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48 years old HELP!

lab1269
Posts: 1
Joined: Mar 2012

age 48, PSA of 10, Gleason of 6, T1N0M0 (cancer in 1 of 12 biopsies Sept 2011 ).Follow up bone scans and MRI negative: November 2011.
Initially met with a respected radiologist November 2011, who suggested that an active watchful waiting is an option. Respected surgeon does not feel watchful waiting is an option and is pushing for surgery due to age and PSA has scheduled radical robotic prostatectomy for next month (April).

Not sure if the potential side effects of surgery are worth it at this point.
Planning on going to CTCA next month for an "out of the box" second opinion.

Any feedback on the different points of view?
Thanks

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

what is the involvement of the core that is positive, what percent cancer?

what is the size of your prostate, need to calculate psa density <0.15 ng/ml/g

what are the data points for your psa...rate of rise? Is your PSA now exzctly 10?

Choice of active surveillance is not age related.(In fact where I am treated there is a man who is 35)

NCCN guidelines recommends active surveillance among other treatments for those with t1-t2, gleason score equal or less than 6, psa <10ng/ml who expect to live 10 or more years

PS I hope that you had a second opinion of your biopsy by an world class expert, so you are not under or over treated.....this is very , very very important.

pps I cannot tell you what is best for you, but I can share whatever information that I have so you can make a "best" decision

Swingshiftworker
Posts: 616
Joined: Mar 2010

I suggest that you listen to your radiologist and follow your instinct NOT to get surgery at this point.

I recently posted a lengthy response to another new member who already seems predisposed to surgery to treat his early stage cancer -- very similar to yours.

Rather than rehash what I said there, I'm just going to quote my response and refer you to the entire thread so that you can see my response in context:

http://csn.cancer.org/node/236958

My comments there (below) are equally applicable to you; the only difference being that you seem more likely to heed my advice than the other member.

---------------------------------------

March 9, 2012 - 8:36pm
Only Considering Surgery?
From the way you couch your questions, it seems like you're just considering surgery. Is ths correct? If so, you need to reconsider.

You have a low grade early stage cancer which is amenable to treatment w/radiation with an equal likelihood of success and with much less risk of ED, incontinence and other side effects. Your cancer is also early enough that you really don't need to worry about cancer migration, nor should you need an MRT, CAT, bone scane or ultrasound in order to determine if the cancer has spread yet.

I'm a pretty outspoken opponent of using surgery to treat prostate cancer and, if you want the straight dope on the risks of surgery (not just what your urologist/surgeon tells you), then read this article, which was written by a doctor.

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

Don't be surprised if the information provided differs dramatically from what your urologist/surgeon has told you. He's not necessarily "lying" to you but each specialist pushes his specialty and is naturally inclined (biased?) to minimize the risks and accentuate the benefits of the methods s/he uses.

With surgery, it's always crap shoot. Lots of guys here have reported no problems and only limited disability caused by ED and incontinence. On the other hand, there are lots of other guys who have told us some real horror stories of long term and incurable ED and incontinence which required the use of penile implants and artificial urinary sphincters, which sometimes caused even more problems.

BTW, there was a recent thread which reported and commented on the experience of a doctor who chose surgery for his prostate cancer but "if he had to do it over again" would have gone w/active surveillance instead -- which is obviously a choice available to you too. See: http://csn.cancer.org/node/236334. Here's what the doctor/patient had to say in conclusion:

"Where am I now on the PSA dilemma in light of the recent US Preventive Services Task Force recommendations? It is clear that prostatectomy results in a very high chance of 20-year prostate cancer–specific survival, but even when the procedure is performed by an expert urologist, it can also result in significant rates of sexual, bladder, and bowel dysfunction and other less common adverse effects, such as my weakness. Active surveillance with longitudinal PSA tests and physical examination is associated with very low rates of bowel, bladder, and sexual dysfunction and has a high probability of correctly identifying when to move from surveillance to treatment.

If I could do it all over again, I would not undergo the surgery; instead, I would opt for active surveillance. Even the most informed patient (me in this case) has difficulty making a truly informed decision."

If you aren't comfortable w/the idea of "doing nothing", the obvious other choice is radiation and, if you choose radiation, there should be no need to be out of work for 8-10 weeks as you would for surgery.

The best of the currently available methods of radiation treatment for early stage cancer patients is CyberKnife. It offers the most advanced and precise method of radiation delivery which accounts for both organ and body movement during treatment with minimal side effects. Treatment only takes 4-5 days outpatient treatment and no need to lose time from work. I and a number of members here have received this treatment with good results. Low Dose Rate Brachytherapy is often recommended for men w/early stage PCa, but I'm not a big fan of it because of the imprecision involved in the use of seeds. If you go w/BT, the better method is High Dose Rate BT which involved the temporary placement of strings of seeds that are removed after treatment. I believe that down time for HDR BT is just a couple of days in the hospital and maybe a total week of recovery time. Proton Beam Therapy is also a good method of treatment but it requires 28-40 daily treatments and you have to live or move near to a treatment center. So, that might not work for you.

In any event, I suggest you check out all of these alternate methods of treatment and compare them with the risks/benefits of surgery and, if you do, I think you'll conclude (as other here already have) that surgery is NOT necessarily the best way to proceed.

Good luck!

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Thank you Swing, Second opinion!! ED ****! I'm living that nightmare!

Beau2
Posts: 228
Joined: Sep 2010

I wouldn't do any kind of treatment if I felt pushed and I didn't think I had a medical emergency. With the numbers you presented it does not appear that you have an emergency and that you probably have time to reconsider.

If you haven't done so, I would suggest you research your options ... starting with AS.
To me it makes the most sense to start with AS if your numbers are right and if you think you can stick with the AS program.

If you decide you can't do AS then you can always do treatment. If you haven't done so, you might want to read Dr. Patrick Walsh's book on Prostate Cancer (he's pro-surgery; however, he does have good sections on other treatments).

Just my opinion ... good luck with your fight against PCa.

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Lab

You have gotten good opinions from the survivors above. I would add that watchful waiting WW is different from the more regimens oriented AS. I would like to know what would be the “respected surgeon” ‘s opinion if you would suggest him to follow AS.
You are too young to lose your quality of life for an earlier treatment particularly with such low risk stats.

If indeed all the info you are sharing is true (or validated through second opinions given by experts at specialized facilities) you got enough time to educate yourself in the matters of PCa and consider other aspects of your life style. Though I am not sure about the benefits from a CTCA consultation, I would recommend you a consultation with a medical oncologist specialized in prostate cancer. Just avoid any one that could be biased in their opinions.

You will do fine as we all are doing. PCa positive diagnosis does not imply a death sentence.

Welcome to the board.

Vgama

Cpmont
Posts: 13
Joined: Sep 2011

I understand your concerns, sorry you are here, and I want to share my short journey with you, I hope you are not offended. I have a very similar diagnosis in September 11, MRI CT etc, and at this stage in the game I am choosing to use active surveillance. Approximately 6 months in I have greatly modified my diet, lost 30 lbs, added a light exercise program to my routine and reduced my triglycerides etc to normal from extremely high levels, my PSA has gone from 9.3 to 5.4 over the same period. (Repeat of what I posted on March 3, 2012). There are a couple of other things I did not mention in my previous post you may have noticed as well, my vitamin D3, B12, and testosterone were all on the low side on my first blood test with the high PSA, they have also move to a normal range still a little on the low side so I am working to get those up and see if there is any effect. I plan to have another biopsy in September or October.
But I still have those moments that I think I should have a more conventional treatment, especially when friends and family voice their concerns, (the doctors concerns are more marketing as far as I’m concerned).

Timlong
Posts: 34
Joined: Nov 2011

Through the PCa journey I've had with my best friend Tim I have learned the they will try like heck to sell you their services. That is why you must get many opinions and do alot of research and become educated in your new intrest which has been forced upon you. Should you decide on surgery and without knowing your Endorectal MRI findings yet (very important) I would like to suggest a surgeon that has at least 500 Robotic assisted RP's and that specializes in cystectomy. These guys or girls can do "great bladder necks" and that my friend is critical in a faster recovery of uninary control. I've read some true horror stories about post-op problems which I feel are directly related to the Surgeon.
As far as ED... If nerve sparing RP is what you get....with some meds and penile therapy...you'll get it back.

Good luck my friend,

Jeff

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