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Prostate cancer diagnosis

Pawpawbg
Posts: 1
Joined: Mar 2018

Newly diagnosed prostate cancer. 54yr old healthy male

3+4 and 13.5 PSA.  Prefer radiation due to side effects of surgery .Thoughts

 

 

 

 

Old Salt
Posts: 720
Joined: Aug 2014

Based on the data provided, radiotherapy does appear to be an option. But it would be good to have more info regarding the biopsy and other relevant health issues. I am sure that others will chime in once we have those data.

Magicsparkes's picture
Magicsparkes
Posts: 17
Joined: Mar 2018

Hi Pawpabg,

Surgery may be the right treatment for you, but not necessarily. Laser ablation worked well for me but admittedly it is not a silver bullet treatment for all cases of prostate cancer. Still, you should check it out - google Prostate Laser Center in Houston (Dr. Ara Karamanian).  Admittedly, I drank the Koolaid, but I am now a cancer survivor. I just honestly believe you owe it to yourself to turn over as many stones as you can prior to committing to surgery ...

Peace and blessings to you and yours!

Doug

Old Salt
Posts: 720
Joined: Aug 2014

Provide evidence that the procedure worked well. Feeling good right after the procedure is great, but doesn't prove that the cancer was totally eradicated. 

I hate to put a damper on your enthusiasm, but success needs to be ascertained at one-year intervals for at least five years.   

Magicsparkes's picture
Magicsparkes
Posts: 17
Joined: Mar 2018

Well, the ablation destroyed the tissue. I saw both the pre and post MRI. I guess you and I have nothing to talk about for another five years. I'm sorry, what insurance company do you represent again?

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I hope that the targete procedure that you had will be successful for you, however since prostate cancer can be mutifocal, the cancer can be elsewhere in the prostate, , since the  T3 MRI image is not able to detect micro cancers.

If any more cancer is found during future review, will the facility re-laser the prostate, without additional cost?

Magicsparkes's picture
Magicsparkes
Posts: 17
Joined: Mar 2018

Aloha Hopeful,

I can have the procedure repeated, but there is a cost associated as insurance does not yet cover Focal Laser Ablation, (a repeated treatment is about the price of a good used car). Assuming the cancer has not spread, I could always fall back on the Da Vinci method and have a prostatectomy. So I have not lost anything except the visible cancer in the T3 MRI image. Should the cancer return, (I'll have annual T3 MRI and other work) my insurance will cover the 135k prostatectomy cost. Ah, but then again, so many of my doctors have been forthcoming and have said in no uncertain terms, "For every 37 men treated for prostate cancer only one life is saved." In other words, they don't have the science or know how to determine if the prostate cancer is even remotely aggressive. Therefore, to be safe, they tell men it is best to not take any chances. They encourage aggressive treatment. The message is loud and clear, It is better to have the prostate removed and just live with the consequences than to risk death by prostate related cancer. Maybe so, but I know I've bought myself at least another five years and then Brachy or radiation or some other therapy might be my best bet ... or maybe I'll live without a reoccurance and pass away from other causes. PC is notorious for growing slowly and the odds are in my favor - especially with regular / annual check ups! The point is, I made the best decision having the laser ablation. All men with PC should look at it and weigh all their options before making any formal decision. 

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RobLee
Posts: 259
Joined: Feb 2017

Pawpaw (MI?) - Do not dismiss surgery. It does have advantages over radiation, which by the way does have side effects also.  Generally - and I repeat generally, surgery is the quickest and most thorough way to address the cancer for younger men, those under 70. Generally. I do have to repeat that because any statement regarding "historically conventional thinking" on the matter is always subject to refute. This is the internet after all.

Your grade 4 component and elevated PSA would indicate that you should preceed with treatment in the near future.  Often a biopsy will miss higher grade tumors, so there may be more in there than is apparent.  In surgery your prostate will be removed and the gland and surrounding tissues will be carefully examined by your surgeon and pathologist(s). The true nature of your cancer will be identified and further treatment may be required. Pathologic upstaging is not uncommon.  Most side effects are immediate and recovery proceeds over the following months and typically are fully resolved within the first year.  ED is the most lasting SE and may last years.  There is also a 5% possibility of urinary incontinence.  The objectives are 1) cure the cancer 2) regain urinary continence and 3) redevelop sexual function - in that order.

Numerous forms of radiation therapy exist, and more are being developed constantly.  The most common is IMRT and generally requires two months of daily treatment. Side effects are cumulative and become worse with time. Some late radiation toxicity may not become apparent until more than a decade later.  Radiation is administered based upon external scans.  The treated tissue remains in your body.  It does affect sexual and urinary function to some extent, so for example if you tend to have frequent prostatitis the radiation will not make that any better. Your PSA will gradually decline until it reaches a nadir over the years following radiation.

Adjuvant or salvage radiation may be required even after surgery if your pathology reveals higher grade or more extensive cancer.  Options for salvage following radiation are generally very limited.  Radiation is often chosen by older men who may have other health conditions that might preclude surgery. The cutoff is generally age 70, though there are exceptions.  You are a very young man, and understandably loss of sexual prowess may be a major concern. However you should also give thought to the strong likelihood that you will live an another thirty years or so with your pelvic organs having been radiated.

All forms of treatment have side effects.

 

Steve1961
Posts: 235
Joined: Dec 2017

how do u know that that often they miss higher grade tumors in biopsies ..reallly says who you...quit scaring people like you scared me a while back ...u don’t know what the hell you are talking about 

Old Salt
Posts: 720
Joined: Aug 2014

You are wrong.

A biopsy is like a needle in a haystack (usually only twelve samples). It's not uncommon to miss a cancerous spot which may be a higher grade one.

And it's against forum policy, and plain impolite, to state that a member doesn't know what he is talking about. 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Honestly, I don't remember what I might have said that scared you.  I tried to read your blog here that you mentioned below, but it is empty.

I believe that patients should be well informed. My doctor told me very little. He never mentioned cancer. I only know what I am talking about because I have lived it... four years so far. More actually. It is hard to not feel resentful when I think back on it. And I don't want others to end up that way, so I try to tell them what I have learned, the hard way.

Again, I am sorry and I hope your experience is much better than mine has been.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Steve1961,

It is simply a statement of fact that biopsies fairly commonly miss existing cancers, and when they are wrong regarding volumn or Gleason, they always underestimate, never (virtually never) overestimating involvement or aggression.

During my biopsy, the instrument "broke" just before the last core was pulled (#12). I had to wait for a tech to fix it, and then finished all 12 cores. The result ?  ALL cores showed no cancer, except the 12th.  

I was told I had Stage 1 disease.  My DaVinci was not long thereafter (within a fefw weeks). After the gland was removed, the patholigist stated that I had Stage II disease.

This upgrading is frequently reported here at this Board.

There were no scare tactics involved.  A calm statement of clinical truths is not an attempt to frighten anyone; it is a sharing of potentially life saving information.

max

Grinder
Posts: 438
Joined: Mar 2017

RobLee just accurately described my experience with DaVinvi robotic prostatectomy. I was struggling with frequent prostatitis caused by an apparent recurring Staph infection. Even after antibiotic treatments, at my biopsy the prostate was still enlarged to 250cc compared to normal 25cc. I could have done active surveillance at Gleason 6 3+3, but opted for surgerry because of the triple threat of BPH, Prostatitis, and cancer.

Radical nerve sparing prostatectomy in June 2016. Incontinence recovery after 6 months or so, 98% recovery now. Erectile dysfunction recovery after one year, still recovering, about 90% with only minor issues, hopefully full recovery by two year mark.

My experience was exactly in the order RobLee described. One more SE should be mentioned... when the prostate is removed surgically, the urethra section goes with it, and the urethra is pulled up and reattached... leading to about 1-2 inches of penile shortening.

Whatever treatment you choose Pawpawbg, make sure you have skilled, experienced professionals administering the treatments. I invite you to read far into the archives of this forum and discover the commonality among all successful forms of treatment... skill and experience of the professional administering the treatment.

Steve1961
Posts: 235
Joined: Dec 2017

check out my blog ...almost 5 months on and no decision yet...I have been lucky enough to have met the supposedly the best of the best at Stanford and UCSF number 4 and 8 supposedly in the country ..lcyberknife expert 2 brachytherapy experts and 3 top notch surgeons who r nit pushing fir surgery ...but to tell u the truth I may end up doing surgery and be done with it ...cybrtknife sounds and seems great just not sold on it ..brachytherapy I just can’t see it nit messin* up my poor urinary problems 5 times more ..I mean do I want urgency 4 times a day instead of 2 do I want to get up 5 times a night instead of 2 and sit on the toilet fir 6 minutes each times while pee dribbles out like a bad faucet ....every single night fir the rest of my life going to be a huge tough decision ...This whole drama has been exhausting bone scans  mri sonograms ....but thank GOD so far all is good  but I really just want this over with ........it’s hard to bielieve all this far 3 little tumors the biggest one probably smaller than a pee and it Gould and would eventually kill u...wow cancer sure does suck......I went fir an hour long mri t3 kidney liver and prostrate. All was good ...guess how much 27000 dollar omg anyway my friend get many opinions hopefully u won’t have to hurry like I don’t have to at least that’s what they say April 20i will have narrowed down my choice hopefully it will help u .....old salt hopeful and helpful and a few other have helped me a lot ..listen to their advice like I have 

Tech70
Posts: 53
Joined: Nov 2017

I'm shocked at the $27,000 figure for your MRI if I'm reading that correctly.  I went for what was described in the radiologist's report as "Multiparametric multiplanar 3T MRI imaging of the pelvis with and without contrast"  The total amount billed Medicare, including drugs, was app. $5200.

 
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

In my area today, a CT now runs only around $3,000 or less, and even a PET is well under $10,00.

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi Pawpa,

Got to agree alot of what Grinder and Roblee said.  I too had surgery and I am glad I did.  Hopefully it got rid of the tumor once and for all, done, gone out of there. Surgery can leave you with very little ED and urine leakage, it takes a year or two to heal completely.  Radiation will work also but can have some residual complications later on 5-10 years down the road.  Colon lesion problems,scar tissue in the uretha & bladder, other cancers caused by the radiation because it can change your DNA where the radiation hits other tissue or organs.  You notice I said "can" as the side effects vary from case to case based on  the amount of cancer you have and its location to other organs.

All treaments have side effects so study them carefully.  Even at 3+4 you have some time to study what you want to do.  AS in my opinion does nothing more than push the decision down the road but is a good decision for an older man in his 70-80s, your cancer will not go away on it's own.

Dave 3+4

MK1965
Posts: 174
Joined: Jun 2016

Again inaccurate statement: Surgery can leave you with very little ED........

Surgical SE are way heavier and way harder to recover and they hit you upfront. Chances to recover ED are not higher then 50% at the best. According to one reaserch, only 23% of post RP patients are able to have erections at 2 year post surgery.

Whoever is happy with that, then RP might be good choice.

RT side effecto are milder, developing slower and they are consistent with aging, not much harsher. PDE5 inhibitors work perfectly same as for aging men. 

MK

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi all,

Well I guess me and a lot of other folks here beat the odds. No Ed after about 1.5 years.  As I said earlier RT can produce problems not consistent with old age like DNA changes and colon problems and possibly radiation induced cancers.  See my other posts.

Dave 3+4

 

 

 

 

 

 

 

 

Grinder
Posts: 438
Joined: Mar 2017

bill

Medical costs are so widely variant these days because of the dance between hospitals and insurance carriers. My RP gross costs were $55,717.00... after all the in-network and other discounts, the cost was reduced to $21,392.00. Unbelievable.

Grinder
Posts: 438
Joined: Mar 2017

"Prostate-cancer treatment causes ED because the nerves involved in erection border the gland. Surgery often cuts these; radiation frequently damages them.

A special surgical approach called nerve-sparing prostatectomy can push your ED risk below that of radiation. Studies report "functional" erections in 60 to 80 percent of men who have nerve-sparing surgery. "

 

https://www.aarp.org/home-family/sex-intimacy/info-01-2014/sex-after-prostate-cancer-castleman.html

ASAdvocate
Posts: 115
Joined: Apr 2017

Radiation appears to win out.

https://pcnrv.blogspot.ca/2016/09/patient-reported-outcomes-from-protect.html

 

 

Grinder
Posts: 438
Joined: Mar 2017


"RP was open and nerve sparing. While most men now have robotic surgery rather than open surgery, it seems to make little difference, except for some higher incidents of issues arising during the operation"...PCNRV

This is a disingenuous example of lumping together all results of open, laparoscopic, and robot assisted laparoscopic nerve sparing prostatectomy.

They should have separated nerve sparing robotic data from other types of RP if they wanted an accurate comparison. Since they do not, open surgery, et al, will drag down the data of nerve sparing RP. If nerve sparing RP data had been presented without the open surgery data mixed in, the outcomes for nerve sparing would have been much better.

And that is EXACTLY what happened in the studies quoted by the American Association of Retired Persons (AARP). When nerve sparing RP surgery was compared to other types of RP surgery, instead of lumping them together like PCNRV did, nerve sparing pushes "ED risk below that of radiation". 

But as far as proctitis and potential loss of bowel function side effects, radiation is the clear culprit. There are plenty of horror stories I have listed of proctitis and worse side effects, some permanent, in this forum. There are currently victims posting right now if you noticed.

But any fair review of research would also distinguish between diffetent types of radiation treatment. Some may have better results  than others, and lumping them all together gives an inaccurate view of the better treatments as well in regard to proctitis and/or loss of bowel control.

I have yet to see comprehensive research done which dileneates between ALL different types of radiation, radical prostatectomies, HIFU, laser ablation, etc.

So no, Radiation does not appear to "win out" against nerve sparing RP once you investigate their research methods and procedures, it only "wins out" against protestectomies in general of all types.

Clevelandguy
Posts: 441
Joined: Jun 2015

Where I used to work our Stats guy said what do you want the numbers to say? Really need a true comparison of open vs robotic and the various radiation methods.  Grinder's has some valid points.

Dave 3+4

Grinder
Posts: 438
Joined: Mar 2017

yes

Grinder
Posts: 438
Joined: Mar 2017

The following lists the variables that can affect research outcomes for radiation . For some reason everyone is ignoring my statements on the importance of variables, and continue to quote research that is skewed by those variables not taken into account....

"The incidence of radiation proctitis is not clear due to the lack of consensus on its definition and reporting methodologies. There is a general agreement that the incidence is likely related to the dose of radiation, area of exposure, method of delivery, and the use of cytoprotective agents. "

Listed above are four variables that will affect the incidence of radiation proctitis, and the data collected that apoears to support the conclusions of the research.

"External beam radiation studies have seen incidence rates of radiation proctitis range from 2% to 39% [710] depending upon the severity/grade of proctitis, whereas IMRT studies have seen incidence rates from 1% to 9% [1113] and particle radiation therapy in the range of 1% [14]. Although particle radiation therapy seems to have a lower incidence of proctitis, it is limited by cost and only available at specialized facilities. The incidence of proctitis in patients treated with brachytherapy alone is 8% to 13% and up to 21% when used in combination with other modalities [15]."

Incidence of radiation proctitis ranges anywhere from 2% to 39%!!! Why is that range so widely variant? Because of VARIABLES.

Again, as I have said before, the most significant variable in successful nerve sparing surgery is the skill and experience of the surgeons. I am getting blue in the face trying to get this across... is there a better way to explain this? Are we going to keep playing dueling data without regard to the variables that are essential in any meaningful discussion about research?

https://www.hindawi.com/journals/grp/2011/917941/

SantaZia
Posts: 64
Joined: Apr 2018

I have really enjoyed reading this discussion this morning.  I do a little research on disability and rehabilitation for work and after my PC diagnosis in Feb 18 I have had to do a lot more to understand my options (PSA 13.78 3+4). To me the most important thing is to be thoughtful in your decision making and consider each outcome possibliity. Consider your age, weight, sexual functioning and health as a baseline. None of the PC treatments are going to make you younger or improve your current sexual functioning.  I have a little scaring due to a TURP and long term catheter use so I am leaning towards proton treatment at MD Anderson. However surgery is still on the table. I have set a deadline of this May to make my decision.  I am a runner and just finished George Sheehan's Going the Distance book. He was called the running doctor.  He said everyone with PC hates their urologist.  I tend to agree after not having a PSA test from 2012 to 2018 based on the group think recommendation. Thank you guys for your debate.  I noticed on the Healhunlocked fourm the posts are a little more gentle. Be nice to each other we are all in this together.  

Grinder
Posts: 438
Joined: Mar 2017

This is not about choosing teams and which "side" you are on.

If MK quotes a study of general radical prostatectomy at only 23% recovery rate, and I quote a study of nerve sparing RP at a 60-80% recovery rate, where is the discrepancy?... By discovering the VARIABLE that made the difference between the two figures, in this case, all types of surgery versus nerve sparing surgery, we have already reduced the risk for cancer patients of the future. 

If we knew the VARIABLES that made the difference between 2% and 39% incidence of proctitis during radiation, we could reduce the risk for future cancer patients who choose radiation as well.

So, "winning an argument" about radiation vs prostatectomy is not the issue here, and i apologize if anyone got that mistaken impression from me. The issue here is reducing risk for future cancer victims, and the only way to do that is to investigate the variables that contribute to successful outcomes. 

Why was Cleveland's surgery successful? Why did some radiation treatments cause severe  proctitis when some did not? If I am a cancer patient newbie, I want to know WHY some were unsuccessful, and avoid that variable and reduce my risk as much as possible. A perfect example  is experience of the surgeon. Data needs to be compiled charting experience of the surgeon (number of RPs performed) vs. side effect incidence. There will most certainly be a correlation.

If you want to help the new cancer patients, help them reduce their risk.

Maybe this whole issue should be framed as risk management instead of comparative research.

 This is why i was disappointed when Surgeon's Scorecard quit updating their data. They used to show  the number of surgeries performed by each surgeon in the country, as well as the number of cumulative side effects resulting from that surgeon. That was useful for me at the time, but wont help the new cancer patients if they dont update it with current stats.

MK1965
Posts: 174
Joined: Jun 2016

No ones opinion can be heard and accounted in this forum if ti is not about surgery and praises of RP.

Every treatment has SE but surgical SE are the harshest and the hardest to recover from. It is not only me it is huge number of patients experiencing same problem in EF recovery.

Even Rob Lee was in doubt about RP when he started tread:”Were Your PCa treatment results what you expected?” 4/24/17 at cancerforumsdotnet.

Grinder , I recommend you go there and read it to see others recovery of EF after RP Which was very disappointing.

Please, stop mocking me for my bad outcome and do not mention me in your comparison.

i appreciate it.

MK

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

MK - Thanks for the reminder.  I do remember starting that thread on CFN but just tried searching for it and the search always came back empty.  If you are able to find it, could you please post a link?  I'd appreciate it. 

Sort of like a walk down memory lane.  It's always interesting to get a glimpse of what one's own state of mind was during a prior period of time.

MK1965
Posts: 174
Joined: Jun 2016

Rob,

for some reason I can not post link here to your tread from 4/24/17 on CFN but I can help you locate it.

It is on page 16 somewhere in the middle of page.

MK

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

The thread is here, for those that may be interested:

https://www.cancerforums.net/threads/50741-Were-your-PCa-treatment-results-what-you-expected

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi all,

Good thinking SantaZia & Grinder, you must study all the variables and weigh them against your specific case. Your cancer locatation in your Prostate, Gleason score, and other factors should all lead you to a specific treament tailored to your case.  Consult with your doctors and pick the best one & the greatest facilities to maximize your chance for success be it radiation or surgery. Don't be afraid to get second or third opinions.  As far as I know nobody walks away from any cancer treatment for Pca without some kind of collateral damage either early or latent.  Some recover very nicely and others have a hard time of it.  There are no guarantees in life so study & choose wisely, the balance of your remaining quaility of life is important.

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

I agree with all that Cleveland wrote.

Surgery is mostly a good choice (among others) for guys who are certain there is NO metastasis, with good heart health, and young enough for major surgery.   It is also best for guys who want immediate confirmation of their cancer status, and who would be uncomfortable with oscillating PSA results trying to establish a nadir level.  This last criteria is an emotional one, unrelated to liklihood of cure.

Surgery is also best for that rare guy like me who had prostetitis for decades or for men who have significant stricture (unination problems).  Radiation can (it usually won't, but CAN) worsen urination issues later on. 

I have much better urinary control AFTER surgery than before, due to preexisitng prostatitis and BEP/BPH.

max

PCaAware's picture
PCaAware
Posts: 1
Joined: Apr 2018

Prostate Cancer is as unique to you as is your fingerprint. We are all impacted in different ways.  We generally advise men to research the options and the long term consequences and move forward. Over time radiation and surgery can have the same effects on you or not. Its hard to tell what your outcome will be.  Once you decide be confident you have made the right decision.  In my own case I opted for surgery (Gleason 9) and i am glad i did as my PSA began to slowly rise. 5 years later my PSA registered in at 0.13. It was at that point i had the option to then undergo external beam radiation and Lupron. There a lot of options today to consider.  Some work on select patients while others do not.  Do what you belive is best.  Any of the major treatments surgery or radiatio (external beam or seeds ) can have consequences .  Treat the disease as you and your medical team see fit,  then move forward and enjoy living.  Dennis -- CEO  The National Prostate Cancer Awareness Foundation  

Clevelandguy
Posts: 441
Joined: Jun 2015

Amen brother, good post.

Dave 3+4

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