My RT is over - some numbers and thoughts

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English Alf
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Date Joined Oct 2009
Total Posts : 2217
   Posted 6/18/2010 12:36 PM (GMT -6)   
So guys and ladies. A week after my radiation therapy in Amsterdam finished I was thinking about a few related observations, details and numbers to crunch.

The obvious stat is that I had to go to the hospital 33 times for 66Gy or radiation. (Plus there were two visits beforehand: one to see the doc and another to get told about the system and have a CT scan.)

With doses from seven different directions each time that was as total of 231 blasts.

I also had two control x-rays on the first day and at 5 day intervals and then extra control x-rays towards the end when a variation was noted. I think that made a total of 18 x-rays.

Travelling for the RT thus involved 33 return journeys by public transport as follows:
-66 tram/streetcar journeys in The Hague.
-73 train journeys. 3 of the 66 journeys did not go according to the timetable due to signaling/track problems so I had to use 7 trains in addition to the basic 66, but otherwise all the trains except one ran on time. I also had a seat on every journey and was able to use the WC on every train except one
-51 Bus journeys in Amsterdam, It was only 51 not 66, as at the beginning I was able to walk from the station in Amsterdam to the hospital and back, then for a few days I was only able to walk one way and then I was too tired and had to take the bus both ways.

When I used the tram/train/bus combination it still involved walking about 1500 yards each day (from my apartment to the tram halt and back; from the tram to the train and back in The Hague; from the train to the bus station and back in Amsterdam, from the bus stop to the hospital and back.)
When I walked from the station to the hospital or vice versa it was about 1500 yards each way.

The total distance travelled was around 4500km (2800 miles) it was about 120km each day plus diversions

The total cost of tickets was about 460 euros (370 euros of which should be paid by the insurance company)

I drank about an extra 11 litres (or about 16 ½ pints)

I saw three different doctors, and lost count of the number of nurse/technicians who positioned me on the table. (One of them told me that there were about 120 staff in the department and that I probably saw about 20 of them. about one in five of the staff were male.)

My wife came with me just twice, once to see what happened and once to keep me company when she had a day off.

I read 64 free newspapers on the train (one day was a public holiday so there were no free papers at the station) I also glanced at about 200 old magazines in the hospital waiting areas. And met about 200 other cancer patients, but only a few PCa guys, as the hospital is a specialist cancer centre and treats everything all mixed in together. Seeing others with cancer, many of whom did not look well was on the one hand distressing but in a way strangely reassuring. There was no upside however to seeing a couple of young mums with no hair etc.

I started on 26th April and finished on 11th June and there was only one day when it rained on me, and that was the very last time I walked back to my apartment on the very last day, there was also one day when rain made the train wet.

Additional time-and-motion observations since the side effects hit are that having 4 BMs a day uses up about 20 minutes of the day and having to pee every 30 minutes or so uses up a further hour. I only had the tiniest of leaks towards the end and rather than end up with embarrassing damp patches on my clothing I used up 1 pad each day on the final 11 days.

I should get a life.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 6/18/2010 1:11 PM (GMT -6)   
Alf,
Glad that it is over for you, and soon life will return to as normal as it can be. That was quite a commute for you so that had to take some energy out of you. Rest up and keep us posted on your next PSA.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 6/18/2010 1:15 PM (GMT -6)   
Alf, it's good to see you are done with that, now you can return to a less traveled lifestyle, unless you have caught the wander bug.lol Wishing you the best in your upcoming testing.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 6/18/2010 2:29 PM (GMT -6)   
Alf,

Glad your RT is over and I loved all your numbers! But I must say that I can't feel too sorry for your travels between the Hague and Amsterdam-both lovely places-it could have been worse. My husband worked in Rotterdam a dozen years ago and I well remember the train rides. The weather must be lovely there now-we're in danger of spontaneous combustion here in Florida. So, relax and have a wonderful summer .

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%
Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10
 


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 6/18/2010 3:10 PM (GMT -6)   
you say you need to get a life: sounds to me like you did all this so you HAVE a life ...glad the process is over for ya, looks like i have today's treatment, then a full week next week, and THAT'S IT!!
looking forward to that time...
hoping you have success with your procedure
bob
 

Age@dx: 55

5/05             PSA test 1.8  --12/19/07  PSA test 3.7  --7/25/08    PSA test: 4.7

8/26/08        1st Prostate Biopsy: 3 samples out of 6 have irregular cells

11/25/08      PSA test: 6.5

12/11/08      2nd Prostate Biopsy :  of 12 samples, 3 are cancer, and all other 9 are irregular.  original NJ lab sent samples to Johns Hopkins for special reading.  Gleason 3+3=6.  now:read book, and think about options: radiation, surgery, etc

1/22/09        Radical Retropubic Prostatectomy.  main issue was use of BOTH pre-donated units of blood during surgery, and then required 2 additional units in recovery, before going to room

1/25/09        Released from hospital. No drive, no lift >5 lb

1/28/09        Pathology results from removed tissue:  Cancer was seen on 10% of gland, lymph nodes & SV were benign, nothing seen outside of the prostate.  One area of cancer extended right up to edge, but not beyond.  Gleason was re-typed as 3+4=7, staged T2c

2/13/09        PSA=0.1

3/6/09          6week appt, start back to work Monday, 3/9.  script for Cialis

6/8/09          PSA=0.1

10/9/09        PSA=0.1

2/10/10        PSA=0.3 discussed possibility of radiotherapy and/or hormone.

4/7/10          PSA= 0.4  Recurrence of the cancer is probable. Referred me to RO

5/4/10                   First RT.  RO is recommending 37 treatments x 1.8Gy=66.6 Gy


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7080
   Posted 6/18/2010 3:10 PM (GMT -6)   
Alf,

I guess the biggest differences were:

More trips (more sessions) and more Gys;

Driving, only a 20-mile round trip, although 2 miles each way are heavy construction zones with heavy police enforcement, so anything was possible, and most things happened;

Driving, which got to be a serious chore as fatigue wore on - because of the construction, it was a 40-45 minute drive each way, not counting the mid-trip stop at the grocery store on the way home - they have good "facilities", so I wound up shopping a very little every day - hated to pee and flee;

I discovered that my in-town traffic gas mileage is pathetic (have not been on the highway since this started);

Two days were made a little more exciting by Biblical downpours and threatening tornados;

One day was delayed because of equipment, but got the session in later;

Started at one pad a day, back to two now;

A couple of bladder disasters as I got used to the water torture;

Discovered that the local station has news at 4, so am not upset to miss the evening news (don't have cable/sat). When the 10pm became too late, I relied on the 5:30pm, but even that is late now;

Had the same two techs for each day except two, when one or the other was out, then the substitute was another one I knew from the staff;

I didn't see a lot of other patients, as it is a small clinic, but did have a fellow PCa guy and his wife to talk to for the first 15 days or so.

I'll have to come back to visit Amsterdam again one of these days.

I guess if we were good patients, and they did their jobs, we did "get a life", or at least a little more of one cool

Post Edited (142) : 6/18/2010 2:14:24 PM (GMT-6)


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 6/18/2010 3:22 PM (GMT -6)   
Hi Alfred,

Congratulations on completing you SRT. I had the same number of sessions and Gys (33/66), but was bombarded from only 3 positions (now I feel cheated). Anyway, hope that the sessions were able to kill off your remaining bad cells.
All the best to you and may all your future PSA tests be zeros.

Magaboo
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/18/2010 4:11 PM (GMT -6)   
Alfred, glad to hear that this part of your journey has ended. Now, what will you do with all that spare time!

Congratulations and well done.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 6/18/2010 4:50 PM (GMT -6)   
Alfred,
I'm glad your hectic travel is over. Now you can relax and hopefully watch your PSA go down to a low undetectable nadir. Good luck
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 6/18/2010 7:06 PM (GMT -6)   
Alf,
Best of luck to you. I love your post.
Hero

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/18/2010 7:30 PM (GMT -6)   
Hope you get through the side effects, good read for others as to what one has to go through to get things accomplished, best to you.

deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 6/18/2010 7:42 PM (GMT -6)   
Alf glad your thru with your rad side effect should ease up shorlty the tireness will take awhile good luck on your numbers
Live life to its fulliest
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. psa the last of 7/09was .55 onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see 3/10 psa.05 5/14/10  family doc done blood work at my request her lab psa .01  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/18/2010 8:41 PM (GMT -6)   
Alf, you are a man after my own heart, with your post full of stats that only a man would sit around accumulating. I drive my wife nuts with stuff like that.

I think you take the cake for total distance and transportation logistics.

For my 39 treatments, drove a total of 507 miles, and based on 21 mpg average with my car, cost me about $ 58 USD in gas. The clinic had free parking, so no expense there.

Aside from the 7-position daily zaps, they took a min. of 2 snap x-rays each day, sometimes as much as 6 in a session due to alignment issues, so that is well over 78 to 100 x-rays in addition to the zaps.

Since mine were done the entire time while using a suprapubic catheter, there was no water volume to figure out.

I never had to delay any of my treatments, but the clinic was closed on American Thanksgiving day, which was the day before my last treatment.

All I know, is I am glad I am long past that, but still fighting daily fatigue from it, and still healing down below from the effects of the radiation.

I will be seeing my uro on Monday, and we are going to see what to do next in the gameplan.

Glad you are through yours, and most importantly, hope that it is effective in the long run.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 6/19/2010 2:25 AM (GMT -6)   
Thanks for all the messages of support.

As I planned by journeys around the train times I was out of the house for almost exactly four hours every day even though the sessions were all at different times (five hours on days when i had to see the doc) I reckoned that the RT phenomenon used up more than four hours of each day as you just can't settle down to do anything much before or after, so I's say that timewise RT used up in total about 200 hours or 8 days of my life.

Yeah the view from the train wasn't too bad. It's mainly towns and industrial zones, but there is a fair bit of farm land and bulb fields too. I started with tulips and Hyacinths in April and ended up with hay-making, plus fields of sheep and cows.

Also saw plenty of wild life: storks, herons, hawks, buzzards, swans, ducks, geese, hares, rabbits (even saw rabbits nibbling away outside the hospital entrance).

Never really got to have much of a conversation with any fellow passengers on the trains as most people on the line get on and off at the intermediate stations (Leiden and Schiphol airport)

Not much summer here this weekend, rain and 14/15 forecast. So no barbecues. And a word of caution about anyone having barbecues: I bought a fancy apron in France last year before surgery, but if wearing an apron it takes 30 seconds longer to get things out to have a pee. 30 seconds used to be insignificant, now it makes all the difference between wet and dry.

Oh the rains stopped and sun's out so must get out for a walk and to buy some groceries (but no wc at my store)
Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak

Post Edited (English Alf) : 6/19/2010 1:45:41 AM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 6/19/2010 6:34 AM (GMT -6)   
Alf,
You are man after my own heart. Like all the great thinkers of the world including: Copernicus, Brahmagupta, Tycho Brahe, et al., you not only took and recorded data but were willing to share it with us.
I'm sitting here with fresh coffee, eating a bagel with cream cheese, and dill and chives just cut from the garden. Your post made my morning even brighter. Thank you for sharing.
We are all richer for your efforts.
Jeff

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 447
   Posted 6/22/2010 1:30 AM (GMT -6)   
Alf,

Love all your stats... I lived 212 miles from the hospital, but lived with some friends who only lived 30 miles away... Ended up being about a 45 minute commute each way... Plus got to totally spoil their 3 1/2 y/o daughter... Had nothing to do each day except rest and relax.

The only stat that I see you are missing is methane gas... During and after the treatments, I have noticed that my intestines are generating a lot of gas... It would be interesting to figure out the volume and how many houses it could heat in the winter, but I cannot get my wife to hold the collection bag to measure the volumes.

Wishing you a lot of upcoming "0"'s... My first post SRT test was very good.. 0.02 at 3 months.

pasayten
After 3-4 years of annual PSA 4-6, biopsy recommended
59 y/o
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
3/12/2010 Finished 32 sessions...  No side effects to date except a little
tiredness.  Slight changes in bowel movements the last week...  
4/8/2010  Some rectal prostitis, but no change in urgency.  No urinary effects at all.  Now just waiting for the upcoming PSA test in June.
6/7/2010 First 3 month PSA result after SRT = 0.02   WAHOO!  as good as could ever be expected at the 3 month mark!  Thank You Jesus!
 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 6/22/2010 7:27 AM (GMT -6)   
Gas stats unavailable as final total unknown, production still ongoing.
Alf
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