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35 with Questions

Wolverine81
Posts: 1
Joined: Oct 2016

I'm a 35 year old male and found out yesterday. I was urinating drops of blood after emptying my baldder, so my family doctor sent my to a urologist after ruling out infection. The urologist ordered an ultrasound that was unremakable (except for "thickening of the bladder walls") and said I probably had "inflamation." However, lab tests showed cancer cells in my urine and the doctor found a polyp and a suspecious area around the polyp during yesterday's cystocopy. I'm scheduled for surgery in about 3 weeks. The doctor said I was just unluckly to get this so young, but if I had to have cancer, bladder cancer was probably the best kind as it is very treatable. 

Some questions:

1) The cystoscopy was extremely painful (the nurse said that it is the worst for younger men since the muscles are very tight). Has anyone had concious sedation during a cystocopty. Since I wll have to undergo this procedure once ever 3 months for the near future, the pain facture is not appealing to me. 

2) Is it common for reocurrance in younger patients? I know I have to be checked for the rest of my life, but what are the odds of it comming back after surgery? 

3) The urologist said he would fill by bladder with a chemotherapy drug after "scrapping out the tumur." Anyone have any adverse reactions to this. 

I'm still in shock about this diagnosis, so I'd be curious to hear about others' experiences, particularly those younger patients. I read that this type of cancer occurs less than 1% of the time in people under 40. I keep wondering if I'm just unlucky or if I did something in my lifestyle to cause this (I quit smoking right after college - about 15 years ago). Thanks for any input.

-pd

GingerMay's picture
GingerMay
Posts: 115
Joined: Sep 2016

I am experiencing a cancer journey as a spouse to my husband who was recently diagnosed.  He would never be on this site, but I am here often.  He is a bit older than you, in his 40's.  I can only reply with what I have seen and heard from his doctors, but I hope it helps.     

First, I cannot comment on conscious sedation but he did say the pain was pretty extreme and the pain meds he was prescribed did not actually reduce his pain.   

Second, is it common to recur? His doctor said there is a 50% recurrance rate.  However, I suggest asking your doctor as I assume your individual case could vary.  Your doctor will tell you the Stage and Grade of any tumor/polyp that is removed after the lab does the analysis, so it may be part of your conversation with your doctor anyway.    

Third, the chemotherapy drug that was administered was Mitomycin.  If you are having a TURBT procedure, which sounds like you are, I believe this drug is commonly given immediately after.  He did not have any adverse reactions to that.  

 

I know it's overwhelming and hard to believe.  As for anything in your lifestyle that may have contributed, I'd say don't spend too much energy trying to figure it out as you may never know for sure.  Follow a healthy lifestyle that makes sense to you and still allows you to have fun.  My husband never smoked, never ate fried foods, has run 9 marathons and would otherwise be the picture of health.  Everyone was shocked.  To me, it just seems random.    

All the best to you.  I will keep you in my good thoughts.        

     

      

HalBo2
Posts: 3
Joined: Sep 2015

Wolverine81,

1. Never had sedation for a scope but the urologist has given me an RX for 10mg of valium to ease the anxiety of the blasted thing.

2. If it turns out that you have bladder cancer, strap in, you'll get used to regular checks for a long time to come.

3. After the TURBT the urologist will use Mitomycin to attempt to kill any cancer cells that may still be floating around in your bladder after the surgery. These cells can sometimes reattach and begin to grow again.

All this is assuming that you have non-muscle invasive BC. If it turns out to be stage 2 the story could be different but please don't borrow that worry now. At face value it doesn't sound like it. There's no telling where this could have come from. Could be the smoking, could be genetic. It's there, that's all that counts now. There's lots of info out there on the internet on BC and it's treatments. NMIBC is very treatable and has a high cure rate comparatively. I've found lots of info and support from sites like this. Here's another one thats much more active:  https://www.inspire.com/groups/bladder-cancer-advocacy-network/

That site has a pretty extensive library of info on BC so you can begin to educate yourself and participate actively in your treatment.   

Heres a link from the AUA you may be interested in as well: https://www.auanet.org/education/guidelines/non-muscle-invasive-bladder-cancer.cfm

And here's a great source for you: http://www.bcan.org/learn/educational-programs/videos/

I wish you God's grace and a healthy bladder,

Hal

 

 

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