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Scared!!! Just found out I have Prostate cancer

mark b
Posts: 6
Joined: Nov 2012

Hi, My name is Mark. My wife and I were told Tuesday 10-30-2012 I have prostate cancer. I am 48 years old, and have 4 beautiful girls. This Is what I know. My gleason score is 3+3=6. My PSA was a 0.37,( that's right not 3.7 ). My doctor said he felt a hard spot on my prostate during the physical exam and ordered a biopsy. My stage is a T2a. I am scared to death I wont be able to walk my girls down the isle or see my grand kids. I have been doing a lot of research on the internet. I live in Louisiana and WILL be getting a 2nd and possible 3rd opinion. One will be MD Anderson. I am leaning towards the seed implant with radiation. The other place I have talked to is RCOG (Radiotherapy Clinics of Georgia). Has anyone used RCOG or have anything about them. Thanks, Mark

hopeful and opt...
Posts: 1330
Joined: Apr 2009

I am sorry to read that you have joined this club that no one wants to be a member of.

First of all, take a deep breath. It is very possible that you may have an indolent cancer, that is not likely to grow. By definition many men with gleason 6's do not have aggressive cancer.

In order to give you better feed back, some more information is needed from you.

How many cores were taken in your biopsy?
How many of those cores were positive?
What was the involvement of each core that was positive, that is what percent of the core is cancerous?
Do you have a history of the PSA's that you have had?
Have you had any other diagnostic tests?

It is important that you have hard copies of all paper work pertaining to this issue, so you can reference , and bring to other docs, for consultations in various specialties.

This is very, very important.....YOU NEED TO GET A SECOND OPINION ON YOUR BIOPSY SLIDES BY A WORLD CLASS PATHOLOGIST WHO SPECIALIZES IN PROSTATE CANCER. Determining the gleason scores are subjective, and the run of the mill pathologist may or may not be accurate. This is very important for those diagnosed with low aggressive disease. You do not want to be under or over treated.

It great that you have come to this site. You will get good information. Also attend local support group(s) for face to face contacts. Read books, research the internet, and research, research and research...Basically this is a slow growing disease, and you have time to do this research...

Is there a history of PCa from others in your family. It is a good idea to alert other members, so that they can be tested, since there is a higher likelihood that they can have this disease. Also, there is some correlation to breast cancer among certain populations.

Life style change........many of us here at this site have made life style changes, and are eating hearth healthy. We are more likely to die from heart disease than from PCa. By the way those who have been diagnosed with PCa generally live longer than the average population, since we are more conscious of the benefits of life style. I for one eat almost a veggie diet and exercise regularly.

We at this site are here for you.

mark b
Posts: 6
Joined: Nov 2012

Thank all of you for your advice and support. I have had my PSA checked every year for the past 7 years due to having a cyst on my kidney. My doctor has me do an ultrasound ounce a year on my kidney to make sure it hasn't grown, and does a PSA the same time along with a digital rectal exam. My PSA over the past 7 years has never been over 1.0. My pathology report says there were 12 samples taken with 1 core (the right base) having a Gleason score of 6 (3+3), tumor size 7mm, 45% of length of core. Core's b,c,d,e,and f had no cancer.

Because of my age, I don't think I want to do active survalance or the radical or robotic procedure. I tend to be a data type person. I like to see the numbers, but a lot of places don't track there patient's with cure rates and side effects of different procedure done.

IS cyberknife a fairly new procedure? Is there a 10 year study on this technique? It's just all overwhelming. I just want to find my best chance at my age to live another 20 years or so. Please, I value every bit of info and advice I can get.

Thank God for my brother in law. His is a doctor (GP) and is helping me by talking to his doctor buddy's and doing research. I think we are going to start off by going to MD Anderson for a second opinion.

Thank all of you so much for the time you have spent in responding to my post.

hopeful and opt...
Posts: 1330
Joined: Apr 2009

So as things stand now, you are young and have a low volume, low aggressive disease, and all the doctors want you as a patient because the chances of success is high with all the treatments.

You are a candidate for Active Surveillance. Johns Hopkins defines qualifying patients to their AS program as psa less than 10, less than 2 cores positive with less than 50 percent involvement.

Here is a video that Dr. Snuffy Myers, a very prominent medical oncologist, probably the best in the world, has to say about this AS treatment for young men.

http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuKrAZKXonjHpfsX67eQpWLHr08Yy0EZ5VunJEUWy2YIHRNQhcOuuEwcWGog80B5XCfSUaIVG9edIBg%3D%3D

Generally when we are diagnosed, our first thought is to get the "cancer" out, and there is a lot of overtretment that is done with lots of side effects. As a man, older than you, who has decided to have Active Surveillance as a treatment, I have listed various information at my "about me". Simply click my name to read this. ...Basically, I believe that if my PCa does grow I will be able to treat in the same way that I initially would have, but during this time new methods of treatment will be available, and I will be side effect free during the time of AS. I am also hopeful that I will never need active treatment since about 70 percent of low risk cancer are indolent and do not progress.

Mark.......again, let me emphasis, get an expert second opinion on the pathology by having your slides sent to an expert pathologist.

Trew
Posts: 892
Joined: Jan 2010

Most PC cases turn out ok.

You are early. You have lots of room to nurture a positive hopeful outlook.

Swingshiftworker
Posts: 634
Joined: Mar 2010

Sorry to hear about your diagnosis but glad that you're not immediately thinking about doing surgery.

T2a (detected via DRE but still contained w/in 1/2 or less of the prostate) is still an early form of prostate cancer (PCa) and the Gleason 6 confirms it. Your PSA score is unusual but just points out how unreliable PSA is in detecting PCa.

All of us here who have been diagnosed w/PCa were in exactly the same situation. It's understandable to be scared and uncertain about your prospects but now that you are aware of your PCa and are in a position to treat it, you are more likely to die of something else other than PCa. So, I suggest that take the time you have now to fully investigate your options. Doing so will give you a greater sense of "control" over your cancer and confidence that there will be a means to, if not cure it, at least keep it in check.

As for the method of treatment, I not sure why you think you need LDR (low dose rate) brachytherapy (BT)-- seeds -- AND external beam radiation (I assume, IMRT -- intensity modulated radiation therapy) in addition to LDR BT. I know that it's a protocol followed by some clinics/hospitals but I think it's overkill. Better to go w/LDR BT 1st and then use followup IMRT if there's an indication that the LDR BT has failed.

I'd suggest you look into HDR (high dose rate) BT as an alternative to LDR BT. The down side of LDR BT is that the seeds are permanently placed in your prostate and that you remain "radioactive" for at least a year (the 1/2 life of the seeds) which can cause you problems in interacting w/pregnant women & children and going through security at the airport. HDR BT places higher dose seeds in a chains in various locations temporarily in your prostate, so that you won't have to deal w/the passing/movement of seeds and radioactivity as you would w/LDR BT. However, both HDR and LDR BT suffer from the possibility of collateral tissue damage due to improper placement or patterning of the seeds due to human error, which can result in ED, incontinence and damage to the bladder, rectum and/or urethra.

The better choice, if you're willing to consider it, is SBRT -- stereotactic body radiation therapy. The main method of SBRT currently in use is CyberKnife (CK). CK is modeled after HDR BT but is better than HDR BT and other methods of radiation delivery because it is the most accurate. The computer program which controls the arm that delivers the radiation is accurate to the sub-mm level (which exceeds the accuracy possible by any other method of radiation as well as surgery) and can adjust for both body AND organ movement during treatment. I and a few other men here w/early stage PCa have received CK w/apparent success and few if any side effects and absolutely NO ED or incontinence.

You're a young man and I'd think you'd be interested in finding the method of treatment that has the greatest possibility of killing the cancer while still maintaining your quality of life -- most notably avoiding ED and incontinence. Not being able to have sex and having to wear diapers FOR LIFE is NOT something any man looks forward to but that is a definite possibility w/surgery. CK offers the greatest probability of avoiding this. LDR and HDR BT are IMHO second best and IMRT should be considered only if those methods fail or if you have a more advanced stage of cancer than your diagnosis suggests.

Don't simply rely on what I, your doctors or anyone else tells you. Do your own research and make your own decisions about how you want to treat your cancer. This will give you the greatest opportunity for success and control over the results that follow.

Good luck!

mark b
Posts: 6
Joined: Nov 2012

Because of my age, I don't think I want to do active survalance or the radical or robotic procedure. I tend to be a data type person. I like to see the numbers, but a lot of places don't track there patient's with cure rates and side effects of different procedure done.

IS cyberknife a fairly new procedure? Is there a 10 year study on this technique? It's just all overwhelming. I just want to find my best chance at my age to live another 20 years or so. Please, I value every bit of info and advice I can get.

Thanks, Mark

Swingshiftworker
Posts: 634
Joined: Mar 2010

CK is a fairly new procedure which has been around of just about 10 years.

There are no 10 year studies yet, just 5, but the results for those are excellent and the procedure is becoming more widely available in hospitals and private cancer treatment clinics.

Here's the best study in CK to date which was published in 2010:
http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

And, here's a video presentation by a Dr. Fuller, who uses CK in his clinic in San Diego, which compares CK with other treatments:
http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

And, here's a link to the CK Patient Forum sponsored by the mfgr Accuray where you can find comments posted by Dr. Fuller and other physicians, as well as many CK patients themselves:

http://cyberknife.com/forum.aspx?g=topics&f=2586

If you go to the main page at cyberknife.com, you can also find out all of the general info that the mfgr has to offer on the development and use of CK.

Feel free to ask any more q's about CK once you've reviewed this material.

Ciao!

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

I don't blame you for being scared. I think most of us who are members of the club were either scared, upset or really pissed off when we found out we had this little visitor. I was 54, had a
Gleason of 4 + 3, and PSA above 20. In my case I chose RP, and am now 63 and still going strong.

Best I can say is take your time to decide on your course of action, and once you start on it,
don't second guess yourself. A positive attitude is one of the best things in this skirmish. You
are on this problem early, and will find plenty of people here to talk to.

If you are going to worry, I think it is best to worry about paying for the 4 weddings that you
will get to go to in the future.

Best to you.

dr

T Paul
Posts: 12
Joined: Nov 2012

Mark,
Got the call the same day as you. I am 52.

I will also be looking at RCOG and the treatment called ProstRcision. I will be starting the 2nd and 3rd decision process this week.

Good luck. Please post your findings and opinions about MD Anderson and RCOG. I will post my insight as well.

T

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

Mark

You got excellent responses from the above survivors. I advice you for not committing to any treatment if not totally knowledgeable of what it entails. The info you shared is not enough to reach to a proper decision.
Be aware that doctors are biased when recommending a sort of therapy. Typically they follow the principles/regulations of the clinic/hospital where they work or recommend the treatment of their trade (urologists like to cut, radiologists like to radiate).

We all had gone through that scared initial moment when found with cancer. Our wives get scared too and it is difficult to understand details of what is going on. We need to be “cool” and not to rush.

Your scores of a Gleason 6 and PSA 0.37 (if verified as true data) are for a very very very very low aggressive case of prostate cancer.
You need to get those results re-analysed firstly, and should read about prostate cancer, the meaning of diagnoses, treatments and their risks and side effects.
It is not unusual to receive suggestions from doctors to undergo radicals (RP and RT) when a young patient is diagnosed but guys like you got lot to lose in terms of quality of life.

I wonder if the biopsy was recommended solo on the positive digital rectum examination (DRE).
Have you done any image study?
Where were the cores analysed? Is it a reliable laboratory dedicated to PCa cases?

Getting second opinions from various doctors specialists in each field is proper. Independent medical oncologists are the most unbiased guys.
You need to prepare a list of questions so that you are prepared to understand what they say. Here is a link that may help you to deciphering your own list;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
Here you got several links that may help you understanding things;

A compendium on Prostate cancer and care;
http://www.lef.org/protocols/prtcl-138.shtml
“A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.

A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.

As Hopeful suggest above, your cancer could be sort of indolent and you may even not need a treatment so earlier. Active Surveillance (AS) is a way to control the disease without incurring loss to cure. This is most recommended to guys with your diagnosis but you need to recheck those results and consult with specialists.

I wish you a good ride in our boat. Hope for the best.

Welcome to our club.

VGama

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Take your time and research all of the treatment options. The PSA score can be misleading.

Mine was at .8 and jumped to a 1.25, I seen the urologist, psa jumped to a 2.25, biopsy came back with cancer. Long story short surgery final path report stage T2C gleason of 3+4 = 7. Final psa of 3.95

The one thing to be thankfull about is that this was caught in an early stage. There are a number of options available here for treatment.

This cancer does need to watched and treated. I am sorry that you had to join the brotherhood that no man wants to be in.

The other members have given you good advice.

One bit of advice, donot let a treatment method be pushed on you. If you are uncertain get the second opinion.

It might be a good idea to have your wife with you at the doctor visits, mine has helped in keeping information correct

Hang in there, I have 5 daughters, I was 61 when diagnosed 2 years ago. One of them was married 5 months after I had the robotic surgery.

Kurt

prezmic
Posts: 36
Joined: Jul 2011

Hi Mark. I'm from Mississippi - welcome brother.

Here are a couple of sites for information that might interest you. I had IMRT and BT and have no complaints.

http://www.prostatecancertreatmentcenter.com/ProstateCancer/ProstateCancerResultsStudyGroup.aspx

http://www.prostate-cancer.com/index.html

One thing I might note about an earlier post that states that with low dose brachytherapy you will remain radioactive for 1 year and have problems with travel and such. That is not necessarily true for all cases. There are different isotopes that can be used in the procedure. Shorter half lifes result in shorter time that you have restrictions.

http://medicalphysicsweb.org/cws/article/newsfeed/46317

Good luck to you.

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