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Age 50 and recently diagnosed

RTS
Posts: 6
Joined: Jun 2012

I was diagnosed with a Gleason score of 6 and a psa of 5.2 with cancer in 1 out of ten biopsies. Also inflammation.
This will be a great site for my journey.
I know this is a "good" report but my first and main action is to confirm the pathology report and next to see if the cancer has somehow moved to another area without detection. My urologist has suggested that I wait three months a revisit the psa. It has been 6 weeks and I am still having burning and multi peeing times from inflammation. I am taking my second round of antibiotics. I am paranoid now and every ache gets my attention. To be honest I really dont feel right from my waist to my knees. Achy.
My question is should I be patient annd wait for the second psa in 6 more weeks or should I be doing something more active like confirming the pathology report?
Thanks to all my new friends and I unfortunately look forward to getting to know you.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

With the diagnosis there is always fear of the 'C' word cancer. Believe me I KNOW ITS NOT EASY but try to not worry about.

A gleason 6 is easily treatable with many options.

My own father was a Gleason 6 and treated back in 1997 and is doing fine today!
I'm gleason 7 and diagnosed 3 years ago. My 3rd anniversary of post surgery treatment will be in August.

Contiue your antibiotics. It never hurts to get a second opinion.

Have you read any of the books yet?

Dr. Patrick Walsh has an excellent book called Guide to Surviving Prostate cancer. You can get it from amazon. Very informative book in laymans terms. There are other books also.

Keep us posted!

lewvino

hopeful and opt...
Posts: 1335
Joined: Apr 2009

http://csn.cancer.org/node/241068

yes you need to get a second opinion on the biopsy from an expert so you are not under or over treated.

.

the psa is an indicator only of prostate cancer while the biopsy results is what you need to focus on, not the psa unless there is another reason since you are experiencing difficulty from the biopsy.

questions for you

what is the involvement of the core that was positive, that is what is the percent cancer.

what is the size of your prostate

yes you need to attend support groups , research and visit first a doctor that specializes in active surveillance if you meet the qualifications of active surveillance, that is to include less than 50 percent involvment of the cancer and less than 0.15 prostate density...or something close to that.

VascodaGama's picture
VascodaGama
Posts: 1573
Joined: Nov 2010

RTS

Welcome to our boat.

You surely can expect helpful comments from survivors in this forum. Just scroll along the threads and you will get ideas of what our disease is about.
Hope you find the answers but expose them if still unconvinced.
In my layman opinion you can and should wait for the next PSA results. Do your researches and get proper diagnoses with real results from tests and from second opinions.

Wishing you a smooth ride.

VGama

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

You have started on a journey. Right now there is confuion and a lot of questions. The PSA scores can be misleading at times. My PSA score was 2.25, my gleason score was the bad 7 and all 18 biop samples had between 40 to 60 percent cancer cells. I know that the waiting can be very hard. Watch your PSA level, but from your posting it looks like a second opinion might not be a bad idea. The one thing to keep in mind is that this is cancer and it needs to be treated. Above all start doing research on the treatment options. In my case I opted for surgery this was due to the agressive type of cancer that I am fighting. My PSA score now is at a 0.02. I spoke to my doctor about this and asked, if the Prostate is removed, then where is the PSA comming from?? The best thing to do right now is to keep up with your doctor visits and pay close attention to the details. It helps to have another person with you during the visits. My wife is very good with the small details that I miss. There is nothing wrong with a second opinion. Start doing as much research as possible on this, it helps to clear up some of the questions and confusion. This has been a intense ride for myself. I had the robotic surgery in Feb of 2011 and have been getting PSA tests and doctor visits every six weeks. Please come back to the forum, this has been a good place for information. Several members have already helped me.

RTS
Posts: 6
Joined: Jun 2012

I saw a thread below that recommended a second opinion of the pathology report from Johns Hopkins. My question is what information do I need to send and who should I contact for that, the Urologist or pathologist?

Swingshiftworker
Posts: 637
Joined: Mar 2010

To get a 2nd opinion at Johns Hopkins, read the following links and follow the instructions there:

http://www.hopkinsmedicine.org/international/patients/second_opinions.html

http://pathology.jhu.edu/department/services/consults/urologic.cfm

I had my 2nd opinion done by Dr. Jonathan Epstein at Johns Hopkins. He's considered one of the pre-eminent experts in PCa assessment. You can ask that he do yours. The cost to me was about $170 (a couple of years ago). That cost may or may not be covered by your medical insurance; ask them to find out.

Where you get your slides depends on who did your biopsy. Generally, it will be the lab at the hospital or medical center where the tissue was gathered. That's not your urologist but he may need to "approve" the release. That wasn't required in my case. I just went to the lab (Kaiser, in my case) and picked them up. I didn't trust them to send them to Johns Hopkins. I wanted the slides in my possession (in fact, I still have them) and I wanted to send them myself but others have had their lab/urologist do it for them.

Either option should be available to you. After you read the links on sending your slides to Johns Hopkins, just decide how you'd rather proceed.

Good luck!

RTS
Posts: 6
Joined: Jun 2012

The core involvement was 5% in 1 core out of ten. My prostate was not enlarged but I don't know the actual size. Ill check the report. Finding a doctor who specializes in "active surveillance" is great advice.
Thanks

hopeful and opt...
Posts: 1335
Joined: Apr 2009

You appear to be a prime candidate for "active surveillance with delayed treatment if necessary"

Please make sure that you get a seoond opinon of your pathology by an expert pathologist.

Have copies of all your medical records available to answer any questions, and to present for copying to any medical professional you might visit.

I was diagnosed march 2009, and having been on active surveillance since that time...feel free to click my name to see what I have been doing, and to read various study information. After you read the summary of my case, feel free to ask questions.

rch
Posts: 79
Joined: Nov 2011

RTS
Visit the following URL which gives all the instructions and the costs of a second opinion at Johns Hopkins. Turn around time is about 48 hrs. Either Jonathan Epstein or Netto would read the biopsy.

http://pathology.jhu.edu/department/PDF/patientwslidesConsultreq2012.pdf

Swingshiftworker
Posts: 637
Joined: Mar 2010

While waiting for your 2nd opinion results to come in and while waiting another 3 months to get a follow up PSA test result, you really need to start to do your research on the treatments available for early stage prostate cancer (PCa).

There are books out there BUT all of the info you need is available on the NET. I'm surprised (and happy) that your urologist didn't immediately steer you to surgery (open or robotic). Surgery is an option chosen by many men BUT it is NOT my favorite. In order to fully understand the risks of surgery, you should read the following article:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

Other than surgery, you can opt for active surveillance or some form of external beam radiation therapy (EBRT), including but not limited to the following:

IMRT (intensity modulated radiation therapy)
IGRT (image guided radiation therapy)
3DCRT (3D conformal radiation therapy)
PBT (proton beam therapy)
SBRT (stereotactic body radiation therapy)

There are also 2 forms of "internal" radiation therapy commonly in use:

LDR BT (low dose rate brachytherapy)
HDR BT (high dose rate brachytherapy)

Both involve the physical placement of radiation inside the prostate. Radiation seeds are used in LDR BT which stay in there permanently. Strings of seeds are placed and later removed w/HDR BT. Between the 2, I prefer HDR BT and you should do the reading to decide which you'd prefer if you decide to go w/either.

These are the main radiation treatments currently available and discussed on the Net for use w/PCa. There have been significant advances in the application of radiation treatment recently and IMHO the best currently available for the treatment of early stage PCa is CyberKnife (CK) a form of SBRT. To get a general overview of CK, please take a look at the following video:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

The speaker in the video is a Dr. Fuller from San Diego who uses CK and other radiation techniques in the treatment of PCa. The video mentions and compares CK w/other radiation methodologies mentioned above. The video will probably generate more questions than answers for you but it will give you a good foundation upon which to base your research on the types of radiation treatments available for PCa.

In addition to radiation, there's also:

HIFU (high intensity focused ultrasound)
Cyro (cyrosurgery)

HIFU is still considered experimental by medical insurers, has not been approved by the FDA and is not available in the US. So, you'd have to travel out of the country andpay for it yourself, if you want to go w/HIFU. Cyro can be (but is not commonly) used for PCa and comes with significant ED risk if not administered properly. I do not recommend it but you should read about it and decide for yourself if it something you want to consider or not.

Once you've brought yourself up to speed on the treatments available (including their effectiveness and risks), you'll be in a better position to decide which treatment is "best" for you after you get your 2nd opinion and next PSA test results back.

Good luck!

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