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Update from my doctor's visit today

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Posted 9/3/2009 5:41 AM (GMT 0)
Hi David,

I have been offline for a day or so and was sorry to hear of the confirmation of your recurrence. I know you are doing the right thing for you. It sounds like you have doctors that really care about your situation and want the best for you.

If anyone can beat this, you can!

I wish you the very best in your treatment program with the least side-effects and the most effective outcomes.

Prayers and happy thoughts going out to you!

Barry
Posted 9/3/2009 12:23 PM (GMT 0)
Thank you sincerely, Barry
Posted 9/3/2009 1:58 PM (GMT 0)

David:  My prayers are with you and your family.  I see that you have a plan of action.  Hang in there.  I am on my big vacation and dont get to sign in everyday.  Know that I am always thinking of my brothers in PC.

Jeff T

Posted 9/3/2009 2:06 PM (GMT 0)
Jeff, don't know where you are hiding out, but enjoy the time. And thanks for your kindness.

David
Posted 9/4/2009 1:15 AM (GMT 0)

Hi David,

Well, it never rains but it poors for you (have no idea where that came from).  I guess those of us who prayed for you haven't gotten the answer we wished for.  However, we will continue to pray and trust that the Almighty will hear and answer us by making you well.  Whatever treatment you choose will be just fine with all of us, who have had to make some pretty important decisions.

As for me, age 70, haven't lost interest in you know what, but seed implants and Lupron (hormone therapy) have put the kabosh it.  Yet I'm glad to be around to enjoy my wife, grown kids, and grand kids.  Wanted to travel to New England this month, but having some late side effects of seeds, so the trip is probably off - still have some hope that I can make it, though.

I believe that you will have high regard for the female doctor that you will be seeing.  And that she will be able to give you sound advice, and, more importantly, hope for control of your cancer.

I'll continue to pray for you and your family. 

Gene in Md

Posted 9/4/2009 2:29 AM (GMT 0)
Gene, good to hear from you.

Without diverting into a full theological discourse, let's just say that I am a strong believer in providence, and that nothing is by chance. Even with the set backs I have had, in the bigger picture of things, I am content.

Gene, you are 13 years up on me, and I can only hope that I am still interested in "you know what" when I am your age ,lol. With my good looking red headed wife, probably won't be a problem. Hope that situation for you improves one day, but I'm with you, with or without sex, my wife and I would still love each other just the same, she would still be my best friend, hasn't let me down in 35 years.

Definitely not sexist about my doctor's sex, honestly never had a woman doctor before, GP or specialist. Have had plenty of wonderful females nurses of course, and lot's of Nurse Practiioners seem to be women. I had someone at the local level try to discourage me from seeing her, because she was a woman and didn't even have a prostate, so she couldn't know what she is talking about. Duh, there are people that make a science out of stupidity. I know plenty of male doctors that don't know anything about prostates or PC, that should.

I wish you well too brother, you and your family. Thanks for thinking of me.

David in SC
Posted 9/4/2009 4:19 AM (GMT 0)
Hi David, sorry about the rise, and conformation of recurrence, I too look like I am heading in that direction, good idea to get the salvage radiation ASAP, do hope it works for you and side effects are minimal, the radiation is a long process, the actual treatment takes only 15mins, but having it 5 days a week for two or three months is a bit of a drag, I was glad when it was over, hope it blows the bad cells to bits!

I wish you all the best my friend, stay strong.

Mal.
Posted 9/4/2009 12:26 PM (GMT 0)

Hi David.  I'm pretty sure I have said this previously at some point, but my GP is a woman.  She's young, looks like she's about 18 but I'm sure she is closer to 30 and attractive.  When I had my annual physical in December it was only the second time I had seen her.  As we were finishing up I could tell she was not going to do the DRE.  I looked right at her and said I realize you don't know me very well and I don't know you, but I need a good physical.  She looked right back at me and said I know exactly what you are talking about.  So she called in her nurse, and I had a woman to do the DRE and another woman to watch. 

As we finished she did something that I have found most doctors are reluctant to do.  She said "I am not experienced with prostate exams and I'm sure it is nothing, but I feel a little something.  If you know a urologist, I would suggest you see him just so he can rule out any issues."  Her willingness to acknowledge she didn't know certainly set me on the path to getting this disease treated and I have expressed my gratitude to her many times. 

I like my surgeon - a man - and my urologist - a man - but I have absolute confidence in my GP - a woman.  I wouldn't hesitate to see a woman doctor for any issue I was facing.  David

Posted 9/4/2009 1:44 PM (GMT 0)
mal, gee, your post psa numbers would frighten my doctors, based on the way they react to mine. i do not that you are a stage 3, perhaps that is part of the difference in our cases. why isn't your psa going down at all, since you completed radiation, am I missing something here? I hope you all the best too, my pc brother. thanks for your concern, and yes, my salvage radiation will beging as soon as the logistics are arranged

david/cpa - i agree with your accessment with woman doctors. a woman with soft hands might even make a dre easier, lol. this woman rad. oncologist I will be seeing, is a very accomplished doctor, with an exellent repore with her patients, 2 I have actuall talked too. The fact that she is about 40 (not a good judge of age) and very attractive doesn't matter, but will make the visits nicer.

(Political Correctness Disclaimer: The above sentence probably was political incorrect and could be deemed sexist in nature. Too bad - a good looking woman is a good looking woman, so there.)

The fact that your woman GP followed proper protocal and brought in another nurse to witness, showed good taste and responsibility. That has to be done when the doctor/patient relationship is of the opposite sex.

Thanks Guys,

David in SC
Posted 9/4/2009 1:56 PM (GMT 0)
Hi David,
You already have the most experienced guys counseling you. I cannot offer additional advice - only my best wishes. I'm sure you will make the right treatment decision.
Jeff
Posted 9/4/2009 2:08 PM (GMT 0)
Jeff, your opinions mean as much to me as anyone else here. I am doing my best to do due dilligence this time around, and just want to make sure all my ducks are lined up, and all the tees are crossed and i's dotted. Then, like most of us do here, we bit the bullet, we do it, and hope and pray for the best.

You still on vacation?

David in SC

This is bigweekend here in Western SC, its the official start of the fall festivities. We have the Upstate State Fair starting tonight, the Apple Fesitval just over the border in NC starting, and the Dacusfille Farm Day Festival starting, plus a host of others. And instead of being in the 90s like it usually is the first part of Sept, its actually cooler. 59 F this AM, helps being near the mountains.
Posted 9/4/2009 5:07 PM (GMT 0)
David, You give me more credit than I deserve. I'm just a newbie when it comes to this monster.
I'm working half time since I'm 6 weeks past surgery and go through pad and diapers faster than my nephew's one year old twins. I can do that since I'm self employed.

By the way, our Apple festival is 10/3-4. Clearly our climate is colder than yours.

To get my exercise I'm cleaning up the property and getting things ready for the big GFMPH weekend getaway in three weeks. Cutting branches, burning brush, throwing out trash - the things I should have been doing all summer if I didn't have this little "issue". The air was perfect last night: almost a full moon, crystal clear sky, temp in the 50's. It made for a beautiful fire. Very primal.
Posted 9/4/2009 5:29 PM (GMT 0)
Sounds nice. The NC apples are good, though not by northern standards. Just makes me miss my beloved New England. Wife and I are hoping to do a memory lane trip next fall (2010). Been 20 years this December that I moved to SC from NH, don't know where time goes.

Your get together really sounds great, so there is just now way I can pull it off, time or money wise, but will be there in spirt with you and the other brothers. Just makes me miss the northlands more.

Just a carpetbagger lost in the south

David
Posted 9/5/2009 12:21 AM (GMT 0)
Hi David, to answer your question....in my case it is looking like the radiation missed the target so to speak, one of the theories is that the cells escaped the area even before the operation, I guess the docs are just waiting to see if I get a quick PSA doubling time, then if so, on to other treatments. As you can see my PSA has been 0.5 for 2 years.

My Oncologist does not want to see me until Sept 2010, and talked to my Urologist who said the rise to 0.6 is "nothing to worry about" and want's to see me as normal in Jan. 2010.

So that's where I am at David, hope the radiation works real well for you, e-mail me if you want a chat.

All the best to you and your family.

Mal.
Posted 9/5/2009 1:32 AM (GMT 0)
mal, your answers are good, and i am not saying anything is wrong, just baffles me how different doctors can be, even in the same specialty. they are making a big fuss of me because my post psa went to a whopping .16. Your doctor is comfortable with you at .60.

wonder what makes the difference in thinking with the doctors?

your pre-psa was only about a third of mine, so i guess that's still another factor. with me, there's been a velocity problem from age 50 on.

my best to you and your family.

david in sc

yes, let's email sometime
Posted 9/5/2009 5:21 PM (GMT 0)
 

David,

Wishing you all the best I have been following your threads everyday and can only imagine what you are going through.  I know this lousy cancer has many ups and downs and is constant stress.  I will probably be following you into treatment since my PSA also jumped up, even through the doctors say do not worry will redo in 3 months any increase is not a good sign.  Not sure if my waiting for 3 months is a good idea or not part of me wants to forget about it for a few more weeks and then I keep wondering if there is another increase.  Especially since I am a Gleason 8.

My question is how do they know it is a local reacurrance when it was organ contained?  Is there any way they can tell if it is local or spread outside the prostate bed?  If so, then what is the treatment then.  My doctors each have different opinions surgeon thinks if reacurrance would be local.  Pathologist feels since organ contained and no postive margins would not be local so what do you treat do you wait until something shows on a CAT Scan? 

I guess there are no positive answers we just have to stay strong and keep fighting.

Jerry1

Posted 9/5/2009 10:42 PM (GMT 0)
Jerry, my friend, thanks for the post. Just my opinion, and I may get jumped for this, but being a Gleason 8 with a post surgery psa of .1 but at least holding stready for now, not sure I would want to wait 3 months. My doctor compromised with me on a similar subject and we retested at 7 weeks later, then 7 weeks later, and sure enough, it increased both times, but that is me, not you. Not telling you to not listen to your doctor.

As far as reaccurance being local or distant, that is the $20 million dollar question. My uro/surgeon of 30 years experience feels strongly that its acting more local, and I did have one positive margin. One rad. oncologist I already met with, also with about 30 years experience said there was no way to tell at this point, and no scan to detect, and if you waited for it to show up on a scan, it would be way progressed.

My original oncologist, who treated me for 3 prior non-PC cancers, told me back in 2000, that people don't realize that one million cancer cells can easily fit on the pointed end of a pin. And all it takes from our PC is one or two stray cells to start the duplication somewhere else in the body.

So, like so many of the aggervating things about PC, there is no one-way straight answer. If you get treated with radiation like I may be about to, and its not local , even the 2 rad. oncologists I have spoken too so far, said simply, its not going to work or stop the cancer.

But like most men here, you work with what you have in front of you. With your Gleason 8, which by natural is more agressive, it is more of a known quanity. Men with gleason 7 like me, according to all my doctors, are dealing with a very unpredictable situation, because the "4" cells in the mixture are just as agressive as the "4" cells in your combination.

I hope you can hold off as long as you feel safe, but please, remember, its your life and your body, if you don't want to wait that long, then make your wishes known to your doctor, its that plain and simple.

In my own personal case, my GP, my uro/surgeon, and two rad. oncologist are telling me not to wait. In a week or so, I will be meeting with the 3rd one, and I am sure she will tell me not to have any lengthy wait. The jury is out on that at the moment.

Wising you the best, my brother.

David in SC
Posted 9/6/2009 1:40 AM (GMT 0)
Hi David,

Thank you for the nice post in response to mine.  I have to tell you that you are very fortunate to be married to a red head.  When I was 4 yrs old, I was hit by a truck, spent 5 weeks in the hospital (unheard of today) and fell in love with a red head who was one of my nurses.  To this day, I've always been partial to red heads.  My wife is not a red head, but she is one heck of a support for me and her brunette hair - now turning white - makes her all the more special.  She recently spent 2 1/2 hours in a waiting room while I had a hyperbaric oxygen treatment.  I convinced her (without much effort I might add) to let me go to the remaining treatments alone - only 35 of 75 more to go, depending on how I do.

Prayers always coming your way. 

Gene in Md 

Posted 9/6/2009 1:50 AM (GMT 0)
Gene, you sound like you have a lovely wife too. It's amazing what the women in our life will put up with their men, lol.

My wife is a natural redhead, when we got married, she just turned 18, and being 1974 (Hippy days) and me just out of the Navy and back from Nam, her hair was down to about even with her bum, and like it is today, still thick and naturally curly. Then I got blessed with a red headed daughter, who is married and just turned 28. Her mother doesnt have the temper, my daughter, cough, cough, can be one mean pissed off fire ant when she wants to. I pity her husband sometime.

Regardless of hair colour, a good wife is a good wife and a blessing. And mine being a very experienced and caring nurse, just makes my life easier with all my ailments.

My best to you brother.

David in SC
Posted 9/6/2009 3:58 AM (GMT 0)
David & Jerry, read your last 2 posts with interest, for ages I have been wondering why my PSA won't go down, then I reread my post operative pathology "microscopic evidence of capsular penetration" there it is in black and white, I guess they got away before the operation, there is no way of finding where they are, this is why in my case it looks like the radiation is a failure, and I am in the unfortunate position of not knowing where it is going to show up in my body, in the meantime just getting on with my life, I will be around for a long time yet!!

Don't think waiting is a good thing for both of you, I waited for over 12 months, until my PSA rose from 4.2 to 5.8, before I took action, don't do it, act now.

Regards Mal.
Posted 9/6/2009 3:29 PM (GMT 0)
Mal,

I can't speak for Brother Jerry, but for myself, there won't be any long wait for myself. I have worked out most of the issues of moving ahead out of my head, tried to bury the horror of my previous radiation experience behind me, and will be meeting the the 3rd and probably final radiation oncologist a week from tommorow.

I didn't like the idea of major surgery, but I did that last Novemeber. I didn't like needing two corrective surgeries for my bladder neck blockages, but I did them. Sure didn't like being on catheters for over 100 days, but did what I had to do. Same with this radiation ,if this is the answer or at least a way to find out if it is the answer, then so be it. I will bite the bullet, and soon you will be probably be hearing about the start of my salvage radiation treatments.

I don't feel like I am afraid to die, and when my determined time comes, I will go. But on my own, not ready to check out of this world, got things to do, love my family, etc. So from my point of view, fight on I will, even if it means I have to vent and complain and whine like the rest of us. Just not ready to resign myself to the alternative.

Though never having to pay taxes again, or paying my bills, etc, does have a nice ring to it, lol.

I hope there will be a good answer and solution for you too, my brother.

David in SC
Posted 9/7/2009 12:53 AM (GMT 0)

David,

You are INDEED one fortunate brother, a wonderful loving wife and a sweet (most of the time?) young daughter.  My daughter is 37 and my little sweetheart.  I bet it's the same with you.  As for your next go-around, go for it and keep your positive can-do attitude.  Until the ... lady sings, we ain't done yet.  There's something about us as human beings that impels us to move forward no matter what obstacles we face.  I see that very clearly in you and envy you for it.

Gene in Md

Posted 9/7/2009 1:21 AM (GMT 0)
Gene, I would be lying if I said or implied that I felt that way all the time, trust me, I don't. I fight my own personal demons and fears every day. I am a big dreamer, but all the wishing in the world won't change my current reality, so the pragmatic side of me uses logic and sense to keep fighting and moving forward.

My daughter was always the daddy's girl growing up, but stubborn as a mule, and the sting of a wasp. She's a fighter in every sense of the word. I will never forget what I told her boy friend (now her husband) the first time she brought him home. Me and him were sitting out front on some old wooden chairs, and I looked at him and asked, "Do you know what the average length of time one of my daughter's boyfriends is?" He looked puzzled and scared and said, "No." I said "about 4-5 days tops, so you are doing pretty good at the 3 week mark." He looked relieved. They will be having their 5th anniversery in November.

My best to you.

David in SC
Posted 9/7/2009 5:03 AM (GMT 0)
David and Jerry,
There is a new technology that is showing a lot of promise in determining if a reoccurrance is local. It's Functional Multi-Modality MR Imaging. It combines a high resolution MRI, DCE (dynamic contrast enhanced MR), MRIS, and DWI (diffusion weighted MRI) into one picture that can identify small tumors in reoccurrances. It may take some research to find out who is doing this, but I would start at UCLA or Dr Barantsz at St Radboud Medical Center In Holland.
David, by the way I had a female GP that was by far the best doctor I ever had. It was the only time that I actually looked forward to getting a DRE.
JT
Posted 9/7/2009 12:19 PM (GMT 0)
Good info there, John, you seem to be on top of that material. Yeah, aside from having a good reputation and being well educated, my new rad. oncologist happens to be extremely good looking. So if she wants to do another dre just to be sure, no objections. lol.

David in SC
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