Post Radiation Problems...Need Advice

My husband was diagnosed October 2012 with PC.  Gleason 4+3.  We opted for radiation.  In December he had the 6 month lupron injection (major side effects: muscle loss/emotional...totally not like him).  In February he had seed implantation and tolerated it fairly well.  In April he started 4 weeks x 5 days per week of EBR.  3/4 of the way into it he started having issues (painful/frequent urination, UTI).  Now he is 5 weeks post radiation and he is having NOTHING but problems.  He's on his third catheter due to very painful/frequent/inability to urinate.  He's been to the ER three times due to horrible spasms.  The radiologist sends us to the urologist; the urologist tells us we chose radiation over surgery and sends us back to the radiologist.  They seem to be guessing.  I'm ready to push for an MRI/CT scan...something.  He hasn't been to work in 4 weeks; rarely leaves the house, can't drive with the catheter and is EXTREMELY depressed. We have children and he can no longer throw a football with our son...it's killing him (forget about golf and working out).  He's emotional...very unlike him and now he's beginning to worry that he has permanent damage.  The radiologist tell us this is unusual which doesn't make us feel any better.  For those that have undergone this, is this normal???  What are we looking at for a timeframe with regards to recovery.  No one can tell us anything.  He's been given pain medication, steroids, antibiotics (4 times), anti-spasm meds...nothing works.  I'm looking at a suprapubic catheter as a possible option so his poor urethra can heal a bit.  Does anybody have first hand experience/advice?  Please help.  As the caregiver, I'm very frustrated seeing him in such pain.  He's not even remotely close to the same person he was 6 months ago and I'm really starting to worry about him.  Thank you! 

demtap,

so sorry to hear of your husband's post radiation problems.

I had lots of stricture problems post surgery, and spent a total of 1/2 year on various catheters, and underwent 6 stricture operations to keep my bladder neck open. All of them failed, in some cases, my bladder neck scarred closed within a month.

Then, after my surgery failed to stop the cancer, I underwent salvage radiation (39 treatments totally 72 gys of IMRT). Because I had so much stricture problems, the uro and the RO decided it was best to have a Suprapubic catheter in place for the duration of the radiation. So I had the operation to have it installed.

My radiation was administered on a dry bladder, due to the catheter in place. Huge mistake on the part of the RO. My bladder and bladder neck was burned badly by the radiation.

To make a long story short, I had to keep the Suprapubic catheter in place for 51 weeks. I was never able to urinate naturally again, or when it was attempted, the pain was too much to bear.

After nearly a year of hoping for natural healing which never happened, I consented to the Ileal Conduit Surgery, a very major thing. My bladder was bypassed, a conduit (tube) was formed, and I ended up with a stoma (Urostomy). Since then, I urinate from a hole in my side into a plastic bag. It will be this way for the rest of my life.

I was on Ditropan for the bladder spasms for nearly 2 years. It helped some, but never eliminated them, I estimate I have endured 4,000-5,000 bladder spasms. Even though my bladder was bypassed, and non-functional for almost 3 years, I still have bladder spasms.

For the burning, they tried pyridium tablets, again, they helped a little bit, but never eliminated the burning feeling when they had me attempt to urinate naturally.

A Suprapubic catheter is a good solution as opposed to foley catheters if your husband is going to continue to have these issues. As the Suprapubic will exit his body to the left and below his belly button area, and will not pass through this bladder neck or urethra, giving it extra time to heal.

Most uro's will want to change out the tube every 4 weeks or so due to sanitary reasons.  The hole can seal closed in as little as 3-5 minutes, so the doctor has to be able to change them out really fast.  Because of all my radiation damage to my bladder, these change outs were some of the most painful things I ever underwent, there were times that it took 2 people to hold me down while the doctor pulled out the old tube and put in the new.  Hopefully your husband will never have to go through that.

If there is anyway I can help you, I will be glad to.  If you want to talk to me or e-mail, just let me know and I will  arrange it immediately.  I am probably the only person here that remotely underwent anything close to what your husband is experiencing, so I feel for both him, and you for having to watch him suffer.

Hoping his doctors can get to the bottom of it fast.  BTW, the Suprapubic catheter was much easier to live with (except for the change outs) on a daily basis, then having a foley catheter coming through his penis irritating him all the time.

My wife is a nurse, and she was allowed to flush out the catheters when they clogged (not hard to do).

Please let me know if I can help you.  I absolutely understand.

david in sc

Post Edited (Purgatory) : 6/29/2013 10:08:43 PM (GMT-6)

demtap,

I was in the middle of typing a reply that was very similar to that of njs except my kids are 20 years older than his...and maybe yours, too.

His counsel on making contact with an advanced clinic is spot on if you really want a better shot at an answer. Your earlier post in October and your comments in this one suggest your comfort level and confidence in your medical team are not where they should be. Firing your current team and going elsewhere could be beneficial.

Not being in quite the same shoes, I can't be of much guidance in the experience department. But even from a distance, and in the comfort of my recliner here in my den, I can pray for you and your family for comfort, wisdom, courage and assurance as you face the days ahead. I did that just now and I trust you have others in your circle of friends and family who are doing so as well.

Thanks for sharing your story so we can be of some encouragement and help along the way. I join others here in wishing you the best.

John

..

Again, the suggestions of a longer term Suprapubic catheter would give him better relief, and a chance for the doctors to find a better solution for what is really behind all of this. If it is some form of radiation damage, then it will not be a quick or easy fix, so some type of temporary relief should be a big help.

david

Hope he gets some relief soon. I am so sorry you're all going through this. My prayers are with you and your family.

demtap,

This was so difficult to read and I hope you are coping as well as possible. I also live in So Cal and since you're here I think you might be able to benefit from seeing either Dr Scholz or Dr Lam at Prostate Oncology Specialist in Marina del Rey. They are oncologists, not radiation oncologists, but all they do is work with prostate cancer patients so they have a deep body of knowledge. If they need to refer your husband to a radiation expert, they will also know the best.

Dr Lam has been my oncologist since shortly after I was diagnosed and the level of expertise was night and day different from anyone else I spoke with.

I wish you and your husband all the best and please keep us posted!

Michael

demtaap:

Good luck. I am so very sorry to read of your husband's suffering.

Was IMRT his primary treatment, or was it salvage, after a failed surgery?

I can't offer anything other than to second the recommendation regarding Dr. Lam.

I travel from mid-Michigan to see him. My research determined he is the best and so far that appears to be the case!

Mel

demtap,

You are your husband are in a difficult spot and it is so hard to provide good advice. I had a major surgical complication that took several weeks to identify the root cause and two months to fix. It is not the same situation as your husband's but I will do my best to extrapolate.

First order of business is find some stability ASAP. I had a nephrostomy tube temporarily installed. That was step one in getting back on track. So, he probably should have the suprapubic catheter installed. It might help get his situation stabilized until experts can consider his situation. You may need to push very hard on this .. perhaps go to the ER and demand it. Also, he may just need a lot of extra healing time after the radiation. The suprapubic catheter can perhaps get that process started. I had the nephrostomy tube for 2 months. I learned manage with it. I even took an air travel business trip with it.

Another thing to remember, he is newly on Lupron and has had a major medical setback. This is a big recipe for depression .. I have been there. Consider having the doctor prescribe an anti-depressant.

His lack of appetite (presumably since you say he is losing weight) is concerning. Has he had a urine culture to identify any infection? It is not enough just to have him take Cipro, etc. I had a drug-resistant E-coli infection that totally zapped my appetite for weeks. I lost a lot of weight before they figured out the issue.

Finally, as others have suggested, get some proactive expert advice. Find someone who will aggressively address the situation. Do not accept hand-offs between doctors.

Your husband may need urgent help. Do not hesitate. If you do not go the ER tonight, start aggressively working some next steps first thing Monday. Push! I hate to be so blunt in an online forum but better safe than sorry.

Finally, I am doing well today. I am none the worse for wear. Your husband can get through this and eventually thrive. He needs help getting over this hump.

Best wishes. Keep us posted.

Southern Comfort

Oops, I meant they don't accept HMO, only PPO. Tired eyes...

Hi demtap,
Sorry to hear about the insurance with Dr. Lam's office. Interestingly, they are out-of-network with my PPO (Aetna), but I still get reimbursed for just about everything. That said, I can see how it would be different with an HMO.

I think your strategy with Dr Smith is a good one. Not sure who the partner is that is #4, but Dr Robert Reiter is the head of the prostate cancer program there. I think it's a good place to start.

I wish you and your husband the best of luck and please report back!

Michael

Good word, Melissa! Glad you had better responsiveness today!

I have some radiation cystitis and am currently on Elmiron which seems to be helping. It appears to provide some protective coating to the bladder. I had a recent colonoscopy and saw the inflammation and bleeding in the rectum...figured my bladder probably looked similar.

My pain/discomfort level is down considerably, or having the spasms I once had and I am no longer peeing blood or large clots. I had been on Detrol to calm things down in the region but it was not as helpful as I had hoped. So, the uro switched meds.

Sounds like you all may have a great holiday and I hope that is, indeed, the case.

..

So nice to hear you have a plan. And it sounds like you have a doctor you can rely on!

FYI, I take neurotonin for my HT-induced hot flashes. It's helpful there and I hope it also has efficacy for your husband even though it's for different symptoms. As for anti-depressants, my experience is that most take several weeks before they kick in. But I'm certainly no expert there.

Good luck and I hope it's a short bout of radiation cysts. As someone that recently underwent radiation I know the possibility lurks in my future as well. Have fun at the beach on the 4th (we'll be on the Esplanade in Redondo...)

demtap hopefully he (and you) will get some relief with sleep.

Don't worry about posting here, that is what places like this are for.

Hang in there.