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New Diagnosis

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Hello all,

Prostate cancer, not words I wanted to hear assoiciated with my name at 57 years old but after reading many of the postings here I realize I am not alone. 

I was diagnosed with Prostate cancer about 3 weeks ago. I had a biopsy done after a very slightly elevated PSA. My PSA has fluctuated from 1.3 to 2.8 since I was fifty. My PSA in January of 2017 was 2.8. I did not have a PSA done in 2018 and my PSA in January of this year was 3.6 along with some starting and stopping of urine flow which made me pay a visit to my Urologist. He said we could either wait 6 months and do another PSA or do a biopsy, it was my choice. He did a DRE and said the prostate felt normal. 

I have had problems with my prostate for almost 20 years now. I was diagnosed with acute prostititis many times. I have been diagnosed with a Pelvic Floor Disorder (I am not sure of the actual name). I+ have had pain in my testicles off and on for 20 years. I have had 3 cystoscopies, an MRI of my pelvic area, an ultrasound of my testicles. I went through 2 years of PT for my Pelvic Floor Disorder. I was on Flomax from 2008 to 2012. I could go on and on. 

Here is what the Urologist told me when I was diagnosed.

Gleason Score 3+3=6

12 core samples taken, 2 of the 12 were positive for Prostate cancer. The first being the left, inside base, less than 0.1CM, less than 5% of the total tissue. The second being the inside, middle left, 0.3CM, 15% of the total tissue. Both areas had no High Grade Pin nor any Perineural Invasion. 

The biopsy was preformed at Kaiser Woodland Hills by Dr. Adam Singer

Since my diagnoses I have done a lot of research, including reading many of the posts from this site. I have met with one surgeon at Kaiser, Woodland Hills and I have another scheduled for May 7th as well as a second opinion scheduled scheduled in a couple of days at The City Of Hope. 

After all my research and the recent surgical consult I have had I want to do the Nerve Sparing Robotic Assited Protatectomy. It seems with the cancer being localized inside my prostate I stand a better chance of my nerves being left intact.

Would love to get everybody's opinion. I am stressing right now. It seems all I can think about is that I have cancer in my body and I want it out!!! It freaks me out!!!!

 

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Sydney,

Welcome to the club that nobody wants to belong to.

Sounds like your doing the right things.  Two major treatment paths are surgery or some form of radiation.  By doing an MRI or other radioacitve type scans you can determine if your cancer is contained inside the Prostate.  I had Robotic surgery almost five years ago and would do it again. Others have done things like radioactive seed implants or Cyberknife also with good success.  Look at all the side effects of various  treatments and decide.  After almost 5 yrs. Of undetectable psa readings I am glad(so far) that my cancer has not returned.  Get the best doctors & facilities to give you the best outcome. At 3+3 you have time to study and pic the best treatment plan for you.

Dave 3+4

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Thanks so much Dave 3+4. I appreciate the support! My Urologist has not recommended any scans as of yet but it seems from information I am gathering that some sort of scan should be something I do to make sure it is not outside the prostate. I know from things I have read here and elsewhere that anything under 7mm will not be detectable in a scan but I think for peace of mind it is something to consider.

Thank you!

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Sydney,

Cleveland above gave you a good advice. You should take your time investigating further into the problematic issues involving the treatments for prostate cancer (PCa). We all gone through the same feelings and freak out initially.

Two positive cores out of twelve with Gleason score 6, low PSA of 3.6 ng/ml, negative image studies and negative DRE are good parameters when one is diagnosed with PCa. These cases are in fact recommended to AS (active surveillance) which postpones any intervention with a radical treatment, without risking a progressive status latter. In your shoes I would consider AS before embarking on surgery. I would investigate further on the details of this regimen and verify any possibility in follow it.

Radical treatments (surgery and radiotherapy) are the ones that can provide cure but these are linked to nasty side effects that can become permanent nightmares for the many years we live. Some guys experience lesser problematic issues but many others don't. The quality of life of the patient is always in jeopardy (young guys suffer the most for the long life expectancy) and no doctor wouldn't take any responsibility or blame for a worse outcome. We are the ones to choose so that we need to be comfortable with an option. We must check in advance about the risks involved, get the best diagnosis possible, consult our family and make a decision.

I am curious about the Pelvic floor physical therapy you have been involved since your 50 years old. I believe that you have tried to control urination problems and probably took some drugs, including pain killers for the testicle issues. Have you checked for testicle cancer? What was the reason behind the pain? PCa is not linked to pain or other symptoms. We may notice something when it is very advanced affecting other organs. In such a case it would be seen on an image study.
On the other hand, those physical actions done for the pelvic issues could well cause a surge in the last PSA increasing it from 2.8 to 3.6.

I recommend you to get second opinions from various specialists. Urologists will always recommend surgery. It is their trade and they know little about radiotherapy. AS is not easy for those that "freak out" or those that "want it out". It needs nerves to sleep with the enemy on the same bed every day but it can be ( and has been) the best option for those with low risk cases.

Best wishes and luck in your journey.

VGama

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Thank you for the information VGama. The testicular pain has been off and on for almost 20 years now. I had an ultrasound done on my testicles years ago and it showed nothing. I was a bit of a drug addict in my teens so I would not take anything for the testicle or pelvic floor pain. They tried a localized pain killer that was injected with a long needle, deep down by the area through my right butt cheek but that only lasted about 2 weeks and I wasn't going to go through that injection pain every two weeks and they said they would only do it every 6 to 8 weeks anyways. I also tried electro stimulation. I wore this pack on my lower back with little electrodes attached to me that pulsed throughout the day. That didn't work either.

The last scan I had was in 2013. it was an MRI of my pelvic area and the only thing that showed up was a small kidney stone that they said would probably pass on it's own. I have not had any scan as of late but I think I may be vocal about getting one now. 

I go tomorrow to the City Of Hope for a second opinion. I am seeing Dr. Clayton Lau who I hear is a top Urologist and Surgeon at The City Of Hope, so I feel very fortunate am able to see him. There is a very extensive questionaire that I had to fill out and have had 2 phone interviews before my visit so I feel I am in good hands.

I have done the research and I have read all the horror stories that men my age face after surgery. I can have a long life ahead of me filled with urination problems and erection problems but I feel it's a small price to pay for getting that enemy out of my body!! I don't do good with waiting for anything, especially when it comes to my health. I know me. I will be freaking out if I don't get this thing out of me. I know it could come back but at least I know the initial infected area is gone!! 

Thank you VGama!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Sydney,

My brother is named "Sydney" also, and has a foot-long mountain of beard.

Your minimal biopsy finding indicate that no form of scanning will ever spot PCa cells outside the gland, even if they exist there. Scans for PCa are just not that sensitive.

For curative treatments, either surgery or some form of RT should, very likely, cure you forever. While there are "horror" stories regarding surgery, most guys in recent years do not report such; most have successful outcomes, with minimal incontenince, and E.D. for a year or less.  Any medical proceedure has "horror stories"  they are what make the news, and what people like to speak about. An uneventful, successful proceedure does not engender conversation.

My path was similiar to yours:  Prostatitis for over 30 years, with several years of Flowmax at the end.  Stage II disease, but after surgery, my urinary control has been BETTER than before surgery, by a huge margin.

City of Hope is one of the best cancer facilities in the world; there advice should be excellent and very trustworthy.

Share what you decide,

max

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Thank you very much Max. That is very reasuring. I am hoping that City If Hope will concur with the findings of Kaiser Permanente. This will help with my decision. I have heard that any type of scan may not show anything but it will at least give me peace of mind that there is nothing else going on down in that area.

I will give an update after I visit City Of Hope tomorrow.

Tech70
Posts: 54
Joined: Nov 2017

My diagnostic paraments very closely resemble yours.  I have been on AS for nearly 2 years.  One suggestion I would make is to have some form of genomic testing done on the biopsy samples.  I had this done and the results indicated I have a very low risk form of the disease.  My testing was Oncotype DX.  Genomic testing results can be very helpful in deciding on treatment.

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Thank you for the advice Tech70. I had not heard of that before. But I also know me. There is no way I could live every day knowing I have cancer in my prostate no matter how slow growing or small. Unfortunately the what if’s would always be at the forefront of my thoughts. It’s cancer and I want to get rid of it!

 

greenteaguy
Posts: 36
Joined: Feb 2019

Hello Sydney

I am in much the same position as you other than my age which is 66.  Of 12 biopsy samples I had six positive on the right side only with  five 3+3 and one 3+4.  Some oncologists argue that a low grade Gleason 3+3 cancer is not really cancer at all.   I can live with that, so my urologist and I chose A/S last July, and I have made very postiive lifestyle (diet and exercise) changes.  If I have the need for treatment, removal will be my last choice and HIFU will be my first choice.

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Greenteaguy, thank you very much for your input. I wish I could be like you and choose A/S but I know me. I have lived with me my whole life and I cannot bullshit me. I know I will be constantly wondering what the cancer is doing while I am waiting. 

I had my second opinion/consultation with Dr. Clayton Lau at The City of Hope yesterday. This was a big deal for me. I wanted to see if their pathology department concurred with the pathology report I recieved from Kaiser upon diagnosis and it did, Gleason score of 6. I did not receive a copy of the report so I do not know if the cancerous tissue percent was the same as my original diagnoses but when I asked him about the pathology report he looked at his computer and said, yes, Gleason score of 6. He didn't mention anything esle so I don't know all the details but I will take the major detail which is Gleason score of 6.

He was very forthcoming, never rushed me and was very open. He did say that the normal recommendation for my diagnoses would be A/S. I told him my Urologist suggested the same thing and then I explained my 20 year history of problems with my prostate and that area in general and my paranoia and need to get the cancer out of me. He was very understanding and told me that I am young, I stand a much better chance of a full recovery as far as incontinence is concerned. He did say that ED is a little different situation and it may take longer for erection on my own to come back and it is possible that I would need the little blue pill help for the rest of my life but I am willing to take that chance. 

I have one more consultation with a surgeon at Kaiser, in May. The great thing is that Dr. Lau knows the surgeon I will be seeing at Kaiser. They are actually friends and he said he is a great surgeon and a very nice guy. I trust Dr. Lau and his experience and knowlege so if he gives this guy the thumbs up, I'm good with that. 

So it looks like the next step for me is to meet with Dr. Lam in May at Kaiser and if the consult goes well I will schedule surgery with him and have my prostate removed and deal with whatever comes after that. I am starting know though and being proactive with my health. I am going to cut down on my alcohol consumption, change my diet a bit and get more exercise. Not that was out of control before but I have been known to tear it up on the weekends. I do not drink at all during the week but then at times i tend to have 12 cocktails on the weekend. I also eat very healthy during the week and then crush anything I want on the weekend, pizza, fast food, ice cream, you name it, I eat it. So now I have started Balance of Nature suppliments. It's bacsically fruits and vegetables. I am going to try and exercise 4 days a week as opposed to the 2 days a week now. I am going to cut down on my weekend fast food and sugar intake as well as limit my alcohol consumption. I figure doctors and surgeons can only do so much. The rest is up to us. 

I would like to thank all those on this disscusion board. It is a great resource for those of us who are unsure or need to just talk about what's going on. Every mans PC is different and this disscusion board lets us all know we are not alone. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Syd,

There is a percentage of men who, when diagnosed with PCa, just want it 'gone,' and who could never rest until it IS gone.  I am one such man, and you mention feeling similiar. Actually, this is not an uncommon reaction.

A/S is a reasonable and usually effective protocol; I do not call it a 'treatment,' since it is not technically a 'treatment,' but a careful monitoring.   But we all make our own choices. Bless yours, whatever it is.  And whatever you do, do not second-guess it later, since doing so accomplishes nothing good.   Whining later just adds guilt to discomfort.  But you in no way seem like a guy who would do that; I just mention them because they are not uncommon here.

lighterwood67's picture
lighterwood67
Posts: 221
Joined: Feb 2018

Well, its your body, its your call.  I would do what the doctors recommend.  Looks like most are going with A/S.  I am 68, Gleason 4+3=7; RARP (Robotic Assisted Radical Prostatecomy) 3/2018.  I am fully continent;  75% recovered from ED issues without add-ons (pills).  You have time to listen and choose.  Good luck on your journey.

graycloud
Posts: 39
Joined: Jan 2018

My husband was initially diagnosed with a 4 + 3 score from a local level Nov. 2017.  He went to Memorial Sloan Kettering NYC and Mayo for 2nd/3rd opinions.  They put his biopsy through their own labs.  His score came back 4 +5.  We then sent off for another opinion to John Epstein at Johns Hopkins(top prostate path dr in US).  Again, gleason score 9.   If my husband's scores were 3 +3, he would probably opt for Active Surveillance.   There are some Active Surveillance Trials going on - maybe Mayo or MSK?  But, with your history, seems that something is going on.  My husband was 55 at time of diagnois.  No signs whatsoever other than elevated PSA, and low volume areas on MRI.    He had robotic surgery at MSK Jan 2018.  Gleason downgraded to 4 +3. He is fully recovered from ED issues with no pills.  95% continent. Excellent quality of life at this point.  Post surgery is a "process" but one that can be positive with hard work.     With Memorial Sloan Kettering, my husband had his surgeon/oncologist, and access to bladder specialist and ED specialist.  With your multitude of issues, I would highly recommend going to a group/specialists that can provide specialists to work with you on prostate/urology and other areas.  You will need to get a baseline of bladder issues/ED issues/ pre-surgery including pelvic floor therapy and exercise to prepare your entire body for surgery.  My  husband's surgeon waited 4 months to give him time to get in good physical shape to prepare for surgery/recovery, and to let the nerve bundle within the prostate time to heal after the biopsy -  to obtain the best results post surgery.  You have time to get a battle plan together.  Don't rush in to anything without doing your research on the success rates of your surgeon/doctors, and their protocols post surgery (physical limitations, physical therapy, ED therapy).   The sooner you are active, moving and working on rehab, the better your chances are for excellent recovery.   Good luck!  Sunshine

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Thank you to everybody who has weighed in. I am doing surgery with a Dr. Lam at the Woodland Hills Kaiser facility. He was recommended by Dr. Clayton Lau at The City Of Hope so I feel pretty good about the surgeon who perform my RP. I met with Dr. Lam and he seemed very knowledgeable and he layed out all of my options. He did not push me in any direction although when I went in I told him I was leaning towards surgery. I have since spoke to several people who have had a RP and they seem to be doing very well with very little long term side effects. 

My surgery is scheduled for September 5th of this year. I wish it was sooner but I figure not a lot will change in 3 months. I have some pre-op stuff to do in July. I am not sure what that intails, maybe somebody can give me some insight as to what they do or what they expect me to do to prepare for surgery. 

I have also tried to cut down on my red meat intake. I have it 2 to 3 times a month now. I have introduced fish in to my diet once a week and I am trying to cut down on my processed sugar intake. I ate fairly healthy during the week but I would binge on the weekends. I am not trying to do everything in moderation. I am trying to eat fairly healthy all the time. I don't think you need to deprive yourself of the food you like but making some simple changes can't hurt. I am also cutting down on my alcohol intake. I love whiskey, bourbon, scotch and tequila. Again, I do not drink during the week but I do have a tendency to hit it hard at times on the weekend. So now it is moderation throughout. I will have one double instead of 3 or 4. 

Thank you again to everybody and to this forum. It is a great place to post and gather information and experiences. 

Sydneymills

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Syd,

There is often great relief just in making a final decision on treatment, whatever it is.  I know nothing about Kaiser, although many guys here have mentioned it favorably over the years. City of Hope is among the best of the best, which I know from my lymphoma friends and the research they have led the way on regarding blood cancers.

One "prep" item will probably consist of having a nurse train you on how to properly do kegel 'pelvic floor' exercises, which can dramatically assist in continence recovery afterward.  Your liver will appreciate the reduction in alcohol, even if your prostate doesn't care.

Best of luck to you,

max

greenteaguy
Posts: 36
Joined: Feb 2019

Please keep us informed Sydney and may the best possible outcome happen.

lighterwood67's picture
lighterwood67
Posts: 221
Joined: Feb 2018

Good luck on your journey.  A lot of folks struggle with their type of treatment for one reason or another.  However, in most cases with cancer, no decision is a decision in itself.  I too talked to folks, that I knew growing up or from church in my hometown, about surgery or radiation.  The surgery folks told me they would do it again if they could go back.  Two of the radiation folks, told me they wished they would have had a RP.  One of the radiation/hormone folks has since passed away.  Anyway, it is always your decision, every case is unique.  No matter the results, you will have to live with it.  Do the best you can with the cards you are dealt.  Stay focused on quality of life.  Good luck.

sydneymills's picture
sydneymills
Posts: 8
Joined: Apr 2019

Lighterwood67 & All, 

Thank you very much for all of your input. I very much appreciate it. I finally have a solid date for my surgery, September 5th. It is coming up quickly but I am looking forward to getting this part of the journey out of the way. I know the recovery will take some time but I am looking forward to getting this out of my body so to speak. 

Thank you to all and I will keep you posted once the surgery is complete.

Sydneymills

Josephg
Posts: 168
Joined: Jan 2013

I wish you the best of outcomes, Sidney.

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