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Posted 10/4/2009 11:36 PM (GMT 0)
Thanks everyone share your experience and story. they all have very good aspect for me to consider when choose doctor. Next week will have to finalize some result.

Deeply appreciative all your post. God bless your all!

Jennifer
Posted 10/4/2009 11:38 PM (GMT 0)
Jennifer,

Good luck to you and your dear husband. Please keep us posted of his, your journey together. We are always here for you.

David in SC
Posted 10/5/2009 12:34 PM (GMT 0)
Couldn't stay away from this discussion!

Greetings all...Jennifer, I am the wife of a prostate cancer survivor. My husband's history is in my signature. As we prepare for salvage radiation treatment due to a rising PSA (albeit very low), here is my take on your situation:

As Purgatory (David), we did not interview various surgeons. The urologist my husband chose performed surgery on my husband's primary care doctor. My husband (his name is John) had a high level of confidence in the urologist, and spoke to a few men who had used this doctor to treat their prostate problems (cancer plus other issues). I offered John the opportunity to go to a "center of excellence" in New York City. Even though the cost would have been out of pocket for us, I was more than willing to pay the price to have a second opinion from one of these experts. John said "no"; he was confident with his surgeon and the hospital, and didn't want to spend time researching doctors. The surgery went fine - no problems there. The pathology (post surgical report) was not what we hoped for but the results for the next 17 months were excellent in terms of PSA.

There is such a thing as information overload, and I urge caution when researching on the Internet, especially when it comes to statistics. Every specialty (surgery vs. radiation, etc.) will have statistics to prove their method is at least at good as the other guys.

I might get a bit slammed on this one but personally I believe that surgery is the best first defense against this disease. But, please understand, that this is my opinion only, and that you and your husband seem to have all options available to you at this time (as did my husband and I).

I think it's fair to say that we would all like some type of guarantee when we decide on a treatment, a doctor, or whatever. Sadly, life does not work that way. Whatever you and your husband decide to do will be a leap of faith ... it's all any of us has. Medicine is not an exact science, and no doctor that I know of has a crystal ball and can predict the outcome. The one piece of advice I do have for you is to steer clear of any doctor (surgeon or radiologist) who indicates they can "cure" your husband's cancer. Prostate cancer, like any other cancer, requires constant vigilance and monitoring for life. A little story for you I heard yesterday from a woman who was diagnosed with breast cancer at the age of 24. Her cancer recurred 14 years later ... generally after 10 years of being cancer free, a woman would be considered "cured." If this young lady had let her guard down over the years, her recurrence might have not been treatable. So, whatever course of treatment you and your husband choose, know that you will still need to monitor his situation closely for years to come.

I wish you peace in your decision ... I think your husband will do just fine.
Posted 10/5/2009 1:27 PM (GMT 0)
Sephie,

Do you have the reuslts of the meetings with the 2 radiation oncologists yet? Been on pins and needles waiting to hear.

David in SC

Be leaving the house in about an hour for my first RT treatment. Still nervous and uncertain about this step, but off I will go.
Posted 10/5/2009 1:44 PM (GMT 0)
David, we cancelled the second rad onc appointment because we liked the first one so much and the treatment center was much closer to home (1 mile up the road!). John has his CT scan (abdominal and pelvic) plus bone scan this Thursday ... we have to be at the hospital at 8:30 for him to drink the "gak". The rad onc we chose has worked with our urologist before ... in fact, she got him on the phone while we were there so that he could "participate" in our discussions (I liked that alot!).

Once the rad onc gets the results of these tests, she will be able to begin formulating the treatment plan. The bone scan is being done strictly as a precaution as both she and our urologist feel it will not show anything (we all agreed that doing a bone scan won't hurt and will give us a more definitive idea of what might be doing on). At this stage of the game, the rad onc strongly feels the recurrence is localized and that the radiation will take care of the little buggers.

Good luck with your first treatment today ...
Posted 10/5/2009 2:06 PM (GMT 0)
Sephie, sounds like a good plan in place for John underway. The other tests are more of a formality, doubtful at best that they would show anything positive, but its nice to know you have a clean slate in those areas before you start. Are they talking about using IMRT like I am about to start?

I am not afraid physically in any way, been through much worse radiation treatment before, still not totally convinced this is needed, and especially at this time. More of a feeling of dread and darkness in my head, can't clear it out, even as I am about to leave. The clinic is less than 20 minutes from the house, so driving won't be an issue.

Hope John's rad. oncologist comes up with a sound plan for him, one that you are both comfortable with. Good luck to both of you. I will report in later today.

David in SC
Posted 10/5/2009 2:08 PM (GMT 0)
Jennifer,

I recently had nerve sparing surgery at OSU, no pathology during surgery, and will be starting IMRT in 5 weeks. May 09 PSA 5.2, biopsy May 09, gleason 3+4 right, 3+3 left, 2 of 4 cores positive, ct/ultra sound nothing, mri showed tiny possible pca on right, DRE negative.

After surgery pt 3a, 20% cancer, multiple microscopic positive margins, no lymph/seminal involvement.

16 years ago my father had open surgery with patholgy during surgery, it took hours. He did lose his nerves. He never needed any other treatment. My uncle had the same surgeon and lived 20 years without pca, before heart failure last April.

Dad's PSA 2 weeks ago: less than 0.1

It would appear that pathology during surgery is pretty important.
Posted 10/5/2009 5:12 PM (GMT 0)
420RWHP

Why OSU didn't do pathology during surgery? is that their standard of not doing pathology? or can we require a one?

thanks

Jennifer
Posted 10/5/2009 5:15 PM (GMT 0)
I am so glad that I asked question. The reality it lot different as show on surgeon's website.

we need some LUCK!

Jennifer
Posted 10/6/2009 1:06 AM (GMT 0)
I was told that doing the pathology during surgery was a source of trouble, that no one did it that way anymore, check Johns Hopkins or Mayo Clinic, I do not know about Cleveland Clinic.
Posted 10/6/2009 1:29 AM (GMT 0)
420RWHP, but everyone here who had surgery were all talking about getting their pathology report back after surgery. are they talking about the same pathology?
Posted 10/6/2009 1:51 AM (GMT 0)
He probably means that the pathologist actually examines the tissues while the patient is still opend up, to see if more surgery, or lymph node samples, or other procedures are necessary.

Everyone submits the tissues to the lab for a pathoology report, but it may take a week before it is published.
Posted 10/6/2009 1:58 AM (GMT 0)
Lymph node dissection during surgery will be checked if there is reason to suspect invasion. Usually higher PSA's and Gleason's 8 and above are the indicators for examining the nodes prior to prostatectomy. But there are some institutions that won't do it until after the RP is completed. In my case ten nodes were removed and examined and were clean. The surgery was completed and regardless my cancer had indeed spread outside the prostate. Good reasoning for "why bother". I had bilateral SVI and positive margins...

Tony
Posted 10/6/2009 2:10 AM (GMT 0)
Jennifer-
To answer some of your new posts-we interviewed two surgeons. It would have been three, but the Stanford surgeon had gone on a sabbatical and we felt that directed us to focus on southern California. We went to a University of Southern California "radical open" surgeon recommended by our in-law doctor and then to Dr. Ahlering at UC Irvine. The USC doc was nice, but as we started to ask questions, he stopped us and said, "If you don't mind, I would prefer to make my presentation to you since I have it memorized...in fact, I have a CD of the presentation I can give you...and then you can ask questions at the end." Okay..it was all fine, except when B asked, "what about a robotic assisted surgery?" He did not realize, at that point, that not all surgeons offered it. The answer was, as he crossed his arms, "I have been doing the open surgery for 25 years, and I am not about to try something new. I have the same blood loss statistics and surgery time of the robotic". When we asked about diet, exercise and relaxation exercises, his response was, "Don't do anything". This was a guy, by the way, who had a very large spare tire and did not appear to be very active. And I will share this...when we entered the elevator in that impressive glass building at USC, I looked at B and said, "I am sure of this...if Dr. XXX had prostate cancer himself, he would be having a robotic assisted prostatectomy!"
When we saw Dr. Ahlering the next morning, we asked, "Do you want us to wait until after you make your presentation before we ask questions?" His answer, "What? No..ask away!" He ended up answering all our questions (I had them written down-you must do this as you think of them before you meet Doc!) making a detailed drawing of the surgery technique, and walking the length of the campus with us to give us more time with him" In addition, it was obvious that Dr. A took good care of himself, was very fit and healthy! B was so comfortable with him, the decision was made. The connection is the thing.

Regarding lymph nodes, Dr. Ahlering does not take them as a matter of course. I had an aunt with breast cancer who suffered greatly from lymphedema after surgery, and I think it is an issue in prostate removal too (or any cancer). We do not fully understand the lymph system, but there is a school of thought that it may protect from the spread of cancer-so why remove the nodes just because they are there? I discussed this with Dr. Ahlering and he stated that he did not remove lymph nodes (the other Dr took all he could find), because he said, "With prostate cancer we are lucky in that we have PSA. One does not have to remove the lymph nodes to find out if cancer remains. All one needs is a blood test." (paraphrased from memory) I was very pleased to find a doctor that had that attitude, after all the research I had done and first hand knowledge I had of the suffering of lymphedema.

So much to consider...

Becky
Posted 10/6/2009 3:32 AM (GMT 0)
Jennifer

I am referring to what "Goodlife" said. While my father was in surgery his Dr sent an assistant out to speak with us, saying to my mother that Dad's nerves and the tissue around them could not be saved, due to the cancer having spread slightly outside of the prostate capsule on both sides. Mom told him to get rid of the cancer. Dad's lymph nodes were clear.

In his case the pathology done on the tissue removed from around his prostate while he was in surgery allowed his surgeon to locate and remove microscopic cancer that otherwise would have been left behind, as mine was.

My prostate and surrounding removed tissue were not analyzed until 3 days after the surgery. I still have the nerves on the side where a tiny amount of cancer was left. Multiple microscopic positive margins.

2 of my Dr's opined that the remaining cancer would altogether be the size of the head of a pin. However, the radiation oncologist I saw with 17 years of experience is adamant that everyone he has seen with this situation, who did nothing, was in serious trouble eventually. My local Urologist and family Dr agree.

There is a lot of information about this situation on the internet, some folks say that the blood flow to the remaining cancer cells will be disrupted by the surgery some say not. I will follow my radiation guy's advice as he has treated several men I know with great success. He advised me to have the surgery due to my age [55] and what were very positive imaging studies. He was very clear that I should come and see him if any problems popped up.

Currently my PSA is less than 0.1, radiation Dr says if I wait until it goes up, it could be too late.

Hindsight is 20/20, good luck in your endeavor to make this just a bump in the road.
Posted 10/6/2009 4:01 PM (GMT 0)
Thanks for more reply everyone!

420RWHP, I do see the importance of doing pathology during surgery. I couldn't believe now most stake the risk of leaving tiny cancer on patient. sigh....

Becky, thanks for more advise. and I am very happy for you and your husband were in good hands. good doctor do make difference. we will discuss these issue with doctor when we interview them.

thanks again!

Jennifer
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