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adenocarcinoma
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Hi dzkimme… Dixie lives in the UK and they have a different system of how they treat patients which I am not familiar with. Sounds like she’s run up against a brick wall but I hope she can find a way to get around it or even knock a hole right through the middle of it.
Dixie… I hope you’ve been able to get some sleep, or at least some rest. So sorry about your Mum’s fall…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
My urologist didn’t suspect cancer, originally. They thought it was a cyst on the top of my bladder. I was young, did not drink or smoke, no cancer history in family.. So the surgery was to remove the cyst, which later turned out to be a tumor. Remember this was 16 years ago, so the Internet wasn’t much help, there was very little research done on this type of cancer, that could be found anyway. It was a stage 3 or C tumor. Clear borders and no involved lymph nodes.
I live in southern California. My tumor was sent to. Tumor board at UCLA, they had some suggestions about chemotherapy and radiation, then I went for a second opinion at USC, which was a joke. They wanted to remove the whole bladder and re reate one out of my intestines. Needless to say we decided to go with UCLAs suggestion. My oncologist was amazing! He explained everything to me, and I felt pretty aware of what the risks and benefits were. I was young and had two small children – I had to do whatever possible!
I had radiation and chemotherapy, which was not fun, but not unbearable either. To be honest, I can’t remember most of it. I had chemotherapy for one week each month. One night in the hospital and the rest at home through a portable pump I wore around. I was pretty sick during that week, but the other 3 weeks I was ok.
I think you should take your test results, scan films, and whatever else you have to another doctor. There has to be something they can do!!!
god bless you both..
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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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
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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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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
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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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 [url=http://www.freesmileys.org/smileys.php]
dixie -
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
Hello to all –
I hope you are having one of life’s better days. :cheer:
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. :unsure:
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
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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?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2803942/
pat -
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.
Catherine
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
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. -
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. -
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
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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