What is this and what does it mean….

[DeanNelson]

Haven’t posted in a while been really really sick…went to get a cystoscope and it was unbearable!!…..

Saw this in my chart..

FRAILTY ASSESSMENT:

RAI Cancer Score:

Score: >50

RAI Non-Cancer Score:

Score: >50

[Tall_Allen]

RAI (risk analysis index) is used to assess how likely one is to survive surgery. It is based on multiple risk factors on a questionnaire. You would not be a good candidate for surgery right now. But I suspect you already know that.

[DeanNelson in reply to Tall_Allen]

Yeah…but dammit….

[DeanNelson in reply to Tall_Allen]

I’m NOT ready!

[Tall_Allen in reply to DeanNelson]

Were you planning on having some surgery?

[DeanNelson in reply to Tall_Allen]

I had a cystoscope and 70 percent of my bladder is necrotic ..I’m having a hard time peeing and my lower abdomen/back/hips hurt

[Hidden in reply to DeanNelson]

Dam ! Sorry to hear that .

[Djorko in reply to DeanNelson]

I'm new to this. Don't understand some of the lingo yet. I just found out I have cancer stage 4 prostate my PSA was 40 and they did a bone scan haven't heard the results yet nor the steps to take from here. More concerned about my wife than me.

[jfoesq in reply to Djorko]

Your situation will become clearer after the bone scan. Everybody situation is different (I. E. Age, other health factors, diet, exercise, family history, extent of disease….). However, you should know that even if you end up with a dx of bone Mets, many people , myself included, respond well to treatment and live 10 years and longer. I was dx with a few bone Mets at age 54 and am now past 9 years of treatment, with a few additional modes of treatment available to me when my initial mode (Lupron and Zytiga) fail me. All of the treatments come with side effects that nobody likes, but many of us are grateful for the treatments despite the side effects. Best of luck, keep a positive attitude, exercise and eat a healthy diet.

[Djorko in reply to jfoesq]

Thank you, the support group has changed my whole outlook confidence level and a little bit of control in spite of the chaos.

[CharlieBC in reply to Djorko]

Djorko, This is a great site for the nuts and bolts about prostate cancer for both you and your wife. There is a couple of sites for caregivers. My wife goes on that to talk to wives outside of my earshot. It allows them to commiserate about our situation.

[SalishSoul]

Also for predicting likelihood of needing hospital resources in certain period of time.

[SalishSoul]

🙏So sorry you are having a rough go of it. 🙏

[Hidden]

Sorry youre sick . How are you sick? Take care

[Fanger1]

Hi Dean,Sorry to hear you're not doing so well. Maybe a good barbeque tomorrow will help lift you up. Hoping you feel better soon🙏

[Hidden]

Sounds like an amazingly tough spot. I cannot begin to even to come close to understanding your situation but I hope there are some creative docs there.

[DMohr011]

Nothing worse than pissing problems. My suggestion is to avoid any TURPS (if you have yet to be treated) and learn to self cathater.

Seems we share the ductal trait. Hang in there! We will get thru this!

Dave

[DeanNelson in reply to DMohr011]

Already had one when I was first diagnosed..ugh

[DeanNelson]

I cannot think of catching myself my cystoscope hurt so badly it was the worst pain I’ve ever felt in my life..

[Spyder54 in reply to DeanNelson]

Dean, so sorry Man for your tough position. After my 2nd Cystoscopy, I told my wife never again without Gen Anesthesia. The ADT shrinks our genitalia, which only makes it worse (for me anyway). Just had a 3rd Cystoscopy at MD Anderson in Houston in early May but with light Gen Anesthesia. Out for 30 min or less. It sounds like they found what they needed, so hopefully no more Cystoscopys for you.

One of my Co Workers had PCa and Bladder Cancer, and had his bladder and Prostate removed at Mayo in Jacksonville, FL. They built a Neo Bladder out of his small intestine. He is continent, but needs to self Catheterize 2-3x per day, but sleeps through night. Think it was an 6-8 hour Surgery. They are saying you are not in a good place at this time for Surgery correct? What can be done to get you in a better condition for Surgery? Is it a cardio issue? This is like a Chess Match, there is a best move, just need all the information to make that move.

Hang in there…this too shall pass.

My very best to you and yours,

Mike & Barb

St Pete

[DeanNelson in reply to Spyder54]

Thank you so much for the well wishes

I had a cystoscope at MD Anderson in Huston….when I was first diagnosed it was painless….they were SO GOOD at making sure I wasn’t in pain….then I loss my healthcare insurance because I couldn’t work…

Unfortunately….

I’m now with VA healthcare…. When I had my scope last week, was the FIRST TIME I’ve seen an MD in the 2.5 years I’ve been at the VA….the rest has been nurses or PA’s….

The doctor was a complete ass, treated me like I was bothering him……

It’s been a good run…..but I’m ready to die…..the pain is unbearable and the VA will never help me get to a better place to have surgery…we are just numbers….

[Spyder54]

Jesus Dean, you’re only 60. I see that lovely picture of you and your wife in your icon. You look like Rock Stars. Medicare is age 65, but cant you get that early if you are disabled? The VA Hospital here in St Pete is First Class. Sits on a spectacular piece of Real Estate. One of the Docs lives in our neighborhood. Good guy. Several neighbors speak highly of the facility and staff. Maybe you just need to get to a better facility. Better yet, there are good lists of Human Trials which are free to you, that may have a solution for what is a good next step. Hang in there Bro. If you need a place to stay while checking out the St Pete VA Hospital, we have room for a Brother from HU, especially for your service to our Country. A cure is coming. We just have to live long enough.

Best,

Mike

[Hidden]

Go to the VA in Ann Arbor. It's a first class facility.