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Posted 6/2/2012 7:19 PM (GMT 0)
Hi all,

I recently was given the news of having prostate cancer (4 days ago). I was told I have a Gleason score of 4 + 4.

I see the specialist in a couple days. I am so confused recently on where to get information, I have ordered the book from Dr Walsh and will read it, I want to become informed and hopefully count myself as a fighter to beat this.

Other information would be great, I guess I have been reading some here and felt I show post and hopefully gain from others experience and knowledge on the matter.


cheers and thanks
Posted 6/2/2012 7:42 PM (GMT 0)
Welcome to HealingWell. I'm sorry to hear about your diagnosis, but you landed in a good place. There are lots of great people here who are both well-informed and supportive. I think you'll get more and better information here than you'll get from any doctor. I know I did.

You're also off to a good start with the Walsh book. It's the bible. I suggest you work your way through it, along with the threads here. And ask questions about whatever is confusing. It's a little mind numbing at first; we've all been there.

Let us know what your doc is telling you, and it would be good for you to get a copy of your biopsy report. Many of us post a signature with our stats, which is helpful. Specific info on your report will help us help you. How many cores positive, percentage of cancerous cores, stage, etc. -- all helpful information.

Good luck and hang in there. There are a lot of Gleason 8 patients who are doing quite well, so don't freak out. You've got a good chance at a good outcome and a good, long life.

Best,

Jonathan
Posted 6/2/2012 7:55 PM (GMT 0)
Cannuck1964

Sorry you have to be here, I was recently diagnosed in March of this year, I have just finished the phase of choosing an option of treatment. I have also received my first dose of Lupron. I have found this site to be very informative by engaging in the blogs and experiences of others....Hope this site helps you also...

PSA 10.7
Dx March 2012
Biopsy 6 of 10 cores positive 5% to 80% Bilateral
Bone Scan Neg.
Gleason 3+3=6
May 2012, 4 month dosage Lupron (side effects are kicking in) :(
IGRT and Brachy to follow as a primary treatment.
Posted 6/2/2012 8:08 PM (GMT 0)
Things are a little tough with this news I have to admit. Hard to come to terms with this as I have always been a person to plan for the worse and hope for the best in situations, just not sure if that is appropriate in this instance.

From reading others experiences, it sounds like 8 - 10 scores are considered more apt to have recurrence of the cancer. I just had my biopsy done 10 days ago, and from what I have read, any surgery should wait 4 - 6 weeks anyways from then.

I am wondering how difficult it will be to work over the next while, will these tests (ie bone scan, MRI, etc) leave me unable to work? Will other treatments do the same (ie the hormone or radiation treatments)?

Anyways, thanks
Posted 6/2/2012 8:30 PM (GMT 0)
cannuck -- sorry for the bad news man.  the tests will not affect ability to work.  my treatment was HT, BT and IGRT.  i had plenty of side effects but i worked.  i am self employed though and didn't work much and can pretty much call my own hours.  good luck to you.

ed

 

Posted 6/2/2012 8:30 PM (GMT 0)
Cannuck, welcome.
Aside from what is going on in your head, you should have no trouble working while you are having diagnostic tests. I know this can be a troubling time - hang in there. Things will get better when you have decided on a treatment approach. If you choose surgery, you will need to be off for a couple of weeks or so during recovery. Walsh's book is excellent. Go to your appointments with a list of questions. There are resources here to help you create the list.

The biopsy Gleason score is not necessarily the total answer - I have a friend who started out with a G9, and after surgery, the pathology results came back with a G7. A majority neither get upgraded nor downgraded, though.

Waiting for 4-6 weeks or even longer for treatment is not likely to be consequential, so don't feel rushed.
Best regards, Jeff
Posted 6/2/2012 9:06 PM (GMT 0)
Welcome to the forum, hate you have to join us. You've gotten good advice from the guys. Since you mention surgery, even though you haven't made a decision yet and shouldn't rush to anything without taking time to study all your options, here's link to a thread which will get you prepared to know what to expect, from the surgery standpoint. You need to read it and know before your decision just what each treatment can entail.

www.healingwell.com/community/default.aspx?f=35&m=1717641
Posted 6/2/2012 10:03 PM (GMT 0)
Hi Cannuck, I assume you're a Canadian, as am I and several others here. Sorry to be welcoming you, but as you'll discover, if you have PCa this is a great place to be. It's scary business, alright, when doctors tell you you have cancer. For me the worst time since hearing the news three years ago was the time between being told, and deciding on treatment. Once I woke up after surgery the stress began to de-escalate. So, while you're bound to be an unhappy camper right now, life will return to at least closer to normal.

I look forward to reading more posts from you.

Sheldon AKA Sleepless
Posted 6/3/2012 1:27 AM (GMT 0)
Thanks everyone. I have not made any decisions on treatment as I have no idea of what is available. side effects or recovery statistics. I most likely will be posting off and on about how things go even if just to have an outlet.

Answers and questions I am sure to find here from people who have experienced similar things. I worry as I am self employed (software engineer) and have to ensure my business still runs, but in the long run I have decided to put it secondary until I find out more on my condition.

Between the things running in my head and looking for answers to questions I have never thought about before leaves me having enough on my plate. I am glad I found a place where I can gain more information from people who have more experience with this disease.

Thanks and I hope that my experience with this may help another out in the future in knowing there is support for people regardless of anything else..

cheers and thanks
Posted 6/3/2012 2:00 AM (GMT 0)
Welcome to HealingWell. A biopsy result of 4+4 pretty much prevents me from saying the usual "hope you don't need to be here", so I'll offer my opinion (non-medical) on your questions -

any surgery should wait 4 - 6 weeks -

That is the opinion of my uro/surgeon - 6 weeks minimum. The issue is healing of the rectum wall after the biopsy.

I am wondering how difficult it will be to work over the next while, will these tests (ie bone scan, MRI, etc) leave me unable to work?

- I had my Bone scan and CT in the same day. It will take pretty much a full day, as the radioactive IV needs 3+ hours to be absorbed, but in my case they put the CT in the middle. I have since had a new bone scan, and the process was the same. I went back to my "sitting at the computer" job, The mental stress of the day will be of more impact than the medical procedures.

Will other treatments do the same (ie the hormone or radiation treatments)?

- I can't say for HT - have not done it yet. I did surgery and then as soon as possible after, adjuvant RT (see my thread linked in the signature for a day-by-day).

RT had a number of side effects. The most significant for work was fatigue. By 7pm in the evening I was ready for bed, and even two years out I suffer that still unless I take an afternoon nap. There are bowel and urinary issues, but working from home, they are a daily bother, not a work issue. They have killed the travel part of my job (incontinence from surgery started that death), and if I were forced to be in the office everyday, there would be significant issues.

Every treatment has potential side effects that impact some more or less than others. Be sure that is a real part of discussions with potential doctors.

Posted 6/3/2012 4:38 AM (GMT 0)
Gleason 8, 4+4=8 puts you in the high-risk group. Many other factors come into play when deciding on treatment choices..Your age, PSA level, how many positive cores, what percentage of the core(s) tested positive for cancer and the results of your coming tests and scans..All these things will be discussed with you in great detail and your treatment options explained...

I was Gleason 9...I got the Full Monty, surgery, hormones, radiation..I celebrated my 70th birthday today, healthy and active, no sign of the cancer...So yeah, for the next six months your life is going to be somewhat different, but you will make it, and look back on this as just another rough spot in the road..Don't let it get you down.
Posted 6/3/2012 6:00 AM (GMT 0)
Happy Birthday Fairwind....may you have many many more to celebrate.

My husband turns 70 next month....I hope for a time he might be able to say there are no signs of cancer.

Best Wishes,
Kathy

Post Edited (KJ63) : 7/5/2012 4:59:28 PM (GMT-6)

Posted 6/3/2012 6:22 AM (GMT 0)
happy birthday Fairwind!  i sure hope i make it to 70..........

ed

Posted 6/3/2012 11:57 AM (GMT 0)
Suggestions for free cyber schooling:

www.yananow.net
www.prostatepointers.org
www.ustoo.org       (national support groups with local locations)

Get a copy of your pathology report with the details and all the info and others might help you interpret what it means. Best to your decision, it is not a bad idea to get more than one opinion and be part of the decision process.
Posted 6/3/2012 12:19 PM (GMT 0)
Age 47
PSA 8.8
Gleason 4 + 4 (8)

I know the cancer is more aggressive in nature. From what I have read, if I choose radiation treatment first, then I can not have surgery after, But if I went with surgery first then radiation is still an option.

I will be seeing the specialist on Tuesday and hope to bring pen and paper and a few questions and get more definitive answers on the biopsy. I spoke to my Urologist over the phone when I was notified (he did not want to do this, but his next availability would have been 3 weeks later and I did not want to wait that long for results).

So while I got the immediate answers and the process has started for treatment, I am now left to try and learn as much as I can in a limited time (4 - 6 weeks) before I look at treatment options.

I have read that having a Gleason 8 score limits / rules out the idea of surgery, but again is from reading some posts that are 5 yrs old. I am hoping some advancements have been made in that time. My biggest concern I guess right now is if it has migrated to other parts of my body and if so, how badly.

And well wife will not let me talk about poor results from the bone scan etc, she wants positive thoughts unless faced with other realities for now...

cheers
Posted 6/3/2012 12:39 PM (GMT 0)
I am sorry you are here and I know being told you have cancer puts you on an emotional roller coaster. I have similar stats as you. I was 48 when diagnosed over 4 years ago. I was a gleason 8 after surgery. Each person is different. Take it all in, one day at a time.
Posted 6/3/2012 1:46 PM (GMT 0)
Cannuck,

I too am self employed and own my business. I was 61 when diagnosed with G7 3+4 PC and had RALP 8 weeks after the biopsy. I was back at work 3 weeks after surgery which included moving and lifting heavy pure water processing equipment by 4 weeks post surgery. I know of several in here who reported going back to desk jobs at as little as 10 days after surgery. My tumor turned out to be large at 60 % of the prostate but was 100% organ confined. I was also continent by 4 weeks and have been since. You will here many different opinions here on what treatments to seek, but remember there will be only one correct one and that will be the one your choose after consultations and research. I assume you are in Canada and my best advice is to find a URO that specializes in PC and has on staff both surgeons and radiation oncologists so that you can get opinions on both treatments. With your young age and aggressive G8 PC you can not IMO consider watchful waiting as you need to be aggressive in treating the cancer as soon as possible. The other diagnoses testing should not result in any time loss from work other than the time you take to do the tests. If you choose RT for the cancer time off from work will be minimal as well.

Good luck

Terry

Posted 6/3/2012 2:01 PM (GMT 0)
Welcome to the forum...

as you will discover, you have a wide range of options and tons of information available here - having knowledge makes it easier to deal with having cancer..

Take your time and research - you will eventually arrive at a decision that is right for you...

Good Luck!
Posted 6/3/2012 2:19 PM (GMT 0)
Howdy cannuck, sorry you have to be here but you've found a good resource for gathering information.

I faced the same thing at age 55 back in November of '09, my initial diagnosis was G-9 (downgraded to 8+ tertiary 5) had surgery on March 1 2010 and have had undetectable psa since, with my last one on Friday being 0.02.

The decision on which treatment is a tough choice, I opted for open surgery after doing a lot of research, I've been very happy with the results. Lots of conflicting information out there with each practitioner touting his specialty. I was lucky to have a Dr who made appts for me with alternatives to her specialty and insisted that I become educated on all options. Very good advice which I would urge you to adopt.

The main thing I faced was the feeling that G-8 and above was a death sentence,albeit a slow one, granted it's not good but PC is an unpredictable beast and many G-8+ folks are doing well. I'd urge you to take a deep breath and try to relax. I know I about freaked when I found out my surgeon didn't want to do the surgery for over 2 months after the biopsy, turns out having things well healed is a very important part of a successful surgery.

Whichever treatment the skill of the surgeon or the person operating the zapper is paramount, I did LOTS of research online about the available Drs, statistics are not to be trusted, especially if on the Dr's own website. Scholastic history, and patient testimonials (again not on the Dr's website) help. My Dr was young but had a very impressive history.

Kind of long winded, but I just wanted to pass on my experience hoping it may help a bit. Contact info is in the little icons to the left if you have any questions.

Best of luck to you whichever path you choose.
Dave
Posted 6/3/2012 10:19 PM (GMT 0)
Hi Canuck1964:

Very sorry to hear of your diagnosis! I am also a Canadian and I received the same diagnosis last year at this time (Gleason 9 downgraded to a Gleason 8-9 on a second opinion by John Hopkins Medical Institute who offer a second opinion look at your biopsy slides for some $800).

I have spent a year in research and seeking out the opinions of the best doctors I can find in North America. Just some of the lessons I have learned:

- my Canadian specialists are very conservative in treatment and do not accept the treatment options recommended by my US specialists (unless you have unique insurance, the US doctors and therapy they prescribe have to be paid out of your own pocket, although I am advised they are tax deductible). This is not necessarily bad because you have to balance aggressive therapy with quality of life: my point is that you do not have the choice of therapies in Canada that you have in the US;

- a good primer book to read is “Choosing the Right Treatment for Prostate Cancer” by John Hopkins Medicine (you can order and download online this book as well as updates and related pubs – see http://www.johnshopkinshealthalerts.com/special_reports/prostate/special_report/choosing_landing.html

- besides Dr. Walsh, other good reading material are books on Prostate Cancer by Dr. Charles Myers of Virginia and Dr. Mark Scholz of California, both medical oncologists who specialize in Prostate Cancer (particularly Advanced PCa);

- the organization Prostate Cancer Research Institute (www.pcri.org) offers an excellent 2 day Symposium on the latest in Prostate Cancer treatment in September in Marina del Ray, California – see for registration http://www.gifttool.com/registrar/ShowEventDetails?id=1261&Eid=11757

- PAACT Inc. (www.paactusa.org) is an affiliated organization that offers free direct telephone counseling by its President Richard H. Profit, Jr. (not a doctor but well informed) Phone 616 453 1477;

- monitoring this site is an excellent way of picking up on individual experiences and the various therapies being administered in the U.S. and abroad.

Hope this can be of some help to you. I am sure you will receive many other comments from more experienced monitors of this site, but I thought you might appreciate a Canadian’s view.

Houseboy

Posted 6/3/2012 11:50 PM (GMT 0)
Cannuck1964,   I totally understand your situation and how difficult it is to cope with it right now; time is on your side and things will get better.   If I would be you, before selecting the treatment, I would send the biopsy sides to be interpreted by an expert in the field ( I have sent mine to Dr. Jonathan Epstein http://pathology.jhu.edu/department/services/secondopinion.cfm ). The good thing about prostate cancer is that there is variety of treatment options, even for high grade cancer.   Hang in there, get second opinion(s),   analyze your options and comeback with question here, as there are quite a few guys here who will be willing to assist you.   Following link describes what I went through since past Christmas https://www.healingwell.com/community/default.aspx?f=35&m=2383730     My best thoughts and prayers are with you,   Victor
Posted 6/4/2012 12:39 AM (GMT 0)
I too was diagnosed at a 4+4 back in September of 2011, I was 44 and what a shock! It took me a few days to digest it and then lots of reading, talking to anyone I could that had been down the road I was going.

For me complete trust in my Uro, who also was my surgeon was what got me thru it along with my wife and family! I chose surgery and had it done on December 1st... post path report lowered my Gleason to a 4+3 and all is good for now.

I wish the best for you in your decision... this is a great place to be for information and support.

                                             

                                                                                                                                              Jeff

Posted 6/4/2012 3:56 AM (GMT 0)
"I have read that having a Gleason 8 score limits / rules out the idea of surgery, but again is from reading some posts that are 5 yrs old. I am hoping some advancements have been made in that time. My biggest concern I guess right now is if it has migrated to other parts of my body and if so, how badly."

You are still a good candidate for surgery, don't let them tell you otherwise...Over the next couple of weeks, they will run a series of scans and tests to determine (as best they can) whether or not the cancer has metastasized. If these tests are negative, then surgery is still a good option...

In my case, I chose surgery and it failed, my PSA hung at 0.9 eight weeks post surgery. I was angry, my surgery had serious complications that put me back in the hospital for a week and it was ineffective! I sought an outside opinion, a respected PC researcher who told me "No, it was NOT a waste! Your surgery removed 98-99% percent of your cancer. Now the salvage treatment only has to deal with that very small percentage that remains, giving you a better chance than if you had not had the surgery". Was he right? only time will tell, but so far, so good....
Posted 6/4/2012 2:24 PM (GMT 0)

Cannuck1964 said...
Hello Cannuck1964,

Sorry we had to meet this way, but you couldn't have come to a better place. This place was my savior when I was DXed over a year ago today. Ask me any question you want and I can also give my email address if you don't want to post here. Good luck, help is not far away!

Foxrun

cannuck1964 said...
Hi all,

I recently was given the news of having prostate cancer (4 days ago). I was told I have a Gleason score of 4 + 4.

I see the specialist in a couple days. I am so confused recently on where to get information, I have ordered the book from Dr Walsh and will read it, I want to become informed and hopefully count myself as a fighter to beat this.

Other information would be great, I guess I have been reading some here and felt I show post and hopefully gain from others experience and knowledge on the matter.


cheers and thanks

Posted 6/4/2012 5:22 PM (GMT 0)
Cannuck1964,

Sorry you have to join us, but you will find a lot of good people on this forum, tons of information, and some genuine insight.  I am less knowledgable than many of the members, but I have the redeeming virtue of being one of the few Americans who know the lyrics to "Oh Canada," being an upstate New York hockey fan.  You are correct that a Gleason 8 is a more difficult thing, but it is not the only factor.  If you consider surgery, do not let the surgeons downplay ED -- it is a big problem for a majority of the men who elect surgery.  Incontinence seems to be a much lesser problem. With a Gleason 8, it is what happens AFTER surgery that tells the tale.  There is a valuable chart out of Johns Hopkins at: http://urology.jhu.edu/highlights/10.php  This looks at patient prognosis after surgery based on three variables (Gleason score, time to rising PSA after surgery, PSA velocity after surgery-- doubling time).  The last two cannot be known until after surgery, and hopefully they do not happen at all in your case.  The point I am making, I suppose, is that no matter how well informed you become, you cannot know what will happen a few years out.  (As it happens I am on the wrong side of the chart.)  You have a decision tree before you, and you can get lots of input and draw on lots of experience here.  But not everything can be known. And surgeons, in my view,  are not particularly helpful about what happens after surgery. Best wishes.

Newspaper Lover

Age 68

DaVinci surgery 11/09. Clean margins, clean seminal vessels. No incontinence.

Rising PSA noted 06/11

Gleason 8

Time to recurrrence 18 months

Three month doubling time (summer 2011).

PSA rose from .07 on 06/11 to .17 on 11/11.

MRIs and bone scans negative so far.

Started Lupron/Casodex 12/11

Began IMRT 02/20/12.

Finished IMRT 04/16/12

Follow up in July, 2012.

 

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