Re:adenocarcinoma

9 years 9 months ago #38490 by CatherineH
Replied by CatherineH on topic Re:adenocarcinoma
Good morning Dixie... When one enters the realm of bladder cancer, you will be on a lifetime of follow up. While at first that sounds daunting, I have come to be comforted that my doctor is looking out for that devilish cancer since BC has a high recurrence rate.

There aren't many stats out there specifically for recurrence of adenomacarcinomas, so my uro is going mostly by established guidelines for any BC followup. My schedule has been:

Since my partial cystectomy in Feb. 2010, I have had 3 cystosopies (cystos) at 3-month intervals, then 2 cystos at 4-month intervals, and my next appointment in October will be the first time we have stretched it to 6 months between checkups.

In November 2010 (9 months post surgery), he ordered an abdominal/pelvic CT scan checking for mets, and that will be repeated again in October.

So far all has been clear. As you have probably read here in various places, we all get pretty nervous as our checkups approach. I think it's only natural to brace oneself for bad news while hoping for the best. We enthusiastically cheer every good report here!

Keep that wonderful sense of humor as much as possible. Get out and do something to take your mind off it even for a couple of hours, like a funny movie or just a nice nature walk. I love your little saying about having one of life's better days. Let us know how things go because we are cheering for you now.

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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9 years 9 months ago #38514 by dixie5
Replied by dixie5 on topic Re:adenocarcinoma
Hello Catherine
Yes it slowly beginning to sink in that this is a marathon not a sprint to the finish line - so I had better invest in a good pair of gym shoes.

Today pretty exhausted after scans yesterday – so from now on I will only pencil things into my diary.

Its natural that people’s anxiety levels mount as check ups approach – but it was positive to read that you have had good results – long may that continue to be the case.

Its funny how we call cancer a negative test result and yet the medical call it positive – no doubt because it is confirmed – a reversal of terminologies.

Did you find it difficult to sleep at first? Thanks for the distraction ideas – I have had MS for years and my best weapon is distraction – even if it is only a talking book from the library. Its amazing how much better we cope with pain if the mind is sent on a ‘detour’ giving it something else to focus on.

The hope you are having one of life’s better days – sprang from two things – an advertising campaign for cancer patients – highlighting that is was a good day when the diagnosis of cancer did not dominate your thinking for the day coupled with something I read – when a person has a long term problem – instead of asking them how they are – ask how are you today – which forces them to stay in the present and often realise that yes today I do feel slightly better than yesterday – or if the reverse is true of today that maybe tomorrow there will be a positive development.

Thanks for your ongoing support

Take care yourself – remember this is not a one way street – I am here to give as well as receive

off to bed to try and get some sleep - at present my brain won't shut down - so sleep is elusive
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dixie

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9 years 8 months ago #39189 by dzkimmi
Replied by dzkimmi on topic Re:adenocarcinoma
I had adenocarcinoma of the bladder, urachal origin. Not sure if that is the same as what you have. I am a 16 year cancer survivor and I wanted to offer you some information, and some hope!

Mine was further along when caught. I was stage 3. The tumor was on the top dome of the bladder, and had worked into the bladder. I had surgery to remove that portion of the bladder (clear borders). Lymph nodes were clear. I had 6 weeks of radiation and 6 months of chemotherapy. Cistplatin and 5 FU, and then switched to Carboplatin and 5FU.

I have been cancer free ever since! I pray a lot, and I think that has helped me stay positive and fight. I refused to give into the cancer, and it has stayed away!

I have had a few negative affects from the treatment, but nothing horrible. I am able to do everything I choose. I cant hold my pee very long, and thats probably the worst affect. Not like I have to run to the bathroom all day long or anything, but i cant hold it as long as I could before.

If you have any questions, please ask :)

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9 years 8 months ago #39193 by CatherineH
Replied by CatherineH on topic Re:adenocarcinoma
Hello dzkimmi... Thanks for sharing your story and adenocarcinoma journey. It is inspiring to hear from someone who has a 16-year history of survival and still going strong because reading most of the clinical info out there is so bleak.

Dixie... I hope you have had your questions answered by your doctors and that they are treating you with utmost care. Take care and say hello to your lovely Mum.

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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9 years 8 months ago #39197 by dixie5
Replied by dixie5 on topic Re:adenocarcinoma
Hello dzkimmi and Catherine

your post dzkimmi was music to my ears - last week I was told there was no hope of treatment only palliative care - yet it sounds like we have the same problem - primary urachal cancer that has invaded the bladder - wow 16 years. Do you mind me asking who administers the chemotherapy?

My situation is somewhat different in that surgery (the gold standard treatment for UA) has been ruled out - so only chemotherapy and radio therapy were left as alternatives - these two were ruled out due to a lack of established protocol - I was willing to try and experiment - but my oncologist was not stating that it would make me much sicker in the short term and would not cure the cancer anyway or even shrink it.

Not the answers I was expecting to hear - so now I am investigating alternative therapies as I can't accept that nothing can be done - I can't resign myself to sit around and wait for the inevitable.

I agree that faith can make a huge difference - other questions comes to mind - can you recall what the grade of the tumour was at the start and how quickly did you have the operation?

Catherine - how are you? My Mum had a bad fall - she is quite frail - but strong in spirit and always trys to be cheerful - though as you might imagine my family are devastated as they digest this latest development.

take care to both of you - hope you are having one of life's better days

dixie

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9 years 8 months ago #39200 by CatherineH
Replied by CatherineH on topic Re:adenocarcinoma
Dixie... that makes me so deeply angry that your doctor says he just can't help you, so I can only try to imagine how that makes you feel. Have they found distant mets to cause him to be so absolute in his opinion, or has he explained his reasoning based on your path reports/scans? Do you have any options for a second opinion at another medical facility? Can you get your scans to send elsewhere? I'm just trying to think of any other possible options.

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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