Adenocarcinoma - scheduled for partial cystectomy

6 years 6 months ago #46737 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Lorraine... How wonderful to hear from you so soon!!! I am so happy you have this part behind you and now you can concentrate on your recovery.

I remember the first time the nurses came in to get me up to walk on the evening of my surgery. Ouch! But it got easier each time. Rest as much as you can and hope you are out of there soon.

I look forward to future good reports!

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: lorrainevalentine

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6 years 6 months ago #46734 by Flamenco.
Hi Lorraine,At 11 a.m. in Spain) So pleased your surgery went ok and the pain control is good so far. Will be thinking of you , and wishing you a swift and uneventful recovery xx
Diane
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6 years 6 months ago #46733 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
It's 1:51am (Arizoa time). I was a big ball of nerves prior to surgery but when I woke from surgery I was very confused. Was almost unsure if the procedure took place at all because my pain was next to nothing! Praise be to God! My biggest worry and it was taken care of. I have had the best team of doctors & staff caring for me. I just wanted to tell you that & express my appreciation to you again for communicating with me. :) blessings to you! I will be back later to tell more! :)

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6 years 6 months ago #46721 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
Thank you! I will keep you posted. It's been busy with last minute details I need to take care of (work, finances, household, etc.). I plan to blog here to give my day by day (if I can) from the hospital of how things are going. My pre-op today was overwhelming (x-rays, EKG, blood, urine). It feels so serious. I know it's all standard and precautionary but I still worry. Monday I had an endometrial biopsy, and so today I started my period. (Yay - :'( Just wonderful, right? :) I gotta joke. Because this is too much.

Thank you again for your thoughts. I appreciate it from the bottom of my heart!

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6 years 6 months ago #46712 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Hello Lorraine... I just wanted to let you know that you have been in my thoughts and I am sending you my very best wishes for Thursday. I hope all goes well and you have the best outcome possible with your procedure. When you feel up to it, please check in to let us know how you are doing.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: lorrainevalentine

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6 years 7 months ago - 6 years 7 months ago #46679 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy

lorrainevalentine wrote: Hello Catherine,
So I thought of a few questions. And honestly I am feeling much better about next week. But just wondered the following if you can answer or if not its ok (might be too much).
1). Did you have radiation or chemo needed for this?
2). Did you change your diet? I have been reading and have since changed to a clean way of eating moving towards vegan due to studies showing it can prevent the cancer from returning.
3). Did you have urethra and bladder spasms after surgery (cystectomy)? I had them last time and am so scared of that this time around, hence my super fear of the catheter. And if so, do you remember what you were given that May/or may not have helped with that pain?


Good morning, Lorraine... so happy to hear that you are feeling a bit better today. I looked back at my paperwork and I checked in very early on a Thursday morning for surgery and was discharged on Sunday around noon.

1) No, I didn't have any chemo/radiation. I asked the surgeon about that at my first consultation with him and he said there was no protocol for adenocarcinomas. The hope was that it had been a solitary tumor and removal of the surrounding area would take care of it. My tumor was 1.6 cm (2/3 of an inch)which I suppose is relatively small but it had invaded into the first half of the bladder wall. (T2a)

2) I had already been primarily a vegetarian for many years (not vegan) since about 1985 and mindful of my diet. I went through a phase after my diagnosis where I questioned everything I put on or in my body and stopped using lotions, skin care products, etc. due to the chemical load they carry. It was making me crazy. I read and read and finally relaxed a bit after what Sara Anne said about probably whatever led to our damaged DNA began many years ago. I asked my doctor if he had any concerns about coloring my hair and he said "no", nor about drinking coffee (those were my two main questions for him). I try to eat organic produce whenever possible, or foods with the least amount of processing. I have no doubt that the typical American diet is slowly killing us all, but I have finally reduced my anxiety about it to something I can live with now.

If I had to pick anything that might have contributed to my bladder cancer (and I had never even had a UTI), it would be my excessive consumption of diet soda with aspartame. I probably drank the equivalent of 6+ cans a day for a period of 20 years and there have been some studies of cancerous events in laboratory rats at very increased doses. I rarely drank water... only Diet Coke all the time, every meal, and in-between. Due to having been diagnosed with fibromyalgia in 2003, I had already stopped nearly all soda consumption about 4 years prior to my diagnosis and switched to only filtered water, but by that time any negative effects were probably already in motion.

3) At discharge, I was given a prescription for an anti-spasmodic for the bladder called Oxybutynin (generic for Ditropan). Oddly enough I still had the RX bottle in my cabinet so I took it out to see what the med was called. The prescription was for 20 tablets, and there are still 17 pills in the bottle so I only used them for the first couple of days. I do remember having the spasms which were pretty uncomfortable. When I would sit down on the toilet for bowel movements, the bladder tried to contract to empty even though the catheter was in there. When I was not thinking about the bathroom, no spasms, and after a few days I guess my brain convinced my bladder to just rest and quit trying to help.

Just as important was a stool softener and they recommended Senna you get at the drugstore. You don't want to have to strain during a bowel movement and that makes going much more comfortable.

I was also given hydrocodone for pain, but being one that does not like to take powerful meds, I just used extra-strength Tylenol for about two days after I got home then didn't need any further pain control. Of course I had the morphine pump in the hospital and that did the trick quite well.

A few other things... I was told not to drive for two weeks. You probably won't want to leave the house the first week anyway, but the second week I had my sister drive me to the grocery store. Just taking it easy, I got my shopping done. I wore comfy sweats so the leg bag was not an issue or visible to anyone. During week 3, I had to go to a funeral which I drove myself to with no problems. I tried to walk as much as I could tolerate and that got better each week.

Another hint... At the hospital, I couldn't wear underwear because I had a small drain in my abdomen, and I'm sure they wouldn't want you to either. After getting home, I found that wearing "granny" panties helped stabilize the catheter tube and were high-waisted enough not to irritate my incision. I had purchased them ahead of time since I usually wore the low-cut kind.

You will also have a little connector thing called a "StatLock" which holds the catheter tubing in place taped on your thigh which is where you will swap out the leg bag and night bag. They should give you extras so you can replace them as needed if they become unglued. They are super sticky and have to be removed with alcohol to dissolve the all the glue. Mine had little alcohol wipes included. You'll also need a bottle of alcohol for disinfecting the bags as well.

When you attach the night bag at bedtime, I suggest putting it in or hang it above a small container just in case it should leak. (I used that little bucket thing they give you when you leave the hospital.) Mine had a small pinhole in it right out of the packaging that I didn't see until the next morning. My friend had to go to the local pharmacy and buy me another one.

Just a few minor bumps in the road, but again, any abdominal surgery is pretty uncomfortable for a few days. Sorry I have rambled on so long. If anything else pops into your head, please ask. With bc, modesty goes right out the window, so pretty much nothing is off limits for asking.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: lorrainevalentine

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