wife needs emotionally advise about husband's pc

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kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/4/2009 10:39 AM (GMT -6)   
HI: I need some advise from some of you out there. My husband was diagnosed in April of 2007. He went through hormone treatment which will end in December as it has been 2.5 years and he also had radiation. Things were okay until this April when his psa went up from .07 to 3.5. He was put on casodex and in August it had decreased to 1.5. He goes back in December (to his oncologist) for another psa and check up. Up to this point he was handling things quite well, but after seeing his oncologist and him not really giving us any answers why he thought it might have rose. My husband is sure that the cancer was never under control and that now his options are up and that it is just a matter of time as we know that chemo is just something that really doesn't work. One question I have is what do we approach the oncologist with? What do we ask him? What are some of our options?

My husband is angry and upset and says things I just don't know how to react to or if I should react. I am scared like he is, but I don't know what to say to him. Does anyone out there who is going through a similar situation or just has some advise. I would appreciate anything right now as I just don't know what to do.

One thing that has to be know is we live in Saskatchewan and we have limited doctors. It's not so easy to just say we want another opinion so we need to be prepared with questions when we see our oncologist next.

Thank you so much for any replys I get. My husband does not use this forum as he stay away from the internet. For him there is just too much information and a lot of it is so conflicting. I know pc is very individual, but there has to be something we can do at this point.
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/4/2009 11:19 AM (GMT -6)   
Hi kak,
I don't think your husband should stop hormonal therapy in december. It will help during chemo.
Your husband has to know that Chemo does work. Don't look at the averages, look at the cases where it extends years for a guy. Plus, many clinical trials, such as Abiraterone require at least one round of chemo before commencing with the trial. Having been here a few years now, I have seen many guys doing well with rising PSA such as your husbands case. I would ask your oncologist about trials, and the best path for your husband. He should have at least some input to give.

Very important, he and you, need to stay positive. There is still plenty that can be done with second line hormone therapies.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 11/4/2009 12:03 PM (GMT -6)   
Kak,

If hormone therapy doesn't take the psa to below 0.05 and hold it there for a few months, it's a sign that the PC is androgen independent and other drugs have to be administered. Ask your oncologist for his recommendations or if you are able, get a 2nd opinion from another oncologist that is more experienced in prostate cancer.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/4/2009 1:03 PM (GMT -6)   
Kat
Your husband’s case is a tough one, but don’t give up hope. As others have said, chemo can work and new drugs are becoming available.

You raise the question; “was the cancer was ever under control?” That is the unanswerable question which hangs over every one of us here and the answer is that we will never know until we die of something else. It is simply beyond the bounds of medical science to ever be certain. All of us go from PSA test to PSA test carrying that nugget of dread.

You speak of fear and anger. We have known these too, and we struggle against them. Not only do they weaken our bodies, they poison our lives. On the basis of personal experience I strongly recommend professional therapy. These feelings often stem from depression which is not a moral weakness but a chemical imbalance in the brain. If professional therapy is not accessible to you, then look for a PC group of a cancer survivors group – often run through a church or civic organization.

I know that you are in pain and so I ask you to forgive me when I speak very forthrightly. You say; “He says things I just don't know how to react to or if I should react. I am scared like he is, but I don't know what to say to him” This is a symptom far worse than the outcome of any medical test because it means that this Cancer is forcing a separation between two people who love each other. None of us know what our lives hold or for how long. All we can do is live what we have in the best possible way.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day

Post Edited (geezer99) : 11/4/2009 2:05:37 PM (GMT-7)


kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/4/2009 3:33 PM (GMT -6)   
TC-Las Vegas-'What did you mean by second line hormone therapies. My husband has been on lupron shots every 4 months and used casodex for first 6 weeks with lupron and than was put back on casodex when his psa rose.
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/4/2009 3:36 PM (GMT -6)   
I guess I was a little misleading. Mostly things are good between my husband and myself . We have bad days and my posting was a result of a bad day. Actually I think my husband and I are closer for the most part just some days, well you all know of the some days.
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/4/2009 3:51 PM (GMT -6)   
Second line HT consists of Ketoconazole, DES, Estrogenics, Nilandron, Abiraterone, and more. Typically when an LHRH agonist, like Lupron, begins to fail then adding the others may buy more time before Chemo. Some argue to do the chemo then the 2nd line HT drugs, but that's a discussion for your oncologist.

There is still much to hope for...

Tony

Post Edited (TC-LasVegas) : 11/4/2009 3:23:36 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/4/2009 4:08 PM (GMT -6)   
kax,

I feel for both your husband and for you. Even in a good or excellent relationship, a severe health issue like his can be hard. My wife is a nurse, and sometimes, even with her knowledge, she jsut doesn't know what to say or do to help me get through a hard day. I try to tell her, that just being here is good enough for me. I know there is not always some magic word or pill to take.

Your husbands situation is definitely serious, but as Tony as said, there is always hope, there are things and treatments and drugs coming down the pike that might be apt for your husband. I hope so, for his safe, and for your's too.

Please keep us closely posted of his situation. Perhaps some of the other dear wives here will post some words to you from a wives perspective.

Be thinking of you both

David in SC
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% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/4/2009 4:29 PM (GMT -6)   
KAK

Thanks for sharing this difficult experience with us. Would you mind emailing me so we can discuss this further. Your husband is not at the end of the rope. There are many chapters in the book of life yet to be written. It makes perfect sense the anger he is dealing with as well as the uncertainty. I look forward to hearing from you soon.

peace and love
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 11/4/2009 6:43 PM (GMT -6)   
Kak,
Sorry to hear about the problems you and your husband are experiencing. One I first found out I had prostate cancer I was extremly angry. I read several books and finally one night sat down with my wife and talked to her in detail what I was thinking. I know there are many books out there but one Chapter from a Book Called "Prostate Cancer for Dummies" by Dr. Paul Lange (yes another dummies book) really helped me with my thoughts. In particular page 302 and 303 helped me.
I sat down with my wife and read each of the points listed to her that I was experiencing. After that it helped her and me both. I would print here but of course with Copy right laws, etc and way to much to post! If you can find the book or some other one it might be helpful.
It talks about Anger, depresiion, Fear of abandonment, insecurity and jealousy.
Larry
Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0

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