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Newly diagnosed - requesting help deciding on treatment options

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Posted 7/26/2017 7:09 AM (GMT 0)
I’m so glad to have found this forum. I’ve just been diagnosed with “Intermediate Risk” PC. My biopsy results are scored as T1c N0 M0 with Gleason score of 7. Most recent PSA is 5.7

My doctor recommends treatment and says I can choose either surgery (he does DaVince robotic prostatectomy) or radiation (referral to oncologist who offers IMRT radiation treatment).

I’m finding so much contradictory information on which would be a better choice, both for likelihood of cure and for likelihood of various side effects.

Given my numbers, and your experience, would you lean towards robotic surgery or IMRT radiation treatment.
Does one vs the other give a better chance for cure?
Are there well-documented percentages for cure with each treatment?
Does one vs the other result in fewer urinary and bowel problems?
Preserving erectile function would be great, but on balance is less important than than urinary and bowel control for quality of life reasons.
Do I need to ask for a bone scan before treatment?
Are the 2 options I’ve been offered the best ones to choose from?

I am retired, so finding the time for 44 radiation treatments is not a factor.

The surgeon and radiation oncologist both say my case is very curable. I am most concerned with side effects.

The surgeon says he would remove the prostate, vas deferens and lymph nodes for testing. The Rad Oncologist says since there is no evidence on the MRI of any disease outside the prostate there is no reason to remove or treat the lymph nodes now.

One source said that radiation would result in turning the entire prostate into scar tissue and would make future treatment more difficult if it failed. Another source said the radiation targets the cancer cells and does not damage the healthy cells, so afterwards you still have your prostate and it is healthy. Which of those descriptions is closer to the truth?

Thanks in advance for any guidance you can offer.

______
Diagnosed July 1, 2017
69 years old - otherwise very healthy with no chronic illnesses
Highest PSA - 7.04 (April 2015) -
PSA Retested - 3.56 (May 2015) - then gradually rose back over 5
Most Recent PSA before biopsy - 5.74 (May 2017)
MRI with & w/o contrast - June 2017 - showed one focus at apex of prostate / nothing visible outside the prostate or in lymph nodes.
MRI guided needle Biopsy - 15 cores — 3 with Gleason score of 6
6 with score of 7 - half were 3+4 / half were 4+3
Staging diagnosis = T1c N0 M0
Posted 7/26/2017 7:27 AM (GMT 0)
The surgeon would do a nerve-sparing prostatectomy using a DaVinci system. 4 or 5 small incisions for instruments and one larger incision to pull the prostate and lymph nodes out. He says it would take a couple of hours, and I would be admitted overnight for 1-2 nights.

The radiation oncologist would do 44 daily treatments over 8.5 weeks using an IMRT system. They would have me get 3 gold seeds implanted in my prostate first, then give me some tattoos for alignment, and a positioning scan each day before treatment to match against a planning scan done before treatment begins, all designed to aim the radiation correctly.

Would I have a catheter for 2 weeks following either procedure, or only following surgery?

Is there any data on the frequency of positive surgical margins using the Da Vinci system.

Can IMRT radiation be targeted accurately enough to get cancer cells near the outer margin of the prostate and still miss the nerves.

Can IMRT treat the whole prostate and still miss the urethra that runs through it? The oncologist says yes. They make a form to lie down on, and use the scans to visualize the prostate and move the table to get the exact same position every day, and the machine aims with sub-millimeter accuracy.
Posted 7/26/2017 10:31 AM (GMT 0)
First so sorry that you are encountering this. Many people will give you pros and cons of both procedures. I decided for surgery and had DaVinci, but others with the radiation route. I think you have to just research all options and then make a decision that is best for you.

I went the surgery route because of family history (both grandfathers, my dad, two uncles now) and wanted to know for sure if it had spread, etc. It was the best decision for me. Others select radiation and feel great about it as well.

As far as the catheter, I had it for a week after surgery and it was what I dreaded the most. Wasn't as bad as I thought.

I've been one of the lucky ones, no side effects. Took time for erections to come back, but now no problems.

Best of luck as you seek the solution that is best for you. Once I decided, there was a peace and calm. You are at the right place to seek advice and get to a solution for you.
Posted 7/26/2017 11:36 AM (GMT 0)
Sailor man
I had treatment for prostate cancer in 2004 so I'm not up to date on all the options offered today but I can share my experience.
The best advice I recieved was from my urologist that advised me to take three months to educate myself about all treatment options and then to research the best practitioners of each, make an appointment with them and discuss their procedure with them including incidence of complications such as impotence and incontinence. Bear in mind that each practitioner is predjudiced toward their therapy when deciding. My urologist also counciled that I should chose the one that had the possible side effects I would be most willing to live with in case I in fact I had to. After much research, reading and consults it was very clear to me that quality of life was far more important to me than survival.
I ultimately chose brachytherapy, which is implantation of radioactive seeds. I had about 80 of them implanted and have a good quality of life, not perfect but very acceptable, no incontinence, no impotence but mild discomfit after sex. I'm told it could be treated with a low dose of an older antidpressive but I'm not interested. The mapping of the prostate was a little uncomfortable, no catheter on discharge after day surgery and recovery was easy. You sit on an ice pack or package of frozen peas off and on for a couple of days and the first two or so days of urinating are accompanied by a painfull burning sensation that makes you stand on your toes but recedes within a minute upon completion of voiding. It's great to make bubbles again.
I hear good things about proton therapy but I'm not knowledgeable about it. Take your time and no matter the result don't second guess your choice as first choices are almost always the best one for you. Good luck with your treatment
Hope this helps
Posted 7/26/2017 1:00 PM (GMT 0)

sailor-man said...
..My doctor recommends treatment and says I can choose either surgery (he does DaVince robotic prostatectomy) or radiation (referral to oncologist who offers IMRT radiation treatment)....

You have plenty of company with most of us in the very same quandary after initial diagnosis. I also was a candidate for either surgery or radiation (MD Anderson urologist) and if I wanted to go the radiation route, my Doc recommended brachytherapy (seeds.) I can't quote survival statistics but as I recall they are very similar for surgery and radiation.

There are potential side effects with both options, I was concerned with radiation side effects not manifesting until 2-5 years post treatment so I chose da Vinci surgery at MD Anderson. My surgeon has done over 2,000 operations with the machine so I had complete confidence in him.

Even though I needed salvage radiation and ADT, I have zero regrets about choosing surgery. My pathology report upgraded my Gleason from a 3+4 to a 4+3 and out of the 44 lymph nodes excised, one of them was positive. Also a sample of the tissue was sent off for genome testing (Decipher) to determine my risk category. Since I was node positive and higher risk, that was the trigger for ADT and SRT.
Posted 7/26/2017 1:31 PM (GMT 0)
Sailor-Man: Sorry you had to join our club but you are amongst people who fully understand what you are going through. If you have not had a second opinion on your biopsy slides, I would recommend looking at the sticky notes and getting that done first. You are right about the cure rates in regard to RALP Vs RT. That said, you must consider the SE's as others have noted. Make appointments with ROs that specialize in LDR Brachy Thearpy, HDR Bracy Thearapy, SBRT (Cyber Knife) and RALP and ask them the tough questions about cure rates and SEs. My conclusion came rather quickly with the help of the Saints on this forum; LDR Brachy Thearapy.

I had morning appointment, was walking soon after, with some burning pee. Some crotch discomfort, bruising, and painful orgasims followed that ended in less than a month. Flomax raised more problems than the original therapy but that is also a memory. The only SE that remains is a diminished amount of ejaculate.

Know that we support any decision you make and keep us up to date so that we might be able to give more help from our own experiences. Best wishes.
Posted 7/26/2017 2:25 PM (GMT 0)
Sailor-man, You are asking the right questions, and that greatly increases your ability to ultimately make an informed decision that you will be content with.

There are many comments that you will hear about every treatment, and most of them are based on decades-old studies, experiences, and equipment. Every form of treatment has had major changes in the past 15 years or so.

There are several methods of secondary treatment after primary radiation, including using SBRT:

https://pcnrv.blogspot.com/2016/08/salvage-sbrt-for-local-recurrence-after.html

Another source of information would be attend one or more local prostate cancer support groups, where you can share your concerns face-to-face with men who have had those experiences. Good luck.
Posted 7/26/2017 2:25 PM (GMT 0)
I finished IMRT treatment in November 2015 and it was a non-event. Each treatment was only a couple of minutes and I was in and out in less than 15 minutes. Only post treatment side effect is a loss of ejaculation and an occasional flare-up of an old hemorrhoid.
Posted 7/26/2017 2:40 PM (GMT 0)
Sailor-
Sorry you have to join this club. However, you are taking the right approach by asking questions about the various treatment options. One thing I'd mention is that surgery at 69 is not always the best option. It would depend on your overall health. It is major surgery with the typical risk factors.

I just read a piece in the paper this morning about a new study of outcomes for prostate cancer treatment published in the New England Journal of Medicine (I think). Bottom line is there was no significant difference after 10 years between treatments.

My story is in the link below.

You have time to research options, talk to people, attend support group meetings, and make an informed decision that's right for you. Don't rush. Good luck.
Posted 7/26/2017 2:56 PM (GMT 0)
So sorry you have to join us. That said, with your diagnosis your chances for a cure are excellent. A few thoughts...

First, get a second opinion on your biopsy slides from a lab that specializes in reading them. The newly diagnosed sticky at the top of the page explains how to do so. It's quick and easy and will give you greater assurance about your diagnosis as you evaluate your options--an upgrade or downgrade could make a difference in your decision.

Second, pretty much every treatment has an equal chance of curing you. So your focus should be on the side effects and the type of treatment that you're more comfortable with. For surgery, you want the most experienced surgeon you can find. For radiation, there are several types. While IMRT is the most common, it's not necessarily better and it does take significantly longer. You need to find radiation oncologists that specialize in each type (SBRT, HDR brachy, LDR brachy) to discuss these.

Where are you located? We might be able to make some suggestions of centers or doctors you can find.

Good luck to you and let us know how we can help.
Posted 7/26/2017 3:49 PM (GMT 0)
Sailor--
Although we're the same age your diagnosis carries a little more risk than mine. IMRT is only one of the Radiation options and it appears to be being replaced with higher tech guided versions as well as ones using fewer treatments. I'm very happy with my choice SBRT and experienced zero quality of life issues. If you post your location I'm sure you'll get more specific recommendations. Keep learning and researching your options and be grateful you've found this forum. It's a tremendous source of information using the 'search' option.
Posted 7/26/2017 4:17 PM (GMT 0)
You seem to have been listening and taking notes from the jump...keep on doing what you have been doing...If it was me a would go with the some kind of Brachytherapy...but Im out of the loop on the other radiation Tx. Your medico seems ok...tho he sure wants his institution of medicine to get your business...a little to eager fo my likens...but that is the rule now not the exception...What ever you do get treated in a medical center that has a lot of experience in what they do...these institutions are less likely to push you into doing smothing you may not want to do... pick up a book by someone who knows something about the disease and study...not read...the portions that apply to you...there is no gold template around any more...its like when you buy a new house...they never make the perfect one...they mix up the features...human beings are some what fickle to perfection...it bothers them...in spite of the wine they consume...Good Luck Be your own advocate...
Posted 7/26/2017 4:26 PM (GMT 0)
Sailor Man,

Welcome to the forum. Glad you found us but sorry you found yourself it a situation where you needed to look. I hope we can help.

If you tell us where you are (nearest big city is enough) then we might be able to recommend a doctor or an institution where you could go for a consultation.

Doctors tend to be very knowledgeable in their own areas of specialization but much less so with what is going on elsewhere. Surgeons know the latest advances in surgery and what can be accomplished that would have been impossible only a few years ago but they don't always know the latest developments in radiation. That's why patients who want the best information available need to load up their dance cards with all the specialties.

In your case this means that you should probably talk to a few more radiation guys. IMRT is a good treatment option for you but SBRT might be just a bit better. High- and Low-dose-rate brachytherapy (HDR/LDR) are also possibilities. Surgery is also a possibility but younger men tend to recover from surgery more quickly and more completely and you are approaching the age where radiation makes more sense.
Posted 7/26/2017 4:29 PM (GMT 0)
You and I are very similar. We Intermediates are the hardest to guide towards a modality. In fact, the Gleason Score is being shunted aside for what is now a grouping system. I am in Group 3. Find out your group #.

Did you get a 2nd opinion on your biopsy slides from Dr. Epstein? I am 7 days since surgery, I had the cath taken out at 6 days, I found it so irritating and presently my privates are very swollen. My wife is at Walmart now buying diapers! I'm too embarrassed. I will learn today or tomorrow if they got it all, they think they did.

So...now that I have been on this forum a couple of months I can say this is a great place to get advice about everything EXCEPT which treatment to do. You will hear lots of anecdotal accounts, some are evangelists for one treatment or the other, but since each man reacts differently to each type of treatment, its all meaningless. You should learn how to use meta studies and the nomograms, such as Sloan Kettering's. A fellow here named Tall Allen has lots of links to studies, look for his posts. You need to learn how to decipher if a study is true or a marketing tool.

I'd say take a deep breath and go back one year's worth of posts here and click on the ones whose subject matter is relevant to you. I say just one year because anything older is ancient history in PC.

I don't know what metro area you live in but my workflow was to research and make an appointment with the best of the best at the Chicago area's teaching hospitals. By doing so I ended up with a surgeon known to be a Doctor's Doctor, the one they go to when they need PC surgery, he has done 4000+ and is also a professor and researcher. If you want to stack the deck in your favor, minimize incontinence and ED, that's the best route, even if it's another modality.

I would say that an independently urologist owned "clinic" is dangerous because when you go in for a consult you really are in a sales meeting. I found the local famous brachy clinic to be such, all their "proof" of success was happy patient videos. Look for a NCNN hospital in your part of the country. If you do opt for surgery get someone who has done 2000+.

At 64, with a G score of very close to an 8, and no "evidence" of it having spread, I opted for surgery. I hate how they use the word "evidence", it's as if the lawyers made them phrase it that way? But I have other conditions that preclude the hormone therapy that radiation usually entails. Also, at 64, I'd rather have the SEs rear their ugly head at the beginning whereas with radiation they get worse over time.

But don't recreate the wheel, go back one year's worth of posts here.

Best,

Nick
Posted 7/26/2017 4:43 PM (GMT 0)
Sailor ....again welcome!.....I had the IMRT and it was just as you described in your second post ......VERY easy and the 45 fractions was not an issue for me either . It may be becoming a treatment done less as time goes on with the fewer fraction treatments available . But as I understood it when I asked about the fewer treatments , it depends on your situation. I found it all very easy and I am now working on ED with continuing positive results.....Please study up on ALL the SE`s of removal........for me, that was what made my mind up ......good luck !.....David
Posted 7/26/2017 5:28 PM (GMT 0)
Sailor-man,

Welcome to our club, that no one wants to belong to. You are starting off well to gather good info before making decisions.

On your question:

sailor-man said...
Is there any data on the frequency of positive surgical margins using the Da Vinci system.

Here is something from the manufacturer claiming similar margin rates as open surgery, and they list nine studies:

www.davincisurgery.com/da-vinci-urology/da_vinci_prostatectomy.php


And in the following link, the docs from a variety of institutions are having a panel discussion and seem to be implying a 10% to 20% margin rate, open or robot (assume Da Vinci?). But it will be on lower end with an experienced surgeon, and may even be higher than that range for a T3 case (20% - 30%) because some cancer has bulged out of the prostate for those cases and makes the cutting more complicated.

/csn.cancer.org/node/301780

All kinda ballpark, but maybe it will help.

Robert
Posted 7/27/2017 2:41 AM (GMT 0)
Thank you for all the thoughtful replies. I have another consult with the radiation oncologist this week, so I'll have some follow-up questions shortly.

Regarding my location: I'm in central Illinois in the Urbana / Champaign area.
Posted 7/27/2017 3:38 AM (GMT 0)
Sailor,
You are asking all the right questions. Brachytherapy, low or high dose should also be options as we're as SBRT.
The uretha is very resistant to radiation, that's why incontinence is rare with radiation and much more common with surgery.
Age is an important variable as older men do much better with radiation.
No catheter with radiation, days or a few weeks with surgery. Cure rates are similar with your stats, but radiation has the edge on overall side effects.
Brachy is a one hour out patient procedure, SBRT is 5 treatments vs 45 for IMRT. Good luck
Posted 7/27/2017 6:19 AM (GMT 0)
"Given my numbers, and your experience, would you lean towards robotic surgery or IMRT radiation treatment."

What any of us, or any doctor, would do is irrelevant - you have to figure out which therapy is right for you.

"Does one vs the other give a better chance for cure?"

You can see what your odds are by filling in this nomogram: /www.mskcc.org/nomograms/prostate/pre-op
As you see, the odds that you will remain progression-free within 5 years is 63%; within 10 years it's 48% if you have surgery. The odds for a man with GS 4+3 having, say, SBRT is 79% at 7 years.

Are there well-documented percentages for cure with each treatment?

Yes - as you see, many men having radical therapy have no further progression.

Does one vs the other result in fewer urinary and bowel problems?

They are different in number and kind. about 20% of men electing surgery have lasting incontinence. Incontinence is rare after radiation, but irritative symptoms often transiently occur.

Preserving erectile function would be great, but on balance is less important than than urinary and bowel control for quality of life reasons.

about 75% potency preservation with SBRT or HDR brachy. about 37% potency preservation after nerve-sparing surgery.

Do I need to ask for a bone scan before treatment?

Not necessary with your Gleason score, and PSA.

Are the 2 options I’ve been offered the best ones to choose from?

Other SBRT, HDR brachy monotherapy, EBRT with an LDR brachy boost are better options. There is no reason to have 40 IMRT treatments - it can be done in a lot fewer treatments if you have to have IMRT.

One source said that radiation would result in turning the entire prostate into scar tissue and would make future treatment more difficult if it failed. Another source said the radiation targets the cancer cells and does not damage the healthy cells, so afterwards you still have your prostate and it is healthy. Which of those descriptions is closer to the truth?

Radiation does not turn the entire prostate into scar tissue. It ablates tumor cells and leaves many healthy cells intact. It does, however, make salvage surgery more difficult. They prefer other kinds of salvage techniques after radiation.

Would I have a catheter for 2 weeks following either procedure, or only following surgery?

Catheter not used with radiation.

Is there any data on the frequency of positive surgical margins using the Da Vinci system.

Yes - ask your surgeon what his positive margin rate is. If it's over 10% for men with stage T2, find another surgeon.

Can IMRT radiation be targeted accurately enough to get cancer cells near the outer margin of the prostate and still miss the nerves.

Radiation doesn't impact nerves - it may impact blood vessels.

Can IMRT treat the whole prostate and still miss the urethra that runs through it? The oncologist says yes.

No - of course not. They don't target the urethra but it gets a high dose of radiation anyway. Count on having some urethral inflammation for a few weeks. There are medications that you can take during that time to feel more comfortable and make peeing easier.
Posted 7/27/2017 12:08 PM (GMT 0)
Sailor-man,

When I had my treatment, I was living an hour's drive south of Cham-bana, and I opted to go to St. Louis and was treated at Barnes. I'd strongly recommend you call over there and make appointments with the prostate cancer teams there--it's a top-notch institution with world-class doctors. Nothing against the local docs at Carle, but the step up locally is to go to St. Louis.

I had RALP with Dr. Figenshau, and have had a great outcome. Their radiation docs are excellent as well. If you go to the Siteman cancer center website, there is a link to how to contact them for new patients. They can set up multiple consult appointments all on the same day so you only need to make one or two trips down.
Posted 7/27/2017 12:32 PM (GMT 0)
My only suggestion is to get the very best doctor you can find, whichever treatment you choose. You only get one chance to do this and experience matters, particularly with regard to side effects. It matters a lot.

I'd suggest that you carefully consider all your options, overlook nothing, and ask very pointed questions bout how many procedures the doctor has performed.

Good luck and good health.
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