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Gleason 9- Help choosing Rad, Onc at Cleveland Clinic

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Prostate Cancer
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Posted 8/30/2011 3:06 AM (GMT 0)
Hi Everyone,

I wanted to start by saying that I have spent the last four weeks reading all of the various strings on this website. I am touched and humbled by the strenght and goodness that I've seen in everyone and your wishes to help each other. I wish you all the best and will keep you in my prayers.

Despite being in my mid-thirties, I felt like a five year old when I learned my dad had Gleason 9 PC. I want the very best for him and I have spent so many hours reading and learning from all of you. We have made decisions and are going with long term HT and Radiation at the Cleveland Clinic.

Dad mid 74, has had PSA around 4.0 for the last six years. In 2007, he had biopsy that was clean. In July 2010 he had PSA 4.1, in April 11 PSA was 6.2, doctor said do antibiotic comeback in 8 weeks, in July 11 - PSA went to 8.2, Biopsy - August 11 turned up Gleason 9 only in left lobe about 16% of entire tissue taken and 30% of left lobe. Already tool Lupron shot and casodex 9 tables orally. No symptoms, Catscan clean, two opinions said no spread to seminal vesicles or lymph node. Urologist says unlikely spread, diagnosed organ confined. Partin charts say 15 % chance of lymph spread and 30-40% chance outer side of capsule. Dad has many doctor friends (radiation oncologist) and sent for third opinion too, most say early it seems very early and agree catscan and bone scans are clean.

We know how we want to proceed but I want Dad to have the best doctor possible, does anyone have suggestions for radiation oncologists at the Cleveland Clinic, I know you mostly can't go wrong there because it is one of the best institutions but as any daughter feels nothing can be best enough for her dad. Looking at Dr. Stevens, and Dr. Tendulkar?

Thank you all, I wish you the best and I will keep you all in my prayers. Much love and respect, daughter with the best dad ever
Posted 8/30/2011 3:27 AM (GMT 0)
I can recommend Dr. Stephenson as an oncologist who in turn I would trust to recommend the best radiologist, and follow my progress. He was one of the authors of the MSK nomograms. I think he is a really down to earth guy who has been a help to me as I considered RT.

Good luck to your Dad.
Posted 8/30/2011 3:48 AM (GMT 0)
I can''t answer your specific question, but good luck to your dad and you. There are a bunch of daughters here at HW that look out for their dads.

Please keep us posted on his situation.

david in sc
Posted 8/30/2011 4:53 AM (GMT 0)
bestdadever,

I am so sorry that your father got this dreaded cancer. My heart goes out to him and your entire family. My father had his surgery when he was 68, was in excellent health but was a Gleason 6. He had a great recovery and has had many great years, he is now 86 and starting to slip. He had a radical prostatectomy. He was kind enough to pass those genetics to two of his sons, unfortunately I was one of them. First, do you have any brothers? If so, have they recently had their PSA checked? If not, you know what to tell them.

Most of us have no medical training and are not doctors. However, there is collective knowledge of this forum and ceases to amaze me. Is your father in good health? Could he withstand the realities of a radical prostatectomy? What are the genetics of his family? Will he live another decade, two decades if he got rid of this disease? All of this factors will influence the treatment options.

Do you have Dr Patrick Walsh's book Surviving Prostate Cancer? If not, I would highly recommend it as required reading. There are other great books, videos, articles referred to at the first of the forum discussion that may prove to be helpful in your quest for knowledge.

Sorry I don't know of any Doctors in your area, but someone will and will be generous with their experiences and recommendations.

I have four amazing daughters that have spent countless hours researching prostate cancer and are very involved with my treatments, recovery so I can be alive to enjoy grandchildren for the next two decades. So congrats for worrying so much about your Dad. You must be a true blessing in his life.

We will all hope that you find the best team of doctors in your region, and they develop a success plan to and will eradicate this nasty cancer from your father.

Best Wishes
Posted 8/30/2011 4:57 AM (GMT 0)
Dear Goodlife,
I actually and cut and pasted Dr. Stephenson's bio. The urologist mentioned him too but somehow it means much more coming from somone in the same shoes. Thank you for your post. Wish you all the best!


Dear David in sc.

Thank you also for your message. I appreciate it. I am overwhelmed at the amount of kindness on this website. It has helped me so much in dealing with my feelings here that when I am talking to my dad I am strong. Thank you for your well wishes and I will keep you in my prayers as well. I wish you all the best.

THANK YOU BOTH!
Posted 8/30/2011 5:12 AM (GMT 0)
Dear Devastated,

I can tell your daughters probably would have the same screen name as I do. We all think are dad is the best dad ever and I believe we are all right!

Thank you for your message and information. My dad is a heart patient and god willing has outlived his family. We have decided radiation is best for him. Both he and my mom feel strongly that he should not have it. Btw, dad is a doctor who treated blood diseases and breast cancer himself but when I told him about this forum he said please ask and find out what others think.

Doctors keep saying it is so early, they will get it with radiation. As happy as I am to hear that the unknown scares me but we have made peace with this plan. I guess since Radiation is his only first line and I have read of cures I am trying to find the very best radiation oncologist.

Thank you for reaching out to me, it means so much to me. I wish you the best and much time with your grandchildren. I will keep you in my prayers, thank you for the advice and take care,

daughter w bestdadever
Posted 8/30/2011 4:30 PM (GMT 0)
The best doctors won't operate on men over age 70.   Walsh says he will if you bring both of your parents to the consultation!

Radiation is as efffective as surgery and actually better than surgery when the PCa is locally advanced.   I had IMRT and HDR brachytherapy and have done well.   He will do well also.

It would help to add Jalyn (Avodart and Flomax)to the mix.   My docs add it for all PCa patients when they choose radiation.   The Avodart portion reduces DHT (the very strong testosterone) and reduces the prostate size to make it a better target for radiation.   The Flomax portion will assist with any urinary side effects, which you can expect during the radiation.   I found that increased uregency and frequency of both urinary and bowel movements were the main radiation side effects I experienced. 

We wish him well and are glad he has you to help.

Jack

Posted 8/30/2011 5:15 PM (GMT 0)
Thank You Jack,


I just cut and pasted your post and send it to my dad. He is good with email, not so much searching the web but I know his next steps will be to ask about Adovert and Flomax once he reads your message. Thank you for telling me your experience and that you chose radiation. We are trying to figure out the best treatment and that really helps. I'm so happy you have done well and wish that you continue to do so. I will keep you in my prayers. Thank you for taking the time to write. Each time I see a new reply and especially one that says surgery isn't the only way to go it makes life seem more normal. We are just getting off the roller coaster and starting to get back to life and looking forwards to getting over this time. Thank again, wish you all the best.

sincerely,
daughter with the bestdadever
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