Urologist appointment

[Rhonda-Lee]

Hi, I’m looking for some suggestions of questions to ask my urologist tomorrow. This visit will be my second post surgical visit. The first was more focused on scheduling the removal of the JP tube & Suprapubic stent.

I have read other posts that say that I should have a copy of all pathology reports, so I will definitely ask for those as I don’t even know anything about the BC that I had. I was so sick before my surgery, that I was happy just to get it out of me!

So, I would be greatful for any suggestions.

Thanks All!

[fighterm]

Would they schedule any future CTs to check out that the cancer did not escape.

[Ieva]

Hi Rhonda-Lee,
I started a doc appt specific journal when Malcolm was diagnosed. We would brainstorm questions, then I would write them in the journal. As the doc spoke, (without us asking any questions yet), if he was spontaneously answering our questions, I wrote the answers. I/we would then ask the questions we had brainstormed that he had not spontaneously addressed. This made our appointments use the doc’s time to the maximum.

If possible, do have someone go with you and be with you for all appointments. The other can do the recording so your attention is not diverted.

The questions we asked:
Explain the pathology report (Staging and grading)
Is chemotherapy indicated, or an option?
Follow-up schedule? Every 3 months either CT scan or ultrasound? Lab work?
When is a cystoscopy scheduled to check the urethra?
Do I need to learn how to self catheterize?
Bowel maintenance (if your bowels are constipated or diarrhea , the doc needs to know (NB to have easy stainless bowel movements)
Is B12 being monitored? (due to the location within the small bowel where B12 is absorbed and how close the neo bladder bowel section is taken)
Malcolm was an avid cyclist and worked out at the gym….so we asked when he could return to his regular routine
Sex life was important to us….we asked about intimate functions.

This was from our beginning …. we asked more questions, of a different nature, as time moved along and Malcolm was feeling better.

Ieva

[Rhonda-Lee]

Thank you so much, these are great questions! Also I will start a journal, fantastic for reference.

[KIOWA]

Hey Rhonda,

I think Leva pretty much covered everything. Most definitely keep a log of everything. No one can remember all this stuff and to prevent going batty like me, write everything down and do have someone with you. Very important.

Kiowa

[Rhonda-Lee]

I took Leva’s advice and bought a journal.
The appointment was good, Nephrostomy tube comes out Monday and the Pathology report was also good news; T3/N1/M0.
My urologist is sending me for a consult at the Grand River Cancer Center as a precaution. I will provide updates as I have them.

[KIOWA]

Great, I like the idea of some follow up with Grand River for precautionary purposes. Can never be too cautious. Good luck to you. Please keep us posted.

Kiowa

[Rhonda-Lee]

I forgot to mention the name of the cancer, it was; High Grade Squamous Differentiated.
I just read that high grade means 80% recurrence. That worries me…

[Rhonda-Lee]

@ Fight term, yes, my Uro said at 3 mths I will have the contrast CT, chest x-ray and if course regular lab work

[marysue]

Best wishes going forward Rhonda-Lee! I too, keep a journal and have found it helpful to remember if I’ve asked a certain thing previously or if something new came up about the same topic/situation. Leva, your questions/list is spot on. Thanks for this.

[fighterm]

I know nothing about the neobladder, but just wondering if they check it out by cystoscopy or only the urethra.
Leva, great questions.

[Ieva]

fighterm….
My husband’s neo bladder has been checked this way:
Year one and two – every three months….alternating between CT scans and abdominal ultrasounds + lab work
Year three and four – every 6 months….alternating between CT scans and abdominal ultrasounds + lab work
Year three and a half – cystoscopy to check urethra and peak into the neo bladder
Next appt April 2016

Before each appointment, we brainstorm questions and write them in the journal. I write the docs answers in there, as I leave space between each question.
Also, I get a copy of everything (scans, labs, ultrasounds, surgical notes)

[fleabane]

Am I reading this correctly? I should expect a tri-monthly CT until? Egads! All that radiation! I am glowing just thinking about it.

[Ieva]

fleabane….
To the best of my knowledge, currently there is not a set standard for follow-up. My husband had adenocarcinoma cells, which had spread outside his bladder. He also had a series of chemotherapy after his neo bladder surgery. His surgeon and oncologist were monitoring him very closely, to make sure there were not any stray adenocarcinoma cells floating about.
Yes, her was seen every 3 months., the CT and ultrasound were alternated, so only 2 CT in the 1st two years.

[fighterm]

Leva, thanks.

[Author]

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