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Help! Do we need 2nd opinion

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Posted 4/11/2008 8:23 PM (GMT 0)
Finally my uncle had his appoitment with his urologist.

Gleason score: 4 + 3 =7

1 node

Started 10 days casodex then start hormone shots

That is all he suggests because it has escaped to lymph node.

Please help sad

Posted 4/11/2008 9:09 PM (GMT 0)

HI Cheryl,

I don't know anything about this part of the process but I do know that the people on here will certainly help you and keep you close. I have received the best advice and never felt left alone.

I hope everything goes well for y'all.

Cindy

Posted 4/11/2008 9:40 PM (GMT 0)
Cheryl-

Personally, I would never act on just one 'opinion' as far as PCa is concerned. And, how much confidence do you have in the path lab which examined the lymph biopsy?

I believe it is Dr. Strum who writes: "MD does not stand for medical deity".

-Les
Posted 4/11/2008 11:58 PM (GMT 0)
Second opinion? Yes. Get all his records and bring them with you. Most doctors expect you will get a second opinion. I think he may hear the same thing but it's worth the effort to find out.

Good luck,
Susan
Posted 4/12/2008 12:49 AM (GMT 0)
I agree with the 2nd opinion. In my case the 2nd opinion confirmed what we already knew, but the peace of mind was worth it. I have been on hormone treatment for nine months and it works. It has side effects, but you can live with them. be a positive influence for your uncle as well as give him a caring ear when he needs to talk.
Thanks for the post.
Posted 4/12/2008 1:53 AM (GMT 0)
There are other treatment alternatives:

Traditionally most surgeons would not suggest surgery where there's lymph node involvement, because the operation could no longer remove all of the cancer, but there are a number of studies including series by Dr Zincke and Mayo Clinic which indicate a greatly improved  prognosis where the prostate is removed, which is Dr Zincke's approach where appropriate.

 

Posted 4/12/2008 2:00 AM (GMT 0)
To clarify, for men with lymph node involvement, the Mayo Clinic treatment is surgery combined with hormonal therapy, where there is no bone cancer detected.

Posted 4/12/2008 2:34 AM (GMT 0)

Cheryl-

Your uncle's diagnosis is very similiar to my father's.  However, my father's pathology report following surgery showed one lymph node involved.  Therefore, he did have surgery and is currently undergoing salvage radiation. 

I agree with aus, there are other options out there.  Get another opinion, but be prepared to get different opinions.  We spoke with a number of specialists and a lot of my father's treatment decision was based on his post surgery PSA.  If it would have come back high, radiation might not have been an option.  However, it came back .05 therefore, based on a recent study shared by another forum member (TC Vegas aka Tony the Great) and one of the radiation oncologists we spoke with, we decided to go forward with radiation.  We are hoping and praying that any spread is localized and that the radiation will get rid of the rest of it.  A lot of medical experts will say that once the cancer gets out of the prostate, there is no cure, however, I have heard of a number of cases that have been put into remission in worse cases. 

An example, one of the radiation oncologists we met with shared his personal experience.  His father in law had three lymph nodes involved and had radiation 14years ago and has had an undetectable PSA ever since.  Will this happen for everyone?  Probably not, but I am hoping it will be the case for my father.  You have to make the best treatment for your family and don't give up hope.  If you are interested in seeing a few studies related to node positive cancer, let me know and I can email them to you.  Good luck!

Chayna

Posted 4/12/2008 11:43 AM (GMT 0)
Thanks you everyone for your quick replys. This is such a great place. Maybe one day I can get my uncle to join us.

Chayna I would love to have the studies concerning node involvement. Thank you for offering.
Posted 4/12/2008 2:05 PM (GMT 0)

AUS,

Thank you for your reply.  My cousin and I are actively trying to find doctors in our area for second opinions. It makes sense to remove the prostate anyway since it is the source of cancer.  The urologist was very firm when  he said that he would not remove the prostate because why take the risk when it cannot be cured because of node involvement.  My next question is should he get the shot next week ( I think Lupron) before we can see other doctors? Does being on hormonal therapy hinder any chance of having surgery?

Thanks again

Posted 4/12/2008 3:55 PM (GMT 0)
Hi Cheryl! If you update your profile to include your email address, I will email you the studies.  Otherwise, you can click on my email link and email me.  Just be sure and including Healing Well in the subject, because it will most likely go to spam and I will need to fish it out :-)
Posted 4/12/2008 4:01 PM (GMT 0)
I updated my profile.
Thanks again I really apprecaite it.
Posted 4/12/2008 6:55 PM (GMT 0)

Cheryl,
First I want to set the record straight.  Dotings reference to me as Great is acceptable.  LOL.  Aside from that statement from her, I have never observed any other dillusional tendancies at this site (worth mentioning).  (Thank you, Chayna.).  Now back to reality. 

For all considering radiation after failed surgery, Stanford University published a report on the use of IMRT to radiate the pelvic region versus th eprostate bed. The treatment Whole Pelvic Radiation Therapy (WPRT) vs. Prostate Bed Radiation Therapy (PBRT) showed a huge benefit in preventing relapse in a five year period.  By whole pelvic region, the pelvic lymph nodes and local tissues and organs received higher doses over a larger area.  I had WPRT treatment.  My RO only uses that method now. This practice has become widely accepted and there is a much more RO's using it.  It is  a good question to ask you RO before treatment.  The link below is from Stanford and the study is available for public viewing.

http://med.stanford.edu/profiles/radonc/frdActionServlet?choiceId=showPublication&pubid=237606&fid=4626

http://www.ncbi.nlm.nih.gov/pubmed/17459606?dopt=Abstract&otool=stanford

Tony

Posted 4/12/2008 7:33 PM (GMT 0)

TC 

Thank you so much for your post.  The urologist said that there was no way to radiate the whole pelic area.  My cousin wanted the name of RO, he gave her one but  made her feel we were wasting our time.  We live in the Philadelphia area and have many hospitals with easy access.  University of Penn just got a Proton Beam machine ( I don't know if this is something we can use) and Johns Hopkins is only 1.5 hours away.

Thanks again

Posted 4/12/2008 7:46 PM (GMT 0)
Cheryl,
My medical oncologist initially was also believing that no study supports the use of radiation at my stage as well. But he approved me to undergo that treatment. And new studies are due in the next year with better analysis if post prostatectomy, Androgen Ablation, and WPRT. The early results are disputing the idea that it is futile. My medical oncologist is back on the fence about it. When the urologist said that it is impossible to treat the whole pelvic region, was he stating that because of a pre-existing condition? Because if not, I don't believe they are familiar with the practice of WPRT. Johns Hopkins just may be the best place to discuss this. Because a lymph node was positive, I don't believe proton centers will accept your uncle.

Tony
Posted 4/12/2008 11:16 PM (GMT 0)
I am not sure what you mean by a pre existing condition. The urologist feels since one node was positive satistics show that more will probably be and you can not radiate the whole pelvic area. He just wants him on hormone deprivation. We feel we need more opions. He has started the Casodex.
Posted 4/12/2008 11:32 PM (GMT 0)
The book by Dr Myers has a wealth of information on hormone treatment, including details on this subject of additional treatments, the logic of why men have a better prognosis when the prostate is removed, and the studies by MD Anderson and Mayo Clinic.

There are a number of inclusions in Dr Myers book on the use of adjuvant treatment, including his view that Hormonal therapy alone isn't the ideal way, becauce studies show the risk of hormone-treatment resistance in the prostate is high.

In answer to your question, I would continue with the proposed hormone treatment. I know a number of men who have been doing well on it for some time: one has it as his sole treatment, as he was diagnosed with bone involvement a couple of years ago, and did not have the option of additional treatment.

Post Edited (aus) : 4/12/2008 5:46:10 PM (GMT-6)

Posted 4/12/2008 11:36 PM (GMT 0)
Tony,
I found this from Fox Chasehttp://jco.ascopubs.org/cgi/content/full/21/10/1899
It is from 2003 I believe but I think it is about WPRT. I am double checking with you before I sent to my cousin.
Thanks
Posted 4/12/2008 11:55 PM (GMT 0)
Hi Cheryl,
This might be a great time to read the Dr. Suffy Myers book "Beating Prostate Cancer: Hormonal Therapy and Diet", if he has not already. In it Myers himself was diagnosed at Stage IV, Lymph involvement and a PSA of 24, TNM was T3b, N1, Mx and Gleason was 7. He underwent Lymphandectomy in the prostate drainage region, and radiation in the lymphs he could not reach through surgery. His success is well documented. While he is in great demand, other oncologists are following his practice of triple androgen blockade or ADT3 with increasing success. Keep in mind that WPRT can be and is regularly done. I had it myself and I am quite well. By terminology "whole pelvic" does does not mean equal distribution to the entire area. But rather well aimed concentrated doses at key locations, mainly the lymph nodes. Certainly more can be done for your uncle. He certainly one valuable tool. His family is trying to help by doing their own research and that is golden. I always recommend Faith, Love and Hope as additional tools. A friend of this site David Emerson (FLHW) started a foundation by that name and he has my fullest attention and appreciation. And Dr. Myers? He is in durable remission, meaning he has undetectable disease and is no longer on hormone therapy. I wish your uncle good luck with this. You too. Stay diligent and stay informed. And Stay Positive.

Tony
Posted 4/13/2008 12:02 AM (GMT 0)
i just visited that site and that is a great document to send her. Precisely my teams point. When Stanford did this study they too had very good results. Great Job cheryl. Your uncle has a very special niece... :-)

I will put together a special post on RTOG9413.  This is  a great study.  For me, I was very fortunate to have a radiologist who was ahead of the game!

Tony

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