Daughter scared to death

I'm from North Carolina.  My father was recently diagnosed with prostate cancer.  I am unsure of his PSA, but I think upper teens.  His Gleason score is 4+5=9.  I am so worried for him.  I don't want to lose my dad, but this word "cancer" is keeping me up and turning my world upside down.  Can anyone here give me some good news?  Will I lose my dad in 5 or less years?  I'm not ready to count his time down yet? 

He is 65 and in pretty good health.  He has been experiencing bone pain, but it is in his upper body, maybe associated with artheritis.  But, from what I've been reading, it could be prostate cancer in his bones.  Can anyone shed light on this for me?  Could it be prostate cancer in his wrist and shoulder? Or, is it normally in the pelvis and thighs and lower back? 

Please, can anyone give me some information?  I'm sick to death over all of this and have no idea what to expect.  He has surgery on June 25.  Your prayers would also be appreciated.  I love him so much.

Thank you all in advance and I wish you all well.

Southerndrawal72

Hey SouthernDrawl and i am sorry to se you here ,
Usually before surgery the Urologist suggests a Cat Scan and full Bone scan to make sure that the cancer is confined to prostate and operation can be perform , oppose to other treatment choices.
However in general prostate cancer is a very slow moving one , my PSA was high for 2 years before i was diagnosed with Gleason 6 cancer.
Many on here had a similar Gleason 9 , and it is certainly not the end of the world ... treatment is necessary right away BUT the odds are most are successful in battling the disease....
Good Luck and keep us posted !!

GB

Welcome to the forum, sorry you have to be here under these circumstances. 

If you can gather all the info your father has received and put it into a signature file to use when posting, it would help others when replying to your posts. 

Several folks here have similar situations as your father, so they can give you better insight.  The rest may be along shortly...

southerndrawl72

I am so sorry to hear about your dad.  A high Gleason score is not the end of the world.  Mine was a 10 and I am undergoing treatment at the Proton Therapy Institute in Jacksonville, FL.  Just don't panic,  rather help your dad do his research into the best treatment for him.  Our friendly folks here have seen just about everything at one time or the other and are here to help as much as they can.  I have a website www.gleason10.com and it's sole purpose is to assist others in similar situations. My Journey is in this forum under Richard's Journey. 

Please stay with us and share your dad's journey with us.  Ask any and all questions you need as there are never any that one needs to keep to themselves.

Richard

SD72-

There are three books, each by a different doctor, at least one of which you should read. The books are by Walsh, Strum and Scardino. You can order them through this website or directly from Amazon.

In addition, it is vitally important that you seek out the best doctors and hospitals you can afford, through insurance or otherwise. There are doctors and there are great doctors. And there are doctors whom, after encountering them, you may choose to "fire" and seek another. Don't hesitate to do it - it's done all the time. This is probably the most important battle you'll ever fight and it's up to you and your dad to guide it through to it's successful conclusion. And it can very well have a successful conclusion, but you two have to be strong, confident and informed.

It might give you comfort to read my signature below. I'm still going strong and am confident about my future.

I wish you both the best of luck.

-Les

Thanks Barry. Just doing the best I can. One step at a time.

BTW - I'm not one, but Happy Father's Day to all you guys who are.

Thank you all for your input.

I spent time with dad today and got some more information from him. His PSA was a 5 and his Gleason Score is a 4+5=9 as I thought. The pain he is experiencing is in his leg, hip and lower back and from what I've read so far, that is a sign of metastasis in the bones. I am praying not. Dad didn't tell his surgeon about the pain. Dad is going to the VA in Asheville to have the surgery by a doctor from Duke who works for the VA. The doctor is Dr. Fitzsimmons, I believe is what I saw this morning.

The sad part is, as I ate breakfast with my dad, he looked so distant and sad. I don't think he knows enough about what to expect. I think he, like I, automatically thought death sentence. I don't think he had been given enough information to know anything about what is going on with him. I want to give him some good materials with some hope in them so that he can at least get his spirits up. I know that mental health as well as physical health help with the recovery process. Dad is a proud guy and his concern, besides thinking his clock is ticking down quickly, doesn't want to be incontinent. I told him that the percentages are lower these days.

I'm not sure what good information I could pass on to him for him to read. Any ideas on PCa and treatment literature.

Has anyone heard of Dr. Fitzsimmons from Duke? I'm going to google him to get some information. They have already scheduled dad for surgery on June 25 and then will let him know if more treatment needs to be done.

When I start to talk with Dad about this stuff, I almost want to cry. I can't think of life without him yet and I am scared.

Thank you all so much for your kind and welcoming words. I will be here every day for knowledge and companionship for both me and my dad. He doesn't have a computer, so, if you would like to leave him some messages of hope, I will print them and take them to him to read.

Blessings to you all,
Southerndrawal72

______________________

about my Dad:

PSA 5

Gleason Score 4+5=9

Scheduled for surgery at Asheville VA on June 25

Surgeon:  Dr. Fitzsimmons (from Duke)

Father's Age: 65

Hip, leg and back pain.

 

Post Edited (southerndrawal72) : 6/14/2008 12:44:19 PM (GMT-6)

My pre-op figures were very similar to your dad's. PSA 5.7 (slowly rising) and Gleason 4+5=9. I had a bone scan pre-op, apparently standard practice with my uro for high Gleason scores. So I think it would be a good idea for your dad to also have a bone scan, and to be upfront about his pains, especially as you are worried about them.

I had surgery 3 months ago, and after the pathology, my Gleason was downgraded to 4+4=8. The cancer was confined to the prostate.  I also had a bone mets scare, but it turned out that I was worrying needlessly. My uro told me that my PSA would be "in the hundreds" before I would notice any physical symptoms from PCa metastasis.

I also at one time thought that I might have had only a year to live -- we always think the worst at times like this, just after diagnosis. I have had two brushes with cancer, and thought the same both times. Wrong both times!  

My uro is confident of a "cure" -- I'm still not so sure. But I now realize that even if the worst happened, and my PSA started to rise again, there are other treatments still possible, so I should still be able to survive for at least another 10 years, which will take me beyond the traditional three-score-and-ten. And in that time, medical science may find some new treatments.

Before my brushes with cancer, I was afraid of getting cancer. Now, after treatment, I'm still afraid of getting cancer. So nothing has changed! In fact I am now better off than before, because I no longer have two bits that are very susceptible to cancer, and I will have better monitoring than I would have otherwise.

Yes, it's normal to feel down for at least a few days after a cancer diagnosis. But we do come out the other side of this, and fortunately, nearly always things turn out a lot better than we first feared. So chin up and keep us posted

Dear Southerndrawal72

Do you live in Asheville? I live in Marion and just went through this last May. If you need or your father need to talk just let me know and I'll give you my phone number.

Mika

Hi Southerndrawl:

My husband's surgery was just this last Monday (June 9, 2008). We found out he had an enlarged prostate in March. PSA and biopsy in April. Diagnosis 5.01.08. There were some really difficult moments in between. I have read so much information and researched as much as I can about this disease. While you may feel out of control and wish to get off the roller coaster ride you now find yourself on, please know that education is your best ally. Read! Read! Read! Your father will begin to trust your knowledge. My husband only was hearing 1/2 of what doctors said. I had to be his ears and his eyes. Go with your Dad to any doctor's appointments. Get his permission to be involved in his treatment. Ask his medical providers to provide a HIPPA form and get your dad to sign it so you can know detailed information. Again, Read! Read! Read! Advocate for your father and also for yourself. This disease effects a man and all of those in his life. We are fortunate so far, but know we have a long road ahead of us. My husband was performing kegel exercised one full month prior to surgery. He has a very good outlook also and being positive going into this is very, very important. My southern born and bred heart goes out to you. Please let me know if I can help you in any way.

Husband Tom's Info:

PSA 6.7; 5 of 12 cores positive; t2b stage; 3+3=6 on left; 3+4=7 on right; DaVinci on 6.09.08 (6 days ago); lost right nerve bundle; Margins verified on Friday were clean. (Great news) Doctor: Jean Joseph, M.D. of University Urology; Surgery at Strong Memorial Hospital, Rochester, NY. (Dr. Joseph: top 10 DaVinci surgeons in country)

I have started to post a number of times and keep getting pulled away from the computer. Anyways, I know EXACTLY what you are going through. As you can see from my signature, my father was dx and had treatment this year. He is currently on HT and completed surgery and radiation. I have MANY, MANY, sleepless nights and would be happy to help. Similar to you, I was doing a the research for my father and somewhat took the wheel as he and my mom absorbed the shock of cancer. Feel free to contact me anytime if you have questions or want to chat. Hang in there and stay strong. You will have good days and bad days, my prayer for you is that the good days far outnumber the bad. HW is an incredible site as you have probably already noticed. Keep asking away and keep holding on!! Sending both you and your dad my best!
Doting