Lymphedema after prostate cancer surgery

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tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/6/2010 9:20 PM (GMT -6)   
Not really worried but looking into the effects of Lymphedema due to cancer surgery.

I have been a big guy for a while - working out at the gym on a regular basis - have had to stop that prior to surgery and worked on losing weight.
Went down to 234# from 255# at time of surgery - after surgery - Nov 2009- I was 224# - by Jan 1 up to 234# again - 240# by Feb 1 and now topping off at my old weight of 255 today. Not pleased.

I am not overeating but not physically active as I used to be. Haven't calculated my calorie intake, but doing my best to avoid salts, red meat, white bread and those other delightful nasty things that add to the poundage...

After surgery, I had a short term but nasty case of lymphedema in the scrotum ( 3 x the normal size - oowwww! ) which resolved itself with tight underwear and raised legs in bed for three days ... my waist and legs have increased in size along with my weight - about 3 inches - waist - 38->42" and legs 23->25" - upper body has not changed -chest, neck, arms are the same ...

It could be just my inactivity - due to the weather and incontinence - I plan to start walking more next week on a regular basis ( instead of using the car for short trips) and cutting back further on my carbs - can't get into running due to scoliosis - so endurance is what I will be working towards - as well as increasing my metabolism.

Has anyone on this site had to deal with lympedema due to radiation or surgery for prostate cancer?

I did an archive search and was not able to find a topic posted on this subject prior to this message.

thanks
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 3/6/2010 11:06 PM (GMT -6)   
Bronson, Yes I had Lymphedema after open Radical. Testicals were so large it was uncomfortable to sit. Like you legs in the air on my back with Ice in place fixed the problem. After the fluid went down back to reg size. End of story.

Cajun Jeff
AGE:58, 57dx. PSA 5.4
Biopsy: 9/08 Gleason 3+4=7
open RP: 10?08 Nerve sparing. Path Report : GS 3+3=6 Stg pt2c margins clear
Cath for 10 day. Dry day after removal of Cath
PSA @ 3 months <0.1
6 months <0.1
9 months <0.1
12 months <0.1
16 months <0.1

ED Started VED at 3 months, pills followed VCL none did much, tried MUSE at 9 months (YUCK) Hated it. 15 months out injections Caveject (succecc)


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/7/2010 4:52 AM (GMT -6)   
Jeff - I am pleased for you - I have had no problem since with the scrotum.

The extra weight and size in legs & waist ( my chest size has gone down 52"->50 and belly/gut from 54" ->49" ) could be due to a slower metabolism.
My B.M.'s and passing fluid are still irregular at times... so will just do my best and start increasing my metabolism again.

Have been overly cautious in my healing period since my artwork requires me to use a router (free hand - no jigs) about a half hour to an hour at a time -carving into pine.. and my summer job requires me to lift shrubbery and trees ( in pots) for customers. Didn't want to mess up what is going on inside of me due to vibrations and jerking motions like lifting / dragging the trees, etc...

hugs
BRONSON

p.s. post edited -add on -- in the past I have had trouble processing proteins - such as supplements for bodybuilding and working out .. made my right leg swell up an extra 3 inches at calf and ankle - it went back down to normal in a weeks time after stopping the supplements - I do take vitamin c with bioflavinoids - to break down protein crystals that can lead to gout ( which runs in my mothers side of the family - my male cousin - age 49 has it) - also surgery to the right leg and the hardware left inside is supposed to slow down things and have that leg larger than the left one - mind you - the left one is the larger leg this time!
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............

Post Edited (tatt2man) : 3/7/2010 7:39:02 AM (GMT-7)


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 3/7/2010 11:01 AM (GMT -6)   
Tatt,

I too had a sort of U-shaped curve for my charted weight from before -after and back to now (a year plus later).

I track my weight daily --plus was doing LiveStrong.com weight and daily plate so it has a nice graphical report that can go back as far as you wish.

During the month after surgery i was down to a low of 192 (from around 200). Then started back up again. Since Thanksgiving I've gained another 3-5 lbs over the 200, but figure with spring and outdoor chores it'll settle back down again.

Hope no one minds the plug for LiveStrong ... it nice a pretty nice tracker -- fast and easy to do from wherever u have computer access.
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- (no effect yet 02/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09-09/09 MUSE@1000mcg (alpro ache) @500mcg -- less ache.
10/09-11/09 TrimixGel@(500/300/100mcg): 60, 70,80%,
02/10 TrimixGel@1000/300/100mcg - 80-90% - (with cialis) - just @ usefulness.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/7/2010 1:32 PM (GMT -6)   
Bronson,

I have had the opposite problem, I lost around 35 lbs during the first 90 after my open surgery. I gained back 20 of it over the next 6 months or so. During my 2 months of radiation, I neither gained or lost. Now that radiation has been over for more than 2 months, I am back to losing unexplained amounts of weight. Please note, I have made no dietary changes, I eat what I want, but even I can tell that I am not eating as much at a time as before, not on purpose, just because I am not hungry. I do indulge in chocolates and sweets, my one sinful pleasure, I would guess I would be even losing more if I laid off the sweets. Mentioned this to my doctors, but none of them seem too concerned at this point. If I am hungry, I eat, just can't seem to stomach a whole bunch at one time anymore.

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
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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/7/2010 3:03 PM (GMT -6)   
Many thanks Jimstars and David for your support

Jim - I will look into that site for weight report - it is because I am not indulging that has me worried - I was thunder-thighs as a kid and would wear out the srtipes on the corduroy pants - husky size - argh! - don't want to go there again - If I was gaining everywhere that would be just metabolism....

David - you are losing weight simply because of the physical stress you are under - emotional and financial and physical...
- you are burning it off before it can be converted to muscle or fat or pooh or pee ...

When my first companion ( John) was going downhill due to his alcoholism ( he died in 1996), I was so stressed out I would lose 5# each night just due to stress .... now I am very content with my Steve ( LOL - after 13 years together I better be content ! ) and where I am in life ... also on the CPAP machine for my sleep apnea ( obstructive and central) so my body is not so stress when I sleep ...

And I agree with the doctors ( but would prefer you to have a more balanced nibble source) and eat when you want and just go with the flow...

hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/8/2010 7:30 AM (GMT -6)   
hiya - have done more research online and double checked personal tests ( poking legs with fingers ) and the results are in

- I AM FAT - :D

A little knowledge (as we all know) can be a dangerous thing ... I just have to get up off my arse now that the incontinence is becoming more under control....
- so down to 250# this morning - yesterday I was 255# at same time of day ( no kidding) - goal is 200# for my cholesterol, blood pressure, scoliosis , degenerative spine, osteopenia, sleep apnea, bladder control... (also, I'm cheap -1/4 Scot - and have all these clothes from back then to wear..)

silly fat hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 3/8/2010 9:18 AM (GMT -6)   
Yep Tat ... we were all just too polite here to say anything (figuring maybe you were 6 ft 10 ) -- hah smilewinkgrin

Now go forth and forgo til it's gonefor good!
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- (no effect yet 02/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09-09/09 MUSE@1000mcg (alpro ache) @500mcg -- less ache.
10/09-11/09 TrimixGel@(500/300/100mcg): 60, 70,80%,
02/10 TrimixGel@1000/300/100mcg - 80-90% - (with cialis) - just @ usefulness.

Post Edited (JimStars) : 3/8/2010 8:23:53 AM (GMT-7)


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/8/2010 9:31 AM (GMT -6)   
Tattman, I've noticed that some dress socks now leave sizeable indentations in my ankles. I've had both surgery and radiation. I didn't notice it until after radiation. My radiation doc says that those particular socks are just too tight, and I suppose that's possible. (You know, the "gold toe" socks with the elastic at the top).

My primary care doc also wasn't too worried after examining me and running a CBC, and I had forgotten about it until I saw your note.

I'm also overweight and I've read that some lymphedema just comes with age.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 3/8/2010 10:36 AM (GMT -6)   
Jimstars -thank you for your humour - you can imagine my surprise at my pre-op physical when my doctor told me I was only 5'-10" - I was 6'-2" in high school - but after surgery for broken right leg -1998 - the drivers licence people pegged me at 6'-0" in 2000 - an doc had me at 5'-10 in 2009... the right leg is 1-1/2" shorter now - curved spine due to scoliosis and degenerative bone disease - my mother shrank 4" - dad did about the same ... so I am no longer 6 foot two eyes of blue ... no wonder I am rounder than before !!

-also - right leg does swell up to the previous surgery and having the metal rod still in there - 4 spiral fractures in upper femur ( two inches from the ball joint) - upper pins and excessive bone growth removed in 2007 - had a lot of x-rays of that leg and hip - over 20 in 1998 -

Galileo - the diabetic socks work well for swollen legs - and the shortie sport types are what I wear now

slimming hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............

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