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Medical Forum / Diseases and Disorders / Prostate Cancer / July 2006Waiting is terrible
Hello everyone! I would like to join in and see if we can get any additional info while we wait for the PSA test after my husband's RP. That test is 8/11. A bit about my dh's pc history... He is 48 year-old white, NO family history of any kind of cancer, never smoked, no real rhyme nor reason to have it really. 11/05 - signs: blood in semen and lump in testicle Go to family dr. immediately, psa is 14.9, and she says it looks like it could be PC, starts him on antibiotics just in case it is only an infection until he can get into urologic oncologist because of the holidays. 12/05 - urologic oncologist says: "you're young & healthy, it's just an infection!" Stay on antibiotics. I must note that my husband looks really young for his age also, and I believe that played a part in all the Dr.'s view of him/his treatment. 1/05 - still saying it is an infection ... stay on antibiotics, psa is at 12.9 now. 2/05 - psa still at 12.9 ... dr. says "it's an infection still, he expects the psa to drop to 0 - stay on antibiotics" 3/06 - psa is 10.5 now and dr. says stay on antibiotics .... 4/06 - still on antibiotics, and this is when I "insist" on a biopsy. It makes the Dr. mad but he does it. Sure enough - cancer is present, perineural invasion, gleason 7 (4+3), etc. He recommends RP because he is sure it is contained in the prostate - he doesn't feel any nodules; bone scan & CT scan he says are clear. We then go to another Dr. - he recommends RP (again we hear "you are young & healthy"), he too is sure it is confined to prostate. Then we find a surgeon to do the robotic RP... he says yes he is a good candidate because he's "young & healthy" and he too is sure it is confined to the prostate. Surgery was 7/05 - I ask the Dr. in the hospital after surgery if it was 'confined' ... yes! whew! 7/11 - Dr. appt. to get the catheter out. He can urinate by himself - yay! :) Then the Dr. comes in to tell us the bad news ... pathology report is back. SVI (direct extension) and vas deferens present (surgically removed) and 2 positive margins on the bladder side. He did not touch the lymph nodes because he said they looked normal, but micrometases can be present, but if it is, there is no sense in testing them. We ask what the likelihood is that it is already in the blood ... he gives 50/50 chance. So, while we wait for the next psa test, we wonder and worry. We have 2 little girls and are in search of something else we can be doing. We feel helpless and feel we are at the mercy of the Dr.'s who have told us "he's young & healthy" -- They have been treating his PC as standard and typical, and it is proven to be NOT standard and typical. If anything, thank you for listening! It's been therapeutic to get all of this out. Catherine The urologic oncologist is a jerk at best and incompetent at worst. He should have done the biopsy right after the 1/06 PSA. It looks like there was roughly an unnecessary four month delay in treatment since it takes about six weeks for the effects of the biopsy to heal before surgery is performed. All the comments about "it is confined" and "young and healthy" are standard and you shouldn't berate these docs for that. They all say these things to ease the patient and usually they are correct. But, nobody really knows what to expect until they get in there, remove the prostate and get a good look at it. If it's any help to you, prostate cancer is pretty slow growing so the four month delay probably didn't make any difference considering the bad path report although deep down we all know treatment at any time is always better a day earlier than a day later. What's important now is to get that next couple of PSA tests. The first one may still show some residual PSA in the blood if taken too soon after surgery so don't panic if it's not "undetectable". Hopefully, it and subsequent tests will be <0.1. Have the doctors suggested any additional treatment such as adjuvant radiation or hormone therapy? If nothing else, get a few more opinions from other doctors and facilities and you and spouse take charge of your husband's treatment as you did when you insisted on the biopsy. You will have a whole slew of decisions to make regarding future treatment, if any, and you want to be on top of everything, at least with an "amateur expert" rating which is higher than most doctors and even a few urologists. Lots of people on this newsgroup have been through what you are going through now so don't hesitate to ask and ask some more. All the best in fighting this thing. Dave Perry > Hello everyone! I would like to join in and see if we can get any > additional info while we wait for the PSA test after my husband's RP. [quoted text clipped - 68 lines] > > Catherine Catherine, Dave's advice, below, is perfect. I would just emphasize the need for you and your husband to bring in top-tier experts. Use the time he is recuperating to read every good book on prostate cancer you can find (Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, and Dr. Stephen Strum's Primer on Prostate Cancer are good starting points) and responsible website, then look through the archives of this newsgroup. Find a "center of excellence" in prostate cancer in your part of the country, and talk to several doctors until you find one (or a team) that you feel you can trust. As Dave said, the four months probably didn't make a whole lot of difference, but your husband is lucky you demanded the biopsy. His doctor is an a.s. Alex > The urologic oncologist is a jerk at best and incompetent at worst. He > should have done the biopsy right after the 1/06 PSA. It looks like [quoted text clipped - 98 lines] >> >> Catherine Thank you Steve and Alex also -- your responses came up as I was being long-winded in my response. I've read and researched so much that you would think "I" had a prostate myself ;) I agree that the 50/50 is being optimistic. The surgeon did not even give us all the info at our meeting from the pathology report. I had the pathology report faxed to me and have deciphered it ... that's why I now know the 50/50 is being optimistic. Where do we go to find the top-tier experts? The first ur. oncol. was supposed to be the best (not!), and we really like the surgeon who did the rp, and realize we probably need a more specialized oncologist now, right? How do we go about finding the best? I did speak to a person from the American Cancer Society today and she will hopefully be able to guide us/help us get the right one. Thanks again ... all of you! I have been reading the archives here and I am glad I found this group! Catherine > Catherine, > [quoted text clipped - 115 lines] > >> > >> Catherine > I agree that the 50/50 is being optimistic. Just remember my other important points in my other post... A cure is on the way. It is just a matter of time. And, all of us seem to be living longer and longer WITH PCa than we used to. > Where do we go to find the top-tier experts? The first ur. oncol. was > supposed to be the best (not!), and we really like the surgeon who did > the rp, and realize we probably need a more specialized oncologist now, > right? How do we go about finding the best? I'll leave that to others to opine, but they will need a location. From whence to you hail? > I did speak to a person from the American Cancer Society today and she > will hopefully be able to guide us/help us get the right one. I dont' know that they hold a lot of respect here. But, it's a start, I guess. Thank you, Dave. I agree that earlier rather than a day later would have been better, but we are trying to focus on the future rather than the delay caused by that jerk :) The Dr.'s plan of attack is this: - 8/11 - first psa post-rp - If it is .1 or higher, then another one in 2 weeks (in case of false-positive) - If that is .1 or higher, then ProstaScint test - If anything shows only in the prostate region, then EBR - If he "lights up like a Christmas tree" (the Dr.'s words), then he will go straight to HT I understand the 'young & healthy' comments are standard, but when you hear it from 4 Dr.'s and they have all been wrong, I can't help but think they have looked at his 'youth & physical shape' as a way to predetermine without truly looking at all the signs pointing to the outcome. Just because he is young and in shape does not mean he CANNOT have prostate cancer. kwim? I have read Steve Kramer's sig line ... it seems very similar to my dh's and the probable path we will take. The waiting is just the hardest part... we have been doing nothing but waiting it seems ... Has anyone here had SVI (type II) with vas deferens and 2 positive margins (bladder/base side) and remained with an undetected psa? I can't seem to find anyone ... A girl has to have hope, right! ;) The good news (for anyone wanting to know about the robotics surgery) ... he's recovering amazingly well and quickly! He has even had 'tingling' and nocturnal stretching last week. It is expensive, but worth it in so many ways for him to have retained continence and function (or so it seems :). Thanks again, and I look forward to participating here ~ it seems as y'all are straight shooters (pun intended ;) and that's exactly what we need now. Catherine > Thank you, Dave. I agree that earlier rather than a day later would > have been better, but we are trying to focus on the future rather than > the delay caused by that jerk :) It's not so much jerkiness as it is incompetence. Any internist or urologist needs to know about prostate cancer at the most fundamental leveal and that means PSA + DRE = probable cause to go on to a biopsy. My father caught PCa when he was 40. You're find very, very few that young with PCa, but he was misdiagnosed for 2 years, sealing his fate. We had a very good doctor and be did not have PSAs in 1972, so he is somewhat vindicated. But, not yours. > The Dr.'s plan of attack is this: > [quoted text clipped - 5 lines] > - If he "lights up like a Christmas tree" (the Dr.'s words), then he > will go straight to HT I believe your doctor will pursue EBRT regardless, if he doesn't light up like a Christmas Tree. There are very possibly killer amounts of PCa still on or around the prostate bed. You need quite a bit of them to make the prostascint scan light up. I merely had a an SVI result and my doc was leaning towards EBRT. I'm fairly confident based on initial biopsies that it will not light up like a Christmas Tree. And, if it does not, EBRT has a small chance of actually curing him. > I understand the 'young & healthy' comments are standard, but when you > hear it from 4 Dr.'s and they have all been wrong, I can't help but > think they have looked at his 'youth & physical shape' as a way to > predetermine without truly looking at all the signs pointing to the > outcome. Just because he is young and in shape does not mean he CANNOT > have prostate cancer. kwim? Young and healthy is a factual assessment. For this disease, young is anything under 55. Very young is anything under 50. Healthy? Well, is he? If you define health as the absence of any disease, maybe not. But, if you're a surgeon interested in whether a patient can tolerate a major insult to the body, then he is probaby young and healthy. > I have read Steve Kramer's sig line ... it seems very similar to my > dh's and the probable path we will take. Sounds like it. And, it is really the only path open to you (though you should get that from a doctor and your own research). You husband and I are far too young to consider EBRT or HT as an initial treatment, unless we are not healthy enough to tolerate surgery. And, like I said before, my not going straight to EBRT merely extended the wait. Otherwise, I hope that you do not follow me step for step. Having to go beyond EBRT to HT is a real bitch. > Has anyone here had SVI (type II) with vas deferens and 2 positive > margins (bladder/base side) and remained with an undetected psa? I > can't seem to find anyone ... A girl has to have hope, right! ;) Yes. I wish I could tell you who it was. However, I can tell you that six years later, I'm still alive. I work every day, usually 9 hours a day. I'm maxxed out on vacation time and sick time, cuz I just don't take off a lot. I did leave early from work today (because I had to use vacation) and walked 4-5 miles at a local park. Since I've been on this newsgroup, I've heard from 83 people who joined the PCa club before me. They vary tremendously in PSAs, SVIs, positive margins, metastic cancer, etc. As far as I know, 81 are still waking up in the morning and looking out and seeing God's green Earth. Probably more didn't make it and I just didn't hear of their demise, but most are occasional posters. > The good news (for anyone wanting to know about the robotics surgery) > ... he's recovering amazingly well and quickly! He has even had > 'tingling' and nocturnal stretching last week. Woo hoo!!!!!!!! > Young and healthy is a factual assessment. For this disease, young is > anything under 55. Very young is anything under 50. Healthy? Well, is he? > If you define health as the absence of any disease, maybe not. But, if > you're a surgeon interested in whether a patient can tolerate a major insult > to the body, then he is probaby young and healthy. Y & H also has a significant subjective component, even to objective doctors. I first met my ultimate cancer surgeons over the phone when they independently called me long distance for our first consultations. One of their early questions, especially when I broached the idea of a dual prostate/colon surgery, was how old I was relative to my 61 chronological years. IOW, was I a young, average, or old 61? They accepted my thorough assessment -- pending personal, face-to-face evaluation -- and proceeded with appropriate advice, rough plans, and tentative scheduling. At our first meeting, both reassured me that my chronological age was of virtually zero consequence, that my "physiological age" was far more important and, in my case, reassuring. (They added that they had VERY seldom performed either surgery on a more youthful patient, which was comforting to all of us and another vote for the importance of individual patient evaluation.) I.P. > He is 48 year-old white, > [quoted text clipped - 3 lines] > infection until he can get into urologic oncologist because of the > holidays. He should have had a biopsy in December 2005. However, it's possible that his cancer did not grow all that much in the interim. Prostate Cancer is a very slow cancer. Being young can be a double-edged sword. Prostate Cancer grows fastest in us youngsters. Healthy is relative. Your doc will recommend radiation, probably, in six months. In the mean time, you'll want to read and research all you can. The bottom line is, 50/50 is probably optimistic. But, he has many years left ahead of him and, for the first time in history, he has a real shot at living long enough for a cure.  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, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum On July 24, Catherine wrote: > Hello everyone! Hi and welcome to the club no one wants to join. (snip) > A bit about my dh's pc history... > [quoted text clipped - 3 lines] > 11/05 - signs: blood in semen and lump in testicle > I've never heard of a "lump in testicle" being a sign of prostate cancer (PCa), though I suppose anything is possible. I've had such a "lump" for >20 years. It's a hydrocele and entirely innocuous unless it causes discomfort. If the "lump" were on the left side and felt like "a bag of worms" it would likely be a varicocele. Same story. Regarding it being a sign of testicular cancer, I'll defer to others with more expertise. > Go to family dr. immediately, psa is 14.9, and she says it looks like > it could be PC, starts him on antibiotics just in case it is only an > infection until he can get into urologic oncologist because of the > holidays. > (1) a course of antibiotic is standard treatment (tx) to check for infection, but the PSA is, according to my readings, too high to be solely or even mostly the result of an infection. The medic should have referred the dh (what's his name??) immediately to a uro who is experienced in tx of PCa. (2) I've heard the phrase "urologic oncologist" and cannot fathom what it means. A urologist is a surgeon, and some of them do a lot of PCa tx. An oncologist is a specialist in tx of cancer. Is there a hybrid? I suppose that, if a medic studied hard and became board certified in both oncology AND urology, (s)he could with reason be considered a "urologic oncologist." If the medic has not done so, then I have to think that use of the label is at best misrepresentation. I've also seen the term,"naturopathic oncologist" which is ludicrous. > 12/05 - urologic oncologist says: "you're young & healthy, it's just > an infection!" Stay on antibiotics. I must note that my husband looks [quoted text clipped - 9 lines] > 3/06 - psa is 10.5 now and dr. says stay on antibiotics .... > This is absolutely absurd -- as well as possibly-tragic malpractice. > 4/06 - still on antibiotics, and this is when I "insist" on a biopsy. > It makes the Dr. mad but he does it. [quoted text clipped - 4 lines] > clear. > A bone scan and CT with a Gleason score of 7 is, according to a leading medical oncologist/PCa specialist (see below) a waste of time and money. It is "cookbook medicine," a phrase I learned from a medic. > We then go to another Dr. - he recommends RP (again we hear "you are > young & healthy"), he too is sure it is confined to prostate. [quoted text clipped - 6 lines] > was 'confined' ... yes! whew! > Maybe, maybe not. A Gleason 7 is borderline. *What was the pathologic Gleason?* Then get it confirmed by a specialist pathologic lab. This is *vital.* > 7/11 - Dr. appt. to get the catheter out. He can urinate by himself - > yay! :) Then the Dr. comes in to tell us the bad news ... pathology [quoted text clipped - 10 lines] > gives 50/50 chance. > This is a travesty. I was going to write above that there is NO WAY the uro could be certain that the PCa was confined to the gland at that stage. But he did sell the surgery, didn't he? (sarcasm) > So, while we wait for the next psa test, we wonder and worry. We have > 2 little girls and are in search of something else we can be doing. We [quoted text clipped - 4 lines] > proven to be NOT standard and typical. > And the uro has made money. I'm sorry to present such a burden, but I must. We each do what we have to do in order to survive. The lives of Catherine and her (anonymous) husband have been forever changed. The optimum result of the war into which they have been drafted is entirely up to them. If they empower themselves, all the better. (1) Explore the authoritative website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html Answers to many questions are to be found there. (2) Buy and study the premier PCa textbook _A Primer on Prostate Cancer_ subtitled "The Empowered Patient's Guide" 2nd edition, by medical oncologist and prostate cancer specialist Stephen B. Strum, MD, and Donna Pogliano, PCa warrior. (3) Demand every scrap of paper regarding test and surgery notes from every medic. Start and maintain a file of such information. It will prove to be invaluable. (4) Run, do not walk, to a medical oncologist, preferably one who is well-experienced in tx of PCa. (S)he can be the base, the coach, of the tx team. I realize that this is a lot of work. What choice is there? Accept the word of medics who have proven themselves to be incapable at best, deceptive at worst? Take charge, give orders, be demanding! If a medic does not meet expectations, FIRE HIM. I've done it and I'm better off for it. 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. No need to be sorry, Steve. We realize now what has happened, but we are not doctors and we have been to FOUR different ones for opinions, so we felt as though we were on the right track. We did discuss the fact that all four couldn't be wrong, correct? Hind sight though ... another story :( Hopefully, someone can learn from our story. We hate to be the example, but if that's what it takes... > referred the dh (what's his name??) The dh is Tom :) > I've never heard of a "lump in testicle" being a sign of prostate cancer > (PCa), though I suppose anything is possible. I've had such a "lump" for > >20 years. It's a hydrocele and entirely innocuous unless it causes > discomfort. If the "lump" were on the left side and felt like "a bag of > worms" it would likely be a varicocele. Same story. Regarding it being a > sign of testicular cancer, I'll defer to others with more expertise. They did an ultrasound on the lump ... it is hydrocele. But that 'lump' came up at the same time as the blood in the semen. Those 2 things together were what alerted Tom that something was wrong and got him to the PCP. > (2) I've heard the phrase "urologic oncologist" and cannot fathom what > it means. A urologist is a surgeon, and some of them do a lot of PCa tx. [quoted text clipped - 3 lines] > oncologist." If the medic has not done so, then I have to think that use > of the label is at best misrepresentation. The guy's card says "urologic oncology" > Maybe, maybe not. A Gleason 7 is borderline. *What was the pathologic > Gleason?* Then get it confirmed by a specialist pathologic lab. This is > *vital.* The needle biopsy pathology was 7 (4+3) and also the organ pathology was 7 (4+3) > This is a travesty. I was going to write above that there is NO WAY the > uro could be certain that the PCa was confined to the gland at that > stage. But he did sell the surgery, didn't he? (sarcasm) Yes, he did sell the surgery... but we bought it because it was the 4th dr. to tell us the same thing. I now know that perineural invasion was a good indicator it had spread combined with the gleason score and the psa levels ... but what is a commoner to do? > (1) Explore the authoritative website of the Prostate Cancer Research > Institute at: [quoted text clipped - 20 lines] > Take charge, give orders, be demanding! If a medic does not meet > expectations, FIRE HIM. I've done it and I'm better off for it. Thank you, thank you, thank you! I/we will do all of the above -- great advice! Catherine > Steve wrote >> This is a travesty. I was going to write above that there is NO WAY the >> uro could be certain that the PCa was confined to the gland at that >> stage. > > Yes, he did sell the surgery... but we bought it because it was the 4th > dr. to tell us the same thing. Many highly trained fingers probed my prostate prior to surgery, and only one thought my SV may be involved. She was the only one proved right. I.P. > No need to be sorry, Steve. We realize now what has happened, but we > are not doctors and we have been to FOUR different ones for opinions, [quoted text clipped - 76 lines] > > Catherine Most everything has been said. Good folks here and everybody's in your corner. Avoid the depression and the "bad news syndrome" you and your husband's futures are anything but deterministic. I'd be talking to that radiation oncologist NOW. The difference between a Urologist and an Oncologist has been discussed. They are different and have different focuses. I'd bet that EBRT is an absolute and, because it must be focused it is an "as soon as possible" scenario to minimze the chance of spread beyond the prostate bed and bladder. Unfortunately more SE's are possible but there are lots of EBRT options so get to your research. Just my opinion. I'll be rooting for you in my prayers. On July 24, catherine responded to me, in pertinent part: (snip) > Hopefully, someone can learn from our story. We hate to be the > example, but if that's what it takes... > The story is not new, unfortunately. We PCa pts and our loved ones must be prepared to educate and empower ourselves. Our medics almost certainly will not. >> referred the dh (what's his name??) >> > The dh is Tom :) > Hi Tom! >> (2) I've heard the phrase "urologic oncologist" and cannot fathom what >> it means. A urologist is a surgeon, and some of them do a lot of PCa tx. [quoted text clipped - 7 lines] > The guy's card says "urologic oncology" > Uh huh. Misrepresentation, maybe? I can print cards that say I'm an astronaut. Doesn't mean I am one, unfortunately. > Maybe, maybe not. A Gleason 7 is borderline. *What was the pathologic > Gleason?* Then get it confirmed by a specialist pathologic lab. This is [quoted text clipped - 4 lines] > was 7 (4+3) > Here's the real point of this message: I was referring to labs that are expert in evaluation of prostate specimens. They are: Bostwick Laboratories [800] 214-6628 Jon Epstein (Hopkins) [410] 955-5043 or 410-955-2162 (Dr. Epstein does not do ploidy analysis) David Grignon (Michigan) 313-745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 Dianon Laboratories 1 [800] 328-2666 (select 5 for client services) UroCor, Inc. 1 [800] 411-1839 Accurate and reliable evaluation of the specimens is absolutely essential, as further tx depends utterly upon this. The cost is ~$300, and is almost certainly covered by insurance and Medicare. Even if it were not, IMO the price of certainty is cheap. FWIW, the specimens from my second biopsy were evaluated by Bostwick, which reported certain findings that were not mentioned in the local hospital's lab report. A diagnosis (dx) of PCa is not necessarily a death sentence. There is much that can be done to preserve and extend life, perhaps to cure. Regards, Steve J "The most bothersome aspect of what goes on in the world of PC today is that few (less than 5%) of physicians (mostly urologists) bother to spend the 10-15 minutes to use the literature published in urologic journals and oncology journals to calculate the individual's risk for OCD (organ confined disease) vs non-organ confined disease. This is like going to sea on the open ocean and not checking out your ship or the weather but just 'doing it.' Physicians are not behaving as scientists and moreover, they are not translating what we know into what is done with the patient. Unfortunately, we appear to be living in a time when physician income is more important than patient outcome. Please realize that I am very positive about what can be done in the world of PC. We have wonderful tools in our toolbox, but we 'ain't using them.'" --Stephen B. Strum, MD on p2p, June 12, 2004 > I've heard the phrase "urologic oncologist" and cannot fathom what > it means. A urologist is a surgeon, and some of them do a lot of PCa tx. > An oncologist is a specialist in tx of cancer. Is there a hybrid? I > suppose that, if a medic studied hard and became board certified in both > oncology AND urology, (s)he could with reason be considered a "urologic > oncologist." I consulted with several uro oncs, and a gen surg onc removed half my colon. They're all just what you surmise they are. I.P. Catherine, There is so much to say and several of the guys have already said some of it. You need to see a oncologist maybe a radiation oncologist. Where do you live? I'm not a doctor, in fact my medical knowledge would fit in a thimble but I can tell you my husband has PC so I've been down that same route except he was 55 when we found out it was cancer. Some form of external beam radiation is not unusual since it appears that the cancer has spread beyond the prostate according to the path report. What you will not know for a probably a long time is if it has spread beyond that. So the most you can do is go through with the radiation and cross your fingers that they managed to nail every last cancer cell. Several of the guys out here were young when diagnosed with PC. Many have dodged the bullet and several others are fighting it hoping that there is light at the end of the tunnel. It seems that it is almost always aggressive in younger men. That does not mean you give up and throw in the towel. The EBRT may be all that your husband will ever have to face to get rid of his cancer. And maybe, just maybe they managed to get it all with the surgery and the EBRT is only going to be icing on the cake. Waiting is the worst and I think just about everyone out here can tell you that. Even those who have been given an all clear by their docs still find the wait for their results from the PSA to be difficult even after years and years of perfect results. Concentrate on the positive things. Provide quality family time, take a vacation before the kids go back to school even if it is with a pup tent in a local state park. Don't be afraid to talk to the kids about what is happening with their dad. Even the very littlest of children seem to understand when something is wrong. You didn't say what their ages are but I'm sure you will find the words to tell them if you haven't already. Children sense when things are not right and they tend to respond accordingly. Be open with them and let them know you are worried about their daddy. I'm here if you want me. Just email me your phone number and I'll call you. My long distance is a flat rate. I can call anywhere in the USA or Canada at any time of the day without charges. I've shed my fair share of tears over the PC. ((HUGS)) Bev > Hello everyone! I would like to join in and see if we can get any > additional info while we wait for the PSA test after my husband's RP. [quoted text clipped - 68 lines] > > Catherine Catherine, My husband is 49, his PSA averaged 24 before RP. He had a bladder neck invasion and a positive lymph node. After much thought/study/etc we were going to hit it with everything including chemotherapy and ADT. He could not do the chemo but he has been on ADT since April and has had a great response. This means he may get off it by next summer. He also had RT. The big danger *as we see it* is that people do one failed treatment after another. I just call it strength training for cancer. We think the thing to do is hit it hard, with everything you can. Get it killed. Even though there were positive margins it is not hopeless. Its just not likely you can go, "good, that's cured, lets get on to other subjects." You might find this abstract about the value of RP even with systemic cancer (far worse than your husband's). http://p4.forumforfree.com/radical-prostatectomy-for-clinical-t4-prostate-cancer -vt632-prostateaction.html So it may be a good thing, that it was debulked. Kind of harsh living with the after-effects, huh? Also, my husband'd post-op PSA at 4 1/2 weeks was 1. Its possible it would have gone lower. He started ADT right away though, which took it to undetectable within a week or so. I understand you are waiting for the PSA test but I suspect the PSA test will be fine. You got almost all the cancer with the RP. The question is what is left, and when it will show up. If ever. His immune system may do a perfectly good job of sweeping out all the remaining cancer cells. Its really late and I'm exhausted tonight, but feel free to write personally if you like. I have some full studies (about RT, ADT, etc) that I will send you if you like. regards, laurel Hello Catherine, I'm sorry to read about your husband's condition. I can't add much to what other's have said, but I'll say a few things. The treatment you got from the four doctors turned out to be wrong, but the advice the gave was not as off the wall as it may sound with hindsight. The great majority of men with PCa are older than your husband and the odds were that the doctors would be right. It just happened that your husband fell into the small end of the statistical curve. I don't say that to justify them so much as to indicate that perhaps they weren't as dumb as they might appear after the fact. Common medical wisdom didn't turn out to be right in this case. Going forward, I think others are right that radiation is a good possibility, but more tests and a visit to a good radiation oncologist are required to find out. You might inquire about the new PET scans for metastatic cancer. They may give more assurance that the cancer is not yet metastatic if they come back negative, and that radiation might kill what's left of it. I also want to emphasize what Steve K and Bev and others said about not despairing. Even if primary treatment fails there are years ahead before symptoms could appear and there are hormone therapy and possibly chemotherapy treatments that can delay that still longer - sometimes a good many years longer for people who respond well to them. There are also a number of new medical treatments in trials now that have shown great promise - from cancer vaccines (treatment vaccines, not prevention vaccines) to new chemotherapies that attack newly understood parts of the cancer cell lifecycle, to new delivery techniques that carry cancer killing drugs directly to the tumor and leave most other tissues alone. Right now, you're doing all the right things - educating yourselves, getting multiple medical opinions, discussing the case with people that have been there. I hope that, in the midst of all that, you'll also be able to enjoy some great times together - with friends, family, books, music, travel, whatever you've always enjoyed. Life hasn't ended yet. All of us who have faced our own mortality - and everyone on this newsgroup has, needs to remember that life is still about living. Best of luck to you and your family. Alan They could have at least done a FreePSA in conjunction with the PSA. It has been a very long day, but a good one. I have read all you have been saying and have been calling for referrals and making appts. for Tom to see oncologists all over town (Atlanta) today. I wanted to chime in though and thank you ALL for being so helpful, straight forward, and optimistic all at the same time!! Tom has some appointments with oncologists next week and I hope to find someone who is willing to be more aggressive with his treatments and/or care. We have one on 7/31, 8/7, and 8/9 (Dr. shopping I guess you could call it) -- in addition to the 8/11 appt. with the surgeon. I'm not going to let anything slip by this time :) I will write more later to address some of the questions you've asked, but I've got to get the girls to bed ... they are 8 and 9 years old and they start back to school on Tuesday (woohoo! :) I just wanted to thank you and let you know that I/we really do appreciate all the info and support you've so freely given!! Oh, I will be making a list of questions for these oncologists ... can you add anything to these? 1. test lymph nodes? 2. EBR? with undetected psa even? 3. PET scan? 4. MRI (he has never had one ... should he for the soft tissue?) Catherine > They could have at least done a FreePSA in conjunction with the PSA. Sorry to hear your troubles. As others have said, apart from the unreasonable initial delay before the biopsy (which likely made no difference), the advice and treatment your husband received was perfectly sensible; you were just unlucky that the cancer was more widespread than the doctors could tell. The statistics I have seen say that you still have plenty of chance for a full cure* at best and many more years of good quality of life for your husband at worst. Don't forget people are working flat out for a true cure, so just hang in there no matter what. I am thinking positive thoughts for low and declining PSA tests - don't make a liar of me now! * - "full cure" = die at an advanced age of something unconnected with the cancer. SignaturePeter Headland
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