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Gleason 9 Suggestions

Bob459
Posts: 3
Joined: Aug 2015

Hello Everyone,

I received my biopsy results three weeks ago and am wondering what suggestions everyone has.  The pre-biopsy PSA was 38, Free PSA 8.5%, DRE Abnormal.  The biopsy came back positive for cancer on 12 out of 12, Gleason 9 and 8's for all, most 100% involved. My urologies recommends 'throwing the kitchen sink' at the situation to being 59 years old and in good health, i.e. surgury, radiation, hormone.  However, I have read that in cases this advanced, some recommend not doing surgury so one can concentrate more on radiation.  How is one suppose to know what to do?

Any specific recommendations from readers?  I have an appointment this week with a specialist on treatment.

 I know this is not a board to dispense medical advice, but many of you know so much more about this desease than I.  Any and all comments would be greatly appreciated because I'm going through a steep learning curve and it's confusing.

Bob

BLUEpac6
Posts: 43
Joined: Jun 2012

I will try to make a long story short. I am now 68 years old.In jan. 2009 I fond out my psa was 110 and after a biopsy gleason 8 and agressive carcinoma. Had a bone scan done that was negative.and was sent first to a robotic surgeon who not even talk about surgery as he said it was probally out of prostrate and would ebe to dangerous.Then sent to oncologist who said he would have to put seeds in and then do radiation treatments and would have to have a homone shot and wait 90 days for treatment to begin which would be aug. 2009. I went to cancer treatment center of america for a second opinion because if it was out of prostrate where was it.They did mri and cat scan which was negative for showing cancer any where elsre except for a hump extruding from prostrate and said the same thing surgery wold be to dangerous and would only do radiation no seeds.In the mean time a friend who was talkig to his urologist about me as his daddy died of prostrae cancer and was worried about me.The doctor caled me not even knowing me and said the prostrate had to be remved because if I had radiation first and cncer came back there would not be acure left to do.He put me intouch with dr.seth lerner at baylor clinic in houston and after looking at all my records said he wold open me up but if the cancer was in my lymph nodes he wold have to clse me back up.I aug. 2009 Idid the surgery to remve the prostrate and my lymph was clear and he removed it Ireally experienced no pain from the operation and had no incontinence problems but lost being able to have erections.Everythig was fine till 2011 and my psa rose to .06 and was told I wold need salvage radiation which in june 2011 I began 35 radiation traetments which surprised me I never could tell I was recieveing raditon with no side effects at all.To this day aug.2015 my psa is less than.01 and doing fine I think I made the right decision in my case but as you will read every bodies case seems to be diferent just take your time to research the optins.Pray you do fine as I believe peoples prayrs helped me

Old Salt
Posts: 720
Joined: Aug 2014

But I do believe that the great majority of prostate cancer specialists would have argued against surgery, considering the numbers (PSA=110 and Gleason=8). In fact, the three specialists that you mentioned didn't want to do surgery, but Dr. Lerner did. Fortunately, his skill and caution 'saved the day' for you.

Best wishes for good health after the salvage radiation treatment.

PS: Did anybody ever explain the high PSA reading?

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

 

My score was 3+4 via a Biopsy with nothing outside of the Prostate.  I chose surgery with radiation as a backup.  It's been almost a year and and my PSA is undetectable.  Still having some problems with erections & minor dripping after urination but it's better than the alternative.  It's a slow healing process so be patient. With Prostate cancer I feel it's always good to have a back up plan, that why I chose surgery 1st.  If you do radiation 1st it changes the tissue structor which makes surgery harder but not impossible later on if needed. My surgery went very well with a one night stay in the hospital. Two weeks with a catheter in was unpleasant but I made it through.  The best day of the whole ordeal is when they pull out your catheter. You need to talk to  your radiation & surgical doctors to see what they think is the best treatment, then the rest is up to you to decide.  There are so many treatments you don't know which one to choose!  Good luck and let us know how it worked out.

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

Bob, 

I am sorry for your diagnosis, and that you have to post here, however you will receive comments based on our experiences and lay studies.

First, the side effects of various treatments can be very considerable. The side effects of different treatments in the same person are cummulative. You are only 59 now, and have a life time in front of you. In your case, where the cancer has escaped the capule , the  side effects of an additional treatment (surgery) is cummulative.  You will stll have to be treated with hormones or a combination of hormones and radiation, which will do the job.

Most medical professions do not recommend these cummulative treatments for the above reasons.

There are some , mostly surgeons, (who profit from the surgery done)  that recommend cummulative treatments...they call it debulking.

 

Here is a previous thread about Gleason 9 treatment that you can read through

 

http://csn.cancer.org/node/289172

 

PS You want to hire the best Medial Oncologist that you can find to lead your medical team

 

 

 

 

Beau2
Posts: 261
Joined: Sep 2010

Welcome, sorry you have to be here.

The numbers you have presented, indicate a very serious situation; therefore, I also would recommend hitting it with the kitchen sink. This could be your only chance for a cure and procedures after it would probably be palliative.

Should you do surgery? Tough question. I had surgery and did fine; however, as Hopeful said not all guys do. I've known guys who did exactly what your urologist recommends and did well and guys who only did radiation/hormones and did well. 

What I would suggest is that no matter what path you follow, get the very best doctor(s) you can find/afford. Curing you will be highly dependent on the skill of the surgeon or RO.  If they do not treat prostates as their main line of business, you probably want to keep looking. You probably want someone who has had a lot of practice before they treat you. Someone who has seen as many variations of this cancer as possible. In line with this I would get a second, third, fourth or however many opinions as you need to feel good about your treatment selection. Talk to radiation docs, surgeons, and oncologists if you can. A large university training hospital may have all of the specialists you need under one roof. You probably are only going to get one shot at a cure.

if you are on the east coast look at John Hopkins; maybe MD Anderson if you are in Texas; the Mayo Clinic; many of the teaching centers in California. If you are not near one of these centers of PCa excellence you may want to consider traveling to them to get another opinion. Anyhow, if you are looking for another opinion/doc come back and tell people where you live and I am sure you will get suggestion where you can go for a second opinion.

I feel your case is probably serious and you need to move forward; however, you do have time to get second opinions.

 

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Bob

I am sorry for the results. They are nasty and you should look for a treatment. I think it a waste of time and money to request a second opinion on the slices if you trust the pathologist clinic, but I would recommend you to get a second opinion(s) on the treatment(s).

Positive DRE, Gleason rate of 4 and 5, voluminous and high PSA represent an aggressive form of cancer that may have spread. You need to tackle it aggressively probably with a combination treatment, depending on any other health issue you may have. Chemo plus radiation seems to be a choice with good outcomes in similar cases. You may follow it with a hormonal protocol.
Some doctors recommend debulking the prostate as it is the big chunk of the cancer, but all treatments got risks and cause side effects which added to one another will deteriorate the well being of a patient, against fewer benefits with intent at cure.
It would be helpful to find the extent of the cancer with a PET exam to rule out bone metastases. You have the time to get added information on your status while discussing about treatments. DEXA scan is highly recommended to verify bone health because PCa medications tend to deteriorate the bone. You may have start taking a bisphosphonate.
When consulting around, include a visit to a medical oncologist specialist in prostate cancer issues. I also recommend you to read books for getting details on treatments and their risks. Your wife should also know the facts. You may lose the ability of fathering a child (again) or even the enjoyment of sex.

Best wishes and luck in your journey ahead.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

Bob,

I agree with all that Vacso said in his Aug 24 post. As I stated at your other short thread, another biopsy is probably senseless: your first proves you have an aggressive cancer filling the gland. As Vasco noted, what I would do is try to learn where, and how much, spread there is outside the gland (it seems very likely there is spread, but this has not been confirmed yet).

Also as everyone has commented, you need to have a medical oncologist leading your treatment.  The average surgical urologist is out of his element with all of this; I do not question that a few with the level of widespread  competence that you need exists, but such a urologist would be a rarity.  I would never at this point accept any surgical proposal that suggested "let's get the gland out and see what we have in there."  I am not saying that I absolutley would rule out surgery.  Instead, sugery, if you have it, must be fitted beforehand into a larger, holistic treatment plan.  You certainly need to be getting imput from more than one type of specialist.

If by some miracle the various scans indicate there is no spreading outside the gland I might consider starting with just surgery, but results showing widespread escape are more an argument against cutting.

Your treatments, unlike less severe cases of PCa, must focus more directly on survival, with side-effects a secondary worry. Your relatively young age should help you get through this challange,

max

 

Bob459
Posts: 3
Joined: Aug 2015

Med,

 

Thank you for your thoughtful and sincere advice.  Just taking the time to reply means a lot.  There is so much information out there, it is difficult to decifer. 

You have helped a lot and I also wish you the best.

Bob

Will Doran
Posts: 207
Joined: Sep 2015

I was diagnosed with Prostate Cancer in August of 2013.  It was found by accident.  I had no symptoms.  I had an internal bleed and through all the testing for that they found that I had a PSA of 89.  When we realized that the bleed was not an adrenal gland problem, as it was first thought, we moved on to the Prostate Cancer. I  had a radical Prostatectomy in Decemebr of 2014.  My PSA went down to <1 with in a couple of weeks.  I was put on ADT (Lupron--nasty stuff) and then had 8 weeks of radiation.  My Prostate was 40% involved with a gleason of 7, and one lymph node was involved with a spot that was so small that it didn't show up on my MRI's. My bone scans have been clear, and there was no spread of the cancer into surrounding tissue.. However, I was diagnosed as a Stage 4, because of the lymph node involvement, and treated as a Stage 4, advanced. My doctors said they were going to be very aggresive. I was told that the Cancer was very agressive.  We did Genetic testing which comfirmed that diagnosis.  I have one more Lupron Shot to go next month (Oct. 2015).  My PSA has been and is still holding at <0.010 at this time.  We are going to try to go off the Lupron with the hopes that the PSA remanis at <0.010.  My testosterone was at 17 when last checked.  I have to do blood work next week before my next Lupron shot.  It has been over 2 years since I was diagnosed.  I am very thankful that I did have the robotic surgery.  I was home the next day after a 5 1/2 hour surgery.  There were complications during the surgery from a previous double hernia surgery and the mesh that was used, plus they found a birth defect, where the prostate was adhered to my bladder. So, what was normal for me was a symptom of the cancer for others.  I had been this way all my life.  My Doctor had me back on my teadmill in two days and I was allowed to go back on my trainer bike three weeks ahead of schedule at 5 weeks.  I had some leakage problems.  My doctor/surgeon had to make and incision in my bladder to remove the prostate, and thus there were muscle problems from that.  I was sent to Physical Therapy for that.  I still have an occasional leak, depending on the level of exercise or physical exertion.  But it's much better and I can live with that.  I continue to exercise at a high level.  90 - 120 minutes of trainer bike and/or treadmill per day with weights and resistance training.  I am currently in Physical Therapy twice a week to regain strength in my legs that was lost through the Lupron treatments.  I'm making head way there. I am very thankful for all the work my doctors have done and I would do it all again to beat this disease.  It's a long hard fight, but I refuse to give in.  And, so far my doctors and I are winning.  My doctors say they are puzzled by my progress.  They can't understand how I'm getting along like I am.  Many of the side effects from the Lupron aren't hitting me as hard as they do most men.  They think most of it is because of the level at which I exercise.  Instead of dropping muscle mass, I'm actually gaining muscle mass.  Shoulders and arms are getting larger.  I have not gained a huge amount of weight as is usually the case while on Lupron. What I have gained is all muscle.

What has now occured is that my Melanoma has fired up. I had a melanoma removed 10 years back and we thought all was well.  I was advised to change dermatologists.    I've had 12 Melanoma surgeries in the last year.  It is being studied and testing is being done.  Thoughts are that Prostate Cancer Patients become more at risk for Melanoma.  I have two doctors working with me now and will have the third doctor see me in November.  He is into Genetic / DNA testing and will be looking into that part of my situaion.  They are finding that Melanoma can be  fueled by testosterone as well.  So I understand from studies in the Journal of Oncology.  My dermatologist (a former student of mine) has ask that I see the other two doctors to have two more "sets of eyes" looking at me.  She is afraid she is going to miss something.  So, Now I'm in the battle with melanoma and have been having two or three biopsies and follow up surgeries every three nmonths.  So far they have been caught very early and are very early Stage 1.  I end up with 2 - 3 inch incisions for every one of these melanomas.  The pathology has always come back that they were caught early and there is no spread to surrounding tissue. 

All my work had been done through Mount Nittany Medical Center in State College, PA and Penn State Hershey in State College and Hershey, PA, and the Cancer Care Partnership at the Mount Nittany Medical Center.  I am very thankful for all the work they have done to help me

Don't give up.  Fight hard and research as much as you can to learn what your options are. 

Peace and God Bless

RonDeF's picture
RonDeF
Posts: 15
Joined: Sep 2015

I had a Gleason scroe of 7 and and decided on suregry, tests (CT Scan, MRI & Bone Scan) and my Urologist determined that the prostate capsule had been breached.  He tried to talk me out of surgery but I opeted to have it anyways with the understandingthat I would also need radiation therapy within 4 months of the suregery.  My post-op patholgy report came back as a Gleason score 9 with Lymphnode involvement (localized metatstasis).  I am now on Lupron and will be starting Radiation therapy (39 treatments) within the next 10 days.  I have no regrets on my decision as I wanted as much of the cancer removed from my body as possible first.  I know some people will tell me I was wrong but every decision is personal and you are the only one that can make that decision.  I am just about over the incontinence issue, one or 2 drops every few weeks when performing stressful physical activity and it appears to be getting less and less as time passes due to exrcise.  I am not a fan of the Lupron side effects but I just suck it up and push through them each day.  I am living a quality life again and hope to completely beat the cancer.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

Ron,

I think your battle plan has been a good one. Having the surgery let you know that the cancer was a lot worse than the biopsy suggested, which was important information to have.  I have always believed personally that side-effects are better than cancer, but respect those who think differently.

I hope the radiation is wholly curative, and leaves you cancer free. I hope you update as things go along,

 

max

 

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