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AMS 800 artificial urinary sphincter

Trew
Posts: 892
Joined: Jan 2010

One of many links with a diagram showing the device:

http://www.phoenix5.org/Basics/treatsides/incontinence/ams800.html

Is this the best device now available?

Best place to have this procedure done?

Interviews RE the artificial sphincter:

http://www.delawareurologic.com/audio/#video

I have a good friend who had bladder reconstruction after bladder cancer and he may be interested in one. Hey, some of us PC guys might be interested in one, too, so add as much info as you can about "Control Issues."

harvs
Posts: 54
Joined: Jun 2003

I've had mine for almost 3 years. One of the best moves I've made. Couldn't live without it.

Trew
Posts: 892
Joined: Jan 2010

Harvs, How easy to use is this device? Any accidents or other problems and who installed the device for you?

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

How does this work?

Trew
Posts: 892
Joined: Jan 2010

Gives one the shudders just looking at it, doesn't it? Does me.

And some say its just prostate cancer! Bah humbug!!!

harvs
Posts: 54
Joined: Jun 2003

Got this from the AMS web site
The thing they don't mention is that the pump is implanted in the scrotum.

The AMS 800 artificial urinary sphincter mimics a healthy sphincter in that it keeps the urethra closed until you want to urinate. It does this by automatically moving fluid such as saline (salt and water) through three main components: a cuff, a pump and a balloon. These components are connected by flexible, kink-resistant tubing.

When you need to urinate, you release the pressure on the urethra so that urine can flow. You do this by simply squeezing and releasing the pump. This action pulls the fluid out of the cuff and sends it to the balloon. Because the empty cuff is no longer pressing the urethra closed, the urine can flow out of the bladder.

Minutes after the bladder is empty, the fluid automatically returns from the balloon to the cuff. Once the cuff is refilled, the urethra is squeezed closed again.

Swingshiftworker
Posts: 682
Joined: Mar 2010

OMG!!!!

Thanks for the info but this is just another thing (along w/penile implants) that I hope that I never have to deal with!!!!

lion1
Posts: 240
Joined: May 2007

What about the pressure build-up on the urehtra? Can you feel it? Is it painful? It seems like all the pressure would now be on the urehtra and not on the sphincther. Is the urge to go the same with the AMS??

Thanks,

Lion1

Trew
Posts: 892
Joined: Jan 2010

And what about night sleeping- do you sleep all night or do you have to wake up with a sense of urgency?

Good questions, Lion. Inquiring minds need to know.

harvs
Posts: 54
Joined: Jun 2003

The pressure and sensations are all identical to natural function. The urges and relief are exactly the same. Truly a wonder of modern medicine.

BTW I also have the AMS penile implant and find it excellent also.

These devices really gave me my life back.

Trew
Posts: 892
Joined: Jan 2010

Harvs, you are wonderful for sharing with us. How long did the procedure take to install this device? I am imagining something rather complicated to get the cuff arund the uretha up near the bladder and implant the balloon that holds the saline solution.

Surgery is so much fun, as you probably know.

harvs
Posts: 54
Joined: Jun 2003

The procedure was a little more complex because I had both devices installed at the same time.
It’s been a while, but I think the surgery was a few hours with an overnight in the hospital.
The recovery was a bit tough due to all of the swelling after the penile implant.
No question – I would do it again.

Trew
Posts: 892
Joined: Jan 2010

Harvs, do you need to carry some sort of medical ID just in case you are knocked unconscious- you would not release urine unless someone pushed the start button for you- right?

And did you have to have a cath in a few days after getting the device implanted?

I have no questions about modesty- that all was lost with the first surgery.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Trew, I met one guy at our local prostate cancer support group that had a device put in since he was leaking so bad. Not sure which device he actually had but he loved it. Said it made the world of difference for him. He had it replaced 1 time due to mechanical wear after time. I believe he was in his early 80's. It was remarkable to hear him speak since he has fought the battle against 5 different cancers, Skin, bladder, prostate, testicle and I forget the 5th one.

He was one of the first US Soldiers to go into Hiroshima after the 'bomb' was dropped in WWII and attributes all of his cancers to this.

Larry

harvs
Posts: 54
Joined: Jun 2003

No – there was no catheter as part of the procedure.
There is a Medical ID bracelet to prevent someone from placing a catheter during an emergency.
you are correct, the unit defaults to an “off” or clamped position, so forcing a catheter through would damage the works.

Swingshiftworker
Posts: 682
Joined: Mar 2010

Serious question for future reference:

Were the pump bulbs for both the penile and urinary sphincter placed on the opposite sides of your scrotum AND do they fit in there w/the testes (or was castration necessary)?

harvs
Posts: 54
Joined: Jun 2003

They fit very nicely - one on each side.
No "alterations" necessary.
No discomfort after initial adjustment

iam144
Posts: 3
Joined: Apr 2010

I had the AMS Male Sling plus their Penile Implant implanted on April 1, 2010. I am having a serious urinary retention problem. I can't completely void my bladder. Plus with the implant, my scrotum is very sore when I "pump it up" (2 times a day now).

It just feels funny having the third item inside my scrotum. I can't imagine having a 4th. However, if it would fix my retention problem and keep me from doing an intemittent catheterzation (did I spell that right?). I might approach my urologist about it.

Pointman
Posts: 1
Joined: Jun 2009

I am about 3 yrs post op and quite leakey, after a DaVinci surgery which was converted to open surgery. In my opinion the DaVinci surgery was way oversold by my doctor. To say I am disappointed is an uderstatement. Regarding the AMS 800 AUS (artificial urinary sphincter), if I decide to do this and I am leaning toward it, I will be getting tatoo above my groin. I don't want some nurse ramming a large catheter in me and ruining the device. Just a thought. Doc said it was an excellent idea...

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

This is a concern. The big fear, of course, is if you are unconscious and can't speak for yourself. I've had an AUS for six years. I haven't run into a "regular" doctor yet that has even heard of an AUS -- kinda scarey. If and when you get one, get a medical ID made ASAP. This can be a necklace or bracelet. I also have a card in my wallet and the medical information programmed into my cell phone under "ICE". My advice if you enter a hospital for a non-related surgery or procedure -- tell EVERYBODY you come in contact with, including the admiting clerk, the nurses, the operating doctor, the gas man, etc. Make sure it's on your chart. And have your wife or friend around to remind (nag) people about it.

Itzagift
Posts: 6
Joined: Jun 2012

I've been "lurking" on this thread (and many other sites concerning AUS's, cancers and heart issues) for some time as I was in the process of going thru the urodynamic tests to get an AMS800. When I began this, my third attempt in 12 years at getting the incontinence thing under control, I told a bunch of people that a tattoo was the only sure way to make a notification of catheter danger obvious to medical folks. I've been in the ER MANY times and no one has ever asked that question and I fully expect none ever will in the future.

My AUS was installed May 30 and gets turned on July 10. (I'm still sitting on a thick pillow even as I type this.) As soon as I know it works OK, it's my plan to get that permanent caution sign installed in addition to the medic alert bracelet and wallet card. Hospitals are dangerous places...you can get seriously killed there, not to mention all the pipes and plumbing they poke and prod you with.

JH
Posts: 1
Joined: Sep 2012

Where did you get your medical ID and what language did you have engraved on it. I agree it's important to have it for the reasons you stated.

YTW's picture
YTW
Posts: 67
Joined: Apr 2010

Most drug stores sell them They are very inexpensive. You dont have them engraved. They open up and you put a written message in them

Jimmy/Cleveland

Trew
Posts: 892
Joined: Jan 2010

 I have run into this too.  Talking with a friend who is a family doc he had no idea what an AUS was.  I like the tatoo idea.  I might have that done.  worth thinking about.

What would the tattoo say?

 

Itzagift
Posts: 6
Joined: Jun 2012

I'm waiting until I have several months of success with the AUS before getting a permanent warning to medical personell. After 6 months from initial install I had to have a revision to my AUS on Dec 5 and it's still not activated so I'll just continue to wear the bracelet until the new pump is working right.

My bracelet has five lines on the front and four on the back. It also includes an Interactive Health Record on a website that can tell medical folks all they need to know about my history, medications, people to call, etc. I got my Stainless Steel Classic Bracelet from American Medical ID for $39.95.

First line on the front: STOP   STOP   STOP

Second line on the front: AMS 800 INSTALLED

Third line on the front: DO NOT CATH

Fourth line on the front: UNTIL AUS

Fifth line on the front: IS DEACTIVATED

 

First line on the back: my name and birth date

Second line on the back: FOR MEDICAL INFORMATION

Third line on the back: MYIHR.COM OR 800-490-2400

Fourth line on the back: USER: my name     PIN: assigned when you buy the bracelet

 

As others have posted: almost no one knows what an AUS is and will never check for one in and emergency. If you have one, you definately need a warning method to keep your plumbing intact. I have a virtual army of MD's keeping me going after multiple cancers and heart issues and I've asked them all about their knowledge of this and none have ever had another patient with one and most didn't even know what it is.

 

 

Rembrant
Posts: 1
Joined: Jan 2012

Hello harvs,
I see your last post was in March of 2010 and I'm hoping you are still happy with your AMS800. I'm considering having the surgery and wanted to communicate with someone who had the surgery.
I had prostate cancer and surgery three years ago, and my incontinence never improved. I go through 8-10 soaked pads a day and I tried all of the following: Physical therapy, cytoscopy, biofeedback, Kegels, exercise = no improvement and no obstructions.

I'm concerned I might not be able to ride my motorcycle or bicycle after this surgery but
so frustrated with the incontinence I am willing to go for it. I would love to be able to communicate with you or anyone else you might know of or other online support groups for AUS. I know there must be others who have had this surgery but can't find them in online support groups. You are the first person I have come across. Would so appreciate hearing from you.

Thanks for any help you can provide.
Rembrant

PeteHigg
Posts: 1
Joined: Feb 2012

Hello Rembrant,
I have been examined by 3 urologists & all agree that my only option to gain continence after PC surgery (1 1/2 yrs ago) is the AUS. I've visited Cleveland Clinic & am on their list for future surgery, if I elect to do so. I've asked locally but cannot locate any men who've had (or will discuss) this implant surgery. The only info I've located is this web blog but would like more current discussion. Have you had any luck in finding information? Have you had the surgery? I would appreciate a reply or you may contact me at redhouse77@aol.com. Any discussion would be greatly appreciated.
PeteHigg

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I had an AMS 800 implanted in 2007. I've been riding my motorcycle ever since. What do you need to know?

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I had an AMS 800 implanted in 2007. I've been riding my motorcycle ever since. What do you need to know?

bbnovell@cox.net
Posts: 1
Joined: Jun 2012

Hello my name is Bill and i had the AMS800 put in 11 yrs ago. what a wonderful thing.
I to was a bike rider about 150 miles a week . The ams800 stopped that but it was worth it.
The reason i noticed your post i was looking for info on the ams800 because mine stopped working about two mo ago and will see my dr next week. Wanted to update myself on what may be wrong. For the ams800 i have been very happy with it and up to now no problems at all.
Looks like part or all of it may need to be replaced.
Any questions contact me at bbnovell@cox.net
Bill
Age 75

ricardo1945
Posts: 2
Joined: Nov 2014

Have incontinence going on 3 years after my prostate surgery it has never improved. I want my life back and deciding if I should go with ams. Please advise anyone who has had ams

tpelle
Posts: 161
Joined: Aug 2003

I suffered through ten years of drippage following radical prostatectomy and then had the AMS800 installed.  It wasn't an easy surgery but the results were great.  However, recently it stopped working  --  lost it's hydraulic fluid.  I'm going tomorrow for a systoscopy and ultra sound; then to see the surgeon.  I'm anxious to have it repaired.  I'm also anxious to get back to a working AMS800.  So, if your urologist is recommending the artificial sphincter, I'd recommend it in spite of my setback.  tpelle

ricardo1945
Posts: 2
Joined: Nov 2014

No improvement with leaking after my implant was put in.  Urologist says i may have to have a 2nd cuff put in.  Anyone with like this please give some advice.

Josephg
Posts: 37
Joined: Jan 2013

This is the first that I've heard regarding a complete failure of the device's primary function (ability to stop urine flow following surgery, versus some mechanical or hydraulic failure).  Cuff selection (size) and cuff positioning on the urethra are critical tasks for a successful outcome.  If it were me, I'd schedule a review with another surgeon in another institution, preferably one who has performed many, many of these implants.  Worst case, he/she tells you the same thing.

tpelle
Posts: 161
Joined: Aug 2003

Ricardo:  I am sorry to hear that your recently implanted AMS800 is not working.  It sounds like when your surgeon activated the system in his/her office either hydraulic fluid did not flow to the cuff to close the urethra or the cuff was much too large to have slowed the leakage flow.  Even if the cuff were too large, you should have noticed some reduction in flow of urine when empyting your bladder.  After activation when you stroked the pump you should have felt the movement of hydraulic fluid from the cuff.  My understanding is that a second cuff is required when the first cuff doesn't totally close off the flow of urine, and there remains some leakage.

My first AMS800 installed in February 2013 worked beautifully for about 17 months.  Suddenly, it stopped working.  When I stroked the pump, I could feel there was no fluid in the pump to push out to the reservoir/balloon.  The surgeon confirmed that the system had lost its hydraulic capability.  I opted to have the failed AMS800 removed; and a new one was implanted on January 14.  The surgeon expects to activate the new system next Monday (February 23).  It feels like she has used a smaller cuff as the flow of urine is less than before.  The old system failed as a result of a pin-sized leak in the reservoir/bladder. 

Good luck.  tpelle

shiredvd
Posts: 1
Joined: Jan 2015

I am scheduled for surgery 1-21-15 and during pre-op instruction was told I would long tern have to mimimise bike riding, no horseback riding or rappelling. I was also told that I will have to alter the way I sit as well as length of sitting. I was told that anything that puts pressure on the space between the scrotum and the anus would reduce successful use of the AUS 800. What were you told before surgery? For 16 months I have used a condom cath and leg bag with leakage about once per month with no restrictions regarding activity so I wonder if quality of life is enough better to undergo surgery.  Thank you to anyone who may be able to give insight as I am confused.

Josephg
Posts: 37
Joined: Jan 2013

First, you have to decide if your current quality of life, including the process(s) that you currently use to manage your incontinence, is acceptable to you. What 'can't' you do now, due to your incontinence, and how important are those 'can't do now' activities to you in your overall quality of life requirements?  How much of a PIA is your current process for managing your incontinence?

Nobody on this Forum can make that assessment for you, and I'm sure that I'm not saying anything that you do not already know.  I'm not trying to be a smart-ass here, but this is an important decision, one that requires as much assessment, unbiased thought and introspective as any other decision that you make regarding your PCa and any related treatment and/or post-treatment options.  That being said, the folks on this Forum can provide you with lots of unfiltered personal experiences and recommendations, based upon those experiences.

For me, my quality of life was not acceptable, due to my incontinence, after my RP surgery.  I went through 4+ pads per day, and I could not go out of my house and be semi-active (walking) for more than 2+ hours at a time, without my pad filling and overflowing through my underwear and pants (and onto whatever I might come into contact with, like a chair, or someone else's chair).  Forget about being active, like jogging or playing any kind of sporting activities, as I would not risk that associated level of personal discomfort and embarrassment.

I had the AMS implant surgery, and for me, it restored me to a completely acceptable quality of life.  The AMS implant does not restore me to 100% continence, but my surgeon told me prior to the implant surgery that his procedure would not achieve that, by his choice.  He advised me that to put that much cuff pressure on my urethra for 100% continence would result in premature urethra wall thinning, thus setting up the probability of future surgery to adjust the position on the cuff on the urethra.  As a result, I am socially continent, which is 85+% continence, and for me, I have not yet found an activity that I could do prior to my PCa that I cannot do now with my AMS implant in place.

I threw away my BVD's, and I wear Depends (could just as easily wear a pad), just so that any residual or movement/sitting-related leakage, no matter how small, is appropriately contained.  My job has me sitting most of the day, and the AMS implant does not hinder me in any way from being able to sit for hours at a time.  Yes, I can find a position or two, whereby I can feel some minute leakage taking place, due to exterior pressure from the chair being placed on the cuff, but that in no way limits my sitting or any other physical activities (gym 3 times per week, camping, hiking, boating, football, frisbee, etc).

I outlined my experiences for this device on these pages:

http://csn.cancer.org/node/188931?page=3 - 5 postings

http://csn.cancer.org/node/188931?page=5 - 1 posting related to the implant

It appears that you've already seen the postings made by Trew, who was my mentor and responsible for convincing me that the implant was a logical and appropriate next step to regain my quality of life.

For me, the AMS implant was absolutely and unquestionably a gamechanger in restoring my quality of life, resulting from my severe incontinence after RP surgery.

I've had my AMS implant for 2 years this month, and I do not have a single regret over choosing the implant procedure.

Good luck to you on your decision process.

rhpruett
Posts: 2
Joined: Feb 2015

I just had the AMS800 installed January 6 and it was activated two days ago.  Had quite a scare tonight when I pressed the pump, flattened it as it should be done, and urinated only a trickle.  I knew my bladder was full, but it wasn't coming, so I pressed the pump again, and urine rushed out that time.  This has happened three times today. Have you had this problem since yours was installed?  Thanks for your help.

Itzagift
Posts: 6
Joined: Jun 2012

Shiredvd,

 

By now you probably have the AUS installed and will soon know the answers to many of the issues you posed. In as much as my AUS has been working well for several years I can positively state that (baring unforeseen circumstances) you will be very happy to have the device.

 

On this, and other sites, the same questions keep coming up over and over. A natural concern for anyone contemplating this procedure. However, each of us is unique and results can vary. Here’s my evaluation at this point in time:

 

As others have stated. I don’t have complete continence. I give it about 85 to 90 percent. I use the thin Depends Shields and can get a good 24 hours on just one. Even so, I often change it just for odor control. As do others, slight movements while sitting or standing can cause minor leaks. I am extremely active (for my age of 72) and ride my new Colnago CLX3 three or four days a week with 125 to 150 total miles…many hours on the saddle. On my old Trek and my new Colnago I use a Selle SMP TRK saddle that has a very large center split and a down turned nose. My point…the cuff is not a problem with the correct choice in saddles. I’ve stepped down from jogging 6 to 8 miles on the days I don’t ride because of leg problems (lymphedema and knee issues from the RRP) so now it’s just a power walk. That keeps me out for several hours at a time…minor leakage not requiring a pad change.

 

I had a revision because the original pump kept rotating back under the cuff and I could not access both ends to hold and activate it. My Urology Babe replaced the pump and tied it permanently into a horizontal position toward the front. It still pulls back in a little on occasion but has not presented a major problem in activation.

 

My original intent to get a tattoo has gone by the wayside. I’ve now had so many medical procedures, my tolerance for more (elective) discomfort is nonexistent. Chemo, surgery and radiation for non-Hodgkin’s, ablation for AFIB, lithotripter for kidney stones, hernia repair, and more have taken much of the entertainment value out of watching what my army of MD’s can do to keep me glued together. But, while many of these procedures have undoubtedly saved my life, I have told them all that the AUS is the thing that LETS ME LIVE.

 

I’d do it again in a heartbeat, and will do it again when this one wears out.

Trew
Posts: 892
Joined: Jan 2010

Interesting Youtube video on the sphincter:

http://www.youtube.com/watch?v=cWAit7hRYew&feature=related

I am thinking that a clinic that specializes in installing these things would be better than a local urologist? If I do need one of these things in the future, I sure want it done right.

So it would be interesting to know of places that specialize in doing this type of surgery.

harvs
Posts: 54
Joined: Jun 2003

Very good video.
I agree if you can find a place that specializes in this - much better than the local Uro

Trew
Posts: 892
Joined: Jan 2010

I think this topic has put a bit of fear into my system (finally!) and the last 24 hrs have been the driest for me since I ended rad on jan 15.

I have been kegeling myself to where I can't find my kegel muscles - especially while walking and slow jogging which is not exactly easy to do. I will be dry one way or another. I can not live with leakage.

harvs
Posts: 54
Joined: Jun 2003

I was going through 6-8 pads a day plus wearing protective underwear for the overflow. I kegeled myself to death, tried Tegress bulking injections, and clamps. Nothing worked.
This was a last resort and worked wonders.

ob66
Posts: 220
Joined: Apr 2010

Picked up on your nice answers. I had daVinci prostatectomy 6/5/2010. Had a slightly elevated PSA last visit (0.05 to 0.07). Need radiation therapy. Am on three to four pads a day currently. Told it will not get better and could get worse with radiation. Doing the AUS sphincter surgery 5/10/2010. Any comments Harv? Worried about activation. Seems like a lot of warnings with regards to surgery---failure of appliance, infection, etc. Any comments? All help would be appreciated.

Trew
Posts: 892
Joined: Jan 2010

Ob66, I hope it all goes well for you. keep us updates on appointments and outcome. I am getting better. I was so close to dry when I started radiation. I had a lot of swelling after radiation and the urologist PA back here in MI put me on a 6 day medrol RX which really opened up the flood gates for about 6 weeks. That is now slowing down to maybe 2- 3 pads a day, but still not good enough to be an active backpacker again- and I still have a lot of stress incontinence. If I just sat in a chair all day I woul be ok- but I can't do that- I want to be out on a the trail for a few more years. I have dream to one day hike the CDT end to end. Can't do that with wet underwear and sleeping bag.

And I know someone who is much worse off than I am but I think he is just going to live with it.

ob66
Posts: 220
Joined: Apr 2010

Thanks for your helpful reply Trew. Was wondering if there was anyone reading who went into radiation therapy with mild/moderate incontinence (3 pads a day), and either got better than that or stayed the same some time after radiation was completed? My incontinence has improved with physical therapy, caffeine and alcohol elimination, but is still not cured. Any input would be appreciated as I am probably going to have sphincter surgery unless I had high hopes without it. Thanks.

Trew
Posts: 892
Joined: Jan 2010

Did physical therapy help you any? Any leakage is totally unacceptable with me. I am changing doctors this month and I will discuss with the new doc realistic expectations RE the future. I would love to put this entire cancer thingie behind me, but everytime I see the pad I am reminded that in a way I am still crippled.

ob, I am very much interested in how it goes with you. I am going to add you to my firends list and I hope we can keep in touch this coming year.

ob66
Posts: 220
Joined: Apr 2010

The physical therapy helped immensely, but after ten months I am not all the way there, and need radaition therapy (thus the sphincter surgery). My urologist has an excellent PT who specializes in such things. Once a week visits since last November. Went from 10-12 pads to 5 or so 1 month ago. Now some of that was probably time, but a lot was due to the exercises IMHO. Now with quitting caffeine and alcohol, I am down to 3 pads a day. Found a way to have about 2 ounces of wine with dinner and I am OK.Lots of breathing exercises (yoga), stretches of quads, hams, etc., kegels done in many different PT ways using elastics, the ball, etc. The idea is to work the abdominal cavity to assist you in gaining control. I have nothing but the highest regard for my PT, and would recommended her and what I went though to anyone, even though not a complete reversal of my incontinence. Hope this helps.

Trew
Posts: 892
Joined: Jan 2010

I see my new doc on April 29 and I will certainly be discussing this with him. but even one day a day is too much for me. I must hike again. Any PT exercises you can post/descibe will ber appreciated.

JR1949
Posts: 230
Joined: Jun 2009

OB66, I had radical prostatectomy March 2,2009 and now almost 14 months later, I am using 3-4 pads a day with diaper, no change of pad overnight tho getting up average of 1-3 times and still have leakage. I drink only caffeine free coffee and cola and no wine or alcohol. I have not done kegels as often as I should. Looks like you have had success with physical therapy. I see my urologist for 6 month followup and plan to ask what are my options and physical therapy was one thing I plan to ask about.
Thanks for sharing your experience with physical therapy. I'll let you know what my orologist says. If he does not offer any options other than scotum implant, then I will seek a second opinion.

lion1
Posts: 240
Joined: May 2007

JR,
I have found and stated it before, it doesn't matter what I drink, I leak profusely. I once quit coffee for a week--no change. Water goes through me like nothing---I have to get this contracting bladder under control----my Doc is trying these Botox Injections. The first one I had did nothing, but I only got 100 units. Typically they give 200 units. But, I like my Doc's approach. 3-4 pads a day---4 years this June----Man what a ride!!

Lion1

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