Got New Appointment

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/4/2009 12:37 PM (GMT -6)   
I have a firm appointment now with  the new Radiation Oncologist.  I will meet with her on September 14th at 1230.  One minute they are pushing urgency, then they slow down the getting the appt, hurry up and wait.  Trust me, not the one rushing here.
 
She will be the 3rd radiation oncologist I will have met with since July.  Hoping 3rd time is the charm, as I am running out of available ones in my area.
 
I will go with a clean mental slate, a list of questions of course, and give her the freedom to give me her accessment and plan for me.  I know for a fact that my uro/surgeon has already consulted twice with her at length about my case  and some of the touchy issues that I have faced.
 
Knowing this facility, they will probably want to start treatments as early as the first week of October.
 
David in SC

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 9/4/2009 4:13 PM (GMT -6)   
Good luck David. I hope all goes well for you. I know waiting is always difficult.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/4/2009 5:17 PM (GMT -6)   
Thank you Ed, I am about pro active as I can be at this point. Don't like being boxed in, but my post surgery psa isn't going to disapear on its own, and I sure don't want to gamble away my window of opportunity.

David in SC

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 9/4/2009 9:56 PM (GMT -6)   
Good Luck to you David. I think you are being wise. Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09
PSA .9 8/29/09
waiting for new PSA 7/09


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/4/2009 10:12 PM (GMT -6)   
Diane,

Thank you, hope you are Pete are doing well. GIve him my very best.

David in SC

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/4/2009 11:13 PM (GMT -6)   
Hi David,

Although not to the extent of you and your wife, I am watching and waiting with great interest regarding your next steps.

I am so pleased that you continue to attack this disease head-on.

Thank you for sharing your decisions with us.

Again, I wish you the very best, David.

Best regards,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 9/5/2009 1:23 AM (GMT -6)   
David: I am also happy that you have another appointment. Please keep us posted.

Your friend
Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/5/2009 8:54 AM (GMT -6)   
Barry, thanks for the confidence builder. Not sure if I am smart or stubborn, perhaps persistent. This goes way back in time, I started fighting for myself when I was still 19 coming back on a hospital plane from the Viet Nam war. While at the Navy Hospitals in Bethesda, MD, Philly, and Boston, I saw ward after ward of youngs guys like me, but so worse off than what ailed me. Talking about missing one or more or even all limbs. It was sad and such a wasted of our best resources, the youth. By my late 20's, was faced with my first major medical crisis, when I developed a near fatal case of pancreati***. Have no idea where that one came from, didn't even drink back then either. Had emergency op. to get rid of gall bladder, but damage was done to liver and surround goodies. Was in ICU for 10 days. My poor wife was only 25 at the time, with a four year old and my 2 week old daughter in her arms. My only proof is the 8 inch very ugly and ragged scar from the operations. And since then, its been one thing or the other, including my 3 previous cancers, radiation, and of course, my PC journey. Point, not sympathy, but I may be tougher than I think or feel. Just a tough old bird, as they say here.


Thanks, Jeff, means a lot. Yes, just having the appt., a week from this Monday, means a positive step forward instead of just idling around.
I am more a person of action by nature.

David in SC

Post Edited (Purgatory) : 9/6/2009 6:21:32 AM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/5/2009 11:30 PM (GMT -6)   
Hi David,

I am humbled regarding all you have endured. Knowing that, you give me even more courage to fight whatever is ahead.

Thank you for sharing with us.

God bless you.

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/6/2009 7:20 AM (GMT -6)   
Barry, you have had your own fight. From looking at your stats, they got your prostate out while the psa and gleason was fairly on the low side, and you have 2 years now plus of low post psa. i dont know how you are doing in your other areas, but you are looking good on the pc front.

I use to be a strong beliver in another axiom, "you can make things happen for yourself, or you can let things happen". That's not always true, I do not f eel I did anything to make PC happen to me. There are men here in perfect physical shape that get it, there are men like me that never smoke or drink that get it, men that eat perfect diets or are vegetarians or even vegans.

Sometimes when I get depressed about things, I will even go as far as to think I am being punished by God for something big. But I know that's not rational, and when I examine myself, I am forced to remember I am not some evil person, just a common every day sinner.

I think such feelings are very normal when one is dealing with something that hangs over your head like cancer. Since the day my GP first sent me to the uro for the first time, that would be July 2007, never been a day where I can get this PC entirely out of my head, not even when I was on vacation this April.

Not complaining or venting, my friend, just thinking. Sometimes I wish I could click off the deep thinking part of my brain. I say this jokingly mostly, but sometimes I envy the life of a simpleton. There would have to be bliss in not knowing whats going on in the world and with myself, lol.

My best to you.

David in SC

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/6/2009 9:18 AM (GMT -6)   
David you are a strong, positive, supportive and encouraging force to be reckoned with. And I speak with the voice of personal experience.

My wife is at present a cancer survivor. I use the term at present because she has Multiple Myeloma, which is a non-curable cancer. You can only try to beat it down to a manageable level and live life to it's fullest. Since November 2005 she has endured chemo (the first drug caused a stroke after 7 days), radiation and stem cell transplants. We have always known that the cancer would not kill her, but rather the complications and failures of her body. She has dealt with 4 hospitalizations in the last 3 years from pneumonia.

The latest began on June 24th. I got the call from Dr. confirming PCa on the 26th. She was moved to ICU and place on ventilator June 28th because of Acute Respiratory Distress. She was in a drug induced comma for the next four weeks and there was many days in the middle where the Dr.s would tell me during rounds that she was 50/50 to make it to the next day.

When my Dr. told me about the PCa, I told him I don't have time to worry about cancer, I need all of my energy for my wife. I just told him "tell me what you want me to do".

I spent my time away from the hospital beginning my search for information and alternatives. In a way PCa was a help during this time. It allowed me to think about something else. It made me feel as though there was something I could control; I could figure out what I wanted to do and how I wanted to fight my battles. There was nothing I could do for my wife but continue to pray.

That is when I came to find this forum. I began my search and many times encountered your responses and replies.

When she was allowed to wake up and realized where she was and what she had been though, her response was the same as it has been from the beginning; "God is not done with me yet, he has a plan for me and I am not finished". I am a man of faith, but nowhere near as strong as my wife.

We have seen time after time evidence of the lives she has touched and the good she has done. I have even seen a few since my diagnosis where I have touched someones life in a positive way.

David I tell you all of this for a reason; God is not done with you yet. YOU ARE A STRONG, ENCOURAGING, SUPPORTIVE INDIVIDUAL. Your posts are insightful, uplifting and extremely informative. You have no way of knowing how many lives you have touched by sharing the details of your battles. You hold nothing back and have no agenda with your posts other than to reach out to folks like me.

There are no doubt hundreds of men who have read your words, were touched by them and encouraged by them. They just haven't taken the time to tell you for whatever reason.

Well I am taking them time. My surgery is schedule for the 17th. I only hope that my postings in the future will be of value as yours and others of the forum have been to me.

Know that you and your family are in the prayers of my wife and I.

Bless you and yours,

Sonny
60 years old
PSA November 2007 3.0
PSA May 2009 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

Surgery set for September 2009 with Dr. Mani Menon at the Henry Ford Medical Center in Detroit.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/6/2009 10:22 AM (GMT -6)   
Sonny, my heart goes out to you, your wife, and your family. My mother-in-law passed away from the exact same thing you wife is suffering from, many years ago, my wife was like 30 when her mother died. Her mother put up a good fight for about 2 years.

I assure you, God is already using your wife and is continuing to use her, as her courage, her will to fight, her will to survive, is a living testimony in itself, something you can be very, very proud of.

As far as your PC goes, I think you are making the right treatment choice and you are going to a very good hospital to have it done. With your gleason 7, and that one noted 90% core, I would want that prostate out too. Some would disagree. I happen to agree, because the best biopsy is only an estimate. In the course of time I have been here at HW, I have seen more men get upgraded after surgery, then downgraded, and of course, many stay the same. So its another calculated gamble, is the cancer worse than expected, the same, or better?

Is your surgery going to be open or robotic, I wasn't able to tell from your post?

Let me know the date of your surgery, so that I can remember you.

You have a lot on your plate, but it sounds like you have your mental, emotional, and even spiritual things in the right priority. They will help you with all the lies ahead for you and your dear wife.

May the Lord bless you, and keep you still.

David in SC

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/6/2009 11:01 AM (GMT -6)   
David,

Thank you for your kind words. My surgery is scheduled for the 17th of this month. It will be da Vinci, done by Dr. Mani Menon at the Vattikuti Urology Institute of the Henry Ford Medical Center.

I was lead to Dr. Menon through this and other forums. Time and again guys mentioned the names of their Dr.s and as I researched them I found many had studied under, mentored with or collaborated with Dr. Menon. I found articles on the net that mentioned that he was on the initial advisory board that helped developed procedures for using the da Vinci for prostate surgery.

I know that there are many great Dr.s in this arena, but my thought process was if I can go to the teacher why go to the student. There were other signs that this was right for me. I live in Orlando yet he and Henry Ford are in-network and plan for my insurance. My wife's Dr. at MD Anderson Houston offered to put me in touch with one of their top people and had me send my file and test results out there. When no one responded in 3 weeks I felt that this was a sign. In fact I took a 2 day trip to Detroit to meet with Dr. Menon and his staff and it was while I was there that I finally got a call from MDA. I felt really good in telling them never mind, I have found a quality professional that was more responsive. I am a big believer in, "When God Talks- You Gotta Listen".

I feel really good about my decision and have great confidence in the outcome. I was further encouraged by the fact that he and his staff have developed enhancements to nerve sparing surgery and continence control.

Lastly, one of the most often talked about issues following surgery by guys on the forums is the catheter. Dr. Menon does not use the Foley Catheter. They quit a few years ago after doing many follow ups with patients that expressed the discomfort and issues with it. They instituted use of the Supra-Pubic Catheter.

No tube out the penis. A Foley is used only the one day of surgery and the over night in the hospital. Before being released the next day it is removed and replaced with a tube from the lower abdomen to the collection bag. It is removed exactly one week from the surgery.

Every one I have talked to that has experienced this had nothing but great things to say. No discomfort, no irritation, no nothing. I just had a conversation with the Cancer Care Nurse Line from my insurance company and she was very complimentary of this process. She has a lot of dealings with PC guys and said that the Foley was always at the fore front of the conversations.

All in all I am encouraged and confident. My goal is to GIT R DONE and get back home so that I can continue to be the caregiver that my wife needs.

I guess I have a different way of looking at PC than most guys and it is because of the experience of dealing with my wife's cancer. Her's can't be cured and is much more debilitating. PC has a better than even chance of being removed with the surgery and if not has more alternatives of dealing with it.

Always trying to put the positive spin on things.

Thanks for the prayers and blessings,

Sonny
60 years old
PSA November 2007 3.0
PSA May 2009 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

Surgery set for September 2009 with Dr. Mani Menon at the Henry Ford Medical Center in Detroit.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/6/2009 11:47 AM (GMT -6)   
Sonny ,sounds like a real solid game plan there. Sounds real good and well thought out. You need to continue to be strong for your wife, so I think you are going about it in the right way. However, you are still going through a major surgery yourself, don't underestimate that fact, even though you are doing robotic vs. the open I had, its still major. You will have to pace yourself properly after surgery, so that you don't have set backs. Listen to your doctor's advice on recovery, and from the experiences you ready here.

I am familiar with the other type of catheter, don't know why I was never offered one with all the ordeal I have been through. If I ever thought I was going to be long term with one again, I might insist on the same for myself.

Sounds like you got all your ducks lined up in a row. Keep doing what you are doing, the rest of it is out of your hands.

Be thinking of you,

David in SC

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/10/2009 11:33 PM (GMT -6)   
Hi David,

Sorry I haven't got back to you in a few days, I've been working 12-16 hour days for a bit and have not been on-line.

Thank you for your kind words.

I have a special PSA scheduled next Tuesday (9/15) to ensure that the PSA blip I had in June after almost two years of real zeros was just an anomaly. I'm pretty hopeful, since the blip, though readable, was still less than 0.1.

I hope you're doing well.

Barry (a.k.a. Idaho)
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/11/2009 8:30 AM (GMT -6)   
Barry, then we will both have news to share next week.

For you, I hope it was just the proverbial "fly on the radar screen", and that your PSA returns to its normal range, if not, like you said, if it is under .10, you are still in the Zero Club, and the moderators won't make you give back all the neat gifts and premiums you got when you joined. I only got to stay in the club for 3 monts (sobs), and killed me to give back the ring with the whistle in it.

For me, still meeting the 3rd and hopefully final radiation oncologist on Monday. They moved my appt. up from 330 pm to 1000 am, which I like better. I am well armed with my mental and physical list of questions. Wish it were Monday.

When I am through there, off to a 1230 job interview with a good firm just 3 blocks from my house! I could even walk to work.

So let's both have some good news next week.

Good to hear from you.

David in SC (where our Gov. still doesn't have the good sense, manners, or decenty to resign, and of course, it was an idiot from my
own state that called the President a liar during his Health Care speech, but then this is the same state that started the Civil War, lol)
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out after 38 days


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/11/2009 8:11 PM (GMT -6)   
Hi David,

Boy, that job opportunity sounds good. I hope it all works out for you.

I look forward to hearing how things go next week.

All the best,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/11/2009 8:22 PM (GMT -6)   
Same here Barry, wishing all the best for you.

David
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out after 38 days

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 1:27 PM (GMT -6)
There are a total of 3,004,722 posts in 329,165 threads.
View Active Threads


Who's Online
This forum has 161748 registered members. Please welcome our newest member, Adil.
297 Guest(s), 14 Registered Member(s) are currently online.  Details
Michelejc, ezhoe, dbrookenz, Mind body spirit, Startech, clocknut, JoHnGaMeR90, Vdang2k, FrackMe, 61Impala, Cyclone-ISU, dbell, RunJerRun, k07