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Surgery date coming up, but haven't made a final decision on treatment

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Prostate Cancer
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Posted 10/25/2012 3:23 PM (GMT 0)
I was diagnosed with high risk prostate cancer (Gleason 8) on 9/13. Although I am yet to make a 100% decision, I have been leaning toward the DaVinci surgery and have a "hold date" of November 14 for the surgery. Last week--at the suggestion of many on this forum--I consulted with Dr Richard Lam to get more information. Although it took a while to schedule, it was an excellent consultation. As a follow-up, he recommended an MRI with an endorectal coil, as well as a re-look at my pathology slides from Johns Hopkins.

I'm now very concerned about the timing...I won't get a chance to review the extra data with Dr Lam until November 2. I also want to have a deeper dive with him at that time on the treatment options we discussed. If I go ahead with the surgery--which is quite likely--the timing is great and I feel I will be doing so in as knowledgable a way as possible.

If, for some reason, I choose not to do surgery at that point, I feel like I'll be canceling surgery very late in the game and possibly depriving someone else of a surgery slot. (I call this the bad karma option.) If I were to give up my hold date, the next possible surgery date would be December 12. Given that I have a more aggressive cancer, I'm quite concerned I'm letting things slip too long with the December date.

I realize I may be running very close to getting too much information but I feel like this Nov 2 consultation completes the picture and I'd rather make a decision based on info, not on the calendar running out.

Sorry for the long post...

Michael
Posted 10/25/2012 3:39 PM (GMT 0)
Michael,

You could let the surgeon's scheduler know you have another consultation on 11/2 that could affect the surgery go/no-go decision. Surgeon's often have patients that would like to move up if there is a cancellation. I would just be upfront without necessarily giving up the slot until the last minute so to speak.

SC

Posted 10/25/2012 3:51 PM (GMT 0)
I'd re-schedule surgery for end of November. You don't sound convinced of surgery and probably could use the extra time to explore your options.

Since you were diagnosed with high risk you probably don't want to delay treatment choice too much though.
Posted 10/25/2012 4:18 PM (GMT 0)
Speak with the surgeon's scheduler or the surgeon.

Mine was happy with one week notice, so he claimed.

I ended up doing it on schedule, as it happened, but I was not at all sure what I was going to do at the time I scheduled it (like you, about 8 weeks out.) I did a boatload of research in between before coming to the final decision to go ahead. Having the "out" and knowing when I needed to decide by (without being a jerk about it) was helpful to me.

Get out and walk (or other exercise) as much as possible from now to then. Both for the benefit to your healing process and the getting you away from stewing over research in front of the computer for at least an hour a day...I ended up doing a lot of late-night walking, but whatever works for you.
Posted 10/25/2012 5:00 PM (GMT 0)
There is little risk in delaying the surgery. Even aggressive prostate cancer is slow growing and a month or two won't make a difference in outcome. On the other hand the new tests could indicate that surgery is not the most effective treatment in your case, and going through with it could prove to be a disaster. Choose your treatment only after you have all the information available for making a sound decision as you have only one chance to get it right.
Posted 10/25/2012 8:56 PM (GMT 0)
I know being dx with an aggressive cancer is anxiety provoking but I agree with John T. A month or two won't make much of a difference. What is important is to make the right decision. Get as much information as possible. Don't let anyone or anything rush your decsion.
Zimac
Posted 10/25/2012 9:28 PM (GMT 0)
MichaelT I would also agree with what others have stated - why feel the pressure of keeping an appointment when you have this incredibly important consultation coming up? This is an absolute life-changing decision so IMHO I would inform the scheduling department that you have another appointment coming up that may change your date with them. No need to panic here, yes your Dx is "aggressive" but remember it's PCa and that doesn't mean you have to get something done in a matter of days. Your treatment decision, it's outcome, and the potential side effects are something you will live with forever - slow down and stay on your journey of information gathering. . . .

As always my best to you.
Posted 10/26/2012 12:56 AM (GMT 0)
Thanks all for your perspectives and rationale thinking, while I was feeling a bit on the panicky side. I spoke with the scheduler and asked her to keep my November 14 date, but told her there was a chance that my decision may change based on my November 2 consultation. She agreed to keep me scheduled, although I had the feeling I was upsetting the apple cart a bit with this.

Overall, I feel MUCH better now. Thanks all.

Michael
Posted 10/26/2012 1:38 AM (GMT 0)
Don't worry about upsetting the apple cart. Your surgery, if that is what you choose, can be rescheduled. Slots can quickly fill up in its place. Doesnt sound like you are 100 per cent on board to have surgery, and that is ok. Don't go ahead until everything is right in your mind. Getting this other opinion is far more important than staying good about an operation date. You have to be your own best advocate, trust your gut feeling, delay the surgery until you absolutely are sure this is what you want and its in your best interest. You dont get to push the re-set button after you have done a primary treatment.

david
Posted 10/26/2012 11:37 AM (GMT 0)
Ummm, trying to be gentle with my original thought, but - screw the apple cart! I remember how "insulted" the head of urology at a very highly respected medical facility in the midwest was when I asked him about Brachytherapy - basically told me that surgery, and only open not robotic, was the only correct decision for me. When I told him that I had other appointments scheduled and was still on my journey of learning about this beast and ALL of the treatment options I too felt that I had not just upset the apple cart but through it over the side of a cliff! And looking back I'm glad I did!

This is your life, your quality of life, your decision - the best you can do is stay calm, learn as much as you can, and decide on your choice of treatment.

Good call on the way you handled the November 14th situation!
Posted 10/26/2012 12:02 PM (GMT 0)
Absolutely, be sure of your decision before you commit. There are no do-overs and this is a major decision. Read, ask questions here, have consolations with a surgeon and a radiologist and get second opinions if you can. This is not a time to play nice guy to try to accommodate the medical community. They should be accommodating you. Check out all your options and be comfortable with whatever you choose.

You can read what I went through by clicking onthe link in my signature.
Posted 10/26/2012 9:18 PM (GMT 0)
Michael,
Sorry that you are here! Do your homework and do what you are most comfortable with..It seems that you are only dealing with the experts in their fields so you should be well taken care of...When I was diagnosed with "high risk" gleason 8 pca my consult with a young resident urologist lasted 10 minutes at the best before I walked out and drove the back way home--afraid I would rear end someone on the toll road I was so panicked..She was pushing surgery since radiation was done at another facility...I almost died in a hospital long ago and decided "no more"..Yeap, I had 79.2 g's of imrt radiation and am on lupron for 3 years--I year left! Was it the right decision? Win, lose, or draw it was for me...If you elect radiation, drink plenty of fluids and don't be checked for colon cancer a few months later--my bad having 3 hospitals involved but I'm better now..no pads, no incontinence, and I won't talk about ED--they still look great however!
Age 70 now--dx sept 2010 psa 4.89
biopsy--4+4=8 in 5 out of 5 cores w/50% core involvement & 20% tissue--pin present left lobe-focal areas of 5
right lobe--4+3=7 in 4 out of 5 cores w/80% core & 50% tissue. pin present also--ro found the extra capular extension
79.2 gy's completed in Feb 2011--psa down to <.03 now
Posted 10/27/2012 5:44 PM (GMT 0)
Michael_T
Do what is best for you. Don't worry about the hospital slot. It will be filled as fast as the hole your fist leaves when you pull it out of the ocean.
Do the homework and research. It will help you sleep nights.
Jeff
Posted 10/27/2012 7:15 PM (GMT 0)
The best way to not let second-guessing get out of hand after your primary treatment is to take the time to get consults on the rest of the options you have available.

My surgeon would not even talk about booking a date until I reviewed the other opinions I had gotten. He required me to talk to a radiation oncologist and discuss the case with MD Anderson, as I was thinking seeds or Proton as options.

It doesn't mean that you have to get a degree in PCa as some here have done devil , but you need to be comfortable with why you made your decision, as that desire to second-guess will continue to try to come out.

Posted 10/28/2012 12:26 AM (GMT 0)
my DV is set for halloween eve Eve 30th oct- dont relish it but it will be over with and healing will begin, had to delay 3 weeks to get trips out of the way
florida, new mexico and vegas - great weather and now we will be able to relax after surgrey
Posted 10/28/2012 5:12 AM (GMT 0)
Agree with what the others have said. I was a G7 going into surgery and a G8 after surgery. I felt like I needed to act quickly but took the time and had a second opinion and discussed other treatment options (radiation and seeds). Good luck on whatever decision you make. Keep us posted.
Posted 10/28/2012 8:42 AM (GMT 0)
In my husband's case, he wasn't given any options for surgery or radiation until after 8 months of hormone therapy; in hopes it would shrink the tumor. At first we felt like HT was equal to nothing being done.

When he was given the option, he was totally against radiation until he learned that surgery would remove his bladder along with his prostate.

Meeting with Scholz & Lam was truly a life changer. They confirmed our thoughts that surgery was of no value with known positive lymph nodes and invasion into the bladder. With positive margins, post surgery, RT would have followed within months. So, he chose RT as his primary form of consolidation and he made this decision with his surgery date scheduled just 8 days later.

We felt like one of the above posters mentioned...that someone is always waiting on a cancellation.

There is not a day that goes by that we aren't thankful that we took time to fly out to Marina del Rey for a second opinion. Truly a life changer.

I certainly agree with you on focusing on info and not a calender running out.

Best of luck in whichever route you take.
Posted 10/28/2012 12:32 PM (GMT 0)
Michael, I wouldn't worry about taking up a surgery slot. That is how I got in a slot 6 weeks early. I was put on a cancellation list. I actually got a call from the scheduler on the way home from Atlanta informing me that a gentleman didn't want his surgery done on the "13" of December. They already have people they can call if you happen to cancel surgery, so that should be the least of your worries. What ever your decision, be comfortable with it. Pray everything works out best for you.

Ron
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