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Giraffe's Prostate Cancer Journey Record - 57 yr old; 3+3 (4 cores of 14); 3+4 (1 core 5%): RALP tbd

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Posted 4/5/2018 3:48 PM (GMT 0)
Going to being posting where I am and where I think I am going. Any feedback and discussion is quite welcome!
I plan on keeping a record as I go through this PCa affliction.

I am now scheduled to follow-up with my doctors and decide on either RT or RP.
My mind is pretty made up for the RP, based on my age and health and long-term goals.

Here are my numbers:

7/25/2015
PSA ultrasensitive reading 3.760 (LabCorp, via my PCP)
7/11/2017
PSA ultrasensitive reading 3.970 (LabCorp, via my PCP)
10/11/2017
PSA ultrasensitive reading 4.020 (LabCorp, via my PCP)
11//2017
PSA reading 3.7 (LabCorp, via urologist)
Free PSA: 0.46 ng/L
Free Pct: 12.4%
The table below lists the probability of prostate cancer for
men with non-suspicious DRE results and total PSA between
4 and 10 ng/mL, by patient age (Catalona et al, JAMA 1998,
279:1542).
% Free PSA 50-64 yr 65-75 yr
0.00-10.00% 56% 55%
10.01-15.00% 24% 35%
15.01-20.00% 17% 23%
20.01-25.00% 10% 20%
>25.00% 5% 9%

12/15/2017
Biopsy 1: 12/15/2017
Pathology 1 12/29/2017, Shiel (LabCorp): 2 cores 3+3 10%, 5%; 2 cores 3+4 20%, 35%
(I had a second opinion done on my first biopsy 12 cores, hence 2 pathology readings)

1/23/2018
Biopsy 1: 12/15/2017
Pathology 2 01/23/2018 (second opinion by MSKCC) 6 cores 3+3 8%, 20%, 4%, 40%, 4%, 10%.

PSA reading 4.1 (MSKCC)

3/13/2018
Biopsy 2 14 cores: 4 cores 3+3 40%, 5%, 50%, 40%; 1 core 3 (40%) +4 (5%)

Uro onco recommends treatment ASAP due to 3+4 detected.

4/2/2018
Radio onco consultation; recommends brachy seeds

PSA reading 3.27 (MSKCC)
Posted 4/5/2018 4:24 PM (GMT 0)
Welcome to HW, sorry you need to be here.

Brachy seeds would be a good choice. So would SBRT. So would surgery. Honestly, any of those would be curative at this point. Seeds and RT do avoid the bigger SE and trauma of surgery.

But it's your choice,
Andrew
Posted 4/5/2018 6:27 PM (GMT 0)
Good luck. Has there been any discussion as to what the recommended time frame for an intervention if that is indeed the case?
Posted 4/5/2018 6:55 PM (GMT 0)

giraffe said...
I plan on keeping a record as I go through this PCa affliction.

I am now scheduled to follow-up with my doctors and decide on either RT or RP.
My mind is pretty made up for the RP, based on my age and health and long-term goals.

I have somewhat similar numbers and I leaning towards some sort of RT. I have other issues with an enlarged prostate that may limit the type of Radiation available. Why RP for you, I am just curious? As was said by Andrew (above) the possible long term SE of surgery have me concerned as I am still fairly young and sexually active etc. yeah
Posted 4/5/2018 7:27 PM (GMT 0)
See responses at this other recent thread:

/www.healingwell.com/community/default.aspx?f=35&m=3998602

First, slow it down. With your "low intermediate risk" PC especially, you have the luxury of time to come to a well thought out decision. I met with 6 specialists and took 9 months to make a decision. You can too.

You have only a very small amount of Gleason pattern 4 in one core (5%). Many active surveillance programs would take you with that. I suggest you get a second opinion on your second biopsy from Epstein's lab at Johns Hopkins - they are the Gold Standard.

If, after a few months, you decide that active surveillance is not for you, your best options are surgery, both kinds of brachytherapy, and SBRT. Michael Zelefsky at MSKCC would be an excellent person to talk to about both seeds and SBRT.
Posted 4/20/2018 3:20 PM (GMT 0)
Thanks for responses, I wasn't notified of them so did not think anyone replied yet!
OK so not sure what is meant by "intervention" above?
I am going with RP as I do not like the RT in general. The brachy seeds caught my attention as they can be placed locally with what seems minimal collateral damage. Also, I am young and fit and feel that I can come back from the surgery - my brother had it done 8 years ago or so. He needed SRT and said he would never do that again, seems to have really messed him up. He's total ED but never an issue with continence. MSKCC surgeon will do the RARP. Just got a call from them with a May 2nd date. Wow. I really need to just push through and get it done - appreciate any and all feedback but realize we are all different and need to take all things into consideration. Praying for all my brothers dealing with this!
Posted 4/29/2018 7:56 PM (GMT 0)
Met with my surgeon last Thursday April 26th. All set to go for RARP this Wednesday May 2nd. Preparing, reading up, getting ready. MSKCC Manhattan is the location.
Posted 4/29/2018 9:28 PM (GMT 0)
Giraffe, good luck on Wednesday. You are in good hands at MSKCC, and with your pathology, chances are you’ll come out the other side with a very good outcome.
Keep us posted.
Posted 4/29/2018 10:45 PM (GMT 0)
Giraffe, your numbers are very similar to mine at the time of diagnosis, and I wish you luck next week. You have every chance of a great outcome.
Posted 4/29/2018 11:33 PM (GMT 0)
Giraffe,

I sense that you feel super rushed to make your decision, seemingly for no rational reason. I encourage you to take Tall Allen’s advice and slow it down. This may be the biggest choice of your life. On the other hand, you seem determined and I respect your choice and wish you good luck.
Posted 4/30/2018 12:39 AM (GMT 0)
Thanks for replies. I was diagnosed January 2, 2018. Constant research and learning since; joined PCa support group (Us Too on LI NY); second opinion at MSK 1/24/2018; MRI at MSKCC in March; confirmatory biopsy late March; decision for treatment in April. Also met with 2 radio Dr's, discussed various RT's. My MSKCC surgeon initially was desiring AS, but switched after confirmatory biopsy showed 3+4 core (20%, 5mm).
Would love to avoid treatments, but also seek to take action to prevent further advancement. Recent testosterone check was 180, first time I am knowing this number, seems pretty low. Research of that I seem to get mixed signals - could be a sign of potential aggressiveness now or in near future. Which seems to contradict what I've heard that PCa is actually driven by high T?
Thanks all for your feedback, praying you are all fighting well!
Posted 4/30/2018 12:51 AM (GMT 0)
just go with it you made your decision...turn the corner on that...you are gonna be fine...just like the vast majority of everyone on this forum and the many who have put it behind them as well that no longer post...like the medical system...this forum at times can grab you by the big toe and hold on...hold on...tillyou finally kick em free...no shame... there is always gonna be a "yeh but"...I broke my sons of those 2 word at a very early age...they thank me to this day...you have your faith...that's really all you need...ain't that right...ain't that right...live in that...begone the other...
Posted 4/30/2018 12:52 AM (GMT 0)
Giraffe, sounds like you really have done all the work, nd. One to a reasonable and measured conclusion. Sounds like a similar path to what I did. 2 RO’s (including one at MSKCC on Long Island, 3 Surgeons.

Good on ya. Best of luck keep us posted.
Posted 4/30/2018 5:04 AM (GMT 0)

Giraffe, you said...
Recent testosterone check was 180, first time I am knowing this number, seems pretty low. Research of that I seem to get mixed signals - could be a sign of potential aggressiveness now or in near future. Which seems to contradict what I've heard that PCa is actually driven by high T?

Prostate cancer may actually be a bit more common in men with low T levels. Some studies have shown low T to be a risk factor for PCa but other recent studies have found that T level doesn't seem to make any difference at all.
Posted 4/30/2018 11:52 AM (GMT 0)
Thanks guys, yep been a journey for sure - have to say that knowing God is sovereign has been my only true comfort and peace. Thanks PeterDisAbelard that seemed to be the conclusion I was drawing from my research - yes, no, maybe so, and indeed studies appeared to conclude that T levels are inconclusive. Do you or anyone have more info on T levels? Do they fluctuate like PSA in any way, for some reason? I think that I have only the one T result in my life. Kind of heartbreaking weekend for me, my last chance possibly for doing the act with my wife and, first time EVER I could not perform. Felt horrible. But in retrospect there are so many reasons why, I'm not getting down on myself, just too many reasons it didn't happen... Praise the Lord all my brothers...
Posted 4/30/2018 1:38 PM (GMT 0)
Giraffe,

T levels do fluctuate somewhat and low levels can cause problems in the bedroom but lots of guys do fine with surprisingly low levels. It's good that you have a baseline T level from before you started treatment but now that you have it I'd file it away carefully and ignore the heck out of it. It would be quite the coincidence if a low T level were to suddenly cause erectile problems a few days before prostate surgery when a man is scared half to death. You are anxious and that "possibly my last chance" notion is pretty much guaranteed to flatten any man's tire.

It almost certainly won't turn out to have been your last chance. You have a good surgeon and while your chances of getting back where you were, sexually, are not so great, your chances of getting back where you need to be are nearly a sure thing. This isn't the end of the road, it just gets a little bumpy for the next little bit.
Posted 4/30/2018 5:14 PM (GMT 0)
Sounds good, thanks. Any suggestions on preparing for the surgery as far as diet goes? I'm hoping to avoid bathroom issues as much as possible! In other words I'd sure like to have a bowel movement ASAP post-OP! Not to rush anything, but I don't know what to expect. Should I avoid food altogether the day before to give the bowels a rest, or try to eat something 'easy' to get something to pass soon after, or ??? Thanks so much!
Posted 4/30/2018 5:14 PM (GMT 0)
giraffe -
Good luck on Wednesday!
Just curious, why the testosterone check? What difference does it make knowing it? I have never checked my T.
Posted 4/30/2018 5:15 PM (GMT 0)
Gemlin, the T check was done as part of my pre-surgery check-up. They took vials and vials of blood. I suppose as Peter states maybe it was as a baseline check prior to treatment?
Posted 5/4/2018 4:35 PM (GMT 0)
I'm recovering from RARP on Wednesday May 2nd. All seems to have gone well. I had Dr. Vincent Laudone at MSK perform the surgery. Great doctor. Keeping fit seems to have helped. Low carb (99% of all carbs coming from veggies) high natural fatty diet, intermittent fasting. Looking forward to full recovery.
Posted 5/5/2018 10:33 AM (GMT 0)
giraffe, welcome to the other side. First suggestions: Walk walk and walk more. Drink plenty of fluids (especially water). It will mean you'll be emptying the bag a lot, but keeping things flushed out is vital.

Here's what I did:

Positioned the recliner in easy reach of a small table with my water mug (those hospital water mugs are really nice), my tv remote, and some light reading.

Got up every hour or so to walk to the kitchen and back

Slept downstairs (didn't want to try stairs with the leash)

After a few days, cabin fever got me pretty hard (midwinter for me), so I put on the leg bag and had my bride drive me to home depot. I pushed a cart around for a half-hour or so, and went home and crashed.

Sleep when you need to.

Eat plenty of fiber, take your stool softeners. When you feel the first dump coming on, DO NOT STRAIN, just let to go when it's ready.

Get off the opiates as soon as possible--they cause constipation.

Relax, heal, it will be a distant memory before you know it.
Posted 5/6/2018 12:18 AM (GMT 0)
Thanks halbert. I am fortunate to have nice weather here on LI NY and was happy to be getting out and walk walk walking! The energy level is a bit low, but pushing myself a bit.

The ball and chain is trying (foley). Stepped on the tube to the night bag this AM trying to get ready to shower. Thought I may have jarred it loose from the bladder! All seems to be well though, except that I do now have discharge from the foley entry site, since that is to be expected I am not concerned.

I had my first bowel movement happen the evening after surgery, very thankful for that. Building up the fiber and taking the colace too, as well as magnesium citrate, small amount.

Really appreciate your reply and glad to see you are doing well with the numbers, great! God bless my PCa brother!

Cannot wait to get this thing out!
Posted 5/7/2018 2:09 AM (GMT 0)

giraffe said...

Cannot wait to get this thing out!

My Doc friend said that no one ever cancels their appointment to get that thing out. "Thanks" for that stepping on tube reference. Brought back "memories". Glad you are doing well.
Posted 5/7/2018 3:54 PM (GMT 0)
OK I'm not surprised that I'm not alone on that stepping on the foley tube thing! It seems really simple but just have to get used to all of it, which I am now, taking it slow as I change bags.

QUESTION: I am day 5 post op and been having a feeling that I think is from my bladder like I have to go, which seems odd since I have the foley cath in. It started when I think my bag was really full to bursting, and maybe my bladder started to fill? Now I just have that feeling every once in a while like I have to pee, never too bad, just low-level feeling. Anyone get that?

Thanks.
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