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adenocarcinoma
Hello to all
I am newly diagnosed with urachal adenocarcinoma – its early days and I would appreciate being able to type/talk with others who have experience of this kind of cacer in particular – or those with invasive BC.
Hope your all having one of life’s better days
dixie5
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49 Replies
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Hello,
The “tumor” team met at Moffitt on Monday to discuss my husband’s medical treatment options after the surgery he had a month ago..
The fact that there was a cancerous lymph node in the fatty tissue made a difference in a negative way.
There are many unknowns when dealing with treatments. The adenocrcinoma tumor is found in only 2% of bladder cancer patients vs. a urothelial tumor which is treatable.Option 1 is watchful waiting with a CT scan every 3 months.
Option 2 is radiation/chemo or immunotherapy…has not proven effective in most cases
Option 3 is a clinical trial using radiation/immunotherapy. Details will be furnished to us if my husband would qualify for the trial. It is being conducted by a group I am not familiar with.So, not the outcome we had hoped for..but you play the hand you’re dealt.
Good luck to all…be safe -
Sure sounds good to me. One day at a time!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
That is good news!,
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
I finally got a call from Moffitt today regarding the pathology report on the tumor and lymph nodes.
The tumor is an adenocarcinoma which we knew from the original biopsy/TRBT
During the partial cystectomy, the surgeon also removed 19 lymph nodes.
The node closest to the bladder was cancerous. The other 18 nodes were negative!
Truly a nice surprise.
There is a weekly meeting every Monday at Moffitt to discuss the patients tumors and treatment options. This includes the surgeon, oncologists etc.
They will discuss my husband’s case next Monday.
They will contact us next Tuesday or Wednesday to discuss their consensus.
This is the best outcome we could have hoped for, given the severity of the situation.Be well and safe…enjoy life.
~carol -
Sorry about the post resembling a rant.
My biggest concern is the fact that adenocarcinoma bladder tumors do not respond to chemo or radiation.
Assuming that the lymph nodes have also been invaded after a partial cystectomy, time is of the essence for my husband. Critical decisions will have to be made.
I have noted that MD Anderson has a Phase 2 clinical trial for this type of tumor, but results have not been posted on the NIH website.
Good luck to all…
~carol -
Yes, not having the path report by now is SLOW. Getting out of the hospital is a big improvement. Hopefully they can eliminate that clot.
This board for rants, complaints and the occasional good news. You have the right attitude of one day at a time. We are here as listening ears so post anytime.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
My husband had his surgery on August 27 and we still have not heard the results from the pathology report from Moffitt. He ended up in the hospital for 2 weeks.
When they discharged him last week, he had a blood clot in his lung and pneumonia. He came home with a catheter.
He is now on blood thinners for the clot and antibiotics. The catheter was finally removed by our local urrologist 2 days ago.
I am calling Moffitt on Monday and requesting a post-op meeting ASAP to hear results from all tests/scans etc.
It is absurd to wait this long to hear results.
I still believe they have not told us anything due to all of the multiple complications.
I can assume the lymph nodes were invaded. I am a realist.
The hardest part of this is the fact the Moffitt will not allow me to be with my husband when he has this meeting.
Due to COVID no one is allowed in person…only by ZOOM. Seems odd since they allow 1 visitor to the hospital from 11 AM- 6 PM every day.
Taking everything day to day.
Thank you to all.
~carol -
Carol,
We are here to listen! Hopefully, the worst is past and the trajectory should be up…albeit slowly. Give yourself a pat on the back. Some of the hardest parts of a major surgery fall on the caregiver.
It is one day at a time. and COVID makes it doubly tough
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Thank you!
I hope you are right about the path report…clean lymph nodes would be a really positive outcome.
The Visual NG tube seems to be working..
Tomorrow they will clamp it shut and feed him some broth. If that goes well after a few more clear liquids,
they may take it out.
Dr. Sexton want hims 100% before he is discharged. A good thing.
I have been extremely impressed with the staff at Moffitt. Top notch and caring.
I would highly recommend to anyone.Thank you again.
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Sorry to hear that the surgery wasn’t as smooth as it might have been. This isn’t easy surgery! I don’t think the lack of information has anything to do with your husband’s condition. Sometimes it takes a week to 10 days before the path results are available. Meanwhile, we will keep our fingers crossed!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
Good Morning,
Well, it is now over a week and my husband is still in the hospital at Moffitt.
He has had serious gas issues due to a hiatal hernia in his stomach. It is affecting his lungs so he is on oxygen.
The first attempt to insert an NG Tube was unsuccessful..the herina was blocking the tube.
Late yesterday, they used a visual NG tube and inserted it into his stomach. It might take 2 days to see if it works.
He has not had any real food in over a week.We still have not received the path report.
I suspect if the news had been good they would have told him already.
I think they are waiting for his situation to improve to tell him less than positive news about the lymph nodes.
Since 1 lymph node close to his bladder was cancerous, the odds are against him.
I do not see any chemo/immunotherapy treatments for this situation and type of tumor post-op.Sorry…I know I do not sound positive, but I am a realist.
He is depressed…as could be expected.
The no visitors policy has added to this.
GLTA
~carol -
I was thinking of you yesterday. That’s good news about the clean margins. Hoping for an encouraging path report and that they can offer a treatment plan going forward. Take care. ❤️
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 husband had his partial custectomy yesterday at Moffitt with Dr. Wade Sexton.
The good news is he removed the entire tumor and had clean margins.
The bad news is that 1 of the lymph nodes close to the bladder was cancerous.
We will be waiting to hear the pathology results for the other lymph nodes that were removed.
Not the news I hoped for, but will wait and see.
I guess my biggest concern is that I have not found any chemo/radiation etc. that is effective with an adenocarcinoma. There was a Phase 2 treatment done at MD Anderson, but results have not be released.
Dr. Sexton had said we will discuss future options, if any, when we get the pathology report.
~carol -
Fantastic! What a great family!
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Thanks. We live in a beautiful rural area so lots of drives, drive-thru food runs, good home cooking by one of our sisters, and socially distanced family visits. With five siblings checking on her and calling every day plus visits, we stay close.
Best wishes… CatherineTURBT 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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