CSN Login
Members Online: 8

You are here

Just diagnosed

Hopful
Posts: 5
Joined: Apr 2016

Just diagnosed with prostate cancer. Pathology report are as follows 

Adenocarcinoma, Gleason pattern 3 plus 4 (both right & left).

Involvement (right prostate )- 11/15, 4/16 and 2/19 mm. Chronic inflammation with chronic prostatitis noted. Did not identify definite perineural space involvement by carcinoma. 

Involvement (left  prostate )- 1/19, 0.7/11, 10/17 and 4/19. Focal perineural space involvement by carcinoma identified. Areas of chronic inflammation are identified. 

Psa is 7.38. Urologist wants to perform robotic surgery . I have an appointment with another urologist at the same medical group to get 2nd opinion. 

I appreciate input from people with similar test result. Which treatment they received & their satisfaction /disappointment  so far. 

 

 

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

I am sorry to say it but your thread made me laugh. Choosing a treatment for prostate cancer is a more serious affair than a simple “purchase” of a commodity with which one could be satisfied or disappointed. You may have received such “simplicity” impression from your urologist because he suggested robotic surgery without any established clinical stage. However, without a proper diagnose on one's status, one enters into the “world of guessing”. Luck must be in one’s side to expect to be more "satisfacted" than disappointed, after the treatment.

From the data you share I think that 7 cores out of 12 (????) were positive which makes your case into a voluminous cancer status. Gleason score of 7 is a classification given to intermediate risk for possibilities of existing extra prostatic extensions, which, if existing, would turn the surgery option into a none satisfactory intervention.

I would recommend you to get an image study (ies) done with high sophisticate equipment to have a more reliable exam so that your doctor can get better information of cancer location and then attribute you a proper clinical stage. Once with this in hand you would be then ready to look for a treatment that would satisfy you. PET scan and 3t-MRI are the best ways for an exam you could demand.

I also would recommend you to get second opinions from doctors away from your initial urologist, now suggesting a robotic treatment. You can even recheck the data from the biopsy at a different laboratory (eg; Johns Hopkins) and get there an opinion.

In the end, one could have a great surgery and become cured but become handicapped due to a secondary effect caused by the intervention. “Satisfacted but disappointed”.

Best wishes and luck in your journey.

Welcome to the board.

VGama

 

Old Salt
Posts: 720
Joined: Aug 2014

Unfortunately, you have joined our brotherhood of prostate cancer patients. We are not MDs, and our advice is generally well-meaning but based on our own experiences. Which are many. This brings me to the point that I want to make. Based on the description of the biopsy, there are many (!) approaches for a successful intervention. Surgery is not the only one. Please consider all options, after having consulted with other specialists, especially radiation oncologists. Urologists are surgeons and surgery is what they recommend, generally speaking.

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

I am sorry for your diagnosis, and that you have to post here, but we are here for you. Please feel free to ask questions, and speak to your concerns. We will do our best to answer.

To emphasize, you are going to a second urologist in the same group( I doubt if you will receive an answer any different from the first urologist, since they have the same specialty, within the same group); it is important for you to interview doctors in other specialties as old salt suggested . Basically urologist will recommend surgery, radiation oncologists will recommend radiation, etc.

To be honest the side effects of surgery are greater than any other type treatment for prostate cancer. The side effects include but are not limited to erective disfunction (which the chances of, increase by age) and incontinence.

Please let us know your age.

.By the way,there is a  radiation treatment that some at this board have had a lot of sucdess with, this is SBRT (aka Cyberknife, Novaliis) which is given in 4 or 5 sessions; after each session one can continue with their regular activites with no side effects. This radiaiton treatment is the most precise of all radiaton treatments. The cure rate is high.

Vasco gave excellent advice to get a second opinion about your biopsy, and to obtain imaging tests so you will have a better idea of what is going on. For example the imaging test can give some indication of how extensive the cancer is within the prostate, and if there is extracapsular extension which will be a major factor in choosing a treatment type.

It is important for you to educate about this beast and treatments so you can make a best decision. So read books, internet research, attend a local support group. There is an international organization ustoo.org that sponsors local support groups. you can go to their site in order to help find a group in your area. .  Additionally ustoo, publishes a monthly newsletter that is very informative called "hotsheet" which you can find at their site.

Wish you the best,

h&o

 

MurrietaJimmy
Posts: 2
Joined: Apr 2016

I'm also looking for some input.  It's quite depressing, but we just need to move forward.  I'm leaning toward radiation, unless it's spread and I won't find out until the end of the month.  If so, then chemo.  Gosh, I just hope it hasn't spread.  Basically - this sucks.  Take care of yourself.

Will Doran
Posts: 207
Joined: Sep 2015

I just replied to Jimmy, above.  You can read my reply on his post, above (Also--Just Diagnosed).

My case was as follows (cut and pasted from Jimmy's post):

I was diagnosed two and a half years ago, at the age of 67.  I had a PSA of 69.  My Gleason Score was (3+4) 7. I had had no symptoms that I had a problem.. I had a Robotic Assisted Prostatectomy in Dec 2013.  My PSA went to <0.010 in two months.  I had 8 weeks, 5 days per week, of Radiation and have been on Lupron for two years.  I am now off the Lupron and so far my PSA is staying "0".  There was 40% involvment of the prostate, and one lymph node involved.  So, I was diagnosed as an early Stage 4.  My MRI's are still clear and there has been no involvent of bones, at this point.  So, there is hope for help fighting this disease.  The fight is hard and some times very frustrating. 

Our cases are all different and what works for one person might not work for another.  I went with the surgery because a wanted the cancer gone.   Turned out the Radio Active Seeds wouldn't have worked because of a birth defect, that my Prostate was adhered to my bladder. They couldn't have gotten all the seeds located where would have needed to be.   

This is a hard fight.   But don't give up. Learn all you can about the treatments and all of the side effects.  Many of the side effects are worse than the disease, as many of us know.  But that's just the way this all goes. 

Know you have friends / brothers here and we are all thinking and praying for you.

Fight as hard as you can.

Peace and God Bless

Will

Hopful
Posts: 5
Joined: Apr 2016

Thank you very much for kind words and helpful input.

I  will get 2nd opinion from a urologist not associated with the medical group my current urologist is in. I tried to get an appointment with  a radiation oncologist and was told I need a referral. I will request pet scan and 3t mri.  I will get both if medicare will cover the cost. I can only do one if out of pocket. I am 66.

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

I have had several done, all covered by medicare

Since the results for my MRI's have been negative, and I have a low volume, low aggressive disease, I have never had a PET Scan.

My layman's opinion is that  you  have the t3 multiparametric MRI by an experienced organization, and radialogist who is very experienced in reading the results. As a lay person, I suggest that you have the T3 MRI and if the results are negative, not pursue the PET SCAN. Of course the professionals on your medical team may think different.  

There are different types of PET SCANS that are available, done in different ways. Some better than others. If you reach a point where you may need one, come back to us for input.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Welcome, Hopeful.

Fortunately the fight against PCa ordinarily is indeed  full of hope.

As Vasco noted, with as much volume involved with the disease and a Gleason of 7, your case is serious. Not horrific, but significant.

What most caught my attention in your report is that one side of the gland indicated perineural involvement.  This means that the disease has followed nerve tissue out of the capsule. This demands high quality imaging to attempt to see if the disease has spread.  Cases in which cancer has spread ordinarily suggest radiation verses surgical removal.  Any man with any stage of newly diagnosed PCa owes it to himself to also speak with a radiation oncologist in addition to his urologist.  If you see 100 urologists you are likely to get pretty close to 100 recommendations for surgery.   Consult with a radiation oncologist also.

max

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Hopeful,

I think you are in the good track and thinking well. I do not know how Medicare works but you can inquire about coverage at the places you will call for appointments, consultations (second opinions). My recommendation would be to have it done at prostate cancer (PCa) specialists’ hospitals/clinics, where they can provide those exams (c11-PET or mp-MRI or 3t-MRI), covered by Medicare. For the moment you only need to have one of those image studies, but you should have it done because of the voluminous status. The chronic inflammation and chronic prostatitis may be a cause of the high PSA of 7.38; such would lead to think that the "real" PSA is lower so that a traditional CT or MRI would not detect the cancer. In these cases some doctors skip image studies and provide clinical stages based solo on the pathologist’s report.

I think you and your family is worried and may want to have an intervention the soonest but there are several choices to treat PCa which should be chosen according to the clinical stage and the health status of the patient. Age, other illnesses, fitness, financial matters, etc, all may influence the way we lead our case. The treatments also have risks and cause side effects which ones you may want to avoid. One should consider it all and discuss with his family to gather opinions so that one will gain confidence and reach to a final decision. Do things timely and coordinately. Prostate cancer does not spread overnight. You need to act soon but you have enough time to get that proper diagnosis and be comfortable with the choice.

We may have similar cases and treat them differently. I had a voluminous cancer (all needles positive) but a low Gleason score (2+3) 6, high PSA (22.4 ng/ml). It took me 2.5 months to decide, after several second opinions from specialists, much reading and researching. The lack of reliable imaging equipment back in 2000 made many like me and the doctors to get false negatives leading patients to think that they had contained cases. It was the times of “guessing” when surgery was considered the golden standard therapy. Soon after I recurred and had salvage radiotherapy. This is already 16 years on the run (now 66 years old).

I recommend you to educate on the matters of prostate cancer. In this forum there are many guys with similar cases as that of yours. Some have follow surgery and other radiotherapy. Many were successful in getting rid of the cancer. You can try reading about their cases in past threads. Two good articles describing all the processes in prostate cancer prevention, care and treatment that may help you understanding things better (one is just a practical guide), are the following;

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

http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958

It will be advisable for you to prepare a list of questions to expose to the doctors when you go around. Here are some ideas to your list;

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

 

Best wishes,

 

VGama

 

Will Doran
Posts: 207
Joined: Sep 2015

Hopeful,

 I agree with Max.  Make Sure and talk to Radiation Oncologists before you make a decision.  My Urologist /Surgeon (Dr. M-----),   INSISTED that I see a Radiation Oncologist before I made my desision.  I was ready to have the surgery done before I even talked to the Radiation Oncologists.  Then when I went to Radiation Oncology, I thought I would go the Radiation Route.  However, the longer I thought about it, I wanted the cancer gone.  As I stated, as the surgery went along, My urologist / surgeon said he would have been the one to implant the seeds, and he & Dr. D------ (Radiation Onclogist) coudn't have gotten the seeds where they needed to be to stop the cancer in one section of my prostatate.  As I said, that problem was becasue of a birth defect where the prostate was adhered to the bladder.  As follow up to the surgery I had 8 weeks of radiation and ADT (Lupron for 2 years).  When I went in for the pre treatment work and tattoos ( to align the machinery) they do before the radiation, the Radiation Oncology people said that I had made the right decision by having the surgery, because they couldn't have gotten the seeds where they needed to be. In order to remove the prostate, they had to make an incision in my bladder to get the prostate removed.  That caused some problems for a bit, but that has improved and I continue to improve as time goes along.

Radiation Oncology will most likely show you what the seeds look like (ones that aren't active).  They will explain side effects, dangers to people close to you, etc.    Also they will tell you about the possibility of some of the seeds working their way out of your body.  I was told that when that happens there would be no danger to family and that the seeds would come out during urination.    My Oncologists gave me all of the worst case scenarios about the entire radiation treatment proceedure.  So, if you aren't sure ask as many questiosn as you can.  Get all of your questions answered about the Radiation and the Surgery treatments. 

I just saw the reply from VGama, as I posted.   Make sure and check those articles he sent you.  He finds the best information, and has helped me think through many things.

Good Luck & Best Wishes

Peace and God Bless

Will

 

RonJT
Posts: 32
Joined: Feb 2011

Hi Hopeful,

Sorry to welcome you to the club.  You have received some excellent advice here.  I am in a similar situation and was diagnosed last month.  I interviewed 2 surgeons and 2 radiation oncologists before deciding anything.  They all basically agreed that either radiation or surgery was appropriate and had about the same outcome.  Side effects do differ greatly however.  I am headed for a 3TMRI in about 2 weeks.  UCSF recommended that I wait 6 to 8 weeks after the biopsy to get the best results from the 3TMRI.  You have time.  Read the things these folks recommend and find a doctor with skill regardless of the path you choose.   Good luck.

Hopful
Posts: 5
Joined: Apr 2016

Hello to all

Talked to a radiation oncologist. A nice Dr. Took the time to answer all my questions. Thinks I am candidate for HT combined with Rapid Arc IMRT. LDRT/HDRT will not work for me and he is not fan of SBRT. He  Wants me to undergo bone scan and endorectal mri to help develop treatment plan. I told the Dr I have a frequent urination problem that is already very bothersome to me and asked if IMRT will make it worse.  He thinks the problem may get worse  and suggested doing TURP prior to radiation. From my readings TURP is just as bad as prostatectomy in terms of side effects. I am leaning towards prostatectomy if I need  any kind of surgery to treat my coexisting BPH.              I will talk to urologic_cancer surgeon with extensive experience in robotic surgery before deciding.  Is there a  way to know how many robotic surgeries a surgeon has performed (besides asking the Dr directly ). I assume medicare and insurance companies may have this data but don't know if the general public can access it. Appreciate any input in this regard.

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Hopeful,

I would just ask the surgeon himself how many DaVinci prostatectomies he has done.  He should understand the question, and I do not think any doctor would take offense. I asked my doctor, and he seemed to understand that it was very reasonable, but as he had already done over 900, he was probably quite confident to begin with. What I have read is that "proficiency" for DaVinci Prostatectomy is unoffically regarded as around 200 or therabout.

Most doctors have a Biographical video of themselves online now, especially if they are part of a large group or hospital, so you might try checking the website of the practice he belongs to.

I have had a prostatectomy, but never a TURP proceedure. But I do not believe they are similiar in side-effects (intuitively, it seems a prostatectomy would be much harsher to undergo).  It is true that prostatectomy will eliminate the issues with urinary stricture -- a  sort of "two birds with one stone" solution.  Urinary stricture is very generally regarded as a clinical suggestion for surgery verses radiation, and it seems the radiation oncologist partially admitted as much to you.   But, on the other hand, the possibility of cancer having escaped via the nerves points back to radiation, specifically IMRT or IGRT (the two are very closely related).

IF you go the surgical route, be sure that the doctor agrees to (1) remove the seminal vesicles [wing-shaped glands that feed into the prostate gland; these are usually wrapped around the base of the bladder], and (2) remove a lot of lymph nodes for testing.  Virtually all prostatectomies today include the vesicles being removed, but some very minor cases of PCa to not suggest removal of many nodes. My own surgeon told me there was absolutely no reason to "'farm nodes," and he in fact did not.  Your biopsy shows more volumnous involvement and the perineural involvement, so your case is different.  Have the surgeon state what his approach to node removal would be. 

"My take" on your situation:  I would talk to the surgeon at length. Ask him to "sell you" surgery. That is, make a case for why he feels it would better serve your needs. Then I would take a while to ponder all of this.  And I would not rule out the IMRT, not yet at least.  

Good luck with your decision. I hope you decide to share whatever the surgeon tells you regarding all of this,

max

bob33462
Posts: 78
Joined: Feb 2016

I will be having da Vinci surgery, 4/20/16, (possibly open surgery because of prior abdominal surgery) as opposed to RT because of a voiding issue I already have. I had been advised by two urologists , one at Mayo Clinic and one at cleveland Clinic, and a radiation oncologist that RT would make my voiding issues much worse.

One of the urologists, a surgeon,  suggested TURP if I went the radiation route. For full disclosure, that same Urologist said that because of prior abdominal surgery and 258 pounds on a 6 foot frame, he did not consider me a good candidate for surgery. I decided on RP because of the voiding issue and disregarded that surgeon's advice. If I had the TURP I would have had to wait until that healed before RT began and I decided against that.

Of couse, If I did not have the voiding problem some form of RT would have been on my treatment list.

Best of wishes to you and your treatment decision.

Bobby Mac

hopeful and opt...
Posts: 2218
Joined: Apr 2009
First you are the CEO of your medical treatment, The doctors are hired help who work for you. You have the right to ask anything that you wish.,,,,,You will have to live with the results of treatment.
 
As far as surgery, there are a few "rock stars" in different parts of the US. Please let us know where you live, so we can give input.
 
You may ask the surgeon if he is fellowship trained, how many robotic surgeries in total, how many a year.
 
You may also ask what his surgical margin is.....the real experts are able to have 0.10-0.12. I spoke with one who was able to achieve 0.06 with MRI directed support.
 
For your MRI , inquire if it will be with a T3 magnet, that gives the best definition in clinical practice, not a 1.5 magnet.
 
.................
 
I don't know what the cause of your current urinary problem......is it an enlarged prostate, and if so what is the size....it will be stated on the pathology report.
 
I wrote this in a previous thread.
 
"

Three years ago I was an advocate for a man with heart disease, large prostate, problem with urinating who was diagnosed with a Gleason 3+4=7, we visited various doctors to include a surgeon and a radiation oncologist. The surgeon told us that his prostate would be adverserly affected with radiation and my friend would have problems with urinating long term. The radiation oncologist told us that the prostate after radiation would atrophy and shrink in size. Contrary statements.'

I suggest that you do research about this above statement, perhaps, see another radiation oncologist.

Because of his heart condition, instead of surgery, my friend decided to have radiation. At first there was short term swelling of the prostate, and my friend had to use a catheter. After the initial time, the prostate, in fact, did shrink in size, and he is doing fine."

I suggest that you do research about this above statement, perhaps, see another radiation oncologist.

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

 

Why is it that the RO you spoke with does not like SBRT>
 
SBRT, clinical results and cure.
 
https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

 

Hopful
Posts: 5
Joined: Apr 2016

 

Thank you hopeful and opt....

The post you referred me to is very informative and gave me hope not to give up on SBRT.  I am in bay  area and I understand there is an RO at UCSF that does SBRT on prostate. I will find out who is and see him. Any input on RO/RP at this institution is high appreciated.

My prostate size is 44 and I have lived with frequent urination problem for a long time  

MEtoAZ
Posts: 37
Joined: Feb 2016

I am a relative youngster at 53 but just completed cyberknife treatment (SBRT).  I would be "suspcious" of a doctor not being a fan of something he doesn't do.  Everyone is entitled to their opinion and doctors certainly have a ton of training BUT, as noted in many posts and my own experience.  Doctors will almost always recommend a treatment that they personally do.  That's OK, as you are the CEO here, you have to check out the options as you are able.  If Cyberknife or other SBRT is available in your area, just talk to someone there.  Like the other docs, they will push what they know so in the end, you have to make the choice, but I recommend you get as a broad a picture of those options as you can.

 

Good Luck.

Hopful
Posts: 5
Joined: Apr 2016

The RO I consulted told me SBRT can magnify the side effects of RT because it is given at high dose. I think he does not like it because the treatment is not offered at his facility. I realize it is too early for you  to talk about your side effects but you must have gotten inputs from guys who elected SBRT before making your decision. Appreciate if you can share  it. I am in the SF bay area and I understand UCSF offers the treatment. I am trying to get an appointment.

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Pardon my French, but your RO is full of crap!!!

The high dosage rate of CK (SBRT) has nothing to do w/the side effects of radiation treatment.  The side effects of radiation treatment -- like collateral or unintended tissue damage -- are caused by improper delivery of the radiation to the desired site which is a MINIMAL problem w/SBRT because it delivers radiation with the greatest accuracy.   CK can deliver radiation to sub-mm level in accuracy and can be adjusted for movement in the body and organs during delivery.  No other method of radiation treatment can do that. 

Schedule an appointment with Dr. Gottschalk at UCSF to discuss the possibility of using it for treatment in your case.  He is the head of the CK Dept at UCSF and was the RO who supervised my treatment which was entirely successful.

 

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

Often we forget that many doctors are business men first and doctors second.  love, Rakendra

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Hopeful,

I am sorry to hear about the urinary problem. Your doctor is right in that radiation can worsen the situation. We PCa patients are never in the winning side.

Cystitis, prostatitis and proctitis (colitis) are common side effects in radiation treatments of the prostate. On the other side, TURP and prostatectomy have their own risks and side effects equally not very pleasant. One must balance it according to one’s preferences. Which risks are more acceptable to us?

I have experienced both, open prostatectomy (RP) in 2000 and radiation (RT) in 2006, and have been affected by the side effects. Fortunately I have managed well with them, being ED the worse from RP and partial lose of sensation when passing stool from RT. I have no cystitis (at bladder) but had proctitis (at colon) during four months after RT intervention. Urinary frequency is a more recent side effect (2014) that could be a cause (late side effect) from radiation but it could also be due to hormonal treatment (2010 to 2012) or aging.

I believe that choosing carefully the team of physicians and facilities, is behind my success in terms of lesser side effects. I also inquire about the experiences of the surgeon, radiologist and RT machinery. The surgeon data was given to me at the hospital (professor, director of urology department, more than 400 prostatectomies executed). The hospital was a major facility with specialists executing over 24 prostatectomies monthly. I also contacted two patients operated by my doctor. When having second opinions I come across with one urologist who told me to have been a pupil of my surgeon (not good memories for him from university times). The RT equipment is as much important. It should be modern with the latest techniques (IGRT).
So far I am “alive and kicking” and enjoying life. All treatments were unsuccessful in getting rid of the cancer (pT3apN0). The bandit is still there hidden at some place but I will kick him off one day.

Regarding the urinary complications, these are not treated equally. TURP, is not the “solution” to all the problems. Frequency and urgency in fact are typical “neurologic disorders” in the bladder which could have been caused by means other than a direct compression of the detrusor muscle (at the bladder base) due to the enlarged prostate gland.
Voiding problems are more associated with the prostate itself to which TURP may be the recommendable way, depending on the cause.

BPH is usually the main culprit in urinary complications but that may be treated with simple pills (alpha-blockers) or prostatic artery embolization (PAE, a simpler and better choice with lesser risks). TURP is an “extreme” method used only at urinary nasty situations. It is utile when too many calcifications are formed in the prostate directly obstructing a normal voiding. Prostatectomy is preferred to TURP but it has more risks (ED, etc) than the latter which is done via the urethra (no major operation).
One should check the grade of his urinary problem. Is it real bad so that surgery is the best way to treat it?

TURP plus RT may be more comprehensive if the PCa patient requires a wider intervention that cannot be solved with a solo prostatectomy. For instance, the high possibility in existing Extra Capsular Extensions (a non contained case).

Best wishes and peace of mind.

VGama

Subscribe to Comments for "Just diagnosed "