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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006First Post
I have to say this is one of those newsgroups I hoped never to post in but here goes anyway. I came back from holiday a week ago to be told the news that my brother (47) has a PSA of 243 and a biopsy has confirmed he has prostate cancer. He waited 3 months for an appointment with a specialist when, as far as I can tell, UK Government guidelines say no-one should wait for more than 2 weeks when prostate cancer is suspected. That may be because the GP, a locum, told my brother he didn't have cancer although how on earth he thought he could tell that I have no idea. The specialist apparently said he believes those 3 months would have made no difference but they wouldn't have known that at the time. The specialist believes it is at T3 or T4 stage and I went with my brother for a bone scan last week. We're going to see the specialist tomorrow who will be able to tell us the results. I'm sitting here unhappily devouring just about anything I can read about this disease both on this group and other web sources. What I'd like to do is purchase a book (well two, one for him and one for me) which will help explain what is happening, what will happen and what, if anything, we can do about it. There appears to be a bewildering array of such books so if someone here could recommend a book I'll be very grateful. Kevin Kevin: Good books are: Guide to Surviving Prostate Cancer - Dr. Patrick Walsh The Prostate - Dr Peter Scardino Prostate Cancer for Dummies - Dr Paul H Lange What Your Doctor May Not Tell You About Prostate Cancer - Dr Glenn J Bubley A Primer on Prostate Cancer - The Empowered Patient's Guide - Dr Stephen Strum Those books I feel are a good place to start. B.A. Hi Kevin. Sorry to hear about your brother. The books... (You can get them on Amazon) Books by Patrick Walsh, Scardino, Strum...and the 'Prostate Cancer for Dummies' book are all good. Get them...and best wishes, Ron B. Chicago I read about 10 PC books, and every one earned its cover price by covering yet another area the others glossed over. Some, even just a year or three after their pub date, were found in used or closeout book stores or websites for a few bucks. I also read PC chapters in big oncology and/or more general medical books. Every book provided unique decision fodder. I didn't read every PC book cover to cover, concentrating more on the pertinent chapters as my needs/circumstances evolved. Haven't studied RT in depth yet, for example, but may need to some day. I.P. > ... > I came back from holiday a week ago to be told the news that my brother > (47) has a PSA of 243 and a biopsy has confirmed he has prostate > cancer. > ... Don't forget to get your own PSA tested! Do it regularly. There are apparently some hereditary susceptibilities to prostate cancer. > He waited 3 months for an appointment with a specialist when, as far as > I can tell, UK Government guidelines say no-one should wait for more [quoted text clipped - 3 lines] > apparently said he believes those 3 months would have made no > difference but they wouldn't have known that at the time. While the GP seems to know nothing about prostate cancer, I suspect that the specialist was right in saying that, 3 months ago, it was already too late for primary treatment. > The specialist believes it is at T3 or T4 stage and I went with my > brother for a bone scan last week. We're going to see the specialist > tomorrow who will be able to tell us the results. I've never heard of anyone with a PSA that high that didn't have metastatic cancer. So the bone scan is just a formality as far as that is concerned. Even if, for some amazing reason, the bone scan came back negative, I'm sure the doctors will still treat it as metastatic cancer. Presumably, the main treatment option now is "androgen deprivation therapy" (ADT) also known as "hormone therapy" (HT). How well your brother will respond to that is a matter of how hormone sensitive his cancer is. If he is lucky, he will get many years of life out of ADT. If he is still luckier, other treatments that are now in development will mature enough during that period to save him from death by prostate cancer. If he is unlucky, his response to ADT will only be short term. I would think the doctors would put him on ADT immediately. At this point, your brother should be seeing a medical oncologist who specializes in prostate cancer, if you can find one. A urologist is often not the best person to see. They know about prostate cancer, but their specialty is surgery to remove the prostate - something that would be too late in your brother's case. Best regards to your brother and all of your family. Alan > I have to say this is one of those newsgroups I hoped never to post in > but here goes anyway. [quoted text clipped - 3 lines] > cancer. > (snip) First, I must re-emphasize what has already been advised: Men whose fathers, brothers, and other first-degree relatives have prostate cancer (PCa) should be screened annually. This includes men whose mothers have/had breast cancer (BCa). It has been recommended that such screenings for such men at high risk should begin at age 35. It appears that Kevin and his brother are in the UK. Unfortunately, as I understand it, PCa screening is not well-accepted by the NHS. I'll restrain for now the comments that are at my fingertips, except to say that this might be a factor in the advanced stage at which Kevin's brother was diagnosed (dxd). Regarding the biopsy: what are the details of the results? Most importantly, what are the Gleason grades and total score? Copies of all records should be kept in a file. It will be invaluable. What is the "specialist?" If a urologist (a surgeon), this might not be the appropriate medic considering the dx. It will surprise no one here when I strongly recommend reading _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available on Amazon and elsewhere. I also recommend reference to the authoritative and comprehensive website of the Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/index.html ...beginning with the link "Newly Diagnosed." Last: there is a UK-based PCa forum, Prostate Action, at: http://p4.forumforfree.com/index.php?mforum=prostateaction It is an excellent source of UK-oriented information, as well as more broadly based viewpoints. Posting there are Brits, Yanks, Spaniards, an Enzed or two, an occasional Strine. It also has a weekly international chat on Saturdays at 2000 GMT. This is war with a merciless enemy, and the better prepared and empowered the patient is, the more likely an optimum outcome. Regards, Steve J "Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis." --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide." > I have to say this is one of those newsgroups I hoped never to post in > but here goes anyway. [quoted text clipped - 24 lines] > > Kevin http://www.bccancer.bc.ca/PPI/TypesofCancer/Prostate/default.htm I especially recommend clicking and printing the "Decision-making tree for patients". Its helped other UK patients. J > I came back from holiday a week ago to be told the news that my brother > (47) has a PSA of 243 and a biopsy has confirmed he has prostate > cancer. Thanks all for your responses, recommendations, links and good wishes. I've just ordered Strum's book as a starting point. We saw the specialist on Tuesday and he had no good news. I hadn't quite got my Brother's PSA level correct, it was 274 not 243. Alan was correct, the cancer has escaped to his lymph nodes, ribs and spine. The only treatment the specialist could offer was to continue to take the Cassodex (which seems to be helping a little) then review options when that stops working. That was pretty much all he said until I started asking questions. The specialist does, apparently, specialise in prostate cancer. I confess he didn't fill me with confidence when I asked about the Gleason score and he told me no biopsy had been taken and gave me several reasons why that was the case as I knew one had been taken. He did eventually find it in the notes (apparently they've changed the colour of the report which is why he didn't know it was there...) and the score was 8 - 4+4. He suggested Steve has had cancer for 2-3 years or perhaps longer. I asked about the prognosis and he said a study 10 years ago suggested a median survival time of 2-3 years - that wasn't much comfort either, is there nothing later based on newer therapy? Three of us went into the room and introduced ourselves as brothers. The specialist didn't suggest I or my other Brother should get our PSA levels checked until I asked him if that would be a good idea. He thought we should do that. Pity he didn't think to volunteer the information. You may be getting the impression that I'm not sure how much confidence we should have in this specialist and that impression would be correct. The problem is we don't yet know how many specialists in this field there are local to my Brother (we intend to find out) and what we don't want to do is alienate this one potentially leaving my Brother with a long journey to do when he's not feeling well. I feel like we're dancing on glass but it's vital to try to ensure he gets the best possible care that is within reach that he can. I asked all sorts of questions but both my Brother and I forgot to ask about diet - what's good and what should be avoided - and no advice was offered. Is there really nothing my Brother can do except take the Cassodex until it stops working? Perhaps Strum's book will help. It got a little warm in the room when I asked, politely, about the 3 month appointment delay (it was actually nearer 4). This was obviously going down a path the specialist wasn't comfortable with and he responded by telling me he could understand that I felt angry but it wouldn't do any good to get stressed or try to blame someone. What I actually felt was patronised at that point and have to confess that irritated me. I do realise we are all stressed (and the specialist must be as well - I don't envy his job) but nothing he may say about stress is going to make it any easier. I realise the delay made no difference in my Brother's case but what if it had? The GP's letter to the specialist made no mention of prostate cancer (hence the delay) and I firmly believe someone needs to make the GP more aware. Oh, I'm going to my GP tomorrow to arrange for a blood test for myself and I made a point of telling my other two Brothers' Wives (there are 4 of us) about the need for testing as that should ensure they get tested. Kevin > It got a little warm in the room when I asked, politely, about the 3 month > appointment delay (it was actually nearer 4). I do not think that the 4 month wait made much difference if that can be offered as of any therapeutic help to you. A psa of 274 is very high, and the doc said that your brother may have had PCa for a few years. I feel that is an understatement. I'm no doctor, but I think that it was probably much longer than that. Meanwhile, get yourself checked too. I sincerely wish you both the very best. Man, 47 is so so very young for this kind of crap. B.A. > We saw the specialist on Tuesday and he had no good news. I hadn't quite > got my Brother's PSA level correct, it was 274 not 243. Alan was correct, [quoted text clipped - 3 lines] > working. That was pretty much all he said until I started asking > questions. High, Kevin. I too am sorry you have had to look for this sort of newsgroup. I'd like to put in my 2 cents about your brother. Your doc was kind in telling the truth. Two years is about right. It really bothers me that most doctors tell most patients they have longer than they have. That said, if the hormone treatment drops his PSA to 4 or less, it could be longer. And, if it drops to 0.2 or lower, it could be six years (but, I would not hold out for that). There is also Taxotere, a prostate-cancer-specific chemotherapy. It's good for a few more months or maybe a couple of years if his body tolerates it well. And, in four years, there may be more. I've had cancer less than six years and the changes have been dramatic.  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 > I'd like to put in my 2 cents about your brother. Your doc was kind in > telling the truth. Two years is about right. It really bothers me that > most doctors tell most patients they have longer than they have. Hi Steve, Two years was actually longer than I expected but everyone is an individual so only time will tell. I just found it strange that the only study he could quote was ten years old and used a different drug as I thought there would be more up to date data. > There is also Taxotere, a prostate-cancer-specific chemotherapy. [snip] Thanks, that's the sort of information I was looking for. I did ask what could be done when the Cassodex stopped working but the specialist said we should cross that bridge when we came to it (which may have been a reasonable comment given that advances could occur in the meantime). I just wanted to know that there was something else although at that stage I guess it will be a balance between quality of life and treatment. To give the specialist some dues, he's right about the stress as I'm raging with frustration internally as there's nothing I can do. I cannot imagine what my Brother is going through under his outwardly calm exterior ;'-(. Kevin Kevin, you might read this publication. BTW, with respect to Casodex .... it may work for 3 moths or ot may work for 3 years and longer. That is why you cross the bridge when you get to it. In my case it worked for 4 months. Trial of Chemotherapy plus Hormonal Therapy as Initial Treatment for Unresectable / Metastatic Adenocarcinoma of the Prostate H. Henary, R.J. Amato; The Methodist Hospital/The Methodist Hospital Research Institute/Genitourinary Program, Houston, TX Background: Chemotherapy is a setting of hormone refractory prostate cancer has shown palliative benefit especially with substantial PSA decline strongly suggesting that disease modifying potential exists. Recently, chemotherapy is beginning to show a survival advantage. The stage is set for chemotherapy given earlier in a disease course. As a working hypothesis, we suspect that the transformation from an androgen-dependent to an androgen-independent phenotype is mediated by the expansion of an androgen-independent clone already present at the time of androgen deprivation. If this model is correct, then it would be desirable to bring treatment to bear on the androgen-independent component when the corresponding tumor burden is minimal. Thus, we view the androgen-independent component as analogous to "microscopic residual" or "micro-metastatic" disease for which adjuvant chemotherapy has shown to be effective in other contexts. Methods: Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. After completion of 3 courses of chemotherapy, hormone management [medical castration plus casodex (at the completion of chemotherapy)] is initiated at the start of chemotherapy and for a total of 24 months. Results: Nineteen men have been enrolled with a median age of 63 (48-76). Fifty percent of the men had no prior local therapy, while the other 50% either failed surgery, radiation therapy, or surgery plus radiation therapy. Fifty-nine percent of the men had Gleason 7, 12%/8, 24%/9, and 5%/10. Thirty-five patients presented with bone metastasis and 50% presented with nodal involvement. The median PSA reduction to date has been 95.6%. Conclusion: Enrollment is ongoing. Further information regarding PSA response, associated radiographic response, and toxicity will be presented. Gourd Dancer >> I'd like to put in my 2 cents about your brother. Your doc was kind in >> telling the truth. Two years is about right. It really bothers me that [quoted text clipped - 30 lines] > > Kevin Here is a link to the abstract: http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/? vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view&confI D=40&index=y&abstractID=32948 >Kevin, you might read this publication. BTW, with respect to Casodex .... it >may work for 3 moths or ot may work for 3 years and longer. That is why you [quoted text clipped - 76 lines] >> >> Kevin > Here is a link to the abstract: > (snip 189-character URL) That URL is so long it might not be possible for some folks to use it. Try this: http://tinyurl.com/n552o Regards, Steve J >I have to say this is one of those newsgroups I hoped never to post in >but here goes anyway. [quoted text clipped - 24 lines] > >Kevin you might get some hope from http://www.yananow.net/Links.html there are people here with worse diagnoses who are surviving, we are all different, so are our cancers |
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