Advanced Prostate Cancer Discussion?

Hello All. This is my second post. My 67 year old father was recently diagnosed with advanced PC. Gleason score of 8, positive bone scan. We've spent much of the past couple weeks searching the internet for information to help us make the best treatment decisions. We have opted for an orchiectomy.

While I have found this discussion board extremely useful, most of the cases here, as well as at healthboards.com, relate to Stage 1 through 3 PC cases. As we know, once the PC has spread significantly beyond the prostate, it is a very different story in terms of treatment options and prognosis. Thus I find many of the posts here to not be directly applicable to my father's case.

I'm wondering if there is a discussion board devoted to advanced prostate cancer discussion. I think this would be a very useful resource for advanced PC patients and their loved ones. It would allow us to access the info we seek more efficiently, and to commiserate with others in similar situations. Does such a discussion board currently exist?

Thank you very much,

Sam

Sam,

I can't say we have a specific forum for advanced PC but there are members here who are in different stages. As you can see by the sig line info here, my husband's surgery did NOT give the expected results. The cancer had already spread to distant lymph nodes. So, I understand your desire to speak to others who are in the same situation.

Here is a site that was developed by Don Cooley who is a survivor. It has SO much helpful information and there are many there who mentor others: prostate-help.org

It has been an immense help to my husband and myself. You can feel free to email Don and he will answer any question as best he can or will guide you to some help.

Another site is a blog written by a young man with advanced PC - just reading his story is uplifting: prostatecancerat42.blogspot.com

It's a difficult road to travel and at times it's overwhelming but there are others who are in the same situation. The folks here are among the best researchers and "encouragers" there are so, still come here.

What a wonderful thing your father has you to help him with all of this...no medicine makes up for love.

Wishing you all the best,
Susan - wife of myman, Don

---

Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3

Sam, their are others here who are in the same boat as your dad. TC-LasVegas is one who didn't get the expected results following surgery. I believe they put him at a stage 3, maybe 4, and he had been doing alot of research regarding options. I haven't seen him around here lately, but will send him an email to see if he has anything that may be of help. My father was diagnosised at the age of 49 with stage 4 PCa. Although, he didn't survive, (it was 15 years ago), he did have great success with his treatments, until the end. He started with hormones, and later added radiation. At that time, we were told that Chemo didn't do anything for PCa, but it did for him. It took his PSA from over 100 to 2.6. Many, many advances have since been made. MD Anderson in Houston is a great place to go. Good luck to you. Courtney

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Kurt & Courtney

I too can assure you that you are not alone. In the last few days alone--I have been tremendously supported. one of this boards posters sent me to yananow.net. On that site you have the chance to read stories from many people. The nice thing about it was that the list can be sorted by gleason score, psa, and age. Like you I find it sometimes hard when everyone that posts regularly has numbers that are less extreme than mine. Remember that the level of terror that each one of us feels is the same--even when the numbers are not.

Additionally what I have found is that even though many of the people's numbers are more optomistic than mine--they have been in this so much longer than I --they have answers to my questions and have been able to help me.

Back to yananow.net---you will find that when you click on the mentors stories --you can e-mail them directly and they will help you.

I must admit that I am as afraid as you---my numbers are much closer to you dads than to many other people's.

I was to have my bone scan today but it was changed to tomorrow. So we will see if your dad and I have even more in common.

Ask these men and women your questions---they have a lot more experience than you or I.

Also consider the chat button above and go to the Prostate cancer page--last night people were very good to me

Good luck

---

Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery scheduled 5/23/07

Hi Sam-
I too am in the same boat as you...my precious 62 year old dad has PC. His is Hormone Refractory. He has had PC for 2 years and has so far had...lymph nodes removed(this was supposed to be prostate removal, but cancer had spread so Dr took the LN's), and an orchiotomy in Dec 06. The orchiotomy did not work on my dad. The cancer came back and spread with three tumors in the lymph nodes between the kidneys. We are in our 7th month of a Clinical Study involving Taxotere Chemo with High Doses of Vit D...DN101. My dad is responding wonderful...with some side effects..but nothing too horrible. We are supposed to finish the study the second week of June but may go just a little longer. 7 weeks ago, my dad's PSA was down to .05 and the cancer has decreased 70-85%. We hope to have him in remission this summer. The only problem-I am told it will not stay in remission..that the reoccurrence rate is very high on his type of aggressive cancer.
I do a lot of research. I have found www.cancercompass.com to be helpful. There are a couple of online oncologists that hang out there to help answer questions. One told me that we should treat my dad's cancer aggressively since he is young, otherwise healthy, and strong enough to fight this. He suggested following the chemo up with Radiation. We have an appointment this Friday with the radiologist oncologist. I am hoping we can do that and keep him in remission a lot longer.
It has not been easy...but I have a lot of faith and hope. I go to every single appointment with my dad..we are fighting this together. I help him keep track of medicines, appointments..and just encourage him and try to help with guidance on the medical end. I tell my dad to hang in there..they are working on new treatments as we speak...one day..maybe we can get a cure for our precious dads.
The only other thing I highly recommend is diet-low fat, no red meat, low milk fats, just chicken, fish, fruit and veggies mostly...and drink pomegranite juice daily. I pray that you and your dad find some medical guidance.,.to me, that has been the hardest part..knowing what is the right thing to do. I just pray and ask God to please lead us and lead the doctors. Take care of yourself and stay in touch!

Whispers, Oldfordlover, Courtney, and Susan:

Thank you all for your helpful and encouraging words. The site recommendations (e.g. cancercompass ; Don Cooley's site ) are also appreciated, I bookmarked them. It does make me feel better to hear about others who are facing similar issues as my father, especially when there are positive outcomes to report (e.g. cases in which people lived happily for many years after being diagnosed with advanced cancer). I also find the dignity and courage with which people on this forum face PC to be inspiring.

Sam

Sam, I understand what you mean, and you are not alone. My husband was diagnosed two years ago with a PSA of 120, Gleason 9, already spread to the lymph nodes. He has been on hormone therapy for those two years and feels fine, other than the side affects of the HDT. His PSA is currently less than 1.

We all need to stick together and help each other as best we can. I hope your Dad does well with his treatment.

There is a board for advanced prostate cancer survivors and their families. Go to Yahoo groups, search for the advanced prostate cancer group, go to it and join.

I am the moderator of the group so if you have any problems let me know.

I also write a blog for APC at www.advancedprostatecancer.net

Joel

Hi Sam,
Regardless of stage your input at this site can be very helpful for others, if not yourself. My current staging is pT3b. While your father is more advanced, my age, 44, PSA 19.8, Gleason 7 (4+3) make me a candidate, as I've been told a probability, to be at your fathers stage at a much younger age than he is. I maintain a window of hope and have taken the dam.n the torpedoes approach and will have completed all the traditional cancer fighting procedures by the end of fall. While my PSA did drop to 0.0 after seven weeks, my oncologist has stated that this is still very likely to come back and at that time it will be stage IV. For now, I stay positive. You have to as well regardless of the staging. Your father is blessed to have you around to keep up the hope and faith.

Good luck in your story. I good outcome is still possible. Never give up.

Tony

Dear Sam---

I've met so many positive people here
who listen and encourage. Like Tony, I have a diagnosis of T3b and a gleason 9
in both lobes. My, oncologist also told me that this cancer is likely to progress.
I'm pretty sure (ask doc) your father can qualify for a clinical trial (treatment based)or chemo where he is being treated.
Whsh your dad and you greatest success....

Veteran1