Yikes! Invasive tumors after 4 years of low-grade

12 years 9 months ago #38121 by Kathleen_T
Replied by Kathleen_T on topic Yikes! Invasive tumors after 4 years of low-grade
Melodie wrote:Thanks. I am on Medicare with a supplemental plan. Probably would pay a fair amount of the cost if it prevents UTIs, but would have to find out.

As for age, nothing much to do about that! As my father-in-law used to say, “Consider the alternative!”

— Kathleen

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12 years 9 months ago #38116 by Melodie
Kat - Errors on my last posting - this year I pay 10% of my cost of supplies and next year I will pay 20% - it may eventually get to 30% but maybe by that time I will be on medicare.

Also....love my Indy....CAN DO almost everything I did prior to my surgery...but have to say the age thing is now slowing me down... :ohmy:

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 9 months ago #38115 by Melodie
Kat, Something I haven't talked about on my site but feel like I should address is the financial cost of supplies following surgery. It is something I had not even really considered prior to my selection of a diversion. I have always had good medical insurance but as we know in today's times, it is not a given.

When I first started using catheters, I was only allowed 10 per month by my insurance. About a year later, medicare changed its allowance from 4 or 5 catheters per month to allow for 200 a month. This was apparently due to so many having UTIs as a result of re-using catheters. And for the first 3 years of using catheters, my insurance covered all the cost of the catheters and related supplies. In 2011, I now have to pay 10% of the costs so if I get all the supplies I had been getting, I pay about $250 per month, and next year my insurance will increase my portion to 30% of the cost. I do not know what I will be paying when I go on to Medicare.

So, that being said, it may be worth it for you to look at what your costs will be for supplies for the Indy vs. the bag. I have no idea what the costs are for those who have the bag but I am certain it is less expensive if the Indy user goes through 200 catheters per month. Me, I have been lucky and re-using has not caused me any UTIs, so when I need to re-use them, I do.

Well, I'm sure you didn't need to add this concern to your list of things for consideration, but it is worth checking into so you know what to expect.

I can't say much about hernias since I haven't had one. I was very cautious about lifting when I got home after surgery and even now won't attempt to lift anything over 35 pounds. I have heard that sometimes they are just a result of the surgery but there isn't much we can do to prevent something like that from happening. Maybe someone here on the forum will comment on that aspect.

As for my experience with the Indy, I have to say, in spite of some of the side effects, if I had to choose all over again, I would make the same selection. Overall, I have been happy with my quality of life and can't do most of the things I did prior to surgery. As I said earlier, I don't get to this website more than once or twice a week so if you have any specific questions for me, you can contact me via my website address: This email address is being protected from spambots. You need JavaScript enabled to view it. I just ask that you put "Bladder Cancer" in the subject line so I give your email proper attention.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 9 months ago #38109 by Kathleen_T
Replied by Kathleen_T on topic Yikes! Invasive tumors after 4 years of low-grade
Thanks, Julie.

— Kathleen

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12 years 9 months ago #38108 by Kathleen_T
Replied by Kathleen_T on topic Yikes! Invasive tumors after 4 years of low-grade
Melodie wrote:Thanks — lots of good information there.
That all sounds pretty annoying (and scary). Glad it is behind you. I guess lyphedema is always possible if they had to mess with lymph glands. (I have had cellulitis, which is similar; no fun.)

What causes hernias? Are they common — I haven’t see much mention of them in my reading.
I am going to try. Thanks to you, Patricia, and others here who share information.

— Kathleen

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12 years 9 months ago #38107 by mamatrausch
Replied by mamatrausch on topic Yikes! Invasive tumors after 4 years of low-grade
melodie has helped me greatly during and after my RC. Her input and site will help. Lots of prayers for your RC.
Julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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