Re:adenocarcinoma

12 years 9 months ago #38441 by Vargamor
Replied by Vargamor on topic Re:adenocarcinoma
My husband was diagnosed in 2008 with Urachal Adenocarcinoma and he was sent to a doctor here in Missouri (MCA). His doctor had research his cancer and from what we have been told and read this is pretty rare and that even though they "seemed" to have gotten the entire growth removed during surgery it may return. I have tried researching this myself as well, but have been kind of concerned in whether or not the information is accurate or usable.
I have read the posts at several websites and some of them are disheartening, helpful, funny, and frightening. Since his diagnosis in 2008 he has had the cancer cells show up in his lungs, had a lung biopsy, and started Chemotherapy - of which he is on his 2nd round due to the increase in size of the cells in his lungs. We are prepared for the worst, but pray for the best.
If there is anyone else who can give us more information or suggestions we would appreciate it. Thank you.

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12 years 9 months ago - 12 years 9 months ago #38386 by CatherineH
Replied by CatherineH on topic Re:adenocarcinoma
Hello again... My resection was fairly small (I don't know the exact size). The tumor was 1.6 cm and had already been removed by my local uro via TURBT after discovery of a bladder mass by my gynecologist. After my path report came back, he sent me to a large hospital and experienced surgeon since primary adenocarcinoma was out of his field of expertise.

Surgery removed just enough wall to encompass the tumor site plus two margins. That path report revealed that a tiny .6 tumor remnant had been left behind but the margins were clear.

As far as post-surgery has gone, I can honestly say that my bladder is much the same as before. Except for the scar on my lower tummy, it is hard to tell I've had surgery. I might go to the bathroom a little more often now, but since I have always drank a lot of water during the day, it's hard to say.

I also have to add that I am probably in a small minority who fits the very narrow profile for a partial procedure since several factors have to be considered. I am extremely fortunate in that regard, and very grateful to my team of doctors.

I am glad you are assigned to a top doctor in his field. Remember there is no question too big or small to ask here. I am so happy you found us, and that we found you!

Here is a post by a young lady from Canada a few months ago who had the same diagnosis as you. After researching, consultations, and considering her options, she finally opted to have the RC. She hasn't posted back in the forum since then, but I imagine her life is pretty busy with her 3 small children.

You can read that here:
Click here

Best wishes... Catherine

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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12 years 9 months ago #38385 by dixie5
Replied by dixie5 on topic Re:adenocarcinoma
Hello Pat & Catherine

thanks to both for your input

Today I had a phone call from my original surgeon - he confirmed that report I had received - it was a true urachal adenocarcinoma - it was working its way into my bladder.

As the original scan was done back in March for other reasons - the tumour was not reported for three months due to a technical oversight - but once it was this surgeon acted quickly (well quick for the NHS system in the UK) that is why I have only just found out the diagnosis.

AS the origianl scan was only focused on the bladder and this was an incidental finding - I have to have more scans to stage the tumour - he is not sure if it is a single primary - a primary that has infiltrated other areas or a secondary from a tumour in another location - but these scans will be done quickly and he tells me I am now under the top uro-oncologist in the city - thankfully he will still be part of my team - he is very nice.

The way forward will be chemo and/or open surgery depending on what the other tests reveal - if surgery the top half of my bladder will be removed along with the urachas.

Which brings me to your point Catherine - thanks for sharing the benefit of your experience - do you mind telling me how your bladder now functions and how much was removed. I noted the size of your tumour - maybe the degree of removal is related to the size - mine was 5x3cm back in March.

I already have MS which affects the nerves of the bladder so am quite keen to know how things are post op

thanks both and I noted the mention of emotional support - it is a bit of a rollercoaster ride.

I am not just here to receive - I have a listening ear and am happy to try and help you too

hope you are both having one of life's better days

dixie5

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12 years 9 months ago - 12 years 9 months ago #38380 by CatherineH
Replied by CatherineH on topic Re:adenocarcinoma
Hello Dixie... If I understand your post correctly, your adenocarcinoma has been caught fairly early. That is good news in midst of an otherwise storm of shock when you first hear any kind of cancer diagnosis.

My adenocarcinoma was at the bladder dome but did not involve the urachus, so I can't add anything to that specific discussion. I had a partial cystectomy which removed the wall section around the tumor site. Mine was caught relatively early at 1.6 cm. He also removed the urachus and some lymph nodes which were all clear.

I hope you will let us know how things go as you talk to your uro about your treatment plan. This is a wonderful site for moral support as well as information.

Best wishes... Catherine

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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12 years 9 months ago #38358 by Patricia
Replied by Patricia on topic Re:adenocarcinoma
Dixie,
We've had many who are from the UK on this site...some have used The Royal Marsden, The Christie, Markey.....
But it sounds like your uro really is up with the latest treatment for this rare cancer wherever he is.
pat

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12 years 9 months ago #38338 by dixie5
Replied by dixie5 on topic Re:adenocarcinoma
Hello Pat

thank you so much for your offer of help in locating a surgeon - however I live in the UK not USA - I have googled the new one I have been assigned - he has lots of qualifications and works in a well respected cancer treating hospital. Time will tell..

Over the past few days I have met other other people with similar conditions to my own - over the internet of course - and it has been great talking to them - where would we all be without the world wide web.

Once again may I say thanks for your kind assistance and I look forward to getting to know both yourself and other people on this forum better

dixie5

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