Recently diagnosed & scared

RileyNH
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3 years 4 months ago #60261 by RileyNH

Replied by RileyNH on topic Recently diagnosed & scared

Thanks Donald. Appreciate the personal experiences and your advice. Will let you know how it goes.

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DonaldK
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3 years 4 months ago - 3 years 4 months ago #60260 by DonaldK

Replied by DonaldK on topic Recently diagnosed & scared

RileyNH

Great news on starting the BCG.

I found the initiation phase to be pretty tolerable - I did not have any issues that I can recall.

My doc did not have me stay after the instillations, but as you mentioned they asked that I TRY and retain the BCG for 2 full hours. I was able to wait about and hour and fifty minutes until I had to pee.

I was told the 2 hours is what they like, but I should only hold it as long as I felt comfortable doing so. The staff suggested doing things to distract myself during that time.

I was not made to do body position changes as the staff stated they drain the bladder completely before the instillation and the BCG would wash over the entire bladder surface no matter what.

Make sure you get plenty of water in you body after the treatment, and enough before hand so you can pee for the doc - but not too much that you are needing to go constantly during that first 2 hours.

If you have discomfort after the treatment try using a heating pad on your bladder/perineum (I used mine directly on the skin surface), a hot bath soak, ibuprofen or whatever NSAID you prefer.

I hope some of this helps - please let us know how this first round went for you (the good and the bad).

We are with you in spirit and will keep good thoughts going for you as you enter this phase of your treatment.

Hi Grade T1 CIS

Last edit: 3 years 4 months ago by DonaldK.

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RileyNH
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3 years 4 months ago #60259 by RileyNH

Replied by RileyNH on topic Recently diagnosed & scared

Hi everyone. I hope you all had a great Thanksgiving and are safe & healthy.

I have my first BCG tomorrow at 2pm and looking for any suggestions on how to make sure it goes well.

I will be in the office for the entire time doing the changes of body positions etc. so they can monitor me while I have the BCG still in me.

I am a little worried about holding it for the full 2 hours. Any best practices or advice would be appreciated.

Thank you

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DonaldK
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3 years 5 months ago #60151 by DonaldK

Replied by DonaldK on topic Recently diagnosed & scared

RileyNH

I just looked my results over online. My reports show at times elevated Leukocytes (especially high right after the TURBT's). My standard dipstick reports do not show WBC's, but do show RBC's which tend to be positive.

I agree with Alan (no offense taken) - the medical team understands these reports better as they are looking at them constantly and can make a judgement as to your specifics.

One needs to realize that we are all beautiful machines that function within narrow windows that are individualized to each of us

When I was actively nursing, I remember patients getting frustrated over various things (bowel movements were a common theme) - I would always ask what was typical for them, when they reported being in their 'typical mode' I would tell them that everything was normal.

So again, small variations are not a concern or panic started, just our bodies responding to the things they are going through.

Congrats on getting the 2nd TURBT completed and best of luck on the start of the BCG treatments.

You and your medical team got this!

Hi Grade T1 CIS

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Alan
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3 years 5 months ago - 3 years 5 months ago #60150 by Alan

Replied by Alan on topic Recently diagnosed & scared

Give me a urine test of 25+ items or blood panel of 50+ items and you will almost always find something out of whack. Speaking of another test....heart rate. I have ALWAYS ran 55-60 BPM since I was in my 20's. As one ages it does tend to run a little slower. Guess what? At 68 I am now about 53-54 BPM and my cardiologist panics every time I see him even threatening a pacemaker saying I need to be above 60, even though I am asymptomatic. I finally had to tell him to back off as this has gone on for 4 years. While I am not an Olympian, some elite athletes have rates as low as the low 40's even high 30's. I am in very good condition for a 68 year old (6'3", 190). 45 minutes of heart working walks, light weights and stretching every day so.....this BPM is MY normal.

Lesson? Do not get lost in the minute details. Whatever parameters you are looking at, if not too far off the chart usually mean NOTHING. WBC of 10-20 according to my retired nurse/wife....yes a little elevated but, your TURB probably has stirred up inflammation or maybe a mild UTI etc. At the same time do keep records for your reference. Second item, these tests are way over most people's ability to understand so I'd defer these strictly to your medical team (my apologies to Sara Anne, DonaldK and Joe who are scientists and a few others that post).

Focus in the fact you are on your way to beating this!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

Last edit: 3 years 5 months ago by Alan.

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RileyNH
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3 years 5 months ago #60149 by RileyNH

Replied by RileyNH on topic Recently diagnosed & scared

Hi all.... I am 2.5 weeks since my second TURBT and overall I am doing ok. Still have some pain during urination so my doctor had me give a urine sample. I just got the results late this afternoon and haven’t gotten a chance to discuss yet with my doctor. There was two items that were flagged including leukocyte erasterase at 2+ and wbc 10-20. The result gives me a trend of my previous urine tests and prior to my first TURBT on 8/28 my leukocyte showed trace and my wbc was also 10-20. I will speak with my doctor tomorrow but interested in anyone’s experience with an urinalysis done after their TURBT and the items I have flagged. Thank you in advance.

My first BCG treatment is scheduled for 12/9.

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