newly diagnosed

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bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 1/11/2007 9:58 AM (GMT -7)   
Dear HEALINGWELL, I usually post on fibro, depression or chronic pain (what a mess I am!!) but now I need help for my hubby.
Diagnosed 6 weeks ago. PSA 9.7 gleason 9, age 57, every biopsy sample was cancerous, epididymitis(testicle the size of a grapefruit and fever) other fevers. Robotic surgery is on Mon at Tulane in New Orleans. Both his parents died slow painful deaths at an early ager./ We live on the gulf coast and lost EVERYTHING in Katrina, living in A FEMA trailer. My husband is terrified that when they open him up, it's gonna be bad.
    How do I help him? It is the most godawful feeling to see a loved one scared and in pain. Oh, also they are taking out prostate, lymph nodes, nerves and surrounding tissue and doc says we willnmot get it all. Be brutally honest, what kind of tyime line are we looking at? We have a gorgeous10 yr old daughter-will he even beat her high school graduation? PLease write me, it is my first day of fear and crying since dx -thanks y'all mags

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 1/11/2007 10:30 AM (GMT -7)   
Dear Bayoub2,

Your feelings flow from your post and wash over me with sadness. Yes, your husband's biopsy results indicate that the cancer is aggressive and has probably spread beyond the prostate. This does not mean that it is not treatable. I would suggest that you go towww.yananow.net. When you enter the site click on Mentor Experiences and scroll down to Hormone Treatment. These are stories by men that, like your husband, was diagnosed with prostate cancer that was advanced. If you read some of those stories you will find many of them were diagnosed more then 10 years ago and are doing well today. Take heart and have faith that your husband will successfully fight the cancer. There has been a lot of new approaches toward advanced prostate cancer. Tulane should be up on all of the new approaches but if you feel uncomfortable with them then seek out another opinion. MD Anderson in Houston is not that far from you and they are a premier cancer center in the world.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06


BenEcho10
Regular Member


Date Joined Jan 2007
Total Posts : 133
   Posted 1/11/2007 12:38 PM (GMT -7)   
Dear Mags,

I am so sorry to hear of your husband's diagnosis. I had a Gleason score of 10 myself so I understand the fear that you and your husband feel with a high Gleason score.

There are any number of possiblities as to what will happen and you just have to take them each one step at a time.

The first step is to get through the surgery and see what the doctors learn from that. At a minimum they will remove billions of cancerous cells from your husband and also learn a great deal about exactly where the cancer is located which will greatly aide in future treatments. It is possible (although perhaps not likely from what your doctor has told you) that the cancer is contained in the prostate. It is also possible that it has spread, but not far, such as to the adjacent seminal vesicles. Finally, it may have spread further out into the body such as to the lymph nodes or even to the bones. Each situation will suggest different treatment options. This is why having the surgery will be a big help. You will learn a lot of information about the location and pathology of the cancer.

If the cancer has spread outside of the prostate, I believe that the primary follow-up treatment options are generally hormone therapy, chemo, and radiation. Your doctor may suggest one, two, or even all three of these treatment options. Since my own situation has not yet indicated the need for further treatment after my surgery, I am not as well educated in these treatments as others who write on this site and I will let people who know more than I give you more information on these treatment options. You can learn a lot about different treatment options just by looking at other postings on this web site (or on other sites like Tamu suggested.) Also, if you have not already done so, you might want to buy or check out from your library Dr. Patrick Walsh's book on prostate cancer. It has a lot of good information.

If you do follow one or more of these treatment options after your husband's surgery, you may also want to consider whether or not it would be best to switch to an oncologist or other doctor. Many of us start out with our hometown urologist and then move to someone with more of a speciality in prostate cancer and particularly one who treats prostate cancer with the exact type of treatment that you are considering. Of course, if your current doctor is knowledgable about various treatments and is giving you all the information that you need and desire, then you may prefer to remain with him/her.

You do not mention if your husband has had any type of bone scan or other whole body scan to try to determine if the cancer has spread. If you have had this done, post the results for other respondents to see. If not, I encourage you to ask your doctor about this. It is normally done, particularly in cases of higher Gleason cancers like your husband's and mine, to help determine if the cancer has spread to the bones or other areas of the body. Again, this will help determine the best treatment regimine. 

Do not despair. The treatments today are much more advanced and effective than when your husband's parents had cancer. As I am sure that your doctor will tell you, even people with advanced prostate cancer can survive for many years.

Ben


STATISTICS:           
 
DIAGNOSIS: 09/25/06 at age 49. PSA 4.6. PSA free 2%. Gleason 10 (first graded as 8, subsequently re-graded as 10.) Clinical stage T2a.           
 
SURGERY: 11/08/06. Radical retropubic at Johns Hopkins (half way across the country for us.) Surgical pathology was stage T3a with positive margins but negative seminal vesicles, negative lymph nodes, negative on bone scan.
 
RECOVERY: Catheter was in for 26 days (not fun) due to blood in urine.         
 
POST OP: First post op PSA was 0.00 in 12/06.

Post Edited (BenEcho10) : 1/11/2007 3:03:03 PM (GMT-7)


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 1/11/2007 9:24 PM (GMT -7)   

While my situation is much different from your husbands, my brother had a very similar diagnosis back in 1995.  All the cores of his biopsy were positive, and they didn't really give him any options.  His urologist went for the surgery - open at the time - as the only option.  After opening, the doc decided there was too much and just closed him up.  My brother didn't quit, and got radiation and hormones.  While everything hasn't been easy, his PSA is less than .1 right now and he's enjoying life, 11 years after diagnoisis.  He finally stopped the hormones - wiped him out too much. 

Today with the robotic surgery - mine is next week - I'm sure they'll be able to get as much of that cancer out as possible, and then as Benecho10 said, use a combination of other therapies to control the rest.  My brother is going strong after 11 years, and with better treatments today, your hubby should make your daughters high school graduation, college graduation, and his grandchildren!

 
PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006
1 of 10 cores positive 5%
2 others questionable (small gland proliferation)
Gleason 3+3
Robotic surgery scheduled January 19, 2007


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/11/2007 11:19 PM (GMT -7)   
Hey Mags,

Sorry about your hubby. What you are dealing with right now is the darkest hour. Stay here for support. It is a great place to air your feelings and fears and you will always have a bunch of sympathetic listeners. We all know what you are feeling and want to support you.

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
            "Squeeze before you sneeze!"


PV1723
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/11/2007 11:42 PM (GMT -7)   
While I read all of these postings, I can see that there are many people that are in the same "boat: as my husband and myself. My husband, 58 diagnosed +Prostate CA 5/23/05, PSA 6.8, gleason 3 + 4 , T4c, 10+ of 12. Rad Prostectomy 6/3/05 , escaped capsule to margins and lymph nodes. Bone Scan negative. We have completed radiation therapy, and we are in our 2nd year of hormone therapy. I have read many postings of each individuals experiences and we can completely relate. Last PSA check undetectable. We are hoping that will continue for years to come, after we stop the hormones, in Sept, 2007. How are you all doing with the hormone injections? My husband is really having a difficult time. His world went upside down. He says he feels like he is in someone else's body. Did you all feel as though your surgeons were honest with you, regarding the results and after effects ? We understood the short term results, but no one spoke to us regarding the long term effects. We are having difficultiy adjusting to the changes in how we now have to make. We miss our familiar "dance". We know it will need to change, we just don't know exactly how, yet. Quite honestly, my husband is very depressed, and will not even talk about it with anyone, even (especially), me. He is embarrased and no he will not talk to anyone professionally, and will not consider antidepressants. I am 8 years younger and my husband feels as though he has let me down. I can't pretend that I don't care about not having his affections, but his life is more important to me, and he believes he is going to die, in the next 8 years ! I tell him if he believes that, it will happen.. Nothing anyone can say will change his mind. He is trying to cope but he will not except any help. He is very angry that the surgeon took his prostate, because he feels that it doesn't make any difference in the outcome and it would have left him " Normal". Any ideas? All ears!!!

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 1/12/2007 7:00 AM (GMT -7)   
Mags - we haven't had the same experience but others here have given you good advice. PC is no longer a death sentence. in addition to the medical stuff, there are also other things to do to stay healthy - drink pomegrante juice, take prostate supplements (Prostate 2.2 - the doctors should know about it and will give you the info you need to access the web site). you're going to an excellent hospital. heck, you've been through a worse storm and survived.

PV1723 - hang in there with your dh. communication is so important but it's hard when your dh won't talk with you. my parents went through the same thing and had a very difficult time adjusting to not having sex anymore. just keep supporting him and telling him that you love him no matter what. maybe with time he will open up. I suggest that you start a new thread with your info so others can find you. you're not the only ones going through this. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 1/12/2007 7:38 AM (GMT -7)   
PV - you've come to the right place for support. Our world became a better place the day we found this forum. There are tons of experiences in here that make you feel part of the group and nothing you are experiencing will be abnormal for your choices of treatment.

Does your husband use the computer . . .could you introduce him to this site? Even you just telling him about it and reading / printing some of the significant posts could make a huge difference to him.

Hang in there and we hope to hear more from you.

;o) Linda & Bob
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more agressive, previously undetected cancer)      PSA UNDETECTABLE.   Next PSA check Feb 27, 2007.
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


PV1723
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/12/2007 9:20 AM (GMT -7)   
Age 59 diag 4/05 rad prostectomy 6/05
PSA 6.8, Gleason 3+4, T5c, biopsy 10+/12
escaped capsule to lymph nodes/ 14 removed
 
 
We are in clinical trials of 2+2/  meaning 2 years of Lupron and 90 days of radiation.  then 2 years off Lupron/ check PSA.  Status:  to date  Lupron will be completed  9/07.
 
While J is still on Lupron, he has no interest in sex or alternatives what so ever. double whammy is the radiation too.  Our MD says don't bother.  We have tried Viagra etc  nothing works. 
 
Most importantly is we are alive !    After all it is CANCER..  There is great hope for us to return to an active or at least interested sex life, after therapy.  Is there anyone out there in a simular situation, that can give us feedback.  Please be honest.   Our MD's basicaly just skirt the subject.  Most are MEN and just don't want to talk about it or they say "  you are cured  be glad.."     and that's it. That's the surgeons take on it, but the onocolgist say a different tune.  J's brother is an onocologist and even he won't go there.   Nice to have found this forum.... thanks to all and be happy and gratefull nfor each other.  
 
PV1723 :-)

PV1723
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/12/2007 11:13 AM (GMT -7)   
No J does not use the computer, but this AM I did read to him the responses to our posting, and he is listening. That's a start. I know he is scared, me too. Yes, I do tell him everyday that I love him no matter what. The sex thing is sad, but we still have each other. Problem is he really feels like he is letting me down. He won't go there that we may never be intimate again, and I am ok with it. It is only one aspect of a relationship. I just can't convince him that its okay. He will not talk about it. I think this forum may help. I am open for all advice. Thanks to all...

djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 1/12/2007 3:27 PM (GMT -7)   

Dear Mags,

Welcome to a very supportive website. Please know that this group cares about each other and gives thest advice they can.  I am also 57 and 4 months following a robot procedure done at Baylor in Houston. That operation is very minimally traumatic, and if they can carry through with it, recovery will be very fast and relatively painless.

Apparently, because they have offered you the robotic surgery, they felt that the problem was fairly locally contained--the routine is usually to do a bone scan and maybe a CAT scan, and if these don't show advancement, they go for the robot.  Sometimes, they have to convert from a robotic to an open, but it would be unlikely with the information that you give, that they would just open and close.  However, this is a disease in which something can usually be done over a long period of time.

If that unlikely thing happens, look at the websites for and into contacting the Baylor College of Medicine Dept. of Urology (Brian Miles, M.D.) or Radiology (Brian Butler, M.D.), to inquire about their gene therapy research protocol.  It may be that this is a multicenter study and Tulane may be involved with it.  Tulane has a very close relationship with Baylor because, while Tulane was getting things back together after Katrina, Baylor took over their medical students and made it a combined medical school for a while.

All the best for Monday, and please keep us posted.

dj


dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
Follow-up PSA (11/06): <0.008; serum T: 195 OFF Androgel (at present).


Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 4:25 PM (GMT -7)   
Mags, I'm sorry to hear that this awful monster has got a grip on you and your husband, from what I've heard from my brother (lives in N.O.) the government has really let you good folks down too. As the others have stated, I'm glad you found us, this is a great bunch of people here. There is just about every stage of PC represented. I know we all can't posibly understand exactly what the others are going through, but we can come closer than anyone else. We all have our own battles going on at various stages this horrad disease and we all talk to and care about each other almost like family on this site, just stick around and you'll see. God bess you both.

PV, I can relate more to your husband although my PC stats were not that much like his, my depression and attituude were for a long time very similar. I did not have radiation or Lupron, but I do know what it feels like to be a man who's testosterone levals were too low. I can tell you honastly, I never felt so worthless in my life and although I was one of the lucky ones who could acheive an errection, I had absolutly no desire to use it. If you have the time, please go back and read my post "Low testosterone after R.P." and you will understand where I came from and how the people on in this forum have helped me. I am now the old Pete again. Someone I thought was gone forever! So please don't ever give up, thing can and do change. God bless you both my prayers are with you.
Your new friend, Pete
Pete's Co-pilot,
Lisa


Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 4:29 PM (GMT -7)   
Mags & PV,
I've done it again! This is Pete who wrote the last post to you. I came home from work and forgot to change the login from my wife's name.
(Pete's Co-pilot, Lisa) Sorry all, it's been a long week!!
Your friend Pete (HONEST!!)
Pete's Co-pilot,
Lisa


Pete's Co-pilot
Regular Member


Date Joined Jan 2007
Total Posts : 21
   Posted 1/12/2007 6:23 PM (GMT -7)   

Mags,

Lisa here-My heart goes out to you & yours and I only want to add one thing to what's been posted already..."courage is fear with faith" and having been through ALL you've endured I know you and EVERY PERSON here, are incredibly courageous people. 

Hold on to your faith, hold on to eachother and hold on to the knowledge that your circle of "light" has just increased ten-fold.  Everyone here is pulling and praying for your strength and recovery. 

PV,

I hope you keep reading to your husband from this site. The information, experience and insight these folks have to offer can be life-changing.

I, like so many wives and partners here know EXACTLY how YOU feel too.  Any serious illness takes it's toll on the person with the illness and his/her family and friends, but in addition, THIS disease is especially cunning in it's ability to try and destroy couples. 

There are plenty of ways we can still be intimate without intercourse.  But take your time and remember that the power of physical "touch" is imperative to human survival. We ALL need it and it doesn't have to have anything to do with sex.

So hold on to each other, keep telling him how you feel and with time hopefully he will come to understand and believe your words and allow himself to enjoy your love again.  God bless you both.

Lisa


Pete's Co-pilot,
Lisa


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/12/2007 6:51 PM (GMT -7)   
Amen Again!!! Lisa!!!
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
            "Squeeze before you sneeze!"


bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 1/13/2007 9:07 AM (GMT -7)   
Dear Everyone- thank thank thank you for the info, resorces your"listening ears", your open hearts...HW was my saving grace when I was DXes with fibro-another disease they tend to "pooh-pooh".
People tend to think PC is not a very serious cancer, likea Mc Cancer, and we are finally tired of trying to explain that PC is 2nd leading cancer death in men!!!! Oh well, I pray they will never have to find out first hand-LOL!
Will be talking to youall later- family, faith and friends, I hope all of you have planty of them love, Mags
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