Hello. I am Jim, 65 years old. I have prostate cancer, Gleason scale # 7 . I will be undergoing surgery, radical prostatectomy, at the end of April. I would appreciate any advice or information from those who have had this surgery.
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Hello Jim. I will have the same operation on Monday. Gleason of 8 with a CT Scan that said it migrated to the near lymth nodes. Will let you know how it goes later next week. Till then, please know that a lot of other men are pulling for you. People that have cancer a lot worse that us have pulled through. Be strong!
Thank you Dr. Who and best of luck with your surgery and the recovery.
Hi Jim, My Gleason score was the same and I had Proton Therapy an still have my prostate and no cancer for 5 years now. I would say look at other alternatives an keep your prostate an none of the side effects of losing it. I'm sure you know all about them from your doctor. I had no side effects and happy with my choice to have Proton Therapy at M D Anderson in Houston, Texas. Take care an I wish you luck.
Michigan Jim
Hiya i had mine out 2 weeks ago, unfortunately Proton therapy is not available in the UK yet well not on NHS anyway. 2 weeks later im doing fine I did develope Hemroids from been constipated which are getting better the only problem i have now since having the catheter removed 3 days ago i can't stop leaking, i am fine while sitting its just everytime i moved around i have continued with the pelvic floor exercises but so far nothing has improved, I must be one of the unlucky ones that can take upto 12months to clear up which is a problem for me as in my Job I am on my feet all day and serving the general public.
Good luck with your OP m8 oh there was a couple of other guys had their catheter out the same day and they had no problems and they was older than me too I am 54.
Try a clamp you have to got into the restroom more often, but your pad stays dry longer.
Hi mate sorry im not sure what you mean by a clamp, is this something the Dr will need to do or something i can get hold of so sorry i really don't have a clue.
Thanks
I had prostrate surgery in October and after they removed catheter, I didn't leak, I gushed. I kept doing my exercises three time a day. In January one night I was actually able to make it to the bathroom with no leaks. About 2 weeks later I was down from 5 depends to one in a 24 hour period with little to no leakage. I still leak sometimes but it is so much better to be able to use the toilet. In short, hang in there, do the exercises, and you may get it back like I did. I could just use a pad, but the Veterans Admin gave me about 300 depends so I might as well use them.
Van
Thank you Van, though this is not very encouraging.
Chubby42,
Sorry you are having the leakage problem. I found the clamp to be good for only a short time especially if the flow is heavy. The best answer I have found is the Rochester Spirit #3 Wide Band or the Men's Liberty. It takes a day or two to get used to using either. You have to have a prescription to get your insurance to pay for them and they are covered under Medicare. That prescription is important because they are expensive. You can order a few on line to try out and I've found if I call the company they will not only give me a sample or two but will also give great advise in using them.
You can find the Rochester by searching under condom catheters and for the Liberty under Men's Liberty External Catheter. Liberty is a more advanced form of external catheters but instructions must be closely followed. The support people from the company are a Godsend. They run a blog and regularly post videos and you can call and get help. Thanks to having to have scar tissue from 45 days of radiation removed, I am totally incontinent. Doctors gave me no support other than being willing to give me prescriptions for what I requested (which is a big help--but I got my education on-line). But, I couldn't stand being wet all the time and having "accidents". I think I've tried everything available (I wasn't eligible for spincter replacement) and have found only the two external catheters have helped me have a fairly active life.
Best wishes to you. Don't give up. You can have a quality life-style--we just have to work harder to achieve. I've found this Chat Room to be the best for support.
Tbird1400
Thanks for the replies guys ill try and find these things on line and of course continue with the excercises, Tbird is that Australia or America your in, I had my Op done under NHS so i don't have insurance but will search for your suggestions and get prices, many thanks again.
Gary
Sorry, Chubby, didn't realize you are in Australia. I am in US and have just started following in this Blog. Somehow, I must be labeled as Spanish speaking in my profile because all the instructions I get are in Spanish and I have to guess what they are telling me.
The two things I mentioned you might find online under "external catheters for men" or condom catheters. The Rochester one I was told was developed for use by men running marathons, etc. That seems to be available from all medical suppliers of urological stuff. It comes in a variety of sizes and requires the usage of skin prep (very important to help it to adhere to body and also protect your skin), tubing, leg and night bags. Also remover to get all adhesive off. If you have not been circumsized, be sure to get Wide Band. Try to contact a supplier and they'll send you an intro packet with video, measuring stencil, etc. Here I ordered (self pay) a few of different sizes from Express Medical Supply, (exmed.net) to try. No prescription needed and sell in small amounts. NOT PROMOTING ANY COMPANY. Also have been able to get some through Amazon. Just want to be helpful as I wish someone would be with me. Liberty I found the company manufacturing it to be most helpful and it is easiest to use. You must be absolutely dry for it to work is the worse problem I have with it but I think it has the most potential. That penile clamp is a must for me just to keep dry while putting Liberty on. It is produced by a company called BioDerm email: customercare@bioderminc.com I also contacted them directly by searching "Men's Liberty External Catheter" They have a regular video program you can sign up for and very helpful staff. New company I think and isn't carried by all Urological Supply Companies. They package everything you need in one bag (skin prep and remover, entire catheter and small bag that you wear in your underwear; no plastic diaper. The only additional thing you need then are leg and night bags. I use only the attached small bag and empty more frequently. Suppliers have huge markup here. Hope that answers your question. I've done a lot of research on these things because determined to have active life.
This is from the newsgroup "alt.support.cancer.prostate". It is a few years old, but still of much value. As it states, this list is not from a doctor, so....
begin quote:
I compiled this shopping list of paraphernalia that would be good to have
on hand when you get back from surgery. I started the list in September 2001 before my own operation based on responses I got to a request here for suggestions.
Thanks to all those who helped put this list together way back then.
Since then I have re-posted periodically it to make it available to the newly diagnosed. Occasionally, additional items are suggested and I try to remember to add them next time I post this message.
One thing I would like to make clear up front - the list is exhaustive because I have included almost everything everyone has ever suggested. This does NOT mean you should run out and buy everything on this list. Some of these items are in the "luxury - nice to have" category and others are specific remedies some individuals found they needed for complaints that may have been specific to them.
Read through the list and at least think about what is here and what its purpose is. Get creative in thinking how you might adapt something you already have around the house to function in the place of some of these items.
Certain activities, not strictly hardware items, were recommended
frequently. I've included those activities as well.
I am not a doctor and this is NOT medical advice!
Hardware:
- A pair of oversized basketball type warm-up pants with snaps or zipper up the leg (to allow discreet access to the catheter and bag). Get a pair that is large enough to accommodate the large (night) bags and smaller (walking) bags - that will be provided by the hospital. A dark colour will be less likely to show wetness from any accidental leakage compared with a light colour. Fast drying material ("parachute material") is recommended if possible. This is not essential. [think basketball warm-up pants, snaps on the side]
- I have found convertible hiking pants (pants whose lower leg can be
zippered off to create a pair of shorts) to work wonderfully well while wearing a catheter. This type of pant also has a side zipper on the lower leg, which makes leg bag access a breeze. You can open the upper zipper (the one that runs around the leg) part-way to switch bags and let out the hose to the large drain bag.
- A five-gallon plastic bucket is very useful at night as a receptacle for
the large night bag. The bucket may become your constant companion around the house. Get a square one if you don't already have something else. [plastic waste basket works too]
- "Invalid" cushion (looks like an inner tube)
- Antibiotic ointment/lubricant (Polysporin, for example) for where catheter exits (some had this supplied by their hospital). Some recommend a water-based lubricant such as KY Jelly but that tends to dry out quickly. Get gauze 4X4 pads to apply ointment.
There has been some debate about the best fluid to use. You want something slick, long lasting and certain not to damage the tube. It would be nice if it were also antibacterial. I used Polysporin and Erythromycin with no problem. Polyfax ointment is a name to look for if you live outside North America.
- Alcohol swabs to clean the catheter at the tip of the penis (single use
wipes designed for cleaning the skin before an injection).
- A pair of slippers or sandals or loafers.
- Over-the-counter stool softener
- Get a haircut and trim your toenails before surgery
- Several people recommended buying, borrowing or otherwise acquiring the
use of a reclining chair.
- Place a chair by the bed with the back facing the bed. Use the chair as a
bedrail to help you get up. Use the seat as a bedside table to hold some of the things you want to keep handy. I would STRONGLY suggest you test this out BEFORE you go to hospital to be certain it can take your weight as a handrail before you rely on it post-surgery!
- A pillow to hug early on to ease pain in laughing etc.
- A pillow to put between your knees while sleeping on your side.
- Grab bars in the area of the commode (don't use towel racks for grab
bars!)
- Use a plastic coat hanger stuck between the mattress and box spring to
hang the bag from or just place it in the bucket on the floor.
- Nice baggy, soft sweat pants or warm-ups - oversize with drawstring if the
weather is warm inside the house or out of doors
- A soft bathrobe belt to make a shoulder strap to suspended the big bag if
you prefer it to the "walking" bag.
-. Silk/nylon/rayon boxer shorts for the period you have the catheter
- Some readers have recommended "boxer briefs" for the combination of
support and their ability to hold the catheter and prevent tugging [medical tape on the inner thigh is helpful too]
- A plastic sheet to go under the bed sheets and protect the mattress once
the catheter comes out. A large plastic garbage bag might work in a pinch.
- Have enough easy to prepare food on hand for 2-3 weeks
- Book(s) you've been intending to read
- Fresh batteries for your TV remote
- A cordless phone and up-to-date phone list
- Some big baggy mesh shorts (in summer)
- Suspenders may be helpful, in place of a belt
- Two dozen inexpensive white washcloths (in a big bundle)
- Some of the little plastic, stick-on hooks to put in the shower etc., for
a place to hang the bag or simply the pail, placed outside the tub.
- To help stave off possible urinary tract infection, either Ural (seems to
be an Australia/New Zealand over-the-counter drug) or a supply of cranberry juice. They work in different ways to achieve the same thing.
- A watch or interval timer to remind you not to stay sitting too long. The
small kitchen timers would work for this and to prompt you to get up periodically at night if you need to do so. [timer on your smart phone works too]
. An electronic thermometer (about $10) for keeping track of your
temperature for a couple weeks postoperatively.
- A walking stick may prove to be helpful.
- A safety bench (maybe a plastic lawn chair?) for the shower (sometimes
you're a little light-headed when you first come home and it's nice to have something to sit on)
- A raised seat to put over the toilet (as an alternative, or in addition
to, grab bars)
- A grabber for picking things up if you drop them so you wouldn't have to
bend down.
- If you have the hardware, fill up a MP3 player with your favourite tunes &
use headphones to help "drown-out" the hospital noise.
- A "toilet seat lifter". I would be inclined to bend a coat hanger into a
hook that I could work under the lip and lift, but there are probably commercial step-on type mechanical devices akin to garbage can lid lifters out there. Just use a stick or bend at the knees, keeping the back straight. Heck, just leave the lid up for a few days.
- One person indicated his hospital made him wear a pair of anti-embolism
stockings the whole time he was there. He bought another pair when he went home and suggests considering doing the same.
- Drinking straws - you will want some for the first week.
- Plastic cups - they're lighter than glass
- Extra pillows - for sitting up in bed and as arm rests at night and for
the couch.
- Velcro Foley straps - the walking bag can slip down your leg and pull on
the tube.
- A current phone list - one of contact people who must know, one of friends
to come visit you, walk, and meals, shop for you. Spread the burden.
- A few woman's (not a few women's- get them from one woman) menstrual
pads - don't be shy, the big ones, they're smaller, cheaper than incontinence pads and can be added to the diaper and changed more often.
-Travel bag - like a baby changing bag for when you go out or the keep
women's pads in your pocket.
- Viva paper towels - to help when wet - they're soft.
- Toilet wipes - the first few times they're nice, along with baby wipes for
everything.
- To deal with the rash and itch consider getting tubes of Desitin and/or
Butt Paste, both containing zinc oxide.
- Diet plan - coffee is bad for bladder, eat more fruit, less meat, no
cheese & bananas while on stool softeners. Diet and supplements are part of permanent recovery plan.
- Look into a cancer society group such as "Man to Man" that meets monthly
and go to a meeting before surgery.
Repeated Advice:
- Learn to roll sideways out of bed (rather than sit on the edge trying to
stand upright). Practice before going to the hospital.
- Walking is the best way to get your body ready and to recover.
- Wait to see how bad your incontinence is BEFORE purchasing a lot of pads
etc. but do buy a package of men's guards to bring to the appointment when the catheter is removed. Have a look around at what is available and compare costs before hand.
- Tena Serenity Pads for Men: the triangular pads are wide
enough to prevent side leaks.
- *Flip-top* plastic pail. A $3 Sterilite 20-quart oval bucket from
Walmart, lined with scented plastic kitchen garbage bag, prevents diaper/pad odour escape for weeks if you chose to wait that long before emptying it.
- Kegel, pre-operation and post-catheter removal (not with catheter in)
- Remember, what you are going through is TEMPORARY, in a few weeks you won't even remember the discomfort of some of this stuff!
end quote
As stated, this list is fairly exhaustive, key takeaways for me were, oversize zipper or snap warm-up pants, the bucket, women's pads, antibiotic lube for the catheter, and chair by the side of the bed. Lot's of this is common sense. Oh, and kegels, kegels, kegels BEFORE surgery.
Good luck, prayers for a successful surgery and a full rapid recovery.
Scared ... I know.
I am now 72 years old and had the surgery six years ago. No recurrence since.
You will need someone to help you for the first week to 10 days after surgery.
Good luck.
Jim
Thanks for your advice and good wishes. May I ask what kind of help I will need for those first 10 days to two weeks? I live with my brother and his girlfriend but they work. I will be alone during the day. I must take care of myself, get out of bed, walk around, go up and down stairs, shower, use the bathroom etc. The doctor's office is telling me that this will be no problem. But you're not the first one to tell me that I will need help.
I remember the fear before surgery and my over riding concern about being able to get an erection. Kegels are the most important thing to do before surgery. You will need to re-train your body to automatically stop peeing. The kegel exercises strengthen this ability.
I was a gleason 8 and had the DaVinci method for my prostatectomy. First question after surgery was: Doc did you save the nerve bundle. At that point my priorities were still skewed based on my pre pc life.
Post op was another source of fear but my experience proved to be pretty straight forward. I told the nurses that I would be back to normal in 2 weeks. They just kind of snickered. Looking back I can see that facing the unknown is scary. Following directions and keeping you spirits up are essential. I watched lots of movies and read books but even after all that fun at times I still felt sorry for myself.
Learning to appreciate and having gratitude in my life continue to be my best ways to keep my self pity at bay. Jim you'll be fine. I know when I heard that it provided little security. I've learned to embrace the new and unknown. I am present to each day and each experience. Jim did I mention you'll be fine. No matter what happens you'll be fine.
I'm so glad you reached out here. We love you brother. We also know the path you are just beginning and we are here for you.
Thank you for your advice and support. May I ask if you did ever regain erections?
nope however I didn't investigate shots, pumps or other means either.
I am five years out from my DaVinci robotic. Walk and exercise. Kegel exercises. Lidocaine for tip of penis when you have the catheter. After you clean apply Lidocaine. Trust me. You will thank the gods for this relief. Peace and prayers.
Hi...my only recommendation is: get a second opinion at your nearest Comprehensive Cancer Center (CCC). You can google them, if you are in the USA
HI.
I had a prostatectomy at 65, am 68 now. Because the cancer had escaped the margin of the gland and attached to the bowel the doctor was not able to spare the nerves. On top of that, my PSA began slowly rising almost immediately so I then had 37 radiation treatments. Still have small amount of PSA which is again rising slowly so something (meds) will have to be initiated at some point. Luckily I am not incontinent but I cannot achieve an erection, although at times I'd swear I have one. (Phantom limb sensation?) I tried the pump but found it very inconvenient. Tried the shots with no luck somewhat because in part I have needle phobia especially when it came to my penis. I have renamed my cherished friend. I used to call him Moby, the Great White. Now I call him Nemo. What else can you do but try to make the best of it? And speaking of that, my loving wife and I have found a way to have very satisfying orgasms. Life isn't over just because Nemo now watches me tie my shoes in the morning instead of standing up to watch me shave :).
By reading all these responses you have no doubt become aware that there is no one right way to attack your cancer. That's the current state of affairs. Explore the options and study. I feel like I'm an expert now and you should become one, too. Then go with the doctor you trust most. You have no reason to expect less than a full life. Just be aware that there will be some changes.
God bless!
Thank you and good luck.
Hi Jim. I had the same Gleason score at age 46....8 years ago. Had robotic surgery and 2 years ago my Dr told me that I can now say that I have a history of cancer! I won't deny, everything you read has some truth to it....every patient is different. Mentally, it was tough.....again I was only 46.....for me there wasn't much a choice as the cancer was pretty aggressive. Make sure you have a skilled surgeon who has done this operation many times. It took me some time to find a Dr that would operate as they felt it was risky. I truly trusted a path that pointed to a certain doctor and I went for it. I have had very little side effects. The "money shot" is gone....but I am alive and healthy. One good thing, you will see life through a different set of eyes....best of luck. If you have any questions, don't hesitate to ask....I will be brutally honest..take care, Rob
Thanks for your reply and your honesty.
First, I wish you the best of luck. You have been given a lot of good advice. However, each man's post surgery experience is different. I had a robitic assisted radical prostatectomy in 2014 at age 68. My Gleason was 7 (4+ 3). I needed almost none of the equipment that some have recommended. I had mild incontinence and mainly used the light pads, with a few heavy duty ones for the first couple of weeks. Never had to use the full underwear. It did take me about 6 months to regain full continence. I did buy boxer briefs which helped to keep the catheter in place. You may want to use a "buy as you go" approach before investing in a lot of equipment, especially if those you live with are willing to help with this. My recovery was basically very easy. I attended a 5 hour wedding the day after my catheter came out. I only point this out to let you know, that for some of us, the actual process and recovery from surgery itself can be relatively easy and non-traumatic.
The main advice I can offer is to be clear with the surgeon about what he will be doing relative to lymph nodes, surgical margins and the length of time the catheter will be. You probably have discussed incontinence and ED. My experience and that of others is that often surgeons underestimate these major side effects. You also might want to discuss any genetic testing that might be done on your surgery pathology sample to provide information about estimates of agressiveness of your cancer and chances of recurrence. This information can help to make decisions about any further treatment soon after survey.
The overiding guiding principle is to never second guess your treatment decision. It made sense for you based on the information you had. "Shoulda, woulda, couda of" has no place on this journey. Wishing you all the best.
Thank you for your advice and encouragement. Based on what I've been reading your experience is probably better than average. I hope I do as well as you have and I wish for you continued recovery and good health.
in reply to jmhomanich
I was happy when I got my doc to write for conveen external catheters and leg bags. It works for me.
Later I found that a like product named "stadium pal" is available without a prescription.
good luck
Had the surgery in 2916. Would do robotic if they can, surgery went well no major pain was up a walking pretty quickly after surgery. There are side effects but they can be managed and vary with each person. In my case undetectable until recently looks like a bio chemical reaction, seeing oncologist in a few weeks just had a soma showing some uptick. Exercise as much as you can and do keels to help with potential incontinence. Hope all goes well with your surgery.
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