Follow up to intro post and advice

[Gord]

This is a follow up to my ‘introduce yourself’ post titled ‘My Journey So Far’ of last month. I will finish Rnd 2 of chemo on Monday, Mar 11, with one more round to go before my RC later this spring. Had a chest/abdomen/pelvis CT Scan late last month which came back clear, except for my bladder of course, but contained. In the words of the Drs – looks good! Grateful for that.
I have a couple of questions.
1)I am scheduled for another CT scan at the end of April, and then a TURBT, prior to the RC. (Had a TURBT in Dec)
Is this normal? Guess I was expecting a cystoscopy, not a TURBT. I am fine with it, just curious as to other’s experiences, and why they might do that. Kind of forgot to ask in the appt as I was happy about the scan results and suprised by the mention of the TURBT.
2)We have yet to discuss surgery options with the Dr, that will come later, but starting to think more about it and what is the best. 53 yr old guy here. Which is the best option? My two cystoscopies so far have been rather unpleasant (are they ever anything else, I know), but scar tissue from a previous surgery gives the docs a difficult time passing the scope, which makes me wonder about my being able to manage self catheterization with a neo bladder. Any advice or thoughts? If I have to go with a bag, which method is best?

[Greg]

G:
Congrats on the “all clear” everywhere except your bladder. Similar to what they said when they x-rayed my brain: “We could find nothing!”

The TURBT is by definition a resection so I expect they are taking tissue (tumour or otherwise) to determine stage and grade of remaining cells. Others may have other info. I had a TURBT a couple of months prior to my RC to remove additional tumours, which in retrospect seems like taking out the old transmission and then junking the car. However, they are likely interested in how the cancer has responded to the chemo.

I never “enjoyed” the eleven cystos and 34 caths I had either. The sharp corner at the prostate gets in the way of clear sailing. Of course, once the prostate is gone it is not so much of an issue. As well, I expect if you do it enough times, you discover which size is best for you. This is not a one size fits all instrument! Catheters come is different thicknesses (as do urethras, as it turns out).

Many, indeed most, men who have RCs and neos do not need to catheterize. Those who do seem to get used to it quite quickly. They can comment better about that though. Your uro-onc will also have recs about which diversion method he thinks is suitable based on your presentation, your age, activity, general health, etc. None is ideal; all are fairly quickly gotten used to.

Ask Magnum his views. He is a strong silent type but might assist in this discussion!!

[G and M]

Hi Gwj.

Best wishes as you go through your chemo treatment and congrats on the result of your CT scan.

I’m sure you’re doing lots of research on the different types of diversions. I take it your Doctor has advised you are a candidate for a neo, as you suggest it as one of your options. When my Doctor advised that I was a candidate for a neo, he also advised that he could not make the final determination until the actual surgery was underway. So I did not know for sure what type of diversion I received until I woke up after surgery.

There are lots of factors to consider, your health at time of surgery , physical body image after surgery, dealing with different accessories and materials, sleep interruptions, night-time accidents, possibility of self-catherization, possible changes in sexual function etc. As I’m sure you already know, there is lots of good information to be found on the internet. Ask your doctor if he has some patients you can contact to talk about their experiences after receiving a neo or IC. I’m sure that Jack Moon (from this site) can put you into contact with people who have received different types of diversions as well. Talking to people that have already gone through what you are about to go through really helped me when I had to make my own decision. I’m also a 53 year old male (now with neo).

Whatever you decide, I am sure you will make it work for you!

Good luck.

Glenn

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