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<p style=”text-align: left;”>I would like to talk with a woman with an Indiana Pouch if possible</p>
Xandra
I am trying to decide on this same issue. I thought perhaps the Indiana pouch, which is what I told my surgeon. But as I wait the months for the surgery I am wondering whether the Ileal conduit would be better.
XandraXandra
<p style=”text-align: left;”>Hi Sue,
Just finished with the women’s support group, I heard about your TURBT. I hope that everything goes/went well, it’s the waiting now for pathology results. That’s always the hardest part for me.
Sending you big hugs.
Mary</p>Xandra
Here in BC I have just been booked for the first of my six infusions of 2 chemotherapies after my recurrence of high grade cancer. So perhaps it has not affected the infusions. We are going down slowly in new cases. Hopefully the worst is over.
Xandra
The pathology results from my TURBT high grade non-invasive. I was called by the Medical Fellow, not Dr.Black. I was told that I would be put on two chemo drugs infused weekly for 6 weeks then monthly for a year. With the first diagnosis I was given a 3 year timetable. This time just a year. Perhaps recurrence expected by then?
I asked whether I could continue with BCG seeing that it is considered the best course of treatment but told no because I have failed the treatment, or rather my cancer has.
I wondered whether my RA drugs blunted my immunological response for the first two of three treatments. But it seems no one has study this. People on immune suppressing medications. I stopped the RA drugs after I noticed that I was not getting my usual reaction and got the full BCG reaction I had known to expect. It was the first time that I had been on my RA drugs since my diagnosis in March 2019.
I have put in a request to speak with Dr. Black before my treatment starts May 20th. Hopefully I will hear from him before.
Xandra
Hi Tana,
I received my invitation letter from the BC Government, signed by Dr. Bonnie Henry on March 30th, managed to get an appointment by April 3rd. I was thrilled. I don’t know who or how I was recommended, but perhaps the BCG prescription which Health BC has access to.I noticed that it was on the website as well. I too had been going on frequently to see about vaccine access. I managed to alert my stepmother (81) and my husband (73) when their access days arrived. I wondered what would come first my age group (66) or the CEV. As I had TURBT surgery booked for April 13th I really wanted to get my first vaccine beforehand.
Congratulations on your first vaccine dose. It is such a feeling of relief isn’t it.
Mary
Xandra
I have told my family and close friends about my bladder cancer and BCG treatments. Explaining the timing of the treatments and the cystoscopies. Everyone seems to understand the process. I check-in via text afterwards with a “still cancer free!” Though this February it was “F$@k cancer! Recurrence”. TURBT again tomorrow. I hope to be cancer free again.
Xandra
Surgery is tomorrow. So glad to finally get these tumours out!
I will be having Cisview, an infusion of hexaminolevulinate. Which I have had the past two TURBT ‘s. With the use of blue light during surgery it can illuminate any tiny cancer in the bladder before it can be detected in a normal cystoscopy. It’s an added reassurance that every bit of cancer is removed. The procedure is similar to BCG. One hour before surgery a catheter is inserted into the bladder and infusion is deposited. The exciting bit I miss due to general anaesthesia. But I do find out after surgery if any other cancer was seen.
Tempted to ask if I can have a spinal block, if they would let me watch the surgery on a monitor.
Xandra
Congratulations on your vaccination Joe! And on your clear cysto. Wonderful news.
I have my vaccination tomorrow and my TURBT on April 13th. Things are finally moving forward.
I hold my newest granddaughter as much as possible. She eases the pain which is amazing. I think that it’s the body’s release of oxytocin. We were helping with childcare throughout the pandemic so our toddler grandson didn’t go to daycare. Our family bubble is full of children which is a bonus.
Happy spring everyone.
Xandra
Hi Jack,
You are very fortunate with the short wait for results. Unfortunately my doctors do not copy family docs on the pathology requisition form. My wait was 10 days on the first TURBT, and three weeks on the second follow up TURBT. I called the office asking for a copy of the path report and was told that I couldn’t get one until after Dr.So signed off on it, which he did once he called me. Three weeks later. I also requested that the path report be sent to my family doctor, but was told that the same rules applied.
I am still waiting for a surgery date which will be sometime in April. My cystoscopy was February 19th. I am just waiting while the little garden of papillary fronds grow in my bladder.
I am going to make a point in the before surgery consult to request that I get access to the pathology report sooner.
I feel it’s a difficult line to be a self advocate. Not wanting to be too annoying and wanting the best possible results.
How long did you wait between your positive cystoscopy and TURBT?
These days it’s easier than ever to understand pathology reports as we have the internet to help out with any questions.
Xandra
Wow Joe,
That’s a lot of research. Thank you. I am just waiting, all that I can do. Here we do the combined consultation and cystoscopy. Though the only time I had that was the first time. I talked with the doctor then went to the cystoscopy room. They have several. All the other times we would meet in the cystoscopy room. But moving onto TURBT is a wait.
As far as path reports go it would be possible to do in three or four days afterwards. It all depends on workload. I was trying to be generous with time.
I am also wondering about the next steps, though Dr. Black said let’s take it one step at a time. I know that it’s considered a fail of BCG treatment. So then what? Obviously if it’s invasive again I will be in line for a complete cystectomy. How long is the wait for that? How long is recovery? I would guess a couple or a few weeks.
Xandra
This is how it usually works. Monday surgery, specimens are sent to the laboratory.
Tuesday gross pathology. Pathologist dictates as he goes through each case. Larger specimens, like a bowel resection or mastectomy are carefully marked and measured, representative pieces are cut away and the pathology assistant (was me) put them into marked little perforated plastic containers, noting amount of specimen in each.
Smaller specimens are usually submitted in total
Sent off to be made into slides embedded in wax sliced very thin, stained appropriately, which the pathologists will read the following day or two. Wednesday or Thursday Make a dictation. Dictation is typed into computer Friday? Both the gross and final. Reports are electronically sent to doctors.
About a week. Everything can be delayed by stat holidays. Unfortunately I have found that the urologists at our VGH/UBC office seem to take a long time to phone patients, which they insist on doing before the reports are forwarded to family doctor. Due to their heavy workload this can take two or more weeks for them to call us, the patient.
They do take the time to thoroughly go over the report and explain the next steps, which a family doctor wouldn’t be able to. I always ask for and receive a copy of the path report. It can seem like torture waiting for that call, especially when you know as I do how long it takes, knowing that the report is at the office waiting for the doctor to work his way down the line to your report.
Waiting is the hardest part for us. Not knowing.
Xandra
Joe,
The benefit of enblock is that you can stain the margins of the tissue during gross pathology before it is made into slides. Not sure about bladder specimens as that’s after my time. In other surgeries a stitch is put in as a marker by the surgeon and he writes on the pathology form the orientation.
Peter,
Thanks for the encouragement. It all seems to take too long. I remember from my first TURBT, waiting on the path results, then was told that as it was T1 I would need a second TURBT six weeks later, and waiting on that path report.. Waiting is the worst. Seasons change through the waiting. I am glad for spring again. Waiting on our turn for vaccination too.
Xandra
