Adenocarcinoma - scheduled for partial cystectomy

6 years 7 months ago #46677 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
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?

Thats it. I think those are my biggest concerns. Thank you again. Take care.

Sincerely,
Lorraine

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6 years 7 months ago #46672 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
I will reply more when my tears stop falling down my face. I am so happy and grateful for your response. So grateful!!!! I know I have questions but need a moment to gather my thoughts. I am at the dentist with my 12-year-old :)

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6 years 7 months ago - 6 years 7 months ago #46669 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Hello Lorraine... Your situation is very, very close to what I experienced as Sara Anne said. I was in good physical shape otherwise, and a non-smoker as well. After having the tumor removed, the pathology came back as primary adenocarcinoma. My local uro was not experienced enough to be comfortable treating me further so he referred me to Vanderbilt in Nashville where my surgeon opted to do the partial cystotectomy.

The surgery went well and I was discharged on the fourth day. As you already know, you will have a catheter until your bladder has time to heal. For me that was just shy of 4 weeks but that was partly due to the fact that I live 300 miles away from Vanderbilt so they wanted to make sure there was ample time for healing. I was 55 at the time and no longer had to deal with periods so that will be an added issue for you but I'm sure they will tell you what you need to do in that regard.

The catheter was a major inconvenience for sure, but I viewed myself as being lucky to have it because it meant that I still had my bladder. Bladder removal had been discussed in the course of my diagnosis and that was way scarier than having a catheter for a few weeks. You'll have a leg bag for daytime so you can move around freely, and the night time bag for when you are in bed. They just connect/disconnect at the tubing that will be on your thigh. I showered with the night bag attached and just hung it on that little bar over the soap holder. I used alcohol to disinfect everything each time it was changed and all went well.

A few days after I got home from the hospital, the surgeon's office called to say that my pathology had come back clean which was overwhelmingly wonderful news. He took two margins around the tumor site, 3 pelvic lymph nodes, and the urachal remnant which is attached to the outside of the bladder dome.

Since bladder adenocarcinoma is a very rare condition, there isn't much data or statistics out there, and what there is reads rather dismally which had me really scared. A very wise person on this forum told me to stop reading those numbers because the info just wasn't reliable enough to predict outcomes. That made sense to me so I took that advice to heart and immediately started feeling more positive.

In the beginning, I went back every 3 months to be checked for the first year, then we stretched it out to 4 months for the next year, then went to 6 months for two visits, and my last check up was one year. My next yearly visit is coming up in October. Every cysto has been all clear, and I get CT scanned every year as well which has been good too. I am now approaching 5 years since my surgery.

This is a tough thing to be faced with at only 40 years old, but your age will work in your favor as your body is strong and should heal nicely. As with any surgery, you have to go slowly so your incision can heal properly. When they say don't lift anything over 5 pounds, listen! I live alone and did a bit too much too soon and now have a small incisional hernia but nothing serious with that.

Please ask any questions you have that I have not addressed. When I was diagnosed, I did not find this forum until months later and felt completely lost. I hope going into it with some information from someone who has been there is helpful.

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: DougG, Nicke, lorrainevalentine

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6 years 7 months ago #46666 by sara.anne
I am asking Catherine to reply to you. Your diagnosis is a mirror image of hers!!
And she is doing GREAT.

Best wishes to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: lorrainevalentine

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6 years 6 months ago #46662 by lorrainevalentine
Adenocarcinoma - scheduled for partial cystectomy was created by lorrainevalentine
I'm a 40 year old female (non-smoker) - I was diagnosed with bladder cancer in May, had the surgery via urethra (sorry not good with medical terms) where they removed it...found it in the dome of the bladder. Biopsy showed it was "adenocarcinoma". Now I'm scheduled for this partial cystectomy next Thursday. I'm feeling super anxious and scared about what to expect. Just wondering if anyone has this thing? (adenocarcinoma) and if anyone can share their experience regarding hospital stay, recovery, what to expect?? I was fortunate this didn't spread anywhere (lungs, etc.) but still don't know what the heck to expect....being a female - the inconvenience of menstruation after surgery with a catheter!! Just super anxious. Thanks for listening.

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