New member ... struggling with boundaries around my father's treatment and lack of communication.

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Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 12:09 AM (GMT -6)   
Hi everyone -

I've been 'lurking' here for a week or so now, and I really appreciate all the valuable information and support that's being provided here ... it's been very helpful for me.

So, this is my dad's story. And, in it, you'll also hear the story of my frustrations in trying to stay in the loop about his disease and be a supportive son.

My dad is 74 years old, and is currently diagnosed with HRPCa with bone mets. The first indications that anything was a problem was in early 2007, when my dad developed a problem with some swelling in his leg. As this continued, he dropped out of contact for a couple of months. I came to learn he had gone to the Mayo Clinic, where he was diagnosed with metastatic prostate cancer. At the time, it had spread to two lymph nodes in his pelvic area. I did not find out what was going on until approximately a week after he had returned from the Mayo. I was very upset about the fact that he'd kept me out of the loop, but we had a good conversation about it, and I felt that conversation led to some positive changes and increased openness in our relationship. He made the decision to spend the summer in Rochester to get treatment at the Mayo, and I drove out there with him, which was a fun trip for both of us. He returned to his home in southern CA in August of 2007.

He started Lupron treatment in March of 2007, and responded very well to it, with his PSA score dropping below 1 and no significant side effects from the Lupron. For some time, things appeared stable. My father had told me initially that the Lupron treatment usually works for 'several years', so I had imagined there would be little to worry about, and I didn't do the research I could have, which would have helped me realize that we were probably looking at more like 2-3 years before it stopped being effective.

Earlier this year, my dad again mostly dropped out of contact with me. I had thought it might have been related to a difficult discussion we'd had a while before that, and had no reason to suspect there was anything going on with regards to the cancer. I had gotten a nice email from him in June thanking me for the Father's Day gifts I'd sent him. Then, in mid-July, he forwarded me an e-mail he'd sent a friend related to some recent developments related to his cancer stating that 'the past couple of months have been a bit rough'. This was the first indication I had that there were any changes with the cancer. I attempted to phone him, and was unable to connect with him for a couple of days. In the meantime, I received a phone call on my work phone from one of his college roommates saying that he thought I might not be aware of what was going on with my father. This roommate had to look me up on the internet to find my office phone number. I spoke with the roommate, who gave me the information he had, and a day later, I finally spoke with my father and was able to get an update on what had happened:

His PSA had apparently been rising again, at first slowly, but the most recent PSA result was 111. It was discovered that he had bone metastases, and he had been in significant pain related to them, leading to the decision for a 14-day course of radiation treatment, which was apparently very helpful. He was hospitalized for a time, apparently had a liter of water outside his lung, a low platelet count, and ended up getting a substantial blood transfusion (eventually 4 pints, I believe). He is currently prescribed Vicodin to help manage pain. After discharge, the plan was to start chemotherapy with Taxotere, but they were planning to wait a week or so to allow my dad's oncologist in California to consult with his oncologist at the Mayo clinic. There were some issues in getting information to the Mayo, and then in the Mayo getting in touch with my father. He had planned to go ahead with starting chemo last week on Thursday, and told me he was going to be in the hospital a couple of days. I spoke with him on Sunday and learned that he had not had chemo, but another blood transfusion instead, and that the chemo would happen this week instead. He also said he'd had a 'long talk' with his CA oncologist, and that the oncologist had indicated my dad had some kind of blood disease in addition to the chemo, and his thought was that it might be more important to focus on treating the blood disease right now. Somewhere in the conversation, the MD told my dad that he might have "weeks or months" to live, which my dad seemed somewhat dismissive of. My dad was unable to remember the name of the blood disease when I talked to him, but I know he's had two blood transfusions, issues with low platelet counts, and that he was given a shot before leaving the hospital to help boost his WBC count. During this conversation, my dad also talked about his discomfort with his oncologist in CA. It sounded at that time like my dad anticipated speaking with the Mayo on Monday to get the second opinion and he said he'd follow up with me via e-mail.

Having not heard from him, I called him today. He said he was "feeling really good", so he'd decided not to start the chemo today, but to put it off until next week, and also indicated that he is now planning to switch to a different oncologist, due to his difficulties in communicating with his current oncologist. He still has not talked to the Mayo, and seems pretty unconcerned, saying "it's not that urgent right now".

My father has always had difficulty acknowledging his vulnerability. I have yet to ever see him cry, and the two times I've heard him cry were after deaths of important people, in both cases he shut himself down very quickly and wouldn't discuss it further. He has told his friends he 'doesn't want to burden me' with the details of his disease, even though I've made it clear to him that I am here to support him, that I care, that it's not a burden. I am also his only living first degree relative. We have always gotten along well, though I wouldn't say we've been very close.

I am very frustrated. I have so little information that I really don't know what to think about the state of my father's disease. I know that the fact that he has bone mets is not good, and I understand that chemo is generally considered the standard of care for this situation, and I see wildly ranging estimates of life expectancy from this point. I know nobody can give a good estimate, but I have a tremendous fear that my father will die and I won't be there because I was unaware of the level of progression of his disease.

I also worry that my father's minimization and denial will not only shorten the length of his life, but the quality of it. I fully recognize those are his choices to make, but I am struggling with acceptance of them.

Lastly, my wife and I are expecting our first child next February. I have not told my father yet, and I don't know whether or not to do so. If I had a high level of confidence that he would survive another year or more, I would certainly tell him. If he is going to die within the next few months, I'm disinclined to tell him, as I hate the thought of him dying knowing he will have a grandson that he'll never meet. My wife feels we should tell him, my friends are mixed. I'd certainly appreciate input from folks here.

Any thoughts or input from members here would be welcomed and appreciated. Thanks!

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/12/2009 12:34 AM (GMT -6)   
What a powerful post,

I don't know your name but I will touch on a few points you have told us. First I am sorry for your news. Your father has metestatic prostate cancer and his options appear quite narrow. But there can be some rich rewards with a positive approach. Chemo is the logical next move. Taxotere and Prednisone will indeed be a tough combination in high doses like your father will likely receive. But if he is like so many others, he will likely tolerate it well.

My next piece of advice is contraversial. I think you should allow your father to share in the love that is bringing you your new child. This is my opinion only. You know your father best, but this may buy him valuable time by thinking poitively. May peace be with your family as you make this call. But this may be a positive thing for your father that you might not see right now. Your father can be around for quite some time, cartainly past the birth of your child, you just can't judge these things. While your fathers denial of vulnerabilities might be a front for his hope in you, it may also be a denial of his dire condition. I have one thing to pass along...STAY positive and let him see it...

Lastly, this might not be on the top of your priorities, but you need to be screened the rest of your life. You don't want to miss a critical opportunity in your own life.

May peace be with you and your family.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 8/12/2009 8:00 AM (GMT -6)   
My reaction to the original posting here is that the person is incredibly self-centered and selfish.  Overall, though, I sense that professional counseling might be helpful to the son.  The father with the prostate cancer and his challenges and struggles should be the focus of attention.  Love him, support him and let him handle the situation as he sees fit whether others think that's right or wrong. 

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0

 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/12/2009 8:07 AM (GMT -6)   
I will mirror what Tony said and to offer one more thing....your father is very fortunate to have such a loving and caring son.

As you begin this new journey with your father it will provide a very special bond between him and your family. Men don't want to talk about their health much, and as a result he maybe shutting you out some, so not to talk about his cancer all the time. This is what he calls burdening you, but in reality it is burdening him. Share your life with him...yours and your wife and new baby. This is what will interest him, not talking or dealing with the cancer. He will deal with that in his own way...but let him into your world. A father is so much more interested in their childrens lives, rather than their own. When you become a father you will understand that point.

Take care and stay with us and let us know how he is doing. BTW...congrats on the new baby coming soon.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 9:19 AM (GMT -6)   
Tony, Les - Thank you for your input, especially regarding talking with my father about the pregnancy, it's much appreciated and gives me something to think about. My father has already talked with me about the importance of regular screening (especially since it was missing his PSA test for a couple of years that allowed the cancer to go from non-existent to metastazised), and I'm definitely aware how critical that will be for me.

Mavica - I'd be interested to hear more about what in my post you saw as "incredibly self-centered and selfish", as well as what you feel supporting my father would look like in these circumstances.

Lastly, I forgot to put my name in my first post, sorry about that - I'm Steve.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/12/2009 9:23 AM (GMT -6)   
I know this is a tough one for sons and daughters. I can relate to your dad however. When I was diagnosed, I didn't tell anyone except for my wife and kids, and only then because I didn't want them to worry.

I just wanted to be treated normally. I didn't want my kids or friends coming up to me with that sad look saying Oh dad, how are you feeling ? I wanted to talk about grandkids, their lives, and just normal stuff. It is a very personal thing and we all deal with it differently.

If you wouldn't have hesitated to tell your dad about a new grandchild before he had cancer, why hesitate now ? Just treat him normal. Let him decide how to process information and react.

I know you feel helpless, and in fact you are. Your dad is too. He is on a path that the options diminish by the week, and he is at the mercy of mayo and his oncologist and God.

Just treat him normally, tell him you love him frequently, and if you can soend as much time with him as you can. No one can predict with any certainty how much time he has, but there are men on this forum who have beat the odds again and again.

Stay tuned here, and let us know how we can help.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/12/2009 9:49 AM (GMT -6)   
Steve,
It's nice to meet you. I know these are difficult times for you and your family. Having lost my mother just last year to cancer, and having a great employee call me just this morning to tell me that he won't be in because his mother died this morning, I am very sensitive to these things.  I will respect Mavica's opinion, and simply say it is difficult to judge how we deal with mortality and for everybody it is very personal. I will also respect your feelings on how you deal with your fathers condition. I have not walked that mile in your shoes so instead I pray that you are able to do what is best for everyone when all is said and done. Perhaps another view is for that upcoming baby. Being able to say he was held in his grandfathers arms when he was too young to remember will be of some value to him/her. As I stated above, your father may find joy at some point with this news. Perhaps upping his will to carry on...

Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 8/12/2009 9:24:34 AM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4182
   Posted 8/12/2009 10:15 AM (GMT -6)   

Dear Steve:

First of all, I can relate to having a father who didn't want to burden his kids with his troubles.  My dad was once in a serious automobile accident in which he lost a leg...among other injuries.  He didn't want my step-mother to contact me because he didn't want to bother me with his troubles.

Part of that is just being a dad.  Now that I am one I can tell you that what we want to do is protect and shelter our kids from trouble and worry.  Frankly, telling my adult daughter about my PCa was almost as hard as hearing the doctor tell me because I knew that the news would cause her worry and pain and I did not want her to experience that.

So, the bottom line for me and my recommendation to you is that - unless your dad is mentally incapacitated - that you follow his lead on this.  Tell him tha you want to know and be involved, that you are very supportive, that you will help in any way you can and that you love him.  But, he is an adult and will make his own decisions even if you disagree with them.  You need to understand that and, without criticism, try to support him as best you can.

And, I cannot think of any earthly reason you would not tell your father about your upcoming child.  Perhaps this was part of what Mavica was talking about.  Your comments about this sound incredibly self absorbed...i.e. YOU hate the thought of him dying knowing he has a grandchild he would never meet.  Again, I have some personal experience on that front...my sister was pregnant when my dad was terminally ill.  It brought him great joy to know that she would be expericing the thrill of motherhood even though he would not be around for it.  If you deny your dad that knowledge it is, IMHO, very selfish on your part.

Sorry if this sounds a bit harsh...but we like to tell it like we see it on this forum, and that's the way I see it.

Respectfully,

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/12/2009 11:44 AM (GMT -6)   
Steve,

Thank you for sharing. I know it is not easy to ask advice from the strangers and let them scrutinize your actions. This is the most compassionate group of people with a lot of collective withdom, so you definetly made the right choice. Over short time I come to think of these folks as friends and I am sure you will too.

I can relate to all the comments above. My dad died from PCa and I did not know of his disease until a couple of months from his passing away. I was upset at him, my mom and sister for not telling me. I tried to make those two months count, but I wish I knew earlier.

Then, a couple of years later, I was diagnosed myself. And to echo prior comments, it was one of the hardest things to do when I told my kids and my mom and sisters. I knew I cause them severe pain and it was hard to handle.

So, I relate to how you feel and I understand your fathers motivation as well. I completely agree with the advice above - treat him as you would treat him if he were healthy (except you may try to spend more time with him). And share your life. Most of all be positive for the both of you.

My son is going to be a father shortly and my wife and I were part of that journey every step of the way - should we learn the sex of the baby? What kind of car seat to buy? What diet should mother have? How does the baby look on ultra sound? It brought us a lot of positive energy. While I hope to see the baby, I would hate to give up this experience even if I could not.

Finally, a thought on self-centeredness. It is absolutely normal to have as a first reaction a "what does it mean to me" thinking. I will venture to say we all react like this at first. Then we start thinking of other ways to look at an issue. I did not see your post as anything other than a first reaction of a very caring and loving son.

So, share your love with your father and keep us here posted.

Greg

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 on 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

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug

Post Edited (Geebra) : 8/12/2009 10:49:40 AM (GMT-6)


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 5:36 PM (GMT -6)   
Thanks to all for the support, encouragement, and feedback (positive or negative).

Part of the reason I wanted to put the question about telling my dad about the pregnancy out there is because I was hoping to get input from folks who are in a position similar to his - and I've certainly gotten that, which is great ... it's been very valuable in helping me think more deeply about the situation and what I want to do.

It has also been helpful to hear the stories of those of you who've had to face the situation of sharing a PCa diagnosis and treatment with your families, as it helps give me some sense of what my father has been feeling and a greater awareness of his situation.

Let me be clear: while I am feeling frustration with my father's choices and am struggling with acceptance of them, that doesn't mean I won't ultimately *support* his choices, whatever they are. One thing that is challenging for me here is that I have never faced the death of someone who was truly close to me, so this is new territory. I think I am afraid of how strong my reaction will be to his death, and I feel like preparing for it may be helpful. At the same time, preparing excessively or prematurely won't benefit anyone, so I think that's why I'm wanting so much to have a clear prognosis. I recognize that desire may not be met ... so I guess I'll just do what I can to try and support and encourage my father and enjoy the time we have left together.

-Steve

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/12/2009 9:19 PM (GMT -6)   
Great reply Steve !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 8/13/2009 10:22 AM (GMT -6)   
Steve:

I can completely understand your frustrations with your dad, but give him time and he'll work out his own solutions. The best you can do is simply to be there for him.

I do, however, have strong opinions about two things. First, I got my PCA diagnosis 2 days after we buried my wife's sister from lung cancer. Telling her at that moment was one of hardest things I've had to do to her in over thirty years of marriage. I'm sure your Dad feels some of that. Secondly, I got my diagnosis when 2 of my daughters in law were in the early stages of pregnancy with our first grandchildren. Irrespective of my future outcome, I would have been incensed had they chosen not to let me know grandchildren were on the way. I have been truly blessed by being here to see them, but I was also blessed to know of their future arrivals.

Remember the group of "survivors" on this site are always there for you.
58-year old attorney, no family history of PCa
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Post-OP:Actual involvement 15%, one lobe only; PCa fully contained in prostate-no involvement with other tissues and margins clear
Catheter out on 3/2/2008; fully continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED: 20MG Levitra every other day; Vacuum pump almost daily; some improvement, but not there yet. Started using MUSE with some success, 11/1/2008
2d undectable PSA on 7/21/2008
3d undectable PSA on 10/30/2008


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 8/13/2009 10:51 AM (GMT -6)   
Steve,
I can understand your frustration with your father's lack of communications, at this point the options he has for treatment are limited. No one knows how many months will chemo buy him. As far as telling him about the baby, I can tell you my own opinion. I have 11 grand children and one more coming in 3 weeks. If I was in your father's situation, I would definitely want to know the good news of having my first grandson. It will bring him joy and strengthen his will to live so he can see his grandson. You know what they say about grandchildren: "they are so great that we should have had them first".
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


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/13/2009 11:06 AM (GMT -6)   
Steve,

You and your family are also survivors of this disease...indirectly or directly. Much the same as us men that have the disease and are surviving, so are our wifes, significant others and immediate family and close friends. Each of us take the news of cancer differently and deal with it differently. You are showing true compassion in seeking information from other survivors, whether it is the men themselves or others that are involved.

When I was diagnosed, my sister was diagnosed with breast cancer within a month. Both her and I debated long and hard about telling our elderly mother. We lost our dad to cancer 10 years ago and it has been very hard on her. Our thoughts at the time was not to burden her with worry, but we put ourselves in her shoes and realized that would be a very big mistake not to tell her. We were both so surprise to feel her compassion, not the worry we had expected from her. To this day she is very supportive and doesn't bring the subject of cancer up, unless we do first. For my sister and I, this is very comforting as we didn't want our weekly phone calls to her to be about cancer. The point is...having cancer is what we have, not who we are.

There will never be a clear cut answer to what will happen down the road, be it tomorrow or next year. As a survivor, you will cope with that and learn more than ever, that what really counts is today, because tomorrow will take care of itself despite what you will do today. Your fathers choices he makes today, could certainly change tomorrow and even he doesn't know what will come next. It is very trying, very stressful to not know where this disease may lead, but we learn to cope and do whatever we can to minimize the anxiety that goes along with that. Most of us do just fine between the monthly, quarterly or yearly PSA tests, but the preceeding days leading up to each test are always filled with worry and the what-ifs.

You won't be able to know whats going to happen next, but you do know what is going on today...take full advantage of that each and every day. Let your father talk about his disease, when he is ready and only as often as he wants...otherwise let your visits with him involve about what is going on with your life...he will love to hear all about it.

Take care


You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08

Post Edited (LV-TX) : 8/13/2009 10:09:20 AM (GMT-6)


Amy41
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 8/13/2009 11:32 AM (GMT -6)   
My husband is fighting metasized prostate cancer right now and just could not get comfortable on our furniture - he kept retreating to our bedroom to lay down - we have been very active outdoors people and had REI Gift Cards piling up - well with the cancer there has been no need to add more gear to the locker. But we did solve the furniture issue and keeping him in the living room to watch movies with me and socialize with friends - we got a new la fuma lounge chair. You might want to check with your Dad to see how comfortable he is - by all means let him know about the grandbaby - this might be the thing to keep him fighting -
Amy

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2009 2:48 PM (GMT -6)   
i strongly agree with ed, les, amy, and the others, give the man the good news about the grandchildren. will help make things look less morbid, especially when you are talking about new life and a new generation in their family. i think it would be viewed far more positive than negative and might just help.

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/13/2009 5:12 PM (GMT -6)   
Thanks again for all the continued input on this thread. It's been very very helpful!

-Steve

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2009 5:40 PM (GMT -6)   
steve, that's what we are here for, to help each other down this unchosen path of PC

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Support4myDad
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/13/2009 5:41 PM (GMT -6)   
David - and that's great, because I'm definitely feeling a lot less alone on this journey now.

Take care,

-Steve

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/13/2009 7:58 PM (GMT -6)   
Steve-
Welcome to HealingWell. I am very sorry you have to be here, but glad that you found us. I am also so sorry to hear how extremely difficult your father's experience with PC has been for all involved. Your post hits especially close to home for me, because I was 6 months pregnant with my son when my father was diagnosed. I can't tell you how much joy it brought him that I was pregnant. He helped paint my nursery and put together all kinds of items while he was up staying with me for treatment. The day before his surgery, he put together the swing, hung pictures etc. It was extremely therapeutic for him to have projects to work on that he enjoyed so much during such a difficult time. At the time, I couldn't understand why I had to be pregnant during such an emotional time, but looking back, the timing couldn't have been better. I hope that you are able to share the joy of your child with your father and I hope that he finds comfort and strength in knowing he has a grandchild coming into the world. It's pretty incredible the joy that surrounds a child. Good luck and keep us posted!!
Father's Age DX 62 (now 64)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2009 8:36 PM (GMT -6)   
Steve, that's why you hear us mention and talk about a brotherhood here, with some great sisters helping us along the way too. You will never feel along in your journey and battle against the beast dog PC with our combined network of support, comfort, research, experience and a wide range of answers. My time here has made all the difference in the world as I have dealt with both sucesses and set backs along the way. Stick with us, brother, we need one another.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 8/14/2009 7:44 PM (GMT -6)   
I have but one piece of advise. Let the man know he's going to be a grandfather. If you don't,  it kinda seems like history repeating itself. It won't shorten his life..it'll make it a richer one.
 

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