HealingWell
Search Close Search
☰

Going through my treatment choices

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/16/2012 4:45 PM (GMT 0)

Although the responsibility to choose the treatment for my prostate cancer belongs 100% to me, I do listen to people close to me, as well to those of you who have gone through this experience. Many thanks.

God, give us grace to accept with serenity
the things that cannot be changed,
courage to change the things
which should be changed,
and the wisdom to distinguish
the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace.


---Reinhold Niebuhr (1892-1971)

　

During the few weeks since my diagnosis (12/21/12), I have read Patrick Walsh's "Guide to surviving prostate cancer (2nd edition, 2007), Peter Scardino's "Prostate Book" (2005), Eric Klein's "Prostate Cancer" (2008) and Arnold Melman's "After Prostate Cancer" (2011). All of them are written by surgeons who consider the surgery the gold standard. I could not find any book written by a radiologist.

So far, I have met a surgeon at the University at Michigan (who recommended surgery) last week and I will see a radiation oncologist at U of M and a surgeon at

Henry Ford this week, followed by a CyberKnife radiologist appointment at St. Joseph the following week.

My goals: 1.CURE CANCER 2. Maintain continence; 3 Minimize other side effects.

Based on my understanding of my cancer and using different source, I compiled questions (pertinent to my case) to ask doctors; they may help others to assess their case.

DIAGNOSTIC

55 years old, 5' 11', 170#, no symptoms before PSA testing in October 2011. Physically active, no other disease and no additional medication other than lorezapam (0.5 mg) started after diagnosis (only as needed to contain my cancer-related anxiety).

"Biopsy results (biopsy 12/15/11, results, 12/20/11):

T1c, low grade, Gleason score 6 (3+3,50%/50%), 2 of 12 needles positive:

Needle 7 Left lat apex, pattern 3+3, < 5%

Needle 8 Left med apex, pattern 3+3, 5%"

Where is the cancer located (peripheral, central, anterior, transitional)? How confident are we on the Gleason score reading (3+3)? For the confidence in the risk of the cancer, should I get another biopsy examination?

How close to the margin (peripheral border of the prostate ) were the positive biopsies ?

What are my PSA readings telling about the type of cancer? (2.8/09, 3.4/10, 4.2 & 3.7/11)

Do you think there is any Seminal Vesicle involvement or lymph nodes?

What do you think about the size of the prostate, 44.6 cc? How can I get the ultrasound recording?

What is the likelihood to be a multifocal cancer?

Are there additional tests that we can do to gain the most complete understanding of the stage, spread and aggressiveness of my cancer MRI, CAT or bone scan)?

What molecular biological marker should be examined to better predict the aggressiveness of the cancer? TMPRSS2:ERG and PCA3 DNA (prostate cancer antigen) are expressed at high levels in 95 percent of prostate cancers.

What would you estimate are the chances that the cancer is contained within the prostate Partin tables)?

Could my GI symptoms be related to my diagnosis? Or the slight discomfort in the right side?

　

TREATMENTS

Dr. (surgeon, radiation, med oncologist), what are the treatment options and what would you recommend?

Based on your experience, why is this the right approach for me?

What is the probability of my cancer recurring with the treatment you propose (%)?

What are the benefits of the type of therapy you are recommending?

How many procedures of the treatment you propose have you performed (total and yearly)?

Would you recommend active surveillance?

Are there dietary or lifestyle changes that I can make that can slow prostate cancer growth or that may allow my body to be more healthy to fight this prostate cancer?

ROBOTIC SURGERY

If I select surgery, would you recommend nerve sparing for me (unilat/bilat)?

How many procedures have you performed?

What are the positive margins for your patients?

What are the cances that I will be cured (cancer free, >10 yrs)

What will we do to monitor my prostate cancer following the surgery?

What can I expect following the surgery in terms of recovery time? How long will it be before I can return to my normal activities?

What level of success have you had in preserving urinary continence and nerve sparing/ED (%) at 6 month and 1 year?

RADIATION

Are there specific radiation therapy approaches that we should discuss or consider, such as 3D IGRT, brachytherapy, proton? What about fiducial markers to help guide the radiation dose in real time to possibly prevent toxicity (Calypso, CyberKnife)?

Do you have both External Beam and Seed Implant Radiation ?

How long has he/she been doing Seed Implant Radiation ? How long External Beam Radiation?

How will this procedure precisely target the cancer tissue but leave the normal tissue unharmed?

What dose of radiation will you be using and how/why did you select that dose of radiation?

What about preserving urinary and bowel continence (%)? Are there other urinary or bowel side effects that I should be concerned about at 6 moths and 1 year?

What is level of success in preserving potency in your patients following this type of radiation therapy?

Do you recommend that we initiate androgen deprivation therapy ("hormone therapy") before the radiation treatments? Why or why not?

How often will I need to come into the clinic for treatments?

What can I expect following the treatments in terms of recovery time? How long will it be before I can return to my normal activities?

Are there delayed side effects that might appear over time (after 3 years, including cancer in another organ?

What will we do to monitor my prostate cancer following the radiation?

Are there clinical trials involving radiation therapy that are reasonable for me to consider?

Post Edited (NewDiag) : 3/9/2012 11:06:41 AM (GMT-7)

Posted 1/16/2012 4:57 PM (GMT 0)
First of all welcome to the fraternity you didn't have to Rush to join. You have certainly done you homework and have all the right questions to make  the best decision for your PC and its treatment. I am not an expert nor a doctor but AS is an option with your small low grade G6 tumor. Also I would think Proton RT could be a very viable choice if you do not want to wait for treatment.  Proton was my first choice for treating my G7 DX, but when I found out my insurance would not cover the cost in Alabama and that the 8 week of dally treatments would have to be at the closest PRT center 300 miles away this option was dropped and i chose surgery and so far no regrets. I did look at seed RT but ran into resistance from the insurance company about which clinics I could use.

Good luck and after all your questions are answered you will be making the right decision because it is the one YOU will make.

Terry TWG

Posted 1/16/2012 5:09 PM (GMT 0)
My diagnosis was very similar to yours, although I was 61 at the time (turn 62 later this month). I spent some time considering all possible treatment options, including talking to patients who had actually been treated via surgery, radiation (both ebrt and brachytherapy). You have options. I chose proton beam therapy at IU Health at Bloomington, Indiana. I had not heard of proton therapy when I began my research but ultimately concluded that for me, with my diagnosis and my concerns over minimizing side effects, proton offered the best prospect of effective treatment and minimal SEs. You may conclude differently than I did, but you should take a look, as Water Guy suggests, at proton therapy.

Sorry you are here--we all know how you feel. You have time to decide, so study your options carefully and make your decision based on what you believe is right for you.

Steve
Posted 1/16/2012 5:25 PM (GMT 0)
Welcome,
You list is certaintly very through. I would suggest reading "Invasion of the Prostate Snatchers" by Dr Mark Scholz for a good explaination of low grade PC, which seems to be what you have, and "Brachytherapy and IMRT" by Michael Dattolli. Scholz is an oncologist and Dattoli is a radiologist and both are considered tops in their field. These will give you a look at PC from an oncologist's and radiologist's point of view to balance the surgeons you have read.
Your psa velocity, doubling time and psa density all indicate a very low risk disease. This is coupled with a G6, low core number indicate that any treatment, including no treatment, will result in very good results, so the side effects of the various treatments should be the prime factor in your decision making.
Since you are really into knowing all you can about your PC I would recommend you have a consult with Dr Barkin, he is a PC coach that can answer all your questions and give you an unbiased guide through all your options. He is also realy big on getting futher testing to better determine you status. I think his services are free, but require some type of donation to his foundation. Look up "pcref.org".
Posted 1/16/2012 5:39 PM (GMT 0)
Since you're looking at radiation, I'd suggest you also look into HDR brachytherapy. My cancer is similar to yours and I had almost all the same options - mostly 3+3 Gleason scores. If I hadn't had a Gleason 3+4 in one sample, I might have done watchful waiting or active surveillance. As it is, I decided I needed to move forward, and looked at all the options.

Not many people seem to include HDR brachy in their alternatives for some reason, especially as a monotherapy. I found out about it during my research and it makes the most intellectual sense to me. Research results don't go for as long as some other treatments, but those that exist look very good. I'm not recommending it, just saying it's another alternative that deserves attention.

Whatever you choose, we wish you the best. Keep us posted on your decision and progress.

Greg.
Posted 1/16/2012 7:13 PM (GMT 0)
I had HDR brachytherapy and found the best information at www.cetmc.com. This is the website of Dr Jeffrey Demanes, the HDR pioneer and Chief of radiology at UCLA. You may be a candidate for monotherapy.
Posted 1/16/2012 7:43 PM (GMT 0)
If your interested in learning a 21st century treatment I include a link below. I've been through it and highly endorse it. Which should come as no surprise as I have remained the most successfully  treated man here, since undergoing my TFT.

http://3dprostate.com/
Posted 1/16/2012 7:45 PM (GMT 0)
Hi and welcome You have arrived in the world of prostate cancer (PC) at the time of an apparent paradigm shift in the approach to managing low risk PC…similar to your diagnosis.   Many of the PC experts today are questioning whether attempting to “cure” low risk PC is more good than harm, or the opposite. There has been a tsunami of PC overtreatment discussions in medical journal editorials, newspaper articles, and medical conferences, which was ushered in with the publication in 2010 of “The Invasion of the Prostate Snatchers” (previously recommended to you in this thread) by one of the world’s leading experts in PC care, Dr Mark Scholz.   Today, on a regular basis—perhaps now on nearly a monthly pace—we are seeing more and more of the PC medical experts challenging their fellow professionals about PC overtreatment.   As the momentum has grown in the medical community to recognize and stop overtreatment, the questions have begun shifting from the original focus on whether aggressive treatment is simply inappropriate , to whether it is an unethical practice of medicine clouded (at least in part) by financial self-interests.   Today, we still see “treatments” marketed on billboards and in targeted marketing campaigns.   As Dr Stephen Strum (another of the world’s leading PC experts recently wrote, “It is sad and tragic for the man with PC that such internal bias exists [in the medical community] and that some surgeons and some radiation oncologists cannot see that the ‘emperor is wearing no clothes.’”   Keep in mind that in general , surgeons will recommend surgery, and radiation oncologists will recommend radiation… The randomized long-term studies show that there is no survival benefit to treating low risk PC.   The fact is that the same small percentage (single digits) of men with low-risk PC will die of PC whether they pursue an aggressive treatment or not.   Many are, therefore, left with life-altering side effects that they never needed to expose themselves to. The paradigm shift we are seeing is coming with a growing wealth of information.   For example, the Prostate Cancer Foundation (PCF; link ), an organization that many of us here at HealingWell support, recently introduced the National Proactive Surveillance Network (NPSN) because (as the website banner says) “sometimes the best option is deciding that treatment is not needed now.”   The NPSN website ( HERE ) is a good reference source for newly diagnosed, low risk PC patients.   Do yourself a favor and get educated on management of low risk PC. Best wishes for your journey.   edit:   fixed typo Post Edited (Casey59) : 1/16/2012 2:03:38 PM (GMT-7)
Posted 1/16/2012 9:02 PM (GMT 0)
You have done a great job so far in getting yourself educated and ready to make a treatment decision. As John T pointed out, your numbers would seem to bode well regardless of our choice. I also agree with his point about looking carefully at SEs.

When I was dx'd my goals were the same as yours and in the same order. I started out leaning toward surgery. After going through "the process" (including doing a lot of reading on this site), I changed my mind and did a combo of BT and IGRT. I'm very happy with the outcome.

You have a lot of good options and plenty of time to choose the one you are most comfortable with. With your approach, you will make a good one.

JoeFL

Posted 1/16/2012 10:30 PM (GMT 0)

Thank you to all of you who already provided invaluable insight and support in my new journey.

At this stage, I feel that there is room to more investigations to pinpoint the extent and aggressiveness of my Pca.

This afternoon I started to read Dr. Scholtz book - excellent reference. Based on your input and more neutral opinions, most likely I will not rush to a treatment decision. I have also ordered one of Dr. Dattolli's books.

I live in SE Michigan and not all treatment options are available locally; proton therapy is not available in Michigan and I checked the website of IU Health at Bloomington, Indiana, as well as a couple of locations in Chicago area.

The TFT Cryotherapy seems very promising and I will ask about it during my future doctor appointments.

I am open to anything that make sense and I can judge based on facts...
Posted 1/17/2012 12:16 AM (GMT 0)
Hello Victor and welcome to HW.  As you can already see, you can get some great insight and info here.

You have already received some very good advice and I think you are very well prepared for the meetings with your docs.  As JT said, most any of the treatment choices are likely to cure your cancer so it is smart to focus on the SE's and your quality of life.

Re TFT, we have at least one member (Ziggy) who had this treatment several years ago and is doing very well.  Low PSA, no cancer on subsequent biopsys and no remaining SE's.  If Ziggy does not weigh in on this thread, may I suggest you find one of his old posts and email his directly.

Good luck and keep us informed of your progress,

Tudpock (Jim)

Posted 1/17/2012 4:07 AM (GMT 0)
Hi Jim,
I appreciate your message; I will meet with the radiation oncologist tomorrow and I'll ask about all type of radiation therapies. Ziggy did provide his input and a link as well, for which I thank him.
I've almost finished Dr. Stoltz book, and it did bring balance to the books written by surgeons.
Posted 1/17/2012 2:09 PM (GMT 0)
NewDiag,

You are prepared so much better than I was to make to right treatment decisions, I did not find this forum until I was 6 weeks post surgery and looking for information on Trimix injections that my URO was recommended for me. I can't say if I would have done things differently if I had found HW as early as you but at least I would have been more informed.  All the best to you as you make your journey.

Terry TWG

Posted 1/18/2012 7:55 PM (GMT 0)
You seem well prepared and have received a lot of good information. You can see my journey by clicking on the link in my signature. My advice is to take your time and explore all options.
Posted 1/18/2012 11:44 PM (GMT 0)
I too like Ziggy9' had targeted focal therapy (TFT) at the University of Colorado. I am 18 months post procedure. Quality of life is excellent, no urinary or sexual issues. Checkout my story in the news section of the 3D prostate webs Zippy provided you
Posted 1/19/2012 6:51 PM (GMT 0)
Wishing you the best as you begin the journey.
✚ New Topic ✚ Reply