Need advice for post prostatectomy treatment!! HELP!!

Welcome Confuzzled. (And dad)

If your dad is 55 then I'm guessing you are a lot younger than most people who find themselves in your situation. Sorry you've got to deal with this at all but being younger can be tougher, but your first post indicates that you have already been getting sound medical advice from the right type of docs.

RT for eight weeks will actually probably be about 39 sessions on week days with what may feel like two days off at the week ends to recover. (RT is not usually a problem to start with but by the end of 8 weeks you can feel very tired.)

As for RT & HT.
If the docs are not sure where the cancerous cells are that have been left behind, they may want to use RT and HT separately (Like mine did).
With me they hoped that the cancerous cells were in the area near the prostate (prostate bed) and they directed my RT at that area. So when my PSA went down after my RT it was reasonable to conclude that they had aimed the RT at the correct place. Had I just been given HT then the PSA would also have gone down regardless of where the cancerous cells were located. (ie the HT would have disguised the effect of the RT)

However there is another scenario where, based on pathology, staging etc, they may conclude that there are probably cancerous cells in the prostate bed and that there likely to be some elsewhere too, and so it will be better to try and treat both problems at the same time and thus use RT and HT together. Thee are many guys here who have been down this road and I am sure they will provide some more details.

Also your dad is only 11 weeks after surgery and I think that many of us would think that he could do with a bit longer to recover from surgery before going through the next part of his treatment.

Also are you in the US and posting late at night or (like me) in a different country and posting in a different time zone? I ask as there are folk here from a variety pf places who may be able to give moore specific support if you are not in the US.

All the best
Alf

I encourage you to question everything and all time...and show me how the expert docs know PCa contained. We have patients on this forum with clear margins, clear everything and told basically in effect you are cured (per se). Some of those unfortunate patients already have BCR...so how did that happen??? Presumeably Dr. Strum et al, are novices in PCa and couldn't know that much???

Recent article is out about uro-docs owning radiation facilities so as to refer you to those.

Confuzzled,

As you can already see, there are some very strong positions on Radiation and Hormone Therapy.

I will stay away from those conversations.

My experience (at age 56) was about the same - G 4+4, bilateral, PSA 7.4.

Post surgery was worse, as I had G 4+5, positive margins, and EPE.

My PSA did drop to undetectable, but with the extension (EPE) it was presumed my PCa was out, if not yet growing somewhere else.

Based on the coverage (9 of 12 cores all G 3+4 or 4+4) and the Gleason, I was expecting radiation from the start.

I did adjuvant radiation (39 sessions) and started the process about 21 weeks after surgery (see my sig link for the details). I did not do HT, having had equally confused opinions on its value at that point. Your case is slightly different, as the PSA has not gone to undetectable, so the case for HT is a bit stronger.

However, I'm a patient, not a doctor, so will suggest only that your dad visit with the Uro, the surgeon, a good Radiation Oncologist, and if possible, a Medical Oncologist, then try to sift out the opinions. At least my insurance had no problems paying for multiple opinions, although I was limited in those I could use by my plan. There are so few hard, cold facts in the PCa world that it is, as Zufus reminds us, a Twilight Zone of its own.

Welcome to HW, and please ask whatever questions come up.

F8:

I'm with you, living 1963 Todd had mets in the lungs and pelvis before starting HT.  A year later he said his scans were clean, if that's masking I'll take it everytime.

David

Good luck on your search. I can't advise, but I can share my experience. I did not have surgery, instead I had HDR brachytherapy and IMRT. I was started on HT one month before to start weakening the cancer so that the radiation could be more effective.

My doctor explained that there are various studies and findings that assert that a multiple approach can be better than a singular approach. That is the philosophy my doctors took. Further, my docs all agreed that the more aggressive approach right up front would be the best.

I have completed all the radiation in great shape.I am getting my second Eligard shot in April and also take Jalyn daily. Yes, there are side effects, but they haven't stopped me from enjoying life.

My first PSA reading after treatment was <0.1. So far so good.

Zufus and Steve. I see both sides of your argument and understand where you are coming from.

Zufus, your skepticism and general distrust of doctors is legendary here. We get it, New people coming here really don't need horror stories of your experiences thrust upon them in the first post you make to them. The concept of replying to every poster with your dire warnings of how doctors are unscrupulous and not to be trust is wrong, that's the wrong was to approach the subject. Telling them to question all treatment discussions implies that they should approach every doctor with mistrust and skepticism, when we know you really mean to question and make sure you understand what they are telling you, the drawbacks, etc. Two different approachs entirely. Yes, there are bad doctors, but there are many, many more good doctors and for each guy here with a bad experience here there's 10 others with good ones. I really think that throwing out the vibes of 'they're all crooks, watch out for them, never trust them" doesn't have a place here. You accuse Steve of sugar coating, I don't see that at all. Telling people to make sure they understand things, with questions, etc, getting second opinions, things like that is logical and correct, and doom and gloom in every post isn't. How about reining it back some with the doom and gloom side of it, ok?

Steve, I appreciate what you said, but you have a really bad way of saying it. Your post is a major flame from start to finish. I understand how we can sometimes lose it, not having a good day, feeling bad etc. but we need to take a minute to reread what we are getting ready to post, to avoid unnecessarily flaming or insulting. If you felt/feel so strongly then maybe the best thing to do would have been to email zufus and you two could have a private discussion about it. Sorry, but I gotta do some editing out of Rule 4 violations. At least zufus did have a chance to read and respond before I got to it.

4. No posts that attack, insult, "flame", defame, or abuse members or non-members. Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member. Decisions about health and well-being are highly personal, individual choices. "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

Confuzzled - a suggestion that is in notes at the top of the forum, but ...

Get your dad to carry a small recorder (if you don't have one already, a small digital one would let him upload the files on the computer). With permission of the doctor(s), this can be a great tool. I recorded all my sessions pre-surgery, and going back days or weeks later and listing again, there were many things said that simply went over my head because of the shock of the moment. Even if someone goes with him, I think it is valuable. Regardless of what we remember hearing ....

zufus says:
So hows this: I will no longer put up any hotly debatable topics or information.

No, you will not stop contributing debatable topics or information, that wasn't what I meant at all. I only addressed one small area of your posting history, not trying to muzzle you or anything like that. It's just the doctor bashing and warnings of how they don't have the patients best interest in mind when planning treatments. That's all, nothing more, just the single item,

Thank you all for replying! I wasn't expecting so many replies overnight! I've read every single one of your posts and I thank you. It is a confusing time but all of your support has helped already.

In reply to questionaboutit, it is mets on one side because it is 4mm out of the prostate with 1mm clear from the margin.

In reply to English Alf, yes I'm from a different time zone, I'm from Australia ;)

You have no idea how many doctors my dad has seen, basically everyday, getting different opinions non-stop! The funny thing is, the radiation oncologist and his treating urologist, they were in the same meeting room discussing my dad's prognosis and treatments, and they're the two doctors with totally opposite opinions. My dad is going to continue talking to a few doctors to ask why their opinions differed. Well I guess the answer is, no one really knows how to treat this, not even doctors. It's all up to the patient, right? A decision has to be made.

Another thing is, my dad's treating urologist has said that no studies have been done for people in my dad's situation, i.e. post prostatectomy and using hormone therapy with radiation therapy. So, the doctors are going on theory here! That HT weakens the cancer and then radiation kills it. We'll have to wait and see. Am I confuzzled again? I think yes, but a little less confuzzled than before thanks to every one of you :)

Thanks again everyone! Good luck to you all as well with your treatments :) Will hopefully keep you posted.

Confuzzled

Confuzzled,

I don't think you are as confused as your name implies. Sounds like you and your Dad together, have a pretty good handle on this situation. The fact that there are so many variables involved in each specific case, is what makes choosing a treatment for this particular cancer such a weighty decision.

From your post above it seems like you are taking all the appropriate steps to becoming as informed as possible. From there it's just a matter of sorting through all that (conflicting) information and choosing what's best in your particular case.

This is a great place for you to have come. There is a lot of good information to be gleaned, albeit, different, and opposing view points as well. Not to mention the moral support, comfort, and inspirational aspects. Emotions run high at times, but isn't that to be expected?

Though I am relatively new here myself I bid you welcome, and wish the best to you and your Dad.

MiraBeau