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newly newly newly diagnosed -- do you think this warrants surgery?

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Posted 4/23/2017 4:46 PM (GMT 0)
I am sorry to hear about your husband. Our journey is about 2 months ahead of you. We started with a urologist out of St. Joseph in Orange who is the one to do the biopsy that diagnosed the cancer. That was on 3/9. He suggested my husband get a MRI and a new PSA. The nurse scheduled an appt for a month and a half later which didn't sit well with us. When you are slapped with the C word you want facts and quicker action.
Our good friend, who does nothing but Medical Mal law is our go to guy for referrals. He knows everybody in So Cal. He knows who is good and who is not. He recommended Dr. Ahlering out of UCI. We got into him sooner than our original Uro. He spent a good hour and half with us and the appt was only done because we had asked what we needed to. He suggested a review of the biopsy with Dr. Epstein before we did.
We are waiting for the results from his review. Anna in his office is amazing and from the start gave us a cell number to call at any time. Unreal. We are meeting with an RO on Tues and a 3rd consult with a Dr. Yoshida on Wed. The information on this site has been invaluable and we are so appreciative. We have not made a final choice yet. I feel your anxiousness at choosing the right treatment.
I may get booed out of here but I sort of have the feeling like there is surgery shaming on the site. Kind of like breastfeeding vs bottlefeeding. I am not sure how to feel and it makes our path to treatment excruciating. Just like many medical forums you don't hear from people that got a successful treatment and went on their merry way. There are study after study which can give opposing ideas. I hope you and your husband find your answer and feel good about it. We are still on a fence. The radiation and time needed seems a little oppressive for my husband with all of his work constraints. I wish a little fairy would tell us what is the best choice base on his numbers and all. Good luck to you and keep us posted.
Posted 4/23/2017 4:54 PM (GMT 0)
No surgery shaming, but breast feeding is better smile
Dr. Ahlering is a fantastic surgeon, he was on my shortlist. If you can stomach it, there is a video of a RALP procedure by him on YouTube. It shows what an fine artist he is, and it illustrates what an intricate procedure prostatectomy really is.

Post Edited (searchinginla) : 4/23/2017 11:12:54 AM (GMT-6)

Posted 4/23/2017 4:57 PM (GMT 0)
your husbands numbers are very similar to mine except my DRE was normal, and like I said I had a 40% chance that my cancer was contained. i'm in my seventh year of remission. never incontinent, fully functional with the aid Cialis.

also, i'm not in the "you got plenty of time to make a decision" camp. I asked my doctor how much time I had to make a decision. he said "two weeks, not two months".

ed
Posted 4/23/2017 6:39 PM (GMT 0)
"core fragments" occur when the core breaks apart coming out of the needle, a common occurrence. So if both sides of the same core had cancer in it, you wouldn't double count it just because it split in half. The number of cores taken should be on the biopsy report. But also remember that the nomogram you're looking at was not based on targeted biopsies, only on TRUS biopsies. Most nomograms have an accuracy of about 70%.

up4thefight-
You have to understand that most men only see a urologist (who really knows very little about therapies other than his own) and never get beyond that single opinion. That's why most men are treated with surgery. If many of us encourage seeing specialists in other therapies as well, it is only because many men need encouragement to do so. Jim's experience with his wife is not an isolated example - wives, co-workers, friends, relatives all have influential opinions, but are often based on their feelings and anecdotes rather than real evidence. Your remark "When you are slapped with the C word you want facts and quicker action" reflects the panicked decision-making that propels many patients to go with the first treatment option presented. In truth, men who took more than 3 months to make a decision did no worse than men who took less than 3 months - even with a high risk diagnosis. That was true whether they ultimately chose surgery or radiation.

For the primary treatment decision, I have a few "biases," if you want to call them that - I would call them opinions based on the best, most recent evidence. I do acknowledge that there is precious little high grade, Level 1 evidence to go on, so there is uncertainty attached to almost all decisions. My first "bias" is that low risk men can be safely observed with active surveillance. Another "bias" is that high risk men are more likely to be cured by brachy boost therapy with ADT than with surgery or single modality radiation.

That leaves the intermediate risk category on which I have very few "biases" - surgery, SBRT, and brachytherapy are all good options (maybe seeds with external beam for "unfavorable intermediate risk."). They all have good cure rates. They differ on the probability of side effects. The only way to choose the "right" one is for the patient to assess what is most important to him - that's a job that no doctor or any other person can do for him.

Another "bias" I have is that, everything else being equal, shorter duration radiation treatment is better than longer duration (i.e., SBRT in 5 treatments is better than IMRT in 40 treatments), and that less expensive is better than more expensive (IMRT and proton therapy are the most expensive).
Posted 4/23/2017 7:05 PM (GMT 0)
Sorry to hear about facing this at such a young age. I followed AS for a couple of years but I had some parameters for when I would have surgery which were:

- PSA over 10
- more than 3 cores positive
- Gleason higher than 6

These were just my personal parameters based on my own research so you can take that for what it is worth but already you are passed 2 of those parameters (provided these results are confirmed). That being combined with the family history would seem to indicate that treatment of some sort is appropriate. I chose surgery but that was just my personal preference.
Posted 4/23/2017 8:40 PM (GMT 0)
Maybe a bit OT but I tried to compare Allen's "biases" against which treatment decisions patiens actually choose divided per risk category. This is statistics from Sweden. Is it similar in US?
For low risk and intermediate risk surgery is selected more often than radiation and the opposite for higher risks.

Treatment strategy per risk category

............................AS ......RP ....RT .....HT
very low risk .........90% ...6% ...1% ....0%
low risk ................72% ...17% ..5% ....0%
intermediate risk ...18% ...48% ..19% ..6%
localized high risk ...6% ...29% ..34% ..25%
locally advanced .....4% ...18% ..32% ..38%
regional metastases 2% ...11% ..29% ..52%
distant metastases ..2% ....2% ...4% ...88%
Posted 4/23/2017 9:15 PM (GMT 0)
Hi.. I was 5 years older and also a T2c at the time of biopsy which turned out to be a T3a after my robotic surgery. My PSA was quite low at 3.7. I thought I remember my Dr. saying I wouldn't be a candidate for the seed implants because it was on both sides, T2c. I have no regrets on surgery. Best of luck!
Posted 4/23/2017 9:44 PM (GMT 0)
I was also told by a doctor that I didn't qualify for brachytherapy since my cancer was on both sides. That turned out to be untrue, but it was a good lesson that you won't learn much about different treatments unless you talk to the doctor that actually practices that specific treatment.
Posted 4/23/2017 10:03 PM (GMT 0)
Gemlin-

Thanks for that nifty table! I once tried to post a table on this site and gave up. PDA said there is a way to do it, but it didn't seem to work for me.

In 2013, for Stage IIA (basically, intermediate risk), RT was 35%, RP was about 65%. RT was down from 54% in 2004.
/www.nature.com/pcan/journal/vaop/ncurrent/full/pcan201715a.html

Despite the high quality of evidence supporting brachy boost therapy for high risk PC, utilization dropped from 27.6% in 2004 to 10.8% in 2013.
/www.ncbi.nlm.nih.gov/pubmed/28159553

In the Capsure registry (mostly community-based), they use CAPRA scores of 0-2 (low risk), 3-5 (intermediate risk), and 6-10 (high risk).
Among low risk men in 2010-2013: AS (40%), RP (50%), RT (9%) and ADT (1%)
Among intermediate risk men: AS/WW (8%), RP (70%), RT (19%) and ADT (3%)
Among high risk men: AS/WW (3%), RP (52%), RT (20%), ADT (25%)

jamanetwork.com/journals/jama/fullarticle/2382968

Anyway you look at it, RT is vastly underutilized and RP is vastly overutilized in the US.
Posted 4/24/2017 6:52 AM (GMT 0)
Pwallace,
To answer your question....
https://www.mskcc.org/nomograms/prostate/pre-op was not accurate in my particular case. However, it only gives you a percentage of risk and you may not be lucky. With 8 cores positive I would bet the nomogram is fairly accurate...in my opinion it is a bit optimistic.
Biopsy samples are like taking pizza slices out of an oven you can't see into.
You may get cheaze slices (normal tissue) or pepperoni (cancerous).
My biopsy had 2 positive cores>after surgery pathology reported that 40% of prostate was infected....and one of my cores only had only 2%! > I'm sure one of the veterans here can elaborate.
Posted 4/24/2017 7:01 AM (GMT 0)
Pwallace,
I recorded some of my doctor visits and wrote down questions beforehand... the first time I was so blindsided I didn't retain that much information.
Posted 4/24/2017 5:09 PM (GMT 0)
Thanks, Gremlin and TA, for the charts and statistitics.

The striking thing from the Swedish and U.S. comparisons is the widespread acceptance of active surveillance as the default course of action for low risk men in Sweden. The U.S. rate is rising sharply, but still about half of where Sweden is.

IMHO, it will take re-education of our urologists, and less greed in the medical system, before we will ever see AS as the default protocol for our low risk men.
Posted 4/24/2017 5:25 PM (GMT 0)

Gear said...
Talk to as many Doc's as you can. Many times the Doctor is more important than the procedure itself.

This. My urologist and surgeon are fantastic. The first RO and MO I talked to, not so much. Fortunately, I was able to get a few more options. I am sorry for your husbands situation. Hopefully he will find the treatment that is best for him.

If you'll note on this site, as I quickly did, the stanchest opponents of surgery are those that chose not to have it. Not surprising, I guess. Personally, I have no regrets. To me, the main issues were not dealing with the side effects, it was survival....having kids, 5 and 7, being able to see them graduate HS or college, walking my daughter down the aisle, making sure my wife is set financially, etc. And honestly, you really think 2, 3 or even more years of HT plus radiation won't have any effects on a body?

Also, one thing that isn't mentioned here, if RT is your primary means of treatment, there comes a time when you pass the point of being able to have surgery. RT cooks your innards, literally, and will make subsequent surgery more risky, or eliminate the possibility of even having it. I'm more worried about what that f-ing Lupron injection I just got is going to do to me more than I was about the surgery SEs. As an example, an RO, at MD Anderson no less, advised I get a colonoscopy before RT as the scope can more easily rip/cut weakened colon tissue as a result of the RT.

But as you should take opinions on this site with a grain of salt (with a few exceptions), mine is no different. My surgery, went well, SE-wise (um, except the small piece of positive margins/extra-capsular extension). Erectile function started to return within 3 weeks, and now, near 100%, and my continence is slowly returning. I was back surfing at the 2-month mark, and exercise regularly. Not gonna kid you, it laid me out, big time. Much of the credit for recovering for SEs has to do with the experience of the surgeon I had. She is a student of Dr. Patel, and has over 1000 RA surgeries on her resume. You don't want someone practicing surgery on you. It is major, a full-on dissection, so ask them how many times they have done this specific procedure.

And, yes, keep a note book to each appt. Consultations flood you with info...its hard to keep it all straight.
Posted 4/24/2017 5:41 PM (GMT 0)
My wife and I chose RP via DaVinci, but at 65 and 62 we were not going to have anymore kids. My story IMHO is successful surgery, cancer is gone and all evidence says they got it all.
We are still sexually active, but I need help with injections. At 3 months post surgery that is about all I can expect... time will tell if I get natural ability back. I am about 85% continent and improving each day.
Just a few stories from my experience to add to your thought process:
- My dad died from PC because the doctors kept treating what they thought was chronic case of urinary tract infection. The cancer was aggressive and soon spread to the kidneys and his heart health was not good enough for surgery.
- My older brother is post surgery 1 year and doing great, fully continent, but not sexually active so didn't have nerves spared... a personal choice.
- My boss is 3 years post surgery, doctors recommended active surveillance, but he chose surgery. Post op biopsy indicated that the cancer was very aggressive, pre-op the cores indicated just the opposite.
- My son-in-law's father was diagnosed and active surveillance was what he chose, then radiation, then radio active seeds. At that point surgery was no longer an option. The cancer spread and got into the blood stream. After 9 years the battle ended with brain cancer. His wife said she would rather have him alive and having to do injections, etc.

Yours is a tough decision and a very personal one. The above is just information from my experience and why we chose surgery. There are multiple options, I hope you two chose the option that turns out to be your success story.
Posted 4/24/2017 6:31 PM (GMT 0)
wow wow wow, so much to think on. thank you ALL for chiming in - we need to hear voices from both camps.

RealisticOptimist - my husband is a surfer too, so i can only imagine how wonderful it was to get back in the water after two months out...

up4thefight - sounds like we're in the same boat & yes it is excruciating! we're trying to remain calm (we have 3 littles after all), but oh my gosh it is hard.

one thing we can't stop thinking about -- my husband is so sensitive to toxins of ANY kind, he doesn't take any medicine, never has... and he's never had any urinary or bowel irritation in his life... (well outside of the vasectomy) so we need to weigh SEs very carefully... short term vs long term... SEs he can live with & SEs that would drive him mad...
Posted 4/24/2017 6:39 PM (GMT 0)
Hi Pwallace, Sorry your here but glad you found us! I'm a new member also posting for my husband. Our cases are very similar, see my sig below. We were also unsure about surgery, there are so many pros and cons for each. Surgery worked well for my husband but only you can make the final decision. The one thing i will tell you is that we deliberated for a month, during which we got 3 opinions. Our original urologist, Radiation Oncology Chief from Memorial Sloan Kettering and a friend recommended Urologist. Our final decision was Surgery, we liked the fact that there was a final pathology detailing what was inside (no more guess work) and there was a plan b for treatment if necessary. That was OUR choice, everyone is different and your priorities may be very different.
Posted 4/24/2017 7:17 PM (GMT 0)

pwallace said...
my husband is so sensitive to toxins of ANY kind, he doesn't take any medicine, never has... and he's never had any urinary or bowel irritation in his life... (well outside of the vasectomy) so we need to weigh SEs very carefully... short term vs long term... SEs he can live with & SEs that would drive him mad...

Has he had his liver function checked?

For surgery, the major medicine would be the anesthesia. You should talk to the anesthesiologist about the risks if he has a genetic inability to detoxify anaesthetics. There are also a lot of antibiotics given. Penile rehab should start before the surgery with ED meds (e.g., Cialis, Viagra, Levitra). After the catheter comes out, if he needs it, he can start injections of trimix (alprostadil, papaverine and phentolamine) with an adrenergic medicine (e.g., Sudafed) on hand in case of priapism. Rarely, a bladder antispasmotic is given.

There is an antibiotic given when fiducials are placed. After radiation, there may be an alpha blocker (e.g., Flomax) for a few weeks. Or, he can tough it out and just wait for the symptoms to pass. I took daily low dose Cialis as a protective for 6 months, but I don't really know if it is necessary - fibrosis increases with age, so with a man your husband's age, I doubt ED would be a problem anyway. Frequent use (naturally) may be even more beneficial.

With brachytherapy, there is usually a spinal block. Some give general anesthesia as well.
Posted 4/24/2017 7:41 PM (GMT 0)
so much helpful information, Tall Allen!

do they tend to check liver function before all of these treatments, or is this something we would have to ask for ourselves?

thank you for taking the time to write all of this down. taking note of all of it.
Posted 4/24/2017 7:50 PM (GMT 0)
Since you say he has a problem detoxifying medicines, I would definitely tell his PCP about that. He may have some abnormality in his liver function or in his enzymes. It is fairly common to have small mutations in the cytochrome P450 enzymes responsible for detoxifying/metabolizing medicines. If they can identify which enzymes are aberrant, they can possibly avoid anaesthesia/medicines that are metabolized by those enzymes. If his liver is deficient, that should be looked at. There are diseases like chronic Hepatitis B that never cause acute problems, but reduce liver function and can lead to other problems eventually.
Posted 4/25/2017 4:10 AM (GMT 0)
thanks allen, he doesn't really have a problem detoxifying medicines (that we know of), he's just leans toward the sensitive side. great information to have on hand, though. thank you.

p.s. talked to our urologist tonight & cleared up some confusion re: the path report. here are updated stats:

husband Dx at 42 yrs old - 4/20/17
DRE= asymmetry, MRI= lesion, left middle
Bx: 8 of 14 pos, G7=3+4 (80%, 80%, 95%, 95%), 3+3 (45%, 35%, 35%, 15%), PNI at left base, T1c
PV: 21grams
PSA: 11/15 4.2, 8/16 4.9, 3/17 6.4
Tx: still deciding
Posted 4/25/2017 10:13 AM (GMT 0)
pwallace, glad you found us, and sorry you need to be here.

One of the most maddening things about the 'side effects' argument is that real data is maddeningly hard to come by, and even harder to interpret. Particularly when it comes to surgery, there are so many variables involved that the statistical data is almost impossible to square with individual cases.

Before I had surgery, I had to deal with this. On the one hand, I had the statistical data that suggests that half of all surgery patients have moderate to severe incontinence and ED. On the other hand, I had this statement from the surgeon: "Based on your general health, your lack of incontinence and ED issues, and the specifics of your case, I'd say you have a 90% chance of making trifecta within the first 3 months or less".

I rolled the dice, and the surgeon was correct. Why did I get that outcome? My view is that the statistics are spread across the entire spectrum of surgical skill, patient health history, surgical type, nerve removal, etc. There doesn't seem to be a chart anywhere that lets you plug in individual data and come out with a more specific projected outcome.
Posted 4/25/2017 12:17 PM (GMT 0)
halbert - I'll add yet another qualifier to your assessment about statistics. Agreed that stats are just stats, and none of us know where we will be within that cohort. Add to this the fact that most stats are not segmented by age, health status or other issues that may drive differences in outcomes. Most stats I've seen speak more to outcomes as they seem to relate to given cancer status. This makes it incredibly difficult for newly diagnosed patients to come to any comfortable conclusion in their choice of treatment.

RealisticOptimist - While I'll agree that there may seem to be a bias against surgery here, the "here" has to be defined in the context of who is participating in the forum at the time. I think, if we could gather the stats of all members, that the distribution of treatment choices might be more balanced than you suspect. I just think that we "post toasties" are more outspoken, as we believe that in many cases the disease control and side effects profiles are as good or better than surgery - depending upon the patient's pathology and personal preferences. We do not believe that surgery is a "bad" choice, but we DO believe that it should not be considered the ONLY choice. Nothing personal at all here, just a belief that patients owe it to themselves to consider all applicable treatment options and make the choice that is right for them. If you want to see a bias in action, go over to that "other" site and virtually all you see is comments promoting surgery as the "gold standard."
Posted 4/25/2017 3:05 PM (GMT 0)
pwallace, welcome to the club no man wants to join, and the club no wife/SO wants to have to join either. That said, this site has a wealth of information on it, and with TA and many others actively posting, some of whom have an encyclopedic knowledge about PCa, you are both in good hands! cool

I too have a strong family history of PCa and had HDR-BT treatment in Feb 2016 after years of tracking low grade PCa under AS. My dad had RP at Johns Hopkins by Dr. Partin (personally trained by Dr. Walsh). His older brother had LDR-BT and EBRT way back in the late 1990's. Given your DH's (Darling Husband) family history, he is wise to be doing his homework. Since I can't add any more value on the treatment front than the many others who have already posted, I figured I would take a moment to provide some high level bullet point advice that is embedded in all of the other posts so far, but it might help to have it all in one place:

  • LOVE is spelled TIME. You both have time to invest - numbered in months not weeks/days to be clear - to ultimately come to a decision on the best treatment protocol for your husband.
  • Document everything that you can over time to help drive toward a treatment decision. Create a matrix that documents and guides your respective decision making processes and how important each data point is for each of you (cure rates, impotence, incontinence, etc.).
  • Spending TIME on evaluating treatment protocols and coming to a decision is the most difficult part of the entire process. It is perfectly normal to experience wide ranging emotions throughout this part of the process - especially early on - be patient with one another intentionally.
  • There is no one right answer when choosing a treatment protocol - difficult I know - but true
  • Coming to a treatment decision is a deeply personal process regardless of whatever statistical data points are at your disposal.
  • While relatives and friends may seem to want to help - oftentimes they don't really help because they are too invested emotionally to provide objective advice.
  • Do your best to remove emotions from the decision making process whenever possible - yes, this is very difficult - but it does become easier if you are following bullet point one and take the time necessary to do research and document your decision making process.
  • The amount of information and data out there is beyond comprehension and can be overwhelming to sift through. Use HW as a sounding board while going through this process - many here have been through it all and are on the other side - we're all here to help in any way that we can! cool
  • Urologists are surgeons - 90%+ of the time we're referred to urologists when an abnormal PSA blood test result occurs - most urologists will recommend surgery - if all you have is a hammer...
  • It's up to you (unless you happen to get in front of the 10% of urology practices that are multi-disciplinary and will have you consult with RO's, MO's, etc in addition to the uro) pursue non-uro treatment protocols for the most part. That's why you will see many here recommend getting consultations with oncologists to cover all bases.


All the best as you navigate this journey.
Posted 4/25/2017 4:59 PM (GMT 0)
also, having been on this forum for years most of the regret and serious SEs I have seen are from the surgery camp. if there is an advantage to surgery in most cases I sure don't see it, unless you buy into the myths and half-truths perpetuated by the prostate snatchers.

ed
Posted 4/25/2017 6:09 PM (GMT 0)
Scholz is great, can't beat his knowledge or experience. Heads above any of the other 6 doctors that treated my PC.
He is biased against surgery because of all the side effects he has seen in his 30 years of seeing PC patients, as he deals mostly with advanced patients who failed surgery. This gives him a perspective that other PC doctors don' have. He is upfront and open about his bias.
Your husband definitely needs treatment, but there are other treatment options that are more effective than surgery with much less side effect risks that you should investigate.
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