Just Venting

Sorry to hear this, you have done your best and that is all you can do. Stay strong and don't let anything get you down.

Please vent whenever you feel like to, we will be here to listen.

The scans show nothing until a real problem is there. They do not show there is no cancer, they just show it is not yet detected. I wish more doctors would be clear about that. G9 with 8/8 is very high risk, as you certainly know. I question surgery based on my uro and med onc assessment when I was 12/12 and G7. All the predictors/nomograms indicated a very high probability (>80%) it was out of the capsule and that surgery wouldn't cure. My uro would not operate and the med onc agreed. They took me aggressive with ADT3, IMRT and HDR brachytherapy and I now question whether Taxotere should have been added to the mix. So far nearing 2 years with <.1 PSA, but I know my probability of recurrance down the line is very high.

Knowing what I know now, If I were your husband, I would be at Dr Myers' office first thing tomorrow morning. I will go out on the line and contend that a doctor that is a supposed "expert" that sees a 8/8 and G9 that is not bringing in a very strong med onc is entering the realm of malpractice. That is certainly what my docs would contend.

Understand your predicament, but don't give up. Record everything the uro says especially when he says no need for additional tests or additional opinions especially from a med onc. Let him know you are recording such advice and he might become a lot smarter.

Best wishes,

Jack

I read and respected your vent, free to excercise that right here at HW, many of us have done that a time or two

I even see and agree with many of your points

However, he is an adult, and its his body. the best thing to do at this point, in my opinion, is to support his decision, stand by him, and hope and pray for the best. Regardless of what route was chosen, no matter what doctor was picked, there aren't any promises or guarantees when it comes to PC.

There are guys here, that did everything you suggested, and still had lousy outcomes, and other guys that picked the first thing that came along, and are doing just fine. Just so many variables and factors associated with PC.

I hope he does great, personally. If not, he will indeed need additional treatments.

David in SC

I would always argue that the wisest course of action is to investigate every treatment options, especially when dealing with an aggressive, high risk case. On the other hand, no one deserves to be "berated" on an internet forum, and I would walk away from, or put on "ignore" anyone who approached me with that attitude.

Helpful suggestions are great. Berating someone is uncalled for.

I wish you and your husband well. Whether he stays with his current mindset or decides to investigate other options, you have my best wishes.

My husband knew from day one that he wanted surgery, and that is what he is scheduled to get. I believe what happened is that he got his cancer diagnosis from a urologist that he knew and trusted, and that urologist, as a surgeon deliniated the benefits of surgery and the pitfalls of radiation. Because this talk happened when my husband was shocked and vulnerable, I think that it had a strong influence on him.

My husband is getting surgery from a different urologist than the one who diagnosed him - he is going to a highly regarded NYC surgeon. He did talk to two radiation oncologists (I insisted and he was open to it) but opted for surgery.

I felt that the decision about what treatment to get should be my husband's and that the decision of a surgeon should be his also (although I did tell him which surgeon I preferred). He ended up chosing the surgeon that I wanted him to use, but it was because of the recommendations of doctor's that he respected, not just my input.

I do think that my husband chose the right treatment for him. He had an MRI today and we meet with the surgeon on Wednesday. My husband's surgeon always does an MRI so it was not up for debate. If the surgeon tells him that the MRI shows that the cancer is not contained in the prostate, we will have to reconsider his plans though. I will add that one of the surgeons that we consulted with (not the one we are using), who was a top surgeon at MSK, felt that surgery was valuable even if the cancer was not contained in the prostate.

You have done all that you can do. You can suggest but you cannot force someone to do something. It is his body and ultimately his decision. The only thing that you can do is support your husband. I wish him the best of luck in his treatment.

I hope for his sake he is going to be continent after all this, that is a big deal for anyone to deal with on top of PCa. Myself would not recommend surgery and I was denied surgery by Dr. Menon because I had comparable stats back in 2002 and 12 of 12 biopsies 80-95% in every one of them. Surgery can be done to debulk PCa tumor burden and might do even more than that, but nomograms should be discussed and via the uro-doc having done such homework for the patient. Best to you in recovery and healing in this.

No question that it's hard to figure out what reasoning goes into a decision like this ... emotion ... facts ... hope.

Stats are just stats. Let's hope that he's on the right side of those stats. Someone has to be. Why not him? Best of luck!

Thanks everyone.  As I said, there will be no more tests before the surgery.  I'll have to try to convince him and the doctor after.  I am certain that we won't have clear margins.  Doc already told us that he won't be able to use nerve sparing techniques- he will also be taking lots of pelvic lymph nodes.  Hubby feels that this is what is right for him so I'm being supportive while still sharing, when I can without pushing too hard.  Down to one week now.  Each day seems harder and more nerve wracking. 

Surgery will not hurt your husband, but may be an extra step in hs treatment plan. With a Gleason 9, many doctors will automatically recommend radiation after surgery, and maybe even HT.

I also am a Gleason 9, and had surgery, although I didn't have the high volume of PCa your husband does.

I made it for 3 years until my PSA climbed back to a .06. I then had radiation.

Unfortunately, with a Gleason 9, there aren't"t a lot of correct answers. The nomograms don't give us very high odds of long term survival.

I would say go with your husband on this. Let him be in control. As I said, the surgery won"t hurt him, but will be a little painful. Will also leave him incontinent for several months most likely, and will change your sex life forever.

Good luck. The next several years will be a series of decisions. It may be best to have one of you making the decisions based on mutual information. Be sure he understands nomograms, what incontinence is, and how surgery will affect your sex life. Many men don't really understand this until after surgery.

It is very hard with this disease to say what is the "right" treatment for any individual. Given the complexity and uncertainty with any course of treatment, no one can say for sure, even many years after, if a given set of choices were optimum. In all of my reading about this disease, the best prognostic tool is the Gleason score. I am an 8; in recommending maximum treatment for me, my medical oncologist commented " A Gleason 8 is a Gleason 8." if I were a Gleason 9, I would not just throw the kitchen sink at the cancer, I would rip out the entire kitchen. I do not believe a fight with cancer can be fine tuned. None of this is easy. Sometimes all the choices are lousy. Best wishes!

NewspaperLover

Worriedabouthubby,

I am gleason 9 with a Dx PSA of 200/254, my uro wouldn't operate because he claimed it was a waste of time because he was sure my PC had metastized outside of my prostate.

Subscequent CT and Bone scans confirmed he initial thoughts that it was highly unlikely with my Gleason score it would be contained to the prostate.

Implore him to get a second opinion. His uro of course wants to operate, it is big income to him and at the end of the day you are not going to really know if surgery is the correct decision or get the correct results. I went onto Zoladex which worked for about 8 months PSA only went down to 3.2 before starting to rise again, and last december joined the Prevail clinical trial of MDV3100. Best decision I made.

He can still go back to the first uro and have surgery if he wants to , but he should explore the options and seek further information. At the end of the day it is his decision but he should listen to you and at least look at the other options.

Best wishes

Susan takes the blue ribbon here. She lends more than an opinion. She offers what I consider a very profound game plan. The best minds on this forum have chimed in to advise and assist in your dilemma. Asking your husband to read these posts addresses your plight on so many levels. If his opinion does not change then offer your full support for his decision and give him the comfort of knowing that you have his back. Keep us advised.

Jim