Where I'm At Now and Thanks

[Dayatatime]

Age 46, initial diagnosis in February 2016, PSA of 286, Gleason 9 (5+4) Stage 4 metastasized to lymph nodes. Bulky disease showing in pelvic and abdominal lymph nodes in CT scans and bone scan clean. Immediately placed on Lupron and Casodex. Did 6 rounds of chemotherapy which consisted of docetaxel while remaining on Lupron. Prostatectomy with extended lymphadenectomy performed December 2016 by Dr. Jeffrey Karnes at Mayo Clinic in MN.

3 months postoperative PSA in at <0.01 done by local oncologist

6 month postoperative follow up at Mayo Clinic <0.1 and all body and bone scans clean.

If numbers stay the same for the next 18 months getting off hormone treatment is a very real possibility.

When initially diagnosed I was told by 5 different doctors I was inoperable, including 1 from a major cancer treatment center in NY State where I reside. I was told I will be on hormone therapy the rest of my life. Through this site I found hope and resources. My first post received words of encouragement and advice directed to a guy that was scared with feelings of no direction. I found I was not alone in my thoughts. Gourd_dancer showed me even with bone metastasis this disease can be rocked. I think about him all the time when someone says it cant be beat. Patrick, Nal, Alan and Dan59 I look forward to reading anything posted as its information you cant get anywhere else. Other posts in between shared by all are a wealth of knowledge. It was where I found the video by Dr. Kwon on treating metastatic prostate cancer with a curative intent prompting me to go to Mayo. I know its to early to tell what my diagnosis will bring but where I am at now is a long way from where I was told I was going to be. That is due largely in part to this forum.

Dr. Karnes gave me a chance when nobody else would through unconventional therapy. He removed 42 nodes along with my prostate and I had no incontinent issues and he was even able to do nerve sparring surgery on one side. He gave me the worst case scenario going into it and he was willing to try. I could not have asked for a better outcome.

Never give up hope, do not let statistics cloud your head. Be your own statistic. I feel it is a combination of modern medicine, what you do for yourself and mental strength that is going to get a guy through this.

Thank you and keep the posts coming.

Ron

[Dan59]

Ron it sounds to me you are doing great through your own research ,far better than I did after accepting being inoperable,I never reached undetectable. Makes me wish I did what you did. I suppose at this time I am so happy to reach 11 years after a high Gleason stage 4 dx,and I have accepted my mortality though I continue to fight and will never ever give up. For you I pray that you will beat it and I think you will. Live every day brother! Dan

[Dayatatime in reply to Dan59]

Dan you are a true inspiration to all who know your story. Your defying the odds your own way and your knowledge gained through your own experience is invaluable. Your kind positive words have reached many. Thanks

[Dan59 in reply to Dayatatime]

Thanks Ron, I just arrived in Fatima Portugal and will pray for the group here.

[ctarleton]

So glad to hear of your Good News from the surgery. WooHoo!

That was certainly a lot of lymph nodes to have removed! Did they discuss the topic of Lymphedema as a potential post-surgical complication? Or instructions for reporting the signs of that, should it occur? (I know several women who had lots of lymph nodes removed during breast cancer surgeries, and they have a wealth of experience in that regard, sometimes lasting for decades afterwards.)

See also:

google.com/?gws_rd=ssl#q=ly...

Charles

[Dayatatime in reply to ctarleton]

Thanks Charles,

It was discussed and anything that could happen as well. I did some research beforehand and its the whole risk vs reward thing. Your body has between 500 - 700 lymph nodes and as of yet no symptoms of Lymphedema. It was all done with open surgery with the same incision a normal open prostatectomy has. My thought with cancer and the treatment that follows is your not getting out of it unscathed. Hit it hard and fast and as aggressive as your body can take. Its a tough disease that requires tough treatment.

[paulofaus]

Great news Ron. I wish you continued success.

[Dayatatime in reply to paulofaus]

Paul,

Thanks and hang in there with the chemo. Its rough but it is helping you. Between chemo and ADT a lot of cancer cells will be knocked down. Scans aren't always the best indicator either. Most of what was showing in my scans ended up being scar tissue from where cancer was. Being in the under 50 club with children definitely adds to the pressure, I'm there with you brother.

[paulofaus in reply to Dayatatime]

Thanks Ron. I haven't found the chemo as bad as I thought I would. Let's keep in touch.

[Break60]

Ron

Congrats on your successful treatment! Great to hear especially for a young guy like you. Keep on kicking it's ass!

Bob

[BigRich]

Dayatatime

Just the pelvic lymph nodes; what was the size of the individual tumors in centimeters?

Rich

[Dayatatime in reply to BigRich]

Rich as far as individual size of tumors I have no idea. I had bulky disease showing in pelvic and abdominal nodes so I'm sure it varied. What showed in my first scans when diagnosed would have been different later because chemo and ADT took care of almost all of it. I had a lot of scar tissue that developed where cancer was. I was told they would be cutting from my pubic area to base of my sternum. Lucky for me they were able to stretch the skin high enough so an incision only to my naval was made.

[smroush]

Ron - sounds like excellent progress thus far.

With respect to the hormone therapy (ADT), I was diagnosed in July 2012, also a Gleason 9 with metastases to the pelvic lymph nodes and bladder. I did not have surgery but did have external beam radiation and started on Lupron and Casodex immediately. I was on ADT for 26 months. After the radiation my PSA dropped to undetectable. I have now been off of ADT for 2.5 years. My PSA has been 0.2 for almost a year now. I am sure I'll be back on ADT at some point but am currently really enjoying the extended "vacation".

Hope you can get off ADT eventually as well - best of luck!

[j-o-h-n]

to Dayatatime

CONGRATS!!!

Good Luck and Good Health.

j-o-h-n Tuesday 05/30/2017 12:06 PM EST

[Haniff]

Wow good for you bro. So glad things are looking up for you. I am surprised they allow you to have surgery as my Doctor hasn't broached the subject with me as yet. I was diagnosed with Stage 4 metastasized to lymph nodes in October 2017. I went through 6 cycles of chemo in 2018 and now on three monthly interval of hormone shots. My PSA was 192 at diagnosis and now its hovering at 4.

Take care and my very best to you

[henukit]

That's inspiring. Thanks for sharing.

[Canoehead]

Right on, brother. A few days ago I read a long thread here by a guy saying that more than half of us will be dead within five years. Maybe, but I think his stats are old, and treatment approaches are exploding. My first urologist said we are in the wild, Wild West of PCa treatment. You and I are two who have dared to dream of being cured, and who found great doctors who made it possible to try. Might happen for us, or it might not.

But the truth is the more of us who push the boundaries, challenge old understanding, ask tough questions, and never accept no for an answer, the more the “standard of care” will evolve, and the more of us will be cured of this nightmare.

I’m having my radiation administered at a remote location, away from where my treating docs are. I see a smart, young radiation oncologist every Monday. She makes sure the program is correctly carried out and monitors side effects. I asked her yesterday what happens next after radiation is done, and she said, “I don’t honestly know - you’re into some pretty radical stuff.” I said, “Yesssssssss!”

[Dayatatime in reply to Canoehead]

Well said. It seems to me there are far to many men that trust what the first doctor they talk to tells them. I think there would be many more guys with advanced disease in a durable remission if given a chance. I think in my case it was the timing of it all. All my treatments were done within a year. HT knocked it down and then the early chemo possibly cleaned up any circulating cells. Surgery was done when PSA was at lowest point at the time and maybe got what was left. Nobody knows for sure but yes Dr. Karnes gave me a chance when no others would. The man saved my life.

It is important to seek professionals in facilities such as The Mayo. Big centers can get away with pushing the boundaries more than small hospitals and the good doctors will. Those are the guys blazing the path to curative treatment.

Ron

[Gudgelm]

I had a very similar diagnosis and treatment. The debate over surgery when there is no distant metastasis is back after conventional wisdom was that taking out the tumor or nodes would be futile in a systemic disease. I was also given a bleak diagnosis but used my skills and resources to find Dr. Karnes. I had RP and 45 nodes removed. 17 were cancerous. I had chemo after surgery and participated in an immune study (PROSTVAC). I have been on ADT for two years. My last PSA was .9. I understand there are clinical trials for RP and lymphadenectomy at MD Anderson and in Italy. The way my oncologist explained it to me was the research was "moving" toward surgery being a viable option for some patients that were not considered candidates under the conventional standard of treatment. The key is to have a skilled on committed surgeon and I don't know anyone better than Karnes. Good luck to you brother and all those who are trying to find their way treating this insidious disease. Remember that it's your personal cancer and you have to find the treatment that works best for you.

[Dayatatime in reply to Gudgelm]

Thanks Gudgelm. Without the help of Dr. Karnes I am convinced I would not be where I'm at and I thank God every day for the treatment path I took. The crazy thing is that none of it was planned, it just happened in the order it did. When first diagnosed I went with my local cancer treatment center. I had a young oncologist who went strictly by the book but she did suggest early chemo upfront as it was showing a survival benefit. I responded very well to the chemo but that was as far as they could take me with advanced disease. Through research I found The Mayo was possibly offering more and after a phone conversation I was on a plane. Dr. Karnes objective was to add 10 years to my life through debulking. I ended up with a <0.01 PSA and scans that have been clean since. I did 18 months postoperative HT and have been off it since February. Time will tell but so far so good. All my treatments were done in a 10 month period.

Stay in touch my friend and may we all find the strength and determination to defy and find an end to this disease.

Ron

[Lagovista2018]

After reading your story you have given me a lot of hope my fiancé at age 45 was diagnosed a week ago stage 4 prostate cancer Gleason 5+4 that had metastasized to his bones. Right now he is on Casodex and next week will be starting an injection I’m going to mention lupron to the doctor because that the hormone everyone keeps mentioning on this forum that seems to be successful.

[Dayatatime in reply to Lagovista2018]

He has already had a prayer answered having you to support him through this. Remember to take care of yourself too. In a lot of ways it's as hard on the ones closest to us. There are developments in treatment all the time and there will be ups and downs but don't give up. There are men on here with bone mets that have been staying ahead of this disease for years, some as many as 20. If your not with one already, find specialist in a major research facility. Get second and third opinions and your current doctor should have no problems giving a referral so insurance can cover them. There is hope and this site is a great start. There are several caregivers on this site as well that will be a great means of support. Don't be afraid to reach out.

Ron

[pakb]

I was looking- can't seem to find it so I apologize if I just missed it! What was your PSA at the time of your surgery? Was there a certain PSA that the surgeon wanted before they would operate? My husband is 15 months in, 49 at dx, GL 9, PSA around 700 to start, Lupron throughout, started 6 rounds of Taxotere one month in- now has been on Zytiga + Prednisone since ending chemo. PSA is currently hovering around 12. He goes for scans and blood work next week. We went to three Pca oncologists at the start and they all told us they would start initially with the same thing. Not sure if we should go back to the other two again now and see if they have other ideas. We are super happy with our current Pca oncologist but perhaps there are other ideas out there. My husband feels good- a little more emotional and tired- but is working and goes to the gym (plus keeps up with our three teens

[Dayatatime in reply to pakb]

Hey pakb - My preoperative PSA was .51 and the lower that number is the better localized treatment will work. That would be radiation therapy or surgery and .50 or less is ideal. I got that information from a radiation oncologist at MD Anderson who I spoke with but did not receive treatment as I chose surgery. Basically the lower the PSA when hormone sensitive the weaker the cancer is the way it is looked at. I also did early chemo and believe there is a benefit. My opinion the more that is thrown at it early in the game the better.

[pakb in reply to Dayatatime]

Great- thanks. I agree- the more earlier the better. Our pca oncologist had said something about getting psa lower before looking at other options not never gave a number. Good to know. Thanks so much again!

Polly