Blood clots Help

Steps forward, Sir Swan!

Peace of mind, consulting with a doctor!

Write down questions you wish to cover & share specific details as to what you are experiencing.

Positive thoughts sent your way ~
CYCLONE ~ # Iowa State University

Saw doctor and will have a cystography Friday.
My urine sample was like pure blood.
He can irrigate the clots and burn if he needs to.

Glen

Thanks Cyclone
In the other exam room another patient was being taught to insert a catheter. He had his wife with him and I could hear it all.
I am lucky I'm not there and hope it never comes to that.
I hope the doctor can flush it out and make any "repairs" if needed.
Not that I'd change my treatment but I didn't grasp how tough these side effects are.
My overriding fear is having to use a catheter full time.
Yes I'll deal with it if it comes but gee the thought scares me.
In the meantime I'll hydrate with good NYC water and when upstate, bottled water. Where I live upstate the water source is the Hudson river. It's treated but it's still Hudson river water.

Glen

I'm dealing with it right now. I first had hematuria on Nov 12 and was quite alarmed. This is nearly 5 years after radiation. I got into the urologist who did the cysto and confirmed radiation cystitis to the bladder. Also had imaging to rule out cancers or stones. Today was the 5th time I've had hematuria and by far the worst that includes clots. I've been drinking lots of water and seeing more clear urine but still blood. Hope to get through this episode, doesn't seem like anything to do but keep drinking water.

Started the cystography but when he got to the edge of the bladder, he came upon a stricture. He didn't go further.
Doctor explained that if he forced his way in that the stricture could get worse.
He doesn't think that the bladder has cancer but thinks cystitis is most likely present.
He's scheduled a appointment with a specialist.
He said the specialist can cut away the stricture and apply a steroid then will be able to view the bladder.
I'll need a special scope that's more sturdy and requires I be sedated.
The doctor is Gregory Alan Joice and I looked him up. He graduated Columbia and served at Johns Hopkins so he seems qualified. He specializes in urethra reconstruction and radiation damage treatment among other specialties.
Doctor said it can be fixed so I'm a little relieved.
Appointment is February 28th

Glen

My Dad had a couple of strictures in the years after brachytherapy seeding when peeing became difficult. As I recall, the doctor used a balloon catheter dilation to expand the stricture which solves the problem for a time then needs to be done again if and when symptoms return. He said it was not bad and solved the problem. He did not have any of your other issues so might not apply here but at least there are treatments that do not require cutting and lasers.

Glen,
The scope through your stuff and into the bladder seems like it would really grab one's attention. Is it pretty bad? I hope I never have to do that.

You're sure going through a lot. I hope you get it resolved.

Good luck Glen, sorry you need to deal with this. I hope it gets resolved quickly and you finally get some peace, you deserve it aftr all you've been through

Just spotted this thread, Glen. I've been dealing with radiation-induced hemorrhagic cystitis for a couple of years. It started four years after salvage radiation. Went for a possible cure, 60 trips in a hyperbaric chamber about a year ago. I think it helped some, but recently had bleeding and scabs that were concerning. I got back in touch with my urologist who wants to start with a urine test (to look for bladder cancer cells, I think) before poking around further. Hope you are finding good strategies!

Before subjecting me to a cystoscopy, they did an ultrasound to look for a problem up north of the bladder and, finding nothing, went ahead with the cystoscopy. The cystoscopy was painless. Uro looked around inside the bladder (I could see the same screen he was looking at) and pronounced it radiation-induced hemorrhagic cystitis. I could see reddish areas where the bladder wall was damaged.

There are many treatments available. None of them is sure-fire, but hyperbaric is popular because of high efficacy and very low toxicity. I am not highly claustrophobic so I had not issue with spending a couple of hours inside a tube. The tube was made of glass so I could see around the room, see some sky out a nearby window, and, though I wasn't allowed to take reading material or mp3 player into the chamber with me, they had a personal video screen up above the chamber with unlimited access to Netflix. The medical team was great and would come running to change the channel if I got bored.

There are also multiperson hyperbaric oxygen therapy rooms that can accommodate 6-8 "divers" at once. Here's one at the Mayo Clinic.

Glen, I have not yet gotten to the stage where I'm peeing blood every day so hyperbaric may or may not be an option, but I want you to know that there are alternatives to lying down in a tube and the low risk of side effects is something I consider very important when I'm making my treatment choices being that the bleeding four years after radiation is a risk that was not mentioned when I signed up for salvage radiation.

We'll be around when your situation becomes clearer and options for treatment come into focus. I'll be sending positive thoughts your way!

Tomson

Having a bad day with lots of blood and small clots.
Hope it's just irritation from the scope

G

AZ guy the answer is get to the ER fast.
I had retention from external beam radiation early on at my sixed session.
I tried and tried to urinate Even taking a hot bath but it got very painful and rushed to the ER to get catheterized.
I'm not doing well right now with small clots.
I wish the appointment was sooner because the doctor will just talk then schedule the larger scope so it might take a while.
So yeah I'm scared of blockage and wish the wheels turned faster.
Lots of blood too. Then again it did stop now and again


Glen