Father fighting advanced PC for 8 years

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schammitt
New Member


Date Joined Dec 2010
Total Posts : 14
   Posted 12/20/2010 6:19 PM (GMT -6)   
Hello ,

This is my first time on this forum . I just would like other honest opinions please....s

I am doing as much research a s I can because we have been pretty much in the dark about Dads condition.This whole journey.of almost 9 years... I do know that they said it has moved to his bones in his back possibly spine she will not say... He has done everything to fight his battle including hormone which stopped working this last year..He also had a a total hip replacement last year following 6 months of chemo and radiation I have no idea why they did that . They told him he would be able to swim again and walk and that has not happened .. it seems like .He was doing pretty well 2 years ago swimming laps walking and enjoying life. My father will be 79 in 2 days. I just came back from visiting him 2 month s ago .in Florida. He was in so much pain. He was taking oxocotin which did not touch his pain . They now have him on something new he sleeps alot but is still in pain,,, He is at his best laying in bed sad My mother told us just last week from his last check up it was not good Her word were she did not know what to say to me. So they went t o another Dr last week and now he will start chemo in January.. they wanted to start chemo immediately..She told doctors they will wait till after Christmas because she does not want him to be sick She would not tell us what t he doctors told her.. I talked to my dad and he sounds different distant and sad . There is 6 of us children all adults now that live in different parts of the country. We want to go see dad but she says wait till Spring after chemo. I don't think he is going to make it through chemo.. I have read enough.. I would love any support and knowledge.


Thank you Merry Christmas,

worried daughter in Michigan

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/20/2010 6:25 PM (GMT -6)   
Worried Daughter,

Thanks for sharing your testimony about your Dad's prostate cancer. Sounds like a very advanced case, and it is indeed a sad story, one that touches the heart. And its tough during the holidays to deal with something this serious. I wish him the best, and hope they can keep his pain levels undercontrol. Hope he's strong enough to endure additional chemo. Please keep us posted, and up to date on his condition.

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 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/20/2010 6:26 PM (GMT -6)   
So sorry to hear about this.
 
There are options, such as Provenge and some other drugs, but I have no idea if your father qualifies.
 
Just curious, where in Michigan are you (I, too, am in Michigan)
 
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. 9/21/10--0.06

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 12/20/2010 6:33 PM (GMT -6)   
I am very sorry to hear about your dad's illness.  The facts you describe are quite similar, in many ways, to what happened with my own father, who died of prostate cancer.  One suggestion would be to talk with your dad's oncologist about whether hospice could be helpful.  They provide comfort, pain relief, practical advice, counselling to the extent needed, etc.  There are many pain relief options, and hospice has particular expertise in that area.  Of course, if you can visit your dad, that would be a great idea too.  I am glad for every trip I took to Florida when my dad was ill, and my only regret is that I did not take more trips down there and spend more time...  

schammitt
New Member


Date Joined Dec 2010
Total Posts : 14
   Posted 12/20/2010 6:47 PM (GMT -6)   
Thank you all so much for such quick responses! My mother does not want us to visit. Us kids are tempted to just get on a plane but we don't want to upset them.. She would not consider Hospice because she is in denial. She had him go to a acupuncture guy 2 weeks ago and said it made him worse. She thinks the pain is from something else perhaps his hip surgery.. This is the way it has been for years.. I am wondering what the first Dr, told my parents as far as time. what wonderful website. I wish I would had found this a long time ago. I will get my other siblings to read all your info

God Bless and Merry Christmas

Worried daughter

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 12/20/2010 6:53 PM (GMT -6)   
Welcome to HW, sorry for the lousy reason why you are here. I understand somewhat how you are feeling now. I lost my father to cancer this August and it was really difficult , as an adult child, in knowing what my role should be and how I could be the best use for him.

Your father has probably suffered a severe shock to his emotional system. He most likely is depressed right now and even going thru the stages of grief and loss. No one who has not been terminally ill can ever understand what they are feeling and thinking. My dad never did let me in , never shared his feelings about being diagnosed and told he had less than 6 months to live. Something about that generation requires them to buck up and be a man about it.

Your mother also is facing something similar. Hopefully, as they adapt to this new reality, they both will become more open and willing to share and accept support from you and your siblings. This is just my personal feeling, but I would take every opportunity for you and your siblings to visit with them. They need the attention and diversion from these major things they are dealing with. You need to see him and her and find some way to say goodbye, if he is really that seriously ill. Good luck with your decisions and know that you and your family is in my prayers.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Feb.
ED-total-Bimix 30cc

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 495
   Posted 12/20/2010 7:27 PM (GMT -6)   
Schammit, it is time for you to make that trip. Your mother may be upset, but this is about you and your father. She could use some rest and support herself as it appears she is using hope to keep her going. I think you could provide more than that. You would not be writing here if you thought it was pointless to go. Make the trip if you can. This is his time, and yours.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 12/20/2010 7:42 PM (GMT -6)   
Schmmitt,
So sorry to hear about your father as it certainly seems like advanced stage PCa. He has been a strong man to have battled this for 9 years. James made some great points in his post. Most of us, although not all of us, have a hard time "letting people in" at this point, let alone at the advanced stages. Hope that you do take the time to visit and if you do please remember that the way your Mom and Dad or dealing with this is about them and not about you.
 
Visit in the spirit of just being there and not allowing any expectations to ruin the visit. Hopefully your Father will have more time on this earth, but none of us know when our time is at end. They say the gift of cancer is the time allowed to say our goodbyes. I saw a book that had the title, "If Cancer is a Gift, Where Can I return it."
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
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
Started IMRT Jan. 2010 72gys
7month post SRT PSA .2

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/20/2010 8:07 PM (GMT -6)   
What a sad post yet I thank you for posting it. In my ministry I reach out to people that are suffering emotionally and spiritually while dealing with cancer. I am not a doctor by no means but I am someone who cares deeply about the feelings of others. This is all too common for elderly couples to act this way. One is in denial and the other is suffering from the illness. The sad thing is that the dying person at one time would have like to talk but was probably shut down. It was not intentional of course but it happened. It is difficult to reopen that door because the ill person figures that they are burdening everyone with their emotions and as a man we are suppose to be strong.
May I suggest two books to you. One is "A Reason for Hope" which I will gladly send you if you will email me an address. The other is "On Death and Dying" by Elizabeth Kubler Ross.
Both excellent books and will change the way you view cancer and the dying process. I have even seen many cases where hope is put back into peoples lives and they live longer and feel better.
I hope your dad has many great months and years ahead. One last thing, go ahead make that trip I bet he would love to see you.

peace and love
Dale

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 12/21/2010 9:11 AM (GMT -6)   
Sorry to hear about your dad, it sounds like he is a tough guy who is still willing to battle. In his condition I don't know if advise or any cancer help is needed as your mom and dad have been fighting this for years and by now know what the options are and what they are willing to do. I am sure they also know that you and your siblings are there if they need you. You might find it helpful to keep in touch with the menbers here for your own support. It might be that your mother is right about the pain being from the hip replacement. It might help your mom if you can get her to talk to you as surely she is under a lot of pressure. Just keep calling her don't give up..
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,0.01@12 mo.

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 12/21/2010 6:57 PM (GMT -6)   
You could call the local hospice, explain the situation with your mother not wanting hospice becuase she is "in denial," and seek advice. A hospice doc may be willing to see your dad as a "pain management specialist" rather than a "hospice doc". Maybe that would be more acceptable? Failing that, your oncologist could consult with a hospice doc or pain management specialist and prescribe appropriate pain meds. There is no reason why someone should have to suffer severe pain, when there are meds that can control it. Regarding the visit, I know it is a very tough situation when you are told "don't visit." But I would do it anyway. Tell your mom you need to do it for yourself. Maybe it goes down better if you are doing it for YOU rather than for your mom or dad. But if that doesn't work, I would just get on a plane and do it. If you take some flack for it, so be it. You will be happy, in the future, that you did not let the opportunity pass.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

schammitt
New Member


Date Joined Dec 2010
Total Posts : 14
   Posted 12/22/2010 3:32 PM (GMT -6)   
Hello I am so glad i found this Healing Well Community. Every one has been so kind and helpful. I find my self coming back to this community just to read sometimes it is inspirational other time it is heartbreaking.. I woke up this morning knowing that today is my Dads Birthday. I just started to cry i find myself doing that often .. If i Hear a Christmas song like Johnny Mathis there i go.. If i watch a spiritual movie I always feel better this is so hard . Tried calling Dad to wish him Happy Birthday.. I am glad in a way that my mom did not answer because i probably would break down when I talked to him.. I know he does not need that from us right now......no one answered the phone so I did my singing Birthday song as that is our tradition in our family. A few of you mentioned hospice but i know that is not an option for my father at this time if it was my mother will not have it. She wants to take care of him.. She thinks he is going to be fine . I do know they are back at the Dr. today my sister says my father has been getting sick not able to hold food down... He is having another Ct Scan today. His Chemo is scheduled for Jan 1. Just an update. We all a re ready to fly out there but we were told not to. We are going to hang tight for a few weeks i guess.

God Bless all of you that are fighting PC. and other forms and I wish all of you full recovery and to be healthy.




Merry Christmas from worried daughter in Frankenmuth Michigan

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/22/2010 4:58 PM (GMT -6)   
schammitt,
Not much to add than the others have said. I will, however, offer my prayers of hope and love for your family. Thank you for coming, you can ask anything you want, we'll try to give straight answers.

Have a safe Christmas. And glory be...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino
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