This year has been a blur...

10 years 6 months ago #34685 by CatherineH
This year has been a blur... was created by CatherineH
Hello everyone... I just found this site today as I was doing my usual morning scan for anything new on bladder cancer. My adventure began this past January 4th when my ob/gyn found a mass in my bladder during an ultrasound at age 55. Fortunately it was fairly small (1.6 cm) and I had it removed via TURBT on 1/21. It took a week for the pathology to come back and I went back to review the results on 1/28. Just as my doctor had explained on my initial visit, 95% of bladder tumors were transitional cell and many of them are benign... but, he said, mine was not one of those. It was a rare tumor in the bladder, less than 2% of all tumors, and was primary invasive adenocarcinoma. It was invasive to at least the inner lining, but inconclusive as to invasion into the muscle wall. He said he might see one every 10 years in his practice and referred me to Vanderbilt since it was the closest large hospital to my home. My appointment in Nashville was scheduled for 2/4.

Driving home I was just numb, like so many of you have described at hearing your name and "cancer" in the same sentence. I was so shocked since I had never even had a UTI, have always maintained a relatively healthy lifestyle of diet and exercise, a urinary issue was the farthest thing from my mind. I began to read everything I could find on the internet about bladder cancer and often the treatment of choice was radical cystectomy. There is so little information on adenocarinomas except to say how rare it is and its poor prognosis. So for two weeks, I went between the extremes of stressing about that possible outcome to a calmness that said don't worry until I know what I'm dealing with.

My appointment day finally arrived on 2/4 (5 hour drive to Nashville) and I met with my recommended oncologist/ surgeon. After looking at my CT scan, he said due to the location at the dome, he could do a partial cystectomy at the tumor site to ensure the tumor had been completely removed. Needless to say, I was very relieved to hear that my bladder would be spared.

My surgery was on 2/25 which was Thursday. I'm a pretty small person and had a 5.5 inch incision from just below the belly button to the pubic bone. The surgery went fine and I went home Sunday with a catheter for the next 3 1/2 weeks until I returned for a follow up. The catheter was a nuisance, but I was so grateful to have it because it meant I still had a bladder.

The Vanderbilt nurse called on Tuesday after I got home to tell me that the pathology had come back and the margins were negative for cancer. I was barely able to eek out a "thank you" because I was crying so hard. I guess holding in all that emotion for so long had to break sometime. When I went back to have the catheter removed, the doctor went over my pathology report in detail with me and there was a tiny bit of tumor in the wall section he removed so the TURB had not been able to go that deeply. The final staging was T2a. He took two margins around it which were both clean, plus 3 lymph nodes, and tissue from the removed urachus showed no cancer. (I had never heard of "urachus" until all this started).

I healed quickly over a six week period. I have had two cystocopies at 3 month intervals which looked great. My next one is 11/22 plus a CT scan. I know I have had the best possible outcome given the circumstances. My ob/gyn was so persistent and would not give up looking for the source of a tiny bit of bleeding I told her about. I just thought it was a little post-menopausal bleeding, but she kept me there 3 hours while she kept checking different things. I am so grateful for her caring attention.

My question (if you're still reading this long post) is whether there is a time when you ever stop feeling like a dark cloud is over your head waiting for this cancer to return. It seems that BC has such a high recurrence rate that it's hard to breath easy. There is so little information out there on adenocarcinomas that I feel alone in this journey. My background as an engineer makes me want to troubleshoot and find the problem that caused it, then fix it. That doesn't work for cancer as no one can pinpoint what causes it.

I told my doctor that I had two important questions based on internet rumors: 1) can I still drink coffee... he said "yes", and 2) can I still color my hair... he said "yes". Neither are proven causative when used sparingly.

Neverless, I have quit using most of my cosmetics/lotions and have greatly reduced any processed foods I eat. I think about it every time I go to the bathroom, start to apply anything to my body (soap, shampoo, lotion, etc.), or eat food from the store, and I know I am obsessing in a very unhealthy way.

Any advice you can offer will be greatly appreciated. I know how remarkably lucky I am at this point and I try to see that side of the coin on a daily basis. Your stories and posts have been very helpful, so thank you for sharing your thoughts here for anyone who needs to hear them. Today that was me...

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

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10 years 6 months ago #34686 by jj803
Replied by jj803 on topic This year has been a blur...
Since I am only about 2.5 years post cystectomy and getting close to 3 years since diagnosis (end of 2007), I can only say that at this time (in spite of no evidence of disease as of last set of tests and scans), I am still not free from concern. My urologic oncologist (also at VU) has been most positive as to my situation and has said that for bc the vast majority of post cystectomy recurrence is within the first 2 years. I did not have adenoca, but I would think a T2a tumor that has been completely removed would probably not have a greater chance of recurrence since the pathogenesis of this tumor is probably different than for urothelial cancers. I hope that you continue to be cancer free and will definitely be thinking of you as you approach your next scans. Best wishes,

jj

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10 years 6 months ago #34687 by CatherineH
Replied by CatherineH on topic This year has been a blur...
Thank you, jj. Congratulations on your continued recovery. I have been very happy with my treatment at VU. I see Dr. Cookson and he is always very pleasant. It is getting a little easier not to think about it constantly. I'm hoping that continues with time. Who knows, we may run into each other in the waiting room one day!

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

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10 years 6 months ago #34690 by Patricia
Replied by Patricia on topic This year has been a blur...
Hi Catherine with a C..sorry i put a K the last time....
From Mayo Clinic
solitary lesions at the dome of the bladder, which usually represent neoplasia in a urachal remnant, seem to behave somewhat differently from lesions elsewhere in the bladder. Indeed, five-year survival of patients with lesions at the dome of the bladder who underwent segmental resection approximated that of those with similar lesions who underwent total cystectomy.

You're a very lucky lady.
Vandy has a great team of urologists and pathologists.
pat
P.S. i was also T2 and am now almost 8 yrs out from cystectomy
Quit worrying, eat some chocolate! :laugh:
pat

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10 years 6 months ago - 10 years 6 months ago #34692 by mmc
Replied by mmc on topic This year has been a blur...
Catherine,

Sounds like you did all of the right things! You went to a great place with great doctors. I wouldn't worry a whole lot about lotions and cosmetics and other things you apply to the outside of your body. Seems to be more of an increased risk due to things one eats or breathes. Even the hair dye thing was people who work around it and who would be breathing the fumes a lot.

Time to put it behind you and not worry. Worry is stress and stress can increase risk of all sorts of other issues.

You will get you follow ups at VU and they will let you know if you need to worry. Until they say worry, don't. :)
Remember that song? Don't Worry, Be Happy.... Get that in your head as your new theme song.

Or in the immortal words of Timon and Pumbaa:


Glad you found us and thanks for sharing your story!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
Attachments:

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10 years 6 months ago #34693 by CatherineH
Replied by CatherineH on topic This year has been a blur...
Good morning and thanks to you all for your encouragement and kind words.

Pat... I definitely eat chocolate EVERY day! Dark, of course (lol)!

Mike... I'll be humming "Don't worry, be happy" all day now. Thanks for starting my day out with a smile. I have to confess, I had to Google "Hakuna Matata" because I've never seen The Lion King. (gasp, I know!) I'll put it on my Netflix list.

I have come to believe that the 45%-55% 5-year survival rates I keep reading about are because adenocarcinomas are often advanced and metastasized by the time they are discovered, even though it doesn't actually say that. That has let me relax quite a bit. Yes, Pat, I agree... I am a very lucky lady! Thanks for sharing your recovery story.

I read all the research abstracts daily from UroToday and anything else I can find. I've been to the websites of all the big cancer hospitals, NIH, on and on. That probably means I spend way too much time reading and not enough time out doing things. But, did you know they are experimenting with implanting a small camera inside the bladder that can transmit pictures for two years for monitoring instead of doing cystocopies? (Still in artificial urine, not a human yet.) Not sure I would want that, but they are making advances against this awful disease all the time.

Have a great day! I'm off to meet some wonderful friends for lunch!

HAKUNA MATATA!!!

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

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