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New DX – didn’t see this coming
Hello. My husband, who is 58, was diagnosed with bladder cancer a little over a week ago. He had surgery to evaluate the mass, and biopsy, and as of this moment have not received the pathology report but Urologist says defintely cancer. From the CT scan(s), Cytoscopy, blood work, and MAG3 study – all point to same DX and we also found out that the mass has been partially obstructing a ureter and MAG3 shows kidney is non-functioning. The other kidney is working but only at around 75%. No guess as to how long kidney has been non-functioning. Urologist believes the tumor has gotten outside the bladder wall and has referred us to UNC Chapel Hill – and we are currently waiting for an appointment. The Urologist is sure that the bladder, prostate, etc. will have to be removed.
We have been married 20+ yrs. My husband is one who keeps emotions inside. He is not interested in reading about treatment options or any articles about bladder cancer. He stopped working about a month ago – before the diagnosis – because it turns out he had been having symptoms that he didn’t get checked out before they made it impossible to work.
I joined the forum so I could understand the disease, treatments, and support from other caregivers.
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7 Replies
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Hello. Wanted to update from my initial post. 8/15 was my husbands initial TURBT. last Thursay his Urologist did a 2nd TURBT and placed a stint in his one functioning kidney and sent him home with a catheter. Today we met with the doc who confirmed the bladder cancer.dx staged at a T2. Because the mass is located at the bottom of his bladder the Urologist gently nudged him to mentally prepare for bladder removal. My husband – who’s normally a very stoic guy – said he has already come to terms with that inevitability. The mass has not grown into the fatty layer so that’s good news. We will now regroup and be referred to UNC Chapel Hill for treatment from here on out. Even though we didn’t learn anything new – it just seemed like we identified the enemy and started ouraction plan. My husband seems to have come to term with the dx and anxious to proceed. A much better place now vs the 8-15 bombshell dx.
I know I will.have lots of questions and need support and so thankful for.this forum. I promise to update as we navigate treatment in the upcoming months. -
HELLO jMACK
Did your husband go to the Dr Alone?
You need to go with him…… Yes I know he is a private kind of guy. But YOU HAVE TO GO WITH HIM.
I remember the shock I went into when the Dr said the c word. Lost all track of thought. Couldn’t remember a thing. Duh!
This is a TEAM Sport. He needs to have you there if he wants to win this battle. Bring a notebook, with questions, you will forget without it! And write about the things the Dr says.My wife and I were the ultimate TEAM. We went to every appointment together. After 8 years, I went alone to my Dr…… He noticed immediately and said as I walked out “Bring your wife next time…. You are a team”
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Just had to chime in and say what the others are saying are pretty standard observations. Plus, a second TURB is almost always done in a high grade DX. Don’t beat yourself up too much. Waiting is sometimes brutal but, as Sara Anne said the tumor has probably been there awhile. What you have laid out is good and you are on your way to fighting and beating this. One day at a time is all we sometime can handle. Post away to ask, rant, be angry, etc. We are here for you.
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.
It does sound as if your husband is in good hands. The best medical practice is to do a second TURB if there is any question at all about the results of the first. More urologists should do this! The first time, the doctor sort of knew where he wanted to take samples. Now he knows exactly where the areas of concern are and he will take special care to get appropriate samples there.
And yes, it does seem like it takes time. But the cancer has probably been there for quite some time. An extra month to be sure of the diagnosis will make the treatment plan exactly what is needed.
Is there any chance that your husband will allow you to go to the doctor with him? One of the prime pieces of advice for cancer patients is to take someone with them to take notes/listen carefully. The patient has so much on his mind that some things just slip by.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
JMack
It sounds like he is on the normal track. Yes, it seems like everything takes forever. We all sweat each time we have to wait.
The cancer is staged by how far it has grown into tissue layers. To know for sure, the pathologist needs to see uninvolved tissue beyond the tumor (clean margins). A second TURBT is common – now that there is an idea of what is there, a planned sample can be taken.I attach a link on the staging of tumors.
Easy for me to say, but stay positive. Wait for the pathology report. It is the key to a treatment plan.
BC can sneak up us in a real hurry – even with annual physicals and follow ups. It is sneaky. Then suddenly, there it is.
Thanks for being there for your husband.
Best
Jackhttp://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-staging
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Thank you very much for the warm welcome. I wish I had more details to share to get a more focused direction for my research efforts.
My husband talked to his Urologist today. I wish I could talk to the doctor because I have more questions than my husband has answers. From what I could ascertain from the conversation – Urologist says it’s an “aggressive” form of cancer but husband said he didn’t give it a “name”. Urologist said pathologist says he doesn’t think the cancer went beyond the bladder wall. I’m not sure how the pathologist could tell that, but the outcome of the conversation was that they will take husband back in, in TWO weeks (an eternity to us), to “scrape” him again and send the results back out. It took TWO weeks from the first scraping – so all told we will be sitting at like 2+ mos from the original DX with an “aggressive” not named type of BC and no movement towards a treatment plan.
Thanks for reading this and I am very aware that not having actual details makes it virtually impossible for anyone to comment specifically. Thank you so much for the links, and the kind words. Researching makes me feel like an active participant in this journey my husband and I just started.
You do have our support….wish I could give you a big hug << >>>!
It is wonderful that you are a support for your husband. Do hope that he realizes how fortunate he is to have you now and for the journey ahead.It is also great that the urologist has referred your husband to a place competent to handle what may be a complicated situation. He does need to be in a place that handles many many cases of bladder cancer, particularly those with complications.
In spite of the fact that right now your husband does not want to do any research, he is going to be faced with some decisions and would do much better with these if he were informed. Looks as if you may have to be the “research assistant” for him. There is a lot of information in this web site as well as online which should be helpful. Many patients have been where your husband is now and are living very full and satisfying lives with many many good years ahead of them. A lot of the quality of life ahead depends on a fighting spirit in the patient.
One decision which he may be asked to make is the TYPE of diversion that will be used after a radical cystecomy. Depending on the location of his tumor(s) and other complicating factors, all of these may not be available to him. However, he should be aware of them and ready to discuss all the options he is offered. The following web site
has an excellent discussion of these options (with thanks to Alan who found it!)
http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_DiversionThe urologists may also recommend chemotherapy before a radical cystectomy. The following web site covers all sorts of eventualities including chemo either before or after
http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-by-stageIn reading what I have written here, I am aware that I may have given you more information than you want right now. But you seem to be facing the reality of the situation and, as your husband’s advocate and “research assistant” you may want to check these out over the next few weeks.
Please feel free to ask any questions that may come to mind here. We are not doctors, but there are many here who have faced the same issues you and your husband are facing and who can offer their thoughts also.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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