Medical Forum / Diseases and Disorders / Prostate Cancer / January 2007
Newly Diagnosed
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Hugh Kearnley - 12 Jan 2007 15:00 GMT Well - a few days ago that is. I posted in another group - didnt see this one at first. I have I'm told, an advanced Prostate Cancer that has gone to the Bones. Had a bone scan, a PSA test of 140 - no Gleason score as yet. Currently taking Cyproterone, but had an injection of - Decapertyl? and will stop using the Cyproterone in two weeks time. That will be just in time to see an Oncologist for the first time. I'm 55, Diabetic T2 and also have CHD. I live in Glasgow, UK. I had been having a lot of lower back pain for several months - wrongly diagnosed several times as Urinary tract infections and given ever stronger Antibios and Painkillers until I lost my balance one afternoon at the GP and fell on my backside. I know very little about PC except what little I was told by a Urologist and my own GP I have to wait almost another two weeks to be seen by an Oncologist, so I'll learn a lot more then. I'll freely admit it - I am more than a little bit scared now the initial shock has worn off. However, I just hope THIS group is as friendly and advice-helpful as the diabetic ones. I'll post again AFTER I see the Oncologist. Thanks for listening.
JerryW - 12 Jan 2007 15:43 GMT > Well - a few days ago that is. > I posted in another group - didnt see this one at first. [quoted text clipped - 18 lines] > I'll post again AFTER I see the Oncologist. > Thanks for listening. Hugh,
I am extremely sorry to hear of your diagnosis, but am pleased to welcome you to our "not-so-little" club...the club nobody wants to join.
There are many folks on this fine newsgroup who are battling advanced stages of this disease and who will be joining in to offer both advice and support. The rest of us, all PCa (prostate cancer) survivors or caregivers of survivors, will be here with what support and help we can offer. We do have several of your countrymen (-women) here as well. I don't pretend to be all that knowledgeable in the various treatments of advanced PCa, but plenty of others here are.
We understand and can relate to your feelings of apprehension and fear at this terrible news. Please be assured that there are treatments available to combat even the most advanced stages of PCa.
Good luck and good health.
 Signature JerryW
Please respond to group; email address is not valid
2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes Fully continent by 9/04 PSA <0.1 since
kh - 12 Jan 2007 15:56 GMT > Well - a few days ago that is. > I posted in another group - didnt see this one at first. [quoted text clipped - 4 lines] > That will be just in time to see an Oncologist for the first time. > I'm 55, Diabetic T2 and also have CHD. too young. Way too young.
Sorry to hear about the mets.
They'll probably put you on a Testosterone blocker. Good chance that'll slow the disease to a crawl. The treatment will erase your libido, so you should factor that into your lifestyle.
Lupron ran my blood sugar to 300 and I'm not diabetic, so watch your fasting blood sugar if they give you Lupron.
-kh
Jean - 12 Jan 2007 16:12 GMT Welcome to the group Hugh, and we're so sorry to hear of your diagnosis but please know that there are a lot of folks here who care.
I'm sure someone with more knowledge than we have will be along soon to answer your questions.
Jean & Larry
Paul & Lisa - 12 Jan 2007 16:34 GMT Hi Hugh,
Welcome. I am sorry about your news. This is a very supportive group and I hope you find comfort here.
Lisa & Paul
Ed Friedman - 12 Jan 2007 18:56 GMT > Well - a few days ago that is. > I posted in another group - didnt see this one at first. [quoted text clipped - 18 lines] > I'll post again AFTER I see the Oncologist. > Thanks for listening. Hugh,
Sorry to hear about your diagnosis. Your oncologist will almost certainly recommend continous androgen deprivation therapy. However, you should educate yourself as much as possible - read books, read past postings in this newsgroup, and check out prostate cancer web sites. In your case, you might want to also read the abstract at:
http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/? vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view&confI D=34&index=y&abstractID=34127
(If you can't read the above link because of the length of the characters, here it is again broken into smaller lines, but you should put it all together in your browser).
http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a0 1d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view &confID=34&index=y&abstractID=34127
Good luck,
Ed Friedman
Steve Jordan - 13 Jan 2007 00:41 GMT On January 12, Ed replied to Hugh:
> Sorry to hear about your diagnosis. Your oncologist will almost > certainly recommend continous androgen deprivation therapy. However, [quoted text clipped - 13 lines] > > &confID=34&index=y&abstractID=34127 Or better yet, the 189 characters in Ed's link are reduced by tinyurl.com to the following 25:
http://tinyurl.com/yk9vsr
Very significantly, Hugh wrote:
> I know very little about PC except what little I was told by a Urologist and > my own GP Neither of whom might be up to date.
I recommend the following study references:
1. The authoritative website of the Prostate Cancer Research Institute (PCRI) at:
http://prostate-cancer.org/index.html
...and go first to the section "Newly Diagnosed."
2. The excellent text _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa (prostate cancer) specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available via the PCRI website and from any bookseller.
There are also several chapters of UsToo! International in the UK. See their website at
http://www.ustoo.com/
....and look up a nearby chapter. Members will likely have very good information with a local viewpoint.
I believe that UK medics (and their government bosses) consider the Yank treatment (tx) of PCa to be too aggressive. There is a great deal of controversy on that point. But controversy is common in all aspects of medicine. Each patient must decide for himself what is best.
What is important and IMO too often neglected in these controversies is the welfare of the patients who suffer while medics argue.
Here is information on a med onc in London who is strongly recommended by Dr. Strum, whom I trust absolutely:
Professor R T D Oliver Consultant Medical Oncologist Holly House Hospital High Road Buckhurst Hill, Essex IG9 5HX T: 0845 257 8522 F: 020 8554 4895 E: u.d.somasundram@qmul.ac.uk
The London Clinic 20 Devonshire Place London W1G 6BW
Hugh has been drafted into a war that is not of his choosing. His survival might very well depend upon his education about the merciless enemy that has attacked him (the same can be said of us all). As in any war, knowledge of the enemy is absolutely essential. Life has changed; probably permanently.
Study, Learn, Take Charge!
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."
RR - 13 Jan 2007 08:15 GMT Indeed this group is most friendly and helpful. You will find that you are not the only one in the world facing a serious problem and members will share with you similar experiences.
>Well - a few days ago that is. >I posted in another group - didnt see this one at first. [quoted text clipped - 18 lines] >I'll post again AFTER I see the Oncologist. >Thanks for listening. J - 13 Jan 2007 10:13 GMT > Well - a few days ago that is. > I posted in another group - didnt see this one at first. [quoted text clipped - 18 lines] > I'll post again AFTER I see the Oncologist. > Thanks for listening. Find Your Nearest Support Group in Scotland http://www.prostatescot.co.uk/HTML_Pages/Groups.html Ask them if they have information about prostate cancer spread to the bones. If they don't call the office of the oncologist you're scheduled to see and ask if they have brochures that you can pick up or have mailed to you about treatment options and questions to ask, before arriving at the oncologist's. Some find there's not enough time or they only remember questions after leaving or don't remember what was said or didn't have time to write things down. If someone can go with you....or tape record the meeting, so yuo can ask questions and not have to remember or write the questions down.
http://www.cancerbackup.org.uk/Resourcessupport/Organisations/Searchall/237 Macmillan Cancer Support: Scotland Scottish office of Macmillan Cancer Support which supports and develops services to provide specialist care for people with cancer at every stage of their illness. Services include Macmillan doctors, nurses, and other health professionals. Also funds buildings for cancer care and information, and offers patient grants to people with financial difficulty because of their illness. Services are free, referrals via GP, hospital doctor or nurse, or district nurse.
These are the two medications given to you by the urologist <http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonalth erapies/Triptorelin>
<http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonalth erapies/Cyproterone>
i hope this helps for now. J
Steve Kramer - 13 Jan 2007 12:48 GMT > Well - a few days ago that is. > I posted in another group - didnt see this one at first. First, Hugh, welcome to our little newsgroup. You have done well in finding us. You will get well-informed opinions here and very little soft soap.
> I have I'm told, an advanced Prostate Cancer that has gone to the Bones. > Had a bone scan, a PSA test of 140 - no Gleason score as yet. Your Gleason, while interesting, is probably of less relavance at your stage. Your stage (T4N?M1?) means that your cancer is incurable with current treatments. The Gleason may give you some hint of how fast the cancer would progress, all other things being equal. However, nothing is equal in this game.
> Currently taking Cyproterone, but had an injection of - Decapertyl? and > will stop using the Cyproterone in two weeks time. It sounds like what we call Casodex and Lupron. I am on both. The side effects can range from almost none to severe. Mine are less than most and I attribute that to my age (52) and the fact that I walk 3-5 miles a day, 3-5 times a week (less in Winter).
The farther this treatment takes your PSA down, the longer you will likely live. That's pretty much the long and short of it.
Furthermore, if you can live another 8 years, you may see a cure.
> I had been having a lot of lower back pain for several months - wrongly > diagnosed several times as Urinary tract infections You may be happy to know that the wrong diagnosis probably had very little to do with your long-range prognosis. Ordinarily, PCa is a very slow growing disease and if you had pain from mets, it was already too late.
Finally, the GOOD news. There are very good medications for advanced prostate cancer today that were not available even 10 years ago. Doctors can give us a fairly decent life.
Philosophically speaking, God has given you and me a knowledge as to how we are going to die and plenty of time to prepare. To some degree, even when. How many people can say that?
 Signature PSA 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 PSA <0.04 Non Illegitimi Carborundum
kh - 13 Jan 2007 13:39 GMT > Your Gleason, while interesting, is probably of less relavance at your > stage. Your stage (T4N?M1?) means that your cancer is incurable with > current treatments. T4, yeah, I don't know where the T2 came from. ...
> The farther this treatment takes your PSA down, the longer you will likely > live. That's pretty much the long and short of it. > > Furthermore, if you can live another 8 years, you may see a cure. I'm guessing that it'll be sooner than that. Science, especially genetic engineering, is moving really fast. Something like the way Prostascint binds a radioactive tracer to the prostate proteins, deliver a package of markers, the T-cells attack, bang, you're cured.
Easy to write science-fiction, harder to actually do it. Lots of smart people out there working on the problem from different angles.
When I was diagnosed in 2004, the I read books written in 2002 that talked about 3DCRT as the standard external beam radiation therapy and something called IMRT was the future.
When they put me on the table, it was an IMRT that treated me.
In December of 2006, INOVA put up banners up for their Trilogy radiation machine. Dynamic beam adjustment under computer control, the three gold targets. Much more precise, a lot more software in it than an IMRT.
Three different models of radiation machines in about 5 years. Each a big improvement of the previous. I'm hoping for a medical breakthrough in about that timeframe.
No way to know, of course.
The trick is to go with what works now. For mets, it's ADT and doing everything to mitigate the side effects. Hang on for the ride.
-kh
Hugh Kearnley - 14 Jan 2007 07:05 GMT Thankyou all very much for the swift responses, kind advice and recommendations. I'm sorry if my figure "T2" wasn't properly understood - MY fault entirely - it relates to my Diabetes - I'm "TYPE 2" and to avoid any possible misunderstandings - I should have not have shortened it - again MY fault - I was just making assumptions - CHD is Coronary Heart Disease. Again though - thanks so much for all the positive information. There is apparently a support group here is Glasgow and I will be getting in touch with them too. Thankyou!
> T4, yeah, I don't know where the T2 came from. Steve Kramer - 14 Jan 2007 12:08 GMT > I'm sorry if my figure "T2" wasn't properly understood - MY fault > entirely - it relates to my Diabetes - I'm "TYPE 2" > and to avoid any possible misunderstandings - I should have not have > shortened it - again MY fault - Nonsense, Hugh. At the worst, this is a no-fault medium. We have so many people, from so many cultures and countries, there are bound to be misunderstandings of abbreviations and phrases seemingly common to all.
However, in this case, I knew exactly what you meant. But again, we have so many messages, none of us have the time to critically review all of them. So, when an abbreviation very common to prostate cancer comes up (e,g., T1, T2, ...) we are quick to jump on that which we think is familiar.
It gets straightened out very quickly, as you saw.
kh - 14 Jan 2007 15:38 GMT > Thankyou all very much for the swift responses, kind advice and > recommendations. > I'm sorry if my figure "T2" wasn't properly understood - MY fault entirely - > it relates to my Diabetes - I'm "TYPE 2" I read it as T2, Diabetic. I'm using a 12 inch screen at 1024x768. I can barely see comma's and periods.
Anyway, I hope you have the bad news, good news in perspective.
The bad news is that at this time, advanced prostate cancer is incurable. Given enough time, it will kill you. The treatments have unpleasant side effects. Some of the treatment's unpleasant side effects are indistinguishable from aging. Advanced prostate cancer itself is a bad way to go.
The good news is that it's prostate cancer. It's usually slow growing. There are treatments that will slow it even more. There are many coping strategies.
The more optimistic are anticipating a "magic" cure.
Even the less optimistic come to terms with it. Most of us are over 50, some are over 60, 70, 80, and have to deal with aging issues anyway. This doesn't make it easier but the strategies are the same:
Find the best docs you can.
Do your own research.
Get aggressive on your health, diet, exercise; keep to your medical schedule.
Live life to its fullest; make every minute count double.
For example, you ever have a $50 bottle of wine? How about building a home theater in the basement? You don't need top end, DLP, $200 speakers, good chairs, and coat of paint go a long way. Some folks like sports, others might always wanted to get their lady something from Neiman Marcus, "... because you're special to me."
If you have an older car, a wash and wax, clean windshields, toss out the McDonalds' wrappers and cups, and properly inflated tires will improve that experience.
-kh going to clean my windshield now.
I.P. Freely - 15 Jan 2007 01:01 GMT > Some of the treatment's unpleasant side > effects are indistinguishable from aging. So say lazy or ignorant physicians! You wisely and accurately covered yer butt by invoking the "some" word, but *many* of the problems they blame on age are in fact preventable and/or correctable because age has little to do with them or is an indirect contributor. Most of ADT's SEs are prime examples of problems physicians incorrectly dismiss as age-related and thus untreatable.
I.P.
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