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Posted 4/16/2013 7:01 PM (GMT 0)

Wow, I've been reading some post and now I'm really concerned.The doc seems to think it is time for me to come off active surveillance. I had been dealing with this pretty good untill now. I just can't make a decision or at least one I can stick with. I'm back and forth between the seeds and surgery countless times in a day. I would choose the seeds in a heartbeat if I hadn't already experienced acute urinary retention 10 years ago when I had a ureterscopy to remove a stuck kidney stone. I presently have a somwhat enlarged prostate of 45 cc down from 72 cc after meds for a year. My flow is not that great especially at night, so the seeds really scare me because of the urinary retention fear. I have read a lot of what you guys have been through and it just adds to my indecision. I'm so scared of the surgery and all that may go with it, but everything I read about the seeds seems to point to a weaker stream, which can be a problem if you already have one.

  Opinions will be greatly appreciated.

Posted 4/16/2013 7:06 PM (GMT 0)
I've been on HT for six years with no flow probs but I sure wouldn't recommend it over surgery. This seems to be one of those things that you'll have to research thoroughly and this forum is a good start.
Posted 4/16/2013 7:55 PM (GMT 0)
You are in a similar situation to mine in that I had an enlarged prostate (it was 98 grams -- about 4x normal size). As time went on I was having terrible urination problems that were growing worse & worse.

So when PC came knocking on my door, it was almost a blessing. My choice of da Vinci was virtually made for me by virtue of the BPH.

So now I am (knocking on wood) cancer free and can urinate like a firehose -- just as when I was a teen.

You will probably eventually face similar urination problems -- and radiation cannot really cure that. The radiation oncologist I consulted with actually recommended that I have surgery simply to kill both birds with one stone.

So, for my money, you should make a date with "Mr da Vinci." If you do, be certain that the surgeon has performed a MINIMUM of 300 because there is a long learning curve involved with it.

Place yourself in the hands of a HIGHLY SKILLED, EXPERIENCED surgeon & you should be just fine.

Good luck!
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.
Posted 4/16/2013 7:56 PM (GMT 0)
Have you been reading any books on prostate cancer yet? My dad read The Decision by Dr. John McHugh and that really helped him. He decided on having surgery versus the seeds. Like you, he was worried about whether doing radiation or seeds might worsen any restriction of urine flow. My dad is two weeks post op and doing well, although I have to say that reading about post-surgical incontinence, and then actually having to go through it are two different things. The worrying about when/whether or not it will get better is weighing on his mind. I wish you luck in your decision. My advice is to keep reading, keep weighing opinions and eventually something will hopefully just feel right to you. It may also help to visit a urologist to talk about surgery and then visit someone who specializes in the seeds and hear what they have to say as well. It may also help you to make a chart of pros and cons as they relate to you as an individual and then you have to decide which things are more important to you. For my dad, he is in his 70s and he was just really worried about making sure that he could keep urine flowing out of his body. He just could not entertain the thought of not being able to pass urine and so that was something that for him would be rated as really important. For someone else they might say that thought is not very important to them.

Just try to sort out what matters to you and maybe writing it down might help you to think about it both objectively, and subjectively.
Posted 4/16/2013 8:24 PM (GMT 0)
Thanks to each of you for your prompt replies. Good luck to all.

Chuck, it just kind of dawned on me earlier today that surgery might be the way to go just to get rid of it and all its problems, hopefully. Of course that is my thinking today.

Yes I have been reading, it becomes mind boggling. Then I stumbled on this site and I thought what better place for info than from folks dealing with it themselves.

Thanks again!

Posted 4/16/2013 8:36 PM (GMT 0)
Why has the doctor advised you to come off AS. Was it the slight rise in psa or the additional 2 cores?
It sure looks to me that your cancer is indolent. Even the psa number, tho affected by the pca, could be that high mainly from the BPH or whatever that problem you've had with prostate. This is pure speculation and am out of my pay grade here. You could find an doctor that has mucho experience in AS or make the call and go for a primary treatment. My sense about PCA is that it does in fact migrate to a higher gleason, not to scare you, just giving my opinion. You could probably get an outright cure right now and be done with it, but side effects are a reality, tho you should remember that a forum will attract a skewed result of side effects, due to those without them are going about doing other things. Incontenence can be avoided by doing core exercises, kegals and get a surgeon that is a skilled seamstress among other things. not up on S/E on other primary treatments
Posted 4/16/2013 8:36 PM (GMT 0)
If you should decide to do brachytherapy they'll give you something to help with urine flow. I take Rapaflo and have no issues regarding urination.

Whatever you decide good luck.
Posted 4/16/2013 9:12 PM (GMT 0)
I don't see any reason for you to come off AS yet. I know some doctors say 3 positive cores at most, but that is generally with a 12-core biopsy. I think if they had taken 24 cores to begin with, the same 3 areas might have been positive. With less than 5% involvement and Gleason 3+3 and virtually no change in PSA, your PC seems to be both insignificant and indolent. You may know that many AS programs do not recommend coming off AS until there is some G4 or PSADT<3 years - neither is the case with you.

If you feel you can't stick with AS any longer, have you considered SBRT? Little risk of urinary retention or any serious urinary, rectal or sexual problems, and recently published 5-yr results show freedom from PSA recurrence of 95% for low risk cases. SE profile much better than seeds.
Posted 4/16/2013 9:32 PM (GMT 0)
I think you could stay on AS for more years with those stats.

You might also think about Targeted Focal Therapy.
Also in clinical trials: NX-1207 injection Phase II for early prostate cancer.\
Good luck.
Posted 4/16/2013 9:34 PM (GMT 0)
Depends why you are having flow problems. You can have an enlarged prostate without flow issues. You need to determine what is causing it.

For me, after 3 months of HT and 30 sessions of External beam radiation, my prostate went from 65cc down to 29cc, however I still had flow problems. I have(had) an anatomical bulge impinging on the urethra, the shrinkage didn't change that.

I had testing done to determined that. I just had a green light laser procedure to remove the offending section. They were able to do it after radiation and prior to seeding because it was a small obstruction. Like getting a trim instead of a full haircut.

Seeds to follow in 4 weeks.

If you want any details just ask

I initially had severe retention problems after the biopsy, so I didn't think I was able to have this type of therapy. I held out thinking the shrinkage would solve it. The testing was worse than the procedure, as I was under a general while during the test I was fully awake and sitting upright

The party continues
Posted 4/16/2013 9:40 PM (GMT 0)
logoslidat, yes that is my understanding the two additional cores.

Buddy Blank, yes I'm aware of Rapaflow and Flowmax, but fortunately for you; you have a tiny prostate. If only I could be sure it could keep me from locking up, thats one of my big fears is having to deal with caths. and not knowing for how long.

Posted 4/16/2013 10:00 PM (GMT 0)
Fauntleroy, what kind of test was that? I didn't have any issues even after the 24 core biopsy, but I understand the radiation has an inflammatory effect.

RobertC/Tall Allen, I guess I could stay on AS a while longer, but you see a lot of pathology that guys report on that was worse than reported by biopsy. I'm so confused by it all.

 Thanks again for everyones help!

 

Posted 4/16/2013 11:35 PM (GMT 0)
I have to agree with Buddy. Certainly I don't know why your flow is restricted, but as for the enlarged prostate, I was given meds (can't think of the name) to shrink the prostate before seeding. It worked fine. After the procedure, I took Flomax (actually the generic form) for six months or so to improve flow. That too worked fine. If you must come off of AS, don't think you are not a candidate for brachy until such time as your oncologist says so.
God Bless
Posted 4/17/2013 12:08 AM (GMT 0)
I think you are right to have doubts about whether the cancer volume and grade are as low as your biopsy indicates. However, 24 cores is pretty close to a saturation biopsy (usually 30+) -- did they sample from the anterior and the transition zone? If so, there's little danger that there would be a further upgrade if you had an RP. If you feel you need more confidence, you can try some of the state-of-the-science imaging. Multiparametric 3T endorectal-coil MRI fused with an US can help locate some very small bits of cancer in the hands of an experienced radiologist, so can some of the enhanced ultrasound techniques.

Targeted Biopsy in the Detection of Prostate Cancer using an Office-Based MR-US Fusion Device
CONTEMPORARY IMAGE-GUIDED TARGETED PROSTATE BIOPSY BETTER CHARACTERIZES CANCER VOLUME, GLEASON GRADE AND ITS 3D location COMPARED TO SYSTEMATIC BIOPSY
Contrast-Enhanced Ultrasound Imaging of Prostate Cancer

I agree with robertC that targeted focal therapy may be a good option, provided that you use one of the advanced imaging options and that your positive cores are in the same area.

You're right that there will be some inflammation after any kind of radiation. Knowing that, I would take an NSAID and Rapaflo prophylactically. It's always better to prevent these things than to try to treat them after the inflammatory cascade begins.

HDR brachy (and SBRT) has less urinary SEs than LDR brachy:
High dose rate brachytherapy as prostate cancer monotherapy reduces toxicity compared to low dose rate palladium seeds.
Posted 4/17/2013 1:20 AM (GMT 0)
bluebird 123: Yes that seems strange to go from a borderline psa to a bladder test, was he having any urinary issues at the time? I know how you felt about the retention, it's been a little over 10 years since I had my issue but I remember it well. It's rare but I think long term retention is a possibility. I'm so afraid of surgery that I wonder if I could learn to cath myself. I've been told no surgical intervention for one year after seeds. Thats a long time if you happen to be the one with the problem. I'm sure you two are happy to have it behind you.

Gop: I keep telling myself because of my past experience,my fear and my reading. Isn't there some kind of pretesting that would qualify you or not for the seeds?

Tall Allen: That is a concern because  the three positive cores are on both sides. I'm not sure what the transition zone is?

  Thanks everyone!

Posted 4/17/2013 1:38 AM (GMT 0)
I would be inclined to continue AS, if I were you, as you still have a minimal amount of the lowest level of PC based on this last biopsy.

As far as treatment, I had lots of stricture/retention problems. Spent over 1 1/2 years on catheters. When my surgery failed, and I had to undergo salvage radiation, because radiation is known to call stricture issues, it was decided that I would have a Suprapubic cath inserted for the duration of the radiation, since surgery would be impossible. As it were, the radiation was administered wrong, and I was on that cath for 51 weeks straight, until I finally had to have my bladder by-passed with Urostomy surgery. Since then, I pee out of a hole in my side into a plastic bag. No fun, trust me.

Self-cathing isn't for anyone, and it can be very stressful way of life. My uro would never allow me to self cath as he was too afraid I might do further damage to an already very damaged bladder neck.

If you don't have to be treated now, then that is your best answer. Surgery does have it's own risks and side effects, but so does any form of radiation. I found that radiation oncologist like to downplay side effects, short and long term with radiation. You either pay now, up front - with surgery, and hope for the best, or you pay later - with radiation.

After what I have been through, which has left me 100% disabled for life, and assuming I had your stats, I would still be on AS. Just my take.

Good luck, I know there is no easy answer, and you alone have to make it eventually.

david in sc
Posted 4/17/2013 2:29 AM (GMT 0)
jym62,

My husband was not having any urinary issues at the time. He went to a urologist who was not board certified, was incompetent (told him not to go to the hospital when his fever was 104), dishonest (tried to sell him on a surgery he did not need), and had a non-sterile office where my husband got infected. We learned about the first urologist's poor reputation from my husband's new urologist, who saved his life. After this incident my mother-in-law told me to never let my husband go to the doctor alone again, so I became involved in his medical care.

My husband wanted to do AS but he was not a candidate. We were afraid that the inflammation in his prostate would be aggravated by radiation. My husband decided on surgery, but we were scared before his operation. At this point, over 5 months after surgery, while we are dealing with side effects, that anxiety of decision making is long over.

Good luck.
Posted 4/17/2013 3:09 AM (GMT 0)
Purgatory: So sorry to read about your situation, thanks for sharing. You have certainly been through heck. I wish you the best.

bluebird123: Yes, I'm especially fearfull of ebrt, I have a problem getting dental xrays as often as they would like.

Posted 4/17/2013 3:58 AM (GMT 0)
As a man who is on a protocol for Active Surveillance for the past four years, and has studied this extensively, pleaae be advised that your cancer is most likely indolent, not likely to spread.

I suggest that you see a specialist in the Active Surveillance protocol to manage your case. There are experts at the major medical centers such as Johns Hopkins, etc.

The criteria for low low expectent progressivion of the disease is ( for a 12 core biopsy) less than 2 cores with less than 50 percent involvement each, PSA less than 10. PSA/prostate volume less than 0.15.

Additionally your PSA is rising at a very slow rate.

I do not understand why your doctor would recommend your doing an "active" treatment and possibly suffering the negative consequences of the treatment.

The article by this expert's expert will be of value to you

Dec 2012 Interview with Dr. Klotz http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=799211&sk=&date=&pageid=7
Posted 4/17/2013 4:40 AM (GMT 0)

jym62 said...
Thanks to each of you for your prompt replies. Good luck to all.Chuck, it just kind of dawned on me earlier today that surgery might be the way to go just to get rid of it and all its problems, hopefully. Of course that is my thinking today.
Yes I have been reading, it becomes mind boggling. Then I stumbled on this site and I thought what better place for info than from folks dealing with it themselves.

Thanks again!

Hopefully you are not having any serious urination problems at this time. But with a case of BPH, it will very likely become a big problem in the future. It certainly won't get any better.

You're probably on the borderline regarding continued AS or treatment. In my case, there were only 3 cores out of 20 that were positive. The local urologist's biopsy report said one core was only 5%, one was 15% and one was 20%. The uro told me that he would tend to have recommended AS for me except that it was 3 cores that were positive -- in which case he believed in "aggressive" treatment.

I immediately (though very scared) agreed with him. And, with the urination problems, I knew that da Vinci was the only way for me to go.

I would probably have gone along with AS if he had recommended it -- if there had been only 2 or less positive cores. But, at the same time, there is NO way to really know what is happening within the prostate unless it is removed & placed under a pathologist's microscope.

about 28% of the time, the Gleason score is upgraded from the biopsy estimate -- and sometimes the cancer is found to be much more extensive within the prostate than indicated by the biopsy. So it is kind of a roll of the dice to go with AS.

In any case, that was my own situation, for whatever it is worth. :)

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.

Post Edited (HighlanderCFH) : 4/16/2013 10:50:47 PM (GMT-6)

Posted 4/17/2013 5:27 AM (GMT 0)
P.S.
Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar
Posted 4/17/2013 10:55 AM (GMT 0)
Isn't there some kind of pretesting that would qualify you or not for the seeds?

I don't think there is anything definitive. Like so many things with PC, there is lots of ambiguity. Just please do not do yourself a disservice by allowing a uro or a surgeon tell you that you are not a candidate for brachy.
Posted 4/17/2013 1:44 PM (GMT 0)
Hi jym, and welcome!  As you have seen, this is a great place to come for insight, experience and opinions on the whole topic of PCa.  I'll add to that as well, and do so hopefully more from a perspective of providing information and data to help you make your own decision - as opposed to "telling you" what you should do. 

IMHO - NO ONE - including those of us that have gone down this path, nor the various medical professionals, should make that decision - other than yourself, i.e. being your own health care advocate.  Meeting with medical professionals and hearing from those that have "been there, done that" is certainly essential towards providing you with the information and knowledge you need - but again, this should be your decision. . . .

O.K., so then I'll simply add what I can to this party.  With respect to continuing on with AS or not - I would wholeheartedly agree with what "hopefull" said about seeing a specialist in an Active Surveillance protocol to weigh in on whether it is prudent to continue on with AS or seek treatment.  Yours certainly seems to be indolent at this point, so I think following up would be a good thing to do.

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 as I mentioned above 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 feel compelled to say that your existing condition/opinion & 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.

My very best to you.

Peace........
Posted 4/17/2013 1:51 PM (GMT 0)
Man, if your doctors are telling you to come off AS, I'd listen to them, inquire further through them, and perhaps contact an oncologist with the same questions and even a bonafide expert on AS. I wouldn't rely on what folks on here say vis-a-vis staying on AS against moving on to some form of treatment. They certainly cannot know what you and your doctors know. Personal bias comes out in situations like that and we should never think that we can replace medical professionals.
Posted 4/17/2013 2:01 PM (GMT 0)
As Tall Alan suggested, also take a look at High Dose Rate brachytherapy.  Unlike seeds the radiation is not left in the body so the side effects are less.   It also works better on large prostates and since the radiation delivery is more conformal to the cancer it can be more targeted than seeds.   Check the website www.cetmc.com by Dr Jeffrey Demanes the father or HDR and head of the radiation at UCLA Med Center.   I used HDR successfully.

You can also take Jalyn which is a combination of Avodart and Flomax.   This will shrink your prostate and keep the urine flow going.   My understanding is that the combination pill is more effective than taking them separately.   I have been on Jalyn for 1&1/2 years with no side effects.

The transition zone is in the center of the prostate surrounding the urethea.  Standard biopsies generally miss this area so certain scans like the color dopler are used.

I would look at surgery to correct an enlarged prostate as certainly last resort.   Do not underestimate the damage that any surgery does.   The side effects are significant and usually permanent.   My uro only does prostate work.   He prides himself ad being very good with the cancer side and even better with the enlarged prostate treatment.   He has peopoe from all over the country using him for enlargement probles.   He has mentioned that he does not remove the prostat due to enlargement because the surgical risks and side effects.

 

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