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Hunt2871
Posts: 4
Joined: Mar 2018

Hello to everyone.  I am new to the board but I have been in the active surveillance program at MD Anderson (Houston) for going on 2 years.  I am 52 years old, married with 2 kids (one in college, one in second grade).

My medical info is as follows:

Stage 1 (stage T1c, Gleason 6 (3+3), PSA of 6.9 originally but at 5.6 as of January, 2018. 3/12 cores positive.

MD Anderson did Polaris Genetic Testing on biopsied tissue which showed a 1% probability of mortality at 10 years (as good as it gets according to medical team).

I had a baseline endorectal MRI of the prostate done last July which revealed a volume of 54.86 mL with no lesions to target. No evidence of cancer outside of gland and no evidence of seminal vesicle or lymh node involvement revealed during MRI...again, according to medical team as good as news can be.

Apparently my first PSA test and DRE done at an Army Medical facility in Germany in 2010 was high but I was told that it was normal.  They discovered the discrepancy during an audit and notified me that I shoud be retested in 2015.  My local urologist told me that I probably had cancer at that time so I am going on 8 years most likely. Thankfully my cancer is still in the early stage and the 5 year interval between my initial high PSA test and my eventual diagnosis did no harm and merely saved my wife and I 5 years of worry.

I have a normal sex life for a 52 year old married man (2 - 3 times a week and I still masturbate a couple of times a month).  I do have some urinary flow problems from time to time...especially if I wait too long to go....but thankfully I never wake up in the middle of the night to go to the bathroom).

My medical team says that all treatment options are viable for me.  My local urologist recommends having my prostate removed. I am leaning that way but, like most men, I do not like the idea of erectile dysfunction or incontence for even a brief period of time.  Intellectually I know that either is a better alternative to dying of prostate cancer or having it spread and causing even more problems. I have a 8 year old daughter and a 18 year old son who is a freshman in college and I have every intention of seeing both of them educated, employed and married and bringing some grand babies around the place that I can spoil.....in at least 7 years for him and 17 for her LOL.

I am scheduled for a biopsy in July of this year.  I have only had one, done by my local urologist, and it isn't something I am looking forward to.  I don't know that I am ready to have them done every 24 months for the foreseeable future, let alone every 12 or 6 months, depending on the outcome.

My wife and I are happily married (25 years this May with 5 years of dating and living together before marriage....we have a lot of time invested in our marriage LOL).  We have been through most of the things life presents in 30 years and we still enjoy one another's company....I don't think there is even a slight chance that she would leave me should I become impotent (I assume it happens to almost all men at some point of they are fortunate enough to live long enough) but I do worry about it....performing sexually is important to most men's mental health.  These fears are completely unfounded and she assures me that I am out of my mind but it is still troubling.  This is the main reason I am still in the active surveillance program and have not undergone treatment. I am getting more comfortable with the idea of removing my prostate but I am not there yet.

I guess I am looking for advice, especially from those of you who had your prostate removed and those who have been in active surveillance for extended periods of time.  There is never going to be a convenient time to have surgery so that really isn't a concern but I am also interested in other forms of treatment.  We are very fortunate to live in a period where there are so many options but it is also very overwhelming....it would almost be easier to have a Doctor tell me that I had to have this treatment or else LOL.

My doctor at MD Anderson has done thousands of DaVinci procedures and supposedly has great results with ED and incontenence.  I have great health insurance and thankfully money isn't an issue......I know I sound like a wimp given my diagnosis and personal situation in comparison to others....but this is my diagnosis and situation LOL. Anyone have any advice?

 

 

 

 

 

 

 

 

 

 

edH
Posts: 2
Joined: Mar 2018

I had a RP 6 months ago.  PSA of 4.9, Gleason of 3+3.  I went for the surgery because 6 of 12 samples came back positive and in one year the PSA went from 3.5 to 4.9. The biopsy I had was painless and the only problem was blood in the ejaculate (which went away in 3 weeks). After the operation the Gleason was 7 (I don't know the breakdown).  As long as you get the PSA checked yearly you should be able to stay on top of the problem and address it before it spreads.  In continence was barely an issue (5 weeks after the catheter was removed was all it took for continence to OK) ED is still around but I was told it would take a year for the nerves to heal. I had bilateral nerve sparing surgrey. All the info I read says to find the surgeon who does the most operations. (the guy I  had has over 5,000!)  I think that goes for who ever does the biopsy also.  Good Luck.

Hunt2871
Posts: 4
Joined: Mar 2018

Thanks for the reply.  The surgeon I am seeing at MD Anderson has done thousands of DaVinci procedures and comes highly recommended from other patients.  Ive only had one biopsy and it wasn't unbearable but it isn't something Id want to do everyday!  I had blood in my ejaculate for about 3 months afterwards....and my local urologist failed to mention it so the first time was very shocking....my wife and I thought for certain we had broken something!  They are currently only recommending biopsies every 24 months.....I am scheduled for the second on in July.  I was told that the norm was every 12 monts but given the "stability" of my PSA and the results of the Polaris testing they were comfortable with doing the second one at 24 months and going from there.  If it is moved up to every 12 months I will be leaning more toward surgery.  I live 12 hours from MD Anderson (in New Mexico) so I have to fly to Houston for all check ups and any treatments.  I woulve been able to fly (about a 2 hour flight) immediately after the first biopsy (it wouldn't have been the most comfortable thing to do but not unbearable) but I biopsies will probably cause me to stay over night simply for the sake of comfort (I fly over and back in the same day for normal visits and even for the MRI).

lighterwood67's picture
lighterwood67
Posts: 159
Joined: Feb 2018

I am 67.  Gleason 4+3=7.  I had my prostate removed on 3/20/2018.  My choice was made when the upper left apex of the prostate started to push on the bladder.  The pathology after surgery looks like it was contained.  If you like reading that kind of stuff, pleaae look at my Description of procedure RP 3/20/2018 on this site. It gives a pretty good picture of the surgery.  Looks like you have time to look at a lot of options.  Did you have a MRI before your biopsies?  Hope this helps.

Old Salt
Posts: 720
Joined: Aug 2014

So far this thread is all about whether to have surgery (or not), but there are other very reasonable options. Even the American Urological Association states in their guideline that one should consider radiotherapy options for low-grade, localized prostate cancer:

https://www.auanet.org/guidelines/clinically-localized-prostate-cancer-new-(aua/astro/suo-guideline-2017)

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I am now starting the 10th year of Active Surveillance.

There is a man who staarted in the AS program where I am treated when he was still in his thirties. I think that this was about 15 years ago. since then, he and his wife have had a child.

There is a difference between biopsy capability. Now there are sophisticated biopsies that are available, that is a MRI guided biopsy to a three dimensional biopsy machine, so one can have more confidence in the outcome, and since this type biopsy is much better than a random ultrasound that is done in most doctors offices, one can have a biopsy less frequently.

All active treatments have the potential of major side effects, and YOU as a relatively young man would have to suffer these consequences for a long, long time.

Studies have shown that Gleason 6's do not metatasize, that is go outside the capsule; only in the case where there is a lot of 6...in those cases there may be a Gleason 4 that is  hiding

Here is a thread that i suggest you read...please pay careful attention to the comment that ASAdvocate made.

https://csn.cancer.org/node/315522

I for one plan to continue with AS the rest of my life which is highly possible without any side effects of active treatment. Autopsy studies indicate that many men die with, not because of prostate cancer...google autopsy study prostate cancer detroit

I suggest that you attend local support groups, ustoo sponsors local groups worldwide, for info. Research, read books, etc.

sso far you have had five years of quality life,,,,,,keep it up.

Best

ASAdvocate
Posts: 108
Joined: Apr 2017

You have several options should you need treatment in the future. There are many tales of "treatment regret" that are told in local support groups and on the internet. Every one of them involves men who chose surgery after only consulting one urologist, who either did not discuss other types of treatment, or dismissed them.

Urologists are surgeons, that's what they do. And, they are often uniformed about radiation.  Of course, they will recommend surgery.

But, recent statistics show that the same percentage of men are choosing radiation as are choosing surgery. That's probably because they researched their options. You should do that too, especially learning about the cure rates and side effects of SBRT and High Dose Brachytherapy compared to surgery.

Please do some research, and be prepared to consult with some radiation oncologists if treatment ever becomes necessary.

 

 

Clevelandguy
Posts: 390
Joined: Jun 2015

Hi Hunt,

It basically breaks down into two treatment options or continue on AS.  Surgery is a valid option but can have varied amount of side effects sometimes good, sometimes bad.  If you want to go the surgery route make sure you pick a surgeon that has performed hundreds-thousands of RP's to make sure you leverage the surgeons knowledge & expertise.  I had Davinci surgery back in 2014 and it took me about 1.5 years to get back to "normal" from the ED with constant improvement over that 1.5 yr. timeframe.  I still have a slight stress urine leakage that I wear a light pad for daily just to catch the dribbles when I move wierd or strain. But ya know I sleep very well at night knowing(I hope) the cancer is out of my body.  I did not want to wait months to years with radiation doing the slow PSA decline or the possible risks of future side effects.  But thats just me.  Some people from surgery or radiation have remarkable recoveries with very little side effects and other have permanent Ed or leakage.  Again I think a lot of that depends on the amount of cancer they have to carve out of you and the skill of the surgeon.

Radiation usually has fewer side effects during treatment but can have latent side effects, bowel lesions, bladder problems, or later on in life cancers due to the radiation beam hitting non cancerous tissue and altering it's cell structure.  As with surgery the results vary with almost no problems to major ones later on.

AS as you know requires repeated biopsy's while the cancer is still inside your body, something I did not like or want. Other men thinks it's OK and they will die of something else before the cancer progresses, valid point depending on the agressiveness and your age.

You need to study the side effects and discuss with your family and doctors to find the best treament options for you.  There is no correct best choice to remove the cancer but you must understand the risks for each treament method.  I would recommend that you go to the websites of the manufactures that make the treatment machines(Cyberkife, Davinci) and study the risks, at 3+3 you have time to do a good job on your homework that will lead you to YOUR correct choice.  Don't let people sway you by putting down one or more of the treament methods, you need to decide for yourself. It's your body and yu must live with the results.   Good luck in your journey, if you have more questions let us know, there is a lot of experiece in this message board for all of the various treatment options.

Dave 3+4

graycloud
Posts: 29
Joined: Jan 2018

My husband was on active surveillance for almost 3 years.  He had a steady rise in PSA/family history.  2 MRI guided biopies the first two years, then the "big" biopsy fall of last year.  His urologist tested his PSA every 3 months for the past two years, and MRI yearly.  Have you talked with your doctors about imaging and more frequent PSA tests versus biopsy especially with a 3 +3?  I would opt for a larger facility that is experienced in prostate cancer treatment to do the biopsy.  In hindsight,  we should have gone to the "big guns" earlier (Memorial Sloan Kettering) versus having our local doctor to perform his last biopsy.  The Pathology labs locally classified his results as a 4 + 3.  My husband wanted to do the Ablation Study at MSK.  They reviewed and re-tested tissues from his biopsy.  They classified as a 4 +5 - Johns Hopkins did as well.  This took us on a different path of treatment.   You can read my husband's history if you look at my recent posts.  He had robotic surgery at Memorial Sloan Kettering on 1/30.  He's doing great now - this has been his best week post surgery - he's 8 weeks post surgery today.  So I guess my view is to start meeting one on one with the doctors at MD Anderson.  Maybe make some appointments with other big guns to find the best plan.  There are two approved Ablation studies at MSK and Mayo.  That was my husband's first choice for treatment, but here we are today with a different plan. 

Hunt2871
Posts: 4
Joined: Mar 2018

For the advice and most importantly the support.  My wife and I have spent the last two years with an "its only prostate cancer" mentality....but we are both aware that "only prostate cancer" is a horrible idea....it still cancer and a leading cause of death. 

When I fist posted to this forum I was leaning heavily toward surgery....just get it out and over with.  I am now leaning on AS for at least another couple of years, depending on biopsy results in July.  I also like the idea of getting some more opinions from other "big" prostate cancer treatment hospitals.  There is nothing for me locally....my local urologist even suggested my going to USC and having surgery immediately upon my diagnosis 2 years ago.  He told me he wouldn't do the surgery locally (including Texas Tech in Lubbock) and it it were him he would only have the surgery done by a friend and associate at USC. 

I have talked to radioogists at MD Anderson and all of those options are open to me as well, thankfully.  Like all PC patients I am finding that there are plenty of options but none are a clear cut choice.....a great situation compared to, say, stage 4 lung cancer where options are limited and a treatment path has to be determined immediately to have a chance of survival.  That being said it is also very overwhelming. It is amazing to me, considering the number of men involved and the paternalistic nature of our society, that there is not an almost guaranteed cure for PC that is by far the gold standard of treatment.  This speaks volumes about the difficulties involved in finding said cure.  Maybe someday soon!

As for now I am going to continue AS and, depending on test results over the next couple of months continue to research treatment options, communicate with my wife and seek opinions from other PC patients and medical professionals as well.  I'm also going to enjoy life to the fullest and try not to obssess about cancer......there are lots of people born in 1965 who are no longer with us.....I am blessed with a wonderful life, fulfilling career....and most importantly the insurance and financial ability to treat my cancer in whatever way my wife, medical team and myself determine is best for us. 

 

I wish all of you the best in your recoveries or in your treatment.  Thank you all for the support, advice, and allowing me to "vent" with others who are in similar situations.

 

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

Aloha Hunt2871

If you're already in Houston, please check out Dr. Karamanian with the Prostate Laser Center in Houston. Last ablation is not a silver bullet. Not all men qualify, but you and I are very similar except I was successfully treated a week ago Tuesday for prostate cancer (albeit future MRI's and PSA tests will tell for sure). The pro's is that everything works like it did before and I am already back to work without any measurable side effects (I'm supposed to take it easy). Warning! But on the negative side the con's is HUGE. I had to pay out of pocket. Insurance does not cover this procedure. Bottom line, so I don't buy a new car for a while. Who cares? I am a cancer survivor!

Peace and blessings to you!

Doug

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