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

dixie

Hello to all –

I hope you are having one of life’s better days.


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

dixie

vargamor,
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/
pat

Catherine,
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.