How do I find a good doctor?

The one I currently have does not return emails, has not presented any treatment plan, and his favorite thing to say seems to be " Let's wait and see what happens." The actual treatment I have received so far seems close enough to good (docetaxel and ADT, and now Provenge), but he seems wiling to try a succession of failing treatments and then help select the coffin.

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  • I have to pass this on...my first uro/onc group, I was with for the first six years. I was in such pain, I didn't know what to do. I assumed it was the cancer, and was going to have to deal with it. After the hospital stay, I decided to move on to another group. When I got the copies of my records for the new group, i was quite surprised to find out that my bladder was blocked. The hospital stay was in April this year, my blockage was noted way back in Feb 2013. Thing is, nobody told me about it, let alone treating it. Proof that we are our best medical manager.

  • Where do you live? A second opinion is always a good idea. Even a third opinion. Most insurance will pay for second opinion if that is an issue. If not, ask friends for a referral to a MEDICAL oncologist that specializes in PCa. Urologists do surgery. Another source is your primary care internist. Or ask a nurse. They know lots of doctors and which ones are good. Good luck to you.

    My husband was first diagnosed in 2001. He is now stage 4 with bone mets over 99%. Xofigo knocked it backed and gave him a great 11 months extra. Things are a little tougher now so Cyberknife is helping with pain. We have a wonderful group of doctors who work together to keep him up and pain controlled.

    Good Luck to you. Don't lose heart.

    We live in San Diego

    Wifeinjamul

  • Yes. My nieces father is a doctor. I will ask him.

  • Did you see this trial? NCT02478125

  • I just reviewed the trial specifics. Jim would not meet the criteria as he has already had seed implants, doctaxel and lupron therapies as well as Xofigo. He could possibly have another round of chemo but he may not tolerate that well in his present condition.

  • Thank you for taking the time to look. I think the trial is a great idea but is having trouble it seems recruiting suitable patients. They have the "must be eligible for chemo" as a requirement (i am pretty sure) beacause cancer cells will be moved from the bones into the blood stream (that great combined storm/sewer system) and they want to be able to kill the cells that might linger there using chemo. Chemo is aimed at dividing cells, so how the two fit together is a little vague to me, but so are many things.

  • Go to any of the great teaching hospital such as Duke (where I go) or Johns Hopkins or Mayo Clinic or UC San Fransisco; you get the picture. Where do you live? Be sure that a Medical Oncologist is calling the shots, not a Urologist.

  • > Go to any of the great teaching hospitals ...

    I think that's an excellent suggestion. In the U.S., the National Cancer Institute maintains a list of their "Designated cancer centers" that they believe are leaders in cancer research. See: cancer.gov/research/nci-rol...

    I think a lot of the smartest and most up-to-date doctors apply for jobs at these hospitals, where they get to do research as well as treatment. Not only are these people good, they have good colleagues to consult with.

    Of course there are probably some screwballs at every hospital.

    Alan

  • Well, the primary one I go to locally is on that list, unfortunately. It could be that my negotiating skills suck, but I think it is that we have different "visions", and incompatible ones. I dream of converting my mCRPC to a chronic disease, and they dream of delivering evidence-based state of the art care. The evidence-based state of the art for mCRPC is that he kaplan-meyer chart hits the horizontal axis, at which point you are denied further care.

    My bone mets have become undetecable by T99. I'd like to get the CTCs out of my bloodstrem. Hoping Provenge will help with that. Then I would like to get a prostate transplant. Is that asking too much?

  • I've never heard of a prostate transplant. I doubt if one has ever been done. I think that's probably asking too much. As for the circulating tumor cells, I suspect they disappear if and when the solid tumors that generate them are defeated. In one of his articles, Dr. Snuffy Myers said the CTCs could still be found after his successful radiation treatment, but could no longer be detected one year later.

    As for the Provenge, it seems conceivable to me that it will do what you're hoping for. It's certainly no guarantee and I suspect that the odds are not terriffic, but you have a fighting chance. With your mets now undetectable and I presume your PSA is way down, your immune system doesn't have to conquer a raging replicating and mutating cancer. It only has to smack down a relatively small number of tumor cells, many of which may already be damaged, and keep on top of any that still survive. I think the results of the Provenge could be way better than they were for the castration resistant, chemotherapy resistant tumors that were common in the clinical trials.

    I think you have a real chance to achieve your goal of a chronic disease with few or no symptoms. Your doc may not like to talk about it, not because he thinks it can't happen, but because he doesn't want to get hopes higher than he can be sure of delivering on.

    In any case, don't forget to enjoy life. Sometimes I think we get so focused on our illness that we forget why we want to beat it and live.

    Best of luck.

    Alan

  • Thanks for your kind comments. I find this cancer stuff mentaly challenging, and a worthwhile topic to be involved in. I have heard and met many very cool people many of whom are far more engaged and serious than I am, and who are earnestly trying to take this disease apart bit by bit.

  • I want to second the motion on Alan's comments in his last 2 paragraphs. Most doctors give cancer patients a conservative, even gloomy, interpretation of their situation, to lower their expectations. I don't think that's good for us patients, but it makes the doctors feel more protected.

    The best advice I ever got after my diagnosis was to HAVE FUN! At first I thought only alternative medicine folks believed that keeping your pleasure hormones up & your stress hormones down actually helps you fight cancer & live longer. But then I found out that the conventional doctors believe that too. I feel like retiring & having more fun has extended my life, & it's most certainly made it more enjoyable!

  • University of Washington in Seattle and MD Anderson in Houston also need to be on that list. Medical care ncologist specialzing in prostate is essential.

  • I see that Seattle cooperates with Johns Hopkins in some studies.I wonder if there were some people who moved between the two institutions, and an informal network has come into being. ...

    MD Anderson of course is nationally known.

  • I know if one doc who worked on a high testosterone study at JH who is now at UW.

  • Still be your own advocate and I know you will. As good as Johns Hopkins is...they were not good for lg. We had to seek out other doctors because they gave him a 6 month Eligard injection that kept him in bed for at least 7 months and labs every 6 months. They weren't sure if it was in the bones and they did nothing more to find out. We went elsewhere. This was all before we really understood that we needed ALL of you and more and to research for ourselves. I do not think that anyone should be given a six-month injection when you do not know what the side effects of that injection is.... especially when they have a 1 month and a three-month injection also. Now we know this.

  • yes yes. start low and go slow.

  • At least you got a Doc who will take the time to help select a comfortable coffin...same routine if primary treatment fails....lupron...CRPC....xtandi... when goes to bones add xofigo....rising PSA add chemo....coffin..if your doc is really good will get a good waterproof coffin with a silk lining and memory foam.

    Gus

  • I agree with the others that going to a good cancer hospital is the best way to go. There are many good ones here in California. I am being treated at City of Hope hospital and they are great you will have have a whole cancer team

  • Where do you live

  • western new york

  • I went back and forth with a few MDs that were good but not experts. I finally ended up at Seattle Cancer Alliance, were the MDs are experts.

    I would suggest you try to get to one otter leading centers on the east coast

    Perhaps Sloan Kettering in NYC

    Or Penn State

    The academic centers have the best treatment programs

  • Who are you seeing at SCCA? I'm with Peter Nelson, but I think his clinic hours are only at UWMC.

  • I see a woman Celestia Higano MD.

    She is Mayo train and sent me there for a C11 choline Pet CT that determined a biochemical reoccunce in my lymph nodes. None of my other docs had ever heard of the test. I had 46 lymph nodes removed and went two years without treatment

  • Yes. Maybe memorial sloan kettering. I posted a new video about Maha Hussain and other reaseachers. Later it dawned on me that these are the very people that i have been looking for. They are all completely committed, borderline delusional, to making you better, to getting you well.

  • Let me add my "two sense" about seeking care at a "Specialty Cancer Center". Here is some background: My father lives in Houston, Tx, and since July, I have been down here. Why? That is when my 82 year old father was diagnosed with Stage 4 Metastatic Prostate Cancer at a regional hospital near where he lives. It went from prostate, to lymph, to bone to lung to liver, etc. all in a matter of a year. We know this because his Internal Medicine doctor was watching him and exactly a year before his diagnosis his PSA was at 10, which it had been at for quite a number of years. Add to this that he is positive for the BRCA 2 breast cancer genetic mutation. So that you know, there are very few studies that have been done on men that have prostate cancer and BRCA 2. They know that it increases your chances of male breast cancer, colon cancer, and prostate cancer. That's about it. Anyway, I feel my fathers Internist, having known that my father had the BRCA 2 mutation, and a ongoing "higher" then normal PSA for years, should have referred my father to a Urologist at minimum for a consultation, and possibly an Oncologist, but that did not occur. He is probably somewhat "at fault" for negligence, but with Tort Reform passed in Texas and no Medical Malpractice Attorneys, it would be impossible to "sue" any doctor down here. Anyways, I digress. Fast forward to my fathers initial hospital stay where they diagnosed the cancer. They thought he had two cancers at first, prostate and lymphoma. It turned out it was an unusual spread, but Prostate Cancer broken off, that travelled through his bloodstream to all parts of his body, but FIRST to his lymph nodes near his neck, not the bone. He was at a regional hospital where he was assigned a General Oncologist and a Urologist. While at the hospital, I convinced my father to call MD Anderson Cancer Center and get on their wait list to see a specialist in their GU Clinic, and in the meantime follow up with the Generalist. MDA is ranked 38th in the USA for GU cancers-prostate, bladder, kidney, you get the picture. What I did not know was how this clinic and others like it at MDA operate-The answer is that you are a "medical record number", in a "cancer factory line" and if your cancer is treatable, and you know the right people, you are treated like royalty, if not, you better "watch out" because you will "skew" their "cure rates". This hospital, and others like them place WAY to much emphasis on that, in my opinion.. No compassion for those with Stage 4, in some cases, probably mild disgust with the patient--to them it's about "curing" the cancer, not "managing" it. And some of the doctors and staff will say that. We saw an initial doctor who was so horrible in his attitude (I don't want to be sued so I won't use his name) that we went to the Patient Advocacy department to switch after his first appointment! 2 weeks later, and with allot of stress and aggrevation, my father was "accepted" by another older and kinder doctor. This doctor was more willing to see that my dads other medical issues are also important to consider when treating his cancer. We now see a main "specialty" oncologist at the main clinic of MDA in Houston once every 6 months, and a "generalist" oncologist at the MDA regional outpost closer to my fathers home, that follows "protocols" set by the "specialist". We see the "generalist" about once every month, if not more often due to testing while taking Zytiga. This seems to be working ok so far, with only some minor glitches in communication and personalities, here and there due to staff at both clinics, who by the way are very, very overworked. The compassion issue is not the same as the large regional, non-specialty hospital, my 84 year old mother goes to in Houston for her Stage 2 breast cancer, diagnosed 2 months after my father. They take a "whole" person, compassionate attitude. I have heard of the same sort of issues we have experienced at MDA happening at Sloan-Kettering, Dana Farb, Mayo Clinic, etc. You are a number in a cancer factory. Just understand, that sometimes you need to look at the "hospital system" that has the best philosophy for you. That, my friends, might not always be a "nationally" ranked specialty cancer center, but a local hospital. Ask around, do your homework, and look at the entire situation that you are in. I am not saying that MDA or other specialty hospitals are bad, I am just saying they are not going to display, in many cases, the compassion you need for you or your loved one. Just a suggestion and food for thought...

  • Thanks for posting your experience, and suggestions. You point out that not only people but also systems can be balancing a wide collection of interests, and finding a subset of people and institutions can be as challenging as finding a suitable mate or a career. With the exception that people mostly understand that you can look around and get a second opinion in the medical case.

    I hope that the treatments for your dad and mom go well enough so that they can enjoy their life together. The world is a pretty great place, for many of us anyway. I am sure they like you.

  • I agree, btw, that the BRCA1 mutation and elevated PSA for ten years, and age, is way more than enough of a warning of elevated risk.

  • Martin, I would reach out to the group here---indicate where you live, and ask the Group here who they use and ask them to rate their doctors.

    By the way since I like to drive you crazy---you still have your prostate! And my guess is you plan to keep it unless someone says tomorrow it has to go--or you will die. Probably has to do with the male sex drive.

    Anyway doing some research--I came across information about EDTA and prostate cancer. That it is believed that the high level of the metal ion copper in the prostate with those with cancer, compared to a low number without cancer, creates an opportunity to explore.

    So removal of the copper ions from the prostate improved PSA's numbers nicely. Now how this works, and you might need a script from a Naturopath--is you get EDTA suppositories and stick them up your ass---the EDTA--being an incredibly strong Chelating Chemical, will have the copper ions migrate into the Anal Canal, from the Prostate--reducing the copper in the prostate--which there are claims that PSA's will drop.

    So logically if their are copper ions that do not belong and present with cancer--I would be able to agree to give it a go. EDTA--and I are friends--having used it to clean out calcium Plaque in arteries.

    Nalakrats

  • I will definitely have to check out that chelating shit!

    As to posting on the group farther than I have, I think I will start with the UsToo group in my area, and see what I get back from them. I hate to post stuff that is too derogatory of my local nation center of excellence, since the local economy has pinned so much of it hopes of future prosperity on its wild success.

    They would not remove my prostate at diagnosis because of evidence-based state of the art practice - it didn't seem to help with overall survival. So just another uphill battle, with only "the world is flat" common sense on my side.

    i have considered "sex change" as a treatment. I could make a nice lesbian I feel, although I am not petite. (a joke - humor often runs along the fault lines of a civilization; that is why it is so hard to translate across cultures. This so called joke may be thought to be insensitive and crude at some point in the future, or perhaps to some at the moment. Sorry. No offense intended.)

  • No insensitivities with me I am 73, with my best Presidents being Reagan--and my good friend Trump. Sensitivities are about to be stepped on. Where do you live?

    Nalakrats

  • new york, but i am able to travel pretty much.

  • We have talked before. Not accepting,, I can treat you with Lupron to hold the cancer at bay, I asked my two Radiation Oncologists over 12 1/2 years ago the same question. What would you do if faced with the same situation as me? Stage 4, APCa, just diagnosed. Both said that they would find the best Medical Oncologist available with specialized in Prostate Cancer and not a generalist or Breast Cancer, Lung Cancer, etc. I asked of they knew one. One said no, the other said yes that he sat on a committee with one in Houston at The Medical Center. He set me up with Dr. Amato who was a professor of GU and Cancer at Baylor School of Medicine who was an active researcher. I am set for like and have followed Dr. A from Baylor to the University of Texas Medical School.

    You may not be able to get to Houston, but I would look for my descriptor above. Good luck and keep kicking the bastard, Martin.

    Gourd Dancer

  • My one piece of advice is if you don't trust a doctor, fire him/her. I have fired a few doctors along the way so don't hesitate to change doctors and don't feel guilty about it. You have to feel comfortable and trusting with any doctor who treats you. Where ever you are located there should be good doctors, ask around.

  • Couldn't agree more. Having a doctor you trust helps relieve some of the psychological burden of cancer. Also, at every change in my treatment, I make sure I a) understand what is the expected result and how do we measure it and b) what is Plan B if the treatment fails. I've noticed that most doctors are not comfortable with discussing Plan B ("let's wait and see") until they are certain of the outcome. The harder you have to press them, the more likely it is that they don't have a Plan B. Then it's time to move on and find one that does.

  • Martin: have not lived In NY, for years though born there--I would focus on Sloan Memorial Hospital, as they do have Pca specialists--some of the best. And that is close. Outside, one of my favorites is Dr. Rossi, Emory University Hospital Atlanta, and The Levine Clinic in Charlotte, that focus on Pca as one of their primaries--They work as a team, and many Clinical Trials are run out of Levine---as they are one of Tapur's selected groups. Go to Tapur.Com, maybe it is Tapur.org. Levine will be mine if my Pca, rears its head.

    Nalakrats

  • This is such an interesting question. When I was first diagnosed, that was the thing that kept me up at night. How do you KNOW that the doctor who you are relying on is any good? I woke up one night realizing that I had an acquaintance (only met him briefly) who had studied urology at the University here in Minnesota. Although he doesn't live here any more, i got out of bed and searched for him on Facebook. I sent him a note, briefly outlining my situation, and asking for his advice on who I should see. He was a tremendous help, offered to look at my pathology report and my scans, and then ultimately provided a referral to the head of the Urology department at the U of M. Being in Minnesota, we are lucky to have a wealth of research hospitals and two NCI certified options (U of M and Mayo). I have often wondered what people do who may live in South Dakota or Montana or Wyoming?

    I think the moral of my story is to ask your network. If you don't have a network, find one. Seek out a support group and ask them for recommendations. I totally agree with other comments on here, if you don't trust your doctors you need to find new ones.

  • This comment by Chuck Drake crystallizes what I think the difficulty is that I have with my current Cancer Center. Chuck answers a question, and then reflects on a larger question posed earlier in the day by Dr Tom Beer - "when will we get the clinical trial data?".

    I think my doctors want to go by the book and not move before there is level 1 data available. When I was diagnosed, I was offered a TAK-700 trial, although the Sweeney "CHAARTED" study was complete, they knew about it, but it had not yet been printed in the NEJM. It was printed a week later, and my course of treatment was switched to that.

    So this means that I will get state of the art treatment, but as of a number of years in the past. So state of the art from 2011. Really that is pretty good, but it is not completely satisfactory. A good base, but missing five years of ideas.

  • Lg went to Memorial Sloan-Kettering in New Jersey 5 or 10 minutes away from New York's Memorial Sloan-Kettering about 3 times. We were very pleased with them but they suggested that we go to a more local facility Penn University so we didn't have to travel so far. We have not gone to Penn yet. Memorial Sloan-Kettering said that they treat prostate cancer aggressively.

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