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Medical Forum / Diseases and Disorders / Prostate Cancer / November 2005New diagnosis -- previous discussion was incorrect
Hi folks, I had asked earlier today about my brother in law and colon cancer. I was in error. It's prostate. So now I have new information and I'll ask your indulgence as I am new at this. I just want to help. I'm a tad more savvy as I lost my wife to breast cancer in 1996, and I know my way around the Internet and Usegroups such as this. So here goes. (and forgive me if my info isn't totally correct andis certainly incomplete.) I live in Florida and he lives in New Jersey. I was only able to have a short conversation with my sister. My brother in law's name is Frank. He's 58 years old. Frank had gone for a prostate exam 9 months ago because he had some blood in his urine. The PSA showed 4.6. The doctor (possibly stupidly?) told him to come back in a year. There was a lot going on in Frank's life, so possibly out of "not wanting to know more", he agreed. After waiting 9 months, he decided to go back for another test and this time his PSA was 7.8 Tissues were taken for biopsy, and 4 out of 6 were malignant. I believe his Gleason test was rated at 4, if I'm describing that correctly. In two days, he's going for a bone and CAT scan. The doctor told him it's very serious and wants to treat this aggresively, meaning he wants to do surgery and remove everything that "isn't necessary", as surgery must be done before radiation can be done. A friend of his, who is a doctor (dunno what type) is going with him for the scans on Thursday. Frank also wants to go to Memorial Sloan Kettering or Johns Hopkins for second opinions before surgery. My wife was at Sloan , and I regard it very highly. I also have great respect for the doctors at Saint Barnabas in Livingston, NJ. Naturally, as probably most of you have experienced, no one in the family knows much at all about prostate cancer, but we all need to learn as much as possible as fast as possible. So at this stage, I'm a "friends and family" member of this group. Having read many posts, and receiving fast answers to my previous questions, I respect you guys and thank you in advance for the help and support you provide. Dave > Hi folks, > [quoted text clipped - 49 lines] > > Dave Those of us here can't know the details of any special case, and we are not physicians, so you shouldn't rely on what we say. The usual wisdom is that even aggressive prostate cancer grows relatively slowly, so there is usually time to seek extra opinions from medical specialists. Either Hopkins or Sloan-Kettering are first rate places to find out about prostate cancer. An increase in PSA of that magnitude in 9 months is reason for concern, but it could be the result of something other than prostate cancer. You describe the biopsy results as showing Gleason 4. The Gleason score is usually the sum of two numbers, the most prevalent found in the samples and the second most prevalent. Each number can range from 1 to 5. If the sum is 4, that would indicate a not particularly aggressive cancer, probably one not actually needing treatment at present. But if one of the components is 4, that would be more serious. If that is the case, it would be wise not to put off treatment too long. For comparison sake, my Gleason was 7=3+4, and my doctor would have been willing to put off treatment for a couple of months without concern about the cancer spreading. But my PSA was only 4.5 and it had not increased nearly as much as your brother-in-law's PSA in the year before diagnosis. >You describe the biopsy results as showing Gleason 4. The Gleason score >is usually the sum of two numbers, the most prevalent found in the [quoted text clipped - 8 lines] >increased nearly as much as your brother-in-law's PSA in the year before >diagnosis. Thanks for explaining that, Leonard. I didn't know the two-number system, and I have to assume that my sister and B-I-L didn't either, so they heard the number four and thought that was that. I'll be sure to inform them tomorrow when I call. on 10/25/2005 5:03 PM baldycotton said the following: > Hi folks, > [quoted text clipped - 7 lines] > to breast cancer in 1996, and I know my way around the Internet and > Usegroups such as this. Get thee to http://www.phoenix5.org/ for more information on prostate cancer (PCa) than you'll care to know. This is an excellent resource which will save you hours of surfing for information. > So here goes. (and forgive me if my info isn't totally correct andis > certainly incomplete.) I live in Florida and he lives in New Jersey. [quoted text clipped - 10 lines] > After waiting 9 months, he decided to go back for another test and > this time his PSA was 7.8 This rapid rise (PSA velocity) does not bode well. It could indicate that your BIL has an aggressive variety of PCa. > Tissues were taken for biopsy, and 4 out of 6 were malignant. I > believe his Gleason test was rated at 4, if I'm describing that > correctly. Gleason score is a two parter. Typically reported as Gleason 7 (4+3) or 6 (3+3), etc. Typically the Gleason score post-op is likely higher than pre-op (due to having the entire prostate to examine rather than just the cores.) If it's truly a 4 (2+2) he has a very low grade cancer and his chances are quite good. Still, I suspect that you're correct in suspecting you got the number wrong. With Gleason, low is good, high is bad. With PSA, the higher it is, the worse it is but more important is the rate of rise. > In two days, he's going for a bone and CAT scan. The doctor told him > it's very serious and wants to treat this aggresively, meaning he > wants to do surgery and remove everything that "isn't necessary", as > surgery must be done before radiation can be done. A friend of his, > who is a doctor (dunno what type) is going with him for the scans on > Thursday. Well, maybe yes, maybe no. If you elect to have the surgery, you should always have it before any sort of radiation therapy as the radiation leaves the flesh down there a bit tough to cut. If you're going to have the surgery, you want the surgeon to be able to practice his "carving art" on something soft and amenable to cutting; carving in butter, not carving on a lump of iron ore<g> > Frank also wants to go to Memorial Sloan Kettering or Johns Hopkins > for second opinions before surgery. My wife was at Sloan , and I > regard it very highly. I also have great respect for the doctors at > Saint Barnabas in Livingston, NJ. Outstanding thought. If Hopkins is truly an option, he can try to see Dr. Patrick Walsh or one of his proteges. Walsh is a specialist in PCa and developed the nerve-sparing surgery widely practiced these days. Then too, by now there are quite a few experts at this scattered around the country. Sloan-Kettering is likely to have at least a squad of them on staff and more with privileges. > Naturally, as probably most of you have experienced, no one in the > family knows much at all about prostate cancer, but we all need to > learn as much as possible as fast as possible. Unless he's got a doubling rate on that PSA that's outta sight, slow down, take a deep breath, ALL of you and take the time to study the options as well as the options within the options. Surgery is one option which MAY be available to him. If he chooses surgery, he then gets to address the issue of which doctor, which treatment center, which form of surgery (there are three right now unless I missed something), etc. Same thing goes with radiation. PCa is serious but it's rarely an acute problem, i.e. one that needs to be treated "instantly" like a heart attack or some of the more virulent forms of cancer. > So at this stage, I'm a "friends and family" member of this group. > Having read many posts, and receiving fast answers to my previous > questions, I respect you guys and thank you in advance for the help > and support you provide. That's why we hang around here. We've all (just about) gone through it or are going through it. I received a lot of advice and support when I went through it just about six years ago (DX) and decided on the RRP (surgery) which I had in 03/2000. So far, so good. Just had my 5½ year checkup and, unless the PSA comes back as detectable, I'm still in the clear. As you already know, this is an excellent place to receive answers to many questions. >Get thee to http://www.phoenix5.org/ for more information on prostate >cancer (PCa) than you'll care to know. This is an excellent resource >which will save you hours of surfing for information. Thanks for your lengthy, detailed reply, Unq. And for the web site above, and for the encouragement. My wife is quite shaken, as she is very close to my sister. She's feeling at a loss right now. Dave Dave, There's little I can add to what has already been said. I think your brother-in-law's current doctor is right to take this very seriously and to recommend aggressive treatment. I also think that getting opinions at Sloan- Kettering or Johns Hopkins are excellent ideas since both are world class centers for PCa treatment and research. It is useful, if possible, to get opinions from both a surgeon and a radiation oncologist. Both treatments are used and each has its advantages. Whatever your BIL does, it will be a good idea to get treatment from the most experienced and reputable doctor he can find. There are some urologists who do 5-10 radical prostatectomies a year, and others that do 100 or more - real specialists in the art. Ditto for radiation oncologists. Some do occasional prostate radiations in among other types of cancers, and some specialize in it and have a lot of experience. The highly experienced practitioners are believed to have higher rates of success. Ideally, your BIL should have been referred to a specialist nine months ago. But the odds are good that he has still caught it early enough for successful treatment. Many men here have had similar diagnoses and come through treatment successfully. Best of luck to him. Alan >But the odds are good that he has still >caught it early enough for successful treatment. Many >men here have had similar diagnoses and come through >treatment successfully. That's the kind of thing I need to hear now. Tomorrow when I call, I'll use these contacts from this group to help encourage him. Weeeeeeeeeellllllllllllllll then, welcome to the newsgroup. We invite all victims and supporters of victims of prostate cancer! Frank's Gleason is a combination of two scores, each between 1 and 5. He could be 4+3=7, or 4+4=8, or 3+4=7 (which is different that the first 7). His PSA is not all that high (mine was 16), but you are right in that he probably had the disease last year and maybe should have been biopsied then. At his age and assuming his total Gleason is 7, with his PSA, he has a choice of about every treatment. Surgeons and surgery patients (like me) tend to like surgery. Radiologists and radiological patients tend to like radiology. There is very little by way of difference in whether he will be cured regardless of which of these two he selects. Most surgery people really like the fact that the cancer is out, hopefully forever. Radiology people like the fact that there are few immediate side effects. The last side effects are about the same for both. Frank needs to research. If he has shut down, his loved ones need to research. We will be glad to help along the way.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum > Hi folks, > [quoted text clipped - 49 lines] > > Dave >Frank needs to research. If he has shut down, his loved ones need to >research. Thanks Steve. And you're right, but I'm here because I NEED to be doing something myself as well. It's not in me to sit idely by. Learning and researching is my way of avoiding worry, I guess. Might even be helpful. I don't know yet that he is or will shut down. I suppose that it is probably one of the "stages" one goes through when given a glimpse at mortality. >We will be glad to help along the way. Thank you for that. Dave > So at this stage, I'm a "friends and family" member of this group. > Having read many posts, and receiving fast answers to my previous > questions, I respect you guys and thank you in advance for the help > and support you provide. > > Dave I agree with the others that you should look into all options. As a (fellow) northern New Jersyan, I can't praise the Radiation Oncology department at Morristown Memorial Hospital highly enough. I'm 61 and have just been through 5 weeks of external beam radiation and HDR brachytherapy. If you or your BIL would like to chat with me, e-mail me and we can write or phone each other. -Gordy >I agree with the others that you should look into all options. As a >(fellow) northern New Jersyan, I can't praise the Radiation Oncology [quoted text clipped - 4 lines] >If you or your BIL would like to chat with me, e-mail me and we can >write or phone each other. Thanks so much gordy. I will tell him about you, (and Morristown... he lives in Flemington). I'm grateful for your offer. Dave > I'm 61 and > have just been through 5 weeks of external beam radiation and HDR > brachytherapy. Gordy... who did your HDR? Where? That's the treatment I'm looking into (No, silly, I'm not that flexible, I use a rear-view mirror!) > My brother in law's name is Frank. He's 58 years old. > [quoted text clipped - 4 lines] > who is a doctor (dunno what type) is going with him for the scans on > Thursday. Good idea and have him go with him when he gets the results. The rest of your post may depend what, if anything, they see on scans. J Dave - Lots of good advice already given here, so hope you don't mind me adding my $0.02. It's a good idea for your brother to get a second opinion. I'm in Jersey and went to Sloane. Dr. Peter Scardino is the head of the Urology department - great surgeon - however it may be tough to get to him. Another source at Sloane is Dr. Howard Scher - he's a medical oncologist. I worked with both - Scardino did my surgery. My brother had his surgery done at Morristown Memorial - very good docs there and he was quite pleased with his results. Fortunatley for us, these groups have lots of experience. Since your BIL is not too computer savy, suggest he purchase a copy of Walsh's book - lots of good info on all his options. From the sound of his numbers he can take a few weeks before making a decision. Let him know that PCa and RRP does not necessarily mean the end of the world. I was 47 when I was diagnosed almost 2 years ago and I'm doing well. Good luck, Sandy K. > ... The doctor told him > it's very serious and wants to treat this aggresively, meaning he > wants to do surgery and remove everything that "isn't necessary", as > surgery must be done before radiation can be done. ... I just noticed the wording of this and thought it should be clarified. Treatment can consist of surgery alone, radiation alone, or surgery plus radiation. However if surgery and radiation are both used, the surgery must be done first because radiation damages tissue in such a way that subsequent surgery is difficult and dangerous. If both treatments are used, the surgery is performed first. The patient then waits some time for the sutures and cuts to heal. Then one of two things happens - either radiation is performed, or the patient waits to see if the PSA rises. If the PSA does not rise, then no radiation is believed to be needed and it's not done. That second method (waiting for PSA to rise before performing radiation after surgery) seems to be the most common approach, but apparently some doctors opt for the double treatment without waiting for a PSA rise if they think the cancer is very aggressive. The choice between surgery and radiation as a primary treatment is a contentious one with advocates on each side. One argument often given for surgery is that if it fails, radiation can still be tried - though one radiation oncologist I spoke to said if the surgery failed and subsequent radiation worked, then the radiation would probably have worked without the surgery. It's all very difficult and there is no scientific consensus about the optimum treatment. Alan >It's all very difficult and there is no scientific consensus >about the optimum treatment. Thanks, Alan. I'm aware of the various opinions. Radiatation Surgery Chemo Specialists and can be expected to recommend their specialty. I suppose the opinions as to coarse of action will be made when the results of the scans are reviewed. >>It's all very difficult and there is no scientific consensus >>about the optimum treatment. [quoted text clipped - 9 lines] > I suppose the opinions as to coarse of action will be made when the > results of the scans are reviewed. Actually, you are missing one important one - intermittent hormonal blockade followed by high testosterone plus 5AR2 inhibitors. Check out: http://www.prostateweb.com Ed Friedman > I'm aware of the various opinions. ... Chemo Chemotherapy is not one of the options. For prostate cancer, it is used only in the final stages as a short-term palliative - it does not any hope of a cure. SignaturePeter Headland Quoting someone not identified: >> I'm aware of the various opinions. ... Chemo He responded: > Chemotherapy is not one of the options. For prostate cancer, it is used > only in the final stages as a short-term palliative - it does not any > hope of a cure. I discussed this some time ago with my med onc, pointing out the short-term efficacy of chemotherapy. She -- correctly -- reminded me that the short-term feature is based upon early trials that had as the cohort under study men who were, as she put it, on their last legs anyway. IOW, far advanced with no hope. She said that a man who is otherwise in relatively good health and not so desperately far gone would have a much better outcome than those in the study. Peter is quite correct, though, that it is not a cure. Nothing (so far) is a cure once the PCa has become systemic, as I know to my sorrow. Regards, Steve J "Never -- never -- never give up! Never go gently. There will be plenty of gentle after we die, so until then -- fight -- control the rhythms and tempo of the dance, even when you have to let the PCa dancing bear lead for awhile -- even when you have to wear the lead suit as you dance -- never let the bear set the rhythm and tempo of your dance with life -- when the bear finally takes control, it will be a very hollow feeling for him, because I will be gone -- dancing in a better place." --E. B. (Burns) Mixon, PCa survivor, June 14, 2005 on The Prostate Problems Mailing List Thank you, Burns. Live long and prosper. Peter, Standard care chemo-therapy is pretty much as you write. However, armed with a lot of new bullets in the arsenal, my research medical oncologist has the opposite view with new trial that show great promise. My money is on him and his 24 years of experience in research; or at least it is my only hope. He has said that he can buy me ten years at a minimum and hopefully that ten years will see cure. His approach for me is curative and not pallative. Mike >> I'm aware of the various opinions. ... Chemo > > Chemotherapy is not one of the options. For prostate cancer, it is used > only in the final stages as a short-term palliative - it does not any > hope of a cure. > my research medical oncologist . . . said he can buy me ten years at a > minimum I find that very, very, very, VERY hard to believe. If it were anywhere near true, we'd have heard more about that than we heard about Scott Peterson, Terry Schiavo, and Michael Jackson . . . combined. Oops. Now THAT's hyperbole! But you get my point. I.P. > Peter, > [quoted text clipped - 8 lines] > Mike > ... Mike, Have you entered a clinical trial? Which one? Alan Alan, I finished one in January. Lasted six months and took PSA down to 0.3 and cleared up the two hot spots. It involved 4 chemos - Adriamyacin, Taxotere, Erustimine, and Ketoconazole; paired and alternated plus 30 mg of Hydrocortisone a day. Next is a chemo taken for 15 mins every three weeks for a year. Had a number until this past summer - called Xyotax. Works different than attacking dividing cells. This one takes advantage of blood vessels. Apparently cancer creates vessels that are porous as opposed to normal that are not. The drug seeks out porous vessels and kills whatever is there. Next in his bag of tricks is one with a number. I do not remember; something like A110483. He also has another Phase II Trial involving genetics that I am eligible for in December. Since my Medical Oncologist has only done research for 24 years, I am sticking with him instead of standard fair and giving the Phase II stuff a workout. Danny McCarty uses the same guy. Take Care, Mike >> Peter, >> [quoted text clipped - 15 lines] > > Alan > Alan, I finished one in January. Lasted six months and took PSA down to 0.3 and cleared > up the two hot spots. It involved 4 chemos - Adriamyacin, Taxotere, Erustimine, and [quoted text clipped - 20 lines] > > Mike Wow. It sounds like you and your doctor are fighting really hard against the SOB, and really knocking him down. That's a great inspiration to those of us who might think PCa means we should hang it up and let it take us. Best of luck with it and keep us posted. Alan > I suppose the opinions as to coarse of action will be made when the > results of the scans are reviewed. That may be. There are some treatments that are ill-advised based on certain criteria. E.G. If one is in his 40s, radiation is usually not a good idea. If one is in his 80s, surgery is not usually a good idea. If the PCa has grown into the lymph system, some surgeons will recommend radiation. However, based on the numbers you've given, he's probably going to have all the options on his plate. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum "Alan Meyer" > That second method (waiting for > PSA to rise before performing radiation after surgery) seems > to be the most common approach, but apparently some > doctors opt for the double treatment without waiting for > a PSA rise if they think the cancer is very aggressive. Mine advised adjuvant treatment right after I healed from my RP just because my PC was a Gleason 8, even though my margins were negative and only one SV was only slightly involved. He implied this is common, at least with an aggressive cancer. His adjuvant treatment of choice in my case was ADT, in the hopes it would nail any micromets anywhere, but it was still with unmeasurable PSA. He is now suggesting that I consider RT as first choice if my PSA warrants adjuvant treatment. OTOH, he and the entire university oncology board he is part of have backed off a little bit on recommending early (pre-PSA) adjuvant treatment, ADT or RP, because of their SEs. I think my defense against it to them had some effect on their slight paradigm shift. I.P. > "Alan Meyer" >> That second method (waiting for [quoted text clipped - 16 lines] > > I.P. These decisions seem to me so much a matter of personal choice. You I.P., have been very concerned with quality of life and not getting side effects from unneeded treatments. Some others seem to lean the other way, wanting the most aggressive possible treatment in hopes of a higher chance for a cure. This same controversy was very big among breast cancer patients. Some opted for lumpectomy and others for radical mastectomy. It seems to me that doctors need to advise their patients on what they think is best, but also listen to them and recognize that not everyone is the same. Alan "Alan Meyer" > > It seems to me that doctors need to advise their patients on what > they think is best, but also listen to them and recognize that not > everyone is the same. That's exactly what some docs seem to be increasingly aware of. They used to assume that everyone wanted max heartbeat, QOL be damned. But now that studies show otherwise, some docs are starting to pay more attention. I.P. |
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