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I just got diagnosed on May 12, 2009 with PC, keeping my faith and head up.

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hello all. I am 48.
I have been reading lots of the forums here for the last couple of days.
I just got the news on May 12.
My PSA Went from 3.06 on Feb 6, to 4.46 on about Feb 12. Apr 20 7.46.
Had the biopsy done on May 5th. Doctor took 6 biopsy's, 3 left and 3 right. The left side is clear, right side had one biopsy positive at 5%. Gleason 3+3=6.
Just had the full body bone scan done today May 14.
Just wanted to say reading all of your posts is helping.
I am not afraid, sometimes the anxiety gets to me waiting to hear about results.
God is with me and will not leave me during the trials coming.
My sister in law said a great thing on Sat before I knew I had Cancer. Fear is not of God. That in itself has been a great thing for me. I do have bouts with emotions coming up, tears out of nowhere. I hope not to offend anyone with my words.
Peace and best wishes to all of you.

Paraplu
Posts: 37
Joined: Feb 2009

Hi there, yes waiting for the test results is the worse thing. Waiting for the biopsy results, the surgery, waiting for the results after surgery, the first PSA test afterward and the 6 months for the next one. It's waiting game from there on out

Glad you have a God, and we're here to respond and share.

lion1
Posts: 240
Joined: May 2007

Paraplu,
You're right it turns into a waiting game. It's like climbing a staircase, one step at a time. Only dwell on the next step. Don't let your mind think too far ahead. Leave those worries to God. That what he's there for. We're only human. The only control we have is the decisions we make for treatment. Thank God we are all so blessed to have so many incredible Doctors out there. You'll do fine and you'll make it through. Just don't try to climb the staircase too fast. Remember one step at a time.

It all seems overwhelming at first, but what I did is I told myself, what's my next step and I took it, then I said researched and studied my options along the way, moved to the next step, stayed positive and said if others could get through it so could I.

Yes, everyone's experience is different, but everyone has to eventually make their way up the staircase. You could read my posts for the last two years, and see how I'm still climbing the staircase and still positive.

Lion1

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

That is the way I try to do my stairs, I like that analogy. It can get overwhelming, as Lion1 stated, But remember, we are here for each other. I have gotten so much support from these pages, throughout this life altering stage of my life. Read , read, then read some more.
Jim

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

I along with everyone else on here I totally understand the waiting game. Everything is always, wait to get a test or procedure then wait for results. I can relate with the anxiety, it hit me hard. The emotions are normal and will simulate a roller coaster. Surround yourself with friends and loved ones, and don't refrain from drawing on their love. I wish you the very best, keep us updated on how things are going.

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Thank you all for your Encouraging words. I have read lots of your posts in the past few days.
I found out at work today of a coworker that had his Prostate removed at Christmas time. And another that just got his results back from a biopsy, all is well with him.
Man this PC really does reach out and hits lots of people. I have had so many people come up to me and tell me about a friend or family member who had or has PC and how they are doing.
The recover rate is awesome.
Thanks again, and keep on getting better.

rickyb112
Posts: 2
Joined: May 2009

Hi my name is Richard Bell and my dad was recently diagnosed with prostate cancer.
I have to be honest, it scared the hell out of me.
I'm an American disabled veteran rated at 100%.
I've fought, I've jumped from planes, and I've shot the biggest weapons you can possibly shoot,
but never have I've been so afraid in my life.
My dad is super man, he's a great man.
he was a single father for years of 4 kids.
3 boys and 1 girl. My father made me who I am and I don't know what I would do without him.
God like I said I'm so afraid.
I never pictured him being hurt or sick.
To be Honest I don't know what to do right now.
I haven't been home since 2007 and I'm sort of afraid to go and see him in his current state.
I'm also looking for a way to find help for him.
I have no idea where to start.
He's currently having treatments done but he's paying so much money outta pocket to cover his hotel and everything.
Can someone please give me some advice or something so i can better help him.
By the way, I've been in life ending experiences and made it out alive, I fought for freedom and my family.
I want you to know that everyone that's going through this same situation are really strong and I admire you and my dad because I don't know if i would have half the strength you guys have.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Remember that prostate cancer grows at a very slow rate, so you are in no rush to take action right away. Really take your time to make the right decision and do your research, there is no rush at all. Your numbers tend to show that you are at an very early stage.

I wonder why there were only 6 cores taken, usually 12 cores are done?

I believe that a second opinion of your biopsy results is critial. Johns Hopkins, dr. Epstein is a good choice. (It may be that the orginal pathologist could have made a mistake.)

We are with you,

Ira

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

I go for the consultation with the Doc today and will get the results of the bone scan also.
I really don't know why only 6 on the biopsy, from all I have read on here and talked to people who are or have gone through this 12 seems standard. I will ask the Doc today.
What do I need to do for the second opinion on the biopsy? Will the results be in my records? I guess pictures?
Thanks for your post.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

...you can either have them send it to another institution, or you can get it from them, and send it yourself.( I chose to have them sent the slides for pathology review).............(a second opinion is covered by insurance).

I'm not a physician, however I wonder why a bone scan was done when your gleason is 6. I read the American Urological guideline, and noted that they do not recommend a bone scan with gleason under 8 unless there are extenuating(sp) circumstances.

Ira

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Richard, you say you have not been home since 07. Have you talked to your dad? You sound like your in shock. But you really need to be there for your dad, if not in person, by phone. Sounds as if he was always there for you...now its your turn. Prayer helps also.
Cheers,
George

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hi Ira. I am in the process of getting all my records and changing doctors. My visit on Tues went weird.
Bone scan was fine. Only things that were abnormal were, C1 under the COMPMET test result was 109, should be between 98-108. Alk Phos total under the EGFR test was 48 , should be between 50-136.
Does anyone know what these 2 readings are?

The doctor said I was going to be fine, he kept misreading my PSA results. Said he wanted to start hormone therapy right away, 1 shot every 4 months and a daily pill.
I asked about the 6 cores on the biopsy instead of 12 like usual. He said he really hated to put a guy through that many, he was afraid they might not comeback?? I asked if I would be sent to a oncologist, he said they can't do anything for me??
My wife ad I were in shock on the way home.
We had a copy of all our records made before we left. Once we read the results that night, we found out the doc had only sent 2 cores from the right side (where did the 3rd one go???) and 3 from the left. The cancer is on my left side not the right as I was told from the doc in the first place.
WOW....not that it matters which side it's on but for them to tell me wrong and all the other strange things that have happened.
We are in the process of getting all my records and slides etc and going to the Urologic Specialists of Oklahoma here in Tulsa,OK.
I have zero confidence in the last doc and his professionalism was not there, he didn't seem very confident in much except that I was going to be OK. I like that part.
I am getting scared about the medical system right now, but I know that all will be OK.
God is with me. We can find a good doc.
My wife is handling most of it good.
Sorry to be a negative poster on this message but wanted to put it out.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

First, you are not negative. After I was diagnosed by a urologist, I saw an oncology radiologist, who scared the crap out of me, with lot of false information, and wanted me to take various tests, and told me that I had five weeks to make a decision. (By the way I am doing active surveillance now). Anyway, the next doctor that I saw , and am currently seeing did not think very much about this guy, and explained to me why he was wrong.

There are incompetents and sharks in the medical profession. We have to be empowered.
Read books, there is one by Walsh, the library has various ones- there's also one by steven b.strum that I am currently reading(it looks like a real winner; find support groups in your area, go to all of them.

If you have to, go outside your area for medical help......find the best.

Remember, you have time to make a decision. Do your research, but keep moving.

Call the doctor and ask about the bone scab results; also did you get a copy of the bone scan film, so you can have if you need it? You can also ask your next doctor, or research it.

Ira

P.S. I know that you are strong and will handle this!!!! How do I know? Well, in Feb., I went to Okla City for the first time in my life. My very good friend bought a new house in Edmond, on the outskirts of the city. She showed me the storm shelter that was built into her garage (for 3,000) I thought to myself, boy what a waste of money -- the next next day there was a tornado that touched down a couple of times in Edmond, one about a 1,000 yards from where I was---boy oh boy , what a great investment that she made. Anyway if you can handle the weather in OK., beating this PC will be easy for you.

RiverRider
Posts: 15
Joined: May 2009

I think you are very wise to see the uro specialists.

Just wondering, exactly what kind of doctor was your original guy... a urologist or a primary care doctor? Sounds strange, him wanting to put you on hormones right away without allowing you to get a second opinion.
But, then again, we don't have all the facts.

In your original post you said the following:

"I just got the news on May 12.
My PSA Went from 3.06 on Feb 6, to 4.46 on about Feb 12. Apr 20 7.46.
Had the biopsy done on May 5th. Doctor took 6 biopsy's, 3 left and 3 right. The left side is clear, right side had one biopsy positive at 5%. Gleason 3+3=6."

Between those two February PSA tests and the April 20th test, didn't the doctor give you any antibiotics or anti inflammatory medication to find out whether your higher PSA score was due to prostatitis?
It would be very unusual for a PSA test to go from 3.06 and 4.46 in February, to 7.46 in April. That kind of rapid jump is far more likely to be due to something other than prostate cancer.
Now, it appears that you still may have prostate cancer, but you should know that the jump in your PSA test scores do not indicate you absolutely have a "high velocity PSA" type.
Personally when you see your next doctors you might want to find out what your true PSA
It would be most unusual for a true PSA score rise, caused by prostate, to jump up so suddenly.

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hello My bad.
I did have bactrim antibiotics prescribed by the doc towards the end of Feb, 10 day dose. After a week off the antibiotics I called in and had 14 more days of the antibiotics prescribed. I had some feelings in the lower area that was thought to be prostatitis still.
Waited about 10 days to let the antibiotics get out of my system then did the blood work for the Apr 20 PSA result.
I hope for a new PSA check. It biopsy will have been 3 weeks and 2 days past when I see the new doctor.
Thanks for your reply.

Hi Ira.
I do have a copy of the bone scan on CD. I will ask the next doctor what the different things mean on the scan.
You mean those strong winds we have every now and then? Just kidding. My family and I have been in the closet more than I like. The radar technology is getting awesome. They can detail down to street level where the rotation is now.
Thanks for you uplifting posts.
Keven

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Hi Keven, One diagnostic test, not commonly prescribed,is a MRI combined with a MRS (Spectroscopy) which basically makes the results of the MRI more accurate. The MRI is covered by insurance , however the MRS is considered investigational and is not, and you have to pay for it (It cost me 900.00). Major hospitals do the MRS. It determines if the tumor is contained in the prostate, will tell if there is any nodule involvement, size and location of the tumor . You will really be able to be staged. There is also a color doppler prostate biopsy test(covered by insurance) which is very extensive, that I think that the results is similar in a lot of ways. I've had the mri/mrs( my doc wants me to have it annually), and I am currently investigating the color doppler biopsy. I think that I will get my docs opinion about the color doppler biopsy.

When I was in the shelter, I had a radio, and heard announcements specifying the streets locations of the tornado . I'm sure that they did a good job however, I didn't know where any of the street were. I prefer earthquakes. I like to shake, rattle and roll. There was one last week.
Ira

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Wow, what a nightmare. I'm sorry you had to start off this already unpleasant experience this way. It seems that a lot of guys seem to be able to recommend docs when they live in the same area as the poster does. I suggest starting a new post and ask folks that may live in your area on what doctors they used and recommend. At least it gives you a lead to research. Just a suggestion.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Hi,
I'm 54 and just found out about 1 month ago that I have prostate cancer. Haven't started a treatment yet but will be soon.

I was scared like you are and I would strongly suggest and it looks like you are to find a GOOD DOCTOR. My GP sent me to a urologist who was great! He spent close to 1.5 hrs with my wife and me talking about the various treatments. He even told me that If I wanted a second opinion with specialist he would set them up and still treat me with the follow up care.

Do you know your Gleason Numbers on the 6 cores they took? From what I understand that the 12 core is more of a standard. I think the Dr. choose the 12 core on me since my father also had prostate cancer so I had a higher chance of having it. Also they just poke the needles in at random so they may or may not find cancer.

I'm stronly leaning towards Robotic surgery and will make up my mind after visiting that Surgeon on June 8th.

Let me know how you are doing.
Larry

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hello everyone.
I went in for the second opinion with the Urologic Specilists of Oklahoma.
The Dr referred me to Dr. Milston who does the Davinci Robotic surgery. I was scheduled for the 24th jun. They had a cancellation for last Monday 15th. I took it and had the robotic surgery on Monday. All went great. Lots of pain but it is getting better.
I really don't like the cath, just part of it. You guys have been great with all the responses.
I have been getting up and walking quite a lot, feels better. Been having lots of gas, I guess it's the gas they blew my belly up with? I like it better coming out than the gas pains after the surgery. I think the worst pain was when they pulled out the JP bag, that hurt like nothing I have felt before.
Pain meds are great..lol
Thanks be to God..

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

They are great. I don't have any complaints. They kept my family well informed. The whole staff was just great. Just wanted to ad this in case anyone in the area was looking.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Glad to hear you are on the road to recovery. I'm waiting for my surgery on August 12th. I'm not sure which part I'm dreading the most the cath or the side effects but hoping for the best on a quick recovery for myself.

Please keep us posted as you continue to recover.
Larry

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

I was real glad to get the surgery moved up. I have 2 friends that had the RP done in Dec 08 and Apr 09. They said to take stool softeners, they were very serious about that, still waiting on the first bm. Walking is a good thing, may venture out of the house tomorrow.
Thanks again Larry. Take care.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

I know how you feel. Mine was scheduled for July 30th originally, when the Dr called and told me of the cancellation on May 22nd, I took it without a second thought. I was glad to have my surgery date sooner, for me, waiting was the hardest part. Hope your recovery goes well, I am now 4 weeks post surgery, ED non-existent .. still dealing with the Depends ... but even that is not a big deal ... about two a day...
Jim

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hi Jim.
The doctor gave me 3 weeks of cialis to take daily to start things working again, blood etc.
Did yours do this?
Take care
Keven

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Man that does feel better.
That has not been fun having that thing in, but oh well whatever it takes.
My first pee on my own was pretty painful, several down the road and they still burn some.
My doc told me today that the cancer took up 15% of my prostate. He said it had not made it to the outer wall, thank God for all the good news and catheter removal.
Still on my first pad the doc gave me. It will get changed next time I go, it does squirt on it's own sometimes.
Went to the drugstore to buy some depends and there is no feeling of shame at all.
My wife said she would get them...lol, I love her. She has been like a nurse to me these last few days.
I could not imagine going through this without someone being there to help.
I am beat for now, think I have overdone it for this day, but it has been a great one.
Take care to all of you.

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

There will be days when you make progress (urinary control)(Ups) and there will be days when you feel that you have fallen back (Downs)
I to have a wonderful wife being the only one here to help.I am using 3-4 depends every 24 hours. The best time that I am dry is when I wake up in the morning. As I have read and learned from postings, patience is necessary.
I have Cialis but, hesitant to take it. Need to work up my courage!

Jim (shubbysr)

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Thanks for the post Jim. The doctor gave me a 3 week supply of cialis that I am to take daily. I will start tomorrow, directions say to take around the same time each day.
Why are you hesitant?
Keven

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

It is such a great feeling to get the cath out... woohoo... I have been taking the cialis as directed by my Dr... 5mg for 6 days, then 20mg on day 7.... did this for two weeks...then only the 20mg once per week... face flushing, headache....he told me I don't seem to need it, so he said I could go to as needed...erections are normal for me, have not had any problems yet with ED... he said he feels the cialis helps in reduction of scar tissue, it keeps the blood flowing to where we need it to...keep us posted.. incontinence seems to be less all the time, down to just pads now, see how long that lasts... will probably still sleep with a depends tho, just for peace of mind for now..
Jim

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Interesting to note that doctor suggested cialis for reduction in scar tissue and increased blood flow. My doctor at John Hopkins sugessted cialis to use as needed for erections. I still am somewhat hesitant to use but, maybe this weekend!!!
Jim (shubbysr)

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

The first night after I took the cialis during the day, I woke at around 3-4am kind of hurting. I had about 1/4 staff going on in my night pad, This happened on Wed night.
It hurt because I just had the catheter taken out on Tuesday.
I was happy for the 1/4 staff but too soon for I am still really tender.
Does anyone know when the burning during peeing will get better.
Some times it's not bad then others it is like the end is on fire?
Thanks,
Keven

lion1
Posts: 240
Joined: May 2007

Watch,

The burning lasted a month or so, but the aching at the tip of the penis lasted about 2 1/2mos. I believe it's from the catheter. Because whenever I have had the cystoscopy or URO my tip was sore for about two days following.

Lion1

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Man that's a long time to have the burning, oh well I will take it over the catheter.
Like others on here have said, diluting the urine with lots of water etc. does help a lot on the burn.
Keven

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Jim,
From what I have read the cialis and other pills are very beneficial to get blood flowing back to the penis. I also read one article that stated if the penis is not getting the regular blood flow then scar tissue can start forming which will make it more difficult down the road for the return of erections. I plan on taking the pills as directed by the Dr after my surgery on Aug 12th.
Larry

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I'm glad that you've completed the operation in a successful manner. ...You had a quick turnaround time which is good, and you are on your way which is great...........I'm still doing active surveillance....generally I'm O.K., but anytime something medically happens that is negative, I am bottered a lot.

By the way, which doctor did you use?

Do you know of any surgeons in Oklahoma City who you would recommend for the robotic?

Ira

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hello Ira.
I don't know anything about the OKC area. I used Dr. Milston here in Tulsa. He is with the Urologic Specialist's of Oklahoma. I have 3 friends who have used him since last Nov, 2008. I was number 362.
From what I have heard about the robotic procedure, it is the best surgery to have. But it is up to the Doctors skills alone that makes it so. The robot only does what the Doctor commands with the joysticks. My most painful incision is the one on the left lower side where the assistant worked through, and it's not that bad now, almost 2 weeks past.
I am not bragging in any way but the day after I had the catheter removed, I wanted to try and see how I could do without a pad. I only wore underwear for most of the day till around bedtime.
All went well. I had a few drops but I have that if I don't shake well in the colder months. I was very excited. I have not done that again since for getting out of the house and doing stuff I wear the pads just in case.
Today I have been only wearing underwear for most of the day since noon and have been doing great. I did put one on to go for a walk with my wife earlier.
I am drinking my first beer since the operation, 3.0 natural light if you call that a beer..lol
I believe that all my success so far is related to the Good Lord and the skill of the surgeons hands.
I would highly recommend Dr. Milston. It would be a drive for you though.
Take care.
Keven

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