Band of Brothers, I am back

I tried to stay away, but just could not. I do not have a support group that I attend, so I need this forum to seek info, vent and generally stay up to speed on the latest treatments. It's so good to have this 'band of brothers'. I am sorry that I stayed away and did not support you guys for last couple weeks.

With that said, I am scheduled for surgery on June 1 in Philadelphia at University of Pennsylvania with Dr. David Lee. I am reaching out this time for support. I have emailed several members individually, and their support has been great (you know who you are!). But, I think writing some of this down, taking the time to think about what I am writing, is good for me and I look forward to the feedback.

So, I am off to surgery with one core 4+4. Very scary.....yes I am petrified! Not of the surgery, but of the Pca. I will get a true pathology and hope that it gets downgraded. Maybe it will get upgraded? I can only hope.

I just can't help but mention that I checked the Partin and Han tables for my 'predictive' expectations. They basically say, for someone like me, that there is a 55% chance the cancer is contained. There is a 65% chance there is not extracapsular extension. There is a 8% chance it has spread to the seminal vesicles. There is a 3% chance it spread to the lymph nodes. Also, there is a 87% chance at 3 years and a 79% chance at 5 years and a 72% chance at 7 years of not having a biochemical recurrence.

I have clear bone scan and Pelvic CT scan. I went for a 3T parametric MRI with the endorectal coil 2 weeks ago. My report is listed here:

*******START REPORT **************

CLINICAL INFORMATION: 54-year-old man with biopsy-proven prostate carcinoma. According to the electronic medical record the most recent PSA was 2.5 on 8/31/2015 and biopsy performed 2/22/2016 revealed:
LB: GL 3+3, 5%
LA: GL 3+3, 6%
RB: GL 3+4, 67%
RM: GL 4+3, 67%
RA: GL 3+3, 18%
RLB: GL 3+3, 18%
RLA: GL 3+3, 74%
RM: GL 3+4, 71%

COMPARISON: Outside bone scan March 11, 2016 and CT of the pelvis March 23, 2016.


TECHNIQUE:

MRI of the pelvis with special attention to the prostate was performed using a 3 tesla magnet. An endorectal coil was used. Small field-of-view axial T1, axial, sagittal, and coronal T2 weighted images were obtained along with diffusion weighted
imaging. Dynamic contrast enhanced imaging was obtained before and after the IV administration gadolinium contrast. Large field of view imaging was performed utilizing a sagittal T2 weighted localizer sequence along with axial T1 and T2 weighted images.

CONTRAST:

14 mL of GADOBENATE DIMEGLUMINE 529 MG/ML IV SOLN was administered intravenously.

FINDINGS:

Prostate: There is mild central gland enlargement (BPH). There is a moderate amount of post-biopsy hemorrhage.
Prostate size: 2.6 x 4.9 x 4.1 cm (AP x Trv x CC), which corresponds to a calculated prostate volume of 26 mL.

Focal prostatic lesions: There is a dominant nodule within the 8 o'clock position of the right peripheral zone mid gland:

Lesion 1:
location: Dominant nodule within the 8 o'clock position of the right peripheral zone mid gland (series 7 image 17). This lesion involves approximately 50% of the right peripheral gland.
Size: 9 x 15 x 19 mm (AP x TRV x CC)
Restricted diffusion: Marked
Hyperenhancement:Marked
Extracapsular extension: Smooth bulge of the adjacent capsule, without extracapsular extension.
Seminal vesicle invasion: Not present

Bladder: Grossly normal.

Peritoneum: There is no pelvic ascites.

Lymph Nodes: No pelvic lymphadenopathy is seen.

Visualized Bowel: Grossly normal.

Vessels: Normal in caliber.

Bones: No suspicious osseous lesions are seen. Small geode within the right symphysis pubis.

Soft Tissues: Unremarkable.

Other Findings: None.

START FOCAL MASS ASSESSMENT SUMMARY
Other: Prostate 6: Known cancer.
END FOCAL MASS ASSESSMENT SUMMARY

IMPRESSION:
Enhanced endorectal coil MR of the prostate

Confined prostate cancer with dominant nodule at the 8 o'clock position involving approximately 50% of the right peripheral zone. There is a smooth bulging of the adjacent capsule without extracapsular extension, seminal vesicle invasion, pelvic lymphadenopathy, or pelvic osseous metastatic disease.

Calculated prostate volume of 26 mL.


ATTENDING RADIOLOGIST AGREEMENT:
I have personally reviewed the images and agree with this report.

********* END REPORT ******************

So, the way I think (and why not think positive ?) is that with the predictive percentages and my 3T parametric MRI report showing containment and no capsular extension, no seminal vesicle involvement, no lymph node involvement, and no pelvic bone involvement, that I have a chance to have a good outcome. Those percentages are out there somewhere in this world walking around, it's just hard to find them. I did find 3 G8's that had surgery on Yana from their inactive stories that are pulling zeros at over 5 years. One is at 14 years!

I spoke to the Dr. just last week. He tells me that I am still an excellent candidate for surgery. This is based on what we know so far from the various tests. I asked how clear this type of MRI is, and he said very clear, that this is a pre-surgical tool, but is not the same test if I were to have RT. He basically said it will be tough to spare the right nerves, simply because the right mid is where the tumor is located. He feels a little better about the left side. However, we both agreed that cancer control is first, ED is second. That's the breaks and I'm willing to accept that. My decision is made and I am not looking back!

So, I am "believing'" my predictive outcome. I know it isn't a 90% chance, but you know, it isn't a 50/50 shot either. I got 'house' odds and I feel good. I am going to kick arse is the surgery and recovery. (By the way, I got 9 weeks off from the Dr. even though I have a desk job. Then I am using 4 weeks of vacation to take the rest of the summer off! 13 weeks total! That's because i have earned over 300 sick days in my 31+ years of employment).

BROTHERS, what do you think? You see my numbers. You see the 3T MRI Report. You heard the opinion of my surgeon. Do I have cause to be thinking that I have a real chance to beat this thing? Where are the G8 surgery guys?

Enjoy your day and rest of the week.

J

JayMot,

Glad you've approached all the forum experts and Everything of the best with the surgery.

I only had 1 core out of 16 with a smidgen of G9. My prostate was removed almost 30 months ago and so far the PSA < .01. One set of nerves was retained and ED is history and continence is good. (see my story below, and my travails with ED)
.

Welcome back JayMot. We are here for you 24/7.

Bill from Florida

Pratoman,

I kind of hope to be like you. Surgery is going to tell my true pathology. Maybe I can be a 3+4 afterwards!.

J

Guys,

One of my main questions is how good are these 3T parametric MRI's (with the endorectal coil) to the surgeon? I trust UPENN and their radiologist's interpretation of the MRI. I would like to think that mine is not overly bad. Sure, I'd like it to show less, but it is what it is. I know I got the very visible tumor, but I also have the report stating no "extracapsular extension" and "organ confined". I would really like to beleive that if these MRI's don't mean squat, then why do them? I am hoping that they are a valuable tool. I would like to beleive that my surgeon would NOT operate if this report stated any extensions, not organ confined and invasion of vesicles, nodes or bone.

By the way, I looked at some 3T MRI's of the prostate. There are plenty of examples on the web. Some point out the extensions, the bulges, the vesicle invasion, etc. that even I can see. So, again, I am hopeful.

J

On my MRI report, they stated that there is still "a moderate amount of post biopsy hemorrhage" . That was 2 months ago! Still healing down there.

JayMot:

Remember you are a person, not a statistic. 16 yrs ago I was diagnosed with stage IV oral cancer-and I'm still here!

We're all pulling for you!!

Andy

Hey Jay, best of luck with your decision.

The MRI report sounds very hopeful that the cancer is contained and surgery will do the trick. My 3tMRI showed possible extra capsular extension and possible seminal vesicle invasion so I was pretty worried, but the hormone therapy shrunk the cancer from those areas (based on another 3tMRI right before surgery) and they based their surgery plan on the initial MRI and took out a lot of lymph nodes and 50% or so of one set of nerves. Like you I just wanted cancer control first. My pathology report came back great so I remain hopeful it worked. I think the 3tMRI is an excellent tool for them to base a surgery plan.

Having said that, my understanding is it doesn't always see everything. So you just hope for the best. It's good yours is just recent so between now and surgery time you would not expect too much to change. My surgery roommate was a gleason 9 (11 of 12 cores) and his 3tMRI showed no ECE and no SVI but by the time he had surgery months later his pathology report came back with all those things and more. Did the MRI miss it? Or did it spread to those areas in the few months or more he took to get to surgery? I'm inclined to think it spread to those areas because of the time past with an aggressive 9 but who knows.

Like you said you make your choice and move forward with a plan and with hope. I wish you all the best and would expect your results to be good and am hopeful that will be the case.

PS....Ouch, those endorectal MRI's are really uncomfortable to put it mildly. I am glad those are in my past...Jim

I had a 3.0 Tesla strength MRI system as it did not need an endorectal coil :) Although the report showed one lesion, it did not find a second (at top). I think the surgeon preferred to rely on a 28 core Transperineal grid mapped biopsy.

JMo
Welcome back to HW. Glad to see you're looking back here. I think you'll find the support good and the information from various sources and individuals top notch.
Here's a couple other post surgery tips to add to the great list above:
-if you wear boxers, consider getting a very loose pair of briefs. It should be loose around your waist since incision areas may be pretty tender and you don't want the waistband pressing down on them. Briefs because you will want extra support carrying around your sore and possibly swollen testicles. Mine were like grapefruits.
-speaking of swollen nuts and support -- make sure you have a bag or 2 of frozen peas or corn on hand. I used them to lift my sack off the bed and to help cool them down. If they're too cold alone you can wrap the frozen peas in a freezer bag and/or a light towel.
-when changing or cleaning the catheter bag make sure you have room and don't get too close to anything you could get caught on. You don't want to have any unnecessary tugs while you are healing. I had my catheter bag kicked when my wife walked by me and a towel fell on the loop when I was in the shower. Funny as it sounds it very painful.

Lastly, there are usually questions about what to tell your kids. Judgement is needed based on age but I have found that it works good to only tell them what they want to know. I initially told mine about my cancer and a little about the treatments or procedures. After that I tell them as much as they want to know and I also tell them to ask me or my wife if they do have questions. If they ask questions, I explain. So far, that's very little and that's worked for them and me so far.
Talk to you soon brother

Another suggestion:

I found a cane to be extremely useful. After surgery, I found it very painful to go from a sitting to a standing position. The came helped me immensely in that regard. I needed it for about 4-7 days.

Mel

JayMot,

Welcome back! You've gotten some great advice thus far! Everything will be fine!

Keeping you in my thoughts and prayers!

Dave in Bartlett, TN

I would be looking at a combination treatment with your numbers and odds. of course your surgeon believes in surgery. good luck in whatever you decide.

ed

F8 and others......

I am almost resigned to the fact that I will be on a combination of therapies in the near future. It is kind of depressing and foreboding, but what's the alternative? Yana G8 stories of success are mostly with combo therapies. However, there a few with mono therapy (surgery) only. I don't know how they won the PCa lottery?

I am taking a shot at surgery success. Maybe not the best odds, but I feel I have a shot. Others are out there that are similar to me that DID have success. Maybe not the majority of G8's, but there are many. I keep saying, why not me? I keep staring at the Partin and Han tables and the MSKCC nonograms and see over 50% success rate at 10 years. Now I know, if you throw 25,000 G8's a year into these formulas, 12,500 are going to win and 12,500 are going to lose. Maybe, just maybe, i could win this flip.

I can't help but think with so many diagnosed in the US, i think is it upwards of 225,000 a year, that there has to be some successes at G8. These people simply get treatment and move on with their lives. (I wish EVERYONE in the US was on Healing Well broken down by G score, etc. and be searchable. This way, I can find very similar people that have had success. I know it would not directly result in me having success, but I want to believe that I will be a success and it would certainly put me in a better state of mind.)

But, alas, I am scared and frightened. I feel like I have no control. I want this surgery done, I want the pathology done, i want a long term plan in place. Everything seems to go in small stages, test after test, consult after consult, day after day of worry. It just never seems to get any better. I not only need June 1 to get here, I need July 1 to get here (1 month post surgery).

Sorry guys, but this sucks. You know it, you've lived and and are living it. Right now, work sucks, everyday life is a drag. intimacy is gone (because of me) and I need drugs to sleep. darn it..... I need some good news......Hey wait, the Phillies beat the Nats last night, so a little good news!

so here goes, who's with me..........

I AM GOING TO WIN! I AM GOING TO SURVIVE! I AM GOING TO LIVE! I AM GOING TO THRIVE!

Your brother,

J