Ryan made 2 frightened postings here on 16th. September now it is October 22nd. and no further sound from him - is this another statistic? Was it stress and unsympathetic handling by his medics that gave him a coronary or did he have the flexi/cysto and get an all clear with advice to be a bit more picky on his sexual partners?
Frank Haematorea (which I can never spell!) is scarey and one of the standard jokes is 'how can you tell someone who has had Urinary tract cancer? - they can't pee in the dark!
It is hard not to stress yourself by checking the Ribenna output EVERY time!
Don't panic too readily with blood in the urine, but DO TAKE IT SERIOUSLY even if it only happens once.
Pressurise your medics for every test possible but always be aware that the Kidney has around 70 miles of tubing and the tiniest self healing annurism can cause blood in the urine - a blow to the kidneys, a sudden jolt, strain from lifting, excercise stress can all give blood in the urine.
BUT NEVER assume it will go away - cancer caught early is just a Challenge - failure to check due to fear or indollence could prove a death sentence!
The last time I had blood in my urine was last Christmas eve and having already had a radical nefrectomy and ongoing bladder cancer I was convinced this was cancer in the remaining kidney - Christmas was NOT a very happy time for me but I was determined not to blight it for others so I kept quiet - phoning my urology unit at the hospital and speaking daily with the sister and also having my hand held by CancerBackUp who were all marvellous I was slotted into the first flexi clinic available.
I was soooo pleased when they saw redness and what seemed to be a Ta in the bladder - Hey yup PLEASED to have bladder cancer!
In for a TURBT a week or two later and it was all clear as the surgeon removed a 1.5cm. crystaline bladder stone which had damaged a capillary causing the haematoria.
No BT this time - TUR = Trans Urithral Reprieve!
I have the crystals, now broken up, in a specimen container on my desk to remind myself that it isn't always the worst possible outcome!
to give you a short summary:blood was found in my urine. Urologist sent me for IVP (x-rays) and the following week I picked up my x-rays and brought them with me back to my urlogist. He read the report and saw the x-rays.
I had three tumors and he scheduled me for surgury the next day - had to add me on to his list of surguries that day. Removed three cancerous tumors which measured approx. 10 cm. in total. I am now 54 and this started when I was 52. Am going through BCG treatments now. On the 5 year plan.
Hope that this gives you some light on atleast my sitution and above all my doctors promptness.
Since March '05 I've had 18 BCG treatments. After the first 9 treatments when the feverish symptoms lasted more than one day I was reduced to half doses which is suppose to be as effective.
Last month I had a cystoscope and was found to have small 1cm. suspect growth which was taken care of in office.
Nov. I start 3 more treatments which is in the treatment plan. In Dec. another cystoscope.
I have had most of the treatments on fridays so I can have the weekend off. What I wasn't doing at first was not drinking enough water after holding in the BCG for 1-2 hours. Water is necessary to flush the bladder.
The procedure is not bad, maybe alittle uncomfortable, but it seems to be like a routine office visit now.
Ryan, I completely understand your anxiety, you sound a lot like me. A month ago I had significant blood in my urine, it was actually dark in color. I freaked and went straight to the doctor. The doctor seemed really worried since I was an ex-smoker who smoked 2 packs a day for twenty years, history of cancer in my family, and no pain. They did blood and urine tests and did a CT scan the next day.
Two weeks later I had a cystoscopy and was sent away with a clean bill of health. The urologist said that sometimes there is blood in the urine and nothing is wrong. At your age, and your short history of smoking, I'd try to think for the best and wait. The cystoscopy isn't that bad of a procedure. It does hurt (for a few seconds), but is very brief and the whole thing is over in a few minutes. It's definately worth it for the peace of mind alone.
My opinion, and the doctors never corroborated this, is that some medications I take, including daily aspirin for heart attack prevention, caused some clotting problems and I probably bleed more easily than most. I'm probably wrong but you never know. With your heart condition, perhaps you've been taking some blood thinners or something that causes you to bleed easily.
Anyway, my best wishes and prayers to all you brave souls. I'm clear for now, but seeing as how everyone else in my family has ca in some form or another, I feel it's only a matter of time. Good Luck!
I'm sorry to hear about all your worries. If you are like me and have a phobia about medical stuff such as needles and procedures, being put to sleep and just being around people in white uniforms...then maybe you should investigate some kind of behavior mod therapy to help you get through these things.
Our survival instincts are a very strong adaption and usually serve to get us through the impossible, but personally I can't do a blood test without valium to calm me down first or I run away in a panic, all very annoying to say the least. I read somewhere that more than 10% avoid medical treatment due to phobias and that is one of the biggest problems in medicine! And totally ignored. Since you are afraid of mind-altering drugs I'd say behavior modification could go a long way and certainly be better than nothing.
First off, you need to see if those urine tests were 'cytology', checking for malignancy, and if they weren't, why not? An addition such as BladderChek or the FISH test could also be done and would increase the chance of cytology being accurate. None of the tests are 100% and that's why the uro is claiming a cystscopy is the way to go. He's probably right. His insistence may be a reaction to your attitude if you seem reluctant. I've found many times that doctors react impatiently when I'm overly anxious and afraid...Something else I've learned through experience is that doctors don't want to discuss more than one problem at a time! So my advice is to stay focused on diagnosing the blood in the urine. Your other symptoms such as the funny feelings when urinating are connected to the uro's field of expertise and he should be willing to take them seriously.
There's no use in agonizing over the hows and whys of what kind of bacteria or infection you may or may not have caught from sex. Just get the tests done and then take the next steps.
BTW, there is an epidemic among young people of HPV, almost 50% have it now in the US. Not all of it causes warts, most of the viruses have no symptoms, yet can cause cancer down the road. So it's important to check for HPV.
Hey - thank you for the response. I wish there were details on the frequency of cases per 1k or 10k or 100k people based off age brackets. I smoked when I was in HS and out of HS. I'd say from 1996 to 2000. At the end I was up to 2 packs a day of marlboro menthol lights but I quit cold turkey in 2000 and never smoked again.
Chemicals, I can't think of anything besides cleaning chemicals for regular use to clean my place. I did have a bladder infection when I was 12 (really bad one too) and had my kidneys checked out + xray done. It went away after antibiotics got through me. The only other thing I can think of and this is really embarrassing to talk about but at the time back then we had a large pool and jacuzzi outdoors. I would sometimes use the pool jets to get off and I remember sometimes if the angle was wrong it'd feel like water shot in. There was always chlorine in the water but I'd imagine it went out afterwards.
I stopped doing that after the bladder infection though. It freaked me out at the time.
I tried to get a urine culture done today but my damn regular doctor wouldn't forward it off without a script from the Urologist. I was so upset because I went there, peed in a cup and left it with them but they ended up dumping it at 4pm. It doesn't make sense to me, what's the big deal about writing a prescription when you're a regular doctor? All I wanted was a culture - it's so stupid. I hate medical processes. I have insurance that requires no referrals so I should be able to do what I want. Now I'm going to have to wait until Tuesday to get a script for that.
My main concern about getting the culture done asap was I've been getting pains about an inch below my belt line which travels up at an angle towards what I can only imagine as being my kidneys. I think that blood aside, the girl I've been seeing may have given me an infection. The pain is making me uncomfortable and I just want to know if there's something going on. This pain is really new, it just started shortly after I last slept with her (couple weeks ago). She just found out she has an infection a few days ago.
I'm just really scared. I'm like already convinced I'm not going to be strong enough to do any of this especially with my anxiety. I mean the scope I can probably get through but if I need surgury I don't know if I can. If it has spread, I'd almost rather find a way to kill myself than deal with surgury. I'm scared of putting my life in other people's hands even when I might die. I don't know, it's just really really freaking me out with this and the heart stuff.
I found the post about the deep breathing, it's in Superficial Bladder Cancer and it's on the very first page. The post is by Whitlo and is titled LIVING WITH BC, and my post that describes this technique is #8. I hope you can use it, and that it might be of some help with your anxiety.