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Surprise! Surprise! Surprise!

James_In_Atlanta
Posts: 2
Joined: Dec 2009

Surprise! Surprise! Surprise!

Never been sick a day in my life except for the common cold. My Dr. monitors my cholesterol, blood pressure and because I said that my maternal grandfather had prostrate cancer treatment at 81 he decided to have a PSA test done. Good thing; probably would have been inoperable at 50!

The day before Thanksgiving I received the pathology of the prostrate biopsy! Diagnosis, Prostrate Cancer! Feel like I have been kicked in the gut, but and head all at the same time!

My prostrate is a normal size and I have no urinary symptoms associated with BPH. My ER is attributed to an auto accident in 93 due to internal disk rupture of L2 & L3 and or high cholesterol and borderline high BP.

What is a man of 48 to do? The doctor said that the cancer could have been detected three or four years ago but normally prostrate cancer screening does not take place until one is 50 years old? I was 47 at the time of the biopsy and the results of the PSA 8.0 and the TNM, T1c made my 48th birthday a real great day. The Gleason Scores of specimen D: 3+4=7, G: 3+3=6 and H: 3+3=6 with high grade PIN in G made it sound like there was little hope of a false positive.

My wife and I have no children and are afraid that this will impact us on many levels. 1st I am worried that the health insurance company will find some way to drop us or price us out coverage “purging”. 2nd quality of life after treatment, intimacy, being able to continue earning wages as usual, self employed plumber, and 3rd what is the best treatment option?

I have been on the internet all most every waking moment trying to find the best option. I have ruled out watchful waiting, wanting to get this behind me ASAP and freezing or cooking the prostrate since there are not enough significant positive results for some one in my position. Protons may be a way to go but that seems like that is better for older men?

Presently I am torn between radioactive seeds followed by targeted radiation therapy and robotic prostrate removal. I have been to see the seed doctor and not looking forward to seeing the surgeon having read about both and having watched a prostrate removal on the internet including nerve sparing.

I have read many of the blogs on the site and am still looking for objective answers. Seems like every clinic and doctor out there has the best answer and wants to do the procedure ASAP.

My wife and I want to put this behind us ASAP!

Your thoughts and suggestions are welcome!

James In Atlanta

txbarton's picture
txbarton
Posts: 82
Joined: Aug 2009

James,

Most of us on this board received the same unwelcomed kicks.

Sometimes the person's condition eliminates some of the options, often all the options are open and up to a personal choice.

Seed implant provides the most rapid return to a routine lifestyle.

External radiation takes the most time.

Of the surgeries robotic provides the most rapid return to a routine lifestyle.

Either radiation option normally removes the option of follow-up surgery.

Very personal choices, there representives of all of them on the board.

I opted for robotic surgery which was done 7 Oct this year. My biopsy showed Gleason 6 (3+3), my urologist said I had lots of time to make a choice. The post-op pathology showed Gleason 7 (4+3), T3b and cancer outside the capsule; the surgeon said it was good I didn't wait longer than the 8 weeks after the biopsy.

My 8-week PSA check was this week; no detectable PSA.

Good luck on your journey. You will find lots of experience, advice, opinions and, most importantly, support here.

VB

Kentr
Posts: 111
Joined: May 2009

On behalf of all who post here, we wish you didn't have the need to ask what our opinions are. That said, welcome.

Each of us struggle with what treatment path we should follow. It's not an easy choice.

I am now 68 years old and had brachytherapy (no follow up radiation) two years ago (January 2008) after much thought and research. The doctor only took ten samples during the biopsy because my prostate was much smaller than normal (a larger prostate would have called for more samples). Gleason scores were identical to yours, 3+3, 3+3 and 3+4. My PSA, as I recall, was 3.8.

Like you, I had no symptoms whatsoever so it makes the decision even more difficult as in, if it ain't broke, don't fix it. Passing on watchful waiting is a good decision. When I discussed it with my doctor he said, "What are you waiting for? The point where we can't do anything to help you?"

Side effects? Yep. Sometimes there is a great, and somewhat unexpected, urgency to urinate and on a few occasions the need to have a bowel movement but it passes with time. ED is another issue but in my case a good portion of that problem may be tied to my age.

Think through things and take comfort in knowing that whatever treatment decision you arrive at will be the one that is best for you.

Keep us posted - we are here for you!

Kent

finbar
Posts: 26
Joined: Aug 2009

There are a number of factors that enter when on has to decide on a treatment. Not knowing creates anxiety. One has to locate a medical center with doctors that have the medical expertise (experience) and the specialized equipment. Even monitoring your situation requires
this experience. Several urologic surgeons have performed thousands of operations and these are the ones I personally sought.Another factor to consider is the Gleason grade; the higher
grades are more aggresive is the cancer. Third, as a relatively young man, you can expect to live many many years. You don't mention your libido so don't know how important it is to you to save as many of those nerves that are essential here. Theere is such a process as 'nerve sparing' techniques that may add to your quality of life.
Sloan Kettering has an interesting site that helps you and your primary doctor determine which treatment would be best. See www.nomograms.org AT left column click on 'prostate cancer' Scroll to "What information I will need".
Freezing, known as cryosurgery,has, I understand, has outcomes not fully known. I've read that the long term effectiveness of Proton therapy is not fullY known.Lastly, for many of us getting the cancer out of our bodies asap is number one and so I opted for robotic prosectomy
and glad I did.

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

James, like you I am only 47. I have two kids. All things pretty normal until October when a slightly elevate PSA led to a biopsy which led to the diagnosis of Prostate Cancer. Kicked in the gut is a good phrase. I feel fortunate that we found it now rather than 3 or 4 years down the road. My doctor recommended surgery and I decided at his suggestion to seek at a second opinion. I went to Memorial Sloan Kettering and they laid out all the options available, side effects, etc. I also work with 2 people diagnosed around our age who have had the robotic surgery (one recently, one over 5 years ago) and are both doing very well. For me, the decsion was robotic surgery and I am scheduled for my procedure in mid January. Having said that, I am in total agreement with the post above, the ultimate decision is a very personal choice. You need to weigh all the options, discuss it with your wife and ultimately decide what you think is best. You need to be comfortable with your decision. This board has been a great source of information and inspiration for me. There are a lot of really super people here to lean on, and ask questions. I wish you all the best.
Joe

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Hey James.. I am 56 and not diagnosed but scheduled for a biopsy next week with the same Dr. Joe has! As you said, the whole concept of cancer sucks. You are at the right place as it seems we are all in the same boat and trying to bounce experiences and ideas off of each other and lend support when we can.. For me, I have an elevated PSA of 5.2 and a normal DRE so maybe I will be OK....or maybe not.. The bad news is I lost my Dad in his early 70s to PC so I have to be concerned over my own situation. I also MAY have a Lyme disease angle with this.. Anyways, keep us posted and keep the faith.

NM
Posts: 214
Joined: Jul 2009

Hi James and I too was kicked in the gut this year. Im 52 and had Davinci in Sept. I am going to give you only 1 mans opinion. Davinci or open surgery is the best option.

Why? You can have radiation if the cancer returns after surgery. With radiation its a all cards in type of play. In my opinion you are much too young for that.

Hope this helps. Sorry so blunt but this is cancer..

Prayers ...Nick

PS a second opinion is a necessity I choose John Hopkins in Baltimore. Just ask your oncologist to send the slides to them you dont need another biopsy

paquitin
Posts: 7
Joined: Mar 2009

James;
Sorry about the diagnosis. Lucky that it was found at early stage.I was also diagnosed at early age.It is always difficult too make a decision between surgery or radiation.For a young guy like you surgery would make most sense.No further worries that the cancer may come back.
The important issue is not how the procedure is done but the experience of the surgeon doing the specific procedure,either open or robotic prostatectomy. If you read the data regarding isssues suchh as incontinence and erectile dysfunction there is really not much difference between the twoo procedures. i had an open prostatectomy done at Memorial hospital in NYC.
I was out of the hospital the day after surgery, have no major problems with incontinence or ED. I do use Viagra or cialis, but at age 57 who wouldnt.
I had the same gleason scores as you.The best is that I am cured and so will you.You will be able to deal with whatever comes afterward.
Life is good.
Good luck.

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

Hey James

Sorry to hear about your diagnois, but we've all had the same discussion with our docs.

I'm 66, PSA of 4.01 and Gleason of 3+3 (6). Diagnoised in Oct of this year. I looked into the Prosticision (Radio Therapy Clinics of Georgia) and spoke with Dr. Critz twice on my situation. Also discussed with several docs including my primary care.

Based on all I've heard and read, the younger you are, the more the case for prostate removal. Also, I've said this on other responses, I always like to have a back door or a "back-up" plan. Once you have seeds/radiation, then surgery is no longer an option. However, if you have surgery and there are lingering cancer cells, then you can follow-up with radiation.

Each of us has to make our own decision base on our own situation. I had my surgery done robotically on Dec 3rd by Dr. Scott Miller at Northside Hospital in Atlanta. He's done over 1,200 procedures utilizing the Di Vinci robot and is highly experienced. I felt that was the best choice for me. Had I been older, I would have gone with the seeds/radiation (ProsTicision).

Whatever decision you make, best of luck.

Let me know if you want to talk.

Larry in Fayetteville, GA

Ralphie62
Posts: 47
Joined: Feb 2010

Larry, were you pleased with doctor miller, adn how did you come to choose him??? i have heard he is very experienced, but can't find many contacts who have used him fo this.....ralph

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

I had posted a reply to one of your post earlier on Dr. Miller and yes, I was (Am) very pleased with him.

Excellent surgeon.

Larry

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I went through the same process as you. Here's my profile

biopsy results came back on 10-27-09.

Stats:

52 years old
8-15-09 PSA 7.25 - got as a lark while at the Indiana State Fair
10-2-09 PSA 6.125 - from Family Dr. vist also had DRE he didn't feel anything unusal
10-14-09 DRE - Urologist felt Nodgle
10-20-09 Biopsy
10-27-09 Biopsy report
17 gram prostate
3 of 8 samples cancerous 50%, 20%, 20% all on right side where nodgle was none on left
Gleason 3+3=6 T2a
10-29-09 Consultation with Dr.

Thinking best treatment is removal of what he believes is organ contained cancer.

I got 2nd and 3rd opinions from other surgeons and an Oncologist. All agreed at my age...they would remove but I have a palpable nodgle. I just completed an Endorectal MRI with coil. Hoping more insight will be gained as to the extent and degree of cancer - particularly if the nodgle has broken out of the organ capsle. I am scheduled on 12/29/09 with a surgeon team that has completed over 1300 di vinci's and expects to cure me.

I will deal with whatever aftermath is caused by the surgery but I just want that cancer out of me. I have way to much life to life and dreams/plans to complete before leaving this place. I wish you well in your path and outcome!

Randy in Indy.

Ocean-View
Posts: 26
Joined: Jul 2009

Hey James,

Christmas will be three months since I had da Vinci. I'm 62 outside (30's in my head) The day of surgery will make you have erectile dysfunction, incontinent and sterile. The first two will go away with time. You will never be exactly the same as you were the day before you have the surgery, but you won't die from prostate cancer either.

You will able to resume everything after you heal. Incontinent will go away first then the ED. It takes time for the nerves that control erections to heal.

You can live just fine without a prostate, and you will still have a good and enjoyable life. Good luck, and remember that what ever form of treatment you choose, you can't make the wrong choice.

Tom D Orlando

Trew
Posts: 892
Joined: Jan 2010

For me, living without a prostaste has not been so good.

at time of surgery in March 09 I was a 5+4 and had positive margins. I lost important nerves on one side, but have leakage issues since. Almost dry and then slipped back with radiation. Hormone shots are miserable, at least for me. I haven't had a good night's sleep since surgery. There are lots of positive stories out there, but there are some hard stories, too.

Florida Hospital in Orlando has a good proton department- take a look at it. don't think just because you have had surgery cancer will not come back. One of the men I was going through treatment with at Loma Linda in CA had his prostate out 6 years ago in his early 50s. Nice clean surgery, all important nerves left intack, good sex afterwards. But 6 years later the cancer was back in his now empty prostate bed. He was treating it with proton therapy. You can go on the Loma Linda site and read the testimonials, and request the book and DVD. One newsletter sent out in December was the story of a man treated with protons two years ago and he had just fathered twins- try that after surgery! the article said.

Surgery is the ideal solution for any surgeon. Seems like to me, seeds is the worst solution, but that is my opinion. With a gleson of 7 or less- I would have jumped on the proton solution gladly.

marc1957
Posts: 79
Joined: Oct 2009

Hi james

Sorry to hear of your situation. I also caught mine with a fluke as I was seeing the doc for something very simple, she mentioned, we missed your psa check last time, lets get it while you are here. OK, later in the week, its 4.1, it was 3.1 last time, tilt, head to the urologist guy. OK. I tell him, I dont trust one data point, OK, do 2nd, its 4.0, OK,
time to violate me....... I sweated bullets that the needle would bring me to a near death experience.... nope, it was terribly simple & painless. The results were decent, but not perfect. 9 out of 10 samples were clean, one had 10% cancer in it on the rt side. SH|T (not OK). Gleasons (3+3) = 6, no knobbies anywhere.

To give you alittle back ground, I had lung cancer/surgery 11 years ago while my wife was pregnant, almost died from over sstimulation of the vegas nerve, ended up in ICU with a BP of 000/000 - you get quick service that way.

At any rate, I just (6days ago) had the da vinci with a doc in the 200's of operations, he did a great job, I am almost pain free, and wednesday I am prayful that I will be off the catheter. I dont know my outcome, but I am in a positive attitude that there is nothing to worry about, because wasting my energy on the crap I have no control over, is a downright waste of my time and energy.

There is an abundance of info on this board, ask & ye shall receive.

Best wishes for the direction you choose.

The da vinci is nothing, really !

OH, I am currently 52yrs old, not in the greatest of shape, I have a desk job and am overweight.

-marc

Trew
Posts: 892
Joined: Jan 2010

Terrible hormone shots! I read your post and now I'm crying. As soon I I heard the words, "You have cancer" I had this very bad feeling I was in for a tough ride. It has not gone easy for me. And I am now going through all those feelings again while reading your post.

If I were you I would take a hard and serious look at proton therapy. I would not surrender an inch of tubing before considering options.

I am sorry you have to go through what so many of us have been through.

I'm just having a bad night. Terrible hormones, like i said.

Ralphie62
Posts: 47
Joined: Feb 2010

Trew, you are going to be alright!!! Hormones are wicked! thank God for the support and the strength that we can draw from each other. My wife is praying for all of us...and she's really good at it....Positive thoughts!!! Ralph and Mrs. Ralph

Trew
Posts: 892
Joined: Jan 2010

There are some days I just sink, like this evening. I have always been an active backpacker. Now, when I just go for a walk I leak continually. I came in tonight as the sun was setting from a 2.5 mile walk and my pad was soaked, again. I started crying, again. Some days it just overwhelms me. There were days I could toss on 50 lbs and hike 20 miles and love every step, now I wonder. Sex is gone, testicles are about gone, I'm growing new breast tissue, backpacking is gone, I leak, my hormones are a mess, I am gaining weight, I don't sleep well, and after radiation I am still hangin' in the balances.

This stuff doesn't always come out right. And If I could have caught this problem earlier I would have gone the proton route and used surgery as a back up if the proton threapy failed, but you can never put a prostate back.

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

HI GOOD LUCK TO EVERY ONE
IM JUST TURNED 50 AND A MATE SAID GET YOUR PROSTATE CHECKED
SO OF TO THE DR BLOOD TEST PSA CAME BACK 2.6 DOC SAID NOTHING TO WORRY ABOUT I DIDNT FEEL COMFORTABLE AS GETTING UP MANY TIMES AT NIGHT TO URINATE .HE GAVE ME A REFERAL TO UROLOGIST WHO GAVE ME THE MAGIC FINGER TEST ,OH WHAT A FEELING WELL HE SAID THE PROSTATE WAS A LITTLE SWOLEN WOULD I LIKE A BIOPSY . MMM SHORT PAUSE YES A WEEK LATER BIOPSY DONE ONCE AGAIN NOT A PLEASANT EXSPERIANCE BUT IMPORTANT. 1 WEEK LATER DOC TELLS ME I HAVE PROSTATE CANCER GLEASON SCORE 4+3=7 .HE GIVES ME 3 OPTIONS WAIT AND WATCH, CHEMOTHERAPY OR THE RADICAL PROSTECTOMY SURGERY.I ASK HIM HIS OPPINION SURGERY EVERY TIME HE SAYS AS ONCE YOU HAVE HAD CHEMO YOU CANT HAVE SURGERY BUT IF SURGERY FAILS TO CET ALL CANCER YOU CAN STILL HAVE CHEMO TO REMOVE THE REST OF CANCER,ALMOST 3 MONTHS LATER SURGERY DONE INCONTINANT FOR ALMOST 2 MONTHS SLOWLY IMPROVING 1/2 ERECTILE FUNCTION RETURNING WITH HOPE FOR THE FUTURE .SOME NORMALITY RETURNING FORGETTING POST OP PAIN AND LOOKING FORWARD TO A LONG LIFE .THANK GOD FOR FRIENDS WHO TELL OTHER FRIENDS ABOUT PROSTATE CANCER AND ARE HONEST . SPREAD THE WORD AND MAKE THE MOST OF WHAT YOU CAN

muttsrule
Posts: 52
Joined: Sep 2009

Hi, James. Condolences on your Thanksgiving/birthday surprises. My small bit of advice: lose the ASAP mindset! Most prostate cancers grow slowly, and that gives one time to do research without being frantic. Very helpful to me: 100 Questions & Answers about Prostate Cancer, 2nd ed., by Pamela Ellsworth, MD, 2009; and a website I've lost: Google for Johns Hopkins Health Alerts, and that will lead you to more prostate info than anybody could handle. Or google for Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, 2nd ed., 2007. About me: PSA 4.2, T2A, Gleason 3+3 = 6, got frozen Sept.24 (cryosurgery). Now, 4+ months out, I'm doing just fine. My five weeks on the Hell-Hose, aka Foley catheter, were unpleasant, but since being unplumbed, all has gone well. No pads after the first week or so off the catheter. Were it not for the catheter I could have returned to my rather active food-bank volunteering a week or 10 days after surgery. Even so, it's way too soon for me to push cryo over other options, but I hope you look into it some more. Somewhere in my researches I came across advice to the effect that if you find a doctor whom you like, you're more than halfway there, regardless of what treatment s/he prefers. Anyway, I come back to "slow down." My best wishes to you and yours. John in Seattle but who grew up in Atlanta.

DJ7
Posts: 4
Joined: Feb 2010

James,
I am so sorry to hear about your diagnosis at such a young age.
I am 59 but still active, work full time and have a healthy sex life.
I was diagnosed 1/27/10 Gleason 6 in 3 out of 12 with a 60% dicontinuous on one of the samples plus several other "high grade PIN" I live in Maryland so am lucky to be close to Hopkins. Dr. Partin did my biopsy and I met with him yesterday. He recommends not waiting and although he can't recommend surgery over radiation he would choose open surgery rather than DaVinci if it were him. I have taken his recommendation and surgery is scheduled 3/12. I am positive and feel I made the right decision for me. I want to see my grandchildren grow up and I have a lot of bucket list things I want to do. Partin is confident of sparing the nerve bundle and with the help of ED drugs should be able to resume my sex life with my wife to some degree of normalcy.
You are very young and should check out all of your options. Just remember that with radiation you will never know the extent of the cancer in your prostate. If you opt for DaVinci or Open Surgery, you will have a pathology report plus your lymph nodes removed for analysis. Considering your age I would seek out the best hospital and Doctor in the country and make an informed decision. If I can help out any further just let me know. Stay positive and keep busy; believe me it helps
Dennis

Ralphie62
Posts: 47
Joined: Feb 2010

James, my husband and I are also from Atlanta. He was recently diagnosed as well, and is a gleeson 3+3=6 T1c, psa 4.78. He is a young 62, but we aren't worried about the kid thing. We have really been looking at Hifu and proton therapy...the lomalinda website really is a boon of information...and they are having great success with minimal side effects. we hear insurance fights it, but you can win in appeals...you should check out both lomalinda and university of Fla websites for proton beam. I have heard about fertility after proton, but not seen stats.....we also have a friend who had davinci with dr shah at St jo's and he was very pleased.Regardless of your choice, sperm banking is a great insurance policy, and will give you many children for years to come..ther are tons of options in Atlanta!! ralphie's wife

chitown
Posts: 90
Joined: Mar 2010

at 47 years fit and healthy, i had positive biopsy few weeks ago..low grade and low gleason. one option is dr shah for me in atlanta..would like more details from your friends experience...also advise on on other option pursuit..though robotic seems to be a forgone conclusion based on my needs...i think!

bdhilton
Posts: 758
Joined: Jan 2010

but I believe that Dr. Shah is the most experienced..plus he is the Director of Robotic Surgery at St. Joe, and has trained from my understanding a few thousand docs + was chief residence at the Ford Clinic...I had a friend down the street used him 2 years ago and Dr Shah did his surgery on CNN...goggle it...best of luck but check him out yourself

But_Wiser
Posts: 4
Joined: Mar 2010

Dear James,

I think you must have found your answer, short crisp and wise from VB. My father was not as lucky as you are. We found out about him quite late. His PSA had reached 200 when he was checked for some symptoms. I think VB is right. If its going to be the radio Therapy, then go for the seed. And if surgery is required go for the nervesparing robotic thing. I have read about these a lot and VB has gone past that street, but the best man to answer that will be a qualified oncologist. Hope you get past it before you know it. Good luck.

Ali

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