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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005Elevated PSA first time after RP and a big WHAMMO
Clear Day5 MAY 05 Dear Members, I've mostly lurked since I was diagnosed with PC last November. Mine was a T1C, Gleason of 4+4=8 and a PSA of 4.0, up from 1.5 within a year. Surgery on 14 December 04 was nerve sparing and the Urologist was very happy with the result and confident that the PC was confined to the inside of the prostate. The pathology report confirmed this and post op pathology dropped the Gleason to 3+4=7. I've been keeping up with the newsgroup and note that Pop and another fellow have continued elevated post operative PSA when they seem to have been led to believe the surgery was curative. My first test, samples taken 28 April, also came back Monday 09 May at a continuing elevated level of 1.5. This really stunned me. My urologist looked concerned and mumbled something about maybe having left some tissue behind. Big help. I'm to have another PSA test in three months, then every three months thereafter. But, this doesn't help my blood pressure one bit and three months is a long time. Looks like I'd better reread the stuff about doubling time and velocity it that's even relevent now. Can anyone suggest something I can go back to my urologist with to proactively push him to do something??? The WHAMMO came on the Friday preceding my appointment with the urologist. I was diagnosed with a 3.5 cm diameter adenocarcinoma originating in either from the top of the stomach or the oesophagus. They can't say for certain. I'm sure my blood pressure jumped 30 points on each side. The tumour was discovered during a gastroscopy biopsy ordered because it was painful to swallow hard food. I had a CT scan as a follow up and NOTHING showed up which must mean that if it didn't pick up the 3.5cm tumour, what else didn't it pick up? The CT tech was kind enough, at my request, to do a full torso scan to see if there was anything down around the prostate site that might be of interest. Nothing showed there either which I'm really beginning to believe means that CT scanning is a lousy imaging method for cancer patients. Since being told of this new tumour I've been doing a lot of online research and most of it is not promising by any type of therapy chosen. I seems there is an average 7 month onset time for new metastasis in 85% of patients who initially present with symptoms, regardless of treatment. Two years survival is on the good luck side so it doesn't look like I'll make into the era of the new cancer cures supposedly coming down the tube. I won't have grade and staging data which is a bit more involved than PC (( T (primary tumour), N (regional Lymph Nodes), M (distant metastasis) and G (histologic)) till after surgery on 24 May which will remove about 1/3 of the stomach and quite a bit of the oesophagus. The surgeon anticipates the surgery will be curative (heard that gumbo before) and expects a 10+ day hospital stay. The surgery itself is fraught with risks mostly from various infections. No idea what condition I'll be in after hospital. And, the damn thing is I just got the old motorcycle cleaned up, insured and on the road not two days before all this crap came along Right now I'm just not sure what my priorities should be. At 58, is it time to stop fighting this demon? I was looking forward to at least another 10 years just one week ago; now, two looks about as good as it gets. I won't even be able to start collecting my Canada Pension Plan. Anyway this is mainly a rant on my part, the first one ever for me, and it's also to update this group. Sorry for the crappy disposition. Any pointers to places I might have missed regarding stomach/oesophagus cancer will be appreciated, particularly if the information is more optimistic than the clinical and statistical studies I've been reading all week. This is just about enough to make a guy recommence drinking and smoking cigarettes and other miscellany. Thanks and Regards, Dan Coyle > Right now I'm just not sure what my priorities should be. At 58, is it >time to stop fighting this demon? I was looking forward to at least another >10 years just one week ago; now, two looks about as good as it gets. I >won't even be able to start collecting my Canada Pension Plan. Anyway this >is mainly a rant on my part, the first one ever for me, and it's also to >update this group. Sorry for the crappy disposition. Hi, Dan. I have to start out by saying your "crappy disposition" is understood by this old man. I don't know what to say about the Whammo, but your pCa can be successfully treated. FWIW, I have a friend who was in the same boat you now are in and he's still going strong after 10 years. I'm sure others on the forum have similar experiences. So, the elevated (first time too) psa does not mean you are going to die in two years. Just curious, but what type of work did/do you do? Any time you want to rant, btw, please go ahead. Lots of folks here who will understand. You're in my thoughts. Dave Dan, I don't blame you for bitching. Mother Nature is kicking you in the teeth for no reason. I don't know anything about your new form of cancer, but I'm looking at what the American Cancer Society says http://www.cancer.org/docroot/cri/content/cri_2_2_4x_treatment_for_esophagus_can cer_12.asp?sitearea=cri and I don't see how you can estimate your longevity until you know the stage. For example, the five-year survival rate for Stage 0 is 75%. The surgeon must think your stage is low or he would just sent you to the radiologists, right? jimhoney > Clear Day5 MAY 05 > [quoted text clipped - 66 lines] > > Dan Coyle "James A Honeychuck" <jimhoney@worldnet.att.net> wrote > > Mother Nature is kicking you in the teeth. Let me get this straight: your teeth are WHERE? ;-) I.P. ROTFL!!!!!!!!!!!!! > "James A Honeychuck" <jimhoney@worldnet.att.net> wrote > > > Mother Nature is kicking you in the teeth. > > Let me get this straight: your teeth are WHERE? ;-) > > I.P. On May 15, dan wrote, in pertinent part: > I've been keeping up with the newsgroup and note that Pop and another > fellow have continued elevated post operative PSA when they seem to [quoted text clipped - 10 lines] > Can anyone suggest something I can go back to my urologist with to > proactively push him to do something??? It seems to me to be possible that there are PCa cells elsewhere, perhaps in the seminal vesicles and/or lymph nodes. Or maybe not. The only way to find out is to test. I am especially concerned about the lengthy period between PSA tests. I believe that, in the circumstances, monthly "ultra-sensitive" tests would be informative and prudent. What tests did the uro order prior to surgery? PAP, CGA, free PSA, other? Or did he proceed with tx without really knowing what he was dealing with, as so often happens? It may be time to move beyond the uro to a cancer specialist, an oncologist. I strongly recommend a medical (not radiation at this stage) oncologist for consultation. And dan should get *all* of his medical records together for the onc, as well as for dan's own file. He has a *right* to this information, and in a timely manner, too. I saw a post on P2P by someone else in Canada (BC) who has waited *four months* for records, keeps being put off, and *still* has not received them. It's outrageous. Lastly, I recommend the website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html where there is a wealth of authoritative information, written by well-respected medics. > The WHAMMO came on the Friday preceding my appointment with the > urologist. I was diagnosed with a 3.5 cm diameter adenocarcinoma [quoted text clipped - 9 lines] > believe means that CT scanning is a lousy imaging method for cancer > patients. Actually, Dr. Strum suggests that it's pretty much useless and a waste of time and money where the Gleason is low. I disremember on which side of the line a Gleason 7 is. > Since being told of this new tumour I've been doing a lot of online > research and most of it is not promising by any type of therapy chosen. [quoted text clipped - 12 lines] > I just got the old motorcycle cleaned up, insured and on the road not > two days before all this crap came along Dan's Easy Rider days are, I hope, far from over. But what he has outlined above seems to reinforce the recommendation for a consultation with an oncologist. (snip) Regards, Steve J "Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.'' --Sir Winston L. S. Churchill Sounds like you just jumped into my boat, even though you weren't "lucky" enough to find your GI cancer in time to do a dual surgery as I did. I'm guessing your upper GI surgery and SEs will be rougher than my "right hemicolectomy" (removal of some small intestine and half my colon), but our similarities include a) very limited statistics compared to the Partin tables, b) pretty poor prognosis (maybe 0.5 odds of two-year survival) painted by the limited statistics that do exist, and c) a 3.5 cm GI tumor. Since I was able, by sheer luck, to catch both of mine in time to remove both cancers at once, at least my CC simply reinforced my decision to do an RP or my PC. But your RP is a sunk cost, history, non-undoable, etc, so your GI surgery is a whole new ball game independent of the PC, especially with your PC being T1c even though it was an 7. My T3c G8 N0M0 PC's worse than yours, but your GI cancer MAY be worse than mine (a small bowel carcinoid tumor @ 3.6 cm plus three node mets is deep doodoo). I'm three years older, but very athletic, so we may be similar in apparent age, so my thoughts may be of use to you. Here they are, off the cuff, in no particular order. Both our GI cancers kill MUCH faster than PC, so the PC is not a big deal until we dodge the GI cancer. We aren't going to dodge the GI cancer without removing it. My colon surgeon/oncologist says if my CC doesn't return within two years, its threat diminishes after that, and the PC returns to the forefront. I'd guess your statistics may be similar. Overall, we're both looking at several-year survival percentages down in the teens at best. If we skate past the GI cancer threat peak, we can expel a big sigh of relief because now our bigger threat is the PC and our odds improve because we "only" have PC. But you can't survive the GI cancer without more surgery, can you? I couldn't, with my GI cancer. So which threat strikes you as the lesser evil: 1. Very high odds of dying a particularly lousy death within two years, or 2. Another surgery recovery, a chance of infections, with much longer survival odds, and NO CATHETER? Yes, CT doesn't do that well on many cancers. I was "fortunate" that mine was big enough to show up . . . and big enough to raise my met and return odds significantly. I've done all I'm willing to do for mine (post-op ADT just doesn't add enough benefit to justify its threats for me), and am getting on with my life at full tilt and no perceived worries. My PSA and 5-HIAA (my GI cancer marker) will rise when they rise, and I'll re-evaluate my odds and options at that point. Until then, I'm much more concerned about the wind forecasts (for my sailing) than about my frigging cancers. I'd have a hard time accepting dying of a GI cancer I hadn't tried to remove. OTOH, I'd be PO'd if I spent my last year or two fighting a never-ending round of GI infections. Are the infection odds high? You don't have a no-brainer solution that I can see. What might your next year or two look like if you choose a) no more surgery vs b) surgery? Is there any rational picture that your and your doctor can paint, or would that be pure folly because there are so many unknowns? Or do you have other GI cancer options, such as rad or chemo, with lower SE risks? I.P. > Clear Day5 MAY 05 > [quoted text clipped - 80 lines] > > Dan Coyle > The WHAMMO came on the Friday preceding my appointment with the > urologist. I was diagnosed with a 3.5 cm diameter adenocarcinoma [quoted text clipped - 26 lines] > > Right now I'm just not sure what my priorities should be. They won't know until they get in there to sample lymph nodes and do the surgery and pathology. 1) surgery /recovery/ adjusting to learning to "new gastro system" and eating right 2) possibly radiation therapy 3) if anyone suggests anything else, come see us on alt.support.cancer Are you in Canada? If so, BC is the best at cancer and exceptional at surgery. They wouldn't be doing it unless a) they want to avert a blockage and/or certainty of you surviving the surgery and a good chance at a cure.. Steph's a radiation oncologist (in BC) on alt.support.cancer After the surgery and you get the exact staging info, come see us. Good luck ! J Dan, I can speak only from the PCa aspect, so far. RP nine years ago... a round of Lupron and Casodex anti-androgen "therapy" three years ago, after PSA had risen from almost 0 to about 4. It dropped back to almost 0, but has been rising again and holding steady at around 9. CT and bone scans and x-rays are negative. Based on many consultations I've had at "top-rated" hospitals in the US, the consensus is... as long as the PSA isn't doubling within a year, and stays below 20, do nothing, and monitor PSA with testing every six-weeks. With that in mind... As IP has stated, it looks like your PCa can take lower priority at this point. No need to apologize for "venting." You've been hit with a "whammo," and did nothing to deserve it. I think most of us are pissed... especially those of us who've done "all the right things" with nutrition, excercise, smoking, etc., and still got hit. It helps to know we're not alone. Ken, your case is of interest to me as I am recurring and so far have been reluctant to jump into salvage treatment. I assume from your comments that you did not have RT - what was the thinking behind that? Bill Denton RP 2/12/02 PSA .45 Memphis > Ken, your case is of interest to me as I am recurring and so far have > been reluctant to jump into salvage treatment. I assume from your > comments that you did not have RT - what was the thinking behind that? Bill... Probably, I would have opted for RT when the PSA was about 4, about five years after surgery. Initially, my doc figured it was in the prostate bed, but after all the scans came up negative, he recommended Lupron and Casodex, since there wasn't a target for radiation. By the way... I thought I'd mention this: Last year, after my PSA had risen to 9.9, I started 200mg of Celebrex. Two months later, my PSA had dropped to 6.3, and a month after that, it was down to 5.3. Celebrex was the only medication I was taking... along with vitamins, antioxidant supplements and green tea. For no apparent reason, a couple months later, it started climbing again. At 9.2, my doc recommended that in light of possible problems with Celebrex, its value to me wasn't worth the risk, expecially since it seemed to be not working anymore. Now, with recent studies showing a benefit from combining Lipitor (Vytorin for me) with low-dose celecoxib (Celebrex), I started that a few days ago. My next PSA test is in about a month. Ken, presumably a conscious decision was made in your case not to start salvage treatment until your PSA was way up in the whole digits - and that is contrary to everything I've read on the subject. What factors led you take that course? Do you regret it? Bill Denton RP 2/12/02 PSA .45 Memphis > Ken, presumably a conscious decision was made in your case not to start > salvage treatment until your PSA was way up in the whole digits - and > that is contrary to everything I've read on the subject. What factors > led you take that course? Do you regret it? I don't regret not having salvage radiation, because it wasn't offered in early 1996, in L.A. Surgery, and to a lesser extent radiology, has changed rapidly since then. Laporoscopic, cryogenic, robotic, etc., were experimental, or even theoretical, in '96. I was amazed that John Kerry was on his feet a few days after his surgery. As we're reading today, it could be a common out-patient procedure, soon. PCa surgery is rapidly advancing, but everything else seems to have stalled. As with everything related to PCa, there are dozens of logical, rational reasons, written by dozens of logical, rational experts, for and against just about everything. I don't doubt that at least a few of those experts get PCa too, and are faced with the same "educated guesses" as we. I bet their survival rate is about the same as ours. Ken Schuster > Dan, > [quoted text clipped - 12 lines] > With that in mind... As IP has stated, it looks like your PCa can take > lower priority at this point. Ken, This agrees with my feelings on recurring PCa. I have picked 15 as the PSA level at which I will start back on the Lupron/Casodex. I was actually surprised when my May 5 PSA test came in at only 14.1. Of course, the urologist thinks I am crazy for not jumping on treatment a long time ago, but he had never experienced the side effects of hormone therapy. Dale P Denver Have I lost contact? I thought you were at .1 when you quit. Did you rise 14 in a year?  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 PSA .07 .05 .06 .05 non Illegitimi carborundum > > Dan, > > [quoted text clipped - 23 lines] > Dale P > Denver Steve, Probably a different Dale. There are several of us who post here, but I have been more of a lurker the last four or five years. My PSA started rising in early 2002. It has taken three years to reach 14.1, which is a little surprising to me. It has taken MUCH more time than I thought it would take. Dale P Denver > Have I lost contact? I thought you were at .1 when you quit. Did you rise > 14 in a year? Dear Members, Thanks for your comments and suggestions. I spent a few hours at sci.med.diseases.cancer yesterday and found a little info there that wasn't confined to clinical or statistical studies. Stephen, your questions about what tests were done prior to my RP are interesting. I recall only the PSA and free PSA as part of a routine yearly check up. I don't know how easy it is to make an appointment with an oncologist here without a referral from another MD and I don't know how easy it will be to get all my records. Important stuff from my first bout with cancer and subsequent radiation treatment is about twenty years ago and located in Alberta. But I will ask my GP whom I'm seeing tomorrow. I'm going to have the surgery, for sure. I'm also seeing a lawyer this week to update my will. It's encouraging to hear that BC is good at cancer treatment. My present impression must be coloured by my situation and continued elevated PSA. I'll revisit the question of more frequent PSA screens and a consult with an oncologist after the partial gastrectomy is done and its status is measurable. James, you're right regarding stage. I'm using, for now, the assumptions of size and presentation with existing symptoms. Not to start grousing again but they really won't know until they open me up so I can't really make any educated decisions until all the stage info is at hand. I'm, frankly, afraid of the worst case scenario where they cut, look around and then close right back up because of the tumour state. I.P., I am digesting all of what you've said. I suspect the difference between us is that you are in much better physical condition than I am. In wanting to keep my remarks as uncomplicated as possible, I have not stated that I've been essentially flat on my back for the past two years. My doctor just recently determined that I'm clinically depressed. I would not have known having had no prior experience with the condition. I've been taking anti-depressants for about 7 weeks now and they seem to have kicked in; proved, I suppose, by the fact I was able to spend two days detailing my bike and getting it on the road. I appreciate your approach founded in information and logic and the amount of info you have at hand. J. I will make a point of going to alt.support.cancer when I'm out of the hospital. Thank you again, Curtis for your email. And, to all who are interested, I live in Victoria, British Columbia (North Saanich to be more precise). Thanks and regards, Dan Coyle Dan, I can't think of anything useful to say about cancer that hasn't already been said, but I'll add my "Best of luck" to you. I hope you get a chance to ride that bike through the beautiful woods and hills of British Columbia. Alan > I'm going to have the surgery, for sure. I'm also seeing a lawyer this week > to update my will. [quoted text clipped - 17 lines] > And, to all who are interested, I live in Victoria, British Columbia (North > Saanich to be more precise). Dan, Good for you for taking an anti-depressant. We often suggest that people initiate a walking program before surgery. This helps lung function and lessens chances of surgical complications and pneumonia. I hope you will do so, starting immediately, if you haven't started already. I usually say a month to six weeks, but anything is better than nothing. Start slow, take deep breaths and increase the length of time that you walk, as you are able, keeping in mind the way back. The deep breathing and walking, is very important and retrraining your diaphragm to work harder, especially since you've been "flat on your back" for so long. In hospital, ask to be referred to a radiation oncologist. You can discuss both issues with same. You're right where you need to be to get the very best information and care. :-) Best wishes for good news and a speedy recovery, J > Thanks for your comments and suggestions. I spent a few hours at > sci.med.diseases.cancer yesterday and found a little info there that wasn't > confined to clinical or statistical studies. Hello Dan, You may wish to print this up and take it with you to discuss with the surgeon. It was posted to sci.med.diseases.cancer this morning. The bottom part of it is about how more lymph nodes should be removed in surgery for stomach cancer. Perhaps the surgeon knows about this US controversy and it's never been an issue in Canada. I'd want to discuss the issue and the pros and cons of how many they remove. I think they only decide once they're inside and get a good look see. (but I'm not sure) By then, you're sleeping and not part of the decision. Have confidence. I''ve seen many positive reports, on various newsgroups, about surgeons in Canada http://topics.nytimes.com/2005/05/16/health/16cancer.html Apparently there's several types of partial gastrectomies. <http://www.cancerhelp.org.uk/help/default.asp?page=3917> They also discuss the lymph node issue there and here <http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Gastrointestinal/02.Sto mach/Management/start.htm> I would want to know if the tests they do first iindicate which lymph nodes are affected, if any and if not, whether the lymph nodes are sent to pathology while you're still in surgery and they use that as part of the decision-making process. I won't lie to you; it does happen that they do open patients up and decide nothing can be done; I think they put a stent (bypass) in so the patient can continue to eat without obstruction, but it sounds like your situation sounds very positive that they've caught it much earlier. Since the gallbladder seems so close, I was thinking they mall also remove that if there are "silent stones" in it. We've also had patients have their spleens removed. I think that relates to the lymph system and may not be necessary in your situation. If you're overweight, the surgery will help that and you may be eating liquid diet for some time until you heal. If you're underweight, stock up now, eat and enjoy ! Hopefully these will give you fodder for an interesting discussion pre-op with the surgeon. Get your list of questions ready ahead of time, ok? Best, J > I don't know how easy it is to make an appointment with an > oncologist here without a referral from another MD and I don't know how > easy > it will be to get all my records. My admission ticket to see oncologists was my PSA and biopsy. They got me in quickly. > I.P., I am digesting all of what you've said. Not all at once, I hope. It's likely to give you diarrhea or constipation, plus maybe a baaaad stomach ache. > My doctor just recently determined that I'm clinically depressed. THAT is a huge bummer, worse than most cancers in the short term. It has so many causes, a common one after 45 being naturally declining testosterone . . . which is what many PC patients NEED. Make sure you get a physician willing to fight that depression hard, thoroughly, and with a broad spectrum approach. It takes some patients and doctors many tries to determine which meds work. Sometimes a meaningful project like that bike can make a huge difference. I.P. Dan Coyle, I'm very sorry to hear of your problems. You will be in my prayers. When I started on the PCa adventure, I had just turned 50 and had lost 15 lbs and was founf to have an iron deficiency anemia. That usually means a GI malignancy. Fortunately, nothing along those lines showed up and I"only" had prostate cancer. I did a lot of preparation back then. GI malignancy often moves faster than PCa. Do your homework, and make your move. The GI problem is the more urgent problem. Steve U Dammit, Dan! And, if I remember correctly, you also went through testicular cancer 18 years before your prostate cancer. How can I encourage a man with three cancers in 20 years? But, let's step back and take a look. 1. Your testicular cancer is but a memory. Unlike prostate cancer, you can be relatively certain of a cure after five years remission. 2. Your stomach cancer, according to your doc, is likely curable. I don't see any reason to doubt that at this time. So take your best shot. 3. You are in your very early stages of continuous prostate cancer control. Notice I did not say cure. You have 1.5 PSA and holding. It's too small for a CAT scan to find. One of the reasons you selected RP, no doubt, is that you could treat it with radiation if the surgery failed. You still can. And, later, if that doesn't work, you can go at it with hormone therapy. You probably still have 10 years. Your probably will live to 2015. 2015 is still predicted for an end to cancer. Non illegitimi carborundum!!! 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > Clear Day5 MAY 05 > [quoted text clipped - 66 lines] > > Dan Coyle |
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