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Update and would like opinions

mark b
Posts: 6
Joined: Nov 2012

Hi again, 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. I since have had a 2nd opinion on 11-27-2012 at MD Anderson. They confirmed the biopsy to be correct. After meeting with a team of doctors, (who took there time talking with us) they have suggested for me to do the robotic surgery because of my age and good health. The surgeon is Dr. John W. Davis and has over 1500 surgery's under his belt. he told me that he could do the nerve sparing technique. My question to you all is has anyone used this doctor at MD Anderson and how has you outcome been.... Thanks so much, Mark

hopeful and opt...
Posts: 1332
Joined: Apr 2009

Here is the thread that you previously posted, for any who might wish to read it.

http://csn.cancer.org/node/249453

I wonder, what is Dr. Davis surgical margin?

Does Dr. Davis keep a record of the outcomes of his patients?

What percent have ED

What percent have incontinance?

What percent of his patients have positive margins? What will he do if there is positive margin?

etc, etc.

................

Mark , Have you had any other diagnostic tests, ie MRI using a tesla 3.0 machine which will show if there is extracapsular extention (which is unlikely, but worth checking)

The Active Surveillance protocol is not age dependent. If you have AS you can still have the exact treatment such as surgery as you have selected.

By the way have you you investigated SBRT (cyberknife)?

tarhoosier
Posts: 182
Joined: Aug 2006

Mark, sorry for the reason for you to be here. I am unsure about the recommendation from the doctor(s). You certainly should have had surveillance as a prime option. If the doctors did not suggest it then why not. If you have rejected that choice, then radiation would be another less invasive option with fewer side effects. Was this offered/suggested? Did rthe doctors say you have the most indolent and least threatening tumor possible?
You have loads of time to decide. A hasty decision in your case will nurture regret. Seek options from a medical oncologist who does not provide primary treatment and can be objective in suggestions. Seek a local prostate support group. Talk to survivors.

Old-timer's picture
Old-timer
Posts: 114
Joined: Apr 2011

I am not familiar with Dr. Davis. However, with your numbers, it is my opinion that you should not rush. Study the subject of prostate cancer and treatment options. Wait three months or longer and check the progress of the cancer again before you act. You are too young to risk undesireable side effects unless it's absolutely necessary. That is what I think; however, I stress that I am not an expert although I have lived with and studied prostate cancer for 21 and one-half years.

Another bit of advise. Prostate cancer is not a pleasant thing with which to deal. But it is not as scary as it first seems. Especially with your very low numbers, it would be best if you take a deep breath, relax, and don't be too hasty in deciding what to do.

Hope this is helpful. Good luck to you and your family.

Jerry

ralph.townsend1's picture
ralph.townsend1
Posts: 353
Joined: Feb 2012

I sorry for your condition and I agree with old-timer. The 3+3 is not a reason to remove Prostate, but saying that I would go with caution. I so think that MDACC would not think you should remove the prostate without reason??? I have been go to MDACC for 3 year's and they have not led me wrong!!!

So in saying that you are about to make life changing decision. You should take a little time before that step and MDACC is the best!

God bless you and your wife.

caseyh
Posts: 63
Joined: May 2002

Mark

I agree that you should take a deep breath & relax. It is early and you have time to investigate the best treatment. My best guess is that the doctors at MD Anderson are concerned about your young age and low PSA. Both of these indicators are often present with extremely aggressive disease that could be difficult to monitor. Just a guess, but at any rate your disease is somewhat unique. I would get a 2nd & possibly 3rd opinion from oncologists who specialize in PCa before making your decision. Preferably from doctors outside of MD Anderson. Make sure that you completely understand your diagnosis and the consequences of various treatment options.

Good Luck!

BXGSXP
Posts: 3
Joined: Jul 2012

Dear Mark,

I am sorry to hear about your situation. I have a friend that is 61 and diagnosed with a 3+3 score and a higher PSA (around 8) and due to his age, it was suggested that he get treated vs. watchful waiting (per Dr. Ballantine Carter at Hopkins). He was diagnosed in late 2011 and had surgery (Dr. Allaf at Johns Hopkins in Baltimore) in late August. In between diagnosis and surgery, however, we spent extensive time talking to other doctors and looking at other options, i.e., radiation, cyberknife, seeds, cyro, and also reading. The insights from reading were probably of most help in making the final decision on what to do and here are a few suggestions: "The Decision, Your Prostate Biopsy Shows Cancer, Now What"...author is Dr. John C. McHugh. Next is "Saving Your Sex Life", authored by John P. Mulhall, M.D. and the other is "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer", third edition. I believe you have time to do a good bit of research before deciding what your next step will be. Prostate cancer, unlike most other cancers, is known to progress slower, so that's the good thing for this disease.

I will say that my friend was operated on day one and released day two. He did very well in recovery, really no bladder control issues. The thing now is erectile problems and he is going to a doctor who specializes in penile rehab. It can take quite a bit of time to get things working again as they were. Your young age, however, is a plus in that situation should you decide on surgery.

Insofar as surgeons, if you choose to elect surgery, we selected a surgeon who focuses most all of his time on patients that have elected robotic surgery. He's in the OR 4 times/week and does 2-3 patients a day, so he has perfected the technique. We did speak with a surgeon as well who operated a few times/month and felt much more comfortable with the doctor who made his living in the OR doing the procedure repeated times. We were both pleased with the post-op outcome and knew what to expect afterwards.

Again, please take time to research so you are comfortable as you can be with your decision moving forward. Best of luck to you!

Swingshiftworker
Posts: 637
Joined: Mar 2010

You have an early stage of PCa that does NOT require immediate treatment.

Recent opinion has suggested that many men (like you and some of us) have been harmed by unnecessary treatment of such cancers.

I know it's tempting to put faith in your physicians and accept their recommendation (which is a standard one) to submit yourself to surgery to cure your cancer. Fact is, surgery may be entirely unnecessary and surgery represents the GREATEST risk to your well being and quality of life -- possible greater than PCa itself.

If you doubt this, read the following article written by a doctor about the risks of surgery and why it may not be the best course:

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

Frankly, I think there are better choices that you can make. Active surveillance is one and radiation is the other. You are an excellent candidate for Cyberknife (a form of stereotactic body radiation therapy) which I and others here have been treated with. It is IMHO the currently the best form of radiation treatment you can receive because it can deliver radiation w/the greatest accuracy and can control delivery for both body and organ movement. Of course, there are other methods of radiation treatment as well, including but not limited to low and high dose rate brachytherapy, proton beam therapy and intensity modulated radiation therapy.

If you don't know what any of these other methods are, DO YOUR RESEARCH and find out BEFORE you make the irrevocable decision to have your prostate surgically removed. Something else to consider are the alternatives and choices you have to make in the event surgery fails, which BTW includes radiation treatment. All the info you need is readily available on the Net.

The FIRST thing that I asked myself when I was in your situation was: Why should I get surgery when, if surgery fails, I'll have to get radiation treatment anyway, especially given the high risk of ED and incontinence presented by surgery? My answer was that there was no reason and I ruled surgery out as a viable choice and focused on finding the best method of radiation treatment available, which I believe I found in CyberKnife.

You may come to a different conclusion. Certainly others have BUT you need to go into this situation fully informed and in a position to make THAT choice. If you blindly accept your doctors' recommendation for surgery, you will have no one to blame for the consequences of that choice but yourself.

Good luck!

jmikew
Posts: 9
Joined: Jul 2012

Hello Mark and I'm sorry you have joined our club...I was diagnosed in February with PC...mine was more aggressive than yours, I was 50 when I found out...started our 3+4 but after surgery came back 4+3 with very very thin margins and covering most of the prostate. Dr. Davis was recommended to me by a friend of the family who is an anesthesiologist. I had the robotic surgery with Dr. Davis in July...my care and recovery has been outstanding. He was successful in sparing the nerves and I have pretty much made a 100% recovery...not wetting the bed and my wife is happy! I can't say enough good things about Dr. Davis...as you indicated he has done over 1500...and does about 4 to 6 new ones a week, pretty much all he does and he is good at it. He is very concerned about the quality of life as well as saving your life. Good luck with your decision...I don't know if surgery is your best course of action...but going to MD Anderson and Dr. Davis would be wise if you decide to have surgery. All the best...mike

Drjohndavis
Posts: 1
Joined: Dec 2012

Excellent discussion on this common dilemma posed by Mark B.

In response, let me state that for this type of situation, we strongly consider active surveillance, along with standard surgery, standard radiation (as a group--external photon, external proton, brachytherapy/seeds), and will discuss rationale for newer alternative methods such as focal therapy or a novel radiation technique. By comparison Gleason 7 cancer discussions would focus more on standard therapy and less on observation or alternatives. High risk disease would also consider standard treatments but also with clinical trials approaches to allow use of novel anti-cancer agents.

Back to this low risk situation, we observe that a repeat biopsy will upgrade 15% of patients and lead to proper initial treatment. However, the remaining repeat biopsies are negative or the same as the initial biopsy, and we consider surveillance--over 1,000 patients estimated are doing this at MD Anderson--many on a protocol with my colleague Dr. Jeri Kim in medical oncology. For patients with very low volume (i.e. 1-2 cores with cancer and less than 3mm of tumor on the biopsy), then we observe a 10-20% chance of upgrading in the first 5 years leading to treatment. Currently, I estimate 25% of my clinical effort beyond initial treatment choice is surveillance, and 75% surgery. Five years ago, the surveillance effort was 5% and ten years ago was zero.

For younger patients, you can enters surveillance with the same rules as everyone, but would certainly switch to treatment for smaller increments in increased volume or grade on repeat biopsy compared to someone over age 70, for example. We are starting to integrate MRI imaging and PCA3 testing in addition to a schedule of repeat exams, PSA, biopsies to identify men who actually have higher grade/volume disease than the starting biopsies show. These are fascinating cases where the biopsies do not show much change in tumor, but the MRI and/or PCA3 is signaling more disease (In fairness, I do have a conflict of interest here as an investigator for Genprobe that makes PCA3---the study focuses on this very issue and has been presented at a public meeting as an interim analysis with the complete version scheduled to submit to peer review in 2013).

As you can see, being diagnosed with low volume Gleason 6 cancer is not imminently threatening, but is a burden in the need to re-evaluate now and in the future. The biopsies remain the strongest driver of thought compared to other tests. For some men, this is not ready for prime time, and they opt for curative therapy. Robotic surgery with maximal nerve sparing and limited lymph node dissection remains a competitive option along with radiation and others. Men should research this dilemma carefully and from numerous sources and their preferences drive the final strategy the most. The ideal scenario for meeting a surgeon is that they do track all the stats listed in a post, but mostly give unbiased counseling. Once a surgical decision is made, then the job shifts to doing the best job possible.

tarhoosier
Posts: 182
Joined: Aug 2006

I will not attempt to discuss this patient with you here as it would be inappropriate.
Your clinical experience shows more men are becoming familiar with Active Surveillance as time and experience demonstrate the benefits of such practice. A man with small amounts of indolent (G6) disease should have this option presented first, along with the issue of continuing monitoring. Such monitoring can occur with any doctor, anywhere. It may be relevant that biopsy specimens are no longer graded with G2, so that what may be a G 2+3 on the path slide is now reported as G 3+3 on the report. Biopsy pathology leads the decision, as you indicate. The difficulty of AS, in my opinion, is the anxiety effect. This is a new experience for those many men who have lived without a lifetime chronic condition such as asthma, diabetes and others which require such monitoring. Nonetheless, younger healthier men should be encouraged to take a significant amount of time to consider their options. Definitive primary treatment is forever and changes the body of the man, no matter which option chosen.

ralph.townsend1's picture
ralph.townsend1
Posts: 353
Joined: Feb 2012

Mark B.

I think that MDACC would not make a decision to remove your Prostate without having look at all options. In my fight against my cancer, MDACC has giving me a 2-3 years more to live. If i had not followed the path, I would be pushing up daisy. The cancer is growing again and I know that they will have something to push it back.

To remove your prostate is not the in of life and removes a cloud over your head. You do not want the cancer get outside the prostate, because then the real battle starts. I was not that lucky ---and you can be. The Dr. Davis is one the best and a enough said.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

As a man who is patient at a major medical institution in CA. enrolled in a state of the art “Active Surveillance with Delayed Treatment” program during the last four years (and not suffering any possible ill effects of any active treatment decision), I am happy to read that the percent of the patients who come to you who choose AS, has increased to 25 percent. I am guessing that this percent is among those who are potential candidates for an AS program. This is significantly higher than the 10 percent of patients who choose AS among those who are eligible. So THANK YOU for having the best interest of your patients in mind, even though there is patient fear and resistance to this protocol when they could take “action”.
To paraphrase your colleague, Dr. Kim,
““There should be a wider acceptance of the concept of active surveillance,” says Jeri Kim, MD, an associate professor in the department of genitourinary medical oncology at the University Of Texas M.D. Anderson Cancer Center in Houston. But “a lot of people are afraid of having cancer and not doing anything about it”

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