New here

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

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 

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

  Hi   ~ Michael & Ellen,   A    “Special”   Warm Welcome   to   You!       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  

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)

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!

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.

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

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

Alexa -

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

Ellen

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

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 descript ion 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)

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)