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.
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.
Annalee is now posting over on the Canadian Cancer site.
Annalee had a full RC to ideal conduit. Seems to be doing fine. She had the
rc performed in Saskatoon by her Uro. She did see Dr Moore in Edmonton who
had recommended a partial. He thought because of the type and location of
the tumor partial would be good for someone her age. His main concern was
her weight. She decided on the full RC. Her Surgeon trained under Dr. Moore
and he told me her surgeon was very capable and had lots of experience.
She has had stoma issues (leaking) but I think now that is going well.
This info from Jack Moon who runs the site.
Pat... Thanks so much for the update on Annalee. I have thought about her so many times being a young mother faced with such difficult decisions.
Vargamor... So sorry about your husband's diagnosis. If possible, and if you haven't already, get a review of his case by a larger hospital who specializes in bladder cancer. There are some on the Home page of this website listed by state, and Patricia has recommended centers and specialists in various posts in the forums.
Even though you may feel your current doctor is doing the best he can do for your husband, having fresh eyes review it is highly recommended. Best wishes to you both.
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
i don't know what chemo regimen your husband is on but the latest thinking is to use an agent that is used for colon cancer and they've had quite a bit of success with it. Irinotecan
Urachal adenocarcinomas are often histologically similar to adenocarcinomas at other sites of origin, including those in then gastrointestinal tract such as the colon or stomach. The histology from this patient demonstrated the typical 'signet-ring' pattern that is also typical of gastric cancer. There is an additional case study in the literature from Japan that describes a patient with metastatic urachal carcinoma and a history of considerable chemotherapy whose lung lesions had a marked response to irinotecan.
Major cancer centers like MD Anderson are using this. Where are you located? www.ncbi.nlm.nih.gov/pmc/articles/PMC2803942/
Catherine – thanks so much for your reply and for sharing your experience with me. It was heartening to read that you don’t have any noticeable side effects from the reduced bladder capacity – do you still receive regular check ups – if so what form do they take?
Vargamor – nice to meet you – but it would have been nicer if we had a hobby as our subject in common not urachal adenocarcinoma –
You are right it is pretty rare. Like you I have done my research – but a little note of caution – things written about UA on the internet are not talking about us personally – its all too easy to get drawn into the negative picture that is painted – your husband and I are not statistics – many people defy the odds – but I do empathise with your angst.
As its not long since my diagnosis I am still in denial – though I had been ill for some time – at the moment I am trying to be positive and using a sense of humour to get me though all this – but I do appreciate that you have been fighting with UA for much longer and therefore have more experience than myself. Do you mind me asking did your husband have an extensive operation when he was first diagnosed – what kind of treatment has he had so far?
Pat – thanks so much for all your hard work on our behalf it is appreciated – the report from Japan was very encouraging – I shall look into that.
Today I am off for more scans to check for secondarys or other primary locations – the first Ct scan was very limited in scope – this one will be much more extensive – trying not to worry and determined to cross bridges as I get to them.
Sorry about the delay in replying – with investigations and treatment ongoing I don’t have as much time for my lap top – but be assured out of sight is never out of mind – now that we are becoming e-friends.
Thinking of you all and wishing the best for each and every one