Torn between treatment options

Hello All,

I'm at the two+ week mark and have been educating myself pretty aggressively. I've read a lot of Dr. Walsh's book, Surviving Prostatw Cancer) and have been reading selective literature from the internet. The journey picks up steam tomorrow when I meet with the surgeon. My Urologist (the one who told me essentially nothing except I had PCa) referred me to him so I'm starting the serious conversations there.

As many, if not all, of you have experienced, I am torn about my treatment options but that decision may be made for me. Given the busy lifestyle we live (3 active kids, working wife, demanding job, etc) I considered Brachytherapy because of the impressive "cure" rates, quick recovery time, and arguably, less risk of the loss of continence and potency. The disadvantage is that you don't get to dissect the prostate to determine the true extent of the disease but with the cures rates I've seen with Brachytherapy, that's less of a concern. Problem is, I already have some urinary flow restriction and hesitance issues. They have never been more than a minor inconvenience but could be a factor. I have never had urgency or frequency issues though. The literature says this issue may disqualify me from Brachytherapy because the therapy could exasperate my pre-existing urinary flow problems.

At the end of the day, surgery scares the bejesus out of me and I have been looking for a way around it. Watching me recover from surgery would probably scare my kids terribly and would put additional stress on my wife too. I know these are trivial things to consider when we are talking about potentially life saving cancer treatment. That should be the #1 priority, right?

Any thoughts appreciated.

Thanks to all, for all you do.

John

Age 49
PSA 6.5
Weight - 45gm
12 core Bx - 2 pos, 1%, 10%, both right side, PIN on left
Both pos cores G3+3=6
DRE neg
No additional tests yet

John,
Here's the tough part for you - either surgery or Brachy is going to work for you. With your numbers I'd think you're a good candidate for Brachy.

At some point it is just a guessing game with probabilities and unknowable factors. After you see the surgeon, get over to the Brachy people both are likely to say their treatment will work for you.

You comfort level with one treatment over another is a factor too.

Let us know what the surgeon says.
Andrew

Coming from someone who had surgery my 4 young children were OK with my recovery. They actually enjoyed walking with around the block once i got home after the surgery. I am very happy with my choice of surgery, have side effects but as you stated my #1 concern was a cure.

Two weeks to the day since my surgery, and side effects haven't been bad. First day back at work and feeling pretty good. Should you decide on surgery, be aware of the potential side effects, but remember that each person's journey is different.

There is a med in trials named NX-1207.
It is supposed to help with BPH and in being also trialed against early prostate cancer.
There is also Targeted Focal Therapy using lasers or freezing.
These would be options between AS and primary treatment.
Good luck.

Charliehorse, the BT seems to be a good fit for you and your concerns, tho I am not familiar with how it would effect your previous urinary problems. To try and allay your concern with surgery, I can only say I was out of the hospital 54 hours after surgery and walked 2 mile back to our apt, with my wife. I am a very fit man however, not sure where you fit in that spectrum. The recovery had its ups and downs, but I got " lucky " ,in that my postop pathology show a more aggressive cancer and I just happened to make a good call. The prostate needed to come out. The recovery is nothing that would scare your kids , even if they are very young. They will remember a Dad, that was sick, but persevered, stayed strong and not only survived but thrived. I'd say thats a pretty good life lesson for anyone regardless of age. Its a season, you are in, there are many more seasons of a varying nature in LIfe. Whatever treatment you get, have some one experienced in that treatment, very important.

My hubby did surgery. G 7 4+3 downgraded after surgery to 3+ 4. He did amazingly well with no after affects no pain , now pees great
And back to normal Davinci was 02/20/13. As far as the kids are concerned they will do fine. I have e grandkids now 16 and 11 an there dad was diagnosed with stage 4 colon cancer and they have done wll with no affects and understand they will probably lose their dad to it. Get r done. Good luck

John-

I had surgery less than 3 weeks ago. Age 41. 5 kids (ages 6 to 15). Very busy life/career.

I was also concerned about the impact that my surgery would have on my wife and kids.

My wife handled the whole thing well, because I stayed calm so she was able to stay calm. She also saw that even a few hours after surgery that I was doing well and was back to my usual self in many respects.

We were extra careful to shield our kids from knowing what was going on. We didn't tell them anything before the surgery. My wife told them that I had surgery when they got home from school. She told them that the surgery was "to fix something that was wrong in Daddy's abdomen", and that "Daddy is fine and will be home tomorrow". I spoke to them on the phone a few hours later to reassure them that I was fine and that the doctor only needed to make a few small holes and that I felt good.

When I came home from the hospital, I was moving/eating a bit differently for a few days than I had been pre-surgery, which my kids clearly observed. My kids never knew I had a catheter (the leg bag was covered by my pants, and they weren't allowed in my bedroom while I was in bed at night because the night bag was visible), because they would be scared if they knew that there was a tube connected to my body.

By the second week, they cath was out and I was the "same old Dad" that they were used to, aside from not lifting heavy things. I stayed home from work that week, so I drove them to school, and we spent lots of time taking long/fast walks as we often do on weekends, did homework together, etc.

Now, in the 3rd week, the whole thing is behind us. (Of course, they don't know that I have minor dribbles and just started taking Cialis for ED rehab.) They still have no idea I had cancer, and I see no particular reason to tell them until my boys turn 30 and have their first PSA test.

Surgery is indeed scary. However, LARP was very tolerable, which made it easy for my wife to get through the situation and made it easy to keep the the impact on our kids to a minimum.

Best of luck in your decision.

-Gedman

Hello again John,

Decisions, decisions, that's part of this wonderful world we've found ourselves in!  I'll lend some input to hopefully add to your research towards making your decision:

Regarding AS - I would look into seeing a specialist in an Active Surveillance protocol to weigh in on whether it is prudent for you to consider AS or seek treatment, again the key here is talking to an expert in the field of AS about all of your PCa related stats.

You mention in your first post on this thread that "The literature says this issue may disqualify me from Brachytherapy because the therapy could exasperate my pre-existing urinary flow problems."  There is another brother out here that is in a similar situation as you are (jym62), both from trying to decide on AS or not, and also with respect to pre-existing urinary concerns and treatment options.  I'll repost here some of what I replied to him about this topic:

"IF you decide on treatment, man, here we go again - you've seen everyone weighing in (primarily) based on their own experience - which is good and helpful, right up to the point where someone starts to "push" their treatment approach on you.  I'm not going to do that, but as I have done in the past feel compelled to provide additional data, statistics and findings that don't necessarily go along with what some have stated - specifically about surgery being better than brachy for continence issues.
 
Before I do I would strongly suggest that your existing condition, feelings & thoughts with respect to urinary issues should absolutely be weighed in as you continue down this path. . . . .
 
To start here's a link to a graph from a study that looked into post-treatment side effects/continency after RP nerve sparing, RP non-nerve sparing, LDR Brachy and EBRT:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472866/figure/F5/

The next link is a study on "Urinary Incontinence Following Treatment of Localized Prostate Cancer" by Philippe Grise, MD, and Scott Thurman, MD, and I think provides a good overview re your concerns:

http://hlmcc.org/CCJRoot/v8n6/pdf/532.pdf

There's just tons more out there available including articles, reports, data, results of trials and so on - and unfortunately as is the case with this darn beast, nothing is definitive - I firmly believe it all boils down to garnering as much as you can and then making your decision."

Best of luck to you as you continue down the path - stay positive about this as with your numbers you'll be fine!

Hi John,

I won't venture to provide my opinion on your treatment since you've already received lots of advice there. But I will recommend that you find an oncologist that specializes in prostate cancer and can provide you information about all of the treatment options mentioned here. Such an oncologist can help you stage your disease and provided unbiased advice as to your treatment options.

Finding such an oncologist was by far the best thing that I did on my journey. Good luck and please keep us posted!

Michael

John,
Look into Proton Therapy, it was my treatment of choice. I had almost no side effects, and the side effects I had were most probably a result of the adjunct hormone deprivation therapy. It might not be right for you, but at least look into it. I am pretty young too and the quality of life issues were huge in my decision. If you are considering any form of external beam radiation, consider it. Due to a principle of physics called Bragg's Peak, protons can be controlled to deliver almost all of their radiation on target with very little pass through dosage. Hence, less side effects.
Just my opinion, you have a lot of time to do your research, so be your own advocate.

Regards,
Kris

www.floridaproton.org/news/uf-proton-therapy-institute-survival-rates-and-quality-life-improve-prostate-cancer-patients

Hi Charlie,

As An38 mentioned, your urinary problems are probably not going to get any better. I'll try to make a long story short as I mention that our situations are very similar.

I also was diagnosed with Gleason 3+3. Fortunately, my post-op pathology report confirmed the 3+3 and there was nothing except for the one small tumor. about 28% of the time, however, post-op pathology shows the Gleason score was actually higher and the tumor volume more extensive than suggested by the biopsy.

So, while AS might seem a good idea based on a person's biopsy report, there still is NO way to know if it truly is something that one would want to just keep a watch on. You are very wise for realizing this and it is something for you to consider in making your decision.

Also, as with you, my prostate was very large. Yours is about twice the normal size -- mine was about FOUR TIMES normal size (over 98 grams). And my urination problems were getting worse & worse. So, when I was diagnosed, my decision was easy to opt for surgery.

To be absolutely certain, I went to Mayo Clinic for a second opinion. I was lucky in that I am already an annual patient there for general physicals and had already been scheduled for my 2011 physical when diagnosed by my local uro.

I did what YOU should also do -- I met with one of their radiation oncologists. He told me that seeds would not be ideal in my case because of the size of the prostate. Your situation may not apply here, but my prostate was so large that the radiation guy said parts of such an enlarged prostate tend to push beneath bony structures, etc., as it expands.

As a result, he said they probably would not be able to angle the seeding instrument to every corner of the prostate that would be necessary. He did, however, say that EBR (external beam radiation) could cure me. But he also cautioned that, while it could cure the cancer, I would still be left with the ever growing urination problems.

So the radiation oncologist actually advised me to have surgery instead of radiation.

I then saw a Mayo urologist who also said that prostates of that size often twist & deform and encroach into the bladder. He agreed that my only logical course of action was, indeed, to make a date with Mr da Vinci. He also told me that he expected to cure me with the surgery.

So, after taking a few weeks to decide if I wanted the surgery at home or at Mayo, I opted to return to Mayo and had the surgery.

1-1/2 years later, my sexual function is hopefully starting to get stronger and I have been totally continent since just a few weeks after the surgery. And my PSAs have been zero since the surgery.

And I now urinate like a firehose with no problems at all.

So, for what it's worth, this is my story. I hope it might be of some help as you consider your course of action.

In any case, here's hoping you get a complete cure!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.

Surgery after radiation is very rare and done by very few surgeons , do you know of any, fauntleroy. Since it is rare and seems to be out of the mainstay of treatment and you mentioned that it was an option, as if it was as normal as radiation after surgery,It ain't. Please share, and I say this in good faith, what information do you have on it , other than you read it somewhere. regards, smartypants, er, eh, I mean logo…...