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I just got the bad news....40 years old

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I just got the bad news....40 years old  
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Mrbaseball220
Regular Member
Joined : May 2017
Posts : 65
Posted 8/8/2017 9:47 AM (GMT -7)
Just back from Dana Farber and seeing Dr. Nguyen (A radiation Dr.) and he basically told me that my best bet was surgery. He said with my particular case and age that he'd have to do a triple play of Lupron, Hormone treatment and Seeds to get the same result as surgery. He said by the time I do all 3, i'd have worse SE's then surgery. He also mentioned that my past surgeries could potentially lead to all kinds of strictures (increasing the need for more cystoscopies etc.) He said in "99 out of 100 times in my case and my situation he'd recommend surgery."

I think that's pretty telling......Thoughts?


In my mind, the decision has been made and I have 3 consults with surgeons later this week. Thanks for all the help!
DX 07/17/17
Age 40
PSA 4/27/17 6.56
PSA 6/23/17 7.59
6 Cores Positive of 12 Gleason 7 (3+4)
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paulmerc
Regular Member
Joined : Aug 2016
Posts : 57
Posted 8/8/2017 10:02 AM (GMT -7)
Well, you know my experience, check out my longer explanation in this thread - hopefully I got the page number right

https://www.healingwell.com/community/default.aspx?f=35&m=3869854&p=2
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Mrbaseball220
Regular Member
Joined : May 2017
Posts : 65
Posted 8/8/2017 10:23 AM (GMT -7)
You got the page right Paul and thank you for reminding me about your story. I was quite surprised it happened this morning. Also, thank you for sending along all the information you did via email!
DX 07/17/17
Age 40
PSA 4/27/17 6.56
PSA 6/23/17 7.59
6 Cores Positive of 12 Gleason 7 (3+4)
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Pratoman
Forum Moderator
Joined : Nov 2012
Posts : 6634
Posted 8/8/2017 5:27 PM (GMT -7)
When an RO tells you surgery is best, and explains his rational, it's probably a good idea to listen to him. Especially an RO at Dana Farber.
Good luck with the surgeon meetings.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margivns, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat in Feb 2017, still .02. May 2017, <.1 (lab did standard test). Retest May 2017-.033, (new lab). Next test, September Decipher test, low risk, .37 score.
My Story: tinyurl.com/oo9x4aq
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halbert
Veteran Member
Joined : Dec 2014
Posts : 3844
Posted 8/8/2017 5:42 PM (GMT -7)
What Pratoman said.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
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dude1969
Regular Member
Joined : Jul 2011
Posts : 428
Posted 8/8/2017 7:03 PM (GMT -7)
My uro is both a urologist and an oncologist at Hopkins. He suggested that surgery would be better for me too. I was 42. I consulted with another Hopkins onco before deciding on surgery. He was just as confident that he'd cure me with radiation, but he was worried about my age. "You're young and in good shape. You'll heal from the surgery and be back to mostly normal function in 3-5 years." What about years 1-3?! "You'll be fine there too. You might need some help from meds with erections during that time, but you should be functional within a short time. And within a few weeks you'll be totally continent. Basically, within 5 years, you should regain all function and to the level where you were before surgery." He was very confident of those statements. And I'm proof that he was spot on accurate. 5 years out and I never drip (never did) and I only take a half viagra as a safety net about 25% of the time. I count myself lucky, nevertheless.

Also, I wanted to mention something that he said to me that I recalled as I typed this. I asked him about the significance of the number of positive core samples. He said it was inconsequential in most cases. He said that as he knew that I had a nodule so he aimed for that a number of times to try to get a clear picture of the stage. So maybe 5 of the 12 samples were near the area of the nodule and then a couple others in generally suspicious areas and a few remaining on the other side in an attempt to see if I had bilateral disease. All the samples on the nodule side were positive and the others were not. But pathology proved it was bilateral and also 3+3. Percent of the core is more important, imo.

Anyway, good luck.
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Mrbaseball220
Regular Member
Joined : May 2017
Posts : 65
Posted 8/14/2017 12:19 PM (GMT -7)
Just got my 3T MRI results in and this is what the Radiation Doc said:

Good news is that your MRI shows us no surprises. There is a 1cm tumor visible. Everything appears to be contained in the prostate.

This means there is a very high chance of cure with surgery and I would suggest you continue with the plan to have surgery.


IMPRESSION:
1. Focal lesion within the left mid peripheral zone, 1.0 cm
(PI-RADS 4).
2. No evidence of extraprostatic extension. No pelvic
lymphadenopathy.


Now I just need to choose which Surgeon it will be. Not an easy decision!
DX 07/17/17
Age 40
PSA 4/27/17 6.56
PSA 6/23/17 7.59
6 Cores Positive of 12 Gleason 7 (3+4)
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Tudpock18
Forum Moderator
Joined : Sep 2008
Posts : 4427
Posted 8/14/2017 1:39 PM (GMT -7)
Mr. B, you've done your homework and made an educated decision. Good for you. I'm sure you will be equally diligent in choosing your surgeon. Looking forward to hearing about your many years with the new "C" word, that is CURE.

Jim
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-9 yr: 1. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
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Pratoman
Forum Moderator
Joined : Nov 2012
Posts : 6634
Posted 8/14/2017 4:25 PM (GMT -7)
THT is very good news MrB
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margivns, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat in Feb 2017, still .02. May 2017, <.1 (lab did standard test). Retest May 2017-.033, (new lab). Next test, September Decipher test, low risk, .37 score.
My Story: tinyurl.com/oo9x4aq
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 10368
Posted 8/14/2017 4:36 PM (GMT -7)
Good news. Choices can be hard.

At this point, just get it done.

Andrew
I'll be in the shop.
Age 57, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post
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Skypilot56
Veteran Member
Joined : Mar 2017
Posts : 893
Posted 8/23/2017 1:17 PM (GMT -7)
Mr Baseball I saw in another forum you were asking about miles walked I had probably walked a total of 6 miles by time I had the catheter out and by 4 weeks somewhere around 150 miles I think that was the largest contributor to regaining almost total control of my incontinence I'm 6 months out next month with about 99.5 % control

Larry
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Pathology Report: Gleason 9, Seminal vessels and one nerve cancerous and removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
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Mrbaseball220
Regular Member
Joined : May 2017
Posts : 65
Posted 8/23/2017 1:33 PM (GMT -7)
Wow Skypilot.....so you did about a mile per day while the catheter was in and then once removed you were doing 4 plus miles 7 days per week?
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Skypilot56
Veteran Member
Joined : Mar 2017
Posts : 893
Posted 8/23/2017 10:53 PM (GMT -7)
I would walk several times a day the day before I went to get catheter out I walked 2 miles. I didn't walk every day but did a couple of ten miles not fast or would do like a 3 in the morning and a 2 in the afternoon. Before surgery I had put on a couple hundred miles of snowshoeing n did lots of cross country skiing
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Pathology Report: Gleason 9, Seminal vessels and one nerve cancerous and removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
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paulmerc
Regular Member
Joined : Aug 2016
Posts : 57
Posted 8/24/2017 9:18 AM (GMT -7)

Mrbaseball220 said...
Wow Skypilot.....so you did about a mile per day while the catheter was in and then once removed you were doing 4 plus miles 7 days per week?

Prior to surgery, I was walking 4-5 miles a day and running about 2 miles every other day. That and trying to get a few pounds down and doing situps, leg lifts and starting to do some of the keggle exercises.

After the surgery with the catheter in, I got up daily about once every 2 hours, tried to walk around for at least 15 minutes each time. Having the catheter in took a bit of getting used to but actually not having to pee was oddly REALLY nice!. I worked up to about 10 minutes every hour by the third day, and was back outside and walking about 1 mile by the afternoon of the third day. I simply made a sache from a bathrobe, tied the bag to it (make sure the bag is well below your mid thing or else it won't flow out of the bladder easily), put it over my shoulder and walked around the neighborhood. First just back and forth in the circle, then out to the main roads up and down. Stepping up and down stairs and things was the hardest part. By the day I had the catheter removed (nine days) I was walking about 2 miles a day and had no problems of course getting to the hospital (driven, they don't want you driving with the catheter in). Once it was out, it was FREEEDOM!!!!

Walking progressed as expected and recovery followed. I sort of missed the bag a bit, it was terribly simple to just DRINK DRINK DRINK (tea, water, juices, no coffee or alcohol) and only fill the bag and then have it emptied (wife did it for the first 2 days since I didn't want to get up that often - god bless her) and then I just took it into the bathroom myself after that. It was fine. I ended up leaving the BIG 2L bag on most of the time as I was pushing about 8 liters a day and it was much easier to let that one fill and then empty. (pro tip, get yourself a 2-3L plastic drink pitcher at the store and just use that by the bed for the first few days to empty into and then dump the pitcher into the toilet. Hopefully, you'll have a helper for the first couple days. It's not a messy job, just an unusual one.

Also, as I was pushing so much fluid (recommended) I would set an alarm for the middle of the night to 1) empty the bag, as it will back up and that is uncomfortable and can be problematic)
2) take some of the pain meds, either the real ones or the ibuprofen and acetaminophen (you'll take both in serial most likely) KEEP ahead of the pain and the bag filling for the first 3-5 days.
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bdubs60647
Regular Member
Joined : Feb 2017
Posts : 22
Posted 8/24/2017 4:19 PM (GMT -7)
Hey Mr. Baseball,

Sorry about the news. I had a similar diagnosis and similar aged children, 10 and 8.

You will have many treatment options, all with similar recurrence rates and this is a slow moving disease. Its not just a matter of educating yourself about the disease and treatment, you also have to learn about your own feelings about quality of life vs length of life, etc.

In the comments I saw you have been offered a ton of detailed experience. Its a wonderful group of people with valuable insights. I have a different suggestion for reading which is "Invasion of the Prostate Snatchers" by Scholz and Blum. It has a very different perspective on this disease.

56 years old
PSA 4.5
Gleason 7(3+4) on left side
Gleason 6 on right

Had focal HIFU therapy 05/05/17 on just G7 lesion
PSA after 3 months 1.98, DRE normal
No side effects
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