Recent diagnosis G9

Hello Search, and welcome to a fantastic forum that no one wants to join. The fellows on this forum are among the finest anywhere, and this is a great place to obtain information that provides fodder for your decision process. You have provided a lot of information which helps, but let me ask a couple of questions; How old is your husband, and, aside from the PCa, what is his general health?

I'm also a Gleason 9. I had the open RP surgery, and am now on hormone therapy. (Lupron)

k

Sounds like mine. I am a G 4+5, but did not have issues in lymph nodes or Seminal vesticles. Multiple surgeons felt like they had a chance of controlling the cancer for a time (no one promised a cure).

I got the "great results, you will be cured" pitch from multiple Radiation Oncologists, but none offered better than 70% success when pressured. 70% in my world is far worse than the most abysmal failure, and gets no acknowledgement from me.

There is a trade off. With surgery (as I chose) there are guaranteed issues (short or long term varies, mine are long term) with ED and incontinence. RT may have less side effects short term, but can have ED issues years down the line.

I chose DaVinci surgery, followed by the same radiation that was supposed to save me all by itself. The two together did not accomplish the promised results, and I am off to the oncologists yet again.

Get multiple opinions from doctors of the same type (surgical, radiation, whatever) before making a choice.

 

Consensus thinking used to be that if the cancer was not capsule confined then there was no point in surgery. More recent research is showing benefits (for example, lower biochemical recurrence rates) in doing surgery even in people who have extra capsular extension or positive margins, and the removal of lymph nodes adds to the effect. It is not entirely clear why that is the case but the data are there. In most cases there is adjuvant therapy so maybe taking out the bulk of the tumor gives the adjuvant therapy more of a chance to work. You can look at the free abstracts on pub med to track this for yourself. So this is an unsettled area, but it looks to me like the conventional wisdom is slowly shifting.

PC is unlike any other medical condition.  Most other conditions have a straight forward approach.  I am by no means suggesting any form of treatment.  We are all baffled with the treatment choices laid at our feet, which magnifies the stress & confusion.  As alone and helpless you may feel (as we all do), you will find a degree of comfort with this forum.  It will also assist you on making your choices.  Waves of dispair and hope come and go, and will be overwelming at times.  This is normal, but there is a shinning light, that this sight will provide.  There are many success stories here, regardless of the gloomy picture painted in ones mind.  I wish you the inner strength to drive on, keep researching, and give PC all the hell that you can.

I understand that he is one of the best. Just from reputation.

he is considered one of the best. The only thing I would verify is if he does his surgeries by himself start to finish because I've heard otherwise. If that would be important to you of course.

Search:
My numbers were similar to your loved one. My urologist said he would not cut me, thankfully. My radiologist was depressingly honest and unwilling to do any more than the minimum treatment of 70 cgys with "maybe" seed boost. Sorry, brother, you're out. However, he referred me to a top regional doctor who said surgery could be the first step in a series of treatments lasting for many years. He was right and I went with him.
Surgery has the advantage of providing a better chance of local control, that is, less prostate area problems in the future since there is no prostate. Also radiation on lymph nodes or elsewhere in the region may be available in the future.
On the other hand if surgery is not the best choice for cancer control why go with a second best option in the first place? Radiation with hormone neo-adjuvant (at the same time) has been shown to be superior in results with men like y. l. o. compared to hormones alone or surgery alone.
The key point is that he should look at this decision as the first in a series of treatment options. He has a long way to go, and many years.

Sagittarian said...
  Waves of dispair and hope come and go, and will be overwelming at times.  This is normal, but there is a shinning light, that this sight will provide. 

Boy ain't that the truth!!

 

My husband's stats in 2007 were very similar to your husband's.  We chose DaVinci followed up by SRT, had recurrence within 1.5 years and in 2009 went through chemo, HT and anti-angiogenics.  Ended HT in Sep of 2010, still on anti-angiogenics.  PSA is creeping back up so not much of a break before next round begins.

Good luck and hang in there!

Thank you all for your support, advise and sharing of info. We are reading everything you send! This is all so helpful! Just wondering if anyone has used Tewari? He came highly recommended and we have spoken with one person who used him but his gleason was a 6. This gentleman was very pleased. You have all been so welcoming and we are grateful!

Searchmode - My father's stats were similar to your husbands, gleason 9 & 10, T3 with seminal vesicle involvement.
Dr's said no to surgery, and instead his primary treatment was IMRT and ADT (Casodex followed by Lupron), along with a small course of chemo (taxotere) all as part of a study. His IMRT treatments ended about 1 year ago, and he still has about 6 months of Lupron left I think.
At the moment, knock on wood, he is doing very well with an undetectable PSA, and just dealing with some side effects of treatment (some pain down there).
Note - disregard my signature, it is not up to date, and I can't seem to edit it!

If you decide on surgery, Dr. Tewari would probably be a fine choice. I don't know him personally, but has a good reputation and considerable experience. The much harder question is whether surgery is -- or is not -- the best choice. On that question, you may have a "bias problem" -- surgeons get paid for doing surgery, and are most familiar with surgery, so on the whole -- albeit with exceptions -- they are more likely to recommend surgery. Same is true with radiation oncologists, for radiation. That does not mean that these doctors are unethical or that they put profits before their patients' health. It is just that their perspective on difficult questions, which have no clear "right answer," is colored to some extent by their experiences, their familiarity and expertise, and by their own interests. We all have biases, so nothing surprising about this. Given this, I think JohnT has the best advice for you. Go see a medical oncologist. First, with some advanced statistics, you might need a medical oncologist now or at some point. But, more immediately, a medical oncologist (at least if you see the right one) will be (1) knowledgeable about prostate cancer, but (2) not as likely to have a strong pro surgery or pro radiation bias as a surgeon or an RO -- since the medical oncologist does not do any of these procedures. In your situation, there is absolutely no way I would decide on surgery or radiation without meeting with a medical oncologist who has expertise in prostate cancer. I would not say the same thing for low risk disease, but for higher risk disease I think it is very important. If you tell us where you are located, someone on this board will be able to suggest the name of a medical oncologist with whom you should consult. Best wishes, Medved

Looking for your recommendations for a top notch med oncologist? We are in Delaware but can travel. Anyone have experience with Snuffy Myers?