CSN Login
Members Online: 8

You are here

Just got my biopsy results .. now what?

grahambda
Posts: 18
Joined: Dec 2017

just got my results 14 samples, 2 were 3+4 and 3 were 3+3. Ranged from 5% involved to 15%. 1mm to 3mm.

recommendation is robotic surgery, dr Patel , Florida Hospital within 6 months.  He has performed more than 11,000 over 15 years. with high success rate of minimal side effacts and fast recovery.  Was considering  radiation till I read “the truth about cancer “ and the suggestion radiation can stimulate other cancer cells and impact DNA.

Welcome any advice. Thanks in advance.

 

 

Grinder
Posts: 441
Joined: Mar 2017

If your surgeon is that good, go for it. A six month waiting list is a good indication that he is in high demand. Also, it will give you time to read some of the past successes and failures in this forum to decide if this is right for you.

One side effect he cannot minimize is the shortening. A section of the urethra is actually part of your prostate that will be removed. The urethra is then pulled up and reattached, and your sex tool will retract along with it by one to two inches. Can you deal emotionally with that? Unless you start out hung like a horse, you won't be winning any contests after surgery.

You likely will be incontinent 3 to 6 months, then recover full continence eventually after successful robotic surgery.

After a successful surgery, you should regain erectile functioning up to a year or more later. Some guys regain it in a very short time. You may want to find out the average recovery time for most of this surgeon's patients as a guideline.

Other guys can fill you in on the particulars... those are the general guidelines.

grahambda
Posts: 18
Joined: Dec 2017

good point re the hung horse scenario , I am more like a pigmy pony ! So one for the  cons list for surgery route.

 

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi Grahambda,

Looks like you are doing your homework and studying the various treaments and their side effects.  Don't be afraid to talk to both the oncologist & urologist if you have not already done so.  I had surgery back in 2014 and don't regret it, still have a little stress incontinance and probably will have it for the rest of my life but no ED. It took me about a year to fully reover from my ED with progress being made over that time.  Hopefully your doctors will guide you to a treatment based on where your cancer lies inside of your prostate and what collateral damage could happen from both surgery or radiation.  Take the time to study and learn.  Sounds like the doctor you have picked has a good track record, very important for your sucess.

Dave 3+4

jeffman
Posts: 26
Joined: Oct 2017

I had surgery Sept. 20th. Catheter removed 9/29. I can't say recovery was a picnic-but considering the alternative it was a piece of cake. (4+3,Gleason 5, pT3a pN0)

Still have some incontinence after 6 months but improving. Slow but (I hope) Sure.  Still ED but now that's a minor concern.Orgasms still happen, so I got that going for me.

 

PSA less than .01 on 3 and 6 month follow ups.

Lots of good info here and it pays to check in.

 

 

Best of luck.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I've heard of Dr. Patel; he is one of the most experienced surgeons.

This is the 10th year that I have been following an active surveillance protocol where I have avoided the side effects of active treatments. It may be that you might qualify. Can you share more about your situation; any other diagnostic tests to include but not limited to image. PSA history , dre results, size of prostate, etc etc

I haven't read anything about radiation stimulating cancer and changing DNA. I wonder if you can share more about , "Was considering  radiation till I read “the truth about cancer “ and the suggestion radiation can stimulate other cancer cells and impact DNA" to include the author, and the qualifications.Here is a list of potential treatments that another member has posted on many occassions which you may find helpful.

 

"

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

 2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

 3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

 4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

 4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

 I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

 So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

 Good luck!"

Best wishes

grahambda
Posts: 18
Joined: Dec 2017

PSA last tested 3 years ago , just under 2.80,tested again December last year came back 10.7. Slightly enlarged prostate some minor ambnormailites on right lobe felt during DRE. Had MRI showed 3 small lessions, this mri scan was used as an overlay for the biopsy last week which came back with 5 of the 14 cores samples positive , two 3 + 4 and three 3+3. One other sample was classified as PIN.

 

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi All,

H&O wrote: "I haven't read anything about radiation stimulating cancer and changing DNA. I wonder if you can share more about"  Attached are a few of the many articles about radiation treaments causing DNA mutations.

As mentioned, ionizing radiation inevitably reaches normal tissue, inducing bystander effects in tumor-adjacent normal cells that may contribute to chromosomal aberrations and to increase the risk for new malignancies Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4763322/

It has long been known that radiation therapy can slightly raise the risk of getting another cancer. It’s one of the possible side effects of treatment that doctors have to think about when they weigh the benefits and risks of each treatment. For the most part, the risk of a second cancer from these treatments is small and is outweighed by the benefit of treating the cancer, but the risk is not zero. 

Source: https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/basics.html

If the cell is exposed to ionizing radiation, double-stranded breaks occur along the entire length of the DNA. Mutations occur if the repair mechanisms re-attach the wrong piece of DNA back together, so that a part of the DNA strand goes missing. This may lead to the deletion of important genes, or a change in the location of a gene within the DNA. These types of mutations are linked to the development of a number of cancers, including leukemia.

Source https://www.livestrong.com/article/118080-effects-radiation-dna-mutations/

 

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Thanks...........interesting information...good use of sources

grahambda
Posts: 18
Joined: Dec 2017

I was told by my urologist earlier this week, who specalizes in robotic surgery, that if I initially opt for any form of radiation treatment and it is not successfull then surgery will result in major sideffects. Apparently the radiation will also destroy healthy tissue and therefore low probability surgery will be succesfull due to the collateral damage of radiation  resulting in a high probability of long term ED and IC. So essentially the decision to have robotic surgery has to be the only choice from day 1 if I am to have any hope of minimal side effects.

ASAdvocate
Posts: 116
Joined: Apr 2017

It seems that everyday I read somebody (or several) repeating the myth that "you can't have surgery after primary radiation" and that "surgery first, radiation secondarily, gives you two bites at the apple".

Radiation advocates will trash these statements as deliberately misleading. Why? because there are several salvage options should primary radiation fail. Some links for you:

https://pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html

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

https://www.sciencedaily.com/releases/2016/04/160418145458.htm

https://pcnrv.blogspot.com/2016/09/5-year-sbrt-trial-high-cancer-control.html

 

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

As far as the possibility of Active Surveillance, monitoring, read about what I did. 

https://csn.cancer.org/node/315620

Additioanlly if you are over 70 the guidelines for active surveillance are more relaxed.

As far as the high PSA, there are various factors other than prostate cancer that can elevate; infection, sex or bike riding before the PSA  even a hard stool. In addition larger prostate lay on the uretha thus secreting more. In active surveillance one looks for the ratio of the prostate size to PSA to be less than 0.15

................

I agree with ASAdvocate, radiation is a perfectly aceptable choice for cure, with less side effects than surgery. Like ASAdvocate I have been in an active surveillance program for many years, and have had a chance to study the various treatment modalities during this time........my thoughts about active treatment are virtually the same as ASAdvocate; SBRT is my first choice and HDR is my second....(kinda interesting since I was not aware of ASAdvocate until he started posting at this forum in Apr 2017)

Here is a nine year study about SBRT which lists outcomes by risk ranking, low, intermediate and high, and side effects that were found.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

more

https://csn.cancer.org/node/315653

grahambda
Posts: 18
Joined: Dec 2017

With a PSA of 11.48 and 5 of 14 cores positive with Gleeson scores of 6 and 7 (3+4) and one PIN, the concern i have with AS is what happens between routine checks and the cancer spreads beyond the prostate - is this possible if I have PSA tests every say 3 months and an annual biopsy?  if the PSA stays at around 10-11 does this mean the cancer is not growing/spreading?

Old Salt
Posts: 720
Joined: Aug 2014

that you are not a good candidate for Active Surveillance.

Let's focus on the big question: surgery or radiation?

I agree with ASAdvocate that the radiation/no surgery issue is a fallacy. This forum has proponents of both forms of therapy, but the decision is up to you, obviously. Carefully consider the data (!) and don't get misled by anecdotal opinions expressed on this, or other, prostate cancer forums. 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Your PSA is high and of concern; which hopefully is due to factors other than cancer, infction, bike riding , sex before, etc. If that is so and a new targeted biopsy reveals that the cores that you had and are positive are cancerous, are small, that is, have not extended outside the cores  that were found. You will have to do additional testing to see if you are eligible for AS. To be honest you are currently on the cusp.

There is a targeted biopsy that is done, which I think that you had; that consists of  a T3 MRI--the results of which are locked into a three dimensional ultrasound biopsy machine that major institutions of excellence have. The facility that did mine used a machine manufactured by Artemis. there were four cores of small amounts of cancer that was found in your biopsy. If i this was a three dimensional, not a two dimensional biopsy that is done in most doctors offices,  the urologist had the ability to go back to the exact same spot where a 3+4's were located to see if the tumors were more extensive.........also the doctor can take other cores in the prostate to determine any onther activity if any....because, if there is a lot of cancer even of gleason 6's, it is likely that a gleason 7's and above can be hidden. If there is a lot of cancer in the prostate active treated is necessary

Now to answer your direct question, the PSA is an indicator only....the critical information is found in the results of  the biopsy, the gleason; so for example in my case, the doctor does a biopsy every two years unless there is something going on, then an extra biopsy is done....I've had 7 in the last 10 years.

It is important for you to see a urologist who specializes in the ACtive Surveilance protocol, preferably at a major institution of excellence, who has the t3 mri and a three dimensional biopsy machine ,  to obtain an opinion before enrolling in an active surveillance protocol. Currently there are four cores ound, although small in volume that was found in your porstate, which is high for AS,  , so you want to speak with an expert medical professional to see if you qualify to investigate active surveillance as a treatment.

grahambda
Posts: 18
Joined: Dec 2017

I did have a 3T MRI (with and without contrast), this image was used to direct the recent Biopsy to target the identified lesions. A very summarized version of MRI findings:

Prostate size 48.41 cc.

1)areas of signal abnormality and enhancement in the transitional zone suggesting BPH with prostatitis.

2) PI-RADS, three lesions in the base of the peripheral zone both left and right this includes focal areas bilaterally.

3) Prostate gland size and PSA are discordant with high PSA density.

 

So based on the above off to Florida Hospital (Orlando) for the MRI assisted biopsy.

 As an aside the procedure was painless (had general anesthetic ) , done in 45 minutes, out within 2 hours, other than taking time to initially urinate there were  no side effects  at all and zero  post procedure pain, to the point after a day I was beginning  to doubt whether they actually did the biopsy!  – but after couple of days blood (a lot) appeared in the seaman (none in the urine), so in a way I was relieved as proof they actually did something!

A summary of the Biopsy results.. of the 14 samples (most centred on the identified lesions from the 3T MRI.

 

-         

Samples 1 through 6 all left lateral, one of them Left Lateral Apex a PIN was identified all others benign tissue

-         

Sample 7 – right base prostate, one of two cores positive 3+3 = 6. Andenocarinoma It is 5% involved max length 1 MM grade group 1 (of 5)

-         

Sample 8 – right mid prostate, one of two cores positive 3+3 = 6.  Andenocarinoma less than  5% involved max length 1 MM grade group 1 (of 5)

-         

Sample 9 right apex- benign

-         

Sample 10, right lateral base, two of two cores positive for gleason 3 +4 = 7. It is 15% involved max length 2mm. Grade group 2 (of 5), percent pattern 4: 10%

-         

Sample 11, right lateral mid , two of two cores positive for gleason 3 +4 = 7. It is 15% involved max length 3mm. Grade group 2 (of 5), percent pattern 4: 10%

-         

Sample 12, right lateral apex , one of two cores positive for gleason 3 + 3= 6. It is 5% involved max length 2mm. Grade group 1 (of 5)

-         

Sample 13, Right base, crushed sub-millimeter atypical small acinar proliferation (ASAP).

-         

Sample 14  Left base, benign prostatic and seminal vesicle tissue

 

 I am 60 years old and otherwise in good health I exercise 5 days a week (HIIT), have high blood pressure but controlled with drugs for the past 15 years so average 120/70, borderline pre-diabetic but been on a Keto diet for a couple of months which had brought the sugar down to around 90 after fasting. So other than this pesky prostate issue I feel I am in good health. I am reasonably sexually active, my wife is 17 years younger than me, so the thought of anything other than mild ED and short term incontinence as a result of any treatment is a major concern for both us (but of course not at the cost of not getting the Cancer sorted).

So I am  back to big question that I need to find  answer over the next few weeks  – robotic surgery, radiation, HIFU, Immunotherapy or ???

Welcome any and all input, thanks I am feeling I can get through this but not on my own.

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi Graham,

Do you know where in the Prosate your cancer is located?  Close to the edge, buried deep inside?  That could make a difference on how long you have to wait before the cancer escapes.  I was a 3+4 and had surgery, when they did the pathology on the removed Prosate they found the cancer right at the edge of the gland.  I was very glad I did not wait several months on AS or probably it would have escaped the Prostate, then I would really have had a problem.  Radiation and surgery sound like good ways to hopefully eradicate the  beast from your body.  Just remember both radiation & surgery have side effects, but different ones.  For me the main goal was to get rid of the cancer and live with the side effects.  Study them because which ever you choose they will be with you for a while. Great doctors & great facilites usually produce great results, don't be afraid for a second or even a third opinion.  Study, study & choose wisely my friend.  

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Apparently the urologist who did the biopsy recommends active treatment. You may ask for his opinion on going back to the cores that were cancerous to see how extensive, but 5 out of 14 is a large number, and active surveillance may be in the cards

As far as surgery I am not an advocate of surgery because the great side effects of which ED is a potential issue..

If I were to do surgery there is a doctor tewari in NYC who is the best of the best.  He developed a technique to minimize incontinence.

http://www.prostatecancercenternyc.com/robotic.html

http://www.mountsinai.org/profiles/ashutosh-tewari

I strongly suggest that you look into SBRT aka cyberknife, novalis and other machines that deiliver SBRT. The side effects during thee administration which is done in 4 or 5 sessions depending on the preference of the radiation onchologist are mimimal, and you can go on with your daily life.

As far as sexuality, there will be a dry ejactulation, I believe.

Nine year study of procedure listing cure rates and side effects

http://www.prostatecancercenternyc.com/robotic.html

 

 

 

grahambda
Posts: 18
Joined: Dec 2017
Grinder
Posts: 441
Joined: Mar 2017

I dont want my prostate back, period. It was ruining my life, not to mention the threat of cancer. I wish I could give that guy my prostate. He would run screaming to the surgeon "Get this accursed thing out of me and good riddance!" .

:)

grahambda
Posts: 18
Joined: Dec 2017

Thanks Grinder, are you able to share any sde effects you had post surgery? was it robotic?

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

Grahambda,

My lay opinion on the data you posted above, and taking into consideration your age, worries regarding ED (young wife) and quality of living (HIIT), is that RT may be the appropriate choice for you in the short run. You got 7 positive cores out of 14 (not 5 as indicated in your above post) of which grade 4 seam to represent a larger volume. The PSA (10.7 ng/ml) is high and the positive DRE (abnormalities on right lobe) creates the suspicions of extra capsular extensions.
The data puts you into high risk of having cancer spread. In your shoes I would only chose surgery after confirming with a PSMA-PET exam that cancer is contained.

Radiation treatment can be delivered via several means. Your left lobe seams clean so that Braky may be a good try. This could be done in combination in a protocol using adjuvant IMRT. You need to check for any lymph node involvement but I would also cover the closed ones in the IMRT field.

I wonder why you are against RT. Many urologists we consult are against RT, using negative terms to frighten patients (the type of your doctor's suggestions). You should investigate further into the treatments for prostate cancer, discuss your findings with your family and decide accordingly. Your quality of living is in jeopardy. Do things coordinately and timely.

Please note that we are not doctors but a bunch of survivors speaking out our own experiences and knowledge gained along our survivorship.

Best wishes,

VGama

ramaka
Posts: 55
Joined: Mar 2017

Hi Grahambda:

My dad was 71 years old when he got diagonised with PCa back in April 2017. His GS was 9 with cancer spread to nearby lymph nodes. He is one of the healthiest person I know (wakes up at 5 AM, exercised every day for an hour and walked 5K every single day rain or shine, feeling good or under the weather!). He underwent RP (with removal of lymph nodes) in September and below is his journey so far post RP, hope it helps you in some ways:

Positives:

He had no complications post surgery (except Lymphocele which I will share in detail below). He had no issues with incontinence. Once the catheter was taken out, he felt and behaved like a "new" man full of excitement and got back to his true passioon of visiting different countries. His follow-up PSA scores were<= 0.1.

 

Negatives:

I read his is a rare case but 6 months post RP he went in for a routine follow up visit and the Dr found a lump in his abdomen. They did US and found it was a lymphocele. They put in a drain pipe in the abdomen, monitored him in the hospital for couple of days and released him. Once he went home, he complained of pain in his left hand and was taken to another multi-speciality hospital where they said he had experienced a massive heart attack (not sure if the ymphocelle and heart attack were connected). They could not do an agioplasty since he still had the drain pipe in his stomach and the Drs were scared that if they gave him any blood thinners he might bleed profusely. Finally the urologists and cardio guys met and decided he was ok to have the angogram. The results showed blockage in his heart but not that bad that it needed angioplasty. He was prescribed a few meds and sent home. His Lymphocele has still not drained completely since past 6 weeks, but recent US showed that it is draining and he has a follow up again next Wednesday. 

I am not trying to scare you wth the above, but just sharing what my dad is going through post RP. Please make sure you and your surgeon know about the Lymphocelles post RP even if it is rare occurances! 

Wishing you and your family the best!

Avi.

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

If the cancer had spread why did they do a RP?

VascodaGama's picture
VascodaGama
Posts: 3030
Joined: Nov 2010

Avi, I believe you ment to say RP (radical prostatectomy).

ramaka
Posts: 55
Joined: Mar 2017

Yes, apologies for the typo :)!

Grinder
Posts: 441
Joined: Mar 2017

Robotic Davinci surgery was exactly what was required in my case... but the PC was entirely contained and had not escaped the capsule.

It like a sealed box full of roaches in your house. As long as the box is sealed, the easy solution is... get the box out of the house!

But once that box gets opened, roaches start scattering... taking the box out of the house is no longer the easiest option. 

As for side effects, the one that is inevitable for RP is the shortened length that we discuss at length (pun intended) throughout this forum. I lost 2" for sure. .. it may be because of the size of my prostate, i dont know. With BPH and a Staph infection, I dont know how big it was when infected, but it would shut all my plumbing down. With antibiotics, I could knock down the size to a manageable 250cc when i had my biopsy, and then down to 197cc during RP. As long as I kept it in the 200cc range, I could function with Cialis and Flomax. Once the infection flared up, it was off to the ER to get a Foley. 

At 197cc during the operation, I dont know if it took more of the urethra along with it. It may have had nothing to do with it... I don't know. If it did, then most guys probably don't have to worry about losing that much.

Incontinence was 6-8  month recovery, now about 98% recovered. I fold up Viva paper towels and stick a piece of double sided carpet tape along the folded seam. Much cheaper than minipads and more comfy. Since I hardly ever drip, they work fine in the rare occasion... I probably could get by without them.

ED for much longer with more gradual improvement. After over a year and a half, I have full recovery except for quirk... I have to make sure bladder is completely empty before any sex or... you get the idea.

So you asked, those were the side effects of RP in my case. It was an absolute necessity for me... but it may or may not be right in your case. Every procedure should be on the table and your urologist/oncologist/GP should have ONLY your best interest at mind.  There should be no other motive. In my experience, that is not easy to find, but they are out there.

ASAdvocate
Posts: 116
Joined: Apr 2017

I have read the three links that you cited in your April 3 post against radiation therapy, and found them to be unconvincing or irrelevant to prostate cancer.

You may feel a need to justify your decision to have have surgery and to live with its side effects. I get that, totally normal. But, to speciously attack other treatments that might be better for the next guy...well, please think twice. 

Clevelandguy
Posts: 461
Joined: Jun 2015

Hi,

Well that's your opinion, I think they are very relevant to what radiation can do to you. I have no regrets with my surgery and I am not trying to justify anything.  Just trying to let people know that all treatment plans have side effects.  Pick and choose carefully after you study them because they can effect you for a long time after you have the procedure. Surgery & Radiation have different effects both long term & shorterm.  It's all out there on the internet, just look it up.

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Yes there can be side effects from any treatment, however surgery offers greater side effects that happen more often. 

For example, the possiblility of getting hit by a car when crossing the highway is greater, with more damage...surgery., and crossing local street also has a possiblity of a person getting hit by a car, but less often, with generally less damage..radiation.   Active surveillance...don't have to cross the street, no collateral damage.

Please understand 

Clevelandguy
Posts: 461
Joined: Jun 2015

Don't know if I would compare Pca to a car/pedestrian accident but I guess stranger comparisons have been made. AS is fine but does nothing to get rid of the cancer, it just monitors it.  Great if you want to do that but I wanted to treat my cancer.

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

AS is considered a valid decision for low risk cancer, and is recommended by medical professional, including but not limited to surgeons. In fact in my case a world class surgeon recommended AS for me, and monitored my case for a year. He did not want me to suffer the consequences of active treatment.....these doctors take an oath, "do no harm" 

There are men who when diagnosed with cancer that qualifies for active surveillance insist or are guided by unscupulous doctors to have treatment such as surgery or radiaiton, because they do not want to have the cancer in their body, and many suffer side effects from these treatments, and thus experrience a poor life quality for the remainder of their lives. Like you, they said "Great if you want to do that but I wanted to treat my cancer."

 

Clevelandguy
Posts: 461
Joined: Jun 2015

Yeah in my opinion active growing cancer is not a thing I want in my body, just makes sense to me. No doctor guided me to this decision, something I knew I wanted long before I saw a doctor.   Just my choice to not let it grow and become more of a ploblem later on.  If I would have done AS my cancer would have escaped and spread to my bladder and Prostate bed. AS might be a good choice for you but that does not make it right for everyone, depends on where the cancer lays inside of your Prostate, mine was close to the edge.  Intervention was necessary in my case.

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Agree...........Not saying that AS is for everyone...it is not. It is only for those who meet the criteria for low risk....but among these men who do qualify, many to their misfortune over treat. 

 

MK1965
Posts: 178
Joined: Jun 2016

In surgery vs Radiation contest my vote goes to Radiation.

Radiation SE are delayed and progressing slowly so you don’t experience them as total nock down where you loosing your game. You have more options, non invasive options, to counteract them where in most cases PDE5 inhibitors are working giving you your sex life back. 

What I like about it, livin life as it could be possible at older age. Pop up Viagra and do the job. If your heart is strong enough, sex Life could be as good as with normal aging.

i would forget everything about surgery if, if at least I would have some kind of semi sex life. I am 17 months post RP and my last attempt to have a sex was last Labor Day weekend. Also missing ability to experience good and satisfied orgasam. I am in sexless life now.

MK

grahambda
Posts: 18
Joined: Dec 2017

just had my first consultation with Ongologist at Moffitt since my Biopsy back in March. He walked me through the options and stated that although I am on the low risk end of intermediate (GS score of 3+4 and PSA of 10.8 ..see this tread for detailed results) he suggested AS should not be an option , so surgery vs radiation. Came down to a probable course of intense 5 days of radiation. I would however like to get the Genomics DX test just to make sure. If that comes back with low risk score I may opt for a year or two of AS. Has anyone else had experiance with Genomics testing ? My reasoning is if the test come back with high risk then my decision will be made and no regrets on the probable side effects. Just hate to do this without being as sure as I can be and using all available tests. Thoughts?

SantaZia
Posts: 64
Joined: Apr 2018

I had the Prolaris and PTen tests which were worth my time especially considering AS. A second review of my biopsy slides by MDAnderson pushed me over to Hormone treatment as it changed my intermediate to the advance side with a 4+3=7. I also sent my samples to John Hopkins, but it won't change my treatment opinions. I am leaning toward pencil beam proton at MD, but could do treatment with radation at local hospital. It depends. I will need 48 days of treatment and although I can stay with my son in Houston I would rather be home with my wife. It is a hard choice but take your time. Good Luck!

 

68, PSA 5-18: 12.7, 4-30-18: 13.9, 1-30-18: 13.2, 1-13-18: 13.7, 5:04-12: 2.1

3-month injection of Lupron 5/21/18 Bicalutamide 50 mg 30-day supply

3+4=7 in two cores 2/13/18 or 4+3=7 MD Anderson review of images 5/21/18

1.8 lesion MRI T3 3/27/18 Bone scan clean

grahambda
Posts: 18
Joined: Dec 2017

And the all best with the treatment, this truly sucks!

grahambda
Posts: 18
Joined: Dec 2017
I met with the Dr that performed my biopsy earlier today to gain his insight on my prognosis and recommendation. Not surprisingly as the leading  radical robotic specialist (11,000 surgeries and counting !)  he was suggesting  that surgery was the way to go given my age and biopsy results. In summary his thoughts...
 
 
  • Although he concurred my current state is on the lower end of intermediate risk,  but  due to the fact that 7 of the 21 core samples were confirmed cancerous  Gleason 6 (3+3 for three  of them) and Gleason  7 (3+4 four of  them) and were widespread in the right lobe and near the exterior of the gland,  in his opinion  Active Surveillance (AS) is not recommended as I already have a 15% probability that the the cancer may  have escaped the gland.
  • When I requested a Genomics DX test he was fine  to make that referral  and would expect the result to return a low to intermediate  risk of aggression  given my Gleason and PSA score , "but the cancer is not going away and will only get more aggressive over time,  so a low DX score today may convince me to go the  AS route but this would delay the inevitable and longer I wait the probability of the cancer growth and spread is guaranteed - its not  IF but WHEN"
  • When we discussed radiation as a treatment option in his opinion: "the side effects will eventually equal or exceed that of surgery, difference being with surgery the impact is immediate (ED and incontinence) but with a 90% chance of reversal within 3-6 months (of course no guarantees)  vs Radiation where the side effects will inevitable occur  but at a later date (6-12 months). He also noted that due to my biopsy revealing a widespread cancer within the prostate the radiation would need to attack the majority of the gland which could be an issue and needs to be considered. 
  • He also cautioned that radiation "may" cause the secondary  spread of  cancer , so although it may treat the prostate there is a published high probability that cancer may appear in the rectum, bladder, colon  etc at a later stage  which would result in far more radical surgery being needed to address those areas  vs the  immediate  removal of the prostate which would greatly reduce  any such risk..
  • He did make an "of the cuff" remark that if I chose the radiation route "that is  fine- but eventually you will come back to surgery for removal with  more serious  consequences and a higher probability of permanent   ED and continence issues".
 
So as you can imagine I am now totally confused, concerned  and unsure of which direction to take :-(       I know that the final decision has to be mine but to reach that conclusion  I need to be as informed as possible and have no regrets post- treatment regardless of outcome.

 

Thnask once again in advance for any input.

SantaZia
Posts: 64
Joined: Apr 2018

It will be important to take your time and do some research. Your surgeon looks like a a high volume guy and maybe he has some patients that are willing to talk to you. I would ask him. Also get a second opinion on your Biopsy and get andy genetic tests and T3 MRI or other test done too. These will all help with staging your cancer treatment. I like the new book by Mark Scholz The Key to Prostate Cancer. There are a ton of other books too that you can probalble find used on Amazon. I think everyone needs 3 or 4 months to really figure this out. No treatment option is great, as far as potential side effects. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

I have not written to you before graham, but have followed this discussion since Day 1.

A few common "truths"  (factoids that are mostly undisputed by mainstream sources).

1. Surgery is mostly for non-metastatic disease. If pathology after surgery indicates metastasis, curative IMRT will be started afterward.  So the core question for you becomes: How likely is there escape from the gland ?

2. Although I am a guy who chose surgery with excellent results, I do not advocate for any form of treatment.  There was a discussion above about RT causing secondary cancers. I would say that this is profoundly UNcommon today. Very unlikely for most men.  What is slighlty more common is colon burn or bladder damage, but these, too, are very uncommon today.

3. "There is no surgical option following RT."  True and false.  My urological surgeon has a subspecialization in operating on failed RT patients, but this is a very rare skill set.  Some surgeons will address urine pproblems after RT, but even this is tricky.  So while issues after RT can in theory be surgically address, it is uncommon and problematic. 

When I asked a radiation oncologist, Director of the Department, straight up what options there are if first-line radiation failes to cure PCa, he replied "Hormonal Therapy."  Never thought twice about it, and said that surgery post RT is a non-starter, at least toward curing PCa.

In your case, I might lean toward IGRT, which is a somewhat improved technology over IMRT. Ask specifically about IGRT.

max

 

Grinder
Posts: 441
Joined: Mar 2017

As I have been watching the latest posts here compared to archived posts, it's my impression that both surgery and radiation are both becoming safer and more surgeons and oncologists are becoming more expert at administering treatment.

 You cant hardly blame your surgeon for having confidence in his ability. If you had a radiation oncologist just as experienced as your surgeon he would say the same thing about surgery... that your risks are much greater than radiation.

If it were me, and keep in mind I am still relatively new here,  it depends on how experienced and expert a radiation oncologist I could find. If I cant find one as expert as the surgeon, then I would go with an expert surgeon over an inexperienced rad onc.

Experienced rad oncs are getting better at targeting and experienced surgeons are getting better at nerve sparing. I can attest to the latter because my prostate was still 10x normal size making surgery more difficult.. But was wildly successful anyway. 

It would help to find a side effects history of the doctors and hospitals in your area... But that is difficult to find. 

Rickdean
Posts: 17
Joined: Mar 2018

Get it yanked out.  I did 3 months ago at KU Med by Dr. Parker and it was a piece of cake.  Only downside was the catheter.  It is annoying.  but other than that no pain at all.  Got catheter removed on Wednesday and Saturday I played raquette ball and went bowling.  I even had erection with catheter still in !!!  Also had a few beers the day before catheter removal.  Quit searching the internet and just get it done.  In hindsight I wasted hours and hours of pounding the internet.  Its no big deal and I talk to people all day long in my barber shop and I'm really surprised at the number of people who have had it done with no ill effects.  In and Out of KU Med in 23 hours.  Done.... 

Here is my Path report.  http://www.mercedescodereader.com/Prostate.html

CC52
Posts: 103
Joined: Nov 2013

grahambda - 

Hello, and welcome.

SBRT patient here, coming up on 4 years since my treatment. I don't post much these days, but I do check in and felt compelled to reply. My story here: http://csn.cancer.org/node/264905, as well as this related to my treatment: http://csn.cancer.org/node/292915.

You are moving toward a treatment decision, one that is so personal in nature that no matter what others' experience may be, you must make your choice based on what YOU are most comfortable with. 

Ultimately, my choice of RT (SBRT, CyberKnife) was made after allowing myself the time to process, first the Dx, then self educate and explore treatment options.

You are on a good path of understanding the "beast" and how to attack it. You are at a good place here with the folks at CSN. 

Best wishes my friend. Take care...CC52

 

Subscribe to Comments for "Just got my biopsy results .. now what?"