.

    I'm familiar with the U.S. News and World Report rankings. There's been some discussion of the validity of these rankings and I'm somewhat skeptical.  Other rankings from the National Institute of Health may be more accurate.  I'll try to dig this information out and post it in the next few days.

    Best wishes

  • Mounty
    Mounty Member Posts: 42
    tp23 said:

    Mistakes

    Mounty -

         If you wouldn't mind sharing, what types of mistakes did your original urologist make?  I'm relieved to know that it will not affect you in the long run, but I'd just like to know what I might want to watch out for.

         I'd be happy to fill you in with any new information I learn after next week's mtg with the urologic oncologist and would welcome the same from any consults you arrange.

     

    Hope all is well for now.  How's your wife and family holding up?

    Hi Tp:

    Apparently my urologist without much evidence initially concluded that benign prostatic hyperplasia (BPH) was the cause of the hematuria and high PSA detected in my initial bloodwork. The studies he performed were focused on testing this possibility, despite my extensive family history of PC and what he described as a "somewhat firm" prostate (which was subsequently described by another urologist as "extremely impressive and extremely hard") (I always wanted to be impressive at something). Consequently the first urologist neglected to perform studies that would more adequately address the possibility of cancer  until he eventually performed a biopsy. This left holes in my medical history that other physicians now must fill. No long term problems, but in the short term I was left with an extreme urination blockage problem that was treated with drugs for BPH that were totally ineffective, including during a period of two weeks after the biopsy. Although the biopsy results arrived in this physician's office 2 days post biopsy, the diagnosis was made and treatment initiated two weeks later. None of these specific problems should effect you since you already have your diagnosis. They suggest however a certain amount of carelessness that I think is less likely to occur at a major cancer center where you're more likely to be treated by a team of physicians.

     I had to cancel my consult scheduled for Thursday but I'm on track for an MRI in the morning ordered by one of the physicians I consulted last week.  I'll post the outcome since it might be informative for you.

    My family (wife and two daughters in their early - mid twenties) are handling all the commotion well. That's not to say that it isn't tough for them, but my spouse is incredibly supportive and we're both working hard to make it easier for our kids by accentuating the positive. You're quite a bit younger if I remember correctly and I think I recall reading in a post you made in another thread that you have children too.  How are they doing?  There aren't many posts that I've found that deal with the impact of PC on our kids - this might be worth talking about at some point.

    I hope you and your family are well and I'm looking forward to hearing about your results.

    Take care

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Mounty said:

    Hi Tp:

    Apparently my urologist without much evidence initially concluded that benign prostatic hyperplasia (BPH) was the cause of the hematuria and high PSA detected in my initial bloodwork. The studies he performed were focused on testing this possibility, despite my extensive family history of PC and what he described as a "somewhat firm" prostate (which was subsequently described by another urologist as "extremely impressive and extremely hard") (I always wanted to be impressive at something). Consequently the first urologist neglected to perform studies that would more adequately address the possibility of cancer  until he eventually performed a biopsy. This left holes in my medical history that other physicians now must fill. No long term problems, but in the short term I was left with an extreme urination blockage problem that was treated with drugs for BPH that were totally ineffective, including during a period of two weeks after the biopsy. Although the biopsy results arrived in this physician's office 2 days post biopsy, the diagnosis was made and treatment initiated two weeks later. None of these specific problems should effect you since you already have your diagnosis. They suggest however a certain amount of carelessness that I think is less likely to occur at a major cancer center where you're more likely to be treated by a team of physicians.

     I had to cancel my consult scheduled for Thursday but I'm on track for an MRI in the morning ordered by one of the physicians I consulted last week.  I'll post the outcome since it might be informative for you.

    My family (wife and two daughters in their early - mid twenties) are handling all the commotion well. That's not to say that it isn't tough for them, but my spouse is incredibly supportive and we're both working hard to make it easier for our kids by accentuating the positive. You're quite a bit younger if I remember correctly and I think I recall reading in a post you made in another thread that you have children too.  How are they doing?  There aren't many posts that I've found that deal with the impact of PC on our kids - this might be worth talking about at some point.

    I hope you and your family are well and I'm looking forward to hearing about your results.

    Take care

    Will this MRI in the morning

    have a Tesla 3.0 magnet?

  • Mounty
    Mounty Member Posts: 42
    Mounty said:

    Hi Tp:

    Apparently my urologist without much evidence initially concluded that benign prostatic hyperplasia (BPH) was the cause of the hematuria and high PSA detected in my initial bloodwork. The studies he performed were focused on testing this possibility, despite my extensive family history of PC and what he described as a "somewhat firm" prostate (which was subsequently described by another urologist as "extremely impressive and extremely hard") (I always wanted to be impressive at something). Consequently the first urologist neglected to perform studies that would more adequately address the possibility of cancer  until he eventually performed a biopsy. This left holes in my medical history that other physicians now must fill. No long term problems, but in the short term I was left with an extreme urination blockage problem that was treated with drugs for BPH that were totally ineffective, including during a period of two weeks after the biopsy. Although the biopsy results arrived in this physician's office 2 days post biopsy, the diagnosis was made and treatment initiated two weeks later. None of these specific problems should effect you since you already have your diagnosis. They suggest however a certain amount of carelessness that I think is less likely to occur at a major cancer center where you're more likely to be treated by a team of physicians.

     I had to cancel my consult scheduled for Thursday but I'm on track for an MRI in the morning ordered by one of the physicians I consulted last week.  I'll post the outcome since it might be informative for you.

    My family (wife and two daughters in their early - mid twenties) are handling all the commotion well. That's not to say that it isn't tough for them, but my spouse is incredibly supportive and we're both working hard to make it easier for our kids by accentuating the positive. You're quite a bit younger if I remember correctly and I think I recall reading in a post you made in another thread that you have children too.  How are they doing?  There aren't many posts that I've found that deal with the impact of PC on our kids - this might be worth talking about at some point.

    I hope you and your family are well and I'm looking forward to hearing about your results.

    Take care

    update

    Tp,

    When I showed up for the MRI this morning I discovered it was scheduled for yesterday, not today, so I must wait until Monday for the next chance. I would like to blame this on  cognitive decline associated with the ADT drug I've been warned about but in fact I have no excuse. I'll let you know next week; good luck with your appointments and please post the outcome.

    Hopeful, I think it's a Tesla 3 imager (I hope it is) but I'm not sure.

    Take care

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Mounty said:

    update

    Tp,

    When I showed up for the MRI this morning I discovered it was scheduled for yesterday, not today, so I must wait until Monday for the next chance. I would like to blame this on  cognitive decline associated with the ADT drug I've been warned about but in fact I have no excuse. I'll let you know next week; good luck with your appointments and please post the outcome.

    Hopeful, I think it's a Tesla 3 imager (I hope it is) but I'm not sure.

    Take care

    Well


     MRI  with a 3.o Tesla Magnet provides superior resolution that could substantially improve prostate cancer detection. Will a multi parametric MRI be performed?......Mounty, suggest that you call your doctor.

     



  • Samsungtech1
    Samsungtech1 Member Posts: 351
    Treatments

    Had Sam conditions as you.  Urologist said surgery, radiation,and whatever.  Had surgery, broad spectrum radiation for bladder, biopsy for nodules in lungs, radiation for nodules in lungs, radiosurgery, and then HT treatment with Digarleix.  Currently PSA at 0.000.  Been on HT for a year now.  Not sure wheit cancer will figure outs a way around it, hopefully awhile. 

    Everyone is different.  It worked for me, but that is just me, and we knew it had spread. If it has not spread to lymph nodes you have a good chance.  

    Mike

  • tp23
    tp23 Member Posts: 11
    Family Matters

    Mounty -

         Your memory's not so bad after all - I just turned 50.  3 children - daughter & 2 sons, 25-21-16.  The news hit both my wife and I pretty hard - a lot of sleepness nights at first.  We sat the kids down and briefed them - less the nastiest of details.  With boys it's tough to tell what's going on - we generally don't open up about much unless provoked.  According to my wife, the youngest went online to research what we were talking about but hasn't posed any questions to me.  He's at that age when teens don't want to speak with their parents because it just isn't cool - so the silence for me, except for the joking and ridicule, is normalcy.  With my older son, I'd rather sit down and watch a show we both enjoy and share a laugh or two - it helps take the mind off reality for a few minutes.  My daughter's reaction perplexes me.  She is a physical therapist so she is familiar with the medical field - 3 years of medical school will do that.  I know her and my wife have discussed the details and cryed their way through, but she refuses to spend time reading up the way we have.  She's told my wife she doesn't want to know the data and statistics.  She trusts that we've done enough research for all of us, that we're making the best decisions we can, and just wants to know what she can do to help.  Interestingly enough, when we were speaking one night, I was asking about exercises for prostate cancer patients - I read that there are some recomended exercises to help improve continence and general receovery (Kegels, mild core strengthening, etc.).  She mentioned that one of her clincal rotations included a stint at a hospital doing in-patient work where she found that there is a whole discipline of physical therapy associated with urology patients to aid in recovery and quality of life.  My wife has come around.  She wants to focus on the short term - no more crying.  We're digesting all available info, making decisions, and moving forward one day at a time.  We really don't have a full picture just yet anyway - probably won't until the prostatectomy's done & the path report comes back.  Long & short of it, everybody has to deal with this harsh reality in their own way.  I don't think I personally bottomed out emotionally yet.  I refuse to slow down and give in, mentally or physically.  I've got to work hard to provide for my family, probably even more so now.  Once surgery comes along and other treatments are required, I might not be able to work at full potential.  Slight setback for my wife though.  Her brother was just diagnosed with tonsil cancer last week and had surgery today.  Petscan showed cancer contained within tonsils & lymph nodes, so they think they got it all.  When it rains it pours I guess.  Sorry to bore you with all these details, but to be honest, checking this thread has become a bit of a respite for me.  Let's call it cheap therapy!

  • Mounty
    Mounty Member Posts: 42

    Well



     MRI  with a 3.o Tesla Magnet provides superior resolution that could substantially improve prostate cancer detection. Will a multi parametric MRI be performed?......Mounty, suggest that you call your doctor.

     



    MRI

    Hopeful,

    Your posts convinced me I needed to look more carefully at this issue and so I did;  as a consequence I canceled the MRI rescheduled for next Monday, which would have been on a 1.5-tesla machine, until I've had my next consult.  It's absolutely clear that 3.0-tesla MRI provides superior resolution and can impact outcome for patients with low or intermediate risk disease, although my reading of the literature is that the jury is still out on whether multi-parametric MRI is even better.  What's not clear to me yet is how important high-resolution MRI is for a high-risk patient like me who almost certainly has extraprostatic disease with a likelihood of micrometastases as well. How do you think the information it would provide would impact a treatment decision under these circumstances?