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Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 2:01 PM (GMT -7)   
My husband was just diagnosed last Friday. His urologist called last Friday night right before heading out of town for two weeks, so he left us with a lot to ponder and a lot to learn. The doctor my husband has been seeing seems to be one of the few Kaiser doctors that uses the DaVinci robot, and he's suggesting to take the nerve on the right side (where the cancer was found with the biopsy). We've also set up an appointment with a radiation oncologist for next Wednesday to discuss options, as well as a second opinion with another surgeon during the first week of September.

Michael will be 58 next month and is in excellent health otherwise and very fit. His PSA was high two years ago, but after a round of Cipro it came down a bit. This time the antibiotics didn't lower it from 4.4.

There were 12 samples taken in the biopsy (left x6; right x6). All was benign tissue on the left. On the right it states: Adenocarcinoma, Gleason grade 6 (3+3), involving 3 of 7 cores (95%, 90%, 30%, discontinuously). Can someone explain what the percentages mean? Are those the percentages of the sample that were cancerous?

Ironically, we were planning to move Michael to my health plan (which would give a much broader choice in doctors) this January. Has anyone here had experience with the surgery through Kaiser?

I'm kind of surprised that no other tests have been discussed to determine whether the cancer has spread or if there's anything else going on as my husband is still experiencing pain (which doesn't necessarily seem to be associated with prostate cancer).

I'm glad we found this forum as there seems to be a wealth of information and support here from you all.

Ellen & Michael

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/8/2007 2:28 PM (GMT -7)   
Hi Ellen,
The percentages are the percent of the cores biopsied that wer positive for cancer. Mine were up to 80% but after surgery the prostate was 25% involved. Don't worry about those numbers too much. While a higher number may indicate extraprostatic extension it is not necessarily always the case. I don't know what you options are with Kaiser, but I highly recommend a second opinion from a major cancer center. If you will state where you are I am certain that our team members here can suggest a location nearest you. After that you need to work with your insurance advocate to see what your options are on network or off network. I personally would not allow my insurance company to dictate that one of their doctors assigned as opposed to who I would approve. Stay calm and educate yourselves. That is your best tool. Don't be afraid to fight the insurance company. Kaiser was alway a challenge when I had them.


Tony

Pete42
Regular Member


Date Joined Mar 2007
Total Posts : 114
   Posted 8/8/2007 2:34 PM (GMT -7)   
Ellen & Michael - Welcome, you have come to a place of much information, enthusiastic support and a big dose of love from all your fellow travelers. TC is correct about the meaning of the percentage numbers. I have no history with Kaiser but would recommend a second opinion. Don't forget there are many different types of radiation therapy to consider including one that most docs never mention which is proton beam radiation. You and Michael need to take a deep breath and begin educating yourselves and becoming your own best advocate. Don't rush into anything, this pc thing is slow growing. Come to us for questions, support venting or anything else you need. Peace. Pete 
Diagnosed 1/26/07
Stage Tc1
Gleason 6
PSA 3.8
12 samples, positive in one 15%
Biopsy - 1% involvement, no bladder neck, Gleason 3+3, Tc1
Age 51
Surgery (robotic) May 4 2007 City of Hope
Final pathology - fully contained to prostate, TC1, Gleason 3+ 3
Fully continent one month
 


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 2:49 PM (GMT -7)   
Thanks, Pete and Tony. We're trying to educate ourselves on all of the options, and I've been pouring over the information here and elsewhere. We're in the DC area, so Johns Hopkins is probably the closest possibility for another opinion. I've also suggested waiting until January for any treatment, but Michael is anxious to be cancer-free quickly. In January we'd be able to switch to any one of a large number of insurance providers. Although our out of pocket costs likely would be higher than with Kaiser, we'd have greater flexibility in our choice of doctors and treatment.

Are more tests (CT scan, MRI, bone scan, etc.) normally done at this point? It seems odd that this was not a point of discussion when we were told about the biopsy results.

Thanks again for your help.

Ellen

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 2:55 PM (GMT -7)   
Thanks, Selmer. My husband's doctor is in Virginia. I found four doctors with Kaiser who were doing the DaVinci surgery, three of whom were in Oregon and the other just happened to be the doctor my husband has been seeing through Kaiser for the last couple of years. You can see the whole list here: http://www.davinciprostatectomy.com/hospitals.html Hope this helps.

Ellen

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 8/8/2007 3:13 PM (GMT -7)   
Ellen:
 
Know you would prefer not to be here, but we hope you will find much info and support from this forum.  When we had Kaiser many years ago we were not allowed to go outside of the system for treatment - this may have changed, but I do know that they will not cover proton radiation therapy.  Also, now that your husband's Pca has been diagnosed I'm not sure you could find a provider who would cover a pre-existing condition. 
 
Best wishes on your research and finding a treatment that's best for YOU.
 
Dutch
 
 
Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/8/2007 3:19 PM (GMT -7)   

  Hi  ~ Michael & Ellen,

 

A   “Special”  Warm Welcome  to  You!   yeah  

 

We know ~ we can “all” make “Your Journey” smoother just by being here for you! 

This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...  It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!  Keep posting.... OKAY!!

  

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

 

Keeping you close in thoughts and prayers as you move forward…

In Friendship ~ Lee & Buddy

 

“God Bless You”

It's a little prayer  ~  "God Bless You" ...but it means so much each day,

It means may angels guard you and guide you on your  way.

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)

Prostate Cancer Resources, Helpful Hints, and Topic Thread Links

 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/8/2007 3:22 PM (GMT -7)   

  tongue Hi ~ Ellen & Michael,

 

Thank you for joining us!!!   This journey is best traveled with friends… 

Your 1st thread is perfect… Sharing information so we can learn where you are at the beginning of your journey… 

 

You mentioned that Michael is experiencing pain… can you share more with us??

 

Also ~ I was very concerned and wanted the other tests ordered but our urologist stated he did not order the extra test on a routine bases.  He looks at each case separately and felt we did not need them.  He stated he would order them if it was something we really “needed” to settle us.  We went with his decision!  He did mention that he had just sent another young man 48 for further testing….

 

Isn’t it amazing how fast the responses are here!!!  I saw your name at the bottom…when I signed on at 4:45 when I was getting ready to shut down for supper…I said to Buddy…hhhhmmmm I wonder where she’s headed.  I’m glad you found “All of US”….  Welcome…

 

In New Friendship ~ keeping you close as you continue to find your way…  Your stepping-stones are secure with many helping-hands here on “OUR” forum.

 

You will be in our thoughts and prayers as you move forward.

Hugs from Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 3:25 PM (GMT -7)   
Thanks, Dutch. Yeah, if you had asked me even a week ago, this would have been the last place I'd ever have expected to be posting. Definitely don't want to be here, but glad that I am, given the circumstances.

I do know that Kaiser is very strict about using their doctors and there have to be extenuating circumstances for going outside. I think if my husband felt strongly about it, we'd wait until we moved him over to my plan in January. I'm lucky in that I work for the government and can bring him over to my plan during any open season at the end of each calendar year. (It would just be a matter of switching from single coverage to family coverage.) We had planned for this year to be the time we did the cutover as his plan gets very expensive once he retires next summer. I can also switch to any one of a large number of insurance plans during open season. Right now I'm under Blue Cross / Blue Shield, which I like since I have the freedom to choose pretty much any doctor and facility. With an open season change of any type, any pre-existing conditions (thankfully!).

Post Edited (Michael's Wife) : 8/8/2007 4:29:07 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/8/2007 3:35 PM (GMT -7)   
Ellen,
You will probably be directed to a bone scan next. It should have been done as mine was-the next day. Simple procedure and takes a half an hour or less. But the procedure will take a morning as they inject an isotope first then have you come back in a couple hours. Some do CT and MRI but not all and it's arguable as to the value of those tests pre-operatively. I just answerred a link today for "mariateresa" here at healingwell so go look at that for my personal experience with the robotic procedure. My advice would tell you that you want a surgeon that has hundreds if not over a thousand LRP's under his belt. My first urologist wanted to do the procedure without the robot and almost had me convinced. That was until I saw his experience level compared to the man I chose. Not even close. And I think that's why I had little trouble with the surgery. JH is a great cancer facility and have two awesome surgeons. In addition perhaps the country's best PC pathologist is there as well. I live in Vegas and made sure he saw my post-op slides. You need that second opinion.

Tony

Post Edited (TC-LasVegas) : 8/8/2007 4:40:45 PM (GMT-6)


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 3:37 PM (GMT -7)   
Thanks, Lee! Yes, the responses here are amazing. I'm so glad to have found this forum.

Michael says he's had low grade pelvic pain. He's not really had problems with frequent urination, etc. The doctor said his prostate was 60 grams and irregularly shaped, if that helps at all. He also was told about two years ago that he had some calcification of the vas deferens; I'm not sure if that's related at all.

One little piece of information that we never knew until today: Michael's dad had surgery for prostate cancer and also had a testicle removed a number of years before he died of heart disease.

Thanks again for the warm welcome and information. This place is great!

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 3:41 PM (GMT -7)   
Thanks, Tony. I appreciate all the info.

We'll keep you all posted.

Ellen

Pete42
Regular Member


Date Joined Mar 2007
Total Posts : 114
   Posted 8/8/2007 3:42 PM (GMT -7)   
Ellen - You will find that a lot of men on this site waited a good bit of time between diagnosis and surgery ( I waited 5 mos.) Probably At the very least  its going to be at least two months from now. I agree that the more surgeries under the belt the better (but you havent even talked to a radiation onclogist yet! maybe you'll opt for that) Remeber you have time to make an informed decision.

Diagnosed 1/26/07
Stage Tc1
Gleason 6
PSA 3.8
12 samples, positive in one 15%
Biopsy - 1% involvement, no bladder neck, Gleason 3+3, Tc1
Age 51
Surgery (robotic) May 4 2007 City of Hope
Final pathology - fully contained to prostate, TC1, Gleason 3+ 3
Fully continent one month
 


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 4:27 PM (GMT -7)   
Thanks, Pete. I think we're progressing from the initial state of panic and realizing we have a bit of time to ensure the right path is chosen.

mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 8/8/2007 4:33 PM (GMT -7)   
HI Michael's wife. Sorry you have to be here but glad you found this site. There is a lot of good advise here and a lot of experience. If you can get your insurance settled to get a better Dr. tha would be a consideration. JH does have a good reputation and I considered them before I decided on Duke University. Study all the information out there, be sure to get a second opinion and if you decide on surgery find an experienced surgeon. I don't want to support any one treatment but get informed, make that decision, and don't look back. You have the rest of your lives to look foward to. Good luck and God bless you. Keep in touch.

Mika-mvesr

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/8/2007 4:38 PM (GMT -7)   
Thanks, Mika. Duke would be within a reasonable distance as well. I've also been scouring the website for the Radiotherapy Clinics of Georgia. (What did we all do before the internet?!)

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/8/2007 4:49 PM (GMT -7)   
Ellen,
There are several cancer centers that do many types of treatments at that center. These centers will discuss with you the different options without bias. Most here will agree that a radiation oncologist will reccomend radiation while a surgeon will reccomend surgery regardless of the stage and gleason. If you are getting a second maybe consider a center that has all the options. Get the team together from radiaology, surgery, and the medical oncologists see what sounds best for you. You may require all options and the order matters. For me it was surgery first, hormone treatment second but adding radiation. My decisions and recommendadtions to me were based on my age and stage of the disease. It took a quite few visits and alot of study for me to decide which I was comfortable with.

Tony

AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 8/8/2007 6:22 PM (GMT -7)   
Hi Ellen & Michael,

I just wanted to welcome you to the board. You got some fabulous feedback and I don't really have much to add.

Best of luck to you on your journey. May Michael have a quick and speedy recovery.

AEG
(it's Alexa from the other board)

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/9/2007 2:07 AM (GMT -7)   
Alexa -

Thanks so much for pointing us here! Very much appreciated.

Ellen

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/9/2007 2:17 AM (GMT -7)   
Tony -

You're absolutely right. I learned from my own experience years ago when 5 out of 5 surgeons told me my only alternative for a problem I had was surgery, when in fact a much less invasive procedure performed by a an interventional radiologist sufficed and was the right choice for me. It was a real eye-opener. Some surgeons wouldn't even tell me of the alternative, while others used scare tactics to try to dissuade me. It was really disappointing, but I learned a good lesson.

Ellen

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 8/9/2007 9:16 AM (GMT -7)   
Hi Ellen,

Gee, I 'm sorry about Michaels diagnosos but we're so glad to meet you. If anyone can help ya'll through this process, this is the group to do it. Welcome aboard.

Michael has been told he will probably have one side of his nerves taken if surgery is his treatment mode. That's for a good reason. There are 6 cores from that side and 3 were positive, 2 greater than 50% and none were in a row (discontinuously). So far, I like the Doc. He hasn't given you any false hope on saving the nerves on that side because all indicatins say it isn't a tiny cancer. The risk of cells having escaped into those nerves is too high to play what if, with Michael.

The upside to the diagnosis is its 3+3=6 pathology and a less than 10 PSA. Even better, its less than 5!! Michaels PSA is 4.4. This is likely the reason for not asking for any further diagnostic testing. about 1% of men will have positive lymph nodes. Most remain contained upon final examination. A very good thing! A bone scan or CT won't tell them anymore than what they already know at this point. If Michael were much older or his Gleason was a higher 7, the Doc would be doing both a CT and a scan. The risks will have change then.

A second biopsy pathology would be the one thing I personally would insist on having done. I like a second pair of eyes confirming the biopsy. Different eyes sometimes see different things...note, I said "sometimes". Pathologists seem pretty uniform. There should be a good prostate pathologist at either M.D. Anderson in Houston or at Loma Linda. The cost is about $300. Jonathon Epstein at John's Hopkin's was our choice. He's supposed to be among the world's most respected prostate cancer pathologists.

If Michael has to have a nerve removed, consider asking IF a sural nerve graft is possible at the time of surgery. Kiaser may or may not pay for that. It requires pre-planning. Paul (my DH) had a surgeon on stand by in the event they had to take a wider margin on one side. Didn't need it but we did prepare. Sural grafts take a long time to start working but they're getting better and better since their introduction 4-5 years ago. Another reason to begin viagra right after surgery!!! Sural grafts are having better outcomes now.

Don't know much about Kiaser except for a few people who went to City of Hope for their surgery. Seems everyone complains about everything except the physical (including surgery) care itself. Guess there's at least one good thing. Care is what's most important. If you find an amazing surgeon who does either open or traditional lap, don't hesitate to use him/her. I'd rather use a surgeon whose done 1500 opens than a robotic asssit surgeon whose only done 50. Good Luck to both of you and take your time while Michael heals up. You have a few months to make whatever happen.

Swim
 


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/9/2007 9:33 AM (GMT -7)   
Swim -
 
I can't tell you how much I appreciate your post.  You really helped me with the answers to many of the questions I had been asking myself.  Thank you!
 
Ellen

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/9/2007 10:44 AM (GMT -7)   
Hi Ellen,

You've been getting great advice in this thread about carefully considering treatment options.

You probably have a lot of Internet bookmarks already, but here is a government web site I found particularly helpful:
http://www.cancer.gov/cancertopics/prostate-cancer-treatment-choices

If you use the "Next Section" links at the bottom of the page, you will be taken through the technical description of the disease, including things like "staging," and provided with good information about treatment options.

My doctor is a cancer surgeon, but my doctor asked me to consider talking to a radiation oncologist as well.

Personally, with my age and staging, I wanted the deep pathology of the prostate that post-surgery allowed, so radiation therepy was second-tier for me.

I have wonderful friends with similar symptoms to mine that made different treatment choices and we're all satisfied thus far.

I sought out opinions from other doctors as well.

Your decision will be the right one for you and your husband.

All the best to you!

Idaho
 

Post edited to activate link…. 

Post Edited By Moderator (bluebird) : 8/9/2007 9:04:33 PM (GMT-6)


Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 8/9/2007 10:58 AM (GMT -7)   
Hi, Idaho. I printed out that entire document on the website you suggested the other day. You're right; it has lots of good info. Also, we had the same experience with Michael's surgeon as you did with yours in terms of his suggesting we consult with a radiation oncologist. We have that appointment set for next Wednesday. Right now I think we're both leaning toward surgery as the preferred option, but we're checking out all the treatment choices.

Thanks.

Ellen

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/9/2007 1:40 PM (GMT -7)   
Hi Ellen,

This is another site I just found that may be helpful to you. You can see all the treatments, doctor experiences, and survival rates for each treatment.

www.prostate-cancer.com   (remember to use the dash between "prostate" and "cancer")

The site presents a very nice matrix of all treatment options in one page and you can "drill down" into details.

Some functions of the site are not completely working yet, but the treatment info is there and working with a nice summary. I particularly like the news link.

Also, I found the web site busy at times and it took a second try or so to get it up and displayed.

Cheers,

IdahoSurvivor

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one node, <5% volume
Surgery (robotic): 31 Jul 2007, saved nerve bundle on side of non-cancerous node
Hospital stay: 2 days
Final pathology: Tumor confined to prostate, T2a, 3+3=6, <1% volume
Working to get back into good shape
Waiting for that first post-op PSA

 

Post edited to activate link…. 


Post Edited By Moderator (bluebird) : 8/9/2007 8:55:46 PM (GMT-6)

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