HealingWell
Search Close Search
☰

OCTOBER SURGERIES

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2 3 4 56 7
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/26/2010 11:29 PM (GMT 0)
Yay,
Things are moving at four days. Quite the relief. The cath bag is looking more like rose than merlot. Just have to remind myself that I can't get on my knees and fix the cabinet door or pick up the little dog. Hey Ger, I'll join you and walk laps around the pool. Darnet where is that skimmer pole? :)
Posted 10/27/2010 4:34 AM (GMT 0)
Highwayman,

Great news. Try that cabinet door once, you won't make that error twice!!

Posted 10/27/2010 6:40 PM (GMT 0)
142 wrote: "Getting any ED meds paid for by insurance is a big challenge. I've had Uro and GP write letters of medical need, and they have been refused outright and on appeal.

Call the insurance company with the policy numbers and find out what they will pay for."

Apparently Highmark Blue Cross/Blue Shield will not pay for any drug designed to "treat impotency" - see Page 64, line 35 of the contract. Doesn't matter that the reason this is needed is due to RP cancer surgery which is a covered benefit.

The nice lady in customer service, using low soothing tone of voice, assures me that "You are, of course, entitled to file an appeal." ....should I even try?
Posted 10/27/2010 9:29 PM (GMT 0)
Pipedream,

To do the appeal you will need new letters stating medical need from the doctors, responding specifically to whatever the ins. co has said was the reason for refusal, and they should know the ropes of associating the new ED condition to illness/surgery that was covered, and establishing that it is a significant and disrupting change in life.

Sort of like plastic surgery after a disfiguring accident -

Now, if there was any history of ED before, it greatly reduces the odds of success.

If ED meds are specifically excluded by the policy from coverage for any reason at all, it is probably pointless to try. You might check to see if there is a plan through a pharmacy chain that would give you an established discount.

I've appealed decisions, and gotten one reversed after medical review, but I've lost all the rest, including the Cialis. My GP said quit- my ins covered more pills per month (8) than any other (private insurance) he was aware of, saying that most that do cover them pay only 5.

Good luck!

 

Posted 10/28/2010 6:05 PM (GMT 0)
Now, if there was any history of ED before, it greatly reduces the odds of success.

No history of ED prior. And even if we had noticed the exception on the THREE pages of things NOT covered when we purchased the policy, little did we know prostate cancer was in our future. And how could we know how that little two word exception, no coverage for "impotency treatment" would impact us a few years later.

One would think that ED caused by prostate cancer surgery would not fall into the same category as age-related ED. I will file the appeal but I don't have much hope.

It is coming back to me now from 7 years ago when my husband (colon cancer surgery, chemo, radiation) and son (ameloblastoma - radical maxillectory) had major health issues....how it wasn't enough that we had to battle life-threatening diseases, we also had to continually battle our insurance company to pay for medically necessary treatment. When my son's tumor was removed, along with 1/3rd of his jaw and roof of his mouth and 5 teeth....the insurance company didn't want to pay for the anesthesia because it involved teeth and we didn't have dental coverage. Never mind that the tumor was a life-threatening medical condition that just happened to occur in his upper jaw. Color me cynical and battle weary.
Posted 10/28/2010 9:35 PM (GMT 0)
Pipedream,

We also have BCBS (of Florida) and they initially refused to pay for Geoff's Cialis, but his doctor sent them a letter stating it was for prostate cancer rehab-not ED.  BCBS then said they would cover it for 1 year and reconsider after that.  It's definately worth trying-just be sure that your doctor states that it's for pc rehab, not ED.  Good luck!

Renee

Posted 10/29/2010 12:17 AM (GMT 0)
Made the 10 hr trip home in pretty good shape. Tired but sure felt good to get back to our own bed. Was the first night since out of the hospital 8 nights ago I slept in a bed. All other nights had been in a recliner.

Next phase is just what the last few messages have been about - Viagra and insurance. Could not agree more about them denying everything and making you fight for every claim. I watch all bills like a hawk and call them on every one of them since they are either coded wrong or coded as "Out of Network". I believe they deny most claims (legit or not) and see if anyone will take them on by questioning each item. Our system of health care ins really sucks and I fear it will get only worse.

Keep up the vigilance on them and go after every charge they deny...several times.

Posted 10/29/2010 3:01 AM (GMT 0)
Glad you made that trip home and in pretty good shape, Inwm.  Good luck on the rest of the road to recovery.

Pipedream, we haven't had to deal with the insurance company problem yet, but I foresee it in our future.

Ger, glad you have a pool you can walk around and maybe the weather to cooperate!

Mike, stay away from cabinets, AND  lifting dogs and young children.  Ron hasn't attempted to do any yet.  But walking is good!

142, you're always providing good advice!

Hello, Renee - hope all is going good for Geoff!

Here's the latest on Ron's rehab... the therapist recommended Headache in the Pelvis 5th Edition  author, David Wise, PhD.  This book describes in layman's terms, the Stanford Protocol, a treatment for pelvic pain developed at Stanford University in the Department of Urology.   I cannot describe the things this therapist is doing to him.

 

Is anyone familiar with this book or the treatment?

 

Thanks,

Aimzee

Posted 11/5/2010 6:25 PM (GMT 0)
I had my follow up visit with my urologist today. He said all looked well. I asked about ED and he said to wait until 2 months after the surgery until we try anything.
Got a copy of the path report. Prostate size 56 gm. Gleason grade 3+4 = 7 up from 6. Extensive high grade Prostatic intraepithelial neoplasia (PIN). Margins uninvolved by invasive carcinoma. Tumor 5-10% of prostate, right lobe and 3 of 30 tissue blocks involved by tumor, largest tumor diameter 1.2 cm.
I leak a little but for the most part I'm dry. I'm using the thinnest mens pad and using 3-4 a day.
Posted 11/6/2010 3:10 AM (GMT 0)
Ger,

glad to here you are doing well. When I had my cath out Tuesday  my Doc was talking about "studies show some beneift" my wife asked if the pills work can we........ and our Doc said wait a couple of weeks. Sounds like it was all contained and you are way on the green side.

Best wishes,

Mike

Posted 11/6/2010 6:04 AM (GMT 0)
Prostate size 56 gm. Gleason grade 3+4 = 7 up from 6.

Ger, your Gleason went the same as Ron's.   Also, his doctor gave the same advice about ED.  I wish you and your wife the best in that department.

Well,  Mike you're on your way to recovery.  May it go smoothly!

Aimzee


Posted 11/6/2010 2:10 PM (GMT 0)
I slept 7 hours before I had to get up to urinate. I have not done that in years.
Posted 11/10/2010 2:20 PM (GMT 0)
1 month ago today I went under the robot. Seems so long ago. I only get up once a night to urinate, wear a thin pad to catch the occasional leak, walking both dogs together twice a day. Starting to do small things around the house making sure not to strain the abdomen muscles. I haven't driven since the operation. I think tomorrow or Friday I'll just take the car and head to the range. I've got a rifle I need to sight in and test some loads. I'd like to be able to shoot a 600 yd match in January.
Posted 11/10/2010 4:07 PM (GMT 0)
Good to hear of your recovery GER.

I'm going through one half a pad a day (I cut and tape the "open" side). This prevents some of that discomfort of my thighs rubbing the pads. Nov 1 was a month for me and things are going well, although I suffer the occasional setback.

I went two and a half days without a leak - until yesterday when I couldn't seem to control a "sneeze leak" or getting up form the sitting position. I cannot seem to stand still very long without the feeling that a have a 10 lb. weight strapped to my scrotum. Having to sit on a hard chair in a meeting yesterday, my face turned white (ashen, as my peers later told me) with pain. I figure this will one day be a memory.

I still do not walk my dogs (Labradors) for fear of damage. I am reluctant to use any pain killers because I want to "hear" my body's signals. However, I hiked 4 miles this past weekend over semi-flat terrain but I did have to rest about every 20 minutes.

If only I could sleep more soundly (without having to take Benedryl) and get up fewer times to urinate every night, it would be so much more conducive to recovery.
Posted 11/11/2010 4:46 AM (GMT 0)
Hope I can catch up with you gentlemen soon. I'm glad to hear there is good progress. I got the cath out a week ago and I'm going through six or seven pads a day. Although I get up only once at night I change the pad too.
Walking twice a day and laying up glass projects in the kiln. It keeps it warm out back in the shop. Otherwise I'd go stir crazy.
Best of luck,
Mike
Posted 11/11/2010 8:04 AM (GMT 0)
I am glad the October surgery guys are making progress!

Ger, good to hear you are walking the dogs and they aren't walking you.  Good luck with your driving adventure.  The thing is to do it when you feel you are ready.  Ron was stir crazy and made a short trip that first week.  But when taking the pain meds, it was a no-no.  Have fun at the rifle range!

Alegar, those set-backs can be discouraging but it will get better.  My husband is going to rehab to learn exercises for strengthening the pelvic floor.  He use to do stomach crunches every day, but nothing since the surgery.  I have wondered if that would weaken his pelvic floor muscles.  I hope you figure out a way to get more sleep!

Mike, it sounds like you are doing what you're suppose to do.  Over time, Ron's leakage has decreased.  I am sure this will also be true for you.  I am sure the walking is helping.  Ron's physical therapist has recommended lots of fruits and vegatables.  It is such a short time since your surgery.  Hang in there; things should get better!

Best wishes for all of you!

Aimzee

Posted 11/18/2010 2:30 PM (GMT 0)
Anyone have a clue to what caused this to happen?

Was having to get up 4-5 times a night to pee after RRP. Slowly I was getting better (once a night) and more continent. Yesterday I was leaking like a sieve during the day. Also, I had to pee 5 times during sleep.

While thinking about it I realized that I had not drunk a lot of liquids -- especially before going to bed.
Posted 11/18/2010 3:29 PM (GMT 0)
Alegar,

Did you add something to your drinks/diet that day that was "out of the ordinary"?

There are a lot of foods, additives, and the like that irritate the bladder, and may cause you to have a bad night.

For example, a glass of orange Juice in the morning (which I gave up early on) will now cause an afternoon of leaks. Likewise a single beverage with carbonation (beer, coke) will cause a long night.

Artificial sweetners, heavy spices, all can do this.

Look for something you had as a treat or excess in the 24 hours before.

Also I have noticed that if I have a lot more than normal physical activity (walk 4 miles instead of the normal 1-2), the floodgates open.

(All of the above are from my experience as a patient shakehead )

Posted 11/18/2010 3:51 PM (GMT 0)

Alegar,

While not to the extreme, I find myself getting up several times one night, and then only once the next.  Same thing with during the day.  2-3 days virtually dry and then considerable leakage the next.

Like 142 mentioned, I think it may be related to what and how much liquid is consumed.  I also find my sphincter getting a little sore from exercising it.  I am hoping this will improve over time.

Posted 11/19/2010 3:57 PM (GMT 0)
Thanks, Pocketman and 142:

Okay, I admit it...I indulged with a bag of OREOs and a glass of milk--about 6 ounces.

Seriously, other than the Oreos I cannot think of anything out of ordinary. Maybe the fact that I did only about 40 Kegels? It sounds like Pocketman and I share this experience. Since that evening I have only experienced very minor dribble. So far today I'm dry.

darn Oreos...
Posted 11/19/2010 4:10 PM (GMT 0)
Alegar:

When I was on the catheters for so long, my greatest output was at night. I would often deposit 1000-2500 ml of urine in the night bag each night. It's nots uncommon to output more at night I am told. Also, while going dry, don't forget the classic no-no's: Beer, fruit juices, anything with caffine, and anything carbonated can make going dry a bit harder. Yeah, I know, all the good stuff.

David
Posted 11/19/2010 9:46 PM (GMT 0)
Hope everyone that crossed over to the other side in October is doing better. I've read all of the posts above and it seems we each have our issues during the process.

While I had a tougher time on the front end (two surgeries and 12 days hospitalization), my recovery since getting out of the hospital has been gradual and steady. Operation was 10/6 (other one was 10/13) and catheter came out 10/16. Since then, I have been blessed with pretty good continence within a week to no pads. And ED therapy seems to be improving as well. I have been taking 25mg twice a week and a couple of times was able to support pretty good wood w/o the pills.

I had my first blood draw for the 6 wk PSA test Wed and will get the results on Monday next week. Keeping fingers crossed.

This BB has been great for support and sharing. Thanks everyone.
Posted 11/19/2010 11:51 PM (GMT 0)
If the oreos were a "low cal" version, they might have had an artificial sweetner. I am lactose intolerant, so a glass of milk is a nightmare.
Posted 11/20/2010 12:35 AM (GMT 0)
INwn,

Glad to hear you are doing better. You have had quite a ride so far. Good going on the incontinence front, and good luck
on that first PSA. Hopefully you will fly into the zero club without any troubles.

David
Posted 11/20/2010 12:58 AM (GMT 0)
For those fighting the insurance companies over the ED therapy drugs, you can obtain generic Viagra from ADC (alldaychemist.com) for about .60 cents a 100mg pill which you can cut in half, .30 cents a day..Yes, it's the real deal...Sildenafil Citrate, brand name Suhagra...They come in boxes of 40 pills..Buy one, get one free! How American!

Use this boards search window enter All Day Chemist to bring up the details..
✚ New Topic ✚ Reply
1234567