Help Please...radiation after surgery????

My husband, history below, had RRP on 10/31/08.  One week post surgery, he had catheter removed and doctor advised he may need additional therapy - IGRT.  I said I didn't understand, and he said he thought there might have been something left behind in the fatty tissue surrounding the prostate.  I asked for copy of pathology report and received it upon checking out.  FYI...doctor was highly recommended and has performed 700+ RRP's, however, he doesn't have much of a beside personality. Full review of pathology report at home says:

"The carcinoma is found from the left mid prostate to the left prostatic base and is all Gleason grade 7/10 with extensive perineural invasion.  No tumor is found at the apex.  Primary poorly differentiated prostatic acinar adencarcinoma, Gleason grade 3+4=7/10.  Confined to left side with multifocal perineural invasion, multifocal capsular invasion, and focai extension to posterior capsule at left base posterior.  All other margins completely tumor free. Seminal vesicles are completely tumor free."

"Comment: This is a stage T2A, NX, MX primary moderately differentiated acinar adenocarcinoma, glease grade 3+4=7/10."

My husband had first post-op PSA last week and results were < or = to .1 UNDETECTABLE!

Met with doctor again yesterday, discussed incontinence issues, he advised he is right on target; discussed ED matters and began Cialis and has appointment in January for someone to get pump.  Doctor then said we will start the radiation therapy in 3 to 6 months; he doesn't start RT less than 3 months to let bladder fully heal.  He was getting up to leave at that point and I said hold on, I have a few questions.  He sat down, with a sign and a shrug (visibly and my husband said he saw this too).  I said I didn't understand why he was needing radiation therapy at this point, when PSA was undetectable and his pathology report said he was a T2A which I believed to be cancer confined to prostate.  His response was "He is a stage T3A and I think there might be cancer left behind and we don't know if the cells are dead or alive".  I said, "But the pathology report said he is a stage T2A" and his response was "Pathologists don't know how to stage properly, I have given him a stage T3A dx".  I then inquired why in his pre-op biopsy (which was done by another doctor) it said the cancer was found in the apex and mid-prostate and yet the post-op pathology report said there was no cancer in the apex but the base.  His response was "The biopsy samples are so small, it picked up a minute cell.  There was cancer in the apex but it was a very small.  Also, when they do the surgical pathology, they do not look at all of the tissue.  Now this is why we don't like patients having these reports because they try to be clinicians and they just don't understand it all."  To which I responded, "I am not trying to be a clinician, but my husband and I are trying to understand his illness, so that we can make well-informed decisions and choices about his course of treatment."  He then said to set appointments for a 3 month PSA test and one week later to discuss results and radiation.

I should mention that I have shown his pathology report to other doctors that I know outside of our local area, as well as have talked to the pathologist right after the first post-op visit (turns out he is a client of the firm I work for) and they all said my husband's prognosis was excellent, the pathology report was great news and we would be enjoying many Christmases to come together.  I asked the pathologist why the doctor would be recommending radiation therapy at this point and he said, he had one small positive margin, which the doctor would probably feel he needs a little "housecleaning" in that area.  (I did not tell the doctor I have spoken with the pathologist).

I should mention one more thing, I joined this forum right before my husband was having surgery and while I have not posted often, have read many posts by all and have heard many important comments and opinions.  Often I see others say you should have a second pathology report done by one of the experts in the US.  At the first post-op visit, I asked the doctor if he felt we should have a second pathology opinion done at John Hopkins or some other expert in the field.  His response was "It is not necessary, the pathologist who did this report is excellent and knows what he is doing."

I am so confused, upset, angry, depressed and really don't know what to do next.  It seems I am getting conflicting information.  Should I go out on my own and get forms and get another pathology report?  Should we see another doctor at one of the specialist hospitals in the US?  Am I over reacting and just don't understand this all?  My husband has aked me to do the research and ask questions because he doesn't like to do that sort of thing and as he puts it, he trusts everyone, and I outside of my family and close friends, make others earn my trust, and with the two of us, we make a good team to find middle ground.  Also, I am an accountant/auditor and it is my profession to research, find facts, test. keep professional skepticism and make conclusions based on my findings.

We have already changed doctors once because the doctor he had only did PRP, and then it turned out the doctor scheduled him with some other surgeon in the practice we never even met because he was so busy he couldn't fit him in timely and I was doing research and we came to conclusion RRP could offer better results.  My husband is my soul mate and I will go to the ends of the earth and do whatever is needed to help him and be a good partner.  So...sorry for lenth of this post, however, I wanted to share all I felt was pertinent info to get opinions and suggestions.  Please help, I am so scared.

AngelBeliever,

My condition and decision is very much similar to Les.  I do feel your Surgeon, in his opinion, is sincere in wanting to do all he can for your husband.  As Les has said some Docs believe that Adjunctive radiation is the way to go in our situation and others do not.  I consulted with an oncologist, a radiation oncologist and my surgeon who is a uroligist oncologist. The oncologist and radiaiton oncologist suggested to do the adjunctive radiation but my Urologist Oncologist thinks that he got it all and that any remaining cells may die off or were pushed to the edge as the prostate was removed from the body by the Robot and transferred to a fellow. He  strongly feels it is necassary to test every 3 months and watch the PSA very closely and if it shows any sign of reoccurence he states he will suggest to do radiation. In fairness he also is the guy who does not want to admit he failed to get it all as well. You must balance that opinion.

Now Surgeons are so busy, do not think for a minute that they will call you up and remind you 6,9 or 12 months down the road to get tested.  You need to be orginized and dont become complacent if you decide to watch the PSA.  If you forget to get tested and you experience chemical failure you could be in trouble.

I suggest you see an oncologist and a radiation oncologist even if you choose to wait.  Develop and find a radiation oncologist that you can go to if you have a problem.  If I need to be radiated it will be at another Hospital for the daily drive to where I had my surgery would be very hard to do.

I wish you all the best in your decision.

Frank

AngelBeliever-

My view is that the patient has to take charge of his/her healthcare. I had 5 "second opinions" before making my final decision and have fired several doctors along the way because I wasn't comfortable with either their bedside manner or expertise.

Your words: "I am so confused, upset, angry, depressed and really don't know what to do next." This is a very trying time for your husband and you. I believe you should do whatever it takes to become comfortable with the treatment he is receiving. In my case, it meant traveling from New Jersey to Houston because I found an oncologist in whom I have the utmost confidence and who practices in a hospital which I believe lives up to its reputation as being the best cancer hospital in the U.S.

From one accountant to another: try to leave the emotions out of it, be as analytical as you can, make joint decisions with your husband and do what has to be done. And keep a stiff upper lip - whatever that means.

Good luck It will work out.

-Les

You have been given better advice on this forum than your doctor has given you.  He sounds like far too many doctors who are out of touch with their patients.  As DJBear says, "{He does a poor job of explaining"}.

There is not a need to fire your doctor, but you do need to get OTHER OPINIONS.  He might be right, but he seems far to defensive.  It sounds like it is more important for him to be "right" than to do the right thing.  Anytime a doctor says you don't need to get another opinion, then it is time to go out out and get another opinion.

Your doctor is causing you undue problems.  He is suppose to help not hinder.  Good luck getting the answers you need.

I can't thank you all enough for your wisdom, experience, opinions and kind words. This forum is like a grounding rod for me. I am so impressed by the compassion of others to share their journey and help others. I think all of you basically have said the same thing. The pathologist did tell me the positive margin was unifocal and very microscopic. I will do as you suggest, because I believe it is the right thing to do. I will do my research, get other opinions and I will let my husband decide what is best for him, for it is his body and his cancer. You are the best and I will get back to reading this forum more often and will post to help others as well.

Angel,
I recommend a second opinion on the pathology and the what to do next, and Johns Hopkins is a great choice for both. Also I recommend an oncologist that is known for prostate cancer once that is completed. Additional treatments by HT and RT are shown in many studies to be more effective on the front end than after relapse in high rtisk patients. I have been through surgery, HT, and RT and I am doing well. My disease was listed at pT3b ~ with a note on the pathology report that indicated residual disease was likely. At first, even my prostate oncologist felt that RT was not a proven winner with my stage, but he has since changed his mind on the matter. We have also been very dilligent to test for circulating tumor cells (CTC). I have made friends that relapsed with lesser disease after surgery, but I have been so blessed to keep forging along with an undetectable PSA.

If your doctor said in one sentence that there is no need to have a second opinion on the pathology, then in another sentence he tells you that he is restating the stage because "pathologists don't do that well"...I'd thank him for his work on the surgery and wish him well. It's time for you to take control of this because this guy sounds like he is more into himself than the patients. Second opinions are very welcome to doctors who are sure of their work. A Gleason 7, focally positive margin is way too close to high risk that you should have at the very least a second opinion.

But don't panic. You have time for the surgery to heal and then in 2009 deal with the what next part. Instead, have a great holiday. And keep a positive mind set.

Tony

Thanks again to everyone. I do have a couple more questions to some of you in your posts should you check back here:

In hang-in's post he said that his case was a little different because his PSM was in the apex. I have searched but cannot find any research whether there is a difference in the areas of the prostate the cancer is in. Also, because his post-op biopsy said cancer was positive in left apex (15% of core) and the surgical pathology said there was no tumor in the apex, but the base, makes me wonder if in that pre-op biopsy someone mixed up the sample cassettes. My husband's pre-op biopsy was done by his first urologist who we ended up walking away from for various reasons, the last of which was mentioned in my post above. Any knowledge here in the difference between PC in base vs apex would be helpful.

To all, besides John Hopkins and MD Anderson, does anyone have any other recommendations of where to go for a second opinion. We are in the SW FL area and I want other opinions from outside our local area.

Sephie...thank you much. Both my husband and I have had experience with cancer before. My husband lost his first wife to pancreatic cancer 9 months after diagnosis. My nephew lost both eyes after a six year battle with retinablastoma that was dx when he was 10 months old. I lost my wonderful mom and dearest friend after her three year battle with colon cancer. Of these three, only my nephew, now 17 has been cancer free for 11 years. My husband and I have been together 7 years and only married 2, so this has shaken us to the core. Has your husband had any post-surgery treatment?

jerryg...I would be grateful for any other websites that would be helpful. I found the one in your post most informative and interesting.

Thanks again everyone for sharing.
Grace

Angel, I was sorry to read about your family's history with cancer. I lost both parents, my mother in law, 2 brothers in law and the best man at our wedding to cancer, not to mention coworkers. Everyone it seems has been touched by this disease.

My husband has not needed any followup treatment. His margins and seminal vesicles were clean, and his PSA dropped to zero and has stayed there. The only thing he needs to do - which is something every man does after surgery - is to have his PSA checked every 3 months. He will continue doing this for the first 2 years (normally the PSA is checked every 3 months for the first year, then every 6 months between years 2 and 4 - at year 5, it once again becomes an annual thing). Because of his stage and the fact that the cancer had begun to move into the capsule, his surgeon wants to keep a close eye on his PSA which is just fine with us.

When I spoke with the surgeon to discuss the pathology report, I asked about radiation treatment. Surgeon's response was essentially there are 2 ways to go: we can do some radiation to the prostate bed to make sure that we got all the cancer cells or we can watch his PSA and use radiation when and if his PSA rises. Since radiation treatment is not benign and since you only have 1 chance at radiation treatment, we chose to watch his PSA carefully and to resort to radiation only if it becomes necessary. Some men have chosen to take the bull by the horns, so to speak, and treat the prostate bed with a couple of zaps of radiation to ensure that all cancer cells are dead.

The discrepancies between your husband's biopsy report and the surgical pathology report seem to me to be a classic case of different interpretations by different doctors. Of course, the concern is always which one is the more accurate. Generally, the surgical pathology report is the definitive one because it is more extensive.

I pray that your husband's PSA is zero - and stays there forever. I pray for all the men on this board - and those who love them - that they too have a lifetime of zeros (this is the only test where zero equals success!).