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it seems so unfortunate I feel compelled to reach out to other cancer patients for solid morsels of information.
In all my other medical treatments I have been kept well informed by my doctors along each step of the way. If I am kept posted on what is going on, with a few what and whys explained along the way, then I can handle most anything that happens. That hasn’t been my experience with cancer care.
One cancer treatment message I have heard for years is that early diagnosis is vital. For sure, time is an enemy.
November 27, the attentive ultrasound technician who was doing the regular monitoring of my aortic artery aneurism spotted a tumor in my bladder. My GP called me in next day and I thought, “This is good. This is early diagnosis.” Meanwhile, my GP’s staff got me a December 15 cystoscopy with the urology surgeon. GP told me it would be to take tissue for a biopsy. Fine.
From there on to now, I have been in unfamiliar territory.
December 15 at Credit Valley Hospital, the urologist worked in two different procedure rooms with a nurse in each. He was in one while a lady got me set up in the other. An efficient set up. So much so, the doctor only spoke about three lines about how I could watch on the monitor, how he got a good look and we’re finished. When I asked about the biopsy he told me they were waiting in the next room and the nurse would fill me in. She only told me a TURB was next and I should walk over to the doctor’s office for the date and a pre-op guide book. At his office, the door was locked, I knocked, his secretary opened and gave me the guide pamphlet and said she would call soon with an appointment date.
Sorry about the long preamble and I hope someone is still hanging in there with me on this.
I had telephoned that office from before the cysto until now and never has anyone answered; only a prompt to leave a message with the notice not to leave repeat messages.
Finally, after New Year I was given that all-important TURB date of January 21 preceded by a pre-op clinic which was last week. No questions answered there. So tomorrow is the day I have been waiting for and yesterday I received word from the doctor’s office that I have a February 11 post op appointment with the surgeon. Twenty one days for the pathology report! That is something that should take 2 to 5 days to complete! His secretary said it generally takes 2 to 3 weeks which I do not believe. At this point I honestly feel like suggesting he skip the appointment and just fax me the report.
So now I rant. Hope it makes me feel better.
A quick tour through this forum tells me lots of people like stumblegirl, greg, marysue, jack moon and many others offer up more info and more truth than other sources like oh, let’s say the Canadian CS.
So here is the questions I ask of you who are experienced bladder cancer patients.
Is 76 days a reasonable length of time to wait to have a conversation with a urologist? Is it normal to take 55 days between discovery and treatment? Does anyone else feel like you are a brainless object bobbing in the water expected to go to where the slow moving current of the system takes you?
Hi there Dfitter, I hear your frustrations and I can relate. Being on this cancer journey is certainly not a walk in the park. Although my situation is different than yours, (I am also dealing with lung cancer (twice for surgeries) along with this bladder cancer. These cancers are not related by the way. However, I am really baffled with this bladder cancer too. Initially, trying to get information from my urologist was like pulling teeth. Either he didn’t have the information, or he didn’t have time to talk to me. I’ve been doing some research on my own and getting copies of reports on my bladder surgeries/treatments/cystoscopies etc. and although I don’t understand all of it, at least I’m starting to put some of the pieces together. So, along with what I’ve been able to read on this forum and the reports, I’m getting a sense of what’s going on. I was waiting for a date for another bladder biopsy when I had to go in hospital just before Christmas for another lung re-section because of a cancer recurrence there. I guess now I have to wait to recover from that surgery before I resume surgery/treatment for the recurring bladder cancer. Its’ a long journey from what I know now and from I’ve gathered from people on this forum.
I hope someone more experienced on the forum replies to your post soon, because many of them on here seem to know a lot about it.
Good luck with it and just know that you’re not alone. Take care and I hope you get the results and information that you’re looking for.
LorraineHi DFitter!
Welcome to the site that no one wishes they had to belong to. I’m sorry to learn that you’ve had a frustrating journey so far. This does add to the stress and tension which you don’t need. I too, found that getting information in the beginning was hard. I learned more from the half hour I had with the pre-op nurse than I did from anywhere else until I joined this site in 2010.
I was also told 2 weeks plus to get an answer from pathology after my TURBT. While waiting I went to my GP about another matter and found out that he already had a copy of the report 1 week later and he actually gave me the preliminary results and told me that it was up my uro to decide the next step. Knowing that, I called the uro’s office the next day saying that I’d seen the report at my GP’s and wanted to talk to the uro about the next step. He called at the end of the day. So my suggestion is to check with your GP to see if he will be getting a copy of the report. You might be able to find out earlier through the back door so to speak as I did. This is the most crucial thing to know the stage and grade of the cancer so you know what road you will be embarking on. Another thing too, once the diagnosis is in and if you are not comfortable with this uro see if you can get to see another. This organization can help you with names of other doctors.
I also encourage you to go on the link “Facing Bladder Cancer”. There is a Bladder Cancer 101 primer of sorts there with the low down on this disease under “Important Reading”. You can download it and print it off if you want to.
Feel free to rant and ask questions. You will find that a lot of us have been where you are and understand completely where you’re at. It takes one to know one. We can’t give medical advice with being fellow patients and not doctors but we can help you by sharing our experiences and offer suggestions of what to ask a doctor. For now a big ((((((((HUG))))))). Let us know what transpires.
In my humble opinion 76 days is far too long. In my case it was 18 days from 1st meeting with Uro, then cysto, then Turbt. Since my GP gets all copies of my Uro tests I had my pathology report from my GP in 5 days from the Turbt. In fact I have had 2 recurrences since original diagnosis and time between cysto and Turbt longest being 10 days and pathology report from GP in 4 days.
I agree with Marysue, ensure your GP is copied on all lab reports and tests ordered by your Urologist.
.I must admit I do have a very good Urologist and GP and both take the time to explain any diagnosis and answer questions I might have.
I had my annual cysto on Monday, and to my surprise My Urologist knew I had a heart attack in the fall and he had a list of the medications I am taking.
My GP I guess figured he should know.
I hope your journey improves and hoping your bladder cancer is non-muscle invasive low grade.
All the best,
JackThank you shelties, marysue and Jack Moon for your kind replies. Your input is very valuable to me.
Since I do not expect to be able to talk to my doctor before surgery tomorrow I will be telephoning to leave messages at his office and that of my GP tonight requesting the pathology report be copied to my GP.
Wow Jack, 18 days for the whole process and I am given an appointment just to go over the path report in 21 days and his office calls this the earliest possible. The NCI (US) website gives 2 days, American CS 5 and the Canadian CS gives some evasive explanation that dances around any statement of etime xpection. I am appalled.
For the life of me, I better change doctors after tomorrow because I have no confidence anything they might say (and remember they have never said very much) is straight talk.
To repeat, like I said in other words above, keep me truthfully informed and I can handle it.
Thank you all once again,
DennisDennis I’m sorry to hear you’ve been on a roller coaster of a ride with your bladder cancer. Unfortunately some specialists always seem to be in a hurry unless you take the bull by the horns & slow them down. Be as informed as you can about your disease so you are asking the right questions & don’t be shy about letting your doc know how worried or concerned you are. I was also one of the lucky ones and my GP got me in pretty quickly to see a urologist. My GP also receives copies of all cystoscopies , turbt reports & pathology reports. I’ve discovered that the urologist doesn’t usually discuss results of the turbt until your follow up 4 to 6 weeks after the turbt so if you’re concerned make sure to have an appt. with your GP to discuss any of your concerns. Making friends with your urologist’s nurses & office staff also really helps smooth the way sometimes when you have concerns. It might seem petty but you need as many people in your corner to look out for your best interests while you travel this uncertain road. It’s easy for hospital staff & specialists to seem like all of these procedures are routine when in fact they aren’t if you haven’t been down this road before. It’s scary & lonely lots of times. This site was a god send to me & helped me numerous times navigate my way. Please voice your concerns about the urologist you have now with your GP & perhaps they can help you with another choice if possible. I wish you the best of luck with your operation & hope your recovery goes well. Let us know how you’re doing when you can & when in doubt ask questions.
Flo
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