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Too much...too much

blind referee
Posts: 4
Joined: Jun 2010

I got the news a week ago Wednesday. Go in for a CAT Scan and bone scan this coming Tuesday. I found this site and have been trying to follow it all. Played golf today and hardly thought about it, then came home and nearly fell apart. There's so much info out there, how do you sift through it all? I don't understand all the lingo, procedures, and while I just feel like putting myself in the hands of my doctor, there's so much advice to "learn all you can," "ask questions," etc. You need to have some knowledge so you can ask intelligent questions. Can someone recommend a good web site (not one that is operated by someone with a specific agenda) which plainly and understandably notes treatment options? Thanks for helping.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

We've all experienced the overwhelming emotions, decisions, etc. that you mentioned. There is no "right answer", although you'll search for it. Nobody can or will tell you what to do. These are all individual choices. Pick a treatment that's right for you. I had my surgery at Johns Hopkins. However, if you Google "Prostate cancer Mayo Clinic", they have a good web site. Click on "Treatments" and they have a concise explanation of various treatment options (including alternative treatments). This will get you started. When I started this process, I found that "watchful waiting" was a function of your age, PSA scores, and biopsy results. I didn't feel this was a good option for me. Several urologists, including my surgeon, rejected hormone therapy outright. So, it was a choice among "seeds", open surgery, or robotic surgery.

Two major points: 1) You're in the right place. The contributors to this board have a lot of experience (unfortunately) and are very supportive, and 2) include your wife, husband, partner or whatever in the discussions because he/she will be your greatest asset.

You are not alone.

blind referee
Posts: 4
Joined: Jun 2010

Tom, I live just outside of Baltimore (Towson), so once the dust settles (i.e., after the upcoming scans), I may give Johns Hopkins a call (they have an ad on local television, but I'm trying not to be swayed by television ads). I guess the first thing I need to do is hear what my doctor recommends, then go from there. Thanks for the web site, I'll check it out.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

We all go thru depression and all the negative feelings for the first 3 to 3 months.

We don't know your numbers, please list them. age, gleason, number of cores taken , number positive. involvement, general health.

Note, the american urological society does not recommend a bone scan for those with geason scores of 8 or less.

I'm here in CA. and I know as well as most at this site that Johns Hopkins is one of the best hospitals in the world, if not the best for prostate cancer treatment...........if I was in your place, I would not do any of the tests that your doc recommended and immediately make an appt with Johns Hopkins to switch docs.

Good luck
Ira

blind referee
Posts: 4
Joined: Jun 2010

Thanks for your comments. I'm not fully up to snuff on all the lingo. I'm 63 years old and have had a digital exam every year for quite a while. Apparently, my psa was either 0 or low enough that there was no indication of cancer. I believe in my biopsy 10 cores were taken, with gleason scores ranging from 5 to 8 (two had a score of 8). Maybe my urologist is being overly cautious, but he recommended the CAT scan and the bone scan. As you know, sitting in the chair in front of him while he delivers the bad news, I wasn't in a frame of mind to dispute him (who am I?). At this point, I guess it would be best to have the tests, then take some time to sort through it all (and do a lot of reading!).

142
Posts: 169
Joined: Dec 2009

I would respectfully disagree on the suggestion to avoid tests that your physician prescribes. I had most cores Gleason 4+4, so might be a worse-case, but the CT & bone scan cost me a day of time, and just moved blowing out my annual insurance co-pay a little earlier.

My doctor almost expected to see bone involvement - he was preparing me for the worst I guess, so the "nothing seen" results of the two tests were an incredible boost to my spirits, and allowed them to continue to consider surgery. They advised that if the scans had shown something, they would go straight to HT & radiation, since it would effectively be too late for surgery.

Are they prescribing tests to rake in cash? Perhaps, but I've seen nothing to indicate that.

Is a second opinion called for? Absolutely.

Did I get "too much" radiation because of the scans? Some would say so, and if so, I'll probably never know which one of the many in this year-long process might be the "bad" one.
Did I raise the out of pocket cost of my treatment for the year? No.
Will my insurance cost more next year? Probably will go up regardless.

But the impact on the way I was feeling at the time of diagnosis was eventually much more positive than any downside I might consider from one more scan.

(I've had DaVinci with follow-up IGRT. Post-op path upgraded the G to 4+5.)

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I'm thinking that a bone scan has a purpose in various situations, especially when the numbers are high, but also there are other tests such as an MRI with spectroscopy that might be more appropriate......I am definately not against testing, just for doing the tests that are will best diagnose the condition

A bone scan may be appropriate for the original poster since his numbers are high, however I believe that the docs at john hopkins are the experts, and they should make the decision.

Also, a lot of times in hospitals , especially fancy hospitals such as John Hopkins, they like to do these tests at their own hospital....many times they have more sophisticated equipmentand better trained personnel.

Dr. Strum in his book discusses how the bone scan is freely prescibed in situations that are not appropriate.........and how much revenue is gotten from the test.....not saying that it is not appropriate in situations, but he says that the test is overprescribed, and is money making.

Ira

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

mrspjd
Posts: 688
Joined: Apr 2010

a few suggestions: you might want to request a copy of your doctors written report(s) from your visits along with a copy of your biopsy report. This way you will have your info available when you do your research and/or if you decide to get add'l consults/opinions. We took a small hand-held voice recorder to doctor visits and once we optained the doctors permission, we recorded the visits to play back at a later time when we understood more. It was a valuable asset to have. As others have stated, being close to Johns Hopkins is wonderful. As you educate yourself, you will find that there is a well known Pathologist, Epstein, at J-H and many have chosen him to send their biopsies to for a second opinion, when indicated. pjd's initial biopsy came back as a 3+3=6, but upon 2nd opinion from J-H, it was changed to a 3+4=7 and had add'l important info that the first report did not contain. This helped us to decide on obtaining further testing and to have add'l doc consults. It also helped to more accurately stage pjd's PCa as it went from an initial clinical stage of T2b to a clincial T3c. This info helped us in deciding on a course of treatment that was appropriate for him. Hope this is helpful.
Best,
mrs pjd

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Great point about the second opinion on the biopsy. As Blind is close to Johns Hopkins that ought to be a no-brainer. I would also expect that your perspective as a spouse would be very helpful to Blind. For me at least, going through this with my wife made a tough task much easier, and her observations during consults was very useful and she remembered things I missed while writing things down. A tape recorder is a great idea.

mrspjd
Posts: 688
Joined: Apr 2010

Kongo,
Thanks. Your post was most informative and will hopefully be very useful for BR and others. Although this may not be the best thread to make this comment to you, I will do so anyway: I wanted to say how impressed I was with your diplomacy as relates to your "Cyberknife update" thread and your posts in response to the many comments and heated debate/discussion that followed in that thread. I hope in the future, those posters will take their discussion to a new thread to voice their opinions and to debate the merits of that and other various treatments and by doing so, respect your thread for "updates" on your personal journey. Please continue to post your cyberknife updates, hopefully, on a new thread that will reflect your shared story.
Best,
mrs pjd

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mrs PJd, thanks and I appreciate your comments. Frankly I was a bit surprised at the controversy that erupted and the range of emotions that came out on that thread. It's clear that our individual treatment choices is an intensely personal matter and strikes to the core of who we are as men and human beings. While there will certainly be future debate about options, I share your hopes that we can remain civil and respectful of others choices and continue to freely exchange information that might be helpful for those seeking answers. Rest assured that as I go through my treatment I will continue to post my personal experiences.

I very much appreciate the perspective of the spouses in this journey we men go through. I think the wives get PCa in a way that although may be different biologically, is very real emotionally.

I hope that as your perspective gels in the wake of your husband's diagnosis and treatment you will share with us your feelings and methods of coping.

Best,

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Blind, like others have said here we have all been where you are now and it certainly can be very overwhelming. Having said that, you really must shake off the bewilderment, start studying, and make yourself smart. There are just too many options with too many potential outcomes to blindly (no pun intended) follow the recommendation of a single doctor or anyone else. How you ultimately deal with this disease should be a well-informed decision that is based on as much knowledge as you can garner. It's a big task, sure, but doable. Thousands of others have traveled similar paths.

A couple of recommendations that you might find useful from my own experience:

First, get a complete copy of your medical records from your primary physican and urologist. They are yours and the doctors are required to give them to you. To understand how a potential treatment option applies to you you have to know your PCa statistics: Biopsy pathology, Gleason score, stage, PSA history, prostate volume, and other general health issues which might affect the choice you evcentually make about treatment.

I found it helpful to organize a file (one of those multiple tabbed folders you can get at Staples) that has biopsy reports, lab reports, records of physican visits, notes from consults, medications, insurance information, and so forth so that you always have everything you need in a single place.

If you've been doing annual physical exams for a while, your medical records will likely have a record of your PSA history. There are several nomograms available on the internet that enable you to enter you PSA history and they automatically calculate things like PSA velocity (how quickly your PSA is rising) and PSA doubling time (how long it will take your PSA to double in value). You can also calculate your PSA density by dividing your PSA by the volume of your prostate (which should have been calculated when they did the biopsy). These readings, along with the Stage, Gleason, and number of cores and the percent involvement, can be important pointers in determining the best treatment option for you.

There are hundreds of clinical studies on the web. Unfortunately, they are frequently difficult to understand and often use medical jargon that most laymen don't understand. I found it useful to have a medical dictionary and Gray's Anatomy (purchased for only a few dollars each at a used bookstore) to have with me all the time while I was doing research. Download a color picture of the prostate and surrounding organs so you can understand the anatomy of what each treatment option will affect.

Before you jump into the different studies, I would recommend reading a few books first. Several here have mentioned some great PCa reads. I would add "The Big Scare: The Business of Prostate Cancer" by Dr. Anthony Horan to the list. I went to Amazon.com and ordered every prostate book I could download to my Kindle and read about 10 in the first few weeks after diagnosis. After that background, it was easier to sort through the clinical studies.

As far as consultations, your urologist will likely schedule a more formal consultation with you in the next few weeks. I would also seek out radiation specialists who treat prostate cancer, and oncologists. When you begin to narrow down your choices, you will probably need further consultations with the specialists who have the potential to provide the particular treatment you want.

Take a spouse, partner, or significant other with you to the consults and both of you take notes. You need another set of ears during these sessions. Don't feel shy about asking "dumb" questions. Ask about anything you don't understand. Remember, the doctor works for you...

Good luck and stay in touch.

blind referee
Posts: 4
Joined: Jun 2010

Don't know if anyone is still reading this thread but...

I finally got in touch with Johns Hopkins and I was transferred to four different lines before I got to the right one. While talking to them, they absolutely would not make an appointment until/unless I told them my Gleason and PSA. Since I was unsure (okay, my bad, I should have paid more attention when I met with my urologist), I had to hang up and call my urologist. Once I got them, I called JH back and gave them the info. As we discussed an appointment, I asked about insurance. I was told JH had three urologists, and none took Blue Cross/Blue Shield. Hello!?!? Johns Hopkins doctors don't take Blue Cross/Blue Shield? Okay, I can pay out of pocket for an appointment, but if I used them for surgery, I would have to pay the upfront costs then bill my insurance.

The long and short of it is that, while I do believe Johns Hopkins is probably the best, they certainly did not make me feel very comfortable. I think I'll stick with my personal urologist, a great guy who actually recommended that I get a second opinion.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Blind,

I can understand being confused as you start this process but as I recall, you were diagnosed a month ago and you still don't know your Gleason and PSA but are considering surgery? Frankly, none of the potential options a second opinion will give you will make any sense at all until you know what those numbers are and understand the implications with respect to treatment options. As frustrating as it may be, you can't just call up a hospital and say, 'hey, I've got prostate cancer I need an appointment to talk about surgery.' Depending on your Gleason and PSA and staging, surgery may not be a good option for you at all. On the other hand, there may be other options that offer equally excellent long term outcomes that could be more conducive to maintaining your quality of life.

You really have to to your homework on this one. This discussion forum is a great place to start gathering information but there's other research you ought (need) to be doing as you prepare for appointments. You need to understand open versus robotic surgery, brachytherapy, HDR brachytherapy, XBRT, IMRT, hormone therapy, active surveillance, cyberknife, proton therapy, HIFU, and on and on.

As unfair as it might seem to have to do all this, if you just go with whatever your urologist tells you to do, you can wake up one morning in two or three months (or yearas) and say: "What was I thinking?" It's too late then. We don't get any do overs in choosing our first treatment course.

Beating prostate cancer takes a partnership between you and your medical team. They will do their part but you have to do yours too and be an informed patient who has enough information to ask intelligent questions. Several posters on this threat provided a superb list of reference materials. I hope you can read some of them before your appointments.

Good luck to you

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Kongo is giving you excellent advice.. Additionally, get a copy of all tests that you have taken so you can bring them to any doctor that you might see. You also need this information for your research. A doctor has to release this information to you..........

I'm sorry to tell you that this disease is life threatening....you need to get moving.

It's ok to be a blind referee.......but do not be blind about this.

we are here to help you

Ira

Randall72
Posts: 34
Joined: Mar 2011

Blind......Look into Abington Memeorial Hospital, Abington,Pa. ( about 3 hrs away just outside Philly) I had my robotic surgery there,everyone was great.Even from the beginning with insurance. My hospital bill was $66K,I have to pay only $2,700. And paid a $250 admission copay. I'll give you my surgeons#, and/or the prostate cancer centers # if you like. Good luck! Im a 3month survivor,post op PSA 0.05.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

This is a pretty exhaustive list of some of the best books out there on prostate cancer that I have cut and pasted from this site from others...I have not read them all but many on here have read many of them and would have comments about them.

Reading Materials for Reference:
Recommend-Guide to Surviving Prostate Cancer-Second Edition
Dr Patrick Walsh
Prostate Cancer Survivors Speak Their Minds – Arthur L. Burnett II, M.D. – Director, Male Consultation Clinic, John Hopkins Medical Institutions & Norman S. Morris, Forward by Senator John Kerry
Recommend-The First Year Prostate Cancer-An Essential Guide for the Newly Diagnosed
Chris Lukas
Recommend-Saving Your Sex Life-A guide for Men with Prostate Cancer
Dr. John Mulhall
Prostate Cancer Meet The Proton Beam-Apatient's Experience
Fuller Jones
Recommend-You Can Beat Protate Cancer and you do nto need surgery to do it
Robert J. Marckini
Recommend-Surviving Protate Cancer without Surgery-The New Gold Standard that save your life and life style
Dr Michael J. Dattoli
Conquer Prostate Cancer
Rabbi Ed Weinsberg
Recommend-Eat to Beat Prostate Cancer Cookbook
Ricketts
Page with Free Guides to Prostate Cancer and Exercise and Nutrition
http://www.pcf.org/site/c.leJRIROrEpH/b.5814067/k.C966/Guides.htm

Comprehensive Book list on Prostate Cancer - http://www.wellnessbooks.com/bookstore/

Best of Luck...we are here to help in any way we can.

Randy in indy

NM
Posts: 214
Joined: Jul 2009

Hi you didnt mention your stats here so I advise research,read,prayer and patience. Most of the time you have a few months(took me about 3 months). So much depends on your psa and gleason scores.

Take a deep breath,bring you family into it so they are in the loop ,great for you to.
John Hopkins did my second opinion,and by the way did you get a second opinion if not do it before deciding anything.

I chose Davinci last Sept. and other than some erection problems which are improving slowly my life is absolutely back to normal..

Hope this helps some.....Nick age 53

muttsrule
Posts: 52
Joined: Sep 2009

Hi, b.r. An addition to Randy's excellent list is 100 Questions & Answers about Prostate Cancer, 2nd ed. by Pamela Ellsworth, MD., c.2009. Check to see if there's a later edition; then get that one. My urologist gave me a copy. There's a website too: www.jbpub.com. Someone else suggested you post your "numbers." I agree. Your friends here can help a lot if they know your PSA, Gleason, and stage. Me: PSA 4.2 (now 0.0), Stage T2a, Gleason 3+3. I chose cryotherapy last September and feel it has worked for me very well. Persevere! You have time to study your options. Cheers & Peace, John in Seattle.

mrspjd
Posts: 688
Joined: Apr 2010

What you are feeling is what we all feel, including your significant other (I'm the wife) and it is completely "normal" to feel overwhelmed and not know where to start. The confusion will probably get worse before it gets better, but it WILL get better as your education evolves. Take your time and as you begin to educate yourself, questions, terms, etc. will make sense and fall into place. We liked the book "A Primer on Prostate Cancer, the empowered patient's guide" by Dr. Stephen B. Strum. Another must read is the very basic PCa info notebook primer that you can obtain FREE from the American Cancer Society on Prostate Cancer...it is a short, easy to understand, basic read. Just call the ACS and have them mail you that info. They can also put you in touch with PCa support groups (called "Us Too") in your area, which is an important first step connection. If you have "The Wellness Community" in your area, they too, will have PCa resources as well as a support group for PCa. Talk to lots of different doctors such as open and robotic surgeons, radiological oncologists, urological oncologists, etc. When it is time to make a treatment decision, choose a doctor that is most experienced and skilled in his/her treatment field.

In terms of this discussion board, you will get alot of good info & advice if you take time to read the posts and things will gradually fall into place as you begin to understand what you need to know about YOUR type of PCa. A few warnings: Not only will you find a few snake oil salesmen, but you will also find well-intentioned posters with an agenda promoting the successful treatment that worked (or not promoting the one that didn't work) for them. Most of the posts are sincere, and you will come to know the difference. Every man's PCa is different and what worked for someone else may not be right for you. You will need to find out for yourself more about your unique PCa by taking your time and doing your homework before making any decisions. As far as treatments go, in my previous posts, I've written about pjd's PCa & how critical it was for us to get his PCa clinical stage correctly diagnosed before making any treatment decisions. PCa stages range from T1 to T4 and your treatment decision
option(s) will fall into place when your staging is correctly done and you've consulted with several doctors. I cannot emphasize this enough. You are doing the right thing by getting your bone scan and pelvic CT to rule out metastasis, and there are other tests as well (such as an endo-rectal MRI and a color dopler ultrasound) to further determine your clinical staging, depending on your numbers, i.e., PSA, gleason score, # of cores positive, % of cores positive, whether PNI (perineural invasion) was identified, second biopsy opinion, etc. There is low volume PCa and high volume PCa, prostate contained and locally advanced, etc. This may sound confusing now, but know that it will all make sense soon and this will empower you to ask the right questions and make the right decisions.
All the best,
mrs pjd

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I read Dr. Strum's book as well........in fact I went thru it 2 or 3 times because it very technical........I beleive it to be a great reference book.....by the way dr strum is retired now, but donates a lot of time to a web site, I forget the name right now.......I heard a lecture by him at a support group that I frequent here in ca.....He is really brilliant.

By the way in his book, he does not avocate bone scans for those with low numbers.....I don't have the book available now, but I beleive that he talks about rip off of doctors who prescibe this for those with low numbers. I also remember that there is a chart listing occurances of metastasis by numbers.......it's really very unlikely to have metastasis with low numbers.

ira

steckley
Posts: 100
Joined: Aug 2009

I don't have much to add to what the others have said ... but, knowing what I know now, if I were going to rely on the advice of just one medical institution for advice/treatment of PC, I can't think of another group better than John Hopkins. You are fortunate to live so close. Best of Luck.

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi mate,
I found this site very helpful

http://www.healingwell.com/community/default.aspx?f=35&p=1&x=25&ord=ld

Cheers,
Mike

griff 1
Posts: 114
Joined: Jun 2010

mike is right this is a good website, go to it and read. good luck griff

Trew
Posts: 891
Joined: Jan 2010

All I can say this might be your only chance to get some of these tests done- so go for it. It'll give you something to talk about at family get to gethers.

Really, don't fool with PC. If you see it in end stage, the pain, suffering, well, just get the scans. You are playing defense now- not the lottery.

janekirstine
Posts: 24
Joined: Nov 2010

I just quickly scanned this thread and there are so many great suggestions for all PC patients. I cannot stress the importance of keeping a NOTEBOOK - a three ringed binder - with all of your test results, doctor names, articles, etc. etc. Start today if you have not already. Request copies of every PSA test. Keep it organized. Hopefully you will not need it later, but you will be glad you have it. Take it to your appointments. It was one of the best things a neighbor told me to do 2 years ago, before she even knew "nuclearduck" had PC. A good idea for all people to do to keep track of their health.

I am at the screaming stage right now where important treatment decisions will be made soon. So much information out there. I was going to start a thread just for screaming and relieving stress but just typing this helps! Laughter works too! I can only imagine how the men feel.

Hugs for everyone!

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