Newly diagnosed

Hi,

I was just diagnosed within the last few weeks and have met with my urologist to talk about treatment options. I'm 51, T1c with PSA of 3.3. I had 4/12 samples with the highest being 3+4. He's recommending robotic radical prostatectomy.

I'm a little scared about the side effects (especially the sexual ones). Not sure whether I should go for a second opinion though everything I've read so far seems to square with what he's recommending. I'd love to hear from anyone who's been through the procedure what their experiences were. Thanks.

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48 replies. Join the discussion

Hi Uke50,

Although the initiation fee is high, welcome to our "Band of Brothers"; men whose man-gland is slowly killing us. You will find us a likeable group and many of us are more than glad to share our stories. It helps us more than it likely helps those who read our ramblings.

I did not have radical prostatectomy (RP) to treat my Prostate Cancer; I opted for low dose radiation brachytherapy because the side effects are less and more manageable. Thus, I am not in a position to share any experiences regarding RP surgery. However, this forum has many members who have had the procedure and many will be quite pleased to share with you.

BY ALL MEANS - do go for a second opinion. To a hammer, everything looks like a nail. To a urologist (a surgeon), the first response is the knife. My own oncologist was more forthcoming and made a recommendation that I see a radiation oncologist before making any decision. He even made a referral to the guy he thought was he very best in my area.

My age at diagnosis last August was 57. PSA = 8.8 with 6 of 12 cores positive; Gleason 3+3. Study your options. All prostate cancer treatment options, even watchful waiting, are life-altering. (Watchful waiting, especially for one as young as you are, is like knowing there is a ticking time bomb in you and hoping you do something about it before it is too late. Yes, Prostate Cancer is slow moving, but as it gets worse, your options, and prognosis, diminish.)

After diagnosis, my mind turned to mush and I was in "shock and awe". Prostate cancer was something that happened to 90 year old men and not to a 57 year old man in otherwise good health. I studied the websites of Cancer Centers and used Google Scholar to search the scholarly peer-reviewed literature on survival rates and side effects of various treatments. I got a second opinion (didn't change that I had PC - the biopsy pathology report was the proof). I became as expert as I could in the options and survival rates of those with prostate cancer. After much back-and-forth, I gravitated toward and ultimately chose low dose radiation brachytherapy. I had 120 seeds of Iodine-125 put in my 35cc Prostate on 11-30-11 and have not looked back. A PSA at surgery + 30 days was 4.7 and I get another test in 2.5 weeks (crosses fingers).

The treatment decision is yours alone. Get help and support from where ever you can. STUDY ALL YOUR OPTIONS. Then, chose an option and move forward. I found that prayer helps and owe my good outcome to the skills of my physicians and the prayer of my friends and family.

Best of luck my brother.

Jim

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Hi Uke50,
I am 10 years out from radical prostatectomy (with follow-up IGRT at about 6 years) and a current PSA of <0.008. I've facilitated an Us TOO group for the past 10 years (started 5 months after the prostatectomy). We have developed a website which, among other things, has many of our so-called Personal Prostate Cancer Journeys on it. These have been published in our local newspaper (one per month since April 2009), placed in 3-ring binders in medical offices, etc. around town and more recently on our website: www.ustooflorence.org. You might find reading those journeys a bit helpful.

We all understand what you are going through since we have all been there. I've had 5 men in my group diagnosed either in their 40s or early 50s with metastatic disease - not a pretty picture. Every man has to decide where his priorities are and that includes the sexual aspects of treatment. This is complicated also by realizing there are no guarantees with whatever treatment we choose. My wife and I chose what we thought was most likely to provide a cure - surgery. As it turned out, it didn't provide the immediate cure we wanted but since the prostate was sent to the pathologist, extracapsular extension (penetration) was found. Even though everything else (margins, lymph nodes, seminal vessicles) were clear, it put us on our toes just in case cancer had leaked out of the extension. Based on those "good" findings, we decided to wait rather than rush into radiation. As it turned out (as evidenced by 3 consecutive rises in my PSA) some cancer must have escaped the prostate. Of course, during those nearly 6 years between the prostatectomy and radiation, there were major impovements in radiation therapy so I think it was a viable trade-off.

Along with our choice of surgery was the decision that we would deal with the sexual concerns if, and when, they arose. Our main goal was a cure, figuring sex probably wouldn't matter if I wasn't alive. I also knew one of our young men had a penile prothesis and loved it. So, I figured between drugs, shots and the prothesis, something would work...and it did...the shots. Our local urology group (Oregon Urology Institute in Springfield, OR) is what I call a complete "one-stop shop" with surgery, radiation and all the follow-up expertise for impotence and incontinence. So, I went into surgery with a lot of confidence that whatever problems I came out with could be fixed.

One other thing that was important to me was knowing exactly what my cancer was like. The only way to know that was to have it sent to a pathologist. In my case, had I had radiation first (and it didn't get the cancer that had already escaped the gland), I would have given up the option of surgery and a repeat of the radiation would not have been possible. (Now they will use cryotherapy in some situations like that). It is also not uncommon for the pathologist to find a higher grade Gleason Score than what is found by the biopsy.

I hope I haven't "muddied" your thoughts too much. There is a lot to consider, but when you have sorted everything out and know exactly what you (and your wife) want to do, the stress level will drop considerably.

My best wishes!!

Bob

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There was a recent study that was published in the British Journal or Urologoy, Feb, I beleive, that talks about success rates for different treatment options. Brachytherapy did very well. I have a copy is you want to friend me, and I can email it to you. I was 41 when I was diagnosed, and the first oncogolgist (who also did radiation) strongy suggested surgery. I was too worried about the side effects, so kept looking. I am doing Active Surveillance now with a radical change in lifestyle, and my psa is dropping 2.65 3 months ago, 1.96 now. However, I only had 3% 1 of 12 cores positives with a Gleason on 3+3. Your a little more advanced, so I recommend seriously considering treatment. I suggest, reading Invasion of the Prostate Snatchers and research a lot on the internet on how people have changed lifestyles if you are interested in AS. You should read as much as possible generally. If my psa goes up significantly, (I am testing every thing months with a biopsy in a year), I will do brachytherapy. Hopefully, focally implanted to only treat only where the cancer is, since I only have in one quadrant. There are pros and cons to all treatment and all have side effects. You do have to accept that your life is now forever changed no matter what you do, and the best advice I can give you is educate yourself as much as possible so you can be your own advocate. Don't let a particular doctor force his opinions on you. You need to decide what is right for you based on an educated analysis of your options and risks.

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Uke50,

I was diagnosed with very similar numbers on Jan 16, a day I will never forget. The first weeks after diagnosis is definitely the hardest, but it gets easier to deal with as you learn about the disease and your options. The advice to take your time to explore all the options is sound advice, but here is what I have found..

Be careful of Active Surveillance. Most doctors will tell you that your age and the 3+4 Gleason score excludes you from considering AS.

Radiation will be offered as an option as it was offered to me, but my doctor said that although it was an option, he doesn't know any Oncologist that would recommend radiation for someone my age. The problem with radiation, I've been told, is that your options for secondary treatment are limited if the radiation fails as the primary treatment. Also, my doc said that high doses of radiation at such a young age makes you more prone to developing tumors later in life just as a result of that radiation treatment.

You will find that the Radical Prostatectamy is considered by many the 'Gold Satandard'. With your numbers, the disease is most likely still confined to the prostate, and removal is probably the most complete and thorough eradication of cancer. The side effects you experience will depend greatly on the experience of the surgeon. Regardless of whether or not you choose open or robotic surgery, your surgeon should have 1000 surgeries under his belt. the more the better...experience counts. You should check to see if you can get to one of the major cancer treatment centers ( i.e. Sloan Kettering or Johns Hopkins etc...) where they perform 1000's of surgeries each year.

Read Patrick Walsh's 'Survivng Prostate Cancer'.

Visit Sloan Kettering's online Nomograms and The Partin Tables and Han tables at Johns Hopkins website.

Finally, there is a lot of information on the Internet, and it can be overwhelming. Trust government websites and the websites from the major cancer centers.

Good luck on your journey

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uke50,


As others have pointed out, each person with prostate cancer may respond differenly to the treatment selected. With the dianosis you have been given, you have time to investigate all options, read and research, and talk to others who have had such treatments and their responses. No treatment for prostate cancer is without the possibility of side-effects. These can vary greatly. Some men will have no or minimal effects which gradually resolve and others may have longer term effects which may require therapy.

The advice I would offer is:

1. Have your pathology slides sent for a second opinion to a pathologist who specializes in prostate cancer pathology
2. Maintain a file with all medical documents, doctors reports, clincal laboratory values. etc. You should ask for these whenever you go for an appointment. For medcial visits that you have already had, call the medcial office and ask for a copy.
3. Whenever you go for a medical visit, consultation, procedure, etc., take someone with you (spouse/partner, friend, family member) to take notes.
4. Attend a prostate cancer support group where you will find men of all ages who have had most forms of therapy. The closest Us TOO International chapter to you in Severna Park is in Annapolis. Below is the information on meeting place, time, contact person, etc. Many of the Us TOO groups also have spouses/partners attend.

Annapolis Us TOO Anne Arundel Medical Ctr PC Spt Grp
Anne Arundel Med Ctr, Clatanuff Mtg Room
1st Mon - 6:30 Pm (Occasional Exceptions)
Terri Hardesty RN thardesty@aahs.org
443-481-5862

The best to you as you make your decision and receive treatment.

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uke50,

Sorry you are joining our group but glad that you are joining at such an early stage of PCa. It tears me up that so many men just refuse to get checked until they are at a more advanced stage. Congratulations on being smart enough to get checked early.

I was diagnosed at age 59; PSA of 4.3; 4 of 12 cores with cancer; Gleason score of 4+3. I opted for surgery. I am now 3+ years post surgery and my PSA remains "undetectable" - my favorite word in the English language.

You indicate that one of your major concerns with choosing a treatment option is the potential side effects, "especially the sexual ones". I did not have "nerve sparing" surgery, so my results are probably a "worst case" scenario. But, (and this is something that many men don't/won't believe), a satisfying sex life is possible after prostate surgery, even if everything doesn't work the same way on it's own anymore. As Kickin-pca pointed out, my wife and I figured that we would find a solution to whatever side effects showed up and we have. For us, shots have also been the answer. (One somewhat humorous aspect to the shots is that "performance anxiety" is a thing of the past. LOL.) All of the feeling and sensations are still there. And, probably as a result of going through all this together, the emotional aspects of love making are even stronger. All aspects of your life will be different as a prostate cancer survivor, but experimenting and finding out what the new "normal" will be can even be fun.

In addition to this web site, I regularly check out www.prostatecancerinfolink.ning.com. In addition to the books, etc. mentioned above, it is an excellent source of information and support. There is even a group specifically for wives and partners so all of the bases are covered.

Good luck finding your right answer for treatment and allow me to be the first to welcome you to the prostate cancer survivor's group.

Ken

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uke50

Oops! My Gleason score was 3 + 4, not 4 + 3. I don't type so well early in the morning! LOL

Ken

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Thanks so much to all of you for your feedback and support. I greatly appreciate it since this is all so new to me and I'm still in a little bit of shock. I talked to my doctor yesterday and he said he's done about 400 of the robotic procedure but I'll need to follow-up with him to see how many open prostatectomies he's done. I also asked him if he thought there would be any value to seeing an oncologist since they're supposed to specialize in cancer. He thought that would only be useful if I was interested in one of the radiation treatment options instead of surgery. If the surgery doesn't resolve the issue then he thought seeing an oncologist would be useful.

I can't help but think how recently radical mastectomy was the recommended treatment for breast cancer and wonder if the day will come when radical prostatectomy falls into disfavor. I guess I need to live in the here and now and not take too long to make a decision once I've done more research on the options. Thanks again.

Greg

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Two years ago I was 67 years old and had numbers very much like yours. I had open RP and that part was not bad at all. I had a little ongoing trouble with scar tissue formation that was very discouraging. I had minor urinary problems for a few weeks, but nothing too bad. After the scar tissue problem was resolved my life went on as before, except for the ED. That problem would not go away.
In January of this year I had a penile implant. That surgery was not much fun, but you recover quickly from it. ED is a distant memory now. I am extremely satisfied with my implant and my quality of life. I will never be more than a few seconds away from an erection that is better than it was as a teenager, and this will still be true when I am 80 years old. My doctor gives me a 95% chance that I will never see this cancer rear its ugly head again. I have suffered and I have paid a price for my decision to have surgery, but looking back I would not hesitate to do the same thing again. You can not have any quality of life if you are not alive, so do your homework, think about it, and do what you have to do. Never look back and never say why me. Life is for the living, so get out there and live. It will not be the end of the world.

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Uke50:

I'm 41 and was diagnosed last November. My tumor was high volume in both lobes with a GS of 3+4. My PSA was 8.57. After exploring all options I decided to go with the Robotic Surgery. It was done on Jan 17, this year. The outcome was excellent. Clear margins, no extracapsular extension, no involment in nodes or seminal vesicles. My dr was able to spare the nerves and I resume sexual activity, fully normal, right after catheter removal. Incontinence was not a big issue, some minor leaking for a month, but everything is also working fine in this are.

After surgery the GS was downgraded to 6, but still the tumor was on both sides of the gland.

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Yes, sorry about the diagnosis. It's quite a bit to take in for awhile. I am 59, had numbers nearly identical to yours. Had robotic prostatectomy two months ago, and am currently running 6 miles every other day, with no ED problems, and very little incontinence. In fact, I feel better than I have in a long time. So, I just want to encourage you in case you elect to go this route. I know my results aren't quite the norm, but you have a very good chance to recover and do very well. God bless you in your deliberations in the days ahead.

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Lots of good info and suggestions from everyone here. As they say, there is more than one way to skin a cat. I will add that you should research "proton therapy" if you are concerned with side affects and quality of life. Read Bob Marckini's book: You Can Beat Prostate Cancer Without Surgery. Loma Linda U Med Ctr has been doing proton treatments for PCa for over 20 years. There are nine other proton centers in the US with many more being built including two by the Mayo Clinic. I am presently in treatment at the CDH Procure Proton Center in Chicago. If you would like more info about my stats and treatment check out my journal here. God bless you on your journey no matter what you decide to do.

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Uke,
I was diagnosed Nov, age 52. PSA was 5.1, Gleason 3+4=7. Just had the Robotic Davinci surgery 2 weeks ago exactly.
No sign of spreading beyond the gland. Both nerve bundles were sparred. The first 5 or 6 days was a lot of pain. Catheter came out day 6, was put on low-dose Cialis @ bedtime. After 2 doses, erections returned (about 75-80%) within a couple days about 99% normal... which for 2 weeks post MAJOR surgery is a damned good start.
I got a 2nd and 3rd opinion (including Oncologist) and ALL agreed for "young" men like us, surgery is still the gold standard. Burn it or cut it out. *If you burn it and is returns or spreads, you've got problems.
Radiation was certainly tempting, watching these guys at the Onc office pop in & out for their 15 minutes zapping but, they were all in their 60s. We are not. *There is a reason why our cancer showed up a good 10-15 years earlier so, I chose to cut it out.
No regrets and (finally) a sense of well-being.
Best of luck,
Chotty

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Greg,
As you can see we are a varied group here. Just as each man is different, each cancer can be different. That's one thing that makes treatment choice a bitch. I think you can also tell that the men who were most invested in their treatment are the men that are doing well with the results of that treatment. They are aware of what could happen and are prepared to live with that choice. They are well informed and they have shared/talked with their wives and lovers about what the future may hold-and are at peace with that. Most will say "we" will deal with that as it happens.

As you learn more and more, you should find that your thoughts about treatment will become clearer. A lot of men find themselves gravitating towards a particular form of treatment. Some men will find that their condition will dictate a certain type of treatment. You are lucky because you do have choices.

You are at the right place to learn and share your questions. Another group I belong to reminds me that when things become too much all I have to do is the next right thing, and take it one step at a time. This has been good advice for me when I get overwhelmed.

Good luck, keep reading and posting.

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Sorry to hear that you have joined our club. At present, no one treatment has been proven to be superior to any other prostate cancer treatment. Just because someone else has done well or not so well, has no bearing on what you will experience. All treatment types have the possibility of side effects and it depends on the individuals physical response to the treatment whether or not they have any. You need to decide what treatment you feel is best for you. Regardless of side effects, the main thing you want to accomplish is surviving your cancer. Educate yourself and get treated and go on with your life. Hopefully things will go well.

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Thanks again to you all for your advice. It's been a great help to me and very reassuring at a difficult time. I feel a lot more optimistic about things now and my wife has been very reassuring. I've been doing some more researching, ordered a couple of the books that were mentioned, and scheduled an appointment for a second opinion. I'm lucky to live near Hopkins so that should give me a lot of great options at one of the best hospitals in the country. Take care and keep the faith.

Greg

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Greg,

Johns Hopkins is where I'm going next Tue for my open RRP with Dr. H Ballentine Carter. Hopkins basically invented the prostatectomy and is where Dr. Walsh developed the anatomical approach to surgery making nerve sparing possible. Below is a link to a great interview with him that I found reassuring during the first weeks after diagnosis.

http://www.charlierose.com/view/interview/9016

They've been ranked #1 in Urology for 21 years in a row. I'd say you're lucky to be near them..

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I had davinci robotic surgery about 9 months ago. Less invasive, less pain. If you have to have the prostate removed, robotic is the way to go. My pre surgery psa, etc was identical to yours. The lab results showed that the cancer was within the prostate and nothing in the margin Great. I was on pads for about 2 months. Not alot of leakage but some. Sex? That is another matter. I don't believe anyone knows until after. The Dr gave me CIalis mainly to restore blood circulation. He recommended a vacuum device for the same reason. I am 73 the sex is not as important as it once was when I was younger. Some Drs will start testosterone addition after a year of 0 PSA readings. Mine won't. So, I am seeing another DR about that . I have read studied that testosterone after surgery has been very successful. Good luck with your choice. I has a friend who went with radiation and he died after 10 years from PC. There are a lot of options out there. Mt choice was I wanted it out.

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Uke50,

I have recently been diagnosed (2/10/12) with prostate cancer with similar numbers as yours (GL 3+4, PSA 2.7,
T1c, 7 of 12 cores with cancer...one coming back with 100%.. remaining of 30% or lower, bone/MRI/prostatint scans
all negative). Trying to determine what's the best treatment for me. Have consulted with urologist and radiology
oncologist and both recommend their respective expertise. As I do more research I find more possible treatments.
(surgery, radiation, HIFU, CybeKnife, Chryotherapy, Proton beam, Hormones... and the list goes on). I feel I need to
take a vacation from the 9 t0 5 job just to gather all the information. Everyday I read more and everyday my preferred
choice changes... some days I take a timeout just to get away from it all to sort it all out.

I have a question for the group.... I read some men opt to go to one of the well-known major hospitals out
of their local area for treatment.
How does one initiate that? Other than to get the best treatment possible, are there other reasons why the local
resources were not used? I'm in the Denver area, how do I find the doctors locally that are the top practitioners
in their treatment field?

Good luck on your decision and treatment and thanks for starting your thread... I've found alot of information because
of it.

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Well, for me, it started with my local urologist' diagnosis. He recommended that I seek a second opinion and suggested I go home and investigate doctors that I would like my slides sent to. By the end of the week we had a list of doctors and went back into our local urologist's to see if he had heard of any of them..He had heard of most, but recommended the one from Johns Hopkins, Dr. Carter, head and shoulders above the rest. We agreed, so he called Dr. Carter and made arrangements to have the slides sent.

We called the next day to make the appointment and that was that..

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