Go Figure

[Number1gland]

Go Figure. After completing a bone scan & ct scan Thursday I was told I have advanced prostate cancer that has spread into a couple of near by lymph nodes. Gleason score was 7 and psa is 32 and they found cancer in all 12 samples taken on biopsy. It's not to my bones yet. All the statistics I've seen say I only have two years to live. I'm 56 and in decent health and urinate without any pain or blood. Would Provenge be right for me right now or do I do the hormone treatment first as my oncologist suggested. Pretty scared thinking I only have 2 years left when I don't feel any pain anywhere.

[MichaelDD]

Don't sweat the statistics! Many are living many years after being diagnosed. Look at the Advanced Prostate group here in Healthunlocked. Alot of folks with alot of answers!! My bet is your here for many more years! Read and learn. Journal your questions. If you can't find an answer ask!

[Number1gland in reply to MichaelDD]

Thanks for the advice. I got so many questions I don't know where to start. I guess I'm still in shock.

[Hidden]

2 years my ass. Don't even starting believing that BS. If i listened to those "stats", i would have been dead 2 years ago. Suck it up, roll up your sleeves and get busy living. It takes more work but you can live a good life for years to come. Good luck to you.

[Number1gland in reply to Hidden]

Thanks. I'm starting to see now I need to stay away from stats right now.

[billy1950]

I agree with the other two men! Be proactive and do some research and possibly even get another opinion concerning options! And take a day at a time! Look into diet options as well! And this...I don't believe doctors need to tell predictions about life span. Every person's body is a unique as well as a "gift".

Peace,

Bill

[Number1gland in reply to billy1950]

Thanks Billy. I never have been able to force myself to eat right. No it looks like I'm going to have to. It's been kind of hard to do being single and working all day then coming home to an empty house. I don't feel like cooking and it's hard to cook for one.

[billy1950 in reply to Number1gland]

Single as well...however, I am slowly going towards more fruits and veggies...the ideal as some would say is a plant- based diet...as I say that would be "ideal"...Youtube has some interesting videos about diet and prostate cancer...

Again, take it one day at a time!

Peace,

Billy

[LVRob129 in reply to Number1gland]

Not sure where you live, but I found some food delivery services that will deliver pre-,made meals weekly. Average cost is about $10/meal and its good. Vegan options available.

[Number1gland]

Thanks. I'll be looking into this. I'm going to need some support. I know that already.

[Number1gland]

Thanks for the input. I'm already seeing that I can't believe everything I hear. I'm going to start with the web sites you all mentioned to find more support and do more research. I live about 25 miles North of Cincinnati and I've only been able to find one support group but I'm going to keep looking. Thanks again for giving it to me straight.

[Tom19 in reply to Number1gland]

Trust me...research and then research some more. It has made all the difference for me and how I look at things.

[Number1gland]

Thanks for your suggestions Joel. I wish I did live closer to NYC because I'm having a hard time finding a face to face support group close to my house. I'm going to keep looking though. I'll ask the docs about Firmagon. Is it one of the better drugs to take? That is if any drug is good to take. Thanks for the web sites. This really sucks but I guess it's time for me to accept it and go from here.

[gamma909]

In addition to the excellent feedback you've gotten from the group, I'd encourage you to find a medical oncologist who knows a fair amount about PCa. I met with a urologist and radiologist and while helpful, they are focused on how their treatment will work rather than understanding my cancer. On the other hand, the oncologist set up my mpMRI (which has been very useful) and a Decipher biopsy test that has not come back yet. The more information you have, the more informed your decision will be, albeit a difficult one. I am leaning towards surgery and expect to make a decision, in conjunction with my oncologist, later this month - my in-depth research really helps. I see the decision as building confidence given that there is little certainty. In addition to treatment, a positive outlook and healthy lifestyle should help. I wish you all the best.

[lillyofthevalley37]

Stephen Fry had the same as you he got it removed

they had no right to say that to you surely

[Number1gland]

Right now I'm a little disappointed with myself & Cleveland Clinic. I chose the clinic because after research I found them to be the best place to go within my reach. (it was still a 4 hour one way drive) I went there because I was feeling things that I thought were related to pc. Thank god they were not related but after meeting with an urologist/surgeon I was sent to the cancer center to meet with an oncologist. I first told him that I wouldn't be able to keep coming to Cleveland for treatment and ask him if he could refer someone closer to my home. He only spent about 15 minutes explaining to me what I had and the treatment I was going to need. No options were ever mentioned. Then he said he was going to set me up with some oncologist at the University of Cincinnati Cancer Center and they would be contacting me. This was on the 2nd of August so on August 7th I hadn't heard from anyone so I emailed him through mychart and he said they would be getting a hold of me by the end of the week. Well it's Friday the 10th at 12:30 pm and I haven't heard from anyone. I don't know if it's just me or not but I thought by picking the Cleveland Clinic as my first visit they would be a lot more informative than they have been. I guess I got to just get the phone book out and start looking for an oncologist and any other type of doctor I think I should be going to see. I'm praying this pc is as slow growing as everybody seems to think. I just don't really know where to start looking around here and the impression I get from the clinic tells me to just say F*^K It and don't do anything because I don't have any symptons or feel any pain at all. I'm still confused and lost.

[kayak212]

Fellow Cincinnatian here although i now live in Georgia. There is an MO in Fairfield..Dr.Paula Weisenberger who i am somewhat familiar with because a close friend of mine was her patient when he unfortunately had Small cell carcinoma. His cancer was considered to be fatal when it was discovered and he did pass away not long thereafter, but not before Dr.Weisenberger undertook an intensive effort to help him via Chemo and she did it in conjunction with a Dr in Boston whose name i obtained from this website and who worked with my friend via televideos between her and Dr.Weisenberger. I will send you her contact info in case you want to contact her and arrange to see her. I dont know what happened to you with Cleveland Clinic, but i have been going to a Cancer Center of Excellence in Georgia for 7 years, but it always seems to boil down to the specific doctor/s you deal with and they arent all wonderful for sure! You find early on, or at least i did, that you have to educate yourself with help from wonderful sources like this forum and others, become a pain in the butt advocate for yourself like i did, constantly keep up with what is developing in the area of your disease and learn how to be the final decision maker for your case and your life while carefully considering the source of the recommendations, treatment plans etc being offered to you.

I hate to have to say this but i have learned to place more faith in the feedback, opinions and expertise of specific people i have met and learned from in this forum than i have found i could in the doctors i have had,even though they were all good docs i vetted as carefully as i could when i selected them. Sorry to say but in my opinion i have never met a doctor for my PCa who i didnt feel was making his/her recommendations primarily from their own biased perspective and i dont even mean that as a criticism, but simply as a human condition . I lived in Cincy for 60 years and felt that the medical community in general was top notch, but i didnt contract PCa until i lived in Georgia so i dont have any personal recs i can offer but the one above which is also second hand. I will do some more looking etc and get back to you if i can suggest any others ,but Im sure they exist .

I know there is a PCa support group in Blue Ash which considered joining at one point ,but didnt it wasnt practical, however, im sure you could Google it and find them easily.

Hang in there,bud! Your fight is far, far from over!

[kayak212]

Number1gland.....I took a look around the internet to find well regarded MOs specializing in PRa and to be honest with you i didnt find any i would personally consider using without a lot of checking out their credentials etc. That included the Christ Hospital although they won an award for Americas Best Cancer Hospital in 2023. Didnt even list MOs specializing in PCa unless i missed it which i doubt. Also looked at the Univ of Cinci Cancer Center..513-585-8333....would be worth a call to find out more because i know they have good rep but their website isnt very informative. Dr Paula Weisenberger who i mentioned in earlier post ....3050 Mack Rd.Fairfield.,Oh...513-896-6940....she is 75 years old...and heavily experienced, but Im not sure i would consider her although you might make appt to see her, discuss your situation, see how her experience meets your needs or not..she is affiliated with Cleveland Clinic....and then decide. But you might get a rec for someone else from her that would be worthwhile.

Sorry i couldnt come up with someone i could suggest....there are MOs in Cincy for sure but i honestly didnt find many whose areas of experience even listed Prostate Cancer.

If you can Id that Blue Ash PC group which meets regularly they would probably have some good recs for you re a top notch Mo.