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Just Diagnosed

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

Hi, I am 47 years old and was just diagnosed on Friday. My PSA was 2.9 and I was told that was a little high for my age so we did a biopsy. Gleason score was 6 on on specimen and a couple of others were what they called suspicious. My urologis is recommending robotic surgery. My wife and I are doing a lot of reading/research to determine if surgery or radiation is the right way to go.I have two kids and am struggling with how and what to tell them. My oldest is away in college and not sure how to handle telling him. My wife is being very positive but I can tell she is scared. Has anyone had the robotic procedure?

spottydog10's picture
spottydog10
Posts: 73
Joined: Jul 2009

Hi,
I had the robotic on Sat, check out my posts for details.
Feel pretty good and looking forward to getting the cath out next week.
Lots of people on here are very helpful so ask away.

Cheers,
Mike

NM
Posts: 214
Joined: Jul 2009

Hi I am 52 years old with 2 kids also. I had Davinci on Sept 3 rd and have never regretted it it. My wife also was scared but I think to be scared with a cancer diagnosis is normal.

Read all posts here and also did you get a second opinion? I had my second opinion at John Hopkins, didnt change but felt much better. My psa was 5 .7 and gleason 3+4 = 7.

I think you caught it soon enough and 1 thing to remember if you have davinci now you can still have radiation later.

As for your kids I was completely open and honest with them and yes they worried but I had to let them know and their support was important too.

I had 5 of 6 cores positive for cancer but I also had no positive margins and first PSA after was .05 so OK so far.As each of us is different you never know but you have seem to caught it early.

Prayers with you and good luck on any decision you make.

Nick

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

I was where you are just a short time ago. I was diagnosed in July and I have learned a tremendous amount about PCa in that time.

The first thing I have learned is that with a Gleason 6 and such a low PSA, you have plenty of time and options. You will want to get at least another opinion or more before you make any decision. It seems that the Urologists seem to want to act quickly upon diagnosis, when many times there is plenty of time for further option discussions.

What you really need to do is talk with a Oncologist. Preferably one who specializes in PCa. The perfect scenario is to see a Group that has both Surgeons and Radiologists in their staff. That way you can have a group discussion about your individual case and make an informed decision.

To answer you question, I had da Vinci surgery on September 17. You can find my journey throughout the entire process on any of my posts. They all contain my name in them "Sonny".
I tried to detail everything from the decision to the day to day recovery after surgery. Many of us have done this just so guys like you have the information available when you begin your own journey into the path of PCa.

If you have any questions, feel free to ask the specifics. You will find that nothing is too sacred to talk about here. There are many discussions about PCa, ED, Incontinence and all of the other aspects of PCa and the alternative treatments.

Welcome to the forum. Good luck in your quest for answers.

Bless you and your family as you begin this journey,

Sonny

P.S. It would really help if you include all of your stats for the others. There are many knowledgeable folks here to whom these stats mean something and tell them how to answer you questions.

I am posting mine to give you an example;

61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero

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

However, I am fairly new like you having just joined on Oct 27 after I recieved my call with biopsy results....know that there are many in the same boat as you.

Knowing just the little stats you gave out I would say you are at the very beginning with such a low PSA. The best advice I can give you is to seek many opinions from different doctors and sources....you will find that some may have differing oppinions of what your particular case needs however over some time and diligent effort on your part you will be able to decipher the differences and the solutions start to form and you start feeling more comfortable with making a decision. I have decided for me the best answer is to do the divinci...I have a palpable tumor so I want it out and I mean COMPLETELY out. I have a shot at getting this out and never having to worry about it getting the best of me...but then again I may need followup RAD to cleanup anything that may have extended out of the prostate capsule.

Here are my 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
Latest Urologist thinks mine is not T2a but T2b because the cancer was found in three cores with 3 different positions from top to bottom of the right side lobe.

This means I have about a 38% chance of it being outside the prostate capsule.

AGain read and research and go see as many doctors as you can because you only get one shot at it and you want to be as confident with, and at peace with, the decision you make on your treatment path. I am of the opinion I don't really care if the insurance company pays for the all the doctors I'm seeing or not...I want to feel comfortable with what I choose and I grill the heck out of each and everyone of them. I have a 11 year old son and 14 year old daughter that live with there mother in a different state. I plan on telling my son while he visits for Christmas...the daughter is not visiting her father because she is now blaming me for many things she really doesn't understand but thinks she does. She will unfortunately find out from her brother when he returns or he texts her while here on his visit. So you see I have a much harder situation perhaps....but I am going to just be honest and not try to scare the guy but be honest and let him know the story. I am hopeful and think I will come out of this just fine as do all the doctors I have talked to...but you never know each of us is different and there are unknowns that may not be detectable until they happen to us. Like
Sonny says...."Each Day Is A Bonus!"

God bless you and your family

Randy

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

First thanks to all of you for your thoughts. I will definitely look into getting a second opinion. As Sonny indicated it would be a good idea for me to put my stats out here

47 years old
PSA 2.9 (which I was told was high for my age)
Exam was normal, no increased size, lumps.
Biopsy 11/7/2009

10 samples taken
5 Benign

Right Lateral Mid- Small Acinar Proliferation - Suspicious
Right Base - Adenomatous and Fibromuscular Hyperplasia
Right Mid - Small Acinar Proliferation - Suspicious
Right Apex - Prostatic Adenocarcinoma 3+3- 6 on Gleason scale involving 10% of the tissue
Left Mid - Small Acinar Proliferation - Suspicious

God Bless all of you
Joe

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

Your stats say you are at a very early detection and that you have time to determine the path.

Start researching all the various paths you can take with treatment and involve your wife in every move as it really is a joint decision wether or not a person wants to admit it or not!

Read, read and read some more.....ask questions and more questions and even more. We are all here for you!

Randy

NM
Posts: 214
Joined: Jul 2009

I had a biopsy that was 24 needles broke down into 6 sections. I dont know anyone here who had this type of biopsy. In each section except 1 cancer was found and all were over 80%. I went into surgery expecting the worse but came out with no positive margins and even a lowering of my gleason from 3+4=7 to 3+3=6.

As far as too young to have that high a psa score unfortunately cancer knows no age limits. I was also wondering if you dad has PC too. Mine did and it seems I got it almost 15 years earlier than he did or maybe we have better detection now.

Get the cancer out was my mantra going into this so I chose Davinci and so far no regrets as i didnt feel there was any other way to approach this at my young age. And also if I need radiation later that option is still open to me.

I have no incontinence and my ed is improving. If you go the surgery route look for an experienced doctor and talk to former patients as they are a big sign of not only a experienced doctor but one who tried to hide nothing and is proud of his results.

I rambled a little as I am promp to do and i still feel I left too much out.

Prayers to you and yours....Nick....age 52

William Parkinson
Posts: 60
Joined: Oct 2009

Joe, you have only one site of cancer, the right apex, plus you have a Gleason score of six. With this amount of cancer you have an excellent chance of cure. Men with small tumor burden (in your case just one core positive), low tumor volume (10% of just one core), and low PSA, stand an excellent chance at cure. As mentioned earlier, it is far easier to do surgery first and then have salvage radiation later, should the cancer return, rather than the other way around. Plus, with surgery the results of your PSA readings later on are unambiguous. With radiation (both EBRT or brachytherapy) it can take a full four years for many men to even reach their PSA nadir. In additon, roughly one-third of all men have the PSA 'bounce', where the PSA suddenly begins to go up, but yet is of no clinical importance. Thus, it can create a confusing picture to both doctor and patient alike; namely, has the cancer returned or is this just a PSA bounce? Moreover, biopsy cores can appear as positive for cancer as far out as three to four years later on (even though the cancer cells can't undergo mitosis, where cells divide and create new cells). This will add even more confusion about whether the PSA rise is meaningful or not. So, it is far more clean cut (no pun intended) when you go with surgery than it is with radiation. Finally, men who chose radiation have a slightly elevated risk of secondary malignacies such as bladder and rectal cancer. So for me, and many men here, that has been our choice. I wish you the best of luck in whatever option you choose to treat your cancer.
Cheers
Bill

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Here's what you tell your children... You're a very lucky man in your misfortune. Your very low Gleason score and the early detection saved your life. You have a far greater chance of being killed at the age of 105 by a jealous husband than dying from prostate cancer!

Jminnj, you have plenty of time to do your research and to choose the option that's best for you, but the ultimate goal is to get rid of the cancer while maintaining a good quality of life.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

I was diagnosed in March, 2009. I choose active surveillance, that is closely monitoring my cancer, while not have any side effects of surgery, radiation, or hormones. When and if ever my cancer progresses(which I hope not), I will probably have surgery, however I plan to continue with active surveillance and a high quality of life as long as possible.

Many men's prostate cancers do not progress.

Gleason 3+3= 6
2 of 12 cores, less than five percent in each, March 2009
PSA's Jan 2.2, July 2.5, Nov 2.6
endorectal MRI with a Specrocopy-- no nodule involvement - april 2009: T1
Aureon Molecular test - 97percent chance that disease will not progress in next eight years, confirming my active surveillance decision

Since yours was an early detection like mine, the cancer is highly treatable....as you speak to doctors in various disciplines you will note that they all want to treat you.......you are not in any rush to make a decision, but become educated.........go on with your life.

Ira

P.S. For the most part it is appropriate to have 12 cores done, not 10.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

...older than you..........anyway speak to a medical oncologist to get his take.

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

Not sure why he only did 10 as opposed to 12. Talked to a few folks in my area who are doctors and they also recommended a second opinion. They gave me some names of doctors they know and also recommended going to Sloan Kettering in Basking Ridge. The one thing they all said was don't rush into surgery just because the urologist wants to go that route. Take time, and get as much info as possible. Again I want to thank everyone, these first couple of days felt like I got kicked in the gut, but knowing that there are options and hearing the jourines of others has helped me a great deal. I will keep you posted as I go. Thanks again. I wish you all well.

Joe

hopeful and opt...
Posts: 1282
Joined: Apr 2009

so that you are not under or over treated. ...dr epstein, john hopkins is a good choice.....it is very complicated so you want an expert for a second opinion

We all, every one of us goes into shock and all the negative feelings during the first month or so.....this will pass....go on with your life

Ira

NM
Posts: 214
Joined: Jul 2009

When my diagnosis first came I was pissed and bitter about it. Calmed down ,researched got myself under control and now Iam almost back to normal,if i ever was normal,back to work (in a sawmill) do heavy lifting no problems.

Dont rush get second and third opinions if it makes you comfortable and my prayers are with you.

Nick

RiverRider
Posts: 15
Joined: May 2009

You need not concern yourself about getting 10 biopsies versus 12...
I have read a lot about the difference and came up with data that 10 samples will find about 95% of what 12 find. I know the math looks different than that. Studies show otherwise. There is little reason to suspect that one more core on that side of your prostate would have found anything more.
I have been served by a doctor who wrote some of the original journal articles 10 years ago when the move from sextant (6) core biopsies went from the 6 to 8 to 10 and onward.
I have read many subsequent article where they studied anywhere from 9 to 10 to 11 to 12 to 13 and even 24..
I'm telling you, in all likely hood your 10 core biopsy was just fine.

As to your current situation, as everyone says, take your time.
You were a borderline call on doing the biopsy as soon as you did. Lots of other excellent doctors would have waited another 6 months or a year before suggesting a biopsy, waiting for another PSA

As such, you'd be 6 to 12 months down the road before even knowing you had a positive biopsy AND that biopsy might have missed finding that one sample of 10 percent.
Finding prostate cancer early is not beneficial in every case. Waiting is not always dangerous.

So, you see, you could no doubt wait a entire year and not affect the outcome which ever path you choose. This is NOT a OMG (Oh my God)...I'd better do something quick.

I'd say it will take you a minimum of 3 months to even learn enough to make a sound decision....a decision that is right for your specific situation which is not urgent. Right now, you are only a few days into the process.
That decision may be to hold off on making a final decision for 6 months or a year.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

RiverRider, you're absolutely right. This is not the "OMG, I'd better do something quick" situation. There is indeed plenty of time for Jminnj to do his research and to make a decision that is right for his specific situation.

By the way, my PC journey started when regular check ups saw my PSA go from 1.72 to 4.96 in 3 years. A biopsy session was set up. Only 1 out of 8 samples came back positive with cancer at 20% and a Gleason score of 6 (3+3). I then did watchful waiting for 6 months while I researched all the options. I finally opted for laparoscopy surgery to remove the prostate. My PSA actually dropped to 3.71 then to 3.40 during the six months BEFORE the surgery. The prostatectomy was done 2 years ago and my PSA has been holding at 0.00. I guess it doesn't get any better than that.

Kentr
Posts: 111
Joined: May 2009

As RiverRider said, "You need not concern yourself about getting 10 biopsies versus 12...
I have read a lot about the difference and came up with data that 10 samples will find about 95% of what 12 find."

I only had ten samples taken and the doctor said it was appropriate because I actually had a SMALLER than average prostate - something you might want to ask your doctor about.

sfis
Posts: 15
Joined: Nov 2009

I had robotic surgery on 10/26. I felt it was best for me - PSA 3.5, Gleason 3+4 in two needles and 4+3 in one needle. I am 57 and in good health, and not overweight. If you decide on surgery, the most important factor (especially if you go with robotic) is the experience of the surgeon. I recently read a study on the results of robotic vs open surgery, and it seemed to conclude that the number of surgeries performed was a big factor. There were quite a few doctors that has done "a few" robotic procedures. Don't even consider a surgeon that hasn't done a lot of the procedure. The first doctor I talked to had done 140 surgeries. I ended up using a surgeon that has done 400 surgeries, and am very happy with the results so far.

Telling the kids may be hard. I told my youngest in person the day after I found out, and it did not go well, but was my fault. It really set in that I had cancer that day, and I couldn't tell her without crying. I told my older daughter (like yours, away at college) a few days later without any problem. It got easier after telling more people.

Good luck and prayers!

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

Well I have been doing a lot of reasearch and actually had a good discussion with someone I know who had the Laparascopic procedure done 6 years ago. He is doing superb so that was good to hear. I am waiting to hear back from Memorial Sloan Kettering in NJ as I am going there to meet with their Urologist/Oncologist to discuss options. Will also be meeting with my Urologist next week to talk about the options. We have decided to wait a little bit to tell the kids. My son is away at college and has his first ever finals in two weeks. I want to wait until after the finals are done and I can tell both of them in person. I want to make sure that I frame my discussion in a positive note, that it is early, it is treatable, etc. Again thank you all for all your support. My thoughts, prayers, hopes are with you all.

Joe

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