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Nervous One.
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February 15, 2013 at 11:25 pm #8706
Nervous One
ParticipantHi All,
I dont know if I should even be here but all indicators are that if I shouldnt be here yet, I will eventually. I saw blood in my urine a few weeks ago and made an appt with my MD this past Thursday. Gave a urine sample and had an ultrasound done. Long story short, they found something in my bladder approx 2.3 cm and now I have been referred to an urologist as well as a CT scan. Yes, i have not been diagnosed with BC, but everything I have read about the symptoms is leading me to realize the news I might receive after the tests. I’m really reaching out to see if there are any people who have been where I have been and can provide any advice.
Is there anyway to tell based on your symptoms if and how serious it might be?
Thank you in advance.
February 16, 2013 at 2:16 am #15015Greg
ParticipantDear Nervous:
I think we have all been where you are at the moment – wondering, anxious, fearful, impatient, dreading – all at the same time hoping that it is something different from what you think it might be. Bladder cancer is not uncommon and if it is that, you are among friends here.
If it is BC, make sure your urologist is at a major cancer hospital. If not, ask for a second opinion and don’t mess around with it. The urologist will want to examine inside your bladder with a cystoscope and if he finds a tumour he will schedule you for a transurethral resection (TURBT) to remove it along with surrounding tissue so that pathology can stage it and grade it. Get a copy of the pathology report for yourself from your urologist. Ask for it as it will not likely be offered. Based on that report, your further treatment will be assessed and prescribed. Until that happens, you don’t really know what is coming next, but once you know, we can help with a second opinion if warranted, share our experiences, offer suggestions for coping with treatments, etc.
Don’t despair. Keep us posted. Many of us have been on this journey for years and want to help as we can.
GregFebruary 16, 2013 at 4:38 am #15016Val
ParticipantWelcome Nervous
I remember exactly where you are. I was almost vibrating. I couldn’t sit still. I got a second opinion from my urologist’s partner and then went to a major cancer centre for a third opinion. Luckily I did that because it saved my bladder and I am now 3 years cancer free.
You are normal, feeling anxious, worried, in shock. There are some excellent readings from our main page. I recommend you read them. It will give you some more information than you know today.
I do not know if you can tell anything from your symptoms. The pathology report will be the best for that – although waiting for it is difficult.
I agree with Greg (but don’t tell him). Get a copy of your pathology report and get your bladder to a major centre hospital if you aren’t already at one. Jack (our amazing President but don’t tell him I said that) can give you a referral by one of the doctors on our “go to” list. It was the best thing I did for my health so I can’t stress that enough.
Come back here and ask questions, share your journey. You are not alone. We will walk this journey with you.
February 16, 2013 at 1:48 pm #15017Jack Moon
KeymasterNervous One, you and your doctor have done everything correctly up to this point. The cysto (when the Urologist puts a light up your bladder and has a look) is the next step. If there is a tumor, he will perform surgery and take several biopsies. Then the wait for the results. Bladder cancer caught early can be easily treated.
It is important that you get a copy of the pathology report from your Urologist and insure your family doctor gets a copy.
Keep us posted and we all will do our very best to support you and share our experiences. Feeling nervous is very normal, we all were. I am now over 5 years cancer free.
All the best,
JackFebruary 16, 2013 at 1:51 pm #15018Zina
ParticipantDear Nervous One,
Welcome to our site. As the others have said, it is very difficult waiting to hear results. However, I want you to keep in mind that unlike many others, you did exactly the right thing – twice! First, you saw the blood and went to your doctor. Should the news be unfavourable, take comfort in knowing that you sought help early and therefore significantly increased your chances of beating this disease. Second, you are seeking out as much information as possible. Armed with it, you will be in a position to make the best decisions for you and for your long term health. Please follow Greg’s suggestions as to next steps and keep us in the loop. We are here to share our experiences with you and offer our support. Best of luck.February 16, 2013 at 3:21 pm #15019Nervous One
ParticipantThank you for your replies. I really appreciate it.
You are right, I don’t know where to turn…I am 39 and turn 40 in August and have 2 small children that I am the primary caregiver for. Too many thoughts are going through my head. I think I slept for about 5 mins last night.
I am currently waiting for my urologist appt as the referral was done this past thursday. The doctor’s name is Jamal Munir here in Mississauga.
It seems like my lower back is starting to hurt now and every time I goto the bathroom, there is blood in my urine. How fast can this progress if this actually what all the signs are leading to?
Just my luck Monday is a holiday so it more than likely that I will have to wait until Tuesday to get a response as I have left several messages inquiring about my appt.
Is going to the emergency room an option to speed up the testing process? I live right by Credit Valley Hospital..
Ive never googled something so intensely before.
Paul
February 16, 2013 at 3:54 pm #15020Greg
ParticipantNervous: When I saw blood in my urine in Jan 2008, I waited till April to see my doc (I never was very bright!). It wasn’t till June that I got to a urologist. I was diagnosed with T1G3 which means stage 1, high grade or aggressive tumours. I had two and a half years of six TURBTs and 34 treatments of various immuno and chemo therapies. My cancer progressed to muscle invasive disease and in Dec 2010 I had my bladder removed and a neobladder constructed. Today I am the healthiest guy I know. Acting promptly, getting the best uros who are cancer uros (called uro-oncologists), not panicking, getting support from those who have gone through or are going through this journey and doing what your uro tells you are all essentials to getting through this. Impatience will drive you crazy, but it is always wise to mention to the uro’s office that you will fill a cancelled appointment if one becomes available. Jack Moon, our president, can offer advice on the uro if a second opinion makes sense — and living so close to Toronto, it almost always makes sense since a few of the uros in TO are world class. In the meantime, you are doing the right things.
Let us know when the uro appointment is when you hear the date. In the meantime, try to enjoy this Family day weekend with your family. Cancer or no cancer, family is much more important.
GregFebruary 16, 2013 at 10:50 pm #15021Jack Moon
KeymasterDr. Jamal is a top bladder cancer specialist at Credit Valley Hospital. He is personable and a very skilled surgeon and has a super staff around him.. You are in great medical hands going forward.
If you would like to speak to one of our members that has experienced what you are going through, just email me here on the site and I will be happy to arrange.
All the best,
JackFebruary 17, 2013 at 2:22 pm #15022Nervous One
ParticipantThank you everyone for replying. The waiting and the uncertainty is killing me…i appreciate the support. I havent even gone through any procedure’s and I’m already losing my mind…even haven’t confirmed if it is actually BC….
still i appreciate the words of wisdom and will definitely keep you guys in the loop and follow up with you when i go through the tests and get the results….
have a good weekend…
February 18, 2013 at 10:08 pm #15023Nervous One
ParticipantLooking for some feedback….went to the bathroom yesterday and it was a constant sea of red with bigger blood clots…went to the emergency room because it freaked me out. Worst its been since i have had blood in my urine.. They flushed my bladder with a catheter and when i got home, trying to go to the bathroom felt like shards of glass coming out of my you know what….
Went to the bathroom this morning and more blood and blod clots. Went 5-6 hours without going to the bathroom and went into emergency again. Same process again, only worse tying to get the catheter in.
Released from hospital, but this time with a follow up appt with a Urologist on Wednesday to have the Cytoscopy done..and to determine the ..
any help with how to deal with the fire coming out my….please help
February 19, 2013 at 2:57 am #15024Jack Moon
KeymasterThere are meds available to help with the burning. Your family doc, or a doc at emergency can write the script for you.
Good luck on Wednesday.
JackFebruary 19, 2013 at 3:44 am #15025Greg
ParticipantNervous one: Get those meds Jack is talking about. Also, next time they catheterize, ask for a smaller one (in diameter). They do come in a variety of sizes and the garden hose is not necessary in most cases. The glass shards become something of the norm for awhile I hate to tell you. But you do get used to it, usually just after you become a soprano! Some clinics suggest avoiding caffeine as it irritates. Also to drink cranberry juice, though i think it becomes a question of trial and error and you do what works for you. A warm bath, a heating pad, might help.
Glad to hear the uro appointment is earlier. Then you’ll know what you’re dealing with. All the best in the meantime – and try not to get too freaked out with the blood. It is startling to say the least, but you may find you get used to that as well for awhile. Hope not, but all the best to you.
GregFebruary 20, 2013 at 7:28 pm #15026Nervous One
ParticipantThanks for the feedback. Had my cystoscope this morning. The doctor had it up on the digital screen. I was able to see the growth in my bladder. He has ordered surgery to remove the what is described on my op package as a “Tumor”
He was not able to give me 100% confirmation that it is cancerous but basically told me, in his medical opinion that it is what I’m afraid off.
My urine tests from the ER on the weekend has come back positive for group d strep and I have been put on antibiotics for it. Is this normal for BC? I have read that some streps are fatal…..more bad news.
Dr. Carnat has graciously got me in for surgery next Thursday. Guess the truth of matter will really come up then. However, I’m already facing the news that it is BC.
There also was some documentation from my ultrasound that there was some minor issue with my left kidney.
He tried to get in ans put some dye into my kidney this morning, but was not able to…..should I be more worried than I already am?
Thank you again for the feedback….I had to tell my parents today what is going on….not an easy conversation…..
I was nervous before, now I am really nervous and scared….
Paul
February 20, 2013 at 7:56 pm #15027Greg
ParticipantNervous:
Best to ask the doctor about how common it is with BC. I understand that strep D is common enough with urinary tract infections. The common cold can also be fatal as can almost anything else in life so I would not get overly concerned with mortality at this point unless your doctor is suggesting such dire consequences, which he most certainly is not. Most BC is treatable with TURBT and BCG etc. As Jack has already said, and Val has reiterated, good results are very possible and while recurrences are not unexpected, they are often treated successfully. It’s good that your TURBT is next Thursday. You’ll know more when the pathology comes back from that.
It does not sound like you should be more worried than you already are – perhaps less would be healthier! Take it a step at a time and do not presume the worst. It is a shock to get cancer and it takes a good while to come to grips with that. But in the meantime, know that we all have been anxious, just as you are. Read up on it on this site and listen to some of the You Tube presentations by the docs on our home page. It may help you understand what is happening and what is coming.
GregMarch 12, 2013 at 3:49 pm #15028Nervous One
ParticipantSo it’s been a a cpl weeks sine my turbt. Got my pathology reports today. Stage t2 no mo high grade. I am now lost for words.
Didn’t know where to turn, so I thought I would search for some comfort here.
Doc is recommending chemo and then either partial or complete removal of bladder.
Please help.
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