One of my apprehension about HT

New Topic Post Reply Printable Version
59 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/23/2010 6:46 PM (GMT -6)   
Reading the post below that Zufus posted about a brother of the PC that perished last year, actually brougth to the surface one of my deep fears about the HT path.  And of course, any regular reader here knows that I do not have any first hand knowledge, as in using HT, to base my opinions upon.
 
The emotional roller coaster scares me more than any of the rest of it.  Hot flashes would be no fun, I hate the heat, but I have watched my lovely bride deal with them for years as she has been and still going  through menopause.  And the fatigue part, I know this part first hand from my past radiation treatments, as well as my current ones.  As far as physical pain goes, what can I say, being on my 21st catheter, and approaching the 11 month mark with an SP tube continously rubbing up against the inside of a heavily radiation damaged bladder and bladder neck.
 
I would never want to be on something that would make me "not good" to live around or with.  I wouldn't want to be on something that would make me lash out at my wife or other family members, I could never handle that or forgive myself, even if it were the direct result of the HT drugs.
 
I love my family too much to want to hurt them in any way, I would rather be dead then to do that.  Yes, that's a drastic remark, but I mean it from the heart.  I don't like being on any drugs or meds that take away any of my natural control of my thoughts or senses, one reason why I am so picky about meds, and have dropped many meds over the years that made me feel that way.
 
I also have a not rational fear of being poisoned, one reason why I have always had a hard time with RT and SRT, because in fact you are subjecting your body to radiation poisoning.  Many of the HT drugs, from what I have heard here, and researched on my own, can be harsh, and most men are subject to the expected side effects.
 
It's not a sexual thing in my mind related to the use of HT.  I was on Lexapro for several years, five years back, and it didnt take away the ability to have sex, it just basically took away any natural interest in sex.  Since I have had PC, and with the surgery, radiation, and a total of 6 corrective surgeries and still more to come, I physically can have sex anytime I want, at least from a mechanical point of view, but rarely do because of all the collateral pain I have due to complications and the constant catheters.  So, while it's not ED in a medical sense, the practical side of it has the same effect.
 
I just turned 58, and if its proven in a few months and a couple of more PSA readings that the SRT failed, just don't know if I could handle the next course of action:  HT.  It bothers me that it just buys time, and is masking cancer that is still in the body.  Definitely a hang up of mine, though not limited to just me here at HW.  If HT turned me into some kind of insensitive, uncaring emotional monster, then I would want no part of it.  Just kind of hard to get this out in a way that might make vague sense to anyone else on this path or at this potential juncture.
 
I do realize that quantity of live and quality of life, need to be balanced, and would be very personal from one man to the next.
 
I am not saying this is a fact, but if ultimately, all my operations and SRT  do fail to stop the cancer,  then I will feel like I might have better off had I never known about it, and could have used whatever time I had left in the world doing all I could to enjoy what we call life.
 
Even my upcoming operation, has me concerned, because I am exchanging one set of problems for another, but hopefully at least a choice that might take me out of the every day in pain zone.  And how do I know, that I won't have severe scarring issues after this operation?  I asked my surgeon that, and he said of course, there wouldn't be any guaranty.
 
I end by saying, I know HT has extended many a PC guy's life, and for thats that are on it, or about to be on it, there's is nothing wrong with their decision or choice.  I have tried hard for months to get my mind in a mode that could make me acceept HT if its proven that i need it.
 
David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 8/23/2010 6:58 PM (GMT -6)   
David, from here, it might look REAL BAD to you..But after being on it for 2 years, it might be a piece of cake for you..You just don't know..

Virtually all the guys who opted for radiation treatment as their Primary Treatment go on Lupron for two years. For them, it's a minor issue, just part of the radiation treatment...You see little discussion about it. No big deal..So I wouldn't be getting into a big sweat over it..

Forget about the HT for now, you are getting ahead of yourself. Get the plumbing fixed first, then play the next hands as they are dealt..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3994
   Posted 8/23/2010 7:06 PM (GMT -6)   
Fairwind -- i don't thinks it's fair to say that 2-years of HT is prescribed to patients who receive radiation as a primary course of treatment.  it varies.  i will be on lupron for nine months.  many of the guys at the radiation clinic i go to have received no HT.
 
F8
age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT

Post Edited (F8) : 8/23/2010 6:27:13 PM (GMT-6)


F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3994
   Posted 8/23/2010 7:10 PM (GMT -6)   

David -- i feel for you man.  after what you've been through lupron should be a piece of cake.  if it really gets to you you can stop treatment cool .

F8


age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/23/2010 7:16 PM (GMT -6)   
Fairwind, some men do have HT with RT, or HT with Seeding, etc. Definitely not cut and dry. When I had my first recurrance after surgery, I met with 3 different radiation oncologist. Two, said definitely not to do HT with the SRT, and the one guy that said to combine HT with the SRT, kind of back pedaled on me, by saying that he couldnt prove that it would help, and he couldnt prove that I needed it. Plenty of men have had RT or SRT without any HT in the mix. Even being here at HW, seems like most men have issues with the HT portion.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Post Edited (Purgatory) : 8/23/2010 6:46:13 PM (GMT-6)


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 8/23/2010 7:36 PM (GMT -6)   
In Walsh's book, he states that HT has shown to improve the effectiveness of radiation therapy..

When I was beginning my investigations, a hot shot R-doc, someone who had treated a family member and I trusted, recommended I start HT immediately and then undergo an 8 or 9 week IGRT treatment program 81 Gy on his brand new Varian machine...He said "in the past, we would continue the HT for 3 years, but I think now, two years is enough.."

This is what I based my post on...So, apparently, Gleason score and PSA number has a lot to do as to whether they recommend HT or not...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3994
   Posted 8/23/2010 7:46 PM (GMT -6)   

Fairwind -- i think the severity of the case is the determining factor for duration of HT.  originally i was told told i'd be on six months of lupron but because of the way the schedule went down with my treatments my uro wanted one more shot, which i get in three weeks.  i get my last blast of IGRT this friday.

i asked one of my radiation doctors if i should be on lupron longer but he said in my case the negatives would outweigh the positives.

F8


age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT

Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/23/2010 9:14 PM (GMT -6)   
David,

All I can relate to you are the personal experiences that are as different as people are. I am on Lupron after SRT for a year now. I have no libido and a complete ED as well as hot flushes. No other side effects. In the begining I felt tired, but I don't anymore.

As far as emotional side, I think I am a more tolerant and pleasant person now that I am less driven by testosteron. I don't feel overly emotional, but my moods are a little softer. It is harder for me to get angry or feel competative.

I am enjoying life and small unpleasant side effects are nothing compared to being together with my wife, seeing my grandson turn one, sailing with friends or even putting in an honest day of work.

Of course every one reacts differently, but don't dismiss it before you try it. Also, there are different HT drugs that might have different side effects.

Hang in there, take care of your immediate issues, then see what works for you. This fight is a fight for time. If you can buy several years, who knows what other treatments may become available.
Father died from poorly differentiated PCa @ 78 - normal PSA and DRE
5 biopsies over 4 years negative while PSA going from 3.8 to 28
Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8
Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere + Avastin)
PSA prior to treatment 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60
RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins
PSA undetectable for 8 months, then 2/6/2009 0.10, 4/26/2009 0.17, 5/22/2009 0.20, 6/11/2009 0.27
ADT (ongoing, duration TBD): Lupron started 6/22/2009
Salvage IMRT to prostate bed and pelvis - 72gy over 40 treatments finished 10/21/2009
PSA 6/25/2009 0.1, T=516, 7/23/2009 <0.05, T<10, 10/21/2009 <0.05, T<10

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 8/23/2010 9:58 PM (GMT -6)   
Hi David,

My brother was diagnosed with PC several months ago. His psa was over 10 and the cancer had spread to one of his lymph nodes.

His Uro told him it would be pointless to perform surgery on him and referred him to radiation treatments. In the mean time he was put on HT therapy followed by the radiation treatments.

At this point, about three months after completion of his radiation treatments his psa is undetectable, but he will continue HT for the foreseeable future.

He holds a full time job as an excavation contractor and has suffered essentially no side effects from the RT or the HT.

I hope this information will give you some positive indication that HT is not necessarily going to reduce your quality of life.

Best regards,
Bob
Age 71, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Seven PSA tests undetectable, latest Aug 2, 2010
Pad free beginning Mar. 18, 2010!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/23/2010 10:25 PM (GMT -6)   
David,

How does the orchiectomy (sp ?) stack up in your thinking along these lines. No drugs, and no testosterone .

I don't disagree with your posioning thoughts or even the fear of some of the HT drugs, but I am thinking more and more particularly after the recent poster talkied about dropping PSA to almost 0 with the orchiectomy.

Not that the thought is particlularly pleasant to a red blooded male, but certainly there are drigs like there are for menopause symptoms.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/23/2010 10:37 PM (GMT -6)   
Hi David,

I don't know if this helps you, but I talked to a friend on Sunday that has been on HT for quite awhile and he is tolerating it well.

He said at first that there was some fatigue, but he is much better now.

He also said that sometimes he complains about the hot flashes, but his women friends don't have any sympathy for him at all! tongue

Hang in there buddy,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
3/'10 <0.04; Latest PSA 6/'10 <0.01

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/24/2010 9:43 AM (GMT -6)   
David, here's my take, harsh as it may seem. You need to consider how selfish the idea of better dead than irritable really sounds. I say this as one who has had a lot more online contact with you than most and who I consider a friend. You seem to be completely making your decision on your own, and not considering and consulting with your wife and other family members. They will guaranteed have a whole different idea of your plan of no HT than you are taking. The old 'not for me, but for them' still follows true, but not in the way you are thinking it just now, rather reverse it and look at it from your family's point of view. I bet the current plan of no HT will seem very much a ill-considered, selfish and despairing idea to them. Sorry, friend, but that's my take on it.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3994
   Posted 8/24/2010 9:54 AM (GMT -6)   

Geebra -- have you gained weight?

thanx,

F8


age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 10:18 AM (GMT -6)   
James - I totally disagree with your opinion, either I am not correctly expressing my view, or you completely mis-read my intent, either version is possible under the circumstances. I think that living for years in a miserable state of mind, while running up endless medical expenses, benefits no one. That is what the whole quantity vs quality of life issue hinges upon. I have had serious set backs and side effects with every step of my PC journey so far, why would I not think that HT wouldn't be any different? And I don't want to be castrated or chemically castrated just to say I lived longer. That doesnt make any sense to me, aren't I entitled to some kind of dignigty as a man?

It was bad enough losing my job/carreer, and then a month later getting a PC dx, and now not being medically fit or physically able to work, I already feel like I have nothing left of value. It's like I feel my life has no value or purpose anymore. I was not and am not in any position to "retire" early, all this PC journey has done for me is to run up a lot of bills, major loss of income (mine), and leave me staring at the walls for endless hours, and if I am lucky, getting 4-6 hours of sleep aday. Most of my former business "friends" and colleges, have written me off, they don't call, dont want to go to lunch anymore - perhaps they are afraid PC is contangious, or they simply don't want to be around someone in my condition. I simply don't know.


Guess you didnt get it, sorry
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 8/24/2010 10:33 AM (GMT -6)   

Let me join the pity party...

Purgatory said...
If HT turned me into some kind of insensitive, uncaring emotional monster, then I would want no part of it.
 
David, there are lots of guys here who are living highly productive lives on HT.  A good use of this forum might be to ask them directly about your fear...ask them, "How many of you turned into an insensitive, uncaring emotional monster?"
 
One day at a time...


 

----------------------------------------

added later as an edit...

Most medical professionals treating cancer patients strongly encourage a “one day at a time” attitude.  A negative psychological and psychosocial state of a person (often self-induced stress about unfavorable future possibilities) is known to have a direct unfavorable impact on their immune system; and in turn the immune system is known to promote healing and help fight cancer…two things you would benefit from if you had it working in your favor. 

It never hurts, and usually helps, to stack the odds in your favor…

 

 

Post Edited (Casey59) : 8/24/2010 10:25:38 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 10:48 AM (GMT -6)   
(Never mind, I decided not to get lured into your remark, Casey.  So I deleted my original reply here.)
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Post Edited (Purgatory) : 8/24/2010 10:23:54 AM (GMT-6)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 8/24/2010 11:05 AM (GMT -6)   
David,
Please re-read your post and count how often you use the word " I. " James makes a good point, but you have been thu a lot and I would not judge you on any choice that you were to make. Peace to you Brother.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 11:33 AM (GMT -6)   
Michael, I understand your point and intention, but sometimes its kind of hard to write something at the most personal level without the multiple use of the "I" word. In all my time at HW, I have always tried to be most sensitive to the hurts, pains, fears, and anxieties of our brothers. I would never belittle or judge, or reduce someone who is "down" to the other poster above as a "pity party". If that is what someone thinks, then they are either very insensitive or uncaring. I know you did not say that, your post is fine.

Do I think my journey is the worse? Absolutely not. There are so many in much more dire condition. I think the big difference, is that mine has been filled with more day to day pain and agaony then most. There hasn't been a single day in the past 11 months that I wasn't fighting constant pain to some degree or the other. Pain weakens one's emotional defenses too, and makes one fearful about things. Pain meds only do so much to help, and you don't want to be in a blurred out drug induced cloud all the time, that I won't do.

I am a big believer in the "walk a mile in a brother's shoes" before judging them kind of person.

The real subject was about my fears (and I am not alone here, I could name at least 5-6 regulars here at HW that share the same fears) about the possibility of going on HT. None of us used any HT in our primary or secondary treatments, and if/when they fail for this group of men, myself included, then HT is really the only thing left on the table, and its not curative.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 11:41 AM (GMT -6)   
P.S> To JamesC

Actually, over the months, my wife and I have spent a lot of time talking about HT and what might happen if the SRT fails. As a nurse working among the terminally ill and long term infirmed, she has a whole different level of understanding about the great quality of life debate. She at least understands my fears and apprehension of going down the HT route. She loses patients on a weekly basis, sometimes the ones that die were in better shape then those that keep lingering on. Its still up to each person, to decide when enough is enough, or if further treatments are pointless.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 8/24/2010 11:56 AM (GMT -6)   

Purg,

You and I have disagreed about much - and still disagree about much - but I would have been proud to write this sentence:

"Its still up to each person to decide when enough is enough, or if further treatments are pointless."

That is elegantly expressed and absolutely correct.  I'll decide for myself; others should decide for themselves; but you and only you should decide for yourself.

Zen9

 


Post Edited (Zen9) : 8/24/2010 11:37:11 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 12:17 PM (GMT -6)   
Zen, thank you, I will take that as a compliment. We can't all be right, and we can't all be wrong. But what you quoted from me, comes from the bottom of my heart, and not a statement of fear. I mean it. Ultimately, my life belongs to me, and me alone.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 8/24/2010 12:18 PM (GMT -6)   
David,

I certainly wouldn't think of weighing in on the HT issue, but I do have to respond to your sentence about your life having no value or purpose. You are an inspiration to lots of people here and are very helpful to the newbies who will unfortunately continue to pop up. I know that you've had an unbearable (at least in my mind) path, but if nothing else you're a big help to the brothers and sisters on this forum-and believe me, that is worth a lot. So, you're wrong-your life does have a purpose.

Kind regards,

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%

Gleason 6

DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins
Negative lymph nodes
No seminal vesicle invasion
No angiolymphaic invasion
perineural invasion present
Both nerve bundles spared

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 8/24/2010 12:39 PM (GMT -6)   
Hey David,

Renee said exactly what I was wanting to express,
"You are an inspiration to lots of people here and are very helpful to the newbies who will unfortunately continue to pop up. I know that you've had an unbearable (at least in my mind) path, but if nothing else you're a big help to the brothers and sisters on this forum-and believe me, that is worth a lot."
That was very well said!!
Bob, located in Southern Colorado

Age 73 Retired Railroader.
Dx Jan 2010, Volume 51.345
Gleason 3+4=7, second opinion 4+3=7 (Don't know which to believe)
PSA
2.6 4/96.......... 3.7 4/07
1.9 5/97.......... 3.2 1/08
2.3 4/98.......... 6.1 4/09
2.2 10/99......... 5.3 5/09
2.4 8/00......... 5.3 8/09
2.3 6/01......... 6.9 10/09
2.9 2/03......... 7.3 12/09
3.6 4/04......... 6.1 1/10
3.0 5/05......... 5.0 3/10
4.7 4/06......... 0.7 5/10 (Lupron/Bicalutamide)
Volume study at CPCC (Westmont, IL) Feb 15, 2010 = 55.7cc
On Feb 15, 2010 put on 90 days of Bicalutamide
Got LHRH Lupron shot on Feb 29,2010
Another Volume study May 24, 2010 = in mid-40cc
BRACHYTHERAPY received May 26, 2010
Received 80 I-125 (Iodine seeds)
Activity per seed (mCi) 0.373
Total activity implanted (mCi)29.80
Measured exposure @ 3 feet (mR/hr) 0.06
Received the Brachytherapy at the Chicago Prostate Cancer Center from Dr. Brian Moran
Walked in the facilty and just a few hours later walked right out.
No after effects other than just a little sore from the needle sticks but NOT serious
enough to take ANY meds for pain.
PSA to be taken in three months (Aug 2010).

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/24/2010 12:39 PM (GMT -6)   
Renee, I find it easier to try to help others, then to help myself. While I may feel helpful here, in my day to day existence, life is bleek most of the time, as I have too many physical limitations right now. This is what is driving me to having another major surgery, in the hopes that when I get well again, I will be able to do more.

I had a doctor a few years ago, that said that I was really harsh on myself, that I put myself to standards that I wouldn't put on anyone else in my life, and that in escence, I punsished myself harder for failure than I would another person. Perhaps she was right. I do expect more of me, I have basicially gone downhill physically and mentally so much in my nearly 2 year battle so far, mostly due to the endless setback and pain. I never counted on any of that happening. When I first got PC, I was strong, and tough, and was just going to have my operation, recover, and get on with my life. I had no idea what lie ahead for me. My kids (adult age) are use to seeing me strong, not this frail guy that now can't even mow his own yard, or take the recyclables down to the street without pain. After nearly 2 years, they still have to see me each time lugging my catheter bag about the room. I would think anyone could understand how all that would break down a person's spirit.

Thanks for your words though, appreciate them.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 8/24/2010 1:06 PM (GMT -6)   
David:
 
Your post is one of the most brilliant I've read here on HW. At least for me, you have expressed my fears 100%. Actually, it is only 99%. You forgot about osteoperosis. You and I also share that gnawing fear associated with a slowly increasing PSA. Right now, my fear concerns the side effects of SRT (will I be able to work and function). But I have also thought deeply about HT. Basically, it seems like a rape of our essence, It's d*** scarey.
 
There's not much else I can add. But your post was right on target.
 
I guess the one positive is that folks seem to have all degrees of side effects, from severe to a mere annoyance. I guess one can hope that his side effects turn out to be minimal.
 
Here, too, if it comes to this, you (and I) need a really top-notch medical oncologist who specializes in PC. We need someone who can help us deal with the side effects.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.
New Topic Post Reply Printable Version
59 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Sunday, September 23, 2018 7:47 AM (GMT -6)
There are a total of 3,005,819 posts in 329,266 threads.
View Active Threads


Who's Online
This forum has 161807 registered members. Please welcome our newest member, Wimp7755.
267 Guest(s), 7 Registered Member(s) are currently online.  Details
Froggy88, cashlessclay, auzzie, Anitas, zack36, Darla, fighter87