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New diagnosis - I am 52

spudboi
Posts: 1
Joined: Jul 2016

I am 52 and just found out on June 23rd that I have prostate cancer.  stage T2a PSA = 6.4 Gleason 3+4=7 13 of 14 biopsy samples were positive, one benign, one 3+3 one 4+3 and the rest 3+4, sample percentages were all 60% or higher.  

I have Kaiser and have met with my primary urologist, a radiation oncologist and a surgeon.  They all think I should have the surgery and they plan to biopsy a few lymph nodes at the same time.  Due to the pervasiveness of the cancer I am not a great candidate for nerve sparing surgery but the surgeon will try to save enough nerves to help with potential incontinence. 

I am getting a second opinion with a Kaiser doc (urology oncologist) who recently worked at Stanford.

My surgeon has done 420 DaVinci procedures in the last 9 years and has an opening as early as 7/26.  Unfortunately he is booked all of Aug so the next date would be Sept 1st.  He is suggesting it's better that I don't wait. 

It's all happening pretty fast.... any thoughts?

thanks for your help and support

 

 

VascodaGama's picture
VascodaGama
Posts: 3012
Joined: Nov 2010

Spudboi,

Welcome to the board. At 52 years old you are confronting a process that may prejudice your quality of life forever. Be cautious and do not accept any proposal without knowing details (pros and cons) of what has been proposed. Try to educate about the disease and get second opinions from different specialist.
Urologists are set to recommend you surgery as much as radiologists would recommend radiotherapy. It would be interesting if you have said that your surgeon has suggested for you to do radiation the soonest. LoL

From the information you shared above, your Gleason score is (4+3) 7 signifying that there is an high risk for existing metastases, and therefore lesser probabilities for a contained case. In such respect, one should look for a treatment that better can address his status. Surgery is best when the cancer is whole inside the gland (contained). Dissecting the gland it would dissect the cancer. In extra prostatic extension cases (not contained) radiation therapy has higher points for success. Accordingly, Gleason 7 cases (intermediate risk) in voluminous cancer case (13 cores positive out of 14 with 60% or higher involvement) need more careful examinations on the options. The pathologist findings should be reviewed and the clinical stage (T2a) needs more specific tests. T2a stands for cancer found in only half of one of the lobes of the prostate gland. I think it to be an error. The biopsy of 14 samples were not directed to just a portion of the gland (one lobe). Probably you meant T2c.

In your shoes I would not sign or reserve surgery to be done that fast (July 26) even if the surgeon is fully booked for August. Prostate cancer does not spread overnight. The therapy of your choice and the outcomes would not differ if that was done in three months time.

I would recommend you to research about image studies that can provide better diagnosis of your case. Having surgery to diagnose the lymph nodes is not proper. You can dissect some without major incisions. PET scans can also reveal metastases to a certain extent. Would Kaiser cover these type of exam? 

Regarding treatments, these are linked to risks and side effects that you should know in advance. Surgery is very much linked to incontinence and ED (erection dysfunction), even if one opts for the nerve spare technique. Radiation is linked to colitis and prostatitis. Both treatments may jeopardy your possibility in fathering a child again.

Here is a site that may help you understanding details;

http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

Best wishes and luck in your journey.

VGama

Will Doran
Posts: 207
Joined: Sep 2015

Spudboi,

Very sorry to hear of your diagnosis.

As VG said, Take your time.  Study and learn all you can.  Check with as many doctors as you can.  Look at the possabilites of radiation, surgey etc.  Check all forms of treatment.  Our cases are all different. 

I was diagnosed in Aug of 2013, at the age ot 67.  I had no symptoms, but it was found that I had a PSA of 69, when first diagonsed. My Gleason was 3+4-7.   I paniced and wanted the cancer gone.  I was ready to have the surgery right away.  My urologist would not do it that soon.  He wanted me to see the Radiation Oncologists first.  Which I did.  Then I was convinced that I was going to do the radioactive seeds and other radiation.  However, something told me to have the surgery, a little later in my study.  So, I had a DaVinci, Robotic Assisted surgey in December 2013. The surgery took 5 1/2 hours because of previous hernia repairs (mesh) and my muscle development from being a road cyclist.   Turned out the radioactive seeds wouldn't have worked because of a birth defect, in that my prostate was adhered to my bladder.  So, they couldn't have gotten the seeds where they were needed.  From August  until December seemed like forever.  In my case, the surgery was the only answer.  My PSA dropped to <0.010 in two months post surgery.  It remains at that level to this day.  I had one lymph node involved. I was listed as a high, aggresive Stage 3 ( I forget the the exact numbers, I think a T3b1?).  40% of the prostate was involved. So, I had 8 weeks of radiation, post surgery, and was on Lupron for two years. They treated me very aggresively as if I were an advanced Stage 4.  I've been off the Lupron for 5 months at this point, and my PSA is still holding at "0".  My testosterone has started to come back up. They had my "T" clear down to 17.  Normal is between 250 & 1,000.  When last checked my "T" levels had come up to 140 ish.   So, we are watching very carefully to see if the PSA stays at "0"or starts to rise.  My next appointment for blood work and check up is in August (2016).  My doctors are hopeful that I remain a "Big 0".  If not, then we have to look at going back on some sort of hormone therapy (ADT)

So, don't make any snap decisions.  Make sure and explore all treatments and ask tons of questions.  Make sure you are ready and understand all the side effects of  the surgery, the radiation and hormone therapy, so you know what to expect.  Make sure and think about your quality of life.  This is a tough battle. You are at the right place on the web site to ask questions, So ask as much as you want. Those here will help as much as we can.

Know that you are in my Thoughts and Prayers

Fight like the devil.

Peace and God Bless

Will

Swingshiftworker
Posts: 1013
Joined: Mar 2010

If so, ask for a referral to the Kaiser NorCal CyberKnife center in SSF to see if you may be an appropriate candidate for CyberKnife radiation treatment of your prostate cancer.  You'll have a much better probability of a full remission w/o any of the major potential side effects from surgery, if you do.

BTW, IMO there is nothing worst than surgery for the treatment of prostate cancer and I would avoid undergoing surgery for prostate at all costs.  That's what I did.  I was a Kaiser patient when I was diagnosed w/PCA in Jan 2010 (Gleason 6).  The only options presented to me by Kaiser were surgery (in Oakland) or brachytherapy (in Roseville).  The CK center in SSF existed but was not doing PCa treatment at that time.  I didn't like the choices and quit Kaiser to join Blue Shield so that I could get CK at UCSF in Sep 2010.  I am currently in remission w/a PSA level below 1 and still dropping.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Spudboi,

I cannot disagree with anything Vasco or Will suggested to you.

You are far toward the younger end of age for newly-diagnosed PCa patients, since the mean age at diagnosis for PCa in the US is 67.   You also test toward the more aggressive end of the diagnostic spectrum, especially as regards volume.  It is interesting that your radiation oncologist recommended surgery. This would suggest (but not prove) that he believes the disease is still encapsulated for some reason.

I had DaVinci removal two years ago, after I also met with a radiation guy.  My situation suggested that either treatment was 50/50 in liklihood toward curative effect.  My case was objectively less serious than your's however, since I had only one positive core, at 5%, and a Gleason of 6. My doctor had done 900 DaVincis at that time, but any surgeon who has done 200 or more is considered in the field as "well experienced."  Dr. Scardinos, Chief of Surgery at Sloan-Kittering in NYC, wrote that the simple fact that a surgeon has done a lot of surgeries does not necessarily make him better than a less experienced surgeon, because some surgeons have undesirable traits that they never evolve out of.  What matters most is the satisfaction they provide to the patients they have operated on.

The radiaton oncologist who I consulted with made an observation that I found memorable. I had met him prior and regard him highly.  He said that logically and rationally, a man with prostate cancer would have three priorities, and have them in this order:  (1) Cure the disease, if possible; (2) remain or regain urinary continence; (3) remain or regain potency.  To me, having know a lot of prostate cancer patients, and having read here for a few years, the saddest cases are not the men who have to wear a pad, or who can no longer have sex.  The saddest are the relatively middle-aged guys who are in late metastatic disease, and dying, running out of currently available options.  My resolution when I started this was to not be in that latter category if possible in my case.  You must have your own individual priorites and decide what most matters to you.

Younger guys are better suited to surgery, especially if in good health, than are older men.  Surgery is better for encapsulated disease, and less recommended for extra-capsular cases, but if the node farming reveals node involvement, radiation can still be performed to the immediate area (usually called the "prostate bed").  Surgery is better than radiation therapy in avoiding later urinary stricture issues, such as often occur in glands that are vastly enlarged.  Surgery is the most likely to cause impotence, if indeed the surggeon has to cut out the erectile nerves.  My case:  I regained continence fast, within a nonth I was 95% contintent.  I regained potency within about a year, I would say equal to 85% of my presurgical situation. I was 58 at the time of surgery.  Moving into old age, a guy declines in these ares anyway.

Radiation, in conventional, default reasoning in most journals, is suggested as the first-line response for guys with disease outside the gland.  You would receive either IGRT or IMRT very likely, since Cyberknife is seldom used in cases that have exited the gland. The problem is knowing whether it has exited the gland, and knowing this for certain is still close to impossible.    Radiation also can cause some urinary issues, and while it does not cause immediate impotence like surgery does, can cause impotence later on.  Less common than surgery, but it still occurs in some cases.

It is good that you are going for the additional opinions.  As they mentioned, there is no need to rush.  Decide systematically; create a matrix and prioritize what matters most and least, weight them in their value to you.  This is how Charles Darwin decided to get married. He could not decide, and created a chart, and mathematically weighted each pro and con; the decision was an algebra equation for him, with no emotion involved.  But gut instince, and the doctor whose advice you most trust is what seals the deal for most guys; it is what decided for me.

The "conventional wisdoms" in PCa are derived from the fact that it first occures in older men, and presents with less aggressive numbers.  Your's has occured in a younger guy, with more aggressive numbers.  Adjust accordingly. 

I have "no dog in this hunt."   I will not be affected by your decision, am not a doctor, do not sell medical equipment. Some guys advocate or swear by what has worked well for them: this therapy, or that one, or that other one over there. I am just relating my experiences.  Despite being a "DaVinci Guy" myself, I think in your case I would lean toward radiation therapy, but continue listening to the doctors, and asking questions.  Luckily, you have an assortment of viable choices.

max

 

.

 

Will Doran
Posts: 207
Joined: Sep 2015

Spudboi,

I should also mention that your physical condition is very important. You are considered young, as Max suggested.  When I was diagnosed, I was at that time riding road racing bicycles and practicing "Drafting" with the student cycling kids at Penn State University. Being 6 foot 2 inches tall and weighing 200 lbs, I could break a big hole in the air for the other guys, and sometimes girls.   My urologist suggested surgey, because, in his words, of my "youth and physical condition".  Of course I laughed at the time, since I was 67.  I was sent home the very next day, post surgery.  My urologist came in to see me the night of the surgery at about 10:30 PM after he had finished up with the surgeries of the day. I was sitting up in bed watching a soccer match on TV and readingHe laughed, as did I.  He said that if we had done the surgery the "Old Way" I would have been flat on my back for about 4 days.   He told me he wanted me to start walking short distances after the second day, post surgery.  I had no exterior stitches on the 5 incision used for the robotic surgery.  My surgeon used glue on the outside.    We had purchased a Treadmill, in preperation for recovery, and I did as instructed. In a weeks time I was up to 30 minutes on the treadmill per day and kept increasing the lenght of time per day, until I got to over 1 hour per day.  My surgeon wanted me to stay off of a bike seat for 8 weeks. I kept "bugging" him as to when I could get back on a bike.   However as I progressed / recovered, He allowed me to get back on a bike seat at 6 weeks post surgery.   I didn't feel secure enough to get back on a road bike, but I am on a spinner, trainer bike for up to 100 minute per day.  I continue to work out a the gym on the weight machines and do my free weights and Physical Therapy Exercises here at home.  My doctors were and are still puzzled by my progress. 

So, if your doctors are suggesting surgery, It's as Max said becasue of your "youth", to use my doctors words. If you would decide to do the surgery, you must exercise when you are able to.  I pushed it and it payed off, so far.  Your doctors can advise you on what , when and how soon you can get back "in action", whatever you chosen work out would be. 

Again, don't make any snap decisions,  Take enough time to decide on what's right for you.

Peace and God Bless

Will

MEtoAZ
Posts: 37
Joined: Feb 2016

That was in January of this year (January 7th to be exact).  My urologist likewise wanted to schedule surgery and we initially scheduled for Feb 2nd and I spent the next week doing the "pre-op" testing like chest Xrays, clearance for surgery, etc.  In the process, my PCP made a few recommendations for second opitions and I pursued several.  I went to a radiation oncologist, MD Anderson Cancer Center where I saw another Radiation Oncologist and another urologist and also spoke at length with people from cancer treatment centers of America.  All leaned towards the surgery approach so I rescheduled surgery for April as all those consults took some time.  I did check out HIFU which, while probably viable, I did not want to do outside of US with latest tech.  I had one more referral, Phoenix Cyberknife.  I almost cancelled that referral until I saw some posts on here about its success.

I went there and ultimately had the Cyberknife radiation over 5 45 minute treatments.  The biggest inconvenience during that time was the low gas diet that essentially meant you ate next to nothing.  I lost 11 pounds in 9 days!  Next week I have my first PSA test post radiation and then followup with doctors the following weeks. 

My cancer was also 2a, but I had Gleason scores of 3+4 and 3+3 only two cores out of 12, with two more being "abnormal" those two were located along the side and doctors thought they might not be able to do nerve sparing on that side.  One of the points my Cyberknife doctor made was that with the preceision of Cyberknife (sub-mm), they can also target along the outside edges of the Prostate where necessary.

Many, many people opt for surgery and have good outcomes, cancer-wise.  However, as you read many of the posts here on this forum and others, doctors seem to downplay the potential for side effects.  Cyberknife now has an equivilent "cure" rate of 93% over 10 years WITHOUT hormone therapy before treatment for Stage 2a or lower.  Hormone therapy will give you another percent or two.  In my case, I didn't think the extra 1 to 2 % warranted the additional side effects that come with hormone treatment even though my Cyberknife doctor pushed for it.  I have no side-effcets from the treatment at this time and that is pretty consistent with most other experiences.  There are exceptions, but they are MUCH rarer than with surgery.  As a 52 year old, my concern about the negative side effects was one of the primary influencers for my decision.

As others have said, this is ultimately your decision.  Each doctor will likely perform well with the treatment option they recommend.  However, each doctor will lean towards what they do as that is going to be their natural bias although normal radiaiton is not recommended for people our age, although in your case, they may still want to do radiation post surgery which is something else you need to consider.  Prostate Cancer is generally slow growing although your Gleason score of 4+3 indicates a more aggressive cancer.  You don't have to make a decision in a week.  Once you do make your decision, be at peace with it and press on!

If you would like to speak with me further about my own experience since we are starting in a similar status, I would be happy to share what I went through in more detail, just reply to this thread and I will provide you with some contact details.  Best wishes for a cancer-free outcome!

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

The side effects of multiple treatment are cummulative; that is if you have surgery and suffer side effects, then have another treatment such as radiation you will suffer additional side effects.

Surgery is primarily done for prostate cancer that is contained in the prostate; in your case it is very possible that the cancer has escaped the prostate, so if you have surgery, you will still have cancer that needs to be treated.

As Swing mentioned, SBRT aka cyberknife, novalis, etc will do the job. So will IMRT or another external radiation process. The perimeter of radiaiton can be adjusted to be outside the prostate, so there is a greater range of treatment.

Before treatment, it is advisable to have image tests , ie T3 MRI or a pet scan to give an indication if the cancer has excaped the prostate. Unfortunately, Kaiser does not offer these tests to their patients. Most other medcial coverages do.

Please feel free to ask or discuss any issues that you might have. We are here for you.

hunter49
Posts: 210
Joined: Oct 2011

Welcome to the party pal.  ( obviously a fan of Die Hard).  Seriously sorry for your diagnosis .  I got diagnosed at 49 similar except I was 3 of 15 cores posative and was a 3+4.  Your Gleason is a bad 7 (4+3).  If only one is a that way that is what you are.  Where there any tertiary patterns?  Also, was vasaculaar or peninural invasion present.  After my surgery I was upgraded to a 4+3 and from a T1c to a T2c but no posative margins and no lymph nodes present.  This is a funny disease there can be micro matastisis even if all clean and you can have a biochemical failure years later.  Did you have any scans and any prvious PSA tests?  If so, what where they and when. You really should not wait as it sounds like you have a high volume disease. However, look into Hopkins they have a vaccine that they give prior to surgery that has been having great results with on preventing any failures.  As for nerve sparing I would request it.  If the disease has escaped I really do not believe it matters.  They can always do salvage radiation.  The surgery was easy, I was back at work in1 week.  Do your keegles all the time to help prevent  incontinence.  Good luck aman and if you have any questions let me know.

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