Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Aside from some very good advice, brings up a VERY good observation here which has to do about clearly understanding the communication between the patient and the urologist. In your note, you mentioned, " We were told that there is no chemo for prostate cancer. " If in this statement you meant that there is no chemo 'cure' for prostate cancer ... your urologist is correct ... The truth is, that the word cure is thrown around so flippantly among various treatment options yet the truth is cure means one thing to a patient and another to a physcian ... so don't get caught up in that mind game ... HOWEVER if your urologist meant literally there is no chemo treatment at all for prostate cancer ... well ... he/she is mistaken as pointed out ... She is absolutely right on ..there are some very new and promising drugs which extend life ... the site she recommended is an EXCELLENT source .. So The moral of the story .. keep asking questions ... The role you find yourself in, that of the caregiver, is an on going learning process and at times can seem overwhelming .. NOT TO WORRY - there are a lot of great people who are caregivers who have walked this path before you ... this road is unfamiliar to you ... but not to the thousands and thousands of us who are up the road ahead ... Randall Mesler, PhD Author: “Prostate Cancer A Caregivers Guide” http://prostate101.tripod.com/ Sent by Medscape Mail: Free Portable E-mail for Professionals on the Move http://www.medscape.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 It was Dale and my understanding that the urologist said that down the road when the cancer figures out how to grow without testosterone, that there would be radiology options but that there was no chemotherapy options. Of course we are still new to this-- diagnosis was in Feb. We will see the oncologist for the first time in a week and we have lots of questions! We have hope of new treatments, and Dale is only 47 so we have hope for many years together. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston Churchill__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Good point Randall and I hope I've added it to it by a very recent post a few minutes ago ... but I'm curious as to why a urologist is handling this and not an oncologist. That would surely make for an even better understanding?? I'm sure that the vast majority of those " thousands and thousands of us who are up the road ahead " have a very large %age of oncologists on the case! Thankfully so. Ian Re: RE: chemo question Aside from some very good advice, brings up a VERY good observation here which has to do about clearly understanding the communication between the patient and the urologist. In your note, you mentioned, " We were told that there is no chemo for prostate cancer. " If in this statement you meant that there is no chemo 'cure' for prostate cancer ... your urologist is correct ... The truth is, that the word cure is thrown around so flippantly among various treatment options yet the truth is cure means one thing to a patient and another to a physcian ... so don't get caught up in that mind game ... HOWEVER if your urologist meant literally there is no chemo treatment at all for prostate cancer ... well ... he/she is mistaken as pointed out ... She is absolutely right on ..there are some very new and promising drugs which extend life ... the site she recommended is an EXCELLENT source .. So The moral of the story .. keep asking questions ... The role you find yourself in, that of the caregiver, is an on going learning process and at times can seem overwhelming .. NOT TO WORRY - there are a lot of great people who are caregivers who have walked this path before you ... this road is unfamiliar to you ... but not to the thousands and thousands of us who are up the road ahead ... Randall Mesler, PhD Author: “Prostate Cancer A Caregivers Guide” http://prostate101.tripod.com/ Sent by Medscape Mail: Free Portable E-mail for Professionals on the Move http://www.medscape.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Re: RE: chemo question It was Dale and my understanding that the urologist said that down the road when the cancer figures out how to grow without testosterone, that there would be radiology options but that there was no chemotherapy options. Of course we are still new to this-- diagnosis was in Feb. We will see the oncologist for the first time in a week and we have lots of questions! We have hope of new treatments, and Dale is only 47 so we have hope for many years together. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston Churchill __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Juel and Dale -- You need to enlist an expert medical oncologist of the calibre of Dr. Snuffy Myers, Dr. Mark Scholz or Dr. Strum to direct treatment for this young prostate cancer patient. Your urologist seems uninformed of the many options open to patients with advanced prostate cancer. Chemotherapy is an option, usually after androgen deprivation therapy fails. But Dr. Mark Scholz who practices in Marina del Rey, California, is using an aggressive approach, using chemotherapy while the body is strong and the cancer is weak in the hope that this will improve outcomes for patients. Chemotherapy need not be a last resort. You need to be proactive to obtain quality care. You need to be educated and empowered to obtain state of the art medicine. But before you can demand it, you need to know what it looks like. Dr. Strum, my Primer co-author, has written some chapters in the Life Extension Foundation protocol book on chemotherapy that you might want to look into. Since those chapters were written, we have approval from the FDA for Taxotere based chemotherapy treatments. So you have many options open to you even with advanced disease. Don't limit your options based on the recommendations of a urologist who is not well-educated in the options that medical oncologists who specialize in prostate cancer are well versed in. Donna Pogliano Co-author of "A Primer on Prostate Cancer, The Empowered Patient's Guide" Re: RE: chemo question It was Dale and my understanding that the urologist said that down the road when the cancer figures out how to grow without testosterone, that there would be radiology options but that there was no chemotherapy options. Of course we are still new to this-- diagnosis was in Feb. We will see the oncologist for the first time in a week and we have lots of questions! We have hope of new treatments, and Dale is only 47 so we have hope for many years together. Peace on the journey,Juel captwildchild@...************************************If you are going through hell, keep going. --Winston Churchill __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Juel, What an incredible journey ... My heart is deeply touched by your story .. and unfortunately you are experiencing the pitfalls of the medical establishment where you have to demand a referral ... Might I also Suggest that your husbands case be presented in front of a tumor board? You probably know what a Tumor Board is already ... I unfortunately was dumbfounded in those first few weeks, as a caregiver, trying to learn all this new terminology ... However, just in case you are not familiar with this group ... here is a brief description .. Tumor Boards are comprised of a multi-disciplinary group of attending physicians, fellows, residents, physician assistants, nurses, medical students, and other health care professionals. The purpose of this group is to assist in diagnosing and managing your individual case. During their meeting, his physician will provide a history of the present illness, physical & laboratory findings, and radiology and pathology reports. A discussion will begin amongst the Board members, regarding management options, prognosis, outcome, and pertinent references. Metastases can mean that invasive cancer can grow through the lymphatic system, through the bloodstream, or by spreading through body spaces such as the bronchi or abdominal cavity, or through implantation. These involve various avenues and require often times various medical specialists familiar with these sections and with oncology. In essence, your case will receive a multidisciplinary approach to the assessment and management of your cancer. You will get the advice from the best minds in your area regarding your case. It really can put a mind at ease knowing that so many professionals have discussed your case and agree upon the best combination of treatments. Randall Mesler, PhD Author: “Prostate Cancer A Caregivers Guide” http://prostate101.tripod.com/ Sent by Medscape Mail: Free Portable E-mail for Professionals on the Move http://www.medscape.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Juel, If you are like me, I was overwhelmed with friends and neighbors offering their physicians name and qualifying this person as an EXPERT in this field! WOW!! Talk about pressure! This news got me into a frantic mode of thinking that we too had to find the best EXPERT to treat Tim’s cancer as well... But how do you identify this person? Each friend who gave me a name also had a different prostate situation and a different way of treating it. One friend had hormone therapy in conjunction with surgery … Another friend simply opted for radiation …And still another had a physician who always recommended chemo … AUUUGH!~!!!!! …. This was all too confusing .... The truth is that in many cases, expertise is quite narrowly focused and is not something you should pay special attention to. Dr. , for example, is a skilled and renowned physcian, noted for his high rate of successful radical prostatectomies, and he is also the head of the Department of Urology at the local university. Dr. Chang is also considered an excellent physcian who is also an oncologist with a special interest in prostate cancer. So, whom do you pick if you had both choices available to you and they worked at the same hospital? As you can see, selecting a physician is not as simple as finding someone with credentials … AND … it is MUCH more complicated than just going to the yellow pages. A Real World Approach 1.Ask help from your current physician. As a clinician I can tell you …Doctors know who are good and who are not ... They know those who have special training to meet your specific case. Do not be embarrassed about asking for his help. Most good physicians know that this question will come up and are usually glad to give a referral because it is “good medicine”. HOWEVER: with this said … choose a doctor who does not have a close relationship with your referring physician. Doctors who practice together are likely to think similarly, and might tend to defer to the opinions of their colleagues. I recommend finding a doctor who practices at a different hospital. A research hospital or major cancer center is usually a good place to get a second opinion since they should be up on the latest in treatment and diagnosis. 2. Go to the Internet and research the medical literature to see who's published papers relating to your particular problem. Often, this will be quite effective. The physician we selected not only had a good reputation in our city, but also published in the journals and had listed on her resume a keen interest in understanding prostate cancer! 3. Contact a local medical society, or medical schools in your area for the names of doctors who specialize in treating prostate cancer. I especially recommend finding someone who is educated both as an urologist and an oncologist. This way you have someone who not only understands the mechanisms associated the prostate and the surrounding connections, but you will find someone who is knowledgeable about cancer as well. 4. If Medicare covers you, you can call Medicare's toll-free number, to find out how to locate a specialist near you. Or call can call your local Social Security Office (listed in your telephone directory under Health and Human Services). If you're eligible for Medicaid, you can call your local welfare office. Randall Mesler, PhD Author: “Prostate Cancer A Caregivers Guide” http://prostate101.tripod.com/ Sent by Medscape Mail: Free Portable E-mail for Professionals on the Move http://www.medscape.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 I agree Ian, I suggested a Tumor Board might also serve as a guiding factor here .. Randall Mesler, PhD Author: “Prostate Cancer A Caregivers Guide” http://prostate101.tripod.com/ Sent by Medscape Mail: Free Portable E-mail for Professionals on the Move http://www.medscape.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 --- Ian Liston wrote: > Good point Randall and I hope I've added it to it by a very recent post a > few minutes ago ... but I'm curious as to why a urologist is handling this > and not an oncologist. That would surely make for an even better > understanding?? > I'm sure that the vast majority of those " thousands and thousands of us who > are up the road ahead " have a very large %age of oncologists on the case! > Thankfully so. > Ian> Hi, I'm new here. My husband was dx'd in early '97 (Gleason 9, which would be downgraded to a 7 with a notation of some grade 5 cells), had his prostate removed end of May and by October of that year was doing radiation - all under the care a of urologist. For the next year it was a wait and see how high the PSA could go - a very taxing time for us. We ended up in a support group and by the end of '98, we were hooked up with an oncologist at a major cancer institute (can I name it??) who put hubby in a clinical trial (Taxatere, Estramustin, and Carboplatin). We felt MUCH relief to be in the hands of someone who dealt with advanced cancer on a regular basis. It has been 8 years since his diagnosis. He is currently doing well, but needs medication as the chemo didn't work for more than a year. . Quote Link to comment Share on other sites More sharing options...
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