How long should I wait to decide??

F8 said...
Take all the time you need but not longer than two weeks. that's what my doctor told me and that's my belief too. fact is no one knows your actual risk level or how far your cancer has spread. good luck to you.
ed

Agreed, no way for us to know the individual circumstances a new person here is facing with his overall health. That's really something for his trusted doc to advise on. The people posting here are not statistics to me.

I'd say that 2 weeks is typically plenty of time to accomplish the research required for an educated and personalized decision. Of course there are more complicated cases that could require more time.

I mean if one has issues with AS, these become apparent pretty quickly. Then you're left with comparing the various treatment choices. In my case at 40 it was easy to make a choice. I knew both would be equally successful, but the idea of 36+ sessions was a major drag. I was also more concerned about long term potential side effects from radiation than with overcoming short term or serious potential side effects from surgery. I was told that I was young, sexually healthy, and that in the hands of a great practitioner, potential side effects could be greatly minimized. I gave the two some thought but knew the direction I wanted to take within 2 weeks for sure. In that time period I spoke to several urologists, renowned oncologists, many patients, and my family. They all advised me to follow the course my instincts also lead me in and in my case, of course, that turned out to be a very wise decision as I didn't have any side effects at all.

Yes, no doubt getting quick responses will determine time needed. I was lucky in that two of the oncologists I spoke with, one linked here before, are close family friends so I was able to call whenever I wanted.

I think a 2 week schedule is very viable under the proper conditions. Whether one is for AS or not is a pretty quick study. I'd be curious to see how many people who new AS wasn't ideal for them changed their mind subsequently. I'm guessing most folks on AS or who tried AS new pretty much right away that they were cut out for it. So that then leaves a decision based on the various reputable treatments out there. I think that after consulting with the proper authorities and doing some research a decision can be reached relatively quickly. But sure, depends on the person.

Just wanted to add that my first 3 days post diagnosis (received during phone call) I did all my research online and that that was an awful idea. I think one needs to be properly educated on how the Internet provides mostly noise and that finding the good stuff itself requires an education. Case in point, when I was upgraded from G6 to G7 I didn't take it well. Went online and the first Google query I performed lead me to an interview with an oncologist who was quoted as saying G7s can expect to live 10 years. Didn't take that well at 40. My oncologist contact and the nurse of what would turn out to be my surgeon's nurse then put that in perspective for me.

Post Edited (davidg) : 11/19/2013 6:35:44 PM (GMT-7)

Trust me, I will follow up with treatment ASAP after I have read more and have opinions from experts. I have appointment with Surgeon at UCSF, a local surgeon, a local radiation oncologist and am working on referral to medical oncologist. With those consults and my research (knowing what information to ask for) I will schedule treatment as soon as I can find and schedule with "the best" doc available to me. Also, I can't figure out how to come up with the "T" level to plug into the Partin table. I thought it was T2 but How do I , a5t this point , know if it is contained or not?. How do I know before surgery if it is OC,EPE,SV+,or LN+? Need that variable to use Parkin table.

mule packer,

It sounds like you are trying to use the wrong Partin table - there are several depending on the situation (e.g., before RP, after RP, etc.). You may find the following nomogram, based on the updated Kattan data:
nomograms.mskcc.org/Prostate/PreTreatment.aspx

UCSF has developed its own risk stratification system called "CAPRA." You can use their on-line calculator which is halfway down the following page:
urology.ucsf.edu/research/cancer/prostate-cancer-risk-assessment-and-the-ucsf-capra-score


The stage is based on the DRE and any normal ultrasounds or MRI. So if your urologist said it was all smooth, it is T1c. If he said he felt a small lump on one side, it is T2a. If the ultrasound showed hypoechoic areas throughout both sides, it is T2c. If a normal MRI showed extracapsular extension, it is T3a. Etc.

mule packer said...
FYI Have 2 groin hernias and a navel hernia to complicate things. This is going to be the ride of my life!! and I'll be fine in the end... all of you have been here. Thanks for your help and encouragement.

I had two prior inguinal hernia repairs (the most recent being bilateral with mesh). It is often claimed that robotic surgery is better for dealing with these but I preferred open surgery for a variety of reasons so I discussed the hernias with my surgeon, who has done thousands of RRPs, and he said he has dealt with many prior hernia repairs and they are rarely an issue unless the surgeon went overboard with the mesh. Well he ended up having a hell of a time with me. The operation took twice as long and I lost a lot of blood (both during and post-op). He said many of his colleagues (at Hopkins) would have closed me right back up.

I don't know if a robotic surgeon would have had an easier time, but I'm still very happy with my choice as in the end I had a great result (notwithstanding a couple of blood transfusions and extra day or two in the hospital).

So the issue of the hernias is definitely something to consider and discuss with the doctors but, in general, I would say find the absolute best surgeon you can irrespective of the surgical approach.

Good luck.

i waited 5-7 weeks from decision to treatment. decision and choice of surgeon took 2-3 weeks. My mother wanted me to have surgery asap once decision was made, i wanted to do it after Christmas, my surgeon told me to wait for everything to heal properly from biopsy. original local urologist wanted to operate something like 3 weeks after biopsy.

I was diagnosed in October with a very-low-volume Gleason 6 (upgraded to Gleason 7 3+4 by another lab) and I waited three months for a repeat biopsy to confirm it (that biopsy was negative). I decided to go ahead with surgery anyway but waited until June when a new job would give me better insurance. That's nine months from diagnosis to surgery. Since I was a candidate for AS I figured that the wait wouldn't hurt me. Maybe not such a good idea after all.

Clanda: I am curious why you proceeded with active intervention, and why surgery, vs radiation with such low PSA? I am very interested in your thought process. Thanks

Mule Packer,
The good news is that you will probably die of something else instead of PCa. The bad news is that you have so many choices! Even at an HMO you can still select a Dr that you trust. Please don't be pressured by any physician. A favorite "ploy" of surgeons is to say that there is the risk of secondary cancer from radiation down the road..I believe that both John T & TA will agree that there is minimal risk within 10 years..There are no 30 year studies that I am aware of--lol..Good luck with any decision you make--You will be fine.
Bill

mule... just keep doing the research and be careful when folks on this forum quote numbers. For each study that get quoted, I can find one that differs. For instance, if go to nomograms.mskcc.org/Prostate/PreTreatment.aspx your will find different numbers than have been shown above. Also, if you go to urology.jhu.edu/prostate/han_tables.php?lk=Han you will again find different numbers, even though the same institution is responsible.

Also, while ED and incontinence are a little different between treatments, you need to look at short and long term along with the other side effects (bowel problems [proctitis], problems passing urine [reverse of incontinence], etc.) so you get a fully rounded thought process before making a decision.

In the end, you probably can't go wrong no matter which way you go as long as you get the best doctor possible.

Hi Mule... glad to see you have made a decision! Yes, your PSA increase is a flag. It could be because of some benign reason, but given all your other stats and your decision to move forward with surgery it is a bit mute... other than one another data point to support treatment.

The good thing is that you have made a decision... enjoy the holidays and look forward to starting 2014 off cancer free!

Best wishes!

Your biopsy numbers were similar to mine. All I can say is, I'm glad I didn't wait longer than two months after my biopsy, because my cancer was just about ready to escape jail and go on a long journey.