HealingWell
Search Close Search
☰

Just found out and have alot of questions

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/20/2012 5:55 PM (GMT 0)
Received the results this week, not good, but not as bad as some posts on this forum. I am very glad I found this site, thank you everyone for posting on this site, the information is very helpful. The Dr. gave me a lot of information to read, web site links and setup an appointment in two weeks to review which way to go. He is not pushing any one treatment, explained all including AS.

My results; G 6 (3+3), PSA 5.5, Stage T1c, Age 56, 18 samples taken. 6 were pulled from the same section with the same results. 1 @ 29%, 1 @ 25%, 1 @ 22%, 1 @ 20%, 1 @ 18%, 1@ 17%, 1@ 8%, 1@ 2%, 4 were clear (mostly from the lower section. Upper section and right sections had the higher readings.

My apologies if I am not posting the information correctly, a little bit overcome by the news.

I have so many questions, let me start with a few. I read where a second lab should review the sides, some that have been mentioned are Epstein at Johns Hopkins or Bostwick at Bostwick Labs. Is this an easy process, do I need to be sure they will be covered by insurance? Is this expensive if it is not covered?

How do I find a second opinion? Being in Arizona I don’t have the selections that are available in NYC or Boston. Is there a good site that gives the doctors information? Has anyone found a very experienced Dr. in the Phoenix area?

I was leaning toward AS, but will as I read more, not sure which way to go. What information sites did you find, looking to do a lot of reading this weekend.

Thanks for your help,

Mike
Posted 4/20/2012 6:09 PM (GMT 0)
Mike,

You have the Mayo Clinic in Scottsdale. That's where I would be heading....
Posted 4/20/2012 6:16 PM (GMT 0)
mikeaz,

Unfortunately, welcome to the HW site. I now this seems overwhelming right now. It will be less so after you start to digest all the information. It seems you may be a good candidate for AS. The only hitch, maybe, is the number of samples that were positive out of the 18. I did not follow the math. Dr. Scholz/Lam consider havng 1/3 or less cores positive as meeting the criteria for AS -- anything beyond a 1/3 kicks it to intermediate risk category. I am sure other Drs have different criteria.

Posted 4/20/2012 6:31 PM (GMT 0)
Mike,
You have too many positive cores to consider AS at 44%. The cut off is 30%.
The Prostate Cancer Research Institute web site is an excellent source of information as is YANA. Three books will give you a pretty good picture of PC from different angles. "Surviving Prostate Cancer" by Walsh, "Primer on Prostate Cancer "by Strum and "Invasion of the Prostate Snatchers" by Scholz. Walsh is a prominant surgeon, Strum is a pathologist/oncologist and Scholz is an oncologist. If you want a radiologist's perspective Michael Dattoil has several books. This will pretty well cover all the knowledge bases and give a perspective from every field of prostate cancer.
Your Urologist can arrange to have the slides reread and sent to Bostwick or Epstien and it should be covered by insurance.
Posted 4/20/2012 7:52 PM (GMT 0)
Sunbird, Mayo is not in my insurance plan. Will keep looking but may go out of pocket if they are the best that I can find.

Sorthern Comfort & John T - Thought the percentage may have been to high for AS, I'll check out Dr. Scholz and Lam on the web.

I'll be sure to pick up the three books on the way home tonight.
Posted 4/20/2012 7:57 PM (GMT 0)
mikeaz,

Email me (in my profile) and I can give you a name for a good rad onc in Phoenix.

Posted 4/20/2012 10:29 PM (GMT 0)
Mike, most insurance plans allow you to request a second opinion. That should be one way to get another reading of your slides.

When I had a recurrence, I went to a rad onc (still in plan), who wanted to read my slides. That could be another way to get another reading in-plan.

Just some thoughts.
Jeff
Posted 4/20/2012 11:12 PM (GMT 0)

Im_Patient said...
Mike, most insurance plans allow you to request a second opinion. That should be one way to get another reading of your slides.

When I had a recurrence, I went to a rad onc (still in plan), who wanted to read my slides. That could be another way to get another reading in-plan.

Just some thoughts.
Jeff

I'm curious.....what percentage of people DXed with PC get their lab results read a second time?
Posted 4/20/2012 11:41 PM (GMT 0)
Mike in Az: email me and tell me where you live. I live in Glendale/NW Phoenix. Just click on my name and you will see my email address.
Rod
Posted 4/21/2012 1:23 AM (GMT 0)
Mike,

I am about the same age, was diagnosed in December with T1c and will have the treatment in about a week. I am in Michigan and I requested the Pathology lab at the University hospital to send the biopsy slides for interpretation by Dr. Epstein at Johns Hopkins http://pathology.jhu.edu/department/services/secondopinion.cfm. If you have an HMO, and being out of network it may not pay for it. The cost is about $280. Unfortunately, there are no good centralized databases to recommend doctors, but you may try the healthgrade.com.

and you may want to start with recommendation from patients who were treated at the cancer centers in Arizona. If I were to start it once again, I would probably see a medical oncologist first, with prostate cancer specialty. One of my consultation was with Dr. Menon Mani (Henry Ford Hospital in Detroit) http://www.time.com/time/specials/packages/article/0,28804,2032747_2033111,00.html who started the robot prostatectomy, but you can get a good surgeon in every part of the country, key being his experience (how many) and skill (how successful, by talking to patients). You should also talk to a good radiation oncologist.

There are other references you may find useful if you read my post about how I reached my decision:

https://www.healingwell.com/community/default.aspx?f=35&m=2383730

Most importantly, take your time to consult both surgeons and radiation oncologists and make an informed decision that you are comfortable with, as there are no perfect treatments.

My best wishes to you in your journey to beat this cancer.
✚ New Topic ✚ Reply