Advice, support, anything you would like to add

MikeB1969

New to the site, 

I have read some of the diagnosis that other men on the forum have had and have read how they are handling their issues.

My PSA results have been creeping higher in the last few years.

My original test in 2011 was 3.9 so during my yearly check up this year my GP was not going to do a PSA but I asked to have it done anyway.

The results indicated I needed to see a urologist and the urologist decided due to my family history that I needed a biopsy on the prostate to confirm what was going on. 

After my biopsy in October, I was diagnosed with prostate cancer. 

I'm 48 years old 

Gleason 6 3 + 3

cT1c 

6/12 cores positive 

5/6 on left side

1/6 on right apex

CT abdomen and pelvis negative.

Erections still happen nightly more aware of them since diagnosis, 

I have had incontinence issues for years but never thought about what caused them.

The original urologist scared the hell out of me after the CT scan tellling me I needed to have a bone scan due to some issues found in my hips and on my vertebrae. 

Bone scan came back negative.

Received a second opinion from our Cancer Clinic Urologist.

I was advised that I was not a candidate for active surveillance due to the high volume low risk disease. 

I'm scheduled to have a Robotic RP in two weeks. 

I stumbled onto this forum after looking for a place to read more about what other men are going through. 

The initial reaction that I had was that I would be dead within five years but after getting better information and asking the right questions and having a better urologist  my worries have eased and now have a new perspective on my diagnosis. 

None of us are guaranteed a tomorrow so I'm living for today. 

I'm hoping that the cancer is contained just to the prostate and I'm not looking forward to the incontinence or the ED.

I'm hopeful that at my younger age, I will be able to bounce back within a year or so.

Any suggestions on after surgery care would be greatly appreciated. 

 

 

 

Steve1961

sorry

i was just dignosed as well.....personally i could care less about incontinance or ed...then again i am 57.and married for 30 years...hopefully its all contained from what i am hearing here stage 1 and 2 have a great chance of beiong contained....get it out...get in shape...eat good ..live good...enjoy life  ..dont look back..they is alot more to life than dribbling a bit  and maybe not getting an erection or half an erection...thats just my opinion..good luck my friend i know how u feelllllllll.....personally i am scared as heck as well......are u going to a university thye best of the best....please make sure u are......

MikeB1969

Steve1961 said:

sorry

i was just dignosed as well.....personally i could care less about incontinance or ed...then again i am 57.and married for 30 years...hopefully its all contained from what i am hearing here stage 1 and 2 have a great chance of beiong contained....get it out...get in shape...eat good ..live good...enjoy life  ..dont look back..they is alot more to life than dribbling a bit  and maybe not getting an erection or half an erection...thats just my opinion..good luck my friend i know how u feelllllllll.....personally i am scared as heck as well......are u going to a university thye best of the best....please make sure u are......

Thanks Steve, going to a

Thanks Steve, going to a university hospital. 

I hear nothing but good things about the specialist that I'm going to. 

He has done over four hundered procedures using the da Vinci robot. 

I have to get myself in shape after the surgery and start eating healthy and getting my weight gain under control.

Haven't exercised in several months (I have no excuse for not exercising). 

Have been fatigued due to lack of sleep and overall stress.

Though I have read that the fatigue could be due to cancer. 

Not for sure. 

Thanks for responding. 

Good luck to you also. Keep me posted and I will let you know how my recovery is as well. 

 

 

 

 

Clevelandguy

More opinions?

Hi Mike,

Sounds like you are heading down the right path but I feel you should see a radiation oncologist just to get their side of the story and what treatment plans they would recommend.  You have months to decide on your treatment, and a few more weeks will not matter.  Then when you have ALL the treatment options for your reivew you can decide.  I wanted the cancer gone and had surgery but pick a very experienced surgeon and great facilities.  Your speed of recovery will depend on the skill of your surgeon and the extent of the cancer.  It took me about two years to fully recover from the ED & leakage but I would do the surgery over again. Use it or loose it is good to remember after your surgery, get the blood flowing in the groin area by any legal means at hand.  Geting blood to flow to heal is very important plus it will take time for your body to heal from the trauma of surgery.  You should see monthly progress on both ED and leakage.  A lot of good stories with radiation successes on this sight also.  A lot of options out there, it's up to you to pick the correct one for you & your family.  Good luck and if you need more things answered somebody is here to help.

Dave 3+4

MikeB1969

Clevelandguy said:

More opinions?

Hi Mike,

Sounds like you are heading down the right path but I feel you should see a radiation oncologist just to get their side of the story and what treatment plans they would recommend.  You have months to decide on your treatment, and a few more weeks will not matter.  Then when you have ALL the treatment options for your reivew you can decide.  I wanted the cancer gone and had surgery but pick a very experienced surgeon and great facilities.  Your speed of recovery will depend on the skill of your surgeon and the extent of the cancer.  It took me about two years to fully recover from the ED & leakage but I would do the surgery over again. Use it or loose it is good to remember after your surgery, get the blood flowing in the groin area by any legal means at hand.  Geting blood to flow to heal is very important plus it will take time for your body to heal from the trauma of surgery.  You should see monthly progress on both ED and leakage.  A lot of good stories with radiation successes on this sight also.  A lot of options out there, it's up to you to pick the correct one for you & your family.  Good luck and if you need more things answered somebody is here to help.

Dave 3+4

Thanks Dave

My family and I have discussed the radiation therapy after consulting with both urologist.  

Both urologist described that area turning into basically jello after the treatments.

If the cancer did return after radiation treatment, there were no options except immunotherapy for containment. Basically chemical castration. 

They said if I was ten years older, the radiation treatment would be the recommeneded course of action. 

I have a supportive wife and family at home so I consider my self blessed. 

Thanks for the advice on after surgery. 

That is what my concern is now.

I will get the cancer out and deal with it if it ever comes back. 

hopeful and optimistic

.

Mike 

I am sorry for your diagnosis.

You did not mention your current PSA and the PSA observiations since 2011?

Did the digital rectal exam (finger wave in anus ) reveal anything out of the ordinary?

Did you have any other diagnostic tests, ie. a FREE psa blood test, etc.

I notice that you did not mention having an MRI. A multiparametic MRI with a T3 magnet provides best definition in clinical use, and may reveal if there is extracapsular extension, that is if the cancer is outside the prostate, which will affect your treatment decision. The CT scan that you had.  does NOT provide the definition that an MRI would.

You mention that a surgeon that you are considering did 400 surgeries. Please be aware that there are surgeons who have done 1,000"s. There are also other criteria in measuring the competence of the surgeon, ie surgical margins.

Apparently you have visited with two different urologists, and no radiation oncologist....the opinions that you received from these urologist are slanted toward surgery, since that is what they do. Please be aware that the side effects from surgery can be greater that other choices of treatments, ie radiation.

One radiation treatment that is fairly new, and generally has limited side effects is SBRT. There are different platform to deliver such as cyberknife, novalis, etc.

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

With reference to Active Surveiillance, although your Gleason is a low 3+3=6, when there are several cores that are cancerous, it is likely that more intermediate cancers exixt, but have not beeen located, so as a lay person who is being monitored with Acitive Surveilance for many years, I can only agree with the urologists that you saw.

Mike, since there is a greater chance of prostate as well as breast cancer among family members, you need to contact your blood relatives; that is, brothers, sisters, uncles, aunts and even cousins so they can be tested. This is the right thing to do.

Keep on posting with your questions. We are here for you.

Also there are local support groups world wide for prostate cancer. There is an organiztiion, ustoo.org that sponsors local support groups....google for your area.

Research, you need to read books, etc....you do need an active treatment, but since prostate cancer is slow growing you need to do your due diligence by having proper diagnostic tests and meeting with docs in various specialties before making a decision that you may regreat for the rest of your life.

 

Best

 

 

1005tanner

Sorry to hear about this ,

Sorry to hear about this , you will get great advice from this forum because these guys have lived through there situations and can guide you

for some great treatment options. Seek out a surgeon who has done alot of these surgerys and ask for his satistics on ed and incontence

if that is the route you go. Dont be afraid to ask questions on all treatments and good luck to you and family.

SubDenis

Welcome and good to you for

Welcome and good to you for seeking our experience.  We each value different things. I am six+ months into this journey and just recently decided on treatment.  I was convinced surgery way my best choice and with further information am choosing HDR-BT.  I am not trying to sway you in any direction. I do encourage you to take your time. With low-grade disease not too dissimilar from mine you have time. Study the options, think about recovery, think about side effects.  look at the statistics of all treatments for the low-grade disease. The biggest mistake we can make is to rush.  I wish you well. Denis

VascodaGama

Deal with the cancer now and expect it to never return

Mike,

Sorry to say but by the info you share above, I think that your GP was out of touch in 2011 for considering a PSA of 3.9 normal in a 42 years old, and I wonder if the actual urologist is better. No doubts that when a patient trusts his doctor, anything he says is acceptable and one feels peace of mind for seeing things advance in the good direction (?), but that is true if we have the means to evaluate his suggestions. Unfortunately, this is not the case if the patient is not a doctor too. Your story lacks information and has flaws, and misses important aspects crucial in a case of prostate cancer. I hope the newbies reading your thread (just like you did before) do not approach the problem simply by listen and accepting what is suggested to them, without checking on the consequences.

I do understand that the word “cancer” frightens everybody and all we want at the time is to get rid out of it but when the bandit refers to prostate cancer, one need to cold down, think carefully and advance one step at a time. I recommend all to read the exchanged posts in this link;

https://csn.cancer.org/node/313538

Your request for suggestions on after surgery care is welcomed. I hope the many here provides you their experiences. Mine is from a radical open prostatectomy I did in 2000. Did not chose the nerve-spare technique approach because my case was diagnosed as G6 with a voluminous cancer (all needles positive) but high PSA (22.4 ng/ml). ED was, therefore, obvious so I had a sexologist-urologist in the team of doctors to teach me the details. He recommended the use of daily pump, viagra and masturbation to provoke erections. One would risk permanent ED if blood is not supplied to the cavernous area of the penis from the very start. Erections became easier (without artifacts) three months later but it never returned to the original status. The real truth is that nobody returns to erections as one knew them to be. Not even the guys that do nerve-spare surgery ever get the same performance. Our wives need to know and understand that things will become different. Worse cases mean no erections at all and some guys get divorced.
Another effect from RP is losing the ability of naturally fathering a child. I recommend you to bank sperm now at your young age even if you think that you do not want more kids. One never knows what the future brings us.

In terms of incontinence, doctors suggest us to be active with kegels to exercise the muscles leading to the sphincter, and starting the exercise before surgery. In my case I was totally dry since withdrawal of the catheter. This is common in open surgeries but less common in robotics. Maybe the longer period of stay in the hospital for recovery makes the difference. I think that in terms of surgery risks, open provides better assurances of faster normalization because one get the benefits from extra care by experienced nurses and available specialty doctors.
Some guys from robot surgery have reported on abdominal hernias occurrences leading to longer recovery periods. Forcing physical exercises (like kegels) should not be done.

Two weeks after surgery the PSA should be in remission with a value of less than 0.06 ng/ml. That would represent surgery success. However, the most important is to have stable PSA results along the initial six months.

At your 42 years old (2011) your PSA was already suspicious and suggestive of existing cancer, and if we interpreted your comment on your family history as cancer then I think that the GP was crap. He should send you immediately to further investigations. Your urologist seem to be following the typical steps citied in the Urological guidelines which recommend a CT and bone scan, when the PSA is above 10, however he also knows that these exams often provide false negative results when the tumor is tiny in size, even in the presence of a high PSA. Educated urologists nowadays request better image exams proper to identify PCa cases with the status of yours (voluminous case, high PSA). In other words, he is just recommending his trade, surgery. Radiation would be another approach and it would be a better choice if your T1c had been in fact diagnosed as a T3.
I also consider his opinions as crap information. The treatment of choice (surgery or radiation) wouldn’t change a bit if you were ten years older or younger. Treatments for prostate cancer depend on the real status of the patient and the location of the cancer. Surgery can assure cure only in contained cases. Radiation is preferable if the case is localized but not confirmed as contained. The comment that “… If the cancer did return after radiation treatment, there were no options except immunotherapy… “is miss leading and erroneous. After radiation you can do surgery but not all doctors have the required experience. However, in most cases of recurrence after RT the cancer doesn’t reside in the gland anymore. What’s the purpose for removing the gland?

I hope you have a contained case and that you manage to knock down the bandit for good.

Best wishes and luck in your journey.

VGama

 

Steve1961

Hmmm

Wow now I am confused ...I don’t have much faith in either of my urologists.first one was seeing for many years.i think in 2009 2010 first PSA test was high 5.0 digital rectal exam seemed pretty quick to me which I didn’t care and he said seemed ok didn’t feel anything unusual .then yearly PSA test stayed at 5.0 so instead of getting an MRI done to make sure all was good my urologist came to the conclusion that I may just have a higher PSA some men do .in 2014 a second biopsy came back negative PSA still 5.0 ...on a routine visit with my GP he did a reseal exam and seemed like he was in their for 5 minutes lol and said he didn’t feel anything unusual but he did tell me to see another urologist because he was getting complaints about the one I was using ...so I saw another urologist and this time my PSA was 8.1after 26 months on no testing shame on me but thank god it wasn’t higher..3 biopsy was 3 cores positive 3-4 on 2 and 3-3 on one...but the second urologist didn’t explain anything to me at all...I was kinda shocked and didn’t know what to ask ...I found out about  Gleason scores and all that thru here.. but he did set me up with a radiologist who explained it all to me and he recommended surgury...now I have an mri set up on Jan 15th and I am soo upset because I had to wait 6 weeks I guess prostrate had to heal....my big question now is I have2 app with surgeons one at Stanford and one at UCSF...?are these guys urologists as well.i thought that all specialists in any field are surgeons as well.......or do I make an app with a urologist that doesn’t do rad or surgery ...I mean if this ugly beast is contained I was determined to have it out period I really don’t care about any side affects at my age ..sex no dig deal anymore family grandkids and life are more important to me .i am 57 btw ...my urologist and radiation guy seem to think it is most likely contained but now I am s nervous wreck waiting....been getting pains in left cheek after sitting a while or laying on that side and of course I am thinking it has spread which of course I pray not .....sorry for the rant but thanks .

ASAdvocate

No Options?

MikeB1960 said "If the cancer did return after radiation treatment, there were no options except immunotherapy for containment. Basically chemical castration. ".

 

That is not true.  The treatments for failed primary radiation are cryotherapy, HIFU, FLA, SBRT, and HDRBT.  You should have consulted with a radiologist, and not taken the advice of urologists. You should cancel your surgery and get more informed.

Old Salt

MikeB1969

Vasco is usually careful, if not diplomatic, in expressing his view, but his opinion that some of the info that you have received is CRAP agrees with mine. You really need to educate yourself prior to making a treatment decision. ASAdvocate also reflects this vision.

Please re-read Hopeful's long post. It has a lot of good info!

hopeful and optimistic

Surgical Margins/ Treatment after a failed radiation

From; Steve 1961,

"hello I read in a post that you said there are more criteria in mea the competency of a surgeon, ie surgical margins..can u please explain going to meet with surgeons I would like to ask the right question about surgical margins thanks for your time "

There is a difference among surgeons in how close they can come to the prostate when it is removed, some can do an MRI guided, and the surgical margin is about .06 milimeters; without MRI guidance an excellent, experienced  surgeon can accomplish about 0.18,  and very experienced , world recognized surgeon of which there are about ten, sugical margins range from .09 to .12 milimeters. The closer the better. Simply ask the surgeon they will know; additionally they will be impressed by this question.

SBRT(cyberknife, novalis, etc) margins are about , I think, .02 milimeters, a much closer margin; another reason for SBRT radiaiton. Additionally the perimeter of the margin can be adjusted to be greater when there is a more aggressive cancer and the likelyhood that cancer may be immediately outside the prostate, thus having a better chance of cure. Steve, this may be true in your case.

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

Have to say that I agree with Vasco, AS Advocate and Old Salt. There is treatment after a failed radiation; also, what is the point of taking out the prostate after a failed radiation since the cancer is most likely outside the prostate....I never understood the logic of this thought.

RobLee

Primary radiation and post-RT salvage

Mike - I have so much wanted to jump in here and tell my story, as it is in many ways similar to yours. And not doing so it is just eating away at me. But you are a young man, and I wouldn't want to discourage you. And then I'm reading these other guys advising you what to do, and not to worry because there are other options. But please please please do this: before taking advice to have radiation, ask the guy recommending it, or any salvage procedure following radiation, if HE HIMSELF HAS HAD THESE PROCEDURES.

There ARE side effects to these and all forms of intervention... serious side effects, and not all are immediately apparent. Some may not show up until years later. Some may get better with time and some only get worse with age. I live in a seniors community and speak with many men who have had all forms of treatment. This is first hand knowledge, not what was read on the internet (heck, many of them do not even USE the internet).

One thing I have learned is that it's always easy to solve other people's problems when it's not YOU that has the problem. Things are a bit different when YOU are the one who has to live with it. Good luck to you in whatever you may choose to do.

Max Former Hodgkins Stage 3

RobLee said:

Primary radiation and post-RT salvage

Mike - I have so much wanted to jump in here and tell my story, as it is in many ways similar to yours. And not doing so it is just eating away at me. But you are a young man, and I wouldn't want to discourage you. And then I'm reading these other guys advising you what to do, and not to worry because there are other options. But please please please do this: before taking advice to have radiation, ask the guy recommending it, or any salvage procedure following radiation, if HE HIMSELF HAS HAD THESE PROCEDURES.

There ARE side effects to these and all forms of intervention... serious side effects, and not all are immediately apparent. Some may not show up until years later. Some may get better with time and some only get worse with age. I live in a seniors community and speak with many men who have had all forms of treatment. This is first hand knowledge, not what was read on the internet (heck, many of them do not even USE the internet).

One thing I have learned is that it's always easy to solve other people's problems when it's not YOU that has the problem. Things are a bit different when YOU are the one who has to live with it. Good luck to you in whatever you may choose to do.

Generalities

MikeB,

I agree with most of what the guys above have written. And let me add that it seems you are off to a good start in studying the issues and making a treatment choice.  Your particulars with non-aggressive disease are quite common.  What differes some is your age, very young for positive diagnosis in the 40s.  You also express a spiritual aspect to this battle, and mention supportive wife and family...these are priceless. You are viewing the 'big picture,' looking at the situation holistically.

IF you go with DaVinci, as Vasco mentioned, start kegel exercises BEFORE surgery, and then resume after surgery.  A man has 2 urinary spincters before surgery, and one afterward.  It has to be muscled up.  But I had good continence with in two weeks following cath removal.  But each case is different...much longer recovery times are reported.

Again, IF you do surgery, ensure to question the surgeon specifically about his success rate with erectile nerve sparing, alhotugh all surgeons today claim to attempt this.  And verify that he will remove the seminal vesicles.  This is universal also today, but a writer a few months ago stated his doc did not, for reasons unknown. It would have had to be an odd complication, since there is no reason at all to leave in the vesicles once the gland is gone.

Go slow and do what your gut ultimately drives you toward.  There are competing options, and the answer for a guy your age is not simple or obvious for most men, it was not for me.

max