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I’m in Ontario. Wondering how long a time span for others between diagnosis and treatment. I have stage 2 eurothelial cell carcinoma of the bladder. High grade. First diagnosed October 3rd. Undergoing CT scans and blood tests. may need a 3rd TURBT. But no talk of treatment yet.
Hello Hrudy,
Every situation/Case is different as you can imagine. Clarify for me if you would, what you are thinking of when you use the word ‘treatment’ as in But no talk of treatment yet.
I ask, because in your case, I see that you’ve already undergone TURBTs. So, your Urologist is scraping the Cancer out of your Bladder and hoping no further action is required. In my opinion, TURBTs are part of the Treatment. Take my case for example – I had two TURBTs and no BCG. I went for checkups every three months, then six months then once a year. I am a 10 year survivor. I stopped receiving the cystoscopy towards the end of 2017.
BTW, I am assuming your Cancer is on the lining of the Bladder, am I correct?
Thank you and my best,
Actually, my cancer is muscle invasive, not just on the lining. So with that, I believe there is supposed to be more traditional treatments such as chemo and bladder removal.
Hi Hurdy,
Yes, waiting is an issue. It causes anxiety to patients. It is not only bladder cancer. We need to realize that it is reality. At this time, we need to be self advocate and to a certain extent be a street smart to shorten the wait period if we are concerned about the waiting.
In 2018, Canadian Urological Association, Canadian Urologic Oncology Group, with input from patients advocate (BCC) published the consensus statement of how to improve patients journey and quality of life. They recognize that there are problems and try to improve not only the wait time but diagnostics and treatment by developing some kind of scoring system. For example, they consider the pathology report should be available within a week. It took me two weeks. Another example is that patients with gross hematuria should be seen by urologist within two weeks after referral by GP. Mine was almost two months but by going to ER shortened it by a month. Another example is that for patients with MIBC should get chest CT scan as part of staging. Another one is trimodality therapy should be started within 6 weeks of last TURBT.
I know the doctors know what they are doing but they should be telling you which part of body they do CT scan for and why they are doing and how the result of CT will impact your treatment.
Incidentally, the standard protocol for muscle invasive (T2,T3) bladder cancer is to remove the bladder. So, it is a bit strange that the doctor has not discussed with you about the next treatment yet. Though, the 1st line of the treatment for MIBC is radical cystectomy (RC) to remove the bladder, there are reasons why they do not proceed with RC. If the bladder is not removed, the standard protocol is chemotherapy and radiation therapy. The fact they are considering 3rd TURBT may mean that they are considering trimodality therapy. Treatment with trimodality therapy a bladder preservation for “selected” MIBC patients and it consists of maximal transurethral resection of the bladder tumor (TURBT) followed by concurrent chemotherapy and radiation. Below is the description of trimodality therapy at Bladder Cancer Canada site https://bladdercancercanada.org/en/bladder-preservation-treatment-options/.
A cancer wellness centre near my city suggests a mindful activity of your interest sometimes help to get us through anxious time like waiting.
Best wishes
Joe
Hi hrudy:
As a patient health researcher and BC survivor, that was the one thing I not only experienced personally but heard plenty of times from others. In my circles it was called “Waiting In The Dark”. Many people including myself, have experienced the constant waiting, waiting for the next step. It is nothing short of a huge mental stress and is detrimental to your health.
If you don’t hear real soon, I would call your uro’s office to make an appointment to find out what the next steps are for you. You need to know this so you can prepare and also need to get a timeline of how long it will be for surgery and if you need chemo beforehand. It is quite possible that the wheels are turning and things are being arranged but you don’t know that without a conversation.
If you do go for another appointment, I recommend taking a trusted family member or friend with you. It helps to have a second set of eyes and ears at these appointments. Your companion may hear things that you miss and think of questions to ask that you don’t.
Joe’s suggestion of attending a wellness centre is a good one. I joined Wellspring Calgary – a support centre here for cancer patients and their loved ones. Their classes and discussion groups were really helpful in addition to the help I got from Bladder Cancer Canada. Trying to keep busy while waiting is a challenge but it does help pass the time and takes your mind off of things for a bit. All the best and don’t hesitate to ask questions. (((HUGS)))
Hello Hrudy,
Although I never felt like I was waiting due to the numerous tests, assessments and consults I received, here is a summary of my recent timeline with MIBC. I would not present it being typical, but it may well represent the numerous challenges that often occur in cancer treatment and how they are overcome.
I was diagnosed with T3 muscle invasive BC on 2019-June-05 following gross blood appearing in urine and a CT scan. After a Cystoscopy then TURBT on July 31st the planned treatment was for eight rounds of chemo to eliminate/control remaining cancer cells. Unfortunately two days later I was readmitted to hospital for five days due to a severe septic infection originating from my right ureter. After three weeks of antibiotic infusions, a CT scan and bone scan I had had my first round of chemo on Sept. 5th. The chemo treatment for the following week was postponed due to very low blood cell counts. On Sept. 19th I received my second round of chemo, but again the following week’s treatment was postponed. I developed a second blood borne infection and was on oral antibiotics for ten days. After a consult with my cancer team on Sept. 26th my chemo treatment was terminated as it presented too much risk. A RC was scheduled for Nov. 4th.
On Nov. 1st I had an infusion of iron to help with my blood issues, and on Nov. 4th I underwent the eight hour RC operation with neo-bladder construction. Finally everything went as planned. Perhaps even better. I was alert after wakening, up walking and eating the next day, and pain level never exceeded 5 out of 10. I was discharged home after five days on Nov. 9th and am doing very well. Pain level has dropped to 2-3 out of ten with taking only Tylenol. Appetite and voiding are good, and catheter irrigation is easily done. Will have the catheter from my ureter stents removed tomorrow, but the urinary catheter will remain till month’s end.
I am extremely pleased with the friendliness, compassion, support, and care that I received throughout the past six months, as well as with the skill and proficiency of all those that treated me.
I wish you all the best Hrudy, will think of you, and hope to hear your story.
Take care, Don
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